HELP!! spouse looking for support - Parkinson's Disease Message Board

laur912 · 11-20-2008, 06:19 PM

My husband has early onset parkinson's and I have so many issues to talk about. I can't find a support group in my area and I thought I'd find some help on this board. I am 57 and he is 59. He just started on Sinemet and so far is hasn't helped, but it's only been 2 weeks and he just started on the "theraputic dose" tonight - that is, 1 1/2 tabs 3x daily.
He is still pretty ok - can work, do most of the things he used to, etc. But I'm having a lot of trouble accepting that he has this disease - he seems to be growing older so quickly. He does not have much energy, his movements are slower, he speaks SO softly, shuffles, and seems very frail, etc. I am very "young" for my age and this is especially difficult for me to accept. I started seeing a therapist today but I don't see how she can help - it's something I have to accept and maybe that just takes time. I am looking for people to talk to who are going through a similar experience and I thought that this was a good way to find that support. Please answer if you are out there!!!!
Thanks sooo much. L

sunshine221 · 11-27-2008, 07:48 AM

L

First there are some other websites with more active discussions for both PWP (people with parkinsons) and caregivers - I saw one as a link on this page but I'm not sure I can reference it by board rules, etc. What was encouraging there is to find people who are similar aged and also people with very slow progression of the disease.

I'm 50 and have had symptoms for 4 years -- its frustrating. My husband and kids do not accept the diagnosis - even last night my husband told me to stop reading these boards and my son, home for thanksgiving, told a family friend "Mom's just limping around the house".

Is he seeing a neurologist? I see a motion disorder specialist in Rochester (NY) and he's great. You might want to do some reading and ask if perhaps Mirapax or Requip might be a better starting drug than sinemet which is known to have long term issues.

My best advice is however to stay active - EXERCISE as much as he can and then do some more. I swim, go to Curves and walk on a treadmill as well as do stretches, etc. We travel as much as we can and while it "may not look pretty due to my gait issues" I can hike up to 2-3 miles.

The Office for the Aging in this area sponsors a support group and I've gone a few times even though I'm ten years younger than the next youngest but they just had a physical therapist speak and give some good advice on exercise. If you see a PT make sure he/she has experience with PD patients.

Basically we all develop different problems as we age. In my case I'm just glad I don't have the diabetes that has struck most of my extended family and as my doc says the good news here is that it can usually be controlled with medicines.

Good luck and stay calm and supportive.
Sunshine

sfgina · 11-29-2008, 10:23 PM

My husband, we THINK, doctors differ, that he has early onset Parkinson's. He is in his mid 40s. I am not convinced. It takes an autopsy to know for sure. The meds (Sinemet)make him act weird and LOOK like he has Parkinson's, but one doctor told us that Lymes disease is often mistaken for Parkinson's.

Just a thought.
g

sunshine221 · 11-30-2008, 08:54 AM

G
Are you(your husband) seeing a neurologist. From what my doc, who is a PD specialist, says, today's theories are to start with Requip or Mirapex instead of Sinemat.

Also - as PCP or other doc if they have done a Lyme screening. Many will give you a hard time about it and Lyme tests give both false positives and negatives.

But especially if your diag was not by a neurologist, you might want to get a second/third opinion. My husband still doesn't believe my diag even though now four doctors, three of them neurologists have told us that I have PD (I'm 50 and have had symptoms for almost five years).

Sunshine