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Too much for some to handle

I am determined not to let this disease define who I am but it does define what I am fighting through my diet and exercise regimen. I love baseball (the Yankees), eating right and listening to music on my iPod. In 1996 I went to the state fair of Texas and went on a ride called the zipper that spun around really fast My head never stopped spinning for days and I wound up in the ER with what was diagnosed as vertigo, was given a prescription for a motion sickness drug and sent back to work in the high stress world of stock trading. Fast forward to 1997 when I was playing baseball in the heat of TX when I started having trouble gripping the baseball⚾️.Thinking I had pinched a nerve somehow, I went to see a doctor who knew my history and that I was from the north he knew right away to order an MRI.

You can all figure out the rest of this story. I am currently working diligently on a happy ending to my story. On one of the first copies of my resume, I ironically listed raising funds to help people fight this nasty disease, now I truly know how nasty it is. I guess I was asking for it. I consider myself very fortunate that a former employer signed us up for a permanent disability policy which with my SS disability and divorce settlement has provided me with enough to live and maintain a comfortable lifestyle with my parents. I contribute as much as I can while maintaining my gym membership and transportation expense. I also find myself at a loss trying to think of things to talk about, save for the large strides I have taken with my recovery from my last exacerbation shortly after the turn of the millennium. At the time I was prescribed 4AP for my walking which I later found that can cause one to have a seizure. Combine that drug with the heat of the TX summer and you had the perfect conditions for a severe exacerbation. Since then I’ve returned to my childhood home, lost my drivers license (thankful for Lyft and other similar services), do all of my shopping online while trying to preserve some money for anything that may come up. So I believe it’s an art to living with this MonSter and I think I’ve accomplished that as evidenced by my disability test scores. My advice is don’t give up on improving your outlook or disability scores.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Julie
    3 years ago

    Hey, Gooch, I guess I can reply even if you are a Yankee fan. I won’t hold that against ya! KC Royals here.

    Staying active is so important with this disease. My mom worries over me at all times. She wanted to put a lift on the stairs in my house. I declined. I told her I was still on my own 2 feet and as long as I was able to walk, I was going to.

    I love getting in the pool for exercise. Most gyms have them. My physical trainer told me the pool offers resistance while making it feel easier to exercise. I love it.

    I understand about the heat. It makes me hide inside in the AC most of the summer. I hope you continue staying as active as possible. It’s one of the most important things we can do. Take care.

  • DonnaFA moderator
    3 years ago

    Hi Gooch, thanks for being part of the community and sharing your story with us.

    Please know that you’re not alone and that we’re here to share support and a friendly ear. We’re sending all good wishes for your happy ending. -Warmly, Donna ( team)

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