I have a lot of friends and family that live far away and I hardly ever see them. Well pretty much never. The vast majority of them don't know what I'm going through because I haven't told them. For the longest time , I couldn't put my finger on why I try to hide the fact that I have Parkinson's. Finally came up with the words to describe how I feel about letting loved ones know. It's because I don't want this disease to define me. I don't want to be thought of as the guy with Parkinson's. Yet every minute of every day some limitation I have to deal with reminds me that I am dealing with this, be it slowness, stiffness or tremor when I try to do something with my hands, and so it really creeps deeply into my soul! You can't ignore it . How do you cope with this? I know people are supportive but I would never want to be the guest of honor at a pity party. As time goes on, the symptoms get more and more obvious, but I still feel like I'm just in the beginning of this stage. Up until recently nobody really noticed. Now it's getting really hard to not notice. I also think I might be a bit of a perfectionist and am holding myself to impossibly high standards. By the way , I was diagnosed 8 years ago so I guess you could consider my progression to be slow, so I guess I'm pretty lucky in that sense.
As of today I am doubling my thiamine!
I welcome your thoughts on this, thank you .
❤Bassofspades
The more people you tell about your Parkinson’s the more you are spreading awareness which is much needed. And you can inspire people with your tenacity and strength. It takes a lot of courage and strength to reveal our vulnerability and pain.
May I ask, 8 years in, are you still working? I’m at a crossroads trying to determine my path forward.
Thanks for your reply. I had been working up until a month ago. Job got to be too much for me so I got approved for disability.
I’m glad you were able to get approved for disability. 8 years is a long time to work with PD. I think you should be very proud of that.
I of course don’t want PD to define me either but I refuse to be ashamed or embarrassed.
I have Parkinson’s and it sucks but I’m damn proud of how I’m handling it and you should be too. I’ve read many of your posts. You are informed and optimistic and proactive. Your friends and family should be inspired by you.
You can inspire your friends and family with how strong you have been these 8 years. But I hope you don’t mind my saying, you deserve compassion and support and TLC too.
Thank you CC my good friend !
Ah, thank you Bass of Spades! We are in this together!