Re: PD Progression?

[Camilla Flintermann <flintepc@xxxxxxxxxx>]

Hi Wendy---if you haven't done so, you could get lots of excellent free
info from the national PD organizations.  Here are some numbers to call and
helpful websites---and if you look on janet's site I believe you will find
the Hoehn & Yahr "Stages of PD" list.  Just remember that not everyone has
the same symptoms or the same stages and that's why we call it a "designer
disease".

***********

Here is a partial list of useful addresses,including   some internet sites,
culled from various sources:

*   janet paterson's website--general information and many good links



*   Art Hirsch's website--lots of good links.



*   The easy way to find a MOVEMENT DISORDER SPECIALIST is to dial
1-888-400-2732.  This toll free number will ring in the American Parkinson
Disease Association Information & Referral Center.

*National Family Caregivers Association: (301)942 6430  or 1 -800 -896 -3650
Memberships are $20. yr. for individuals and  includes such things as:
Take Care", an informative mewsletter with advice and resources
CG-to-CG Peer Support Network, to help CG members find a friend in similar
circumstances
"The Resourceful Caregiver", a resource guide filled with information other
advocacy and awareness -raising activities
Costs are in US currency, and Canada residents are asked to include an
extra $12. for postage
A call to the 800# will get you a useful FREE packet of information.

*   Addresses for national PD organizations  in the USA:

        American Parkinson Disease Assn.(APDA)
        60 Bay St.,Staten Island, NY 10301
        (800) 223-2732
          (includes directory of support groups)
       and  (good info re: Congress)

        Fax: (718) 981-4399
       E-mail: apda@xxxxxxxxxxxxxx
        *********
        National Parkinson Fndtn.,Inc.
        1501 N.W. Ninth Ave. , Bob Hope Road, Miami,FL 33136-1494
        (800) 327-4545       e-mail:  mailbox@xxxxxxxxxxxxxxxxx      Fax:
305 548-4403
        
        *********
      Parkinson's Action Network   - PAN
      Website: 
      Address: 818 Suite C College Avenue
      Santa Rosa, CA 95404
      Phone: (707) 544-1994  or (800) 850-4726     Fax: (707) 544-236
      E-mail: pan@xxxxxxxxx
        OR
     Capitol area office:
     1001 Pennsylvania Avenue, Suite 850 North, Washington, DC 20004
     Phone: (202) 628-2079    Fax: (202) 737-4242
     E-mail: pandc@xxxxxxxxx
     A nationwide advocacy organization
        *************

 Parkinson's Disease Foundation   - PDF
 Website: 
 Address: 710 West 168th St. Third floor -  New York, NY 10032-9982
 Phone: 212-923-4700 or 800-457-6676     Fax: 212-923-4778
 E-mail: PDFCPMC@xxxxxxx
        OR
 Midwest office:
 833 West Washington Blvd., Chicago, IL 60607
 Phone: 312-733-1893

*   National Institute of Health Research News Parkinson's Disease
        

*   Awakenings
          (open forum)

*    The neuro website at harvard is an excellent resource:


     a psychosocial article is there along with an algorithm on managing pd
and some excerpts from                  the young parkinson's handbook and
a caregiver's handbook
        *********
 Parkinson's Institute
 Website: 
 Address: 1170 Morse Avenue, Sunnyvale, CA 94089
 Phone: 408-734-2800  or 800-655-2273 (Canada)  or 800-786-2978 (US) Fax:
408-734-8522
 E-mail: outreach@xxxxxxxxxxxxxxxxxxxxxxx
  An independent, not-for-profit organization conducting patient care and
research activities in the
  neurological specialty area of movement disorders.
        ************
United Parkinson's Foundation
NOW MERGED WITH THE PARKINSON DISEASE FNDTN.
                   ***********
* National Assn. for Incontinence, PO Box 8310, Spartanburg,SC 29305-8310
1-800-252-BLADDER, OR see their website at  
--ask for  their resource guide ,listing  products and services for
incontinence
        ***********

  Parkinson Foundations - Outside the U.S.  include:

European Parkinson Disease Association   - EPDA
Website: 
Address:Postbus 46
3980 CA Bunnik
The Netherlands
Phone: (31) 306-561-369
Fax: (31) 306-571-306
E-mail: not found      <<<<<<<<<<<<


Camilla Flintermann, CG for Peter 80/9+
Oxford, Ohio

<flintepc@xxxxxxxxxx>

           *  *  *  *  *  *  *  *  *  *  *  *  *  *  *  *  *  *  *
           *     Ask  me about the  "CARE " list    *
           *     for caregivers of Parkinsonians   *
           *                               *
           *  *  *  *  *  *  *  *  *  *  *  *  *  *  *  *  *  *  *



>Hi, I am relatively new to the list.  Is there any information on how this
>disease progresses.  I know that each individual is different, but would
>like an idea of what is yet to come.  I have right hand and leg tremor,
>rigidity and bradykinesis. Some days I am able to work at my computer an
>run the mouse ok and the next I really have to focus on it.  Also, some
>days I can remember things very well and the next I couldn't tell ya where
>I parked my car.  I am currently taking Mirapex 1 mg 3x a day.  I am
>really slow getting up and moving in the morning but after about an hour I
>am able to go run 4 - 6 miles a day.
>
>Thanks
>Wendy
>37 diagnosed 1/99