Stumbling On Information I Needed

When I was first diagnosed with PD, it was like being hit by a truck. There was so much information in books and on the internet, but what did I need to know? Who were all these Parkinson’s foundations? How would I even know what questions to ask? A year later, I know most of the questions, but the answers are still scattered all over. So I started a blog to help other pwp (people with Parkinson’s) and their caregivers, https://parkiesupport.blogspot.com/. I began with finding support groups and finding PD-specific exercise because those emerged as two of my most urgent concerns.

Where can you find support groups and where can you find exercise for PD? (everyone says to exercise, right?)

Turns out information about both can be found in many of the same places.

One way to find support and exercise is to call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) which has help in English and Spanish.

Another way is to check the American Parkinson’s Disease Association website. Using https://www.apdaparkinson.org/community/ enter your zip code or state, then click on Resources-and-Support. Then either click on Support or on Exercise.

While really helpful, APDA isn’t everywhere, and their lists are sometimes incomplete. So it may be time to use Google (or your favorite search engine). Try these searches:

  • Parkinson’s association mystatename. This will bring you other local PD groups like https://www.parkinsonrockies.org, who often have information on support groups and exercise.
  • Parkinson’s support group mystatename
  • Parkinson’s exercise mystatename

Also, look to see if national PD exercise programs have classes near you. For instance, check:

Once you have information about support groups, phone or email the contact person to find out about the next meeting. You may want to visit several, since each has a different “character.”

Be sure to discuss exercise with your doctor, both for your safety and for exercise ideas. Once you have information about local exercise classes, watch each class that interests you, and talk to the coaches and participants. To join a class you are likely to need a doctor’s signature, but this doesn’t have to wait until your next office visit; call your doctor’s office to find out how to submit the paperwork. Your exercise class may become an informal support group, too.

Of course you can exercise at home, too (though you might need a family member to spot you)

Don’t forget to discuss these options with your doctor, too. Some options here include:

The number of exercise programs you participate in is limited by your energy, your money (many classes cost money), and your time. As with support groups, there is nothing wrong with trying a program out to see what you enjoy the most (and are thus more likely to continue).

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (3)
  • Courage
    11 months ago

    Thank you for sharing this great information!

  • Chris H. moderator
    12 months ago

    Thanks so much for sharing this, @franbl. This is a really great collection of valuable resources available to those with PD. Getting a handle on all of the information out there can definitely be overwhelming, so I’m glad you took it upon yourself to make it easily found! Thanks again! Glad to have you here in the community. – Chris, ParkinsonsDisease.net Team Member

  • FranBL author
    12 months ago

    You’re welcome. I really wanted something like this when I was first diagnosed.

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