Friday, June 5, 2009

New York City: Support Services of Excellence for PD Folks

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
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 

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
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

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 or 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:

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)

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:

 American Parkinson Disease Association ::Home
Welcome to

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

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 ( Center for Complementary and Alternative Medicine [NCCAM] - 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 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
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)
"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. Well-Running-Hard-Parkinsons 100 Questions p; Answers About Parkinson Disease (100 Questions & Answers about . . .): 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.
National organizations:

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

Michael J Fox Foundation:

Mohammed Ali Foundation:

Opportunity in NY to Fundraise for a Cure (and create your own fundraising website):
Parkinsons Unity Walk: annual Central Park fundraising walk;

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 (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.

Wednesday, June 3, 2009

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

Through Our Eyes: Understanding Life With 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 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.

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" 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, "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.
Note: Treatment can be tailored to be sensitive to these specific problems; for instance, if an
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.

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. 

Jackie Christensen: Persons with Parkinsons Have a Voice

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, 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

Web Site for Creativity Gallery: