PDNY: New York City Resources and Information Service for People with Parkinsons Disease

"Through Our Eyes": Persons with PD Information Service

2012-01-09T18:16:00.000-05:00

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.

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.

The HCPWP 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.
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.

Northwest Parkinson Foundation Newsletter Web-page: Excellent Info Resource

2012-01-09T16:38:00.001-05:00

NWPF 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
PD. Click on 'Home.nwpf.org and explore 'Care and Support' section.
Be sure to open link to 'Medical Alert Card'
https://www.nwpf.org/CareAndSupport/MedicalAlertCard.aspx

and 'The Tip Jar' is a wonderful idea.
(Excerpt):
"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.
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.

We also ask that you forward this resource to anyone else you think it might benefit.
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.

Research and Articles-Possible Tap Water Link to Neurological Diseases

2012-01-09T14:57:00.002-05:00

Was Lou Gehrig's ALS Caused by Tap Water? - Miller-McCune
A reminder to buy and use water filters...

New York City: Support Services of Excellence for PD Folks

2009-06-05T18:08:00.039-04:00

In NY City & Long Island

Recommended Movement Disorder Practices
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.

NYU Medical Center Movement Disorder Program and NYU/JCC/PD Wellness Center: 142 E 32. St. (212) 263 4838 http://parkinson.med.nyu.edu/wellness-center
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; Dr. Alessandro Dirocco; Dr. Rebecca Gilbert
Patient recommendation: "Takes at least 45 minutes with each patient, gets to know family, cares about uniqueness of each patient and provides individualized treatment."
See also below, under PD Support Services, "NYU/JCC PD Wellness Center"

Movement Disorder Practice In Brooklyn:
Downstate Movement Disorder Practice: Dr. Ivan Bodis-Wallner, MD Department of Neurology - Movement Disorders Patricia Kavanagh, MD;
SUNY DOWNSTATE MEDICAL CENTER 450 Clarkson Avenue Brooklyn, NY 11203; phone: (718) 270-2051

Additional Primary Care Physicians:
Brooklyn, NY: Primary Care Physician: Dr. Elie Fteha; 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."

On Long Island:
Dr. Tej-Preet Singh; Dr. Teresa Farrugia (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." (Long Island)

Patient Support Services & Programs

The JCC in Manhattan NYU/JCC PD Wellness Center: Amsterdam & 76th St. Weekly 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.

Beth Israel University Hospital

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)

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

(Manhattan at 10 Union Square East, between 14th and 16th Street)

Qi Gong and Yoga classes for PD; Early-Onset Monthly Support groups; (except for August)

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. 2-4 pm. and last Thursday, 6-8 pm. Location: 2nd Floor Neurology Conference Room; 5K.

Contact Sheree Loftus at (212) 844 8482 loftussl@optonline.net

BROOKLYN PARKINSON'S GROUP: http://www.brooklynparkinsongroup.com/

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 oliewestheimer@brooklynparkinsongroup.org

Activities1. "Dance for PD" 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.
Listen to an NPR radio story about class: Parkinson's Patients Find Grace In Dance : NPR
Dance Helps Parkinson's Patients Harness Therapeutic Power of Movement | PBS NewsHour | Dec. 9, 2010 | PBS
Brooklyn Parkinson Group : Dancing, Singing, Movement, Friends

2. "Movement Lab" (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.
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 http://pamelaquinn.net/videos
ttp://pamelaquinn.net/videos

3. In "Sing for PD" classes, (Tuesdays at 2 at MMDG building) participants sing standards and Broadway tunes to live piano accompaniment. ( Class resumes in September/09.)

4. Twice-weekly exercise classes with aerobic workout 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@liu.edu or david.spierer@liu.edu for appointment. (718 488 1542)

Recommended Allied-Health Care Practitioners

AcupunctureBrooklyn: John Iozzio, 718 788 5003
Dr.Iozzo uses chiropractic and acupuncture to help PD symptoms.

