Managing Parkinson’s Disease Is a Full-time Job
“Dealing with a diagnosis of Parkinson’s is not easy and there is no one, single technique that will ease the pain and no magic pill that will miraculously enable you to cope with it.” — John Baxter
Parkinson’s treatment is a lifelong commitment that involves much more than just taking a pill.
When I was first diagnosed in 2015, I naively thought that all I would have to do is take Sinemet (carbidopa/levodopa) to make me feel better. Over time, and as my disease progressed, I realized that no one-size-fits-all remedy exists to resolve all of my symptoms. A combination of therapies, exercise, medications, and supplements is required.
As my naturopathic doctor says, Parkinson’s is like a boat with many holes that need multiple plugs to fill them. Because Parkinson’s has so many potential symptoms, plugging each of the boat’s holes can be like an unsalaried full-time job, plus overtime.
Although I can think of better activities to do in retirement, I am thankful that I no longer work so that I can devote my time to improving my quality of life.
And people wonder what I do with all of my time now that I am retired!
Multiple medical professionals have told me I have to invest less than 30 minutes of my day to see improvement in a particular symptom. However, if we multiply those 30 minutes by the various symptoms, the hours in the day start to disappear quickly.
Physical therapy sessions for balance and core strengthening, which are important to prevent falls, must be scheduled. Occupational therapy, such as picking marbles out of rice, helps to improve my fine motor skills. Speech therapy, such as the Lee Silverman Voice Treatment, or LSVT, is needed to help improve my slurred speech and voice projection.
Plus, there is no shortage of homework to do for these therapies. Exercises involving swallowing, balance, and other fine motor skills must be performed daily. Additionally, there is sniff training using essential oils to improve my failing sense of smell. Then there are handwriting exercises to improve my illegible writing.
It’s essential for people with Parkinson’s to keep moving, so I also incorporate regular fitness training into my week, such as walking, cardio machine workouts, and weight workouts.
Attendance at Parkinson’s support group sessions is critical for socialization.
And I plan to add meditation for my mental health.
Medications mainly address the movement disorders that are characteristic of this disease, such as bradykinesia, tremors, and dystonia. I take carbidopa/levodopa four times a day and apply a Neupro (rotigotine) patch daily. I also take selegiline twice a day because some studies have shown it potentially can slow disease progression.
I also take Nourianz (istradefylline), which is used to improve the efficacy of carbidopa/levodopa by reducing and shortening the off periods a patient may experience. I never thought I would see the day when I take one medication to help another medication work better.
I take multiple supplements recommended by my naturopath doctor, including vitamin D, fish oil, CoQ10, and glutathione. Based on her research, my naturopath doctor has found that people with Parkinson’s typically are on the low end of the nutrients that these supplements address.
I can’t be certain whether these supplements are helping my symptoms and slowing progression. Therefore, I will continue to take them in case I might feel worse without them.
Wait, there’s more
On some days, I’ll spend many hours online, researching the latest and greatest “cures” and remedies. I also spend a lot of time online looking for products that improve quality of life, such as satin pajamas and bedsheets to ease the difficulty of rolling over in bed, or the best pen to help improve my handwriting.
Other Parkinson’s symptoms that don’t affect me, or that affect me only slightly, such as incontinence, cognitive loss, sleep issues, and depression, have their own individual “plugs,” or remedies.
Fatigue and apathy are two of my most debilitating symptoms. Finding a feasible way to plug these holes in the Parkinson’s boat can at times be an exercise in futility. It is a vicious circle: I need to move and exercise to feel better, yet fatigue and apathy put up constant roadblocks.
Before my Parkinson’s diagnosis, I chose to exercise five to seven days per week because I enjoyed it. Now, it is such a struggle to get motivated to exercise, attend my therapy sessions, and complete my therapy homework. Sometimes, I just want to go back to bed.
However, although I am the captain of my ship, I will not go down with it!
I just have to keep bailing so that I don’t sink!
“I often think I can’t do this anymore but then I realize what choice do I have?” — Justin Blaney
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.