PD Patient Support Services in NY City & Long Island


PD Support Services 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 Fresco Institute for Parkinson's & Movement Disorders | NYU Langone ...
nyulangone.org/locations/fresco-institute-for-parkinsons-movement-disorders

We help people with Parkinson’s disease and movement disorders to achieve the highest possible quality of life. At the Marlene and Paolo Fresco Institute for Parkinson’s and Movement Disorders at NYU Langone, our mission is to advance treatment, education, and research 

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! Support groups 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 PDEarly-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 


Recommended Primary Care Physicians:
Brooklyn, NY  
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)


BROOKLYN PARKINSON'S GROUP & DANCE FOR PD:
Offering Free Singing, Dance, Movement & Exercise Classes 
www.brooklynparkinsongroup.com
Superb organization with support groups, and dance, singing, Movement Lab and exercise classes for persons with PD. Most classes permit participation of family members or caregivers. Contact 
DanceforPD.org 
Dance for PD and Sing for PD classes in multiple locations Brooklyn, Manhattan, the Bronx, Queens & Staten Island  and New Jersey   (Wednesdays at 2 in Brooklyn) are sponsored in collaboration with Mark Morris Dance Group (MMDG), a world renowned modern dance company 
located at 3 Lafayette Ave., one block from Brooklyn Academy of Music. 
Listen to an NPR radio story about class: Parkinson's Patients Find Grace In Dance : NPR
danceforpd.org

Movement Lab taught by Pamela Quinn
Class locations in NYC & Brooklyn. website pamelaquinn.net/videos
pamelaquinn.net/videos
(Fridays at 2 at MMD building): 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! 

Sing for PD classes, multiple locations
(First, third and 4th Wednesdays from 1-2 at MMDG building) participants sing standards and Broadway tunes to live piano accompaniment. 

Exercise for PD & Rock-Steady Boxing 
 Twice-weekly exercise classes with weight-training and aerobic workout Aerobic and boxing by Janice Mason (see post below), and supervised use of weight machines. Tues. and Thursday am 9:30-11:45.(Two one-hour sessions in each class, each with 1/2 hr aerobics and 1/3 hr weight machines) 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 Amerigo.Rossi@liu.edu for appointment. (718 488 1542) New 10-week session begins May 24, 2016

Recommended Allied-Health Care Practitioners

Acupuncture  
Brooklyn: 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)

WorldParkinsonscongress.org

Danceforpd.org
Superb informational website about the benefits of dance for people with Parkinson's, with numerous articles,
and detailing classes and training programs for dancers who would like to teach people with Parkinson's.

National Parkinsons Foundation:  parkinsons.org

Parkinsons Disease Foundation   Parkinson's Disease Foundation (PDF) - Hope through Research, Education and Advocacy 

PD 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.)

PDPipeline: pdpipeline.org

Web Forums Teaching About PD
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....
Michael J Fox Foundation: MJfox.org
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/
WorldpdCongress.org

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:
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)
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 invaluable info. from fellow PD folks)

Parkinson Pipeline Project a website/list-serve run by Parkies

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'shttp://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:
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)

"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.

2 comments:

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