Learning to live with a progressive neurological condition such as Parkinson’s Disease is never an easy process. There is a stigma attached to Parkinson’s that causes so many of us to find it difficult to accept the diagnosis. After all, most people think it is an old man’s disease that causes tremors and a shuffling walk. It was certainly not something that I, a 57-year-old woman, could identify with nearly 13 years ago.
I had been having some health issues over the years. I didn’t sleep well and I was achy. However, I was very active in my community, played tennis weekly, went to yoga and other exercise classes. I had the opportunity to travel with my husband all over the world on his business trips. Not feeling great wasn’t going to stop me.
How I discovered I had Parkinson’s
In March 2008, I started to have some strange new symptoms. I would be writing and my foot would start twitching. It would come and go. Then I fell and broke my left leg, just above the ankle. Not long after, the twitch in my right foot came back. This time it didn’t go away and by January it had spread to my hand. My general practitioner sent me to a neurologist to see what was going on. He said that I had a Parkinson’s like tremor, gave me a prescription for Ropinerole and no information about Parkinson’s.
Earlier that month I found out that I had very early Stage 1 Breast Cancer. I was going to have surgery the following week, so maybe the neurologist was trying to minimize the PD. So I did the same thing. I basically ignored it while going through radiation treatment after the surgery. Meanwhile, the neurologist gradually raised the dose of Ropinerole. I soon reached a point where I was having hallucinations at night. I called my general practitioner and said I refused to go back to the neurologist. He took me off the medication and sent me to a Movement Disorders Specialist.
This was the first step towards acceptance for me. I immediately bonded with the new doctor, who I still see today, 12 years later. She confirmed that I did have tremor dominant Parkinson’s, which is usually a very slow developing type of PD. She gave me information about Parkinson’s, told me to exercise more, suggested a few supplements to take and referred me to a few websites. Unfortunately there was not much on the internet at the time, but it was a major step in the right direction for me.
Eventually she put me on a few Parkinson’s medications, but not carbidopa/levodopa. So my tremor progressed gradually over the next 5 years. I was still trying to hide my tremor, but people were starting to notice it. Friends started asking me if I could talk to someone else who was newly diagnosed with PD. Since I had not actually told any of my friends about my PD, I was surprised each time someone called me.
Sharing my adventures with Parkinson’s
About the same time, I attended Fox Foundation symposium. This was the first time I went to any Parkinson’s related event. I dragged my husband with me so that we could both learn more about the disease. At that event, I met people who would change my outlook on having Parkinson’s. I saw that not all People with Parkinson’s fit the image I described above. I met a young woman in her 30’s who took up boxing to combat PD. I was moved by her speech and how boxing changed her life. I now consider her one of my treasured PD friends.
Shortly after that event, I decided to start my blog, Twitchy Woman, My Adventures with Parkinson’s. I wanted to write it for the people who were asking me for help. And I still was not admitting to my friends that I had Parkinson’s. Then one day, I made a mistake. I posted my blog on my Facebook page by accident, not on the Twitchy Woman page that I had created. Five years after my diagnosis I finally admitted to the world that I had Parkinson’s and guess what…nothing changed! The world did not collapse. No one treated me differently. It was a relief to not have to hide it anymore.
The next major turning point for me was starting Levadopa/Carbidopa. It was literally a life-changer. My tremor disappeared completely for about six years. It has gradually come back, but it is not nearly as bad as it was before. I am still on a very low dose of medication, although we have adjusted it slightly over the years.
So nearly 13 years into this journey, I am living very well with Parkinson’s Disease. I am still writing my blog and have become very active in the PD community. I have met many amazing people with Parkinson’s Disease from around the world. I look forward to talking to them on Zoom and seeing them in person in Barcelona for the World Parkinson Congress in 2023. Parkinson’s Disease is not something I would wish for, but it has changed my life for the better in so many ways.
Spot an error in this article? A typo maybe? Or an incorrect source? Let us know!