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TRANSLATE

Tuesday, March 8, 2016

Parkinson’s took my voice – now I need to get it back for my daughter’s wedding

March 8, 2016

Elan Shoffman with his daughter, Amanda CREDIT: ELAN SHOWMAN
I  used to dive under boats as a frogman in the Israeli navy to find bombs, but now I am preparing for my biggest challenge yet: giving the father of the bride speech at my daughter’s wedding. Writing a speech seems easy enough. You think of a few jokes and tell your daughter how beautiful she looks.  But what if you just can't get the words out? 

Elan Shoffman with his daughter, Amanda


In 2006 I was diagnosed with Parkinson's disease.People with Parkinson's don't have enough of a chemical called dopamine, because nerve cells inside their brain have died. Without dopamine, sufferers’ movements become slower and we experience tremors and muscle stiffness, meaning some days something as simple as getting off the sofa can feel impossible. One person in every 500 Parkinson’s. That's about 127,000 people in the UK.  I am part of a high profile club. The condition has some celebrity sufferers, including boxer Mohammed Ali and actor Michael J Fox. Both have had their careers stumped by the condition and while I have never been in the ring or on the big screen, Parkinson’s has hit me in the same way. 


Michael J Fox.I had to retire from a business in North London that my brother and I had built up over 30 years as I just couldn’t stand for long periods. The fatigue was getting too much.   


One of the symptoms of Parkinson's is muscle stiffness; I now walk a lot slower than I used to, and I've ditched fiddly shoelaces for easy-to-use velcro. I need help with shopping and have given up driving.  But it’s not just my arms and legs that have suffered. Many don’t realise the effects Parkinson’s can have on speech. You don’t appreciate the importance of the muscles around your mouth and your tongue until they begin to get weaker.  You need strength around your lips to make the right shapes so the sounds of words can be formed and said clearly.
Now that some of my facial muscles have collapsed, a simple task like dictating this article to my son takes five, six times as long as it should. And it effects how people see me as a person. Suddenly I can’t smile in photos or stick my tongue out at my granddaughters. I could be sitting opposite you at dinner and look miserable despite having the time of my life. 
With his granddaughter

But it's the speech loss that is the hardest to deal with. Trying to say what I think can feel like rolling a rock up a hill. First my brain has to process the words, then I need to swallow to avoid the typical build-up of saliva that Parkinson’s sufferers get. If I get that far, I then have to hope for enough strength in my tongue and mouth to form the phrase in my mind.
Often, by the time the words get to my lips, the conversation has moved on.
This can leave me, and thousands of other sufferers, left sitting in silence with the words stuck in our head, causing loneliness, anxiety and isolation. It's a situation that makes itself worse: your voice is like an instrument, so the less you use it, the harder it is to use the next time you try.You can imagine how much public speaking scares me. Ever since my daughter Amanda broke the wonderful news that she is to wed in August, I've been plagued with the fear that I won't be able to perform on the day.

Elan Shoffman with his daughter and two sons, Marc and Jason

One of the symptoms of Parkinson's is muscle stiffness; I now walk a lot slower than I used to, and I've ditched fiddly shoelaces for easy-to-use velcro. I need help with shopping and have given up driving.  But it’s not just my arms and legs that have suffered. Many don’t realise the effects Parkinson’s can have on speech. You don’t appreciate the importance of the muscles around your mouth and your tongue until they begin to get weaker.  You need strength around your lips to make the right shapes so the sounds of words can be formed and said clearly.
Now that some of my facial muscles have collapsed, a simple task like dictating this article to my son takes five, six times as long as it should. And it effects how people see me as a person. Suddenly I can’t smile in photos or stick my tongue out at my granddaughters. I could be sitting opposite you at dinner and look miserable despite having the time of my life. But it's the speech loss that is the hardest to deal with. Trying to say what I think can feel like rolling a rock up a hill. First my brain has to process the words, then I need to swallow to avoid the typical build-up of saliva that Parkinson’s sufferers get. If I get that far, I then have to hope for enough strength in my tongue and mouth to form the phrase in my mind.
Often, by the time the words get to my lips, the conversation has moved on.
This can leave me, and thousands of other sufferers, left sitting in silence with the words stuck in our head, causing loneliness, anxiety and isolation. It's a situation that makes itself worse: your voice is like an instrument, so the less you use it, the harder it is to use the next time you try.

                      


  • *Elan Shoffman and his family are running a crowdfunding campaign to fund his speech therapy and make an awareness raising documentary on the effect of NHS cuts on Parkinson’s support services. Find out more at www.crowdfunder.co.uk/the-speech-thinking-loud

  • http://www.telegraph.co.uk/men/thinking-man/parkinsons-took-my-voice--now-i-need-to-get-it-back-for-my-daugh/?



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