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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