Looking for Parkinson's support groups/etc. suggestions
January 21, 2020 10:38 AM   Subscribe

Looking for some kind of support group, online is fine, for a parent who is in the initial stages of Parkinson's who lives far away.

My dad on the opposite side of the country was diagnosed with (pre- ?) Parkinson's a couple of years ago. Visiting my parents over the recent holidays, it is apparent that things are going off the rails more since the last time I saw him. I noticed a lot of troubling behaviors, and want to find some resources to help me understand and/or see if there is anything I can do on my end. My mother is shouldering a lot of stuff during all this so I want to help out as much as I can.
posted by kilohertz to Health & Fitness (5 answers total) 2 users marked this as a favorite
There's an online site called smartpatients.com that has different communities, including one for Parkinson's. I'm not involved in that one specifically, so I can't say if it's good or not. But I've learned a lot from the community for my cancer.

Members of my SmartPatients group include patients, relatives, and caregivers. So you could join yourself or he could or your mother could. Or all three.
posted by FencingGal at 10:50 AM on January 21, 2020 [1 favorite]

Michael J. Fox foundation has a pretty informative website, including a page on support groups.
Stanford has a Parkinson's disease center that has both local and online resources, including a list of online support groups.

Long distance caregiving is really hard, you're doing a good thing by trying to learn what you can and share the weight with your mom.
posted by assenav at 10:58 AM on January 21, 2020 [1 favorite]

Seconding MJ Fox, it's a strong organization. It's also worth looking at what's offered by the American Parkinson Disease Association.

For medical care, look for "movement disorder" clinics; many of them will also have support groups.
posted by underthehat at 12:10 PM on January 21, 2020 [1 favorite]

The Davis Phinney Foundation has been a great source of support and information for my family since my dad was diagnosed a few years ago.
posted by GoldenEel at 12:52 PM on January 21, 2020 [2 favorites]

The other side of what country? If it's the US, memail me and I can find you local resources. The social worker at his movement disorders specialist's office would be a good person to talk to as well. (He is seeing a movement specialist, right?)

The #1 piece of advice I'd give someone in your situation is to convince your mom to set up a respite system now instead of burning herself out or waiting for a crisis.

As for information about the disease and what to expect, MJFF, APDA, and Davis Phinney are all great. Also, the Parkinson Foundation does a lot of educational webinars and has helpful flyers / brochures. They will also mail him a free "Aware in Care" kit which is like a fanny pack full of goodies (info cards) to hand out if he is ever hospitalized.

Best of luck.
posted by basalganglia at 6:03 PM on January 21, 2020 [2 favorites]

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