I saw this Parkinson’s support ‘post’ yesterday. “I was diagnosed with Parkinson’s disease after the past couple of years of stiffness and unsteadiness. I am off sick from work and numb with worry about my future. Only 47 with four teenage children. Hoping someone will tell me what to expect?”

I too was numb, fearful and tearful when given the diagnosis of Parkinson’s 15 months ago. What to expect? My limited knowledge suggested the slippery slope of deteriorating degenerative disease. Now I am stable and back to my pre-Parkinson’s state. Stiffness about 80% better; weakness 80% better and able to walk 14 km, dance, play tennis, and enjoy life.

When first told the diagnosis, I waited for the initial shock to wear off. I felt my anger at the peremptory way the diagnosis was given. £275 for the private consultation as well, after an NHS waiting list of six months. I had been advised by the consultant to take L-dopa as Sinemet 25/100 three times daily (Carbidopa 25mg/levodopa 100mg), as the drug treatment of choice without other suggestions and a one-year follow-up. I had to decide whether the estimated 25% of wrong diagnosis applied to me.

Research

I started to research using medical libraries and the Internet. My symptoms fitted and there was no diagnostic marker of certainty. This was a clinical diagnosis and the consultant was fully qualified and an expert in his field. Stiffness in the shoulders and upper back with generalised weakness, sleep disturbance and brain fog were real enough. My REM sleep disorder – present for eight years – in research studies leads to a 50% increased likelihood of Parkinson’s disease. I found an association with disturbed gut bacteria. I will cover this more in a future blog.

I suspect that many of you have had some similar experiences of facing a difficult diagnosis. What would have made a difference to you?

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