» Not letting Dystonia define me
Not letting Dystonia define me
|I have a neurological condition that is known as Cervical Dystonia. I have had it since early childhood and it can be very painful. Mine is known as a focal Dystonia as it is in one part of my body. It affects certain muscles in my neck.
There is a good explanation here
Dystonia is a very strange condition indeed. It has some Parkinson's symptoms but usually stays static and rarely progresses. I take medication to reduce the tremor associated with the haywire brains' incorrect signals. You see that is the odd one. A Dystonia sufferer's brain sends information to the wrong muscle groups. You instruct your head to look forward and yet your looking right. The struggle to look forward is hard. You fight with your muscles constantly as they go into painful spasm. Then the tremor is there as the brain fights for control. I won't lie, it is not nice.
I am hoping, together with the millions of sufferers, that one day a cure will be found. I have seen people quite a lot worse than me and I feel an affinity with all my fellow Dystonians. I have been to London and Oxford seeing the best people but we are no closer to a cure.
There are some fantastic support groups out there.
Once I became obsessed with having deep brain stimulation. I went to Oxford Radcliffe hospital to be assessed, but I had just had botox treatment, meaning I was advised it was only a mild form and the risks of the operation are quite high. Years afterwards I am glad I did not do it. The surgeon was interviewed once by Brian Cox on his programme about science in medicine. It was about controversy and was incredibly interesting. They interviewed Professor Aziz who was the main DBS exponent as he used around 100 Macaque monkeys to get the procedure right. The monkeys were purposely given Parkinson's disease. Professor Aziz's did not waver when he explained that he did not regret the experiments as over 100 thousand sufferers have successfully been treated. I am extremely torn now I have been associated with the DBS unit. The first patient teated with DBS was a Dystonia patient. My mind can not take in the thought of experiments on animals.
There are some great videos from Dystonia Europe here;
Alistair who reminds me so much of myself here as he explains how you feel when you have the condition
Ross explains incredibly well about living with Cervical Dystonia in my video section
An inspiring story from David
Category: Odds and Sods |
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