Hello Larry Arky---being in denial is par for the course, but here you are
asking good questions! In addition to Dr. Charlie's reply to you, I'll add
that my husband has hot sweats and cold shivers at times that seem
inappropriate in relation to temperature of room,etc. Others have also
reported this and it seems that in PD the internal thermostat gets "out of
whack". If you are sure that there's no other obvious cause, you may
chalk it up to PD. I would add that Peter who is now 10+ years since he
diagnosed himself, did not experience this until a few years after the
diagnosis. You might want to tell us more about yourself--age, whether
you are seeing a neurologist who is a PD or Movement Disorder specialist ,
whether you are employed, have a caregiver (CG) , what area you live in,etc.
There'sd lots of good FREE info available from the PD organizations---I'll
append some resources below in case you need them. Welcome aboard.....
****************
Larry wrote:
>I was diagnosed with PD last Friday and I am still in denial. I have
>been a vegan for the last 4 years and now feel that lifestyle helped
>caused my PD because of a lack of B12. My main discomfort comes from
>getting cold hands when the weather drops to the 70s and I start to
>shiver and shake. and my body temp goes to 95. My thyroid checks out OK.
>Dr. has no answer to why it happens.
>
>Larry Arky
***************
From: Camilla Flintermann <[log in to unmask]>
Subject: Re: Help!--and how to get it!
Hi new members---there are lots of good resources available for learning
about PD. Here's a partial list to give you a start:
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
http://www.geocities.com/SoHo/Village/6263/
* Art Hirsch's website--lots of good links.
http://www.fortunecity.com/meltingpot/farley/817/blynx.html
* 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
http://www.apdaparkinson.com/ (includes directory of support groups)
Fax: (718) 981-4399
E-mail: [log in to unmask]
and: APDA Chicago Area Chapter (new address)
Glenbrook Medical Office Bldg. South, Suite 127
2050 Pfingsten Rd., Glenview, IL 60025
(847)724-7087
E-mail: cac [log in to unmask]
*********
National Parkinson Fndtn.,Inc.
1501 N.W. Ninth Ave. , Bob Hope Road, Miami,FL 33136-1494
(800) 327-4545 e-mail: [log in to unmask] Fax:
305 548-4403
http://www.parkinson.org
*********
Parkinson's Action Network - PAN
Website: http://www.sonic.net/~pan/
Address: 818 Suite C College Avenue
Santa Rosa, CA 95404
OR
Capitol area office:
1001 Pennsylvania Avenue, Suite 850 North, Washington, DC 20004
Phone: (202) 628-2079 Fax: (202) 737-4242
E-mail: [log in to unmask]
A nationwide advocacy organization
*************
Parkinson's Disease Foundation - PDF
Website: http://www.pdf.org
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: [log in to unmask]
OR
Midwest office:
833 West Washington Blvd., Chicago, IL 60607
Phone: 312-733-1893
* National Institute of Health Research News Parkinson's Disease
http://www.nhgri.nih.gov/DIR/LGDR/PARK2/
