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It ain’t easy going it alone. You’re a caregiver for someone with Parkinson’s, but you don’t have a robust support network, which makes sense if you think about it.
The relationships you’ve built over the years weren’t based on a mutual interest in Parkinson’s caregiving. But gradually over time, your every day has become commanded by the needs of the person with Parkinson’s in your life.
Your foodie buddy might be more interested in the new food truck than your same old woes. Your bestie might feel more like a lessie when they stop returning your texts. Your other family member probably has a very important career.
Your responsibilities as a caregiver aren’t compatible with the friendships you built, not in the same way as the relationships were built in the first place. The reality is, most relationships aren’t ready to bear the burden that’s at the center of everything you do.
You don’t have to go it alone though. Because there are lots of people on the internet looking for the same kind of support you are. You’ve got to take the first step.
Joining an online community for support and information along your Parkinson’s journey is arguably the easiest first step. Those people who want to help you and be helped by you are inside your pocket.
My top pick for now? MyParkinsonsTeam.
MyParkinsonsTeam - spoken My Parkinson's Team - is a free social network for people whose lives are affected by Parkinson’s disease. It helps people get emotional support and practical advice from other people in similar circumstances.
They welcome both people with Parkinson’s and people associated with people with Parkinson’s. Hey caregivers, that’s you!
It’s actually part of a larger organization called MyHealthTeam, which creates separate community instances for different chronic diseases. They’re building separate social networks to serve over 43 chronic illnesses.
I’m writing to you a full week after joining the MyParkinsonsTeam community. My eldery father suffers from Parkinson’s disease and Parkinson’s Disease Dimentia. My mom is his primary caregiver, and my wife is his secondary caregiver. That leaves me on Easy Street as his tertiary caregiver. I’ve got a full-time remote job, so I get a free pass.
So what’s it like on the first try? You can create an account from a computer or mobile phone with an internet connection.
The mobile app is available on the App Store for iOS and Google Play for Android and it’s got an overall cleaner user interface than the website myparkinsonsteam.com. If you’re one of those people who doesn’t like loading your phone up with apps, then try it on the website first.
If you don’t want to use your real name, then use email to sign up, and pick the anonymous display name you like. Other options include Login via Google or AppleID, but those will set your display name to be your real name by default.
That happened to me, but I was able to change my display name in my account settings right away. I don’t have a perfect relationship with my own emotions. Putting myself out there for the first time, I’m much more comfortable being anonymous. You too?
The anonymity for me was the first big perk of using MyParkinsonsTeam.
In the past, I’d joined several Facebook groups for Parkinson’s caregivers, but just poked around without ever sharing anything because Facebook uses my real name. My faceless moniker on MyParkinsonsTeam changed the game.
Since I was anonymous, I was free to vent. Upon joining, I was prompted to share my story, and I did. No cuss words or abusive language, but I was able to say exactly how I was feeling in the moment. Over the next hour, I got a handful of likes and hugs.
That’s the second big win for MyParkinsonsTeam. It lets you vent right away.
Looking around and other people who are joining and sending their stories, it’s the most common mental state. People are joining MyParkinsonsTeam at rock bottom or at a moment where they’re feeling overwhelmed.
People with Parkinson’s saying “I was recently diagnosed…”, and caregivers saying, “I can’t take this anymore…”. The people joining need help and don’t know where to turn.
Those likes and hugs feel great. By letting you speak your mind anonymously and get responses from other people in the community the first time you use it, MyParkinsonsTeam helps you cope with your situation as soon as you join.
Other than likes and hugs, some people put me on their team. In MyParkinsonsTeam, a team is like a follow on instagram or twitter. It puts the person in your teams section so you can keep up to date with special people you meet long term.
I’ve joined for just a week, so I can’t tell you whether or not my team members are in it for the long haul. But getting put on people’s teams feels validating. You can invite them to your team too to reciprocate the validation should they accept.
So far, I’ve added four people to my team. The person I really feel hopeful about is a caregiver who’s approximately my age with a mom whose Parkinson’s is approximately at my dad’s stage.
Imagine that?! I’m not alone for real this time.
I didn’t scoop up accurate statistics, but it appears the community members are about 90% people with Parkinson's and 10% Parkinson's caregivers.
Before I joined, I wanted to meet other caregivers who I could relate to directly, and those people exist on MyParkinsonsTeam.
But being in a community with people diagnosed with Parkinson's was surprisingly sobering for me. I put myself in their shoes and imagined how I’d deal with it if I were diagnosed. I felt compassion for them.
Being a caregiver sucks, and being a person who gets Parkinson’s sucks too.
Until then, my dad was the only person with Parkinson’s I’d ever spoken to. Seeing these stories put the uncomfortable truth front and center.
I think it’s called cognitive dissonance. How can I feel sorry for these strangers but only resentment for my father in the same situation?
Everything I’ve written to you so far happened in the one hour timespan of my first session on MyParkinsonsTeam. But how’s it going to play out long term?
Every day since joining, I’ve received emails from MyParkinsonsTeam telling me someone has interacted with me.
That’s another thing I really like. You don’t have to come back to the app or website to know when someone in the community is reaching out to you. Call it a positive social loop that brings me back when someone is showing they care.
In the very beginning I came for support, and these emails are keeping it coming.
Inside the app and also sent to you via email, they’ve got all kinds of Parkinson’s-related blog-style articles, with stuff for both patients and caregivers.
I’ve skipped over these so far. The motivation to learn is tough enough when you’re not feeling well. I came for the community, and that’s enough for now.
The only thing I’ve found frustrating about the experience so far is crappy search. I can’t remember how I found that one person with remarkably similar caregiving circumstances as me, and I tried but failed to do it again.
The platform has been around for over six years as of 2022. I know that because I’ve run into posts from people from six years ago.
By the laws of probability, there must be more people like that. Everyday a person with Parkinson’s dies, another is diagnosed with Parkinson’s.
I wish I could find those profiles and read their posts from start to finish, but MyParkinsonsTeam crappy search has buried those golden threads of future me wisdom deep into the internet abyss.
I’m keeping my resolve to stay active on the platform. True growth takes time. I’m still figuring out how to extract the most value from the platform. These are my plans moving forward, and my tips for you:
