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:

• Rock Steady Boxing: https://www.rocksteadyboxing.org/find-a-class/
• Dance for PD: http://danceforparkinsons.org/find-a-class/class-locations
• Delay the Disease: http://www.delaythedisease.com/for-people-with-parkinsons/dtd-exercise-classes/

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:

• Downloadable video (free): https://www.davisphinneyfoundation.org/resources/parkinsons-exercise-essentials/
• Streaming exercise class, Daily Dose: https://theparkinsonsfitnessproject.com/services/
• Dance for PD, DVD/CD/Downloads: https://danceforparkinsons.org/at-home-dvd
• Delay the Disease has a new book and DVD: https://www.amazon.com/Delay-Disease-Exercise-Parkinsons-Disease-2nd/dp/0999108107/

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).