Even though I was diagnosed with Parkinson’s five years ago, I never really found a support group that I could relate to during the last five years. Locally, most support groups that I was aware of were made up of people that were much older than me so I felt I couldn’t relate to them.
So, I primarily got my support from Facebook groups, which I frankly found a bit unfulfilling.
Last winter I begin, searching for Parkinson’s on TikTok. To my surprise, I found a vibrant community of content creators who were near my age, and going through the same things that I was. It was amazing to find these people and also, it was especially impactful on me, that I could see them in video. For the first time I felt that I found people that I could relate to. @mellilove675 was one of those people.
Watching these creators, inspired me to start posting myself. For me, posting was almost therapeutic in that I could put my experiences out there and find an audience that truly understands what I’m experiencing.
That’s how it started off anyway, then it soon turned into raising awareness. As I posted and shared my experiences, I found that people were finding comfort and answers in my content. To my amazement, people were actually telling me that I was helping them in the comments of my videos.
My posting on social media has become so rewarding and fulfilling for me. I’ve never been happier than I am now in regards to having Parkinson’s. I truly feel like I’ve found my people within the TikTok community that I participate in…
I started posting because I felt very invisible with this disease. Everyone would say you look fine but I wasn’t fine I really wanted to try and explain what I was feeling so maybe people would look past the outside symptoms like tremor and realize there is a lot more going on that you can’t see.
I started posting because I was looking for other Parky’s that i hoped would make me feel like there’s s sliver of hope to get this disease under control, I know that’s far fetched right now but communication is important We need all the he;p we can get.
I was having “off” times every day and they keep getting longer I try everything my MSD says but nothing seems to work so I decided to join some groups that have had success with different types of remedy’s or ideas that might make this disease less intrusive on my life. Good luck to all of us. Lad I found ParkyChat.
Ditto to what everyone else has said. I started because my personal goal is to be more than just a person with PD. We all do so many other things that aren’t related to PD. I want to try and inspire others to see, remember, or not forget that you may be a person with Parkinson’s, but you’re so much more.
My Uncle passed away in 2020 with Parkinson’s. My Aunt has the disease. This past week lost an important person in my life with the disease and I know a few other people who also have it. I wanted to spread awareness and help people as much as I could. I felt that Parkinson’s isn’t talked about much not as much as many other diseases. Awareness brings in much needed money for research. I want a cure to prevent others from suffering from this disease that is why I spread awareness as much as I can even if I possibly drive people crazy with constantly talking about it.
