Out of the Closet on Parkinson’s

I was first diagnosed with Parkinson’s disease in October 2018. My family and close friends have long known of my condition. But I have been reluctant to discuss Parkinson’s on my blog. I was concerned that potential consulting clients and board recruiters might be less willing to use my services if they knew I had a condition that could limit my mobility and potentially impair my cognitive abilities.

Parkinson’s disease is a progressive nervous system disorder that affects movement. Symptoms start gradually, sometimes starting with a barely noticeable tremor in just one hand. Tremors are common, but the disorder also commonly causes stiffness or slowing of movement.

Mayo Clinic

As Parkinson’s disease progresses patients may experience impaired posture and balance, their speech may become slurred and it may impact their cognitive abilities. There is no cure for Parkinson’s. Medication can control symptoms but are not able to slow the progression of the disease. Exercise to improve flexibility, balance, strength and speech appear to slow disease progression.

In Parkinson’s disease, certain nerve cells (neurons) in the brain gradually break down or die. Many of the symptoms are due to a loss of neurons that produce a chemical messenger in your brain called dopamine. When dopamine levels decrease, it causes abnormal brain activity, leading to impaired movement and other symptoms of Parkinson’s disease.

Mayo Clinic

Parkinson’s disease is very difficult to diagnose because symptoms develop slowly and are different for different individuals. For example, I have been formally diagnosed for about three and a half years but have never developed a tremor in a limb, which is widely seen as a key characteristic of Parkinson’s. For more than two-years before my Parkinson’s was diagnosed I was assessed and treated for back pain by my primary care doctor, an excellent Hopkins’ trained physician, an orthopedic surgeon and a chiropractor for stiffness in my back. None of these professionals recognized that I had Parkinson’s, even though the orthopedist and chiropractor specialize in back and muscle treatment and my primary care doctor has observe me for more than 10 years.

My first Parkinson’s diagnosis came at my 50th high school reunion when a former classmate, Mitchell Clionsky, PