Sue Waight

I am a 61-year-old woman who was diagnosed with Parkinson’s disease (PD) at age 59, which apparently is a common age for women to be diagnosed. My parents both had Parkinson's, but of my four siblings, I seem to be the only one who has inherited it. The first symptom I noticed was that my left hand would twitch, especially in the evenings, but not every day. I also went walking with my husband one day and found I didn't have the strength to walk up some steps. It took me several attempts to climb them. Then we took our three granddaughters to some hot pools, and I was waiting in line with my youngest. I noticed I got very cold, and when I did, I didn't just shiver — my whole arm was shaking so badly that I had to try to hold it still with my good arm.

I had trouble getting my general practitioner to refer me to a specialist, as he stated that he had not noticed any tremors while we were talking. I told him that it didn't happen all the time, but enough — coupled with the other events — that I felt there was merit in seeing a neurologist who specialized in Parkinson's disease.

I was referred and saw the neurologist, who very quickly diagnosed me with Parkinson's. I then realized I had some non-movement symptoms as well, which I simply hadn't connected with PD. I had been experiencing swallowing issues for at least 2 to 3 years and had recently lost my sense of smell; nobody put two and two together and realized these symptoms pointed to Parkinson's disease.

I was devastated but not surprised, and it took a month or so before I felt I could come to grips with the diagnosis. One day when I was searching online for Parkinson’s resources, I came across the Parkinson’s Foundation. Reading stories from other people with PD helped me realize I was not alone. I quickly found my best way of dealing with Parkinson’s was to create a blog, which I started in January 2021 and is still ongoing. Writing allows me to process my thoughts and feelings, and I hope that my words help others in the way these personal stories helped me.

I continue to work as a social worker in a hospital — working, ironically, in a neurological ward. I am still active and plan to work for a few more years, before I retire and hopefully am able to travel with my husband.

Let others in the Parkinson’s community know they are not alone.
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