Resources

[Beckey]

You may be familiar with some or even most of the organizations on this list, but others -- especially newly diagnosed folks -- may find it helpful. Most of my posts are of the "Help! Help!" variety. Time to contribute something different!

American Parkinson Disease Association (NY)

Phone: [phone] or 800-223-2732

apdaparkinson.org

Bachman-Strauss Dystonia & Parkinson Foundation (NY)

212-682-9900

dystonia-parkinsons.org

California Advocates for Nursing Home Reform (San Francisco, CA)

415-974-5171 or 800-474-1116

canhr.org

Family Caregiver Alliance (San Francisco, CA)

800-445-8106

caregiver.org

Med Help International PD Community

medhelp.org/forums/show/201

Michael J Fox Foundation for Parkinson’s Research (NY)

800-633-4298

michaeljfox.org

Movement Disorder Society (Milwaukee, WI)

414-276-2145

movementdisorders.org

National Institute of Neurological Disorders and Stroke (Bethesda, MD)

301-496-5751 or 800-352-9424

TTY 301-468-5981

ninds.nih.org

National Parkinson Foundation (Miami, FLA)

Toll-free helpline 1-800-473-4636

Parkinson.org

National Rehabilitation Information (NARIC) (Landover, MD)

301-459-5900 or 800-346-2742

naric.com

Parkinson’s Action Network (Washington, DC)

202-638-4101 or 800-850-4726

parkinsonsaction.org

Parkinson Alliance (Kingston, NJ)

609-688-0870 or 800-579-8440

parkinsonalliance,org

Parkinson’s Disease Foundation (NY)

212-923-4700

pdf.org

PD Index

Directory of PD information online

pdindex.org

Parkinson’s Institute and Clinical Center (Sunnyvale, CA)

408-734-2800 or 800-655-2273

thepi.org

Parkinson’s Resource Organization (Palm Desert, CA)

760-773-5628

parkinsonsresource.org

Patterson Medical/Sammons Preston (Bolingbrook, IL)

Offers a selection of home health aids: grab bars, shower chairs, hand grips, reacher sticks, sock and stocking aids; aids for buttoning and special zipper pulls.

800-323-5547

sammonspreston.com

Wardrobe Wagon Special-Needs Clothing Store (Fairfield, NJ)

800-221-8929

wardrobewagon.com

[parkie13]

NICE!

[Boyce3600]

Wow!! That took a lot of time. I, for one, am very grateful to u. I am sure everyone else here is , too.

[Rebtar]

Thanks so much, great list.

[JohnPepper]

I don't want to be negative about the good work that all of these organisations do on our behalves. But my bitter experience has been that our National Pd Association and all the National Pd Associations in countries that I have visited to give my talks, did everything in their power to prevent me from speaking to their members. They did not want their members to believe that THERE IS SOMETHING THEY CAN DO TO REVERSE SOME OF THEIR PD SYMPTOMS.

What they all told their members was, "WE CANNOT ENDORSE ANYTHING THAT HAS NOT BEEN SCIENTIFICALLY PROVEN". I never asked them to endorse what I do!

I can be very generous and say that many patients will not get any benefit from hearing what I have done, but that is life! If I can only help 30% of all Pd sufferers; that is possibly 3 million people throughout the world. That is 3 million more than they have helped to overcome their Pd symptoms by those National Pd Associations.

Having been the President of our National Association for over 5 years, I knew that the Association could not have financially survived without donations from the drug companies here. Those companies paid more than 50% of our cost of running the Association. So they could very well have put pressure on the Association to oust me from my position.

I would say that any National Pd Association that receives funding from the pharmaceutical industry is unlikely to do or say anything that would encourage their members from doing anything that might help them to get better and stop taking any further Pd medication.

Am I being unrealistic?

[Despe in reply to JohnPepper]

More realistic, one dies, John! Don't believe in any organizations receiving FUNDING from pharmaceutical companies, promoting their DRUGS!! Clinical trial after trial, and they are still haven't found the "cure". . . .

[JohnPepper in reply to Despe]

We have to be realistic. Why would any company, that produces medication for any health problem, spend a fortune on finding a cure for that problem? A cure would remove a constant market for medications designed to treat the symptoms, and that means they would lose that turnover. Would you do it any differently? If somebody wanted to start a pharmaceutical company with the intention of finding a cure for one illness at a time and then marketing it, that person would do very well. But the cost involved in finding a cure would be very high.

In recent times we have witnessed the outbreak of Ebola, which killed thousands of people., and it took less than a year to find a way of stopping it spreading and helping those that still had it to get better. If they can do that for a killer disease, they can do that for Pd.

[Hikoi in reply to JohnPepper]

.....all the National Pd Associations in countries that I have visited to give my talks, did everything in their power to prevent me from speaking to their members......

Really, I dont believe that for one minute. I doubt national orgs would notify national membership for people on speaking tours not just you. I really dont think they put barriers to stop you.

[JohnPepper in reply to Hikoi]

Why am I surprised? In New Zealand, Australia, Canada, USA and England, the organizers of the talks all asked their national Pd Associations to tell their members about my planned talks. They all got the identical response, as indicated above. The exact wording I am unable to give you but what I quote above is the gist of it.

[Springfield78]

Thank you!

[meandpd]

A good list of mainstream organizations, thanks. Reminds me that I've been meaning to pull together a list of "complementary and alternative" organizations and people - such as John Pepper, Bianca Molle, Alex Kerten, Dr. Costantini etc. Contributions (not monetary!) of names and groups welcome.

[danfitz in reply to meandpd]

Here is a contribution for your alternative list:

ibogainealliance.org/ibogai...