https://www.gofundme.com/research-for-orthostatic-tremor

Since it’s a new year and many may have forgotten or have more questions about what OT actually is, I’ve decided to give a brief refresher.

1.  OT is an extremely rare Neurological disease.  How rare?  Approximately 1 to 5 people per million have been diagnosed.  So, if we go with 5, that means at most only 1,800 out of 360 million Americans may have OT.  So if you’re playing the Mega Millions or Power Ball, your chances are roughly the same.

2.  What are the symptoms or what does it look like.  OT is a weight-bearing tremor, that shows when a person stands or leans or puts any type of pressure on a particular part of the body.  The tremor in most cases stops when we sit down and lessens while walking.  It usually takes between 5 to 30 seconds for the tremor to start upon standing.  However long we stand determines the severity of the tremor and it will radiate throughout the entire body.

3.  How is it treated? Too put it frankly, it’s not.  None of the medications are very effective in stopping or lessening the tremor.  I have found that physical therapy has helped me with my core and leg strength, enabling me to withstand the tremor longer before needing to sit. This may not be the case for everyone.  OT is very exhausting and if you’re not in good shape or are inflicted with other medical conditions can be damn near devastating.

4.  So what’s the good news?  OT is a relatively slow progressing disease. Most people do not get walker or wheelchair bound until many years with the disease.  If you are lucky enough to have a career in which you sit, you can work productively for a long time.  I have met many wonderful people senior to my age that are not only wonderful to be around, but are very intelligent and are hidden gems to society.

The bottom line is that there is no cure, no viable treatment and no known cause of the disease.  Money for more research and study and trial and error are needed desperately.  That is why I have started and ending this post with a link to a GoFundMe campaign for research money.

Most importantly is that we the people with OT must stay positive, active and maintain a sense of humor with the disease.  So if anyone reading this message hits that Power ball tonight, I expect a very large donation in the near future!!!

More personal experiences to come in future blogs.  Thank you for reading, commenting and most importantly Sharing these posts. Have a wonderful bone chilling week if you are on the US east coast, and as always God bless!!!

Matt

 

https://www.gofundme.com/research-for-orthostatic-tremor

2 thoughts on “Refresher on Orthostatic Tremor (OT)

  1. Matt,
    Is this like Parkinson’s? I would like to know more and understand better. You have a very special place in my heart since Jameson. Pray for healing for you. God does miracles every day. Keep me posted….
    Love, Debi

    Like

    1. Hey Deb,

      There are similarities to Parkinson’s. I do show some early Parkinson’s traits. The tremor now is only while I’m standing. It’s a very high frequency tremor, that gets worse the longer I stand or fatigue. Hope that explains it a little better.
      Love ya,
      Matt

      Like

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