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Social media and Parkinson’s
I’ve seen a few people comment in this community that going out in public post-diagnosis can sometimes be anxiety provoking. This, in turn, can lead to a lot of social isolation. Is this something you’re experiencing or have experienced? Has social media helped you stay connected to people and events when you don’t feel comfortable going out “in real life”?
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5 Replies
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Hi, Ally,
Yes, there are times that going out can be anxiety-provoking – I need a rollator or I fall, but this (and the cane that I used before) were actually cues that I have a disability and need help. People are great with doors now. Before I’m pretty sure they thought I was drunk. I’m glad to have enough energy to go out; I have long since stopped worrying about what strangers think.
But you also asked about social media. I used it a lot at the beginning to find people like me. Now that I go to Rock Steady Boxing, this has become my most important support group. I still get info from the internet, but except for PD research group on Facebook – which is only about PD research – I read info from Davis Phinney Fndn, and other legit sources, and a few PD blogs.
I also have a condition similar to MS and I have to use social media for support because it’s quite rare. The support community is much smaller than for PD, but just as welcoming and supportive.
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Hi Frances, thank you for replying! I’m happy to read you’ve connected with some people online who can relate to your health circumstances, but I’m even more glad to read that you’ve connected with people in real life through Rock Steady. I know I’m not the first to say this, but human beings are not meant to be alone – we’re wired for connection with others. Social media is a great way to augment in-person relationships but nothing compares to sharing face time (not the kind on the phone screen!) with another person.
Do you and your Rock Steady friends hang out outside of your fitness classes?
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Ally, I avoided saying anything on FB in public for a long time, over 5 years. As a blogger (Twitchy Woman, My Adventures with Parkinson’s)who writes about living with Parkinson’s, I created a separate FB page for my blog. That way I could still keep it a “secret’ from my friends. Well, one day I posted something about Parkinson’s on my personal page and the world did not come to an end! In fact, I found unexpected support from many who see my FB page and I have been “out” ever since.
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I’m so glad you feel more comfortable being open about your PD with your Facebook friends, Sharon! I’m sure that initial PD post on your personal page made you feel a little nervous, but I’m so glad you found that your friends were more accepting and supportive than you had thought they might be. How long have you been writing on your blog? Do you use a pseudonym on the blog or have you fully integrated the two online identities?
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Hi, Ally,
Yes, sometimes my Rock Steady friends go to lunch after class, but many people still work, so not as often as we’d like.
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