tag:blogger.com,1999:blog-35067535312849029812024-03-12T22:33:26.175-04:00PDNY: New York City Resources and Information Service for People with Parkinsons DiseaseWeb site devoted to providing a Resource Guide with listings of issues, events, articles and services of excellence recommended by patients, for the PD community, locally, nationally and globally..
We are also committed to the goal of providing speakers with PD to speak "with the patient voice" to educate the public and health care professionals.Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.comBlogger24125tag:blogger.com,1999:blog-3506753531284902981.post-77770680886622806272016-10-04T13:42:00.001-04:002016-11-02T09:37:11.680-04:00PDNY: New York City Resources and Information Service for People with Parkinsons Disease: Please join National MS Society in Patient Initiative re Drug Prices<a href="http://alphapdny.blogspot.com/2016/10/please-join-national-ms-society-in_4.html#links">PDNY: New York City Resources and Information Service for People with Parkinsons Disease: Please join National MS Society in Patient Initiative re Drug Prices</a><br />
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Dance for PD <a href="http://danceforpd,org">Free Dance for PD classes in All Nyc boroughs (and world)</a><br />
Blogger: Leonore Gordon, LCSW<br />
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Brooklyn Parkinsons Group brooklynparkinsonsgroup.org<a href="http://brooklynparkinsongroup.org/" target="_blank">Brooklynparkinsongroup- Free exercise and dance classes, programs and support groups</a>Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.com0tag:blogger.com,1999:blog-3506753531284902981.post-71814472808007863832016-10-04T13:12:00.003-04:002016-10-04T13:12:48.636-04:00Please join National MS Society in Patient Initiative re Drug PricesReally important NY Times article: http://mobile.nytimes.com/2016/09/28/business/furor-over-drug-prices-puts-patient-advocacy-groups-in-bind.html?smid=fb-share&referer=http://m.facebook.com<br />
PD patient advocacy groups! Feel free to substitute PD for MS in your own version addressed to elected officials, https://www.usa.gov/elected-officials https://www.usa.gov/elected-officials<br />
But don't let the MS folks stand alone.Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.com0tag:blogger.com,1999:blog-3506753531284902981.post-16679938989018110852016-09-19T09:16:00.001-04:002016-09-28T19:13:29.325-04:00Parkinsons Advocates Report Apathy Symptoms Alleviated Through Contributing to Community<br />
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<b><u>Key Findings & Conclusions/Implications and Future Goals as per Survey Results </u></b></div>
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<b><u>(54 respondents from ten countries, 8 from outside North America)</u></b></div>
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<span style="background-color: rgba(255, 255, 255, 0);">A) 76% of those surveyed experience Apathy symptoms as described in survey intro, <b>43% for a day or more</b></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">B) Only 33% of respondents report being clearly asked by their Movement Disorder neuro's if they've personally experienced Apathy symptoms, and only 21% of those surveyed had Apathy clearly explained to them as a PD symptom. A good number mistake Apathy for Depression. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">C) 83% of those surveyed felt Apathy had reduced their motivation to participate in physical, social and other activities which could benefit them </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">D) 81% of those surveyed felt advocacy and volunteering </span><span style="background-color: rgba(255, 255, 255, 0);"> endeavors reduce their apathy symptoms, with 68% saying this was for a week or more, </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">E) If offered, 92% would seize opportunities to help others in PD or other local communities, even from their homes. </span></div>
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<b><u style="background-color: rgba(255, 255, 255, 0);">My conclusions (& Implications) from survey results </u></b></div>
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<span style="background-color: rgba(255, 255, 255, 0);">1) Members of PD community need to better educate PD peers, our families, and our PD neuro's about differentiating Apathy from Depression, and to recognize and identify symptoms unique to PD-related Apathy . </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">2) We need to teach our neuro's and other health care providers the importance of inquiring from their PWP patients whether they have Apathy symptoms</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">3) Recommend to PD organizations and Health Care practitioners that they explore the willingness of patients to contribute to their self-defined communities-including working from home<b>- and emphasize the treatment value of this work as alleviating Apathy</b>. Next. </span><span style="background-color: rgba(255, 255, 255, 0);">Introduce idea to above groups of encouraging and/or recruiting PWPs with skills suited for needed positions benefitting the PD (or local and/or global community). </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">4) Encourage family members in PWP's support systems to do the same as suggested above; to find ways the PWP can help others, including activities done from home such as </span><span style="background-color: rgba(255, 255, 255, 0);">joining MJ Fox/PAN to e-mail legislative alerts, sending get-well cards or making phone calls to sick members of local community, enlisting friends and family to join Unity Walks for PD and other disease group fundraising, etc. </span></div>
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<br />Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.com1tag:blogger.com,1999:blog-3506753531284902981.post-45187946181992172462016-08-13T14:41:00.000-04:002016-08-13T15:10:39.450-04:00Learn About SIBO: Attention PD Community! GI Symptoms in PD Which Your Parkinsons Doctor May Not Be Able to Explain<b style="background-color: white; font-family: arial, sans-serif; font-size: 13.3333px;"><u>Attention Pd Community! Learn About SIBO: GI Symptoms in PD Which Your Parkinsons Doctor May Not Be Able to Explain</u></b><br />
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By Leonore Gordon, LCSW<br />
<span style="font-size: 13.3333px;"><br /></span><span style="font-size: 13.3333px;"><br /></span><span style="font-size: 13.3333px;">If you have Parkinsons and have had inexplicable weight loss, abdominal pain, are frequently bloated, gassy, feel full after eating very little food, and have IBS or Gastric Reflux symptoms, </span><span style="background-color: rgba(255, 255, 255, 0); font-size: 13.3333px;">constipation or diarrhea, all along with a recent dramatic reduction in the effectiveness of your PD meds, and if all of your medical tests have shown nothing your doctors can clearly point to, please look up "Parkinson's and SIBO" (Small Intestine Bacterial Overgrowth), and "Parkinson's and Gastroparesis." Here's one useful link, and there are other links below. </span><a href="https://www.ncbi.nlm.nih.gov/m/pubmed/24637123/?i=4&from=sibo%20parkinsons" style="color: blue; cursor: pointer; font-size: 13.3333px;" target="_blank">https://www.ncbi.nlm.nih.gov/m/pubmed/24637123/?i=4&from=sibo%20parkinsons</a></div>
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<span style="background-color: rgba(255, 255, 255, 0);">Basically, as our PD progresses, our GI systems (along with other systems) slow down, and infections easily hang out as food moves sluggishly through our bodies, inviting bacteria formation. All of these SIBO symptoms can follow a GI infection. A web site of a St. Louis GI practice </span><span style="background-color: rgba(255, 255, 255, 0);"><a href="http://gidoctor.net/" style="color: blue; cursor: pointer;" target="_blank">GIDOCTOR.NET</a></span><span style="background-color: rgba(255, 255, 255, 0);"> has an informative SIBO CENTER section, but not the PD connection. Check out <a href="http://gidoctor.net/" style="color: blue; cursor: pointer;" target="_blank">GIdoctor.net</a>, and SIBO Center, then Research, to better understand SIBO. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">Please read below info., and share the following with your Movement Disorder Doctor, and with your GI (if you have one). </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">The good news is that there are treatments which can get you back to normal mobility. First line of defense is a GI specific antibiotic called Xyfaxan, or Rifaximin (generic). </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">Unfortunately, both drugs are expensive, made by Valeant Pharmaceutical, a incorrigibly greedy big Pharm excoriated by committees in both houses of Congress in the past year for its predatory price-fixing. Some Part D and Medicaid plans do cover it, and you can also ask your doctor if they can get you free samples if you have problems finding either Xyfaxan or Rifaximin. </span><br />
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<span style="background-color: rgba(255, 255, 255, 0);">If you think you may have SIBO, find a PD-educated GI who's willing to learn from you. You can be diagnosed through a special Hydrogen breath test, but that can be expensive. What has also helped me is</span><span style="background-color: rgba(255, 255, 255, 0);"> Endozin (a digestive enzyme you can order from Amazon). </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">Once you have SIBO, it's tough to solve fully without changing your diet dramatically, and switching to foods all of our stomachs digest easily, called "Low FODMAP" foods. (See more below) Giving up foods you love can be really hard, but you do feel better in the long run. </span><br />
<span style="background-color: rgba(255, 255, 255, 0); font-size: 13.3333px;"><br /></span><span style="background-color: rgba(255, 255, 255, 0); font-size: 13.3333px;"> </span><span style="background-color: rgba(255, 255, 255, 0); font-size: 13.3333px;">The Research community has done very little research on SIBO and PD but some does exist. Here are a few scholarly citations. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><b>2013</b><a href="https://www.ncbi.nlm.nih.gov/m/pubmed/23712625/?i=3&from=parkinson%27s%20rifaximin" style="color: blue; cursor: pointer;" target="_blank">https://www.ncbi.nlm.nih.gov/m/pubmed/23712625/?i=3&from=parkinson%27s%20rifaximin</a></span><br />
<span style="background-color: rgba(255, 255, 255, 0);">2014 <a href="https://www.ncbi.nlm.nih.gov/m/pubmed/24992085/?i=2&from=/23712625/related" style="color: blue; cursor: pointer;" target="_blank">https://www.ncbi.nlm.nih.gov/m/pubmed/24992085/?i=2&from=/23712625/related</a></span></div>
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<b><u>Treating SIBO Through Diet</u></b><br />
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Google LOWFODMAP diets, and start cutting out foods with high FODMAPs (fermentable short chain carbohydrates). It's hard, but often the best solution. Look for a nutritionist who understands SIBO, as well as PD issues. Many of us taking Levadopa need to avoid animal protein and iron near our dosage times, as protein and iron compete with dopamine for absorption in our systems, and dopamine usually loses the competition,thus interfering with our PD meds and our mobility. Avoiding both High Fodmap foods and protein when we eat can be a real challenge if we're trying to maintain a heathy weight.</div>
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WebMD article recently posted a useful article about gas-producing foods which a list which somewhat overlapped the High FODMAP food list:</div>
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<a href="http://www.webmd.com/digestive-disorders/ss/slideshow-surprise-gas-causes?ecd=wnl_spr_061516&ctr=wnl-spr-061516_nsl-ld-stry_1&mb=0Azx0Hzf0zWURgNTb3GEMOHnVev1imbC9jNcepJLjWI%3d" style="color: blue; cursor: pointer;" target="_blank">http://www.webmd.com/digestive-disorders/ss/slideshow-surprise-gas-causes?ecd=wnl_spr_061516&ctr=wnl-spr-061516_nsl-ld-stry_1&mb=0Azx0Hzf0zWURgNTb3GEMOHnVev1imbC9jNcepJLjWI%3d</a></div>
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Personal Note:</div>
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For me, what has specifically helped SIBO symptoms, along with dietary changes, has been a variety of western and complementary medicines. </div>
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1) Xyfaxan </div>
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2) the digestive enzymes, Endozin, which can be ordered from Amazon. (Description of its contents<span style="background-color: rgba(255, 255, 255, 0);">: "Zinc carnosine has been shown to provide the first line of defense in gut repair. By promoting healthy mucus secretion, exerting antioxidant properties, and defending messenger cells, Endozin puts the kibosh on digestive offenders and protects the stomach and small intestine from further injury."</span></div>
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<a href="http://farmacopia.net/store/wp-content/uploads/2016/02/EndoZin-panel.jpg" style="backface-visibility: hidden; background-color: rgba(255, 255, 255, 0); border: 0px; color: blue; cursor: pointer; margin: 0px; outline: none; padding: 0px; transform: none; transition: all 0.2s ease-in-out; vertical-align: baseline;" target="_blank"><span style="color: #454545;"></span></a></div>
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My GI said this digestive enzyme was fine.</div>
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3) I'm also feeling better from use of a lesser known drug, LDN (low-dose Naltrexone) at a tiny dose of 2-4 mg., used for years by GI doctors experienced in treating SIBO. Again, check out the highly reputable GI practice in St.Louis, <a href="http://gidoctor.net/" style="color: blue; cursor: pointer;" target="_blank">GIdoctor.net</a>, and their SIBO Center, then Research, to better understand SIBO, and look for LDN research. They've had success in treating SIBO with LDN. My GI was willing to prescribe this.</div>
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You'll need a prescription of 50 mg. Naltrxone for a pharmacy to cover your prescription, which a "compounding pharmacy" will then break down for you. </div>
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Bottom line, changing my diet, after huge rebellion, helped me the most.</div>
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<span style="background-color: rgba(255, 255, 255, 0);">*Many thanks to Dr. Karen Raphael, my old friend and researcher who was diagnosed with PD about 12 years after me. Dr. Raphael, who also has SIBO, learned about it, found an excellent GI practice in NYC wth doctors who understand and treat SIBO, and shared what she'd learned with me. We are both finally feeling better, primarily from diet change.</span></div>
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High and Low FODMAP Foods</div>
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In one trial, researchers tested three different diets, controlled by handing out frozen meals to the 37 patients, all of whom had irritable bowel syndrome. The study was designed as a cross-over, so all patients got a week on each test diet (high gluten, low gluten or no gluten) with two weeks in between. The end of the study was a three-day repeat, where each patient got three days of gluten and another three days without. While there were some upset stomachs, no symptoms could be directly attributed to the gluten in the patients’ diets. Instead, the results suggested a placebo effect: If you think your stomach will be upset, you probably will have tummy trouble, no matter what diet you’re on.</div>
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Some might say that this study’s results mean that gluten sensitivity in general is “bogus.” But the study authors propose that something else entirely is to blame for gastrointestinal distress in IBS patients. Instead of gluten, look to fermentable short chain carbohydrates, called FODMAPs. These molecules are in wheat, barley and rye, as well as other foods including apples, cabbage and beans.</div>
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FODMAPs are always going to cause some trouble. They aren’t absorbed well in the small intestine, and when they hit the large intestine, they get fermented by bacteria. That fermentation process is what gives us bean farts and cabbage gas. But while the burrito bloat will happen to everyone, study coauthor Peter Gibson, a gastroenterologist at Monash University, hypothesizes that people with IBS are more sensitive to the gastrointestinal stretching produced by FODMAPs, resulting in more pain and symptoms. Since cutting out gluten also tends to cut out some FODMAPs, he says, people with IBS may well assume that gluten was the culprit.</div>
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In the new study, the test diet was also carefully designed to be low in FODMAPs. Gibson’s laboratory also reported in the <a href="about:blank" style="color: blue; cursor: pointer;" target="_blank">Sept. 26</a> Gastroenterology that 30 IBS patients cut their gastrointestinal symptoms in half when they spent 21 days on a diet low in FODMAPs.</div>
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Gibson has written a book promoting a low FODMAP diet, but more research is needed before the next diet craze takes hold. Other studies have shown positive effects of gluten-free diets in IBS patients. Some patients who self-identify as gluten-sensitive could well have other diagnoses that have not been ruled out, including FODMAP sensitivity, sensitivity to fructose or sensitivity to other proteins in wheat.</div>
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Maureen Leonard, a pediatric gastroenterologist at Massachusetts General Hospital in Boston, is particularly concerned that a gluten-free diet may not, in fact, be any lower in FODMAPs. “Many foods that are naturally gluten free such as fruits, vegetables and beans are quite high in FODMAPS,” she says. “In patients we see with true gluten sensitivity, gluten or wheat is the culprit causing the gastrointestinal distress.” She also has worries about the patient selection for the new study and the group’s earlier work. The patients were all self-selected as being sensitive to gluten. “Non-celiac gluten sensitivity can be defined as follows: individuals without celiac disease whose symptoms improve on a gluten-free diet after ruling out other conditions,” Leonard says. Because the patients’ symptoms were not necessarily controlled on a gluten-free diet at the start of the study, “the subjects in these studies do not meet these criteria.”</div>
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<span style="background-color: white; font-family: "arial" , sans-serif; font-size: 13.3333px;">Leonore Gordon, LCSW</span><br />
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130 8th Ave. #3A Bklyn. NY 11215 </div>
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<a href="mailto:Leonore1234@aol.com" style="color: blue; cursor: pointer;" target="_blank">Leonore1234@aol.com</a> </div>
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(718) 783-1986</div>
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<a href="http://alphapdny.blogspot.com/" style="color: blue; cursor: pointer;" target="_blank">Alphapdny.blogspot.com</a> </div>
Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.com0tag:blogger.com,1999:blog-3506753531284902981.post-55541904363115875002016-05-26T20:38:00.004-04:002016-08-14T10:53:24.346-04:00Parkinson's People: Please Take My Brief Survey About Advocacy and Volunteering as Alleviating PD Apathy<div class="p1">
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<b>DOES ADVOCACY & VOLUNTEERING ALLEVIATE PARKINSON'S APATHY?</b></div>
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<strong>Over 23 studies suggest that Apathy impacts 40% of those living with Parkinson's. It has been my observation as a clinical social worker with Parkinson's for seventeen years, that my own symptoms of Apathy are greatly reduced when I am proactively helping my community in some way,</strong> Multiple peers with PD have reported similar experiences, but as far as I know, there are no studies about this. Evidence has already shown that for those with PD, our quality of life and overall moods can reap significant benefits from exercise, dance, singing, involvement in the arts, and social connection. </div>
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If you are unsure about whether or not you may have Apathy or Depression, (or neither), there are a number of overlaps between symptoms of Depression and Apathy, including fatigue, anhedonia (absence of joy), slowness, and insomnia, (and some are symptoms of Parkinson's!) Depression, however, is a mood disorder with longer- lasting symptoms, and can include loss of self-worth, guilt, and suicidal thoughts. If you have any of these feelings, you should see your doctor for an accurate diagnosis.</div>
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Apathy is considered to be primarily a motivational disorder or syndrome, with symptoms which can fluctuate throughout the day. Some research suggests that Apathy seems to worsen as PD motor symptoms progress. Key symptoms of Apathy are decreased motivation to initiate new tasks; a flattening of emotional response (or indifference) to people & events which once evoked stronger emotional response; reduced curiosity and interest in learning new things; and a general loss of a "get up and go" spirit.</div>
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There are no formally recognized diagnostic tools for Apathy, but it is a recognized syndrome, and seemingly not alleviated by anti-depressant medications. Yet, when some with PD are engaged in Advocacy-type activities, such as educating others about Parkinson's, speaking with local or national political representatives about research funding, fundraising for a cure, or organizing visits or gifts for sick peers, those volunteers report that their Apathy symptoms seem to lift.</div>
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<strong>IF you have PD, please complete this survey to help me assess how widespread this "treatment" actually is. Thank you.</strong> <strong>Survey results will appear on a poster at the 2016 World Parkinsons Congress in Portland, Oregon. WPC2016.org</strong> <strong><em>Leonore Gordon, LSCW</em></strong>; leonore1223@aol.com; alphapdny@blogspot.com</div>
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<a href="https://www.blogger.com/%3Cscript%3E(function(e,t,n,s)%7Bvar%20c,o,a;e.SMCX=e.SMCX%7C%7C[],t.getElementById(s)%7C%7C(c=t.getElementsByTagName(n),o=c[c.length-1],a=t.createElement(n),a.type=%22text/javascript%22,a.async=!0,a.id=s,a.src=[%22https:%22===location.protocol?%22https://%22:%22http://%22,%22widget.surveymonkey.com/collect/website/js/Uw2hYTBMe9JqgaSTGh3XvJcBJ2DQmRk7a0eQjjei_2F7zM427v9s8Bge2nh0j85np9.js%22].join(%22%22),o.parentNode.insertBefore(a,o))})(window,document,%22script%22,%22smcx-sdk%22);%3C/script%3E">Please take my survey</a></div>
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Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.com0tag:blogger.com,1999:blog-3506753531284902981.post-73561587289375366952016-05-12T18:10:00.001-04:002016-05-26T20:18:08.276-04:00Join Us at World Parkinsons Congress in Portland, Oregon, from 9/.20-9/24 WWW.WorldPDCoalition.org<h1 style="background-color: white; color: #333333; font-family: Jura, sans-serif; font-size: 28px; margin: 3px 0px 10px; padding: 0px;">
<span style="font-family: "arial";">Join us in Portland, Oregon for the 4th World Parkinson Congress; September 20-23, 2016</span></h1>
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<span style="font-size: 14px;">More than 3,500 people from 65 countries will attend the <strong>WPC 2016</strong> in Portland, OR to learn about cutting edge science, clinical research and comprehensive care from some of the most renowned health professionals, researchers, and advocates globally. <a href="http://www.wpc2016.org/?page=RegFees" style="color: #d93921; text-decoration: none;" target="_blank"><strong><span style="text-decoration: underline;">Registration is open NOW!</span></strong></a></span></div>
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Look for Travel Grants if necessary.</div>
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Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.com0tag:blogger.com,1999:blog-3506753531284902981.post-39377861870760191162016-05-12T17:56:00.000-04:002016-05-26T20:33:28.337-04:00My Belief: Advocacy Alleviates Apathy Caused by Parkinsons: My Video Submission to World PD Congress 2016 Video Competition<div class="p1">
<span style="font-size: large;">Advocacy and Helping Others Can Be An Antidote to Apathy: My 3-Minute Video made with Myra Kooy</span></div>
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<span class="s1"><span style="font-size: large;"><br /></span></span></div>
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<a href="https://m.youtube.com/watch?feature=youtu.be&v=eOn-2O7OOig" style="font-size: x-large;">https://m.youtube.com/watch?feature=youtu.be&v=eOn-2O7OOig</a></div>
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<span style="font-size: large;">My video is about realizing how advocacy and doing good for your community alleviates the crippling Apathy which often comes with the whole package of PD, and which depression meds don't help.</span></div>
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<span style="font-size: large;">I was petrified to do it, but because this felt so vital to convey, I pushed past my self consciousness about PD symptoms of speaking too fast, too low, and too garbled when I get very excited to convey something important. </span></div>
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<span style="font-size: large;"><br /></span></div>
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<span style="font-size: large;"> This all is all like a dyskinesia of your expressive speech mode, common but exasperating and embarrassing. </span></div>
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<span style="font-size: large;"><br /></span></div>
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<span style="font-size: large;">So with my wife Myra as coach, I practiced speaking about what I needed to share into webcam on computer about three times to really assess myself. </span></div>
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<span style="font-size: large;">When I realized I didn't look so bad, but just couldn't slow down my speech, I decided to summarize bullet points on paper as I spoke, with my face hidden at points, as a kind of visual translation, with photographs. </span></div>
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<span style="font-size: large;">Enjoy! Leonore</span></div>
Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.com0tag:blogger.com,1999:blog-3506753531284902981.post-1399608652344080382016-05-05T18:30:00.000-04:002016-05-26T20:28:04.824-04:00My Articles: Shattering the Myth of "Wow! She's Gotten So Much Better!"<ul>
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<div class="MsoNormal">
<span style="color: #0491ce; font-family: "arial black"; mso-bidi-font-family: Helvetica;">Leonore Gordon, LCSW; (718) 783
1986; Leonore1234@aol.com Please do not duplicate without permission<o:p></o:p></span></div>
<div class="MsoNormal">
<b><span style="font-family: "arial black";">Shattering the Myth of
"Wow! She's Gotten So Much Better!" with “Your Neighbor with
Parkinson’s is Feeling Better For the Moment, Thank You, but Check Back in an
Hour....”<o:p></o:p></span></b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial black";"> As
a 58-year old female poet and retired family therapist, with 15-plus years of
living with Parkinson’s under my belt, I aim to take on PDF’s challenge for
Parkinson’s Awareness Month, ie. “Which myth about Parkinson’s would you most
want to shatter?” As a Jewish therapist, I’ll answer a question with a
question, and ask, “How many ‘selves’ really exist on a daily basis inside of
your neighbor with early-onset, advanced Parkinson’s?” (This is not to imply
that we who live with Parkinson’s are like “Sybil” with diagnosable pathology!)
<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial black";">I’m referring to the unpredictable and
fluctuating states our Parkinson’s bodies morph in and out of throughout each
day because of the imperfect medications most of us in later-stage PD need to
take every 2-4 hours in order to get up out of a chair and walk. These are
medications on which we are dependent to treat our disease until a cure is
found, but their consistent and hourly effectiveness is far from a sure thing.</span><br />
<a name='more'></a><span style="font-family: "arial black";"><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial black";">You are certain to know someone living
with ‘Young-Onset Parkinson’s’ who is not ‘elderly.’ She or he may share your
apartment building, or stand in line with you at your local greenmarket or
bank. Perhaps she is picking up her child or grandchild in the schoolyard. She
may be 35, 40, 55, 70, or 80, and while you may at times see this person
walking very slowly and cautiously, at other times, he or she may appear
inexplicably youthful, spry and energetic. When you see her looking perky, you
may exclaim, (more for your own need than hers) “Wow! You’ve gotten so much
better!” Unfortunately, you’ll be wrong, and worse, you’d be unintentionally
reminding her (or him) that unlike having a broken leg, there is no cure in
sight for Parkinson’s.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial black";"> Like
the multiple crazy mirrors distorting one’s reflection in a penny arcade, one
stretching us long and skinny, and another squashing us like Humpty-Dumpty, the
uneven success of our Parkinson’s medications likewise alters our physical and
emotional selves all day long, in equivalently grotesque extremes of reality.
My hope here is to crack open the illusion that the identity of your neighbor
with Parkinson’s is constant throughout the day, like a single-frame fixed
experience; ie. that when s/he is walking so ‘apparently’ easily, this means
that, therefore s/he is overall “doing much better.” <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial black";">
Let’s begin by with the classic image most have of those with
Parkinson’s, one of a person with a shaking hand; in reality, many of us have
tremors, but others don‘t, (like me, or my late father, who also had the
disease). And those with tremors don’t have them all the time, although the
absence of a tremor doesn’t mean they’ve “gotten better.” Parkinson’s presents
differently in every single person it afflicts. The real truth about this disease
is complex, unique to every individual, and far more difficult to digest.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial black";">
For those more intimate with us; friends, co-workers or family members
who spend many hours in our presence, our dramatic ‘shape-shifts’ between our
many ‘selves’ can feel bewildering and even horrifying, stunning them into mute
(and rarely expressed) grief. As I stated above, the mercurial moods of our
various medications throughout the day, can seemingly, in the mere flicker of
an eye, hurtle us back and forth from one life- stage to another, transforming
any one of us from an active person in her or his fifties (or eighties), into a
seemingly shuffling ninety-eight year old. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial black";">Many of our movements are not tremors
but ‘dyskinesias’, (involuntary movements), and are a side-effect of
medications. After five years or so of taking our gold-standard “Levadopa”
pills, most of us reach the top levels of the drug that our bodies can
tolerate, and our synthetic dopamine pills begin to either work extremely well,
too well, or not at all, with such variations occurring over the course of each
day. By “working too well,” I’m referring to our dyskinesias, which can make a
foot, hand, leg, or even the trunk of one’s body feel possessed by a cruel
puppeteer; one who jerks our body-part hither and yon, or whichever way it sees
fit.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial black";">Many of us call the experience of being
able to move when the med’s kick in, as being “On,” and when our med’s fail, we
say we are “Off.” Trouble is, the “On’s” are not all good, especially the
exhausting, exasperating, dyskinetic ones. During the good “On’s,” we can
almost pretend we don’t have Parkinson’s, and walk and speak normally. The bad
“On’s,” though, can feel worse than our worst “Off’s” as we walk and gesture
spastically, trip, knock over beverages, and fling pens through the air.
Sometimes all of this can be really funny if we’re with one another; more
often, however, we’d prefer to never, ever again feel this demoralizing theft
of control over our own bodies.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial black";">Our worst “Off’s,” on the other hand,
can be “soul-shattering,” as the former governor of the state of Washington,
Booth Gardner, once described them. In what can seem like a split second, we can
feel robbed of all that we had possessed just moments before; ie. our “true
selves”- the part of us full of creative ideas and exchanging passionate
opinions with friends. This transformation can occur while we are attempting taken-for-granted
motions as simple as turning our heads towards the person sitting beside us,
something we could accomplish moments before. And then, “Poof!” Our med’s fail,
and it’s like we’ve been tagged by an invisible assailant in an unasked for,
one-sided game of ‘Freeze-Tag,” rendering us literally incapable of looking at
a companion seated beside us.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial black";">My own sudden “Off’s” can feel like a
Kafka-esque metamorphosis, causing my previously animated and fluidly moving self
to randomly transform into its polar opposite. It feels like molasses suddenly
gums up my inner gears, slowing me to near immobility. My face muscles may feel
‘frozen,’ as if a zombie mask has been placed over my face, and my voice may
slow, lowering dramatically in volume. What I badly want to express becomes a
near-whisper, and my lips and mouth feel somehow numb. My hands may suddenly be
barely able to move, and if I try to stand up and walk to get more of the chips
I ate minutes ago from a nearby coffee table, I may not be able to do so at
all. I’ll need help because my muscles will have gone on strike, refusing my
commands to lift me out of the chair, never mind taking an initial step
forward. (Singing a familiar upbeat tune with us can often re-circuit our
brains, tricking them into allowing movement.) <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "arial black";">If I am helped up to my feet, I may
shuffle very, very slowly, fearing a fall, as my balance has suddenly left
town. Or I may lurch or skitter forward, appearing inebriated. (Such
off-balance lurching forward can be mistaken in public for inebriation, a
common misperception many of my PD-peers have shared stories about.) I cannot
overstate how much I hate this all-too-frequent “frozen” body-state. It is
simply not my image of my real mid-fifties active self. It’s so difficult to
remember when “off” that when my pills do kick in, Poof! my real active self
will truly return.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial black";">Our “Off’s” can also alter our moods, to
our own, and to our family members’ dismay. Dopamine governs our executive
functions, and when reserves are depleted, we can be like kids with ADD;
irritable, impulsive, and seemingly overwhelmed by such tasks we used to have
no problems with: transitions between activities, packing, or decision-making
about meal preparation or menu choices. Early PD symptoms can result in
depression or anxiety, as well, both treatable with anti-depressants when
recognized as such. <b>What’s vital to
understand is that our basic intelligence and creativity are not impaired by
our disease, but our stability of mood, emotional resilience energy supply, and
temperament surely are impacted.<o:p></o:p></b></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial black";">There’s no consistent rhyme or reason
for when or why our med’s so suddenly shut us off, along with access to our
reserves of dopamine, synthetic or otherwise. The room may have gotten too
warm, or cold, or someone said something that activated a stress response in
our bodies, or perhaps we ate protein too close to our dose of pills. Maybe
we’re developing a cold, or infection, a common cause of our PD med’s not
working well. Left untreated, a common GI infection, H-Pylori,(a peptic ulcer)
can totally disable the absorption of our med’s, leaving us essentially
helpless and unable to move. (This just happened again to me for the second
time in three years.) Why? Who knows? We with PD spend a lot of time
researching these things ourselves, and then educating those of our more humble
physicians and specialists who respect our intelligence. Bottom line? It’s not
fair, and these up’s and down’s are like being knocked out of a good dream into
a nightmare, many times each day.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "arial black";">Have I succeeded in shattering </span><span style="color: #290082; font-family: "arial black"; mso-bidi-font-family: Arial;">your
</span><span style="font-family: "arial black";">myth that your neighbor with Parkinson’s is randomly “getting
better” when you see one of us so mobile at a given time? Hopefully this
article has not offended or hurt you, because we both know your intentions are
kind and good. I merely wanted to help you better understand that when I am
doing so well, it’s likely because my pills are working for a welcome but
transitory moment. So next time our paths cross, you may opt to greet me with
either, “Hi, there! Glad to see you’re having a good moment!” or, if you
witness me “off,” you might shake your head in sympathy and say, “Tough, huh?
Can I help with anything?”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "arial black";">I guarantee; you’re not likely to go
wrong with that.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b><i><span style="color: #3b00a4; font-family: "arial black"; mso-bidi-font-family: Arial;">Leonore Gordon, LCSW; </span></i></b><b><span style="color: #040099; font-family: "arial black"; mso-bidi-font-family: Arial;">leonore1234@aol.com<o:p></o:p></span></b></div>
<div class="MsoNormal">
<b><span style="font-family: "arial black";">Leonore Gordon lives in Brooklyn. She is a licensed,
(retired) family therapist; a poet; a poetry educator; a writer; a
Congressional Coordinator for Parkinson Action Network; and a community
organizer. She has an 18-year old son who is away at school, and she is trying
to live independently (with her 11-year old beagle), after her marriage of 26
years ended in 2010. She lost her father to Parkinson’s in 2000; he lived with
the disease for 23 years. She keeps physically and mentally healthy and active
through friendships, activism, and membership in the Brooklyn Parkinson’s
Group, which, along with partnerships with the Mark Morris Dance Group, LIU and
the Bed Stuy Y, provides dance, exercise and singing classes free to people
with Parkinson’s. Her blog, </span></b><b><span style="color: #040099; font-family: "arial black"; mso-bidi-font-family: Arial;">http:// alphapdny.blogspot.com</span></b><b><span style="font-family: "arial black";">,
offers more information about Parkinson’s, and NY City resources recommended
for those with Parkinson’s who live in NYC. Her Parkinson’s Unity Walk team,
‘Brooklyn Parkinson’s Group’ will be walking in the annual Unity Walk in
Central Park on April 16th, and is hoping to raise $10,000.00 for the Unity
Walk, (</span></b><b><span style="color: #040099; font-family: "arial black"; mso-bidi-font-family: Arial;">www.Unitywalk.org</span></b><b><span style="font-family: "arial black";">) to advance research to
cure Parkinson’s.</span></b><span style="font-family: "arial black";"><o:p></o:p></span></div>
<!--EndFragment--></li>
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Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.com2tag:blogger.com,1999:blog-3506753531284902981.post-73101151194385093422016-04-25T18:01:00.000-04:002016-05-26T20:34:40.311-04:00<br />
<div class="p1">
<span class="s1"><span style="font-size: large;">Please read and sign my MoveOn petition about Spiking Prescription Drug Pricing</span></span></div>
<div class="p1">
<span class="s1"><span style="font-size: large;"> <span class="s2"><a href="https://www.facebook.com/leonore.gordon/posts/10209291784800479">https://www.facebook.com/leonore.gordon/posts/10209291784800479</a></span></span></span></div>
<div class="p1">
<span class="s1"><span style="font-size: large;"><br /></span></span></div>
<div class="p1">
<span style="font-size: large;">Are you bewildered and scared by the sudden spike in your prescription drug prices? There's an explanation, and it's not because research to create these drugs costs a lot. It has to do with a cynical set of investments over three years by a handful of big pharm. CEO's who bought small companies with excellent drugs they'd created, trashing the Research depts, and then feeling free in a regulation-free America to spike the prices of hundreds of drugs by ten, fifteen times.</span></div>
<div class="p1">
<span style="font-size: large;"> Please sign and share if you believe we must use every strategy imaginable to make our prescription meds affordable. Read below for brilliant idea attempted in a letter last month to the NIH and HHS written by members of the Progressive wing of the Democrats</span></div>
<div class="p1">
<span style="font-size: large;">https://www.statnews.com/pharmalot/2016/03/28/sanders-cancer-drug-prices/</span></div>
<div class="p2">
<span style="font-size: large;">Petition statement to be delivered to <b>Sylvia Burwell, Secretary of Health & Human Services, Francis Collins, Director of NIH, The United States House of Representatives, The United States Senate, and President Barack Obama</b></span></div>
<div class="p1">
<span class="s1"><span style="font-size: large;">
</span></span></div>
<div class="p3">
<b><span style="font-size: large;">NIH Director Collins & HHS Secretary Burwell: Please Use the Authority Granted You By the 1980 Bayh-Dole Act to Override Drug Patents and Make America's Drugs Affordable Again!</span></b></div>
Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.com0tag:blogger.com,1999:blog-3506753531284902981.post-78339611936439013942016-04-03T16:00:00.000-04:002016-04-05T21:34:15.732-04:00Urgent! Your signatures Needed for my Open Letter to Valeant Pharmaceuticals to Immediately Slash Their Unethical Drug Prices <div align="center" class="MsoNormal" style="text-align: center;">
<div class="p1">
Please sign my Change.org petition. Thank you!<br />
<a href="https://www.change.org/p/chairman-of-valeant-pharmaceutical-board-demand-valeant-pharmaceuticals-reverse-immoral-drug-price-hiking?recruiter=11809113&utm_source=share_for_starters&utm_medium=copyLink">Please sign my petition to ratchet down Valeant's drug prices!</a><br />
Thank you for e-mailing your approval to sign your name to below petition. Please sign the Change.org one, also, as it will be more effective. Thanks!<br />
<br />
My New open letter to Valeant's Board. If you agree, please reply by saying Yes, that I can put your full name, city and state at the bottom of my letter to Valeant. Thank you. Please read below. Leonore </div>
<div class="p1">
Leonore Gordon, LCSW</div>
<div class="p1">
130 8<span class="s1"><sup>th</sup></span> Avenue #3A</div>
<div class="p1">
Brooklyn, NY 11215</div>
<div class="p2">
<span class="s2"><a href="mailto:Leonore1234@aol.com">Leonore1234@aol.com</a></span></div>
<div class="p1">
(718) 783 1986</div>
<div class="p1">
(347) 489 9123</div>
<div class="p3">
<span class="Apple-tab-span"> </span><span class="Apple-tab-span"> </span><span class="Apple-tab-span"> </span><span class="Apple-tab-span"> </span><span class="Apple-tab-span"> </span><span class="Apple-tab-span"> </span><span class="Apple-tab-span"> </span><span class="Apple-tab-span"> </span><span class="Apple-tab-span"> </span><span class="Apple-tab-span"> </span><span class="Apple-tab-span"> </span> </div>
<div class="p3">
<b>04/03/2016</b></div>
<div class="p3">
<b> Urgent Plea from a Patient (One of Thousands) to the Board of Valeant Pharmaceutical as They Ditch and Reconfigure Previous Drug Pricing Policies</b></div>
<div class="p4">
<br /></div>
<div class="p3">
Dear Board Chairman Ingram and Board Members;</div>
<div class="p3">
First, I thank you deeply for removing your now-outgoing CEO, Mr. Michael Pearson and your CFO, Mr. Schiller, the latter for “improper conduct.” <a href="http://www.nytimes.com/2016/03/22/business/valeant-ackman-pearson-earnings.html?smprod=nytcore-iphone&smid=nytcore-iphone-share"><span class="s3">http://www.nytimes.com/2016/03/22/business/valeant-ackman-pearson-earnings.html?smprod=nytcore-iphone&smid=nytcore-iphone-share</span></a></div>
<div class="p3">
My hope is that their departure means that your new management will very quickly bring down the current prices of your present drugs. I read in a recent article, that in 2014 and 2015, according to RX Savings Solutions, you raised the prices on 147 of your drugs, an average of <span class="s2"><b>76% , nearly 33% higher than comparable generics</b></span>. <a href="https://www.statnews.com/pharmalot/2016/03/29/valeant-lessons/"><span class="s3">https://www.statnews.com/pharmalot/2016/03/29/valeant-lesson</span></a>. </div>
<div class="p3">
Members of Valeant's Board, those above-mentioned "business" decisions affect human beings instantly. We flesh-and blood patient/consumers really need those 147 drugs TODAY! I am only one of thousands of sick people who can no longer afford to take these 147 medications which our doctors have prescribed to heal, or, at minimum, to improve our health, and thus the quality of our lives. </div>
<div class="p4">
<br /></div>
<div class="p3">
I’m a 60-year old woman on Medicare disability, living with 16 years of Parkinson’s Disease, and like countless Americans, because of these price hikes, I need, but cannot afford the 2016 prices of your drugs. </div>
<div class="p3">
In my case, one of those drugs is Tasmar, of which you also own its generic, Tolcapone. The other is Xyfaxan, made by Salix, a company you bought last year, and it has no generic alternative. </div>
<div class="p3">
My RX plan, AARP United Health, requires me to pay an incomprehensible $2,960.00 out of pocket each year before they begin to help to pay for my medications, and thus my Rite Aid pharmacist informed me in January that I’d have to pay a jaw-dropping $<span class="s2"><b>2259. for my first 45 pills</b></span> of Tasmar, or an equally unaffordable <span class="s2"><b>$1800. for its generic, Tolcapone</b></span>, (which, as it turned out, because of your price hikes), United Health now recommends I take, instead. Without this drug, my Levodopa meds usually don't kick in and I thus can't move. </div>
<div class="p4">
<br /></div>
<div class="p3">
In late March, I developed a GI problem, which disabled the effectiveness of my Parkinson’s meds, as infections often do. To correct this, my doctor prescribed Xyfaxan, yet another Valeant drug. Its cost to me? <b>For a month’s supply (60 pills): $650.00 </b>at Rite Aid, and <span class="s2"><b>604.00 at Walgreen’s.</b></span> Again, where am I, or anyone, supposed to find an extra $600.00 in my budget? My GP told me that Xyfaxan saved the life of one of his Medicaid patients and, knowing I couldn't afford $604. and angered by your prices, he found me free samples. Are there enough for the whole country? Why not drop the price to an affordable one?</div>
<div class="p3">
How can your company possibly justify these exorbitant prices? Are these drugs made on Mars? And if we patients/consumers can’t afford these prices for a one-month supply, what happens for the rest of the year? </div>
<div class="p3">
I find it difficult to picture ANYONE, even members of your board, who, when confronted with such prices, would not be equally incredulous and horrified.</div>
<div class="p4">
<br /></div>
<div class="p3">
It is equally troubling to me that my United Health RX plan agrees to pay Valeant $2,292.00 for a month’s supply of Xyfaxan. (annual cost is $27,000.)and $3,751.00 for a ONE month’s supply of Tasmar's generic, Tolcapone. (Multiplied by 12, that's a staggering annual cost of $45,012). </div>
<div class="p3">
No wonder that as each year begins, United Health requires that we members spend nearly $3,000.00 before they begin to help us! Your jacked-up prices have increased the cost of everyone's health care, and have made my monthly premiums irrelevant..</div>
<div class="p4">
<br /></div>
<div class="p3">
Are there temporary fixes? Your staff tells customers who call that Valeant has a Patients Assistance Plan, but when mine arrived in the mail, to my disappointment, I was excluded. On page two of your application form, at the bottom, it says that your company excludes anyone receiving Medicare Part D; that meant me. Your PA plan also excludes anyone on HMO plans, and those receiving Veteran’s benefits. What kind of joke is that?</div>
<div class="p3">
Next, people suggested asking my doctor for free samples. None for Tasmar or Tolcapone. Independent plans like Patient Assistance Network? None can pay 1800. for my Tolcapone, either! Nor should they have to! You need to reverse those price increases! </div>
<div class="p4">
<br /></div>
<div class="p3">
