Parkinson's Support Group

[Precious44]

I have looked in my area for a support group, I was unable to find one that was close. So, in September 2012 I started one at the local senior center. I have the backing of APDA and the local hospital. It took almost 5 months of work and promoting, but I did it. So, if you don't find what you need..then start it. This is one of the reasons I have been absent from this site and others.

[froggatt55]

Well done Precious44. When I was diagnosed nearly 11 years ago, I was, initially, in denial until a friend got my local branch to contact me. I and a few others soon started an active persons group an that has gone from strength to strength Although I have subsequently moved away, I keep in touch with the group and we have exchanged visits.

I think it is so important to have a Support Group so I think the PwP in your area should feel very lucky to have you in their midst

Kind regards

Bob

[soup]

Well Done, I don't think other people realise the positive effects volunteering has on the volunteers either. It takes you out of yourself and for a few hours you feel useful again. Good luck to you and your group.

[srarndt]

Huzzah! Kudos to you! I love your "can do" attitude!

Best wishes!

Steve Arndt

Bisbee, AZ

[maryalice]

What a great thing to do! Good luck!

[ftadh]

Where do u live I have a great support group in Ireland makes all the difference

[Billynh]

Thanks I live in New Hampshire up in New England I've found a support group but not in my area I've just started on carbidopa-levodopa and have noticed my symptoms have gotten more severe I have no idea what's next as I'm confined to my upstairs room as I've falling down them several times and the bathroom is upstairs so I pretty much stay in bed now I'm finding it hard to concentrate and am very forgetful I was told I've probably had this condition for years it just went undiagnosed

[quirkyme in reply to Billynh]

my husband just started on C-L and he seems a bit better. Is there any way you can get a stair lift? We are trying to keep him physically active, walking and working on his balance. It's important to do this or you get de-conditoned and frail.

We do have to be proactive and not procrastinate. It's good in that you meet good people. Is there a town nurse or council of aging. Please make some calls and follow up. Also look up apda.org American Parkinson Disease Association. They have groups all over. I co-lead on in MA and there are lots of them in Conn, RI, and MA so there must be some in NH.

[CassieB in reply to Billynh]

Billynh I live in Vermont we are neighbors. Can I ask you do you see a movement specialist or just a neurologist?

[Billynh]

As for my falling down them I meant my stairs just to clarify I am also extremely depressed and I have no hope I keep thinking if it's this bad now what will it be like a couple years from now and I'm angry that it went so long undiagnosed one doctor told me I had carbon monoxide poisoning and his nurse asked me if I'd been sucking on exhaust fumes wtf !!

[quirkyme in reply to Billynh]

get a CO monitor for your house. There might be a faulty oil burner in your home or gas stove.

My husband has sleep apnea and is so much more alert when he uses it. Do you snore. It's very common in PD patients. So is depression. Is there a depression support group in your area. I did a program for our local PD group and people got a lot out of it. I think almost everyone with PD has it to one degree or another but there is help, both medicines and talk therapy. The support from a PD group can be helpful. You don't feel so alone with this disease.

[Billynh]

Thankyou I live in a newly built housing unit where my rent is based on my income but I just can't do the stairs all the time some days I can other days I can't and yes I have bad sleep apnea and have a cpap machine I use every night I suppose just finally getting a answer to why I've been so tremulous and falling down should have brought some relief I just never expected it to be pd and maybe I haven't fully accepted it yet as my doctor was very blunt when telling me so at least I found this site where I can vent some of my problems I will look into your suggestions thanks hugs from NH

[windwsprer]

Thank you. If I can overcome my inertia I might do the same. Do you have a program each time you meet or is it more informal? I attended a support group for a while near my workplace but the person running it ran out of steam. Where I live, I have not found one. I've been thinking a lot about volunteering at a hospice, but maybe this is a better idea. Thanks again for the idea.

[Precious44]

Well it's 5 years later and the support group that I started just moved because we have gotteb $$c atoo many people for the room that we had been using. We are also in the process of putting together a Presentation for the community of Tracy, Ca. Hoping to educate them about Parkinson's disease.