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inbody, October 5,  2019  10:25am EST

My story

I'm not really why I'm posting this other than I'm not sure where else to do it. I usually don't feel comfortable sharing my story for fear of seeming "attention-seeking".

When I was 22 I started having symptoms of Parkinson's disease. I was diagnosed with PD when I was 30. When I was 34 I suffered a TIA that has left me disabled, essentially lowering my right side strength and jumbling up my communications center. I'm now 36, approved for full disability and wondering what does the next 30 years look like? I'm mostly mobile and able to care for myself, I'm just unreliable and my energy is completely different day to day. Most who meet me have no idea I'm not well.

Thank you for reading. Again, I'm not sure what I'm looking for. Just trying to accept where I am.

3 Replies
  • AHAASAKatie
    AHAASAKatie, October 7,  2019  11:00am EST

    Thank you so much for sharing your story with us! I know it can be hard to get started talking. However, it is wonderful that you are here and talking to us now. Best Katie

  • Spooky75
    Spooky75, October 7,  2019  4:49pm EST

    Thanks for joining us - and for being brave enough to share what you're going through. Sharing your story doesn't make you an attention-seeker. Rather, I think it gives you the opportunity to not only help others, but to also meet people who have gone through similar things. I've found that what's really helped me in the year since my stroke is telling people about it - particularly people in places like these, because these are people who can relate. 

    I was particularly struck by this in your post: "Most who meet me have no idea I'm not well." I totally understand that. I walk a lot slower than I used to, and stairs remain my nemesis. When I let people walk ahead of me, I sometimes mention that I had a stroke a year ago. They're always shocked. Always. It's weird, because that stroke impacts me every single day, and most people don't know it. 

    Please reach out to us here whenever you need to. We're all here for you!



  • Jro80424
    Jro80424, November 21,  2019  9:20pm EST

    I had several TIAs this past Tuesday on the side of a trail while mountain biking. I was transported via Flight for Life to closest hospital. I was released the following day and tests have shown there's no permanent damage to my brain or heart. I was one of the lucky ones but I am suffering emotionally and life is very difficult right now. I feel a bit hopeless at the moment. Especially when someone says, It could be a lot worse." Yes, it could. But please, let's all validate one another that it is pretty bad right now and that's ok. It will get better but for right now I have to acknowledge that this is definitely not an ideal situation.

     I live alone and have a lot of acquaintances who are fairly unavailable and don't understand what I just went through. On the outside I look ok, but I'm not able to carry a bag of dog food inside the house to feed my dog right now. I carried a cup outside and filled her bowl. I'll figure that out tomorrow. Long story short.... Everything seems very difficult. I wasn't able to go grocery shopping this evening so I luckily I had a few healthy items in the fridge I could cook for dinner. I don't really know what I'm trying to say either besides you're not alone and together we can accomplish what seems unsurmountable alone. Thanks for posting.


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