In the meantime, the tragic solution for me, (and I suspect for innumerable others) is that I’ve begun preparing to do without the most expensive medicines I need, however much my health may deteriorate as a consequence. For now, (with my doctor's okay) I’m using a pill splitter to break my remaining Tasmar into tiny pieces. But on a larger scale, what will be the long-term price our country’s economy will pay as thousands of North Americans sacrifice our health in order to pay our monthly rent and food bills? It seems pretty clear to me; as we get sicker, we'll require way higher and more costly levels of care, heavily burdening our nation’s economy.</div>
<div class="p4">
<br /></div>
<div class="p3">
As Valeant stocks crashed in February and March, its top management told Congress, shareholders and investors (& the media) that it will purportedly no longer buy up small pharmaceutical companies, drop their R&D components and then cynically jack up its drugs prices based on its desired revenue for the coming year. This was a policy revealed by memos subpoenaed and exposed by a Congressional Committee. (http://www.cbc.ca/beta/news/business/valeant-subpoenaed-in-u-s-for-drug-pricing-1.3272009). </div>
<div class="p4">
<br /></div>
<div class="p3">
Fortunately for the public, all of these antics got your company in trouble with Congress, and with several Special Prosecutors. http://www.cbc.ca/news/business/drug-prices-shkreli-valeant-turing-1.3430639</div>
<div class="p3">
Last week, I heard that on April 27th, the Senate Committee on Aging has issued a subpoena to deposed Valeant CEO, Michael Pearson, to testify in a public hearing on April 27<span class="s1"><sup>th</sup></span>. <a href="http://www.aging.senate.gov/press-releases/chairman-collins-ranking-member-mccaskill-announce-third-hearing-in-senate-aging-committees-bipartisan-investigation-"><span class="s3">http://www.aging.senate.gov/press-releases/chairman-collins-ranking-member-mccaskill-announce-third-hearing-in-senate-aging-committees-bipartisan-investigation-</span></a></div>
<div class="p4">
<br /></div>
<div class="p4">
<br /></div>
<div class="p3">
I watched and listened (on my computer) with great interest to the February hearings as the Congressional Committee on Accountability questioned Valeant CFO Schiller re. Valeant’s price-hiking policies. I found these hearings at this link: <a href="https://oversight.house.gov/hearing/developments-in-the-prescription-drug-market-oversight/"><span class="s3">https://oversight.house.gov/hearing/developments-in-the-prescription-drug-market-</span></a></div>
<div class="p3">
Of particular interest, was Schiller's response to being challenged by a committee member that even the NIH could not afford to do clinical trials with one of your drugs. His response was quick; "I'll take care of that right away." My immediate reaction was that if public opinion was that important to your company, perhaps you could be persuaded to just as speedily lower the prices of all 147 unreasonably priced medications if word got out that you were open for negotiation. </div>
<div class="p3">
<br /></div>
<div class="p3">
Thus, my next request may seem naïve and absurd, but think, perhaps, of the long-them PR for your presently disgraced company: <b>Please</b> take immediate action to review and slash the prices of all of your medications to prices the average working North American can afford. Next, make a public announcement that you are doing so. As you rethink your purpose and mission, you can reassure the public that we can stop worrying daily about how to pay for our needed Valeant drugs, choosing between buying food, paying for heat, or whether not we and our children can use your medications. In doing so, you can also repair your shattered reputation, and lead the pharmaceutical industry away from greed and profit-motive, becoming instead a standard-bearer for a new generation of pharmaceutical companies who will view their mission as researching and developing new medicines, and ultimately filling the unmet health needs of their customers. If you feel the pride in making drugs to save or improve lives, I imagine that you as a company would obviously then want to make them possible for the public to afford! </div>
<div class="p3">
Doesn’t that make sense? Thank you. </div>
<div class="p4">
<br /></div>
<div class="p3">
Sincerely, and in urgency,</div>
<div class="p3">
Leonore Gordon, LCSW</div>
<div class="p3">
Note: Letter above is being cc’ed to members of Congress, AARP, Wall Street Journal, The New York Times, NPR, and several other media outlets.</div>
<div class="p4">
<br /></div>
<div class="p3">
(This letter is written on behalf of the following members of my Parkinson’s & friends community)</div>
<div class="p3">
Myra Kooy; Bklyn, NY</div>
<div class="p3">
Cynthia Gilbertson; Bklyn., NY </div>
<div class="p3">
Ruth Bromberg; NYC, NY </div>
<div class="p3">
Jill Ritter; NY </div>
<div class="p3">
Jean Burns; Sun Lakes, Arizona </div>
<div class="p3">
Ellen Holzman; Roslyn Hts., NY </div>
<div class="p3">
Gary Grafaloff; Marlboro, NJ </div>
<div class="p3">
Karen Raphael; Brooklyn, NY</div>
<div class="p3">
<b>Linda Herman; Amherst, NY</b></div>
<div class="p3">
Larry Weiss MD, San Francisco, CA </div>
<div class="p3">
EMAN Thabteh; Brooklyn, NY</div>
<div class="p3">
Gys Kooy; Mahwah, NJ</div>
<div class="p3">
Jeannette Bos; Carlstadt, NJ</div>
<div class="p3">
Pamela Quinn; Nyc, NY</div>
<div class="p3">
Leslie Ann Kilpatrick; Brooklyn, NY</div>
<div class="p3">
Peggy Willocks; Johnson City, Tennessee</div>
<div class="p3">
Karen Scheyer; Brooklyn, NY</div>
<div class="p3">
Miriam Gordon, Medford, Mass. </div>
<div class="p3">
Dava Weinstein; NYC, NY</div>
<div class="p3">
Dorothy Calvani, NYC, NY</div>
<div class="p3">
Bruce Diamond; NYC, NY</div>
<div class="p3">
Eilene Evans; Brooklyn, NY</div>
<div class="p3">
Sara Schwab; NY</div>
<div class="p3">
Judith Dean; Brooklyn, NY</div>
<div class="p3">
Aaron Cohen; Brooklyn, NY</div>
<div class="p3">
John Iozzio; Brooklyn, NY</div>
<div class="p3">
Judith Ross; Brooklyn, NY</div>
<div class="p3">
James Ross;Brooklyn,NY</div>
<div class="p3">
Jane Levine; NYC, NY</div>
<div class="p3">
Edward Ryder, Greenlawn, NY</div>
<div class="p3">
Rebecca States; Queens, NY</div>
<div class="p3">
John Iozzio; Brooklyn, NY</div>
<div class="p3">
Helen Jacobs; NYC, NY</div>
<div class="p3">
Miriam Gordon; Medford, Mass</div>
<div class="p3">
Pat Bard; Brooklyn, NY</div>
<div class="p3">
Roger Bard, Brooklyn NY</div>
<div class="p3">
Ron Bromberg; NY, NY</div>
<div class="p3">
Lea Frischer; NYC, NY</div>
<div class="p3">
Maryanne Rudin, Brooklyn, NY</div>
<div class="p3">
Helen Salinger, NYC, NY</div>
<div class="p3">
Jennifer Ire, Brooklyn, NY</div>
<div class="p3">
Laurence Levine, NYC, NY</div>
<div class="p3">
Elyse Mendel; Brooklyn, NY</div>
<div class="p3">
Ejun Dean; Brooklyn, NY 11215</div>
<div class="p3">
Yunah Hong; Brooklyn, NY 11215</div>
<div class="p3">
Sukyung Hong; Brooklyn, NY 11215</div>
<div class="p3">
Tom Dean; Brooklyn, NY</div>
<div class="p3">
Randi Korn; Alexandria, Va.</div>
<div class="p3">
Paul Basista; Brooklyn; NY</div>
<div class="p3">
Rebecca States, Queens, NY</div>
<div class="p3">
Rasha Thabteh, Brooklyn, NY</div>
<div class="p3">
Ruth Becker; Richmond, Me.</div>
<div class="p3">
Joanna Foster; Queens, NY</div>
<div class="p3">
Debbie Cyrus; Brooklyn, NY</div>
<div class="p3">
Joy Esterberg; NYC, NY</div>
<div class="p3">
David Leventhal; Brooklyn, NY</div>
<div class="p3">
Bill Miller, Brooklyn, NY </div>
<div class="p3">
Susan PLath; Hartsdale,NY</div>
<div class="p3">
Karen Burkhardt: Brooklyn, NY</div>
<div class="p3">
Les Mills; Brooklyn, NY</div>
<div class="p3">
Kristin Kramer, Brooklyn, NY</div>
<div class="p3">
Erwin Kooy; Mahwah, NJ</div>
<div class="p3">
Willie Wallendale, Flemington, NJ</div>
<div class="p3">
Wayne Williams; Brooklyn, NY</div>
<div class="p3">
Susan and Michael Kartzmer; W.Nyack, NY</div>
<div class="p3">
Yitzhak Buxbaum; Brooklyn, NY</div>
<div class="p3">
Ruth Scheinfeld; Brooklyn, NY</div>
<div class="p3">
Ruth Becker; Richmond, Maine</div>
<div class="p3">
Karen Burkhardt; Brooklyn, NY</div>
<div class="p3">
Melanie Kartzmer; Denver, Co. </div>
<div class="p3">
Joanne Sampson; S. .Norwalk, Ct. </div>
<div class="p4">
Sandra Abramson; Bklyn. NY<br />
Janice Wang; San Luis Obispo, CA</div>
<div class="p3">
Nancy Dreyer; Belmont, MA</div>
<div class="p3">
Susan Davis Pereira; NYC, NY<br />
Robert Yuen; Brooklyn, NY</div>
<div class="p4">
<br /></div>
<div class="p3">
Most recent articles re Valeant: </div>
<div class="p4">
<br /></div>
<div class="p5">
<span class="s4"> <a href="https://www.statnews.com/pharmalot/2016/03/29/valeant-lessons/"><span class="s2">https://www.statnews.com/pharmalot/2016/03/29/valeant-lessons</span></a></span></div>
<div class="p5">
<span class="s4"> <a href="http://www.newyorker.com/magazine/2016/04/04/inside-the-valeant-scandal"><span class="s2">http://www.newyorker.com/magazine/2016/04/04/inside-the-valeant-scandal</span></a></span></div>
<div class="p5">
<span class="s2"><a href="http://www.sanders.senate.gov/newsroom/press-releases/lawmakers-to-nih-and-hhs-act-now-on-drug-affordability">http://www.sanders.senate.gov/newsroom/press-releases/lawmakers-to-nih-and-hhs-act-now-on-drug-affordability</a></span><span class="s4"> </span></div>
<div class="p5">
<span class="s2"><a href="http://www.wsj.com/articles/valeants-outgoing-ceo-to-testify-at-senate-hearing-on-drug-prices-1459193094">http://www.wsj.com/articles/valeants-outgoing-ceo-to-testify-at-senate-hearing-on-drug-prices-1459193094</a></span></div>
<br />
<div class="p5">
<span class="s2"><a href="http://www.npr.org/sections/health-shots/2016/03/29/471867695/physician-group-calls-on-government-to-rein-in-drug-prices">http://www.npr.org/sections/health-shots/2016/03/29/471867695/physician-group-calls-on-government-to-rein-in-drug-prices</a></span></div>
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Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.com0tag:blogger.com,1999:blog-3506753531284902981.post-57609484823990161522016-03-29T16:08:00.003-04:002016-05-12T18:41:07.930-04:00Register for the Fourth World Parkinson Congress in Portland, Oregon, 2016: September 20-23!!! http://www.wpc2016.org/<div align="center" class="MsoNormal" style="text-align: center;">
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<span style="font-family: Arial;">Join us in Portland, Oregon for the 4th World Parkinson Congress </span></h1>
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<span style="font-size: 14px;">More than 3,500 people from 65 countries will attend the <strong>WPC 2016</strong> in Portland, OR to learn about cutting edge science, clinical research and comprehensive care from some of the most renowned health professionals, researchers, and advocates globally. <a href="http://www.wpc2016.org/?page=RegFees" style="color: #d93921; text-decoration: none;" target="_blank"><strong><span style="text-decoration: underline;">Registration is open NOW!</span></strong></a><strong><br /></strong></span></div>
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Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.com3tag:blogger.com,1999:blog-3506753531284902981.post-22679112138721373822016-03-14T19:45:00.005-04:002016-05-12T20:45:33.311-04:00Open Letter to Valeant Pharmaceutical about Tasmar price hike: 2259.00 for 45 pills! <div align="center" class="MsoNormal" style="text-align: center;">
<span style="font-size: 11.0pt;">Leonore Gordon, LCSW<o:p></o:p></span></div>
<div align="center" class="MsoNormal" style="text-align: center;">
<span style="font-size: 11.0pt;">130 8<sup>th</sup> Avenue #3A<o:p></o:p></span></div>
<div align="center" class="MsoNormal" style="text-align: center;">
<span style="font-size: 11.0pt;">Brooklyn, NY 11215<o:p></o:p></span></div>
<div align="center" class="MsoNormal" style="text-align: center;">
<span style="font-size: 11.0pt;"><a href="mailto:Leonore1234@aol.com">Leonore1234@aol.com</a><o:p></o:p></span></div>
<div align="center" class="MsoNormal" style="text-align: center;">
<span style="font-size: 11.0pt;">(718) 783 1986<o:p></o:p></span></div>
<div align="center" class="MsoNormal" style="text-align: center;">
<span style="font-size: 11.0pt;">(347) 489 9123<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 11.0pt;"><span style="mso-tab-count: 9;"> </span>3/14/2016<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: 11.0pt;">Re: a personal plea to
Valeant Pharmaceutical<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-size: 11.0pt;">Dear CEO Pearson and members of Valeant’s Board of
Directors;<o:p></o:p></span></b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="line-height: 115%;">
<span style="font-size: 11.0pt; line-height: 115%;">First, I hope you are feeling better after your long bout
with pneumonia, Mr. Pearson.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 115%;">
<span style="font-size: 11.0pt; line-height: 115%;">I am a 60-year woman with 16 years of Parkinson’s, receiving
Social Security Disability, who cannot afford to pay for one of your products, <b style="mso-bidi-font-weight: normal;">Tasmar,</b> which I very much need, as it really
helps my other Parkinson’s meds to kick in. Because of <b style="mso-bidi-font-weight: normal;">Tasmar</b>, I can walk, be independent, exercise, dance, lead my
Parkinson’s support group, and participate in the other activities that help me
get through the day. A few weeks ago, my Rite Aid pharmacist called me in
consternation to ask if I knew the 2016 price for Tasmar? She went on to inform
me that it would cost me <b style="mso-bidi-font-weight: normal;">$2,259.00 for a
one-month supply of 45 pills.</b> I was flabbergasted!!!!!<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 115%;">
<b style="mso-bidi-font-weight: normal;"><span style="font-size: 11.0pt; line-height: 115%;">What kind of human being
puts a price like that on any medicine? And with what justification?? Is it
made on Mars? Who on earth can afford that?<o:p></o:p></span></b></div>
<div class="MsoNormal" style="line-height: 115%;">
<b style="mso-bidi-font-weight: normal;"><span style="font-size: 11.0pt; line-height: 115%;">Last year Tasmar cost
an equally unaffordable $1800.00, (quite a price hike!) </span></b><span style="font-size: 11.0pt; line-height: 115%;">but I got lucky when a friend gave me
a bottle of her Tasmar because she no longer could take it. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 115%;">
<br /></div>
<div class="MsoNormal" style="line-height: 115%;">
<b style="mso-bidi-font-weight: normal;"><u><span style="font-size: 11.0pt; line-height: 115%;">Nor can I afford
Tasmar’s generic, Tolcapone, costing me $1800.00 for the same number of pills</span></u></b><b style="mso-bidi-font-weight: normal;"><span style="font-size: 11.0pt; line-height: 115%;">. <u>Tolcapone is a product made by Oceanside Pharmaceutical, owned by
Valeant. </u></span></b><u><span style="font-size: 11.0pt; line-height: 115%;">T</span></u><span style="font-size: 11.0pt; line-height: 115%;">he price is the same for Par
Pharmaceutical’s version of Tolcapone. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 115%;">
<b style="mso-bidi-font-weight: normal;"><span style="font-size: 11.0pt; line-height: 115%;">Furthermore, Valeant’s
purported Patient Assistance program for Tasmar excludes those of us who
receive Medicare Part D</span></b><span style="font-size: 11.0pt; line-height: 115%;">, which I grimly read as I got to the bottom of page 2 of your
application form. Do you really believe <b style="mso-bidi-font-weight: normal;">we</b>
in those excluded categories can afford 2259.00 for a bottle of pills?<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 115%;">
<br /></div>
<div class="MsoNormal" style="line-height: 115%;">
<b style="mso-bidi-font-weight: normal;"><span style="font-size: 11.0pt; line-height: 115%;">Like so many in the US
and Canada, I can’t take this medication I need because I can’t afford it.</span></b><span style="font-size: 11.0pt; line-height: 115%;"> No one in my world has either
$1800.00 or $1500.00 set aside for a needed vial of pills for one month. Perhaps
that price feels reasonable to you and members of your board, but not in my
world. When I researched Valeant on the Internet, seeking a Patient Assistance
program, I stumbled on innumerable news reports that Valeant is actively under
fire for its unethical, inhumane arbitrary price hikes from multiple arenas,
including by the<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 115%;">
<span style="font-size: 11.0pt; line-height: 115%;">Congressional committee on Accountability and Government
Reform. I watched the Feb.4<sup>th</sup> hearings online the other day, as the bi-partisan
committee interviewed your temporary replacement, Mr. Schiller. I was intrigued
to see him promise to make a quick phone call to the NIH after being told they
couldn’t afford to include one of your heart medications, promising to correct
that problem.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 115%;">
<br /></div>
<div class="MsoNormal" style="line-height: 115%; margin-bottom: 11.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="font-size: 11.0pt; line-height: 115%;">If Public Relations and “image” was important enough
to your company that you dropped the prices of two of your heart drugs after
being scolded by a Congressional Committee, why not do a huge turn-around and
announce a Public Relations campaign to drop the prices on<b style="mso-bidi-font-weight: normal;"><u> all of your pharmaceutical products </u></b>so that people like me,
my friends, and millions of others can afford the medicines we need? <b style="mso-bidi-font-weight: normal;">And I don’t mean a PR campaign like your
already existing “Patient Assistance Program” which, as I referred to earlier,
excludes people receiving Medicare Part D, veterans receiving Veterans’
Assistance, and others on HMO’s. In a news article, I read the memo written by</b></span><b style="mso-bidi-font-weight: normal;"><span style="color: #1a1a1a; font-family: "helvetica"; font-size: 20.0pt; line-height: 115%;"> </span></b><b style="mso-bidi-font-weight: normal;"><span style="color: #1a1a1a; font-family: "helvetica"; font-size: 11.0pt; line-height: 115%;">Valeant
marketing executive </span></b><b style="mso-bidi-font-weight: normal;"><span style="font-size: 11.0pt; line-height: 115%;">Jeff Strauss, referring to this
Patient Assistance initiative, justifying your inhumane drug costs, by saying </span></b><b style="mso-bidi-font-weight: normal;"><span style="color: #1a1a1a; font-family: "helvetica"; font-size: 11.0pt; line-height: 115%;">"These
patients are not profitable for Valeant, therefore the price increases offset
the costs associated with supporting this initiative... Kind of hard to paint
us as greedy if we have removed financial barriers for patients." <u>This
does not look good to your investors, Congress, <span style="mso-spacerun: yes;"> </span>or the public.<o:p></o:p></u></span></b></div>
<div class="MsoNormal" style="line-height: 115%; margin-bottom: 11.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1a1a1a; font-family: "helvetica"; font-size: 11.0pt; line-height: 115%;">Last week, someone sent me a link to Hillary Clinton’s new tv ad
targeting Valeant’s price-hiking as “predatory.” I know your stock value
dropped dramatically since being investigated, and since Clinton’s commercial
aired, but before you drop the Neurology unit of your company, or your
pharmaceutical component, why not seriously go public with repentant new
policies dropping all of your drug prices to humane ones your child’s teacher
can afford, and apologizing for your “depraved indifference” to us regular
people out there, and thus distinguish yourselves from the arrogance of
Turing’s Shkreli, who truly is a villain? Mr. Pearson, perhaps you could say
you had an epiphany while lying ill, especially after seeing your drug costs?<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 115%; margin-bottom: 11.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1a1a1a; font-family: "helvetica"; font-size: 11.0pt; line-height: 115%;">Please do something soon, as I really need my medication, and
I’m not alone. I will be cc’ing this letter to the NY Times, the Wall Street
Journal, and several other news outlets. Thank you. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 115%; margin-bottom: 11.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1a1a1a; font-family: "helvetica"; font-size: 11.0pt; line-height: 115%;">Sincerely,<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 115%; margin-bottom: 11.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
<span style="color: #1a1a1a; font-family: "helvetica"; font-size: 11.0pt; line-height: 115%;">Leonore Gordon, LCSW<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 115%; margin-bottom: 11.0pt; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;">
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Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.com1tag:blogger.com,1999:blog-3506753531284902981.post-53531543946985643152016-03-14T19:42:00.002-04:002016-05-12T18:41:07.928-04:00Join OUr 2016 Unity Walk Team!<div id="header" style="background: url("../teamraiser-themes/theme1/images/bg-pattern-diagonal.png") rgb(229, 247, 244); box-sizing: border-box; color: #4d525a; font-family: Arial, Helvetica, Verdana, sans-serif; font-size: 14px; line-height: 20px;">
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<a href="http://support.unitywalk.org/site/TR?fr_id=1040&pg=entry" style="background: 0px 0px; box-sizing: border-box; color: blue; display: block; font-family: Arial, Helvetica, Verdana, sans-serif; height: 79.1875px; position: relative; text-decoration: none; width: 340px;" target="Parkinson’s Unity Walk"><img alt="Parkinson’s Unity Walk" src="http://support.unitywalk.org/images/content/pagebuilder/PUW_logo-text.jpg" style="border: 0px none; bottom: 0px; box-sizing: border-box; display: block; left: 0px; margin: auto 0px; max-width: 100%; position: absolute; right: 0px; top: 0px; vertical-align: middle;" /></a></h1>
