Finding support - support groups

One of the hardest things was finding a support group close to me.  I was desperate to talk to somebody else who was going through this.

Turns out there are a couple of places I found to check out:

If you prefer the telephone, you can call Parkinson’s Foundation Helpline at toll-free Helpline at 1-800-4PD-INFO (1-800-473-4636).  Their Spanish Helpline is at the same number.

If you prefer the internet, there are two places I found helpful:

                1) American Parkinson’s Disease Association- has information for many local areas (though not all resources, they have a lot).  Go to https://www.apdaparkinson.org/community/    Enter your zipcode or state. You'll see something like this:

Then click on Resources and Support, and then on Support Groups to get a list:

                But ADPA isn’t everywhere, so look for other local PD groups, like Parkinson Association of the Rockies https://www.parkinsonrockies.org/programs-services/support-groups  They cover  Colorado, Wyoming, and western Nabraska.  See #2 below for how to find other organizations/support groups.

                2) Since APDA has an incomplete list (although they have a lot), you may want to dig deeper.  Using your web search engine (Google, Bing, DuckDuckGo...) you can look up support groups for your area.  I suggest that you use your state, since the perfect resource might be one town over from your town, and you’ll miss it if you only ask for your town.  I’ve found that “near me” search wasn’t as helpful either; your results may vary.  Here’s the search that I found the most helpful.  Just put in your own state name.

                Google parkinsons support group statename

APDA will be there, but other groups may show up, too.

                Also, ask your doctor, your local senior center, your dentist, your physical therapist, the school nurse, everybody.  You never know who has a family member with PD who might know of useful resources. 

When you find information about a support group, make sure to get a contact person and phone/email.  Don't just show up because the time or place might have changed. Reach out to the contact person – they can tell you lots, including sometimes the name and contact information of the person who is running the group now (this is volunteers, remember).  Find out when the next meeting is, and if there is a particular topic being discussed.  Often this is a good person to ask questions of, too. 

Don’t assume that you won’t have anything in common if you are younger than the “typical” PWP;  yes, it would be good to find a Young Onset PWP Support Group, but sometimes age is just a number.  Having PD in common is often an instant ice-breaker; you probably won’t have identical symptoms, but the things that drive you crazy, and the worries, will often be the same.   

Also, you might want to check out several support groups.  Each has its own character and strengths. 

I found a great group, but they meet the same time I have boxing, and I don’t give up much for boxing.  So I go to a different group unless the first group has a program is of special interest to me.  

A support group is a great place to ask about doctors you are thinking about going to, responses people have had to treatments, and just about anything else you can think of.  It is wonderful to be in a room with people who understand what you are going through, what you are feeling, and who may become wonderful resources for you. 

Finally, there are online support groups, too.  But that’s a topic for another time.

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