I’ve always considered myself to be someone with a strong desire to learn. This is manifested in many different ways. When making a major purchase I will gather as much information as possible about whatever it is that I am considering purchasing to reduce the possibility of making a decision I will regret.
Regarding my health, I will consult medical experts and read as much as I can to learn as much as I can about whatever health problem I am experiencing. Doing so helps reduce anxiety and makes me feel more in control.
When I started having symptoms of what I would learn about a year later was Parkinson’s disease (PD), I did not hesitate to find the possible causes. I went online and read as much as I could about the symptoms I was experiencing (stiffness in one hand and shoulder pain).
I saw several different physicians seeking answers. After numerous MRIs, X-rays, and blood tests, I was diagnosed with PD, which at the time I knew almost nothing about. It was then that my research of PD started in earnest.
Not focusing on progression
I read several books, articles, blogs, anything I could to increase my knowledge about this disease that was now a permanent part of my life. But I would not be honest if I had said I wanted to learn as much as possible about PD.
In the books I have about PD, I chose to briefly scan the chapters on advanced PD despite my desire to learn all I can about my disease.
Other than knowing the importance of exercise in slowing progression and what generally happens in each of the five stages on the Hoehn and Yahr rating scale (one of several scales used), I have decided not to focus on disease progression in my research.
Coping strategies for me
Denial? I don’t think so. I know PD is a chronic, incurable, and progressive disease. However, choosing not to focus on the later stages of PD - particularly the fifth stage of the scale does help me cope with PD.
It’s not that I don’t know about how the disease can and does progress. Over the years, I have seen several of my Rock Steady Boxing classmates progress to the point that they had to drop out of the class. Many have passed away due to complications from PD.
I know that those who have PD are like snowflakes in that we are each different and don’t experience PD in the same way. There is a saying that if you know one person with PD, you know one person with PD. In other words, not everyone will have the same symptoms or the same rate of disease progression.
Other coping strategies I have found useful are maintaining a daily exercise routine and surrounding myself with persons with PD who are positive and as committed as I am to delaying disease progression. We support and encourage one another and understand what each of us is going through.
Do you or a loved one use smartphone apps to help with PD management?