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<li style="box-sizing: border-box; display: block; float: left; font-size: 10pt; position: relative;"><a href="https://twitter.com/unitywalk" style="background: 0px 0px; box-sizing: border-box; color: #4d525a; display: block; margin: 12px 0px 0px; padding: 3px 8px 3px 5px; position: relative; text-decoration: none;" target="_blank" title="Twitter"><img alt="Twitter" class="tr-social-icon" src="http://support.unitywalk.org/teamraiser-themes/theme1/images/icon-twitter.png" style="border: 0px none; box-sizing: border-box; max-width: none; vertical-align: middle;" /></a></li>
<li style="box-sizing: border-box; display: block; float: left; font-size: 10pt; position: relative;"><a href="http://www.instagram.com/unitywalk" style="background: 0px 0px; box-sizing: border-box; color: #4d525a; display: block; margin: 12px 0px 0px; padding: 3px 8px 3px 5px; position: relative; text-decoration: none;" target="_blank" title="Instagram"><img alt="Instagram" class="tr-social-icon" src="http://support.unitywalk.org/images/content/pagebuilder/instagram.jpg" style="border: 0px none; box-sizing: border-box; max-width: none; vertical-align: middle;" /></a></li>
<li style="box-sizing: border-box; display: block; float: left; font-size: 10pt; position: relative;"><a href="http://www.youtube.com/user/UnityWalk" style="background: 0px 0px; box-sizing: border-box; color: #4d525a; display: block; margin: 12px 0px 0px; padding: 3px 8px 3px 5px; position: relative; text-decoration: none;" target="_blank" title="YouTube"><img alt="YouTube" class="tr-social-icon" src="http://support.unitywalk.org/teamraiser-themes/theme1/images/icon-youtube.png" style="border: 0px none; box-sizing: border-box; max-width: none; vertical-align: middle;" /></a></li>
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<li style="box-sizing: border-box; display: block; float: left; font-size: 10pt; position: relative;"><a href="http://support.unitywalk.org/site/TR?fr_id=1040&pg=entry" style="background: 0px 0px; box-sizing: border-box; color: white; display: block; font-size: 13px; padding: 15px; position: relative; text-decoration: none; text-transform: uppercase;" target="_parent">EVENT HOME</a></li>
<li style="box-sizing: border-box; display: block; float: left; font-size: 10pt; position: relative;"><a href="http://support.unitywalk.org/site/Donation2?df_id=1440&PROXY_ID=1040&PROXY_TYPE=21&FR_ID=1040" style="background: 0px 0px; box-sizing: border-box; color: white; display: block; font-size: 13px; padding: 15px; position: relative; text-decoration: none; text-transform: uppercase;" target="_parent">DONATE</a></li>
<li style="box-sizing: border-box; display: block; float: left; font-size: 10pt; position: relative;"><a href="http://support.unitywalk.org/site/TRR/Walk/General?fr_id=1040&pg=tfind" style="background: 0px 0px; box-sizing: border-box; color: white; display: block; font-size: 13px; padding: 15px; position: relative; text-decoration: none; text-transform: uppercase;">REGISTER</a></li>
<li style="box-sizing: border-box; display: block; float: left; font-size: 10pt; position: relative;"><a href="http://www.unitywalk.org/content.php?ID=294" rel="external index follow me" style="background: 0px 0px; box-sizing: border-box; color: white; display: block; font-size: 13px; padding: 15px; position: relative; text-decoration: none; text-transform: uppercase;" target="_blank">ABOUT EVENT</a></li>
<li style="box-sizing: border-box; display: block; float: left; font-size: 10pt; position: relative;"><a href="http://support.unitywalk.org/site/TR?fr_id=1040&pg=informational&sid=1000" rel="index follow" style="background: 0px 0px; box-sizing: border-box; color: white; display: block; font-size: 13px; padding: 15px; position: relative; text-decoration: none; text-transform: uppercase;" target="_parent">CONTACT</a></li>
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Parkinson's Unity Walk</h2>
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Unity Walk collage from 2015 Walk</div>
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BROOKLYN PARKINSONS GROUP AND FRIENDS</h3>
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<span style="box-sizing: border-box; font-family: "arial" , "helvetica" , "verdana" , sans-serif; font-size: 16px;"><span style="box-sizing: border-box; font-weight: 700;"><em style="box-sizing: border-box;">Join/support our team’s efforts!</em></span></span></div>
<div style="box-sizing: border-box; font-family: Lato, 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 10pt; margin-bottom: 10px;">
<span style="box-sizing: border-box; font-family: "arial" , sans-serif; font-size: 10pt;">Welcome, loyal former and hopefully new members of TEAM Brooklyn Parkinsons Group & Friends! We need your donations and support to fund research to cure our disease! Last year nearly 30 people joined our team, the most we'd ever had, and all of us together raised 16,900.00. Let's try to reach 17,000 this year! We need all of you to help! We are participating in the Parkinson’s Unity Walk in New York's Central Park, to help raise awareness and funds for Parkinson’s disease research. </span></div>
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<span style="box-sizing: border-box; font-family: "arial" , sans-serif; font-size: 10pt;">This year, Unity Walk organizers asked for April 30th to avoid Passover, but NY City gave them the fourth Saturday, as usual, and they were unable to change that. We are all very sorry about that, but many of us who celebrate the holiday are still, at the very least, still raising money for a cure for our disease.<br style="box-sizing: border-box; font-family: Arial, Helvetica, Verdana, sans-serif;" /><br style="box-sizing: border-box; font-family: Arial, Helvetica, Verdana, sans-serif;" />BPG & Friends have again formed this team because more than one million people in the U.S. are living with Parkinson’s disease. The cause is unknown and while treatment options help to manage symptoms, currently there is no cure. Every walker and donor will bring the Parkinson's community one step closer to finding the cause of and cure for Parkinson’s disease. <br style="box-sizing: border-box; font-family: Arial, Helvetica, Verdana, sans-serif;" /><br style="box-sizing: border-box; font-family: Arial, Helvetica, Verdana, sans-serif;" />Please either join our BPG team and forward this e-mail (or create your own) to your own friends and family, or please simply make a donation. 100% of donations go to research. Thanks! Your trustworthy capain, Leonore Gordon</span></div>
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<span style="background-color: white; color: #4d525a; font-family: "arial" , "helvetica" , "verdana" , sans-serif; font-size: 14px; line-height: 20px;">- See more at: http://support.unitywalk.org/site/TR/Walk/General?team_id=1158&pg=team&fr_id=1040#sthash.lexpDxs3.dpuf</span>Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.com1tag:blogger.com,1999:blog-3506753531284902981.post-7126849357064424402015-08-04T16:58:00.001-04:002015-08-04T16:58:39.747-04:00Useful Informational Web pagesWordl Parkinson Congress podcasts: http://www.worldpdcoalition.org/?page=CountdownPodcasts<br />
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National Parkinsons Foundation www.Parkinson.org:<br />
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Michael J Fox Foundation: Ask your MD https://www.michaeljfox.org/understanding-parkinsons/ask_md.html<br />
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Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.com0tag:blogger.com,1999:blog-3506753531284902981.post-29417606934482734172015-02-06T14:49:00.000-05:002016-05-26T19:57:28.303-04:00Robin Williams:Depression, Suicide & Our Shared Parkinson'sRobin Williams: Depression, Suicide and Our Shared Parkinson’s<br />
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Like millions of others, I’ve found myself deeply sad and surprisingly preoccupied with Robin Williams’ suicide, scouring news articles and brooding over possible explanations for his “tipping point.” (As a licensed CSW and family therapist, retired due to my own Parkinson’s, this kind of speculation is unsurprising.) I loved Robin Williams! He was such a brilliant, funny, gifted comic and improvisator, and his performance at Brooklyn’s BAM 6 months after 9/11 gave me my first belly laughs since that day of horror. For that, I will be forever indebted to him. But, the news today, as I awoke from an afternoon nap, that Robin Williams was in the early stages of Parkinson’s Disease, blew me away.<br />
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On Robin Williams: Depression, Suicide and Our Shared Parkinson’s<br />
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Like millions of others, I’ve found myself deeply sad and surprisingly preoccupied with Robin Williams’ suicide, scouring news articles and brooding over possible explanations for his “tipping point.” (As a licensed CSW and family therapist, retired due to my own Parkinson’s, this kind of speculation is unsurprising.) I loved Robin Williams! He was such a brilliant, funny, gifted comic and improvisator, and his performance at Brooklyn’s BAM 6 months after 9/11 gave me my first belly laughs since that day of horror. For that, I will be forever indebted to him. But, the news today, as I awoke from an afternoon nap, that Robin Williams was in the early stages of Parkinson’s Disease, blew me away.<br />
It was a devastating revelation, because my personal guess is that Williams wasn't told that depression is one of the lesser-known, but common, and easily treated Parkinson's symptoms, as I learned early into my own PD experience. (I was diagnosed 15 years ago). His suicide is such a terrible, terrible tragedy, and a wake-up call to physicians and institutions of higher education to educate themselves, their trainees, and the general public about the many non-motor, debilitating symptoms which can signal the arrival of young-onset-Parkinson's, especially in adults over 30. Not doing so is patently and ethically irresponsible and potential dangerous medical practice, as unrecognized organic, treatable depression with identifiable organic origins can lead to suicide.<br />
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These earliest symptoms of Parkinson’s -not infrequently-can include insomnia, depression, apathy, anxiety, the loss of a sense of smell, a softening of the voice, a stiffening of facial muscles (often called “a facial mask”), fatigue, and the gradual appearance of slow cognitive changes which can resemble Attention Deficit Disorder. These new symptoms can feel quite unsettling to those used to<br />
highly effective functioning in their work and home lives, because multi-tasking skills can often begin to go downhill as Parkinson’s takes root in the nervous system. Many people who are quite successful in their careers, (like Robin Willams, I suspect,) can feel mystified by a growing depression or new anxieties that may seem oddly disconnected from an otherwise relatively happy life. In addition, those who have been previously highly competent and organized can begin to find the completion of tasks somewhat difficult, and experience a new and puzzling sense of disorganization. Their intelligence and creativity is still available to them, but they inaccurately interpret these new behaviors as the onset of early Alzheimer’s, and, frightened, keep silent about these changes. Silence and hidden distress about one’s possible mental deterioration can lead to thoughts or acts of suicide.<br />
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Four years into my own PD diagnosis, I was lucky enough to attend a presentation at Beth Israel Hospital in NYC, about cognitive changes being part of a common Parkinson’s package. These<br />
changes can include depression (which can appear as crankiness), and a loss of motivation and apathy. The presenters emphasized that not treating these syndromes can interfere with our ability to keep ourselves otherwise healthy, and with our relationships with those who we live with, along with our other support systems. I recognized some of this to be true in my case, and began treatment with an anti-depressant. Two months later, I was back to my old busy self; parent of a special-needs, pre-teenager; a part-time, private-practice family therapist; a resident-poet in the public schools; a writer; and a political activist. My new treatment also gave me the energy and hopefulness to attend the new, free Parkinson’s dance classes offered by Brooklyn Parkinsons Group at the Mark Morris Dance building. My Parkinson’s still slowed me down, but, depression now lifted, I felt able to take on the world again, and do what I needed to do to live as fully as I could.<br />
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The simple truth is this: young, working, vital folks in their 30’s, 40’s, 50’s and 60’s can develop Parkinson’s; it is not only a disease of the elderly! Furthermore, a shaky hand (tremor), is not present in everyone's PD, but many lesser known motor and cognitive symptoms can be evident, including all of those mentioned above. Thus, for a patient to report the perplexing appearance of any of these aforementioned cognitive and emotional distresses, coupled with a slowed gait, or the softening of her/his voice, or a friend's observation of a limp, or one arm not swinging when one walks, or one hand not typing accurately, anymore, or one arm no longer accurately throwing a ball, can serve as an alarm to recommend a consultation with a Movement Disorder Neurologist in order to diagnose, and hopefully treat, possible Parkinson's Disease.<br />
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Tragically, most physicians, and the general public, incorrectly believe that Parkinson’s is best represented by the stereotype of an old person shuffling along with a shaking hand or arm, and thus many miss the disease’s other earliest, pre-motor manifestations in people as young as those in their thirties. Because physicians are rarely trained to recognize these other indicators, far too many in my Parkinson’s community report numerous lost years of Parkinson’s treatment-including the vital recommendation to begin a consistent exercise regimen to slow down disease progression. Often, I’m told, physicians tell these younger patients reporting an inexplicable growing sense of general anxiety, low-level depression, and fatigue, that their problem is psychological. This is simply unacceptable.<br />
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In my opinion, with any patient presenting reports of depression, all clinical physicians need to be trained to do a full physical examination of these patients, whether they be elderly, non-elderly, middle-aged, or in their child-bearing years. Reports of depression without obvious external sources should require the physician's requesting the patient for a close family’s member’s report of any other recently observed new symptoms. This could reveal a possibly early onset of what many refer to as “Young-Onset Parkinson’s.” As we’ve just learned from Robin Williams’ story, this could make a life or death differenceLeonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.com0tag:blogger.com,1999:blog-3506753531284902981.post-16044730877679390342015-02-06T14:48:00.000-05:002016-05-26T19:57:28.301-04:00Lesser Known Symptoms, and Lexicon, of Persons with Parkinson's Disease<div align="center" class="FreeForm" style="margin-bottom: 5.0pt; margin-left: 0in; margin-right: 0in; margin-top: 5.0pt; text-align: center;">
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="color: windowtext; font-size: 14.0pt;"><span style="mso-spacerun: yes;"> </span>Leonore Gordon,
LCSW<o:p></o:p></span></i></b></div>
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<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="color: windowtext; font-size: 14.0pt;">130 8th Avenue #3A<o:p></o:p></span></i></b></div>
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<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="color: windowtext; font-size: 14.0pt;">Brooklyn, NY 11215<o:p></o:p></span></i></b></div>
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<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="color: windowtext; font-size: 14.0pt;"><a href="mailto:leonore1234@aol.com"><span style="color: windowtext;">leonore1234@aol.com</span></a><o:p></o:p></span></i></b></div>
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<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="color: windowtext; font-size: 14.0pt;">(718) 783 1986 </span></i></b><br />
<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="color: windowtext; font-size: 14.0pt;">(347) 489 9123<o:p></o:p></span></i></b></div>
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<b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u><span style="color: windowtext; font-size: 14.0pt;">Lesser-Known
Symptoms, and Lexicon, of Persons with Parkinson's</span></u></i></b><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="color: windowtext; font-size: 14.0pt;"><o:p></o:p></span></i></b></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: windowtext; font-size: 14.0pt;"><span style="mso-spacerun: yes;"> </span></span></b><span style="color: windowtext; font-size: 14.0pt;">Most members of the general public,
along with most health-care providers who do not specialize in movement
disorders, are aware of the hand tremors and the slow, shuffling gait typical
of the more advanced stages of PD, usually the most familiar characterizations
of PWP’s (Persons with Parkinson’s.) Many, however, seem to be far less
familiar with the wide array of other symptoms and issues common to patients
with “Early-Onset Parkinson’s.” These symptoms need to be recognized in order
to more effectively treat those of us with PD. Additionally, there is a
short-handed lexicon often used within the PD population; one which can require
translation in order to avoid confusion. The phrase, "I'm going
'off'" (ie. "My medication is wearing off and I'm about to be barely
able to move") can be easily misconstrued by a health care provider to
mean, (as one PT student told me), that the speaker may be "about to act
crazy."<span style="mso-spacerun: yes;"> </span>Likewise, "I'm
frozen"<span style="mso-spacerun: yes;"> </span>(ie. "I can't move at
all) can be equally misinterpreted to mean, "Close the windows" or
"Turn off the A/C." The following list roughly outlines some, (but
not all) of these above-mentioned symptoms, issues, and commonly used terms.
All of the symptoms listed below can appear intermittently throughout each day,
vary widely with each person, and can be both preceded and followed by hours of
the PWP appearing to be symptom-free. </span><span style="font-family: "arial"; font-size: 14.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial bold"; font-size: 14.0pt;">* ”On’s” and “Off’s”
ie.</span><span style="font-family: "arial"; font-size: 14.0pt;"> “</span><b style="mso-bidi-font-weight: normal;"><u><span style="color: windowtext; font-size: 14.0pt;">Going Off” or
“Freezing</span></u></b><span style="color: windowtext; font-size: 14.0pt;">:”
These are phrases used by most later-stage PWP’s to describe the phenomenon
whereby we are suddenly switched “off” and lose the ability to walk, to step
forward, to grasp a pencil, to speak clearly, to reach for a book, etc. I
describe it in my poems as being “tagged” by a “Freeze-Tag Wizard.” This
presents differently for each person, but is most likely related to a drop in
the amount of levadopa in our blood levels. It is the most anguishing of
experiences for most PWP’s, because when it occurs, we are rendered completely
helpless, often after feeling fully functional. Although we know we will
eventually return to fully functioning again, we simply never know when the
next “tagging” will occur. “Rescue” interventions like Parcopa, (dissolvable
Sinemet), or injections of Apomorphine can turn some of us “on” again. Always
discuss these solutions with your neurologist.<span style="mso-text-raise: -1.0pt; position: relative; top: 1.0pt;"><o:p></o:p></span></span></div>
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<span style="color: windowtext; font-size: 14.0pt;">Sometimes, but
not always, taking a large step forward can “unfreeze” us for the moment, as
can singing, or stepping over an imaginary line, or an ankle-high laser line of
light provided by certain canes designed for PWP’s.</span><span style="font-family: "arial"; font-size: 14.0pt;"><o:p></o:p></span></div>
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<b style="mso-bidi-font-weight: normal;"><u><span style="color: windowtext; font-size: 14.0pt;">* “Parkinson’s Mask”</span></u></b><span style="color: windowtext; font-size: 14.0pt;">: A commonly used metaphorical
reference to the facial appearance of a later-stage PWP whose facial muscles
have stiffened into what can be mistaken for a depressed or indifferent,
impassive expression. This condition is always indeed “a mask,” because we
PWP’s have the same emotions as anyone else. Exercises of the facial muscles
can help this condition.</span><span style="font-family: "arial"; font-size: 14.0pt;"><o:p></o:p></span></div>
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<b style="mso-bidi-font-weight: normal;"><u><span style="color: windowtext; font-size: 14.0pt;">* Drowsiness or Insomnia, and
Physical and Mental Fatigue</span></u></b><span style="color: windowtext; font-size: 14.0pt;">: All of these can be caused by PD <u>and</u> by side effects
from its medications, and can cause serious falls, or driving accidents.
Tackling these problems can occur through use of prescription medications.
Provigil is commonly used to keep us awake by day. For help with sleeping,
Remeron works for others. Note: <u>A movement disorder physician is best
equipped to address and prescribe sleep medications</u>. Sleep habits can also
be improved through exercise, yoga, meditation, cognitive therapy, awareness of
reduced caffeine in the afternoons and evenings, and avoiding nighttime
computer addiction.</span><span style="font-family: "arial"; font-size: 14.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial"; font-size: 14.0pt;">*</span><u><span style="font-family: "arial bold"; font-size: 14.0pt;">
</span></u><b style="mso-bidi-font-weight: normal;"><u><span style="color: windowtext; font-size: 14.0pt;">Unpredictable balance inconsistencies: </span></u></b><span style="color: windowtext; font-size: 14.0pt;">These can result in frequent falls
and potential hospitalizations. PWP’s can be moving easily across a room, and
moments later, be tipping or lurching forward, grabbing at walls, and
misperceived (which often happens) as being inebriated. This can occur when
medications are wearing off, or, conversely, just as they are kicking in. The
practice of Asian martial arts such as “Tai Chi”, “Qi Gong”, as well as dance
therapy, can be quite effective in addressing these PD issues. Falling can also
be caused by sudden drops in blood pressure; a symptom common to PWP’s.</span><span style="font-family: "arial"; font-size: 14.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial"; font-size: 14.0pt;">·*</span><b style="mso-bidi-font-weight: normal;"><u><span style="color: windowtext; font-size: 14.0pt;">Bradykinesia: </span></u></b><span style="color: windowtext; font-size: 14.0pt;">a stubborn slowness of our limbs,
which attacks without warning, often minutes after we appear to be symptom-free,
but usually means we’re low on our levodopa med’s. It can manifest on one side
of the body initially, with one set of fingers slowed down and thus beginning
to make mistakes in typing, or the affected side not being able to sustain a
drumbeat, or, as is most common, one arm stops swinging as one walks across a
room. <o:p></o:p></span></div>
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<span style="font-family: "arial"; font-size: 14.0pt;">*</span><u><span style="font-family: "arial bold"; font-size: 14.0pt;">
Medication or Dosage Failures": <span style="mso-spacerun: yes;"> </span>Stress, fatigue, or extreme heat or cold, or </span></u><span style="color: windowtext; font-size: 14.0pt;">Infections of any kind can disable a
PWP’s levadopa absorption. Something as benign as a sinus infection, a GI
infection (especially H-Pylori), or a urinary tract infection, can turn a
fairly high-functioning PWP into a severely disabled one, who can feel barely
able to walk for hours each day. Diagnosis and treatment of infections is
essential for both PWP’s and their practitioners to stay on top of. For some
PWP's, their digestive systems don't consistently absorb levadopa, and Tasmar,
which works through helping levadopa to be absorbed through the brain, can help
enormously with this, but requires blood tests every two weeks for six months,
due to very small risk of liver failure. </span><span style="font-family: "arial"; font-size: 14.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial"; font-size: 14.0pt;">* </span><b style="mso-bidi-font-weight: normal;"><u><span style="color: windowtext; font-size: 14.0pt;">Speech irregularities</span></u></b><span style="color: windowtext; font-size: 14.0pt;">: PD causes many of us to have speech
that is too soft, too rapid, or slurring, which we are not always aware of, and
which can be irritating to our loved ones. Speech training, or joining a chorus
or singing programs can be effective in strengthening our vocal cord muscles, and
in slowing our speech down, and increasing our volume. Dry mouth from
medication side-effects can also make speech difficult, and a daily use of a
toothpaste, "Biotene," can be quite effectve in reducing this
problem.</span><span style="font-family: "arial"; font-size: 14.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial"; font-size: 14.0pt;">* </span><b style="mso-bidi-font-weight: normal;"><u><span style="color: windowtext; font-size: 14.0pt;">Dyskinesias</span></u></b><span style="color: windowtext; font-size: 14.0pt;">: Involuntary jerking, twisting, or
writhing movements in many of us, which can be extremely disabling and
uncomfortable, causing secondary problems, like pulled muscles. Clinical trials
are underway to seek treatments for levodopa-caused dyskinesias. Namenda, a
newer pharmaceutical quite effectively used for Alzheimers, seems to have a
value for some of us in mitigating our exasperating dyskinesias, as is
Amantadine. Extensive acupuncture treatments to the ears was discovered
recently to be helpful, by a doctor in Germany. It can be adapted and modified
by other acupuncturists in the US, and this writer sees an acupuncturist in
Brooklyn who has done just that, greatly helping me with my own dyskinesias.</span><span style="font-family: "arial"; font-size: 14.0pt;"><o:p></o:p></span></div>
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<b style="mso-bidi-font-weight: normal;"><u><span style="color: windowtext; font-size: 14.0pt;">*Cognitive Disruptions and Executive
Dysfunctions) </span></u></b><u><span style="color: windowtext; font-size: 14.0pt;">which
are </span></u><span style="color: windowtext; font-size: 14.0pt;">caused by PD can
precede the onset of motor symptoms by as much as ten years. Sometimes unfortunately
mistaken for Alzheimers, these symptoms can often include depression, anxiety,
and difficulty with the brain’s <b style="mso-bidi-font-weight: normal;">“Executive
Functions.”</b> <span style="mso-spacerun: yes;"> </span><b style="mso-bidi-font-weight: normal;">These executive function problems can mimic ADD <u>(Attention Deficit
Disorder)</u> symptoms, causing great difficulty with short term memory
retrieval, multi-tasking, transitioning from one activity to another, problems
with concentration and attention, organizational skills, prioritizing, and
decision-making</b>. PWP’s can also develop symptoms that look like OCD
(Obsessive-Compulsive Disorder), and some dopamine agonists have been
implicated in causing addictive and compulsive behavior like gambling and
sexual addiction. For many, the obsessive behaviors can manifest as computer
addiction. Compensatory strategies used by adult with ADD can be used to
address these problems.<o:p></o:p></span></div>
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<span style="color: windowtext; font-size: 14.0pt;">All of these
can be a source of great frustration for many PWP’s who previously did not have
problems in these areas before symptom onset. Many have had to retire from
careers requiring these skills, or have had to significantly adjust and modify
their careers<o:p></o:p></span></div>
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<b style="mso-bidi-font-weight: normal;"><span style="color: windowtext; font-size: 14.0pt;">These symptoms do not limit the intelligence or
creative abilities of those with PD.</span></b><b style="mso-bidi-font-weight: normal;"><span style="font-family: "arial"; font-size: 14.0pt;"><o:p></o:p></span></b></div>
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<b style="mso-bidi-font-weight: normal;"><u><span style="color: windowtext; font-size: 14.0pt;">*Anxiety and Depression can</span></u></b><span style="color: windowtext; font-size: 14.0pt;"> be effectively treated by
antidepressants, and anti-anxiety medications. Your movement-disorder
neurologist should discuss use of these medications with you and any other
physician prescribing these kinds of med’s.<o:p></o:p></span></div>
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<span style="color: windowtext; font-size: 14.0pt;">These symptoms
can also often be lessened through use of the expressive arts, including such
mediums as dance, playing a musical instrument, writing poetry or prose,
painting, singing, sculpture or photography. Recent brain research using fMRI
brain scans suggest that improvisational creative activity stimulates parts of
the brain involved with creativity, and some of us speculate that this might
generate temporary rushes of a neurotransmitter that might, in effect, serve
the purpose of self-medicating artists with PD. <o:p></o:p></span></div>
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<span style="color: windowtext; font-size: 14.0pt;">There is an
unexplained phenomenon of extraordinary bursts of creativity from those with
Parkinson’s, resulting, at the 2006 World Parkinson’s Congress, in a discussion
by Oliver Sacks on the topic, and a <b style="mso-bidi-font-weight: normal;">huge
gallery of work by PWP’s, which can be accessed at the PDF.org website under
the sidebar, “Living with Parkinson’s.”</b></span><span style="font-family: "arial bold italic"; font-size: 14.0pt;"><o:p></o:p></span></div>
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<span style="color: windowtext; font-size: 14.0pt;">For further
information, please contact <u>Leonore Gordon, LCSW</u>, at <a href="mailto:leonore1234@aol.com"><span style="color: windowtext;">leonore1234@aol.com</span></a>,
or by phone at (718) 783 1986, or (347) 489 9123.</span><span style="font-family: "arial"; font-size: 14.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "times new roman"; font-size: 14.0pt;">My blog is at <a href="http://www.alphapdny.blogspot.com/"><span style="color: windowtext;">http://www.alphapdny.blogspot.com</span></a><o:p></o:p></span></div>
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Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.com0tag:blogger.com,1999:blog-3506753531284902981.post-25890629528275812322013-09-26T18:13:00.001-04:002016-05-12T21:13:09.199-04:00"Through Our Eyes" WPC Poster Content<div align="center" class="MsoNormal" style="text-align: center;">
<b><span style="background-color: white; color: maroon; font-family: "verdana"; font-size: 18pt;">PERSONAL RESPONSES TO SURVEY BY RESPONDENTS:<o:p></o:p></span></b></div>
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<b><span style="background-color: white; color: maroon; font-family: "verdana"; font-size: 18pt;">Primary Question: What have you gained from learning from Persons with Parkinson’s?<o:p></o:p></span></b></div>
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<b><span style="background-color: white; color: maroon; font-family: "verdana"; font-size: 14pt;">Andy Hendrickson: former graduate student helper from one of earliest LIU PD-Exercise program:</span></b><b><span style="color: black; font-family: "helvetica"; font-size: 14pt;"><o:p></o:p></span></b></div>
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<span style="color: black; font-family: "helvetica"; font-size: 13.5pt;"> "I feel so blessed that I was given the opportunity to work with and learn from such amazing people and to get a glimpse into what it is like to live with Parkinson's disease. "</span><span style="color: black; font-family: "helvetica"; font-size: 10pt;"><o:p></o:p></span></div>
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<span style="color: black; font-family: "helvetica"; font-size: 10pt;"> </span><span style="color: black; font-family: "helvetica"; font-size: 13.5pt;">We are currently living in Cheyenne Wyoming where I manage the Cheyenne Regional Fitness Center. Our facility is a commercial gym for the community, a corporate fitness center for hospital employees and a medical fitness center. I was told after I being hired that one of the things that stood out to the hiring committees was how passionately I spoke about my experience at LIU with the Brooklyn Parkinson's group."</span><span style="color: black; font-family: "helvetica"; font-size: 10pt;"><o:p></o:p></span></div>
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<b><u><span style="color: #943634; font-family: "cambria"; font-size: 14pt;">David Spierer, Exercise Physiology Professor at LIU, Brooklyn, NY:<o:p></o:p></span></u></b></div>
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<span style="color: black; font-family: "arial"; font-size: 14pt;">Re: visits by PWP's (Persons with Parkinson’s) to my Exercise Physiology graduate classes:<o:p></o:p></span></div>
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<span style="color: black; font-family: "arial"; font-size: 14pt;">Teaching theory only gets students so far. However, students taught from the perspective of the clinical patient will more readily acquire the clinical "pearls of wisdom" they so eagerly seek. Over the past 2 years, a teaching session to my curriculum including a presentation and personal discussion with a group of patients with Parkinsons; this allowed my students to see the application of what they were currently learning by putting a human face on a disease that is otherwise abstract. This experience engaged them in ways which will only benefit them when they become clinicians. <o:p></o:p></span></div>
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<span style="color: black; font-family: "arial"; font-size: 14pt;">As a bonus, several of my students are seriously thinking about working with specific clinical populations instead of with athletic populations or just the general public.<o:p></o:p></span></div>
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<b><u><span style="color: #943634; font-size: 14pt;"> From Yasser </span></u></b><b><u><span style="color: maroon; font-size: 14pt;">Salem,</span></u></b><span style="color: maroon; font-family: "arial"; font-size: 14pt;"> PT, PhD, NCS, PCS; Associate Professor<o:p></o:p></span></div>
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<span style="color: maroon; font-family: "arial"; font-size: 14pt;">Physical Therapy; University of North Texas Health Science Center<o:p></o:p></span></div>
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<b><span style="color: #943634; font-family: "cambria"; font-size: 14pt;">From two of my former LIU students who attended class with PWP speakers visiting:<o:p></o:p></span></b></div>
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<b><u><span style="color: #943634; font-family: "cambria"; font-size: 14pt;">:<o:p></o:p></span></u></b></div>
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<li class="MsoNormal" style="background-color: white;"><span style="font-family: "arial"; font-size: 13.5pt;">I have greater understanding of the disease.</span><span style="font-family: "arial"; font-size: 10pt;"><o:p></o:p></span></li>
<li class="MsoNormal" style="background-color: white;"><span style="font-family: "arial"; font-size: 13.5pt;">I learned a lot about the disease and it was really interesting. It gave me a whole new perspective on PT and our roles in this disease. </span><span style="font-family: "arial"; font-size: 10pt;"><o:p></o:p></span></li>
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<b><u><span style="color: #943634; font-family: "cambria"; font-size: 14pt;">FURTHER (ANONYMOUS) SURVEY RESPONSES</span></u></b><b><span style="color: #e36c0a; font-family: "cambria"; font-size: 14pt;">:</span></b><br />
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;"> “PwP’s are the best resource of info for us/HP on symptoms and treatment. They are the vital team members within Multidisciplinary team.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Learning to look more in depth at the whole person.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“As a PWP on the stage with Neurologists about clinical trials, my MDS talked about a clinical trial, and then I added details about that same trial from the patient's perspective. People came u p to and thanked me.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I've learned so much from my participants. One of the main reasons, I feel we started the Fitness For PD was to blend a sense of security, comfort & camaraderie along with being on machines, doing corrective exercises, working on balance or performing dynamic movement during the cardio portion of the workout. I so enjoy socializing aspect! “<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I have learned to recognize the limitations people with Parkinson's face in their everyday lives. I also learned how a group setting can encourage and motivate individuals to strive to be well.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Training for Dance for Parkinson's Disease focuses on the disability and how to help the PWP forget that and enjoy the dance. Contact with PWP was impressive because of the extraordinary strength of character participants exhibit - courage, creativity and great good will in general.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“More understanding of the personal, day-to-day feelings associated with the disease and how that impacts on social interactions small and large.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“…Mainly how tricky the medication can be. Patients refer to them as "on or off" days.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“…Sense of body image; sense of human capacity and limitation; sense of humor in the face of a very serious illness.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I was most affected by their gratitude for the opportunity to dance.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I learned that PD can present with a wide range of symptoms, not just the tremors and freezing that most people are aware of. I also learned that exercise in this population is for the brain as well as the muscles.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial";"> “Wish I had known more years ago, while my Dad was still alive. It was learning that he had PD (after he died!) that moved me to learn more & participate in Dance for PD trainings.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial";">“Although I do not live with a PWP, to know the basic tasks that become a struggle, I cannot help but to feel compassion.”<o:p></o:p></span></div>
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<b><u><span style="background-color: #e6ecc0; color: #333333; font-family: "arial";"> </span></u></b><b><u><span style="background-color: cyan; color: #333333; font-family: "arial";">If you work or study in the health-care or education world and engage with people with Parkinson's, do you wish your professor or trainer had educated you about this short-hand PD language, re. "On's" and "Off's"?</span></u></b><b><u><span style="font-family: "times";"><o:p></o:p></span></u></b></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Work in field, know ons, and offs very well”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I did learn about the lingo while in training with Dance for PD.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“We all have to have knowledge of the common PD language, speak the same language and reinforce the strategies through all our roles, across all of our roles to become trans-disciplinary teams - therefore we and PwP could benefit from this specialty amongst HPs.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I speak to university students in training to be Physical therapists, exercise physiologists, nurses, doctors - and I go over these terms with them.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“We learned from others with Parkinson's about putting a foot in front of the person with PD to jump start them into walking forward. We would love to be educated with more of these helpful things to do.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“It is important for neurologist and also PWP to educate their Health Professionals what to see, how to see and how to ask questions and what to ask PWP”<o:p></o:p></span></div>
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<b><u><span style="background-color: cyan; color: #333333; font-family: "arial";">If you are in the health care field, or an educator, did learning about the diminishing executive functions (short-term memory, concentration, task completion, etc) of many PWP'S prove useful in your subsequent relationship with, or work with this population?</span></u></b><b><u><span style="font-family: "times";"><o:p></o:p></span></u></b></div>
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<span style="color: #333333; font-family: "arial";">“It helps me design classes and dance sequences that will work for, and be useful to, my participants with Parkinson's.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial";">“Knowing this plays an integral part in assessing, setting up a rehabilitation program and interventions; assisting young PwP to maintain the jobs, find hobbies and maintain any other roles in their life. Assist the family members to better understand PwP and maintain the family, relationship.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial";">“Being more educated about it enables me to be more understanding and empathetic.”<o:p></o:p></span></div>
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<span style="color: #888888; font-family: "arial";">“</span><span style="color: #333333; font-family: "arial";">Learning the symptoms and effects as well as terminology helps me to formulate and conduct the class to their needs and abilities.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial";">“I was overly helpful at times, for instance in helping a PWP find something that was missing. She let me know that she didn't need help, she just needed more time to go through her belongings. The "help" was a distraction.”<o:p></o:p></span></div>
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<span style="color: #888888; font-family: "arial";">“I </span><span style="color: #333333; font-family: "arial";">saw how executive functions Impact all social and interpersonal behaviors, and limits self-care.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial";">“I was used to training athletes where everything is quick explosive movements. One of the greatest things that has become useful by training people with Parkinson's is patience.”<o:p></o:p></span></div>
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<span style="color: #888888; font-family: "arial";">“</span><span style="color: #333333; font-family: "arial";">As a dance teacher, I had to find different ways to choreograph and "chunk up" movement for my students.”<o:p></o:p></span></div>
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<b><u><span style="background-color: cyan; color: #333333; font-family: "arial";">If you have Parkinson's yourself, once you learned about these</span></u></b><b><u><span style="background-color: cyan; color: #333333; font-family: "arial"; font-size: 14pt;"> </span></u></b><b><u><span style="background-color: cyan; color: #333333; font-family: "arial";">specific "Executive Function" cognitive changes, did it give you the desire to address these issues proactively in your own life?</span></u></b><b><u><span style="font-family: "times";"><o:p></o:p></span></u></b></div>
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<span style="background-color: white; color: #333333; font-family: "arial";">“It gave me a reason for some of my behavior.”<o:p></o:p></span></div>
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<b><u><span style="background-color: #e6ecc0; color: #333333; font-family: "arial";"> </span></u></b><b><u><span style="background-color: cyan; color: #333333; font-family: "arial";">If your significant other or family member is a PWP, did learning about the particulars of executive function challenges for her/him from a PWP make you feel more compassion towards your PWP?</span></u></b><b><u><span style="font-family: "times";"><o:p></o:p></span></u></b></div>
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<span style="color: #333333; font-family: "arial";">“It helped me to be less frustrated and to recognize that these things were not being done intentionally.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I always feel compassion for my PWP, and also insist on getting it back for myself as care partner. That relationship is very important.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“More understanding, more empathy and patience as well as shared coping skills.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Wish I had known more years ago, while my Dad was still alive. It was learning that he had PD (after he died!) that moved me to learn more & participate in Dance for PD trainings.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Although I do not live with a PWP, just hearing some of the people talk about the shape they were in before Parkinson's, and knowing the basic tasks that become a struggle, I cannot help but to feel compassion.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“The (non PWP) professional social worker was a downer. She spoke of the progression of the disease as inevitable. My husband stood up and berated her. Then (the PWP) spoke of many cues she uses to help the problem of distraction. This was great!”<o:p></o:p></span></div>
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<b><u><span style="background-color: cyan; color: #333333; font-family: "arial";">If training as a health-care professional or educator, did you change your actual specialization in your work after this experience?</span></u></b><b><u><span style="background-color: cyan; font-family: "times";"><o:p></o:p></span></u></b></div>
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<b><u><span style="background-color: cyan; color: #333333; font-family: "arial"; font-size: 12pt;">If yes, what specialty did you choose?</span></u></b><b><u><span style="color: #333333; font-family: "arial"; font-size: 12pt;"><o:p></o:p></span></u></b></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I gained better understanding of PwP needs, beliefs, and dreams. I realized how much Health Professionals do not know what they do not know. Treating PwP is a unique approach which is completely different to a generic neurological approach as majority of HPs use.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I wanted to mainly train athletes, but after working with the Brooklyn Parkinson's group, I now want to focus on training special populations.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Teaching and directing a movement class based on the Dance for PD model.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I had worked as a creative director at a healthcare company, but after the training and work with PWPs, I felt I wanted to spend my time working with those who lived the condition - rather than making websites or brochures about them.”<o:p></o:p></span></div>
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<b><u><span style="background-color: cyan; color: #333333; font-family: "arial"; font-size: 14pt;">OF THOSE WHO ATTENDED ANY SORT OF PRESENTATION GIVEN BY PERSONS WITH PARKINSON’S, SUCH AS A LECTURE, PROFESSIONAL TRAINING CLASS, OR Q&A SESSION WHERE PEOPLE WITH PD VISITED TO DISCUSS LIVING WITH PARKINSON'S,</span></u></b><b><u><span style="background-color: cyan; font-family: "times"; font-size: 14pt;"> </span></u></b><b><u><span style="background-color: cyan; color: #333333; font-family: "arial"; font-size: 14pt;">WHEN ASKED ANONYMOUSLY,<o:p></o:p></span></u></b></div>
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<b><u><span style="background-color: cyan; color: #8064a2; font-family: "arial"; font-size: 14pt;">“DID YOU FIND THE INFORMATION PRESENTED TO BE USEFUL TO YOU?” </span></u></b><b><u><span style="background-color: cyan; color: #8064a2; font-family: "times"; font-size: 14pt;"><o:p></o:p></span></u></b></div>
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<b><u><span style="background-color: cyan; color: #8064a2; font-family: "arial"; font-size: 14pt;"> 83% RESPONDED WITH A RESOUNDING, “YES.”</span></u></b><b><u><span style="background-color: #e6ecc0; color: #8064a2; font-family: "arial"; font-size: 14pt;"><o:p></o:p></span></u></b></div>
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<b><u><span style="background-color: cyan; color: #333333; font-family: "arial";">ADDITIONAL SURVEY QUESTIONS</span></u></b><b><u><span style="background-color: #e6ecc0; color: #333333; font-family: "arial";"><o:p></o:p></span></u></b></div>
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<b><u><span style="background-color: cyan; color: #333333; font-family: "arial";">Were you ever given reading materials written by people with Parkinson's at events you attended?</span></u></b><b><u><span style="font-family: "times";"><o:p></o:p></span></u></b></div>
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<span style="background-color: white; color: #333333; font-family: "arial";">“This material contains the most real facts that help us HP to understand the PD”</span><span style="font-family: "times";"><o:p></o:p></span></div>
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<b><u><span style="background-color: cyan; color: #333333; font-family: "arial";">Would you recommend that training institutions working with this PWP'S incorporate these types of Q&A sessions into their training process?</span></u></b><b><u><span style="font-family: "times";"><o:p></o:p></span></u></b></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I'm surprised at how little most people know about Parkinson's. They seem intimidated by the idea of working with people with Parkinson's, which is not helpful, necessary, or realistic.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I think a good presentation should cover many bases, but these do not stand out as requiring special attention.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Problem of education of physicians goes way beyond this particular issue. How to educate family physicians who see the bulk of persons with PD—who are not connected to training institutions is the big issue to tackle together with neurologists in private practice who see many persons with PD—and also have no access to institutional training.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Yes. We do include this in our training that we provide and the feedback is great.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Yes. Hell yes.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Sure - the more informed we are, the better things will be.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“There is</span><span style="color: #333333; font-family: "arial";"> </span><span style="color: #333333; font-family: "arial"; font-size: 12pt;">nothing like learning from the source!”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“While a lot of information can be received through text books and research, it is extremely helpful to get first-hand knowledge from people living with PD or working with this population.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Although it is impossible to know how it feels to have PD, I have gotten my best understanding from PWP. For example, one person told me they feel like they are on a roller coaster trying to eat when they have dyskinesias.”<o:p></o:p></span></div>
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<b><u><span style="background-color: cyan; color: #333333; font-family: "arial"; font-size: 14pt;">If you have the time, please use the space below to share any other personal thoughts re. the unique value you experienced as a result of learning from PWP'S, which may help enhance the poster presentation for its viewers.</span></u></b><b><u><span style="font-family: "times"; font-size: 14pt;"><o:p></o:p></span></u></b></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“PWPs should be incorporated into ALL types of training for any professional who might care for us -- including professors who teach such students!”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Learning about the executive function deficiency and the cognitive problems has come just when I'm experiencing these things and it is so so helpful to know about it!”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“By joining the Brooklyn Parkinson's Group I have benefitted from the community in a myriad of ways. My understanding of PD was enhanced my need for denial diminished and my self esteem and compassion increased. I now help others to come to grips with having PD whereas in my early post diagnosis I wanted to hide. I am grateful”.<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I have been a guest speaker at my Speech Pathologist's graduate program at Hunter College. Students in the health profession benefit from hearing directly from people with parkinson's disease.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Significance of social support, empowerment, resilience, hope, and continuing movement in maintaining reasonable physical/cognitive functions and quality of life living with PD.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Please encourage people to do physical exercise to counteract Executive Function. Many people see exercise as a way of keeping trim but they don't know how it affects brain function. My PWP (husband) is an intellectual and needs incentives. Thanks so much for your work on this.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Inspiration”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Life Learning experience empowers us/HP and our PwP to live normal life with PD.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I was 11-yrs. old when my Mom was diagnosed with PD and then I married a man who was also diagnosed. So it's been part of my life for as long as I can remember. I've learned a lot over the years, but mostly that it takes a strong relationship of communication and compassion going in both directions if a couple is to manage this disease successfully.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I've learned from PWP every day for the last 3 decades. Inspiring.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“PD is so varied in its progression, and its symptoms that it is very difficult to generalize about cognitive decline.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Whenever there is a meeting of any kind, and employees of national PD orgs are there to "represent people with Parkinson's" there should ALWAYS be a person with PD (PWP) at their side to make sure the true "patient voice" is heard. A PD patient advocate is a PWP who advocates. A staff member of NPF or APDA or PDF who sits on a committee about PD or clinical trials or whatever IS NOT a patient advocate. And again, when selected for committees members of orgs should have a PWP by their side. It is only in this way that the true "patient voice" will be heard.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I attended an annual scientific meeting a few months ago. And as I watched some scientific presentations about this clinical trial, I began to speak out. They mentioned a machine used to measure objectively Parkinson's movement - I spoke up and said I'd been in the clinical trial for that equipment at the NIH. When a new "arm" for the study was mentioned - I told the group that I was a member of that population, and again gave my personal experience. Later several scientists came up to me to thank me for sharing that information.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I am truly blessed to be able to work in a unique environment that allows PWP's to workout in a safe and supervised manner with fitness professionals. It's more than a great workout. It helps mentally and emotionally. If we could somehow clone this program, that would be A dream come true!”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“When a PWP addresses a group the feeling is that the presenter has insights that the professional does not have.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Because Parkinson's expresses itself so differently and with such a wide range of symptoms and rates of progression, it is absolutely necessary for students in any medical field who will have contact with PWPs to be exposed to the various expressions of the condition, There is no "classic" case, no singular description that you can adequately absorb from a book. This variability makes exposure to numerous patients necessary to understand the disease in its many forms.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“The greater the contact with the same PWP's in group meetings creates a closeness, acceptance and support that instructs people without Parkinson's on how better to give and receive. I think the great benefit of this social support must be always included in any assessment. There is a different dynamic in groups that meet weekly only for a class and have little contact otherwise. Additional involvement with the same people creates a closer connection and I think has a greater therapeutic effect.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Hearing from, and meeting with PWP helps put a human face on PWP and the issues they face. Humanizing PD helps caregivers (and Dance for PD teachers and other movement professionals) remember we are all people, some of us just have different needs. The more we understand, the more positive our interactions can be. This spills over into all my interactions, for instance, I also lead sessions for a group of people who have varying dementias. The more I understand, the better our joint experience.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Reminds the audience how vibrant and insightful PWP are about their disease, and reminds us all to enjoy life!”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I believe students going into any exercise field of rehabilitation should know more about programs like the Brooklyn Parkinson's group. The program flies under the radar and it takes place on a University campus with an excellent Exercise Science program. If the students knew about it and could work with the program more it would not only benefit the students tremendously but also the Parkinson's community.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“This population is the most pro-active group of people that I have ever had the privilege of knowing. They show all of the most noble qualities of the human spirit: determination, curiosity, humor and kindness.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I was excited about the teacher training for Dance for PD, but I didn't fully understand how important the class was until the Q&A after the demo class with DWPs (dancers with Parkinsons!). Hearing their thoughtful, articulate comments and suggestions reminded me how important it is to treat PWPs as the intelligent, independent people they are.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I came to this new work over the age of 60, when I thought I was settled in my career and my life. Through a series of events, I had to make very big changes in order to take on what I'm doing now. But they are nowhere near as large as what a PWP (or a person with Alzheimers, whom I also teach), is going through daily. I think I am both happier about the aging process because I have "beginner's mind" about what I do each day and also more empathic and emotionally involved in my career because of these novel experiences and learning so much from the PWPs I work with in my classes. I am also less afraid of disease and disability and better able to see the humanity in every situation.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Myriad of symptoms under the "umbrella" of PD.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I appreciated hearing the individual stories about being diagnosed with PD, handling the symptoms as they presented, and having to give up certain activities. There's an emotional aspect involved with PD, as with any other chronic illness, that cannot be taught or truly explained in a book or class lecture.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“One should not confuse the body movements and other symptoms of PWP with being sharp intelligent, creative, and capable people.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Our experience (PLWPs) is varied, and not easily summarized. The more we are heard from DIRECTLY, and LISTENED TO the more effectively can we be helped.”<o:p></o:p></span></div>
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<b><u><span style="font-size: 14pt;">Respondents to Survey Included Those In…:<o:p></o:p></span></u></b></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“research…”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Supervisory capacity during group activity sessions to ensure safety of all”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“…as part of a non profit organization”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Manager of Multidisciplinary team specialised in PD, researcher, clinician with my own caseload as important part of my role and lecturer”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Volunteer”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Nonprofit work”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Physical Therapist”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I am a Certified Personal Trainer working with BPG as their fitness trainer.”<o:p></o:p></span></div>
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<span style="color: #888888; font-family: "arial"; font-size: 12pt;"> “</span><span style="color: #333333; font-family: "arial"; font-size: 12pt;">strength and wellness coach”</span><span style="color: #888888; font-family: "arial"; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I am a movement/dance teacher for PWPs”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I am a volunteer for the Dance for Parkinson's Disease group.”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“I help weight train people with Parkinson's”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Dance for PD”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Dance for PD teacher”<o:p></o:p></span></div>
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<span style="color: #333333; font-family: "arial"; font-size: 12pt;">“Teach Dance for PD”<o:p></o:p></span></div>
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<b><u>MEMBERS OF A LONG ISLAND UNIVERSITY PD EXERCISE CLASS</u></b></div>
Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.com0tag:blogger.com,1999:blog-3506753531284902981.post-64485380699137961372013-09-25T20:38:00.000-04:002015-02-06T14:54:33.982-05:00Join us at the 2016 World Parkinsons Congress in Portrland, Oregon<a href="http://www.worldpdcongress.org/?page=RegistrationDetails">Register and join us at 2016 World Parkinsons Congress in Portland, Oregon:10/1-4</a><br />
http://www.worldpdcoalition.org/?page=RegistrationDetails<a href="http://www.worldpdcoalition.org/?page=RegistrationDetails">http://www.worldpdcoalition.org/?page=RegistrationDetails</a>Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.com0tag:blogger.com,1999:blog-3506753531284902981.post-5689223952956114302012-01-09T18:16:00.000-05:002013-09-26T18:16:49.962-04:00"Through Our Eyes": Persons with PD Information Service<div>
For too long, the national and local organizations representing the needs of the PD community, while providing us with vital services, have, with only a few exceptions, left the "PD Voice" and perspective out of the mix while designing and presenting publicly attended programs, forums and conferences about our needs. We need to insist on the motto of the disability advocacy community, "Nothing about us without us," and ask for our presence on panels at any public teaching event about PD, even if it is only two members of the advocacy comunity, and in the academic teaching classroms where health practitioners are learning about treating us. We strongly believe that we need to be invited to speak, even if only once, to bring the human element and presence of the actual person experiencing a disease, to every class of practitioners who are being trained to work with us: movement disorder physicians, clinical researchers, occupational therapists, physical therapists, nurse practitioners, physician's assistants, speech therapists, psychiatrists, physiatrists, chiropracters, and neurologists.</div>
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This has been already implemented by NPF's APTT program (Allied Professionals Team Training," whereby three-day teaching conferences are held across the country to train practitioners, always with several panels of persons with PD, and another of caregivers. There are forward-thinking doctors in several states who have begun to invite patients to speak to clinical research or medical students, but this is rare. We applaud them. One head of a Movement Disorder Center in New York City uses a series of one of his patient's poems about her Parkinson's to teach his movement disorder students about the disease, feeling, in his own words, that "the language of poetry is such more eloquent and poignant a teaching tool than a textbook." Indeed, at the PDF.org website, under "Living with Parkinson's" one can find a wealth of writing and art by PD folks living with the disease in a "PDCreativity Gallery." Any teaching physician can include this in required teaching materials.<br />
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The PWP Speakers’ Bureau has been designed with the goal of offering sensitivity and awareness training to health care professionals working with the Parkinson’s population, through a speakers’ panel comprised of diverse members of the health care professions who themselves live with the disease. We will attempt to help our listeners and their students to better understand the frustrating and extraordinarily mercurial motor and non-motor issues we face, the uniqueness of each patient’s presentation of this disease, and the lesser-known cognitive challenges we struggle with.<br />
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During our presentation, we will each, on the panel, present brief glimpses of the manifestations of PD through the unique windows of our daily lives, including a question and answer period. We will offer verbal and written suggestions about how to address issues specific to this disease through more efficient patient interviews, Parkinson’s-specific questionnaires to use during patient visits, and interventions that incorporate a deeper understanding of our frailties, while reinforcing our strengths. We will also distribute a packet of poems written by those with PD, about their disease. These poems are already being used to train health care practitioners in this field. In so doing, we hope to be able to offer a distilled, insider’s glimpse of issues pertinent to our illness that would not be accessible through written materials or textbooks.</div>
Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.com1tag:blogger.com,1999:blog-3506753531284902981.post-35215503609222387172012-01-09T16:38:00.001-05:002012-01-09T16:42:29.840-05:00Northwest Parkinson Foundation Newsletter Web-page: Excellent Info ResourceNWPF is an excellent newsletter out of Seattle with summaries of important events, articles and research relating to PD, but it is also a superb informational website for questions and concerns about managing your <br />
PD. Click on 'Home.<a href="http://nwpf.org/">nwpf.org</a> and explore 'Care and Support' section.<br />
Be sure to open link to 'Medical Alert Card'<br />
<a href="https://www.nwpf.org/CareAndSupport/MedicalAlertCard.aspx">https://www.nwpf.org/CareAndSupport/MedicalAlertCard.aspx</a><br />
<br />
and 'The Tip Jar' is a wonderful idea.<br />
(Excerpt): <br />
<em><strong>"Welcome to the Tip Jar. Over the many years of working within the Parkinson's community we have heard some wonderful tips and insights on living with Parkinson's day-to-day. On this page we have compiled some of those helpful hints. These user tips are for the patient, family member and caregiver, and are meant to help improve the quality of life for those touched by PD.</strong></em><br />
<em><strong>This is also an opportunity to share your successes and ideas to help others improve their day-to-day journey with PD. You can add to any of the ideas already posted or create a new one of your own.</strong></em><br />
<em><br />
<strong></strong></em><br />
<em><strong>We also ask that you forward this resource to anyone else you think it might benefit.</strong></em><br />
<em><strong>As always, if you have any questions please send us an email at info@nwpf.org or call us at 1-877-980-7500. We always look forward to hearing from you.</strong></em>Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.comtag:blogger.com,1999:blog-3506753531284902981.post-42239177963310982812012-01-09T14:57:00.002-05:002012-01-09T19:29:22.775-05:00Research and Articles-Possible Tap Water Link to Neurological Diseases<a href="http://www.miller-mccune.com/health/was-lou-gehrigs-als-caused-by-tap-water-38804/" title="http://www.miller-mccune.com/health/was-lou-gehrigs-als-caused-by-tap-water-38804/">Was Lou Gehrig's ALS Caused by Tap Water? - Miller-McCune</a> <br />
A reminder to buy and use water filters...Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.com0tag:blogger.com,1999:blog-3506753531284902981.post-24807958934949323162009-06-05T18:08:00.039-04:002012-01-25T17:52:56.296-05:00New York City: Support Services of Excellence for PD Folks<span style="font-size: 20px;"></span><strong><span style="font-size: 180%;"></span></strong><br />
<u><strong><span style="font-size: 180%;">In NY City & Long Island</span></strong><strong><span style="font-size: 180%;"></span></strong></u><br />
<span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;"><span class="Apple-style-span" style="font-size: x-large;"><br /></span></span></span><br />
<span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;"><span class="Apple-style-span" style="font-size: x-large;">Recommended Movement Disorder Practices </span></span></span><br />
<strong><em>Note: These practices are recommended by Parkinson's patients because of in-depth attention paid to each patient and family through extensive time spent between primary doctor and patient during appointments every three months, a positive relationship established between doctor and patient whereby each patient experiences authentic concern and interest in that patient's needs from movement disorder specialist, and through integrated team approach. Close relationship with doctor facilitates in-depth understanding of each patient's unique lifestyle and needs, and results in individually tailored treatment approach. These practices also include doctors' attention to, and referrals to related programs providing PD-specific exercise, dance and singing programs.</em></strong><br />
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<span class="Apple-style-span" style="font-weight: bold;"><span style="font-size: large;">NYU Medical Center Movement Disorder Program and NYU/JCC/PD Wellness Center</span>: 142 E 32. St. (212) 263 4838 http://parkinson.med.nyu.edu/wellness-center</span><br />
<span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-weight: normal;">PD patients and families are assessed and treated, if needed, by a team of allied treatment-professionals from multiple disciplines (Neurology, PT, OT, Speech and Swallowing therapists, Social Work services, with Nurse Practitioner on primary treatment team). Appointments are thorough and comprehensive, with interest in the full person and his and her family. Chief PD Movement Disorder Neurologist; <span class="Apple-style-span" style="font-weight: bold;">Dr. Alessandro Dirocco</span>; D<span class="Apple-style-span" style="font-weight: bold;">r. Rebecca Gilbert</span> </span></span><br />
<span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-weight: normal;">Patient recommendation: "Takes at least 45 minutes with each patient, gets to know family, cares about uniqueness of each patient and provides individualized treatment."</span></span><br />
See also below, under PD Support Services, "<span class="Apple-style-span" style="font-weight: bold;">NYU/JCC PD Wellness Center"</span><br />
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<span style="font-size: large;"><strong><u>Movement Disorder Practice In Brooklyn: </u></strong></span><br />
<span style="font-size: large;"><em>Downstate Movement Disorder Practice: Dr. Ivan Bodis-Wallner, MD Department of Neurology - Movement Disorders Patricia Kavanagh, MD;</em></span><br />
<span style="font-size: large;"><em> SUNY DOWNSTATE MEDICAL CENTER 450 Clarkson Avenue Brooklyn, NY 11203; phone: (718) 270-2051</em></span> <br />
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<span class="Apple-style-span" style="font-size: large;"><b><i><u>Additional Primary Care Physicians:</u></i></b></span><br />
