Hello,

It’s me again. It’s hard to say why I am writing today. It’s hard to say why I stopped. Life is hard. Harder than it was before, maybe, maybe not. New Year, new me? Definitely not.

I remember when I started to write, when I was 40 and going to change the world in regards to OT. Provide information, inspire people to get the word out in regards to this terribly frustrating and debilitating illness. Somewhere along the way, I became side tracked and started to write about my personal life more and more. Of course it’s all related I guess.

So, the WHAT. What is OT? Orthostatic Tremor, Shaking leg syndrome. Most people reading this know the answer to that by now. Most likely you have it or know someone who does. If you don’t know, ask. For me, it’s become something that I know I’ll have forever. For others, it’s something you just realized you have today.

WHO are the others, who am I? I been diagnosed for five plus years now. I’m now 45. I have been shocked to read about many more that are my age or under who have been diagnosed. I’m also shocked by the number who have been misdiagnosed or don’t know what’s going on. Still so few of us in the grand scheme. The forgotten, the never knew or don’t know. I still, to this don’t day do not know what to say to people if they ask if I’m okay, or what’s wrong with me. Try telling them Orthostatic Tremor and see the blank stare on their face. Tell them it’s something like Parkinson’s disease, and they say ohhhh. Movement disorder is my go to now.

WHY? I don’t know. Your doctor will guess, but they don’t know. They don’t what to do, except try everything that you or I have told them that has worked for others. But have they really worked. Do you wake up one day and say, “hey it’s gone”. They don’t know more or less than we do. Environmental, possibly. Genetics, probably not. Bad luck…. We all have our own experiences and not many are the same. We do the best we can. We know what we can and can’t do, and for how long we can do it for. So, I’ll start at the beginning, stay on track, listen more, learn more and see if we can’t help more.

Who am I? I’m a son, a husband, a father, a pharmacist, and I’m one of you. Thank you.

My name is Matt Pezzone, and I have OT.

One thought on “What? Who? Why?

  1. I am currently frustrated with Dr Torres Diego myself, because I see him disputing the most current Mayo research on OT – https://www.researchgate.net/publication/342418790_Slow_Orthostatic_Tremor_Review_of_the_Current_Evidence/fulltext/5ef348ce299bf15a2e9d0aa0/Slow-Orthostatic-Tremor-Review-of-the-Current-Evidence.pdf?origin=publication_detail
    I would like him to do more research and less disputing.
    I read the same thing you spoke of in this blog and felt frustrated also, because research has proven falling is not an OT problem. I feel very weak when standing because of tremors wearing me out.
    I am tired of research hashing around old research too. I want current research.
    I am so glad you write. 😊 blog on…

    Liked by 1 person

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