April is Parkinson’s Awareness Month. And since I am among those diagnosed with the disease, I should write about it. The Parkinson’s Foundation estimates more than 1,000,000 people living in the US have been diagnosed with Parkinson’s with approximately 60,000 added to the list each year.  Parkinson’s disease (PD) is a neurodegenerative disorder that affects predominately dopamine-producing (“dopaminergic”) neurons in a specific area of the brain called substantia nigra.

For me, it was a process.  In fact, it still is.  While I knew something about Parkinson’s Disease, my real education began in 2012.  That is when I began writing a column about a friend who died shortly after being diagnosed with Parkinson’s.  I recall searching for the correct spelling of the name of the disease and finding a page with the symptoms of Parkinson’s listed and swearing to myself as I identified with many of the symptoms.  Like most runners, when running and racing are not going well, I start looking for major body health failures to excuse poor performance. 

My most telling signs were fatigue, a trembling left thumb, small handwriting and a buzz in my head.  After efforts to find another cause failed, I found myself in Gainesville at the movement disorder center. I was fairly certain I knew what the answer was going to be, but the words “we believe you have Parkinson’s Disease” still hit hard. I was encouraged however when I was told “it is the slow-moving kind.”

There is nothing simple or easy about Parkinson’s or living with it.  In addition to being difficult to spell correctly, the diagnosis is based on a multitude of tests and a good bit of judgement.  It can only be confirmed for certain after death. Finally, every person’s Parkinson’s Disease is unique in some way. For this reason, more than any other, finding a doctor you have confidence in and who is a neurologist, experienced in movement disorders is critical.  I was truly fortunate to find one of the best at what is now known as the Norman Fixel Institute for Neurological Diseases. In fact, he is the director. The Institute “is home to scientists and clinicians at UF Health who are working on neurological disorders that afflict millions of people across the globe.”

The onset of Parkinson’s used to mean a quick end of an active lifestyle, and for some it still does.  But the therapies and medicines available have done a lot to change that.  Not surprisingly, exercise remains at or near the top of the “drugs” available.  It should be as intense as possible (using a sane person’s standards) but always subject to safety concerns like falling.  There might be some debate about what the best exercise is but there is no debate that for the vast number of people diagnosed with Parkinson’s Disease they should exercise as much as they possibly can.

And what about COVID? A recent study by the Parkinson’s Foundation Center of Excellence, located in Nijmegen, a city in the Netherlands, provides some good guidance.  The Parkinson’s Foundation reports:

“Overall, we know that people with Parkinson’s Disease (PD) who contract COVID-19 are more likely to experience severe respiratory issues and have more difficulty recovering from COVID-19 – particularly among those with advanced PD, compared to people who do not have PD.

Another additional concern for those with PD is that COVID-19 may trigger a worsening of both motor and non-motor symptoms and may increase the risks of mental health challenges. These mental health challenges are known to be higher for people with PD living under social isolation, higher stress levels and without adequate exercise.

Commentary recently published in the Journal of Parkinson’s Disease, titled, “COVID-19 Vaccination for Persons with Parkinson’s Disease: Light at the End of the Tunnel?” (Bloem et al., 2021), analyzes whether the COVID-19 vaccines are appropriate for people with Parkinson’s.

Experts from the Nijmegen Center for Excellence studied the development and approval processes – including the analyses of completed Phase III data as provided by vaccine developers in a transparent process with peer-reviewed publication of the full data sets.  They reached the following conclusions:

• Compared to the general population, the risk of SARS-CoV-2 infection causing serious, life-threatening disease seems higher for people living with PD, at least among those with more advanced disease.
• The approved mRNA-based vaccines are not known or expected to interact with the PD neurodegenerative process.
• COVID-19 vaccination is not known to interfere with the current PD therapies.
• The types or incidence of side effects of these vaccines in persons with PD were observed to be no different than in the general population – pain and irritation at the injection site, fatigue, muscle pain, headache, low fever/chills.
• The vaccines were observed to be safe for older adults, however caution is needed for the specific subgroup of very frail and terminally ill elderly persons with PD living in long-term care facilities; or for people with PD who have additional chronic illnesses.
• Taken together, (Bloem et al., 2021) recommend COVID-19 vaccination with approved vaccines for persons with PD, unless there is a specific contraindication.

A note about the review – The authors did not examine the US FDA approved vaccine produced by Johnson & Johnson so persons with Parkinson’s and family members should not extrapolate the data from this recent study to apply to the new single dose vaccine.

Parkinson’s Disease remains degenerative and incurable but if you keep up with the research on the disease (an impossible task) you know there are a lot of reasons for hope.  Every day is a different and new battle.  Pushing yourself as much as you can remains the best way to fight it.  I am most thankful to still be running almost 9 years after my diagnosis.