<span class="Apple-style-span" style="font-style: italic;"><span style="font-size: large;"><span class="Apple-style-span" style="font-weight: bold;">Brooklyn, NY: Primary Care Physician:</span> Dr. Elie Fteha</span></span><span class="Apple-style-span" style="font-style: italic;">; 718 638 2551. Offices in North and South Brooklyn. Patient recommendation: "Skillful, thorough, takes time and is concerned and respectful of patients, and is willing to learn from them."</span></div>
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<span class="Apple-style-span" style="font-style: italic; font-weight: bold;"><span class="Apple-style-span" style="font-weight: normal;"><span style="font-size: large;"><strong>On Long Island</strong>:</span> </span></span><br />
<span class="Apple-style-span" style="font-style: italic; font-weight: bold;"><span class="Apple-style-span">Dr. Tej-Preet Singh</span><span class="Apple-style-span" style="font-weight: normal;">;</span><span class="Apple-style-span" style="font-style: normal; font-weight: normal;"> </span><span class="Apple-style-span" style="font-weight: normal;">Dr. Teresa Farrugia (</span><span class="Apple-style-span" style="font-style: normal; font-weight: normal;">who works out of the same office, is equally good.) Dr. Tej-Preet Singh’s office is at 20 Hicksville Rd. (Rt. 107) in Massapequa, right where Rt. 107 intersects with Merrick Avenue. Quote from patient: "He is very personable, and caring." (<span class="Apple-style-span" style="font-style: italic;">Long Island)</span></span></span></div>
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<span class="Apple-style-span" style="font-style: italic;"><span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-size: x-large;"><u>Patient Support Services & Programs</u></span></span></span><br />
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<span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;"><span class="Apple-style-span" style="font-style: normal; font-weight: normal;"><span style="font-size: 0px;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-weight: bold;"><a href="http://www.jccmanhattan.org/category.aspx?catid=2452" title="http://www.jccmanhattan.org/category.aspx?catid=">The JCC in Manhattan</a></span></span></span><span style="font-size: 130%;"> </span><span style="font-size: 0px;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-weight: bold;">NYU/JCC PD Wellness Center</span>:</span></span><span style="font-size: 130%;"> </span><span style="font-size: 0px;"><span class="Apple-style-span" style="font-size: medium;">Amsterdam & 76th St. W</span></span>eekly classes for persons with PD, including yoga, Tai Chi, Nia dance, Pilates, etc., with teachers trained to work with people with PD. Program holds special Sunday education and audience participation events every few months, with a focus, for example, on dance, music, singing, or alternative treatments for PD. Contact Amy Lemens at 212-263 7282, or 646 505 5744.</span></span></span><br />
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<span class="Apple-style-span" style="font-weight: bold;"><span style="font-size: 0px;"><span class="Apple-style-span" style="font-size: large;">Beth Israel University Hospita</span></span><span style="font-size: 0px;"><span class="Apple-style-span" style="font-size: large;">l </span></span></span></div>
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<span class="Apple-style-span" style="font-weight: bold;"><span style="font-size: 0px;"><span class="Apple-style-span" style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; font-size: small;"><em>Attention! New Support group for early-onset PD focusing on strategies to live healthily and participate in political strategies towards finding a cure!!!! Second Thursday monthly, 6-8 pm. (see below)</em></span></span></span></div>
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<span class="Apple-style-span" style="font-weight: bold;">Monthly PD Support Groups (Last Thursday of each month, 6-8; 5th floor conference room, and Weekly Tai Chi and Qi Gong Classes for PD</span></div>
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<strong><span class="Apple-style-span" style="font-weight: normal;">(Manhattan</span> <span class="Apple-style-span" style="font-weight: normal;">at 10 Union Square East, between 14th and 16th Street)</span></strong> <br />
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<strong><span style="font-size: 0px;"><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span" style="font-style: italic;"><span class="Apple-style-span" style="font-weight: bold;"></span></span><span class="Apple-style-span" style="font-style: italic;"><span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span"><span class="Apple-style-span" style="font-size: medium;">Qi Gong and Yoga classes for PD</span></span></span></span><span class="Apple-style-span"><span class="Apple-style-span" style="font-size: medium;">; </span></span></span><span class="Apple-style-span" style="font-style: italic;"><span class="Apple-style-span"><span class="Apple-style-span" style="font-size: medium;">Early-Onset Monthly Support groups;</span></span></span><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span"><span class="Apple-style-span" style="font-size: medium;"> (except for August)</span></span></span></span></strong></div>
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<strong><span style="font-size: 0px;"><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span"><span class="Apple-style-span" style="font-size: medium;"><strong> </strong><span style="font-size: small;">New support group for those diagnosed before 50, geared towards finding proactive approaches to keeping active and healthy will be held on second Thursday of every month, 4-6 pm Additional support groups held on second Thursdays</span><span style="font-size: small;">. 2-4 pm. and last Thursday, 6-8 pm. Location: 2nd Floor Neurology Conference Room; 5K. </span></span></span></span></span></strong><br />
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<span class="Apple-style-span"><span class="Apple-style-span">Contact Sheree Loftus at (212) 844 8482 </span></span><span class="Apple-style-span" style="color: #555555; font-family: Helvetica, Arial, sans-serif; font-size: 12px;"><span dojoattachpoint="fullFromNode"><span class="address" userinputform="loftussl@optonline.net"> loftussl@optonline.net</span></span></span><span class="Apple-style-span" style="color: #555555; font-family: Helvetica, Arial, sans-serif; font-size: 12px;"> </span><br />
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<span class="Apple-style-span"><span style="font-size: large;"><strong>BROOKLYN PARKINSON'S GROUP: <a href="http://www.brooklynparkinsongroup.com/">http://www.brooklynparkinsongroup.com/</a></strong></span></span></div>
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<span class="Apple-style-span" style="font-size: medium;">Superb organization with support groups, and dance, singing and exercise classes for persons with PD. Most classes permit participation of family members or caregivers. Contact BPD founder Olie Westheimer at </span><a href="mailto:oliewestheimer@brooklynparkinsongroup.org"><span class="Apple-style-span" style="font-size: medium;">oliewestheimer@brooklynparkinsongroup.org</span></a><span class="Apple-style-span" style="font-size: medium;"><br />
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<strong><span class="Apple-style-span" style="font-size: medium;">Activities</span></strong>1. <span class="Apple-style-span" style="font-weight: bold;">"Dance for PD"</span> classes (Wednesdays at 2) are sponsored by BPG in collaboration with Mark Morris Dance Group (MMDG), a world renowned modern dance company located at Lafayette Ave., one block from Brooklyn Academy of Music. New classes begin in September, '09, and end 12/16/09, resuming in 2010, after New Year's Day.<br />
Listen to an NPR radio story about class:<a href="http://www.npr.org/templates/story/story.php?storyId=98230200&sc=emaf"> </a>P<a href="http://www.npr.org/templates/story/story.php?storyId=98230200&sc=emaf">arkinson's Patients Find Grace In Dance : NPR</a><br />
<span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; color: blue; font-family: Tahoma; font-size: x-small; font-style: italic; font-weight: bold;"><span style="color: blue; font-family: Arial; font-size: x-small;"><u><b>D<a href="http://www.pbs.org/newshour/bb/health/july-dec10/parkinson_12-09.html" rel="nofollow" style="color: blue; cursor: pointer; text-decoration: underline;" target="_blank">ance Helps Parkinson's Patients Harness Therapeutic Power of Movement | PBS NewsHour | Dec. 9, 2010 | PBS</a><u> </u></b><u><br />
</u></u></span></span><span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; color: blue; font-family: Tahoma; font-size: x-small; font-style: italic; font-weight: bold;"><u><u><span style="color: blue; font-family: Tahoma; font-size: x-small;"><b><i><a href="http://www.brooklynparkinsongroup.org/" rel="nofollow" style="color: blue; cursor: pointer; text-decoration: underline;" target="_blank">Brooklyn Parkinson Group : Dancing, Singing, Movement, Friends</a> </i></b></span></u></u></span><u><u><span style="color: blue; font-family: Tahoma; font-size: x-small;"><b><i></i></b></span></u></u><u><u><span style="color: blue; font-family: Tahoma; font-size: x-small;"><b><i></i></b></span></u></u><br />
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<span class="Apple-style-span" style="-webkit-text-decorations-in-effect: underline; color: blue; font-family: Tahoma; font-size: x-small; font-style: italic; font-weight: bold;"><u><u><span style="color: blue; font-family: Tahoma; font-size: x-small;"><b><i><br />
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2. "<span class="Apple-style-span" style="font-weight: bold;">Movement Lab</span>" (Fridays at 2, also at MMD building) is an exercise class led by Pam Quinn, in which specific movement problems of persons with Parkinson's Disease are addressed.<br />
<span class="Apple-style-span" style="color: #444444; font-family: Georgia, 'Bitstream Charter', serif; font-size: 16px; line-height: 24px;">Pamela Quinn won the 2010 World Congress video award in Glasgow for her short documentary “Welcome to Our World.” You may recognize the feelings she describes with movement! There is a link to it on her website</span><span class="Apple-style-span" style="color: #444444; font-family: Georgia, 'Bitstream Charter', serif; font-size: 16px; line-height: 24px;"> </span><span class="Apple-style-span" style="color: #444444; font-family: Georgia, 'Bitstream Charter', serif; font-size: 16px; line-height: 24px;"><a href="http://pamelaquinn.net/videos" style="background-clip: initial; background-color: transparent; background-origin: initial; border-bottom-width: 0px; border-left-width: 0px; border-right-width: 0px; border-top-width: 0px; color: #0066cc; margin: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;">http://pamelaquinn.net/videos</a></span><br />
ttp://pamelaquinn.net/videos<br />
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3. In "<span class="Apple-style-span" style="font-weight: bold;">Sing for PD</span>" classes, (Tuesdays at 2 at MMDG building) participants sing standards and Broadway tunes to live piano accompaniment. ( Class resumes in September/09.)<br />
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4. <strong>Twice-weekly exercise classes with aerobic workout</strong> by Janice Mason (see post below), and supervised use of weight machines. Tues. and Thursday am 10:30-11:30. Located at nearby L.I.U. on Ashland Pl., just past Dekalb Ave. (clinical trial; attendance not open; requires evaluation, doctor's letter, and application) Contact Rebecca.States@<a href="mailto:liu.edudavid.spierer@liu.edu">liu.edu or </a><a href="mailto:david.spierer@liu.edu">david.spierer@liu.edu</a> for appointment. (718 488 1542)</div>
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<strong><span style="font-size: x-large;">Recommended Allied-Health Care Practitioners</span></strong><span class="Apple-style-span" style="font-weight: bold;"><br />
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<strong><span style="font-size: large;">Acupuncture</span></strong><span style="font-size: 130%;"><span style="font-size: 100%;">Brooklyn: John Iozzio, 718 788 5003<br />
Dr.Iozzo uses chiropractic and acupuncture to help PD symptoms</span><strong><span style="font-size: 130%;">.</span></strong></span><strong><span class="Apple-style-span"><span class="Apple-style-span" style="font-size: medium;"></span></span></strong><br />
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<strong><span class="Apple-style-span"><span class="Apple-style-span" style="font-size: large;">Physical Therapy</span></span></strong><span class="Apple-style-span" style="font-size: 18px;"><br />
</span><strong></strong>Herb Karpatkin; Neurological physical therapy; work (646) 487-2495<br />
<span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-style: italic;"><span class="Apple-style-span" style="font-style: normal; font-weight: normal;">work fax (646) 487-2497 e-mail: <a href="mailto:herbkarppt@gmail.com">herbkarppt@gmail.com</a></span></span></span><br />
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<strong><span class="Apple-style-span" style="font-size: large;">Fitness Trainers</span><span class="Apple-style-span" style="font-weight: normal;"></span></strong></div>
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<span class="Apple-style-span" style="font-weight: bold;">Janice Mason: BODY CORE FITNESS SYSTEMS; </span>, CPT, CES, N.A.S.M., Reiki III, B.S.-HPER 917.568.7910 or 718.246.9216 (Brooklyn) <a href="mailto:Janlohoma@mac.com" title="mailto:Janlohoma@mac.com"><span class="Apple-style-span" style="color: black; text-decoration: none;"></span></a><a href="mailto:Janlohoma@mac.com" title="mailto:Janlohoma@mac.com">mailto:Janlohoma@mac.com</a><br />
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<span class="Apple-style-span" style="font-weight: bold;">Pam Quinn;</span> Yoga; Gentle Movement; Private lessons, in-home (Manhattan) 646. 591. 4321<span class="Apple-style-span" style="font-size: 48px; font-weight: bold;"><span class="Apple-style-span" style="font-size: 18px;"></span></span><br />
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<span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-size: 130%;">Trager Practitioners</span><span class="Apple-style-span"> <span class="Apple-tab-span" style="white-space: pre;"></span></span></span><br />
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<strong>Martha Partridge;</strong> Location: just below Union Sqare; Work #: 212 358-1083.</div>
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Specializes in Parkinson's treatment, among other specializations. Excellent recommendations by PD patients.</div>
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<span class="Apple-style-span"><span style="font-size: large;"><strong><span class="Apple-style-span">Links to PD Organizations, Information Sources, Conferences, and Learning About Clinical Trials ( Involve Yourself in Finding a Cure</span></strong><span class="Apple-style-span">)</span></span></span></div>
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<span class="Apple-style-span" style="font-weight: bold;">PD Clinical Trials</span><br />
<a href="http://www.pdtrials.org/" title="http://www.pdtrials.org/">PDTrials - Parkinson's Disease Clinical Trials</a><br />
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<strong>National Parkinson Foundation</strong> <strong>Early Onset-PD Conference</strong>-wonderful annual event. It's a wonderful way for both of you to meet people and attend even separate workshops for caregivers. Every year it's in different city. NPF, who sponsors it, is a great organization, and trains people in related health fields to work with PD folks. (NYU/JCC PD partnership is partially funded by NPF.)<br />
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<strong>Web Forums Teaching About PD</strong><br />
<a href="http://pdf.org/en/edu_events_texas" title="http://pdf.org/en/edu_events_texas">Taking Charge of Your Parkinson's - Parkinson's Disease Foundation (PDF)</a><br />
This is a really interesting webcast from PDF, as is, on "Mind, Mood and Non-Motor Symptoms of Parkinson's" Both are worth listening to....<br />
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APDA and NPF Joint Young Onset Parkinson Conference APDA and NPF Joint Young Onset Parkinson Conference 10/24/09. Watch on Web: <a href="http://event.netbriefings.com/event/pdf/Archives/nonmotor/" title="http://event.netbriefings.com/event/pdf/Archives/nonmotor/">http://event.netbriefings.com/event/pdf/Archives/nonmotor/</a><br />
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<a href="http://www.apdaparkinson.org/userND/index.asp"> American Parkinson Disease Association ::Home</a><br />
Welcome to www.youngparkinsons.org<br />
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Whether you have recently been diagnosed with Parkinson's disease, or have been living with the disease for many years, you are likely to want and need a different kind of education and support than someone who has been diagnosed later in life. APDA's National Young Onset Center and Web site offer you: <br />
►Programs & services that focus on education, networking & wellness. <br />
►Personalized and confidential one-to-one service. <br />
►Help managing young onset PD as effectively as possible so you are able to live well and stay strong! <br />
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<span class="Apple-style-span" style="color: #333333; font-family: Helvetica, sans-serif; font-size: 14px; line-height: 14px;">Creativity Gallery on website of </span><span class="Apple-style-span" style="color: #333333; font-family: Helvetica, sans-serif; font-size: 14px; line-height: 14px;"><a href="http://www.pdf.org/en/index" id="logo" style="color: #006633; margin-left: 16px; text-decoration: none; text-transform: none;" title="Parkinson's Disease Foundation"><img alt="Parkinson's Disease Foundation logo" src="http://www.pdf.org/img/logo.gif" style="border-bottom-width: 0px; border-left-width: 0px; border-right-width: 0px; border-top-width: 0px; vertical-align: middle;" /></a></span>http://www.pdf.org/en/creativity<br />
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<strong><span style="font-size: x-large;">PD Newsletters <span class="Apple-style-span">(available by web, e-mail digest, and snail mail)</span></span></strong><br />
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Superb e-newsletter (and snail-mail version available, too) about international and national news on Parkinson's out of Seattle:<br />
<a href="http://www.nwpf.org/" title="http://www.nwpf.org/">Northwest Parkinson's Foundation (NWPF) Improving the Quality of Life</a><br />
<span style="font-size: 85%;">Check out "Tip Jar" link (below) with great ideas from others with PD offering "tips" to meet daily challenges and improve quality of life, and </span><span style="font-size: 85%;">"Resource Links" (link below) </span><br />
<a href="http://www.blogger.com/" style="font-size: 85%;">Northwest Parkinson's Foundation (NWPF) Improving the Quality of Life -The Tip Jar</a><br />
<span style="font-size: 85%;">and </span><span style="font-size: 85%;">Northwest Parkinson's Foundation (NWPF) Improving the Quality of Life - Resources</span><br />
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<span style="font-size: 130%;"><strong>Internet Support Group Websites, and Books Published by PWP's (Persons with PD) also referred to as "Parkies"</strong>:</span>(you'll learn the most from fellow PD folks)<br />
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<a href="http://www.pdpipeline.org/" title="http://www.pdpipeline.org/"><strong>Parkinson Pipeline Project</strong></a><strong> a website/list-serve run by Parkies<br />
as is </strong><a href="http://neurotalk.psychcentral.com/forum34.html" title="http://neurotalk.psychcentral.com/forum34.html"><strong>Parkinson's Disease - NeuroTalk Communities</strong></a><strong><br />
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National Parkinson Foundation's Discussion Corner Forums (</strong><a href="http://www.parkinson.org/NETCOMMUNITY/Page.aspx?&pid=467" title="http://www.parkinson.org/NETCOMMUNITY/Page.aspx?&pid="><strong>http://www.parkinson.org/NETCOMMUNITY/Page.aspx?&pid=467</strong></a><strong>)</strong><a href="http://nccam.nih.gov/" title="http://nccam.nih.gov/"><strong>National Center for Complementary and Alternative Medicine [NCCAM] - nccam.nih.gov Home Page</strong></a> Useful web site, and highly recommended by Cyndy Gilberston, a social worker with 22 years of PD who ran her own conference in '07 in NY, on PD and complementary medicine.<br />
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<span style="font-size: 130%;"><span style="font-size: 100%;"><span style="font-size: small;"><strong>Excellent Web site: CLOGNITION,</strong> about our cognitive problems caused by PD, at </span></span><a href="http://www.clognition.org/community.htm" title="http://www.clognition.org/community.htm"><span style="font-size: small;">http://www.clognition.org/community.htm</span></a><span style="font-size: 100%;"><span style="font-size: small;">. It's a must read-a really educational, (and funny) site, created by "Parkie" and Michael J. Fox Board member, Carey Christenson .</span><br />
<strong><span style="font-size: small;">CHE: Collaborative on Health and the Environment : Parkinson's Working Group </span></strong></span><a href="http://www.healthandenvironment.org/working_groups/parkinsons" title="http://www.healthandenvironment.org/working_groups/parkinsons"><strong><span style="font-size: small;">http://www.healthandenvironment.org/working_groups/parkinsons</span></strong></a><span style="font-size: 100%;"><strong><br />
</strong><span style="font-size: small;">Incredibly important group to join, (and subscribe to e-mail alerts)<br />
CHE PD Working group's leader, <span class="Apple-style-span" style="font-weight: bold;">Jackie Christensen,</span> is from Minneapolis, and a dynamic woman in her 40's with PD.</span></span></span><br />
<span style="font-size: large;"><strong>Recommended Books</strong></span><br />
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<span style="font-size: 130%;"><span style="font-size: 100%;"><span style="font-size: small;">Jackie Christensen (see above) wrote an essential book for the newly diagnosed:</span></span><a dq="amazon+jackie+hunt+christensen&printsec=" ei="OysLSp75HI66M9Gn_dsL&sa=" href="http://books.google.com/books?id=VcTRNklA-0sC&dq=amazon+jackie+hunt+christensen&printsec=frontcover&source=bl&ots=zoRjjiL2MR&sig=CEQt-jYUrcR8NDqvDJNZ7t0VBPI&hl=en&ei=OysLSp75HI66M9Gn_dsL&sa=X&oi=book_result&ct=result&resnum=1" oi="book_result&ct=" resnum="1" sig="CEQt-jYUrcR8NDqvDJNZ7t0VBPI&hl=" source="bl&ots=" title="http://books.google.com/books?id="><strong><span style="font-size: 100%;"></span></strong></a></span><br />
<span style="font-size: 130%;"><a dq="amazon+jackie+hunt+christensen&printsec=" ei="OysLSp75HI66M9Gn_dsL&sa=" href="http://books.google.com/books?id=VcTRNklA-0sC&dq=amazon+jackie+hunt+christensen&printsec=frontcover&source=bl&ots=zoRjjiL2MR&sig=CEQt-jYUrcR8NDqvDJNZ7t0VBPI&hl=en&ei=OysLSp75HI66M9Gn_dsL&sa=X&oi=book_result&ct=result&resnum=1" oi="book_result&ct=" resnum="1" sig="CEQt-jYUrcR8NDqvDJNZ7t0VBPI&hl=" source="bl&ots=" title="http://books.google.com/books?id="><strong><span style="font-size: large;">Parkinson's Disease: An Essential ... - Google Book Search</span></strong></a><strong><span style="font-size: large;"> : </span></strong><strong><span style="font-size: 100%;"><span style="font-size: small;"><span style="font-size: large;"><em>The First Year---Parkinson's Disease: An Essential Guide for the Newly Diagnosed:</em> Jackie Hunt Christensen</span><span class="Apple-style-span" style="font-weight: normal;">Jackie also just released, in 2009,: </span></span></span></strong></span><br />
<span style="font-size: 130%;"><strong><span style="font-size: 0px;"><span style="font-size: large;"><span class="Apple-style-span">"</span><em><span class="Apple-style-span"><span class="Apple-style-span">Life With a Battery-Operated Brain - A Patient's Guide to Deep Brain Stimulation Surgery for Parkinson's Disease</span>"</span></em></span><span class="Apple-style-span" style="font-size: small;"> (Paperback) </span></span></strong></span><span style="font-size: 130%;"><a href="http://www.amazon.com/Life-Battery-Operated-Brain-Stimulation-" ie="UTF8&s=" qid="1242246157&sr=" title="http://www.amazon.com/Life-Battery-Operated-Brain-Stimulation-Parkinsons/dp/1934938262/ref="><strong><span style="font-size: 0px;"><span class="Apple-style-span" style="font-size: small;">http://www.amazon.com/Life-Battery-Operated-Brain-Stimulation-</span></span></strong></a><strong><br />
</strong></span><span style="font-size: 130%;"><span style="font-size: 100%;"><strong><span style="font-size: medium;"></span></strong></span></span><span style="font-size: 130%;"><span style="font-size: 100%;"><strong><span style="font-size: small;"><span style="font-size: large;">"<em><span class="Apple-style-span">Living Well, Running Hard: Lessons Learned from Living with Parkinson's Disease</span></em><span class="Apple-style-span">" S</span></span><span class="Apple-style-span" style="font-weight: normal;"><span class="Apple-style-span">uperb book</span></span><span style="font-size: 100%;"> written by John Ball, who, at 62, with 35 years of PD under his belt, just ran his 21st marathon. John, with wife, Edna, runs the charity for LA Marathon, <span class="Apple-style-span" style="font-weight: bold;">TeamParkinson's</span>. </span></span><a href="http://www.amazon.com/Living-Living%20Well-Running-Hard-Parkinsons" ie="UTF8&s=" qid="1215471636&sr=" title="http://www.amazon.com/Living-Well-Running-Hard-Parkinsons/dp/1420827898/ref="><span style="font-size: small;">http://www.amazon.com/Living-Living Well-Running-Hard-Parkinsons</span></a><span style="font-size: 100%;"><br />
<span style="font-size: small;"></span></span></strong></span></span><br />
<span style="font-size: 130%;"><span style="font-size: 100%;"><strong><span style="font-size: 100%;"><span style="font-size: small;">Amazon.com: 100 Questions </span></span><span style="font-size: small;">p; Answers About Parkinson Disease (100 Questions & Answers about . . .): </span></strong></span><a href="http://www.amazon.com/Questions-Answers-About-Parkinson-Disease/dp/0763704334/ref=sr_1_1?ie=UTF8&s=books&qid=1215472241&sr=1-1" ie="UTF8&s=" qid="1215472241&sr=" title="http://www.amazon.com/Questions-Answers-About-Parkinson-Disease/dp/0763704334/ref="><span style="font-size: 100%;"><strong>http://www.amazon.com/Questions-Answers-About-Parkinson-Disease/dp/0763704334/ref=sr_1_1?ie=UTF8&s=books&qid=1215472241&sr=1-1</strong></span></a><strong><span style="font-size: 100%;">Abraham Lieberman</span></strong></span><br />
<span style="font-size: 130%;"><strong><span style="font-size: 100%;"></span></strong></span></div>
<div>
<br /></div>
<div>
<strong><span style="font-size: large;">The Parkinson's Disease Treatment Book: Partnering With Your Doctor; T. Eric Ahlskog; Oxford U Press; </span></strong><a href="http://www.us.oup.com/us/catalog/general/subject/Medicine/Neurology/?view=usa&ci=9780195171938&view=usa"><span style="font-size: large;">Oxford University Press: The Parkinson's Disease Treatment Book: J. Eric Ahlskog</span></a></div>
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<span style="font-size: 130%;"><span style="font-size: 100%;"><span style="font-size: x-large;"><strong>Political Advocacy</strong></span></span><br />
<span style="font-size: 85%;"><span style="font-size: 100%;">Political advocacy work gets your dopamine flowing. There's a lot patients can do for PAN (see link below), such as writing letters to editors, sending out e-mail legislative alerts to everyone they know to contact their elected representative when an important vote is coming</span> up.</span><a href="http://www.parkinsonsaction.org/" title="http://www.parkinsonsaction.org/"><span style="font-size: 85%;">http://www.parkinsonsaction.org/</span></a><span style="font-size: 85%;"><br />
</span><strong><span style="font-size: x-large;">National organizations:</span></strong></span></div>
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<strong><a href="http://www.pdf.org/" title="http://www.pdf.org/">Parkinson's Disease Foundation (PDF) - Hope through Research, Education and Advocacy</a> PDF - Parkinson's Disease Foundation, Inc. Home</strong><br />
<strong>National Parkinson Foundation: NPF.org</strong><br />
<strong><br />
Michael J Fox Foundation: <a href="http://michaeljfox.org/" title="http://michaeljfox.org/">http://michaeljfox.org/</a><br />
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Mohammed Ali Foundation: <a href="http://www.maprc.com/home/default.aspx" title="http://www.maprc.com/home/default.aspx">http://www.maprc.com/home/default.aspx</a></strong><br />
<strong>Opportunity in NY to Fundraise for a Cure (and create your own fundraising website):</strong> <span style="font-size: 130%;"><strong><span style="font-size: small;"></span></strong></span><br />
<span style="font-size: 130%;"><strong><span style="font-size: small;">Parkinsons Unity Walk: annual Central Park fundraising walk; </span><a href="http://www.unitywalk.org/"><span style="font-size: small;">http://www.unitywalk.org/</span></a><span style="font-size: small;"><span style="font-size: 100%;"> </span></span></strong></span><span style="font-size: 130%;"><strong></strong></span><span style="font-size: 130%;"><strong><strong><span style="font-size: 130%;"></span></strong></strong></span><br />
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<span style="font-size: 130%;"><strong><strong><span style="font-size: 130%;">Art, Creativity and Parkinson's</span></strong></strong></span><br />
<span style="font-size: 130%;"><span style="font-size: 100%;">For artistic inspiration, </span><a href="http://pdf.org/en/creativity" title="http://pdf.org/en/creativity"><span style="font-size: 100%;">Creativity and Parkinson’s - Parkinson's Disease Foundation (PDF)</span></a><span style="font-size: 100%;"> , is a pretty amazing web site, culled from a huge juried exhibit/performances at gallery by artists, poets, musicians, sculptors, playwrights,etc (.all with PD), at 5-day 2006 World Parkinson's Congress in DC.<br />
Scroll through whole site as you find the time, and click on gallery to see incredible art, and read stories/bios. Many artists are from other countries.</span></span><span class="Apple-style-span" style="font-weight: bold;"><span class="Apple-style-span" style="font-size: large;">Assistive Devices (Useful Especially for PD Folks)</span></span><br />
<span style="font-size: 130%;"></span><span style="font-size: 100%;">(most are insurance and Medicare reimbursable if doctor's scrip sent to dealer before purchase)</span><br />
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<a href="http://www.thescooterstore.com/products/scooters.aspx">Electric Scooters, Power Scooter from The SCOOTER Store 3 Wheel and 4 Wheel Motorized Scooters</a><br />
"Go-Go Ultra-lite" model can have seat lifted off and fit in trunk of car. Rides easily through doors of restaurants and stores.<br />
(Purchase from Scooter Store or Pride Mobility to assure security of warranty)<br />
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<a href="http://www.activeforever.com/p-617-u-step-walker-for-parkinsons-disease.aspx?CMPID=SZ">U-Step Walker *FREE SHIPPING* for Parkinsons Disease from ActiveForever.com</a>-: (designer's mother had PD). Beauty of this is that walker only rolls when hand-levers are pressed; safer when you're "off" and lurching forward.<br />
Sturdy, with comfortable seat, and folds for car trunks.<br />
Shwinn's Recumbent Exercise bike is easy to ride, and offers many levels of workout. <br />
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</div>Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.com0tag:blogger.com,1999:blog-3506753531284902981.post-53834334084780807412009-06-03T08:09:00.009-04:002016-05-12T21:19:07.634-04:00"Through Our Eyes": NY Parkinson's Speaker's Bureau; Presenting "PD's Lesser-Known Symptoms"<div align="center">
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<strong><u><span style="font-size: large;">Through Our Eyes: Understanding Life With PD's Lesser-Known Symptoms</span></u></strong></div>
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The New York Parkinson's Speakers’ Bureau has been designed with the goal of offering sensitivity and awareness training to health care professionals working with the Parkinson’s population, through making available a speakers’ panel comprised of diverse members of people actually living with PD who are either members of the health care professions themselves, and/or experienced patient advocates or public speakers. Nothing is more valuable than hearing about living with a disease from "the horses' mouth." Guest speakers will attempt to help our audience to better understand the frustrating and extraordinarily mercurial issues they face (both motor and non-motor symptoms); the uniqueness of each patient’s presentation of this disease; and the lesser-known cognitive challenges we struggle with.</div>
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During our presentation, we will each, on the panel, present brief glimpses of the manifestations of PD through the unique windows of our daily lives, including a question and answer period. We will offer verbal and written suggestions about how to address issues specific to this disease through more efficient patient interviews, Parkinson’s-specific questionnaires to use during patient visits, and interventions that incorporate a deeper understanding of our frailties, while reinforcing our strengths. We will also distribute a packet of poems written by those with PD, about their disease. These poems are already being used to train health care practitioners in this field. In so doing, we hope to be able to offer a distilled, insider’s glimpse of issues pertinent to our illness that would not be accessible through written materials or textbooks.</div>
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<h2>
<strong>Lesser-Known Symptoms, (and Lexicon), of Persons with Parkinson's</strong></h2>
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Most health-care providers who do not specialize in movement disorders are aware of the hand tremors and the slow, shuffling gait typical of the more advanced stages of PD, usually the most familiar characterizations of PWP’s (Persons with Parkinson’s.) Many, however, seem to be far less familiar with the wide array of other symptoms and issues common to us. These symptoms need to be recognized in order to more effectively treat those of us with PD. Additionally, a short-hand lexicon is often used within the PD population; it is one which needs translation in order to avoid confusion.<br />
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The phrase, <i><b>"I'm going 'off''"</b></i> (ie. "My medication is wearing off and I'm about to be barely able to move" right now) can be easily misconstrued by a health-care provider to mean, (as one PT student reported), that the speaker may be "about to act crazy." Likewise, <b>"<i>I'm frozen</i>"</b> (ie. "I can't move at all“) can be equally misinterpreted to mean, "Close the windows" or "Turn off the A/C." The following list roughly outlines some, (but not all) of the lesser-known symptoms, issues, and lexicon of PWP‘s, and can be more extensively and personally fleshed out by panel members during a speaking engagement.<br />
Note: Treatment can be tailored to be sensitive to these specific problems; for instance, if an<br />
HCP is assisting PWP'S using weight machines or exercises involving repetition, keeping count of the repetitions for the PWP can compensate for the short-term memory losses, and the difficulties in staying focused, both Executive Functions often lost as PD arrives.<br />
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<b>All of the symptoms listed below can appear intermittently throughout each day, vary widely with each person, and can be both preceded and followed by hours of the PWP appearing to be symptom-free. </b><br />
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<li><strong>Turning “Off” or “Freezing:”</strong> These are phrases used by most later-stage PWP’s to describe the phenomenon whereby we are suddenly switched “off” and lose the ability to walk, to step forward, to grasp a pencil, to speak clearly, to reach for a book, etc. One PWP poet describes it as being “tagged” by a “Freeze-Tag Wizard.” This presents differently for each person, but is most likely related to a drop in the amount of levadopa in our blood levels. It is the most anguishing of experiences for most PWP’s; when it occurs, we are rendered completely helpless, often after feeling fully functional. Although we know we will eventually return to fully functioning again, we simply never know when the next “tagging” will occur. “Rescue” interventions like Parcopa, (dissolvable Sinemet), or injections of Apomorphine can turn some of us “on” again. Sometimes, but not always, taking a large step forward can “unfreeze” us for the moment, as can singing, or stepping over an imaginary line, or an ankle-high laser line of light provided by certain canes designed for PWP’s.</li>
</ul>
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<li><strong>Cognitive Disruptions, or a Diminishment of</strong> <b>Executive Functions,</b> can precede the onset of motor symptoms by as much as ten years. These symptoms often include depression, anxiety, and difficulty with the brain’s “executive functions.” All of these can be a source of great frustration for many PWP’s who previously did not have problems in these areas before symptom onset. Many have had to retire from careers requiring these skills, or have had to significantly adjust and modify their careers. </li>
<li><i><b>These executive function problems can mimic ADD symptoms, causing great difficulty with short term memory retrieval, multi-tasking, transitioning from one activity to another, problems with concentration and attention, organizational skills, prioritizing, and decision-making.</b></i> PWP’s can also develop symptoms that look like OCD (Obsessive-Compulsive Disorder), and some dopamine agonists have been implicated in causing addictive and compulsive behavior like gambling and sexual addiction. For many, it manifests as computer addiction. For depression and anxiety issues, many have been helped by beginning the use of SSRI's (Lexapro, Celexa, etc.) or other anti-depressants, after a consultation with a physician knowledgable about PD. </li>
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<li><strong>“Parkinson’s Mask:” </strong> A commonly used metaphorical reference to the facial appearance of a later-stage PWP whose facial muscles have stiffened into what can be mistaken for a depressed or indifferent, impassive expression. This condition is always indeed “a mask,” because PWP’s have the same emotions as anyone else. Exercises of the facial muscles can help this condition</li>
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<li><strong>Drowsiness or Insomnia, and Physical and Mental Fatigue:</strong> All of these can be caused by PD and by side effects from its medications, and can cause serious falls, or driving accidents. Tackling these problems can occur through use of prescription medications. Provigil is commonly used to keep us awake by day. For help with sleeping, Remeron works for others. Note: A movement disorder physician is best equipped to address and prescribe sleep medications. Sleep habits can also be improved through yoga, meditation, cognitive therapy, awareness of reduced caffeine in the afternoons and evenings, and avoiding nighttime computer addiction.</li>
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<li><strong>Unpredictable balance inconsistencies</strong>: These can result in frequent falls and potential hospitalizations. PWP’s can be moving easily across a room, and moments later, be tipping or lurching forward, grabbing at walls, all of which can often be misperceived as being inebriated. This can occur when medications are wearing off, or, conversely, just as they are kicking in. The practice of Asian martial arts such as “Tai Chi”, “Qi Gong”, as well as dance therapy, can be quite effective in addressing these PD issues. Falling can also be caused by the sudden drops in blood pressure common to PWP’s.</li>
</ul>
Use of a <b>U-Step </b>walker can prove useful to those with severe balance problems (U-Step.com), it only rolls forward when the hand-levers are pressed, thus averting falls potentially caused by leaning on a traditional walker with no brakes. This walker was designed for PWP's in mind.<br />
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<li><strong>Bradykinesia</strong>: a stubborn slowness of our limbs, which attacks without warning, often minutes after we appear to be symptom-free.</li>
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<li><strong>Medication or Dosage Failures </strong>Infections of any kind can disable medication absorption. Something as benign as a sinus infection, a GI infection (especially H-Pylori), or a urinary tract infection, can turn a fairly high-functioning PWP into a severely disabled one, who can feel barely able to walk for hours each day. Diagnosis and treatment of infections is essential for both PWP’s and their practitioners to stay on top of. For some PWP's, their digestive systems don't consistently absorb levadopa, and Tasmar, which works through helping levadopa to be absorbed through the brain, can help enormously with this, but requires blood tests every two weeks for six months, due to very small risk of liver failure.</li>
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<li><strong>Speech Irregularities</strong>: PD causes many PWP’s to have speech that is too soft, too rapid, or slurring, which we are not always aware of, and which can be irritating to our loved ones. Speech and singing programs are available to strengthen our vocal cord muscles, slow speech down, and increase our volume. Consciously singing out loud while at home is a good tool.Dry mouth from medication side-effects can also make speech difficult, and a daily use of a toothpaste, "Biotene," can be quite effective in reducing this problem. Taking voice lessons with an LSVT coach (LSVTGLOBAL.COM) has been helpful in increasing voice volume. A group class is a less expensive way to utilise LSVT.</li>
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<li><strong>Dyskinesias</strong>: Involuntary jerking, twisting, or writhing movements in many of us who have been taking levadopa (synthetic dopamine) for more than five years. The causes are debated by researchers, some saying that dyskinesias are caused by an excess of levadopa, others implicate a drop in levadopa, and still others speculate a connection to the adrenal symptoms. Whatever the cause, they can be extremely disabling and uncomfortable. Clinical trials are underway to seek treatments for these dyskinesias. Namenda, a newer pharmaceutical quite effectively used for Alzheimers, seems to have a value for some of us in mitigating our exasperating dyskinesias. Extensive acupuncture treatments to the ears was discovered recently to be helpful, by a doctor in Germany. It can be adapted and modified by other acupuncturists in the US, and this writer sees someone in Brooklyn who has done just that, greatly helping me with my own dyskinesias.</li>
</ul>
<strong>Use of Expressive Arts to Treat PD</strong><br />
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While depression and anxiety can be treated by antidepressants, symptoms can also often be lessened through use of the expressive arts, including such mediums as dance, playing a musical instrument, poetry-writing, painting, singing, sculpture or photography. Recent brain research using fMRI brain scans suggest that improvisational creative activity stimulates parts of the brain involved with creativity, and some of us speculate that this might generate temporary rushes of a neurotransmitter that might, in effect, serve the purpose of self-medicating artists with PD. There is an unexplained phenomenon of extraordinary bursts of creativity from those with Parkinson’s, resulting, at the 2006 World Parkinson’s Congress, in a discussion by Oliver Sacks on the topic, and a huge gallery of work by PWP’s, which can be accessed at the <strong>PDF.org website under the sidebar, “Living with Parkinson’s.”<br />
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For further information, please contact Leonore Gordon, LCSW, at <a href="mailto:leonore1234@aol.com">leonore1234@aol.com</a>, or by phone at (718) 783 1986, or (347) 489 9123.Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.com1tag:blogger.com,1999:blog-3506753531284902981.post-15105873883307097002009-06-03T07:18:00.006-04:002009-09-18T11:04:47.022-04:00Jackie Christensen: Persons with Parkinsons Have a VoiceOn June 2nd, 2009, a published writer and advocate with Parkinson's, Jackie Christensen, was privileged to see a piece she'd written, entitled, "I Can Speak for Myself If You'll Let Me Do So," published in the Washinton Post.<br />
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Applause was heard in all corners of the country as news of the article was forwarded on computers through e-mail, and photocopies were passed out at support groups and exercise classes. Why? For too long, invaluable as their contributions to our PD community have been, the national PD organizations, along with teaching seminars about Parkinson's sponsored by teaching hospitals across the country, have made the mistake of excluding persons with the greatest expertise on living with a disease-the patients with Parkinsons-- from panels at conferences, web forums, and seminars teaching patients, practitioners and the public about this disease. There are innumerable PD Centers serving the PD community across the country without patients on their governing boards, or even in a formal advisory capacity. The Parkinsons Disease Foundation, to its credit, does have a "Patient Advisory Committee," but does not include any of those highly experienced advocates from that committee on presenter-panels in its otherwise invaluable educational forums.<br />
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In the Disability Advocacy community, there is a motto, "Nothing About Us Without Us." Many of us advocates with PD believe fervently in this premise. Members of the PD community include a population with untold numbers of people with "early-onset Parkinson's," many of whom were diagnosed in the prime of their lives and careers. Crucial to understand is the truth that many of us patients live for a long time with an illness that does not incapacitate our intelligence, creativity, or capacity to speak with wisdom and personal perspective about our illness to audiences of health care practitioners and fellow patients about our disease. And yet, time and time again, we attend seminars and teaching events where nary a person with PD is present on any dais, on the panels speaking with expertise on our disease; panels where our own observstions from the audience during Q&A sessions are no less astute or invaluable than those we have heard from the podium, and often complement the presentations.<br />
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There is a growing awareness among a few doctors and health practitioners across the country, that invitations to speakers with PD to address their teaching seminars have been met with enthusiasm, appreciation and sometimes tears, by students and researchers training to serve our community. Students at NYU's post-graduate clinical research program reported to their professors that when two persons with PD co-taught one of their classes, thereby humanizing their learning experience, it was, as many reported to the two professors, "the best class they had ever attended." They told one professor, (also the head of NYU's Movement Disorders Program), that they felt newly inspired to tackle research towards a cure for PD.<br />
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<br />
The "National Parkinsons Foundation" provides an excellent model for this approach. One of their programs travels around the country with "Allied Professionals Team Trainings"(APTT,) a training involving a 3-day conference with panels which always include at least two led by patients, and another with caregivers. We at Alpha propose that such a model can be replicated across the country in a fast-track mode through "Speakers Bureau" panels consisting of PWP's, (persons with Parkinson's.) These speakers can, in theory, be invite to speak to students training to be health practitioners serving our community just once per semester. This has already begun in NY and Los Angeles, as well as in Pennsylvania.<br />
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Similar goals can be accomplished through including writing by persons with Parkinsons as required reading in these same classes. This same doctor in New York City who heads the NYU Movement Disorder Center, uses one of his PD patient's poems about her disease to teach his training residents, stating that "no textbook can match the eloquence or poignancy of a patient's voice through poetry." Indeed, on the website of PDF.org, under "Living with Parkinson's," one can spend days roaming through the PD experience through the lens of artists with PD, where an entire juried gallery of art and music and writings exists to enhance the bibliography of any interested professor of Movement Disorders. <br />
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In summary, there is simply no reason NOT to invite the patient perspective to the table of any event concerning the PD population. The voice of those of us living with PD who are, through life experience or career, comfortable with public speaking, needs representation on any and all panels at conferences which address our treatment, as well as belonging inside of academic classrooms and teaching seminars where health care professionals are in training to treat us. Even if for only one visit per academic semester, the students interested in our treatment and care can only benefit from the opportunity to hear from us, and to ask us questions. It has been done successfully, and when it is done, it consistently serves to enhance and deepen the teaching and learning experience.<br />
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The Parkinson's "Through Our Voice" Speaker's Bureau has been designed with the goal of offering sensitivity and awareness training to health care professionals working with the Parkinson’s population, through a speakers’ panel comprised of diverse members of the Parkinson's community, some of them advocates and/or health care professionals, and all whom themselves live with the disease. We will attempt to help our listeners and their students to better understand the frustrating and extraordinarily mercurial motor and non-motor issues we face, the uniqueness of each patient’s presentation of this disease, and the lesser-known cognitive challenges we struggle with.<br />
<br />
During our presentation, we will each, on the panel, present brief glimpses of the manifestations of PD through the unique windows of our daily lives, including a question and answer period. We will offer verbal and written suggestions about how to address issues specific to this disease through more efficient patient interviews, Parkinson’s-specific questionnaires to use during patient visits, and interventions that incorporate a deeper understanding of our frailties, while reinforcing our strengths. We have available an evolving packet of poems written by those with PD, about their disease. Some of these poems are already being used to train health care practitioners in this field. In providing this written material, we hope to be able to offer a distilled, insider’s glimpse of issues pertinent to our illness that would not be accessible through written materials or textbooks.<br />
<br />
Attached to this site is a more detailed hand-out about the lesser-known symptoms of Parkinson's.<br />
<br />
For contact info on speaker's panels, please contact<br />
Leonore Gordon, LCSW<br />
<a href="mailto:leonore1234@aol.com">leonore1234@aol.com</a><br />
<br />
Web Site for Creativity Gallery: <a href="http://www.pdf.org/en/creativity">http://www.pdf.org/en/creativity</a>Leonore Gordon, LCSWhttp://www.blogger.com/profile/01230060824428319346noreply@blogger.com0