Written by Jody Wright
Many people with Parkinson’s experience symptoms for years before being diagnosed. That’s certainly my story.
I started experiencing symptoms of Parkinson’s in my 30s. I can remember having no sense of smell and noticing that my handwriting was getting harder to read – both early symptoms of Parkinson’s. By the time I was diagnosed with Parkinson’s in 2003, I had already been living with symptoms for over 20 years.
Is This Part of My Parkinson’s?
As my Parkinson’s progressed, I started to feel lightheaded and lost my balance often. I even fainted occasionally. I knew something was wrong when I had an incident where I completely lost my vision and ended up falling down some stairs. I began to wonder if these serious new symptoms were related to my Parkinson’s. When I mentioned these issues to my doctor, I wasn’t able to get to the bottom of what was causing these symptoms or what to do about it.
I told my daughter about what I was experiencing; she thought these symptoms were actually signs of a condition she had read about called neurogenic orthostatic hypotension (nOH). I found out that nOH impacts people living with Parkinson’s and other autonomic nervous system disorders. I brought it up with my neurologist, and after four or five years of experiencing symptoms, I was finally diagnosed with nOH. It was a relief to learn that these symptoms weren’t just a part of my Parkinson’s and that there are ways to manage nOH.
After receiving the diagnosis, I sprang into action. I conducted my own research to learn about what causes nOH and how it can be managed. From there, I worked with my neurologist to develop a plan, which included taking medication, tracking my blood pressure, increasing my salt intake and staying well-hydrated.
Now that I have control of my nOH symptoms, I’m very passionate about helping other people who are living with nOH and Parkinson’s. I have had the opportunity to participate in several Parkinson’s events so I can share my story. For instance, last year, I attended The Victory Summit® educational event hosted by the Davis Phinney Foundation. The Foundation invited me to speak on a panel about life with Parkinson’s. It was exciting to meet other people with Parkinson’s and share our collective experiences.
Living with Parkinson’s and nOH has taught me that it’s necessary to take charge of your own health. Now, I record my symptoms, especially when I start a new medication, and I always go into doctor’s appointments prepared with questions. I also try to bring a friend or family member as support and to help me digest all the information I learn. Without my daughter’s help, it may have taken even longer for me to be diagnosed with nOH and to begin managing my symptoms. I’m grateful for the support I receive from my family and my Parkinson’s community, and I’m determined to continue to be an advocate for my health.
Read more about my journey and find helpful information, resources and support at nOHmatters.com.
To learn more about the impact of nOH on people with Parkinson's and their care partners, read results from the Harris Poll Survey here.
Jody lives with early-onset Parkinson’s disease and neurogenic orthostatic hypotension (nOH). She is passionate about sharing the story of her journey and helping others in the Parkinson’s disease community advocate for their own health.