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My name is Kenneth Pearson, known as Wayne. I was fortunate in being referred to a neurologist in February 2017 and was diagnosed with cervical dystonia. My neurologist specialises in movement disorders.

I first had uncontrollable tremor in both my hands. I started Botox soon after diagnosis and it has helped greatly with my tremors. I now have developed tremor in both my legs and some muscle weakness in the legs. I feel the disease is progressing because I now have that awful debilitating fatigue.

My medications are Gabapentin and Diazepam and most of the time these medications seem to help.

Probably the most distressing part of this disease for me is the unknown because so little is know about the disease and it’s prognosis. What frightens me is that there is no prognosis and I don’t know this disease will progress. Sometimes, I just feel so isolated and fearful of the future.

Well, that’s me. Would love to hear from others with similar fears.