Physical Therapy
Herb Karpatkin; Neurological physical therapy; work (646) 487-2495
work fax (646) 487-2497 e-mail: herbkarppt@gmail.com

Fitness Trainers

Janice Mason: BODY CORE FITNESS SYSTEMS; , CPT, CES, N.A.S.M., Reiki III, B.S.-HPER 917.568.7910 or 718.246.9216 (Brooklyn) mailto:Janlohoma@mac.com

Pam Quinn; Yoga; Gentle Movement; Private lessons, in-home (Manhattan) 646. 591. 4321

Trager Practitioners

Martha Partridge; Location: just below Union Sqare; Work #: 212 358-1083.

Specializes in Parkinson's treatment, among other specializations. Excellent recommendations by PD patients.

Links to PD Organizations, Information Sources, Conferences, and Learning About Clinical Trials ( Involve Yourself in Finding a Cure)

PD Clinical Trials
PDTrials - Parkinson's Disease Clinical Trials

National Parkinson Foundation Early Onset-PD Conference-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.)

Web Forums Teaching About PD
Taking Charge of Your Parkinson's - Parkinson's Disease Foundation (PDF)
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....

APDA and NPF Joint Young Onset Parkinson Conference APDA and NPF Joint Young Onset Parkinson Conference 10/24/09. Watch on Web: http://event.netbriefings.com/event/pdf/Archives/nonmotor/

American Parkinson Disease Association ::Home
Welcome to www.youngparkinsons.org

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:
►Programs & services that focus on education, networking & wellness.
►Personalized and confidential one-to-one service.
►Help managing young onset PD as effectively as possible so you are able to live well and stay strong!

Creativity Gallery on website of http://www.pdf.org/en/creativity

PD Newsletters (available by web, e-mail digest, and snail mail)

Superb e-newsletter (and snail-mail version available, too) about international and national news on Parkinson's out of Seattle:
Northwest Parkinson's Foundation (NWPF) Improving the Quality of Life
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 "Resource Links" (link below)
Northwest Parkinson's Foundation (NWPF) Improving the Quality of Life -The Tip Jar
and Northwest Parkinson's Foundation (NWPF) Improving the Quality of Life - Resources

Internet Support Group Websites, and Books Published by PWP's (Persons with PD) also referred to as "Parkies":(you'll learn the most from fellow PD folks)

Parkinson Pipeline Project a website/list-serve run by Parkies
as is Parkinson's Disease - NeuroTalk Communities

National Parkinson Foundation's Discussion Corner Forums (http://www.parkinson.org/NETCOMMUNITY/Page.aspx?&pid=467)National Center for Complementary and Alternative Medicine [NCCAM] - nccam.nih.gov Home Page 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.

Excellent Web site: CLOGNITION, about our cognitive problems caused by PD, at http://www.clognition.org/community.htm. It's a must read-a really educational, (and funny) site, created by "Parkie" and Michael J. Fox Board member, Carey Christenson .
CHE: Collaborative on Health and the Environment : Parkinson's Working Group http://www.healthandenvironment.org/working_groups/parkinsons
Incredibly important group to join, (and subscribe to e-mail alerts)
CHE PD Working group's leader, Jackie Christensen, is from Minneapolis, and a dynamic woman in her 40's with PD.
Recommended Books

Jackie Christensen (see above) wrote an essential book for the newly diagnosed:
Parkinson's Disease: An Essential ... - Google Book Search : The First Year---Parkinson's Disease: An Essential Guide for the Newly Diagnosed: Jackie Hunt ChristensenJackie also just released, in 2009,:
"Life With a Battery-Operated Brain - A Patient's Guide to Deep Brain Stimulation Surgery for Parkinson's Disease" (Paperback) http://www.amazon.com/Life-Battery-Operated-Brain-Stimulation-
"Living Well, Running Hard: Lessons Learned from Living with Parkinson's Disease" Superb book 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, TeamParkinson's. http://www.amazon.com/Living-Living Well-Running-Hard-Parkinsons

Amazon.com: 100 Questions p; Answers About Parkinson Disease (100 Questions & Answers about . . .): http://www.amazon.com/Questions-Answers-About-Parkinson-Disease/dp/0763704334/ref=sr_1_1?ie=UTF8&s=books&qid=1215472241&sr=1-1Abraham Lieberman

The Parkinson's Disease Treatment Book: Partnering With Your Doctor; T. Eric Ahlskog; Oxford U Press; Oxford University Press: The Parkinson's Disease Treatment Book: J. Eric Ahlskog

Political Advocacy
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 up.http://www.parkinsonsaction.org/
National organizations:

Parkinson's Disease Foundation (PDF) - Hope through Research, Education and Advocacy PDF - Parkinson's Disease Foundation, Inc. Home
National Parkinson Foundation: NPF.org

Michael J Fox Foundation: http://michaeljfox.org/

Mohammed Ali Foundation: http://www.maprc.com/home/default.aspx
Opportunity in NY to Fundraise for a Cure (and create your own fundraising website):
Parkinsons Unity Walk: annual Central Park fundraising walk; http://www.unitywalk.org/

Art, Creativity and Parkinson's
For artistic inspiration, Creativity and Parkinson’s - Parkinson's Disease Foundation (PDF) , 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.
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.Assistive Devices (Useful Especially for PD Folks)
(most are insurance and Medicare reimbursable if doctor's scrip sent to dealer before purchase)

Electric Scooters, Power Scooter from The SCOOTER Store 3 Wheel and 4 Wheel Motorized Scooters
"Go-Go Ultra-lite" model can have seat lifted off and fit in trunk of car. Rides easily through doors of restaurants and stores.
(Purchase from Scooter Store or Pride Mobility to assure security of warranty)

U-Step Walker *FREE SHIPPING* for Parkinsons Disease from ActiveForever.com-: (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.
Sturdy, with comfortable seat, and folds for car trunks.
Shwinn's Recumbent Exercise bike is easy to ride, and offers many levels of workout.

"Through Our Eyes": NY Parkinson's Speaker's Bureau; Presenting "PD's Lesser-Known Symptoms"

2009-06-03T08:09:00.009-04:00

Through Our Eyes: PD's Lesser-Known Symptoms

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 living with PD who are either members of the health care professions themselves, and/or experienced patient advocates or public speakers. 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.

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.

Lesser-Known Symptoms, (and Lexicon), of Persons with Parkinson's

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. 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 reported), that the speaker may be "about to act crazy." Likewise, "I'm frozen" (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. 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.
·
Turning “Off” or “Freezing:” 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.

“Parkinson’s Mask”: 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.

Drowsiness or Insomnia, and Physical and Mental Fatigue: 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.
Unpredictable balance inconsistencies: 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 the sudden drops in blood pressure common to PWP’s.

Bradykinesia: a stubborn slowness of our limbs, which attacks without warning, often minutes after we appear to be symptom-free.
Medication or Dosage Failures": 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.

Speech irregularities: 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 our speech down, and increase 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.

Dyskinesias: 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 by a drop in levadopa, and still others speculate a connection to the adrenal symptoms. Whatever the cause, they can be extremely disabling abnd 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.
Cognitive Disruptions caused by PD, can precede the onset of motor symptoms by as much as ten years. These 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. 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. 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.

Use of Expresive Arts to Treat PD
While depression and anxiety can be treated by antidepressants, they 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 PDF.org website under the sidebar, “Living with Parkinson’s.”

For further information, please contact Leonore Gordon, LCSW, at leonore1234@aol.com, or by phone at (718) 783 1986, or (347) 489 9123.

Through Our Eyes: Persons with Parkinsons Have a Voice

2009-06-03T07:18:00.006-04:00

On 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.

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.

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.

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.

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.

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.

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.

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.

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.

Attached to this site is a more detailed hand-out about the lesser-known symptoms of Parkinson's.

For contact info on speaker's panels, please contact
Leonore Gordon, LCSW
leonore1234@aol.com

Web Site for Creativity Gallery: http://www.pdf.org/en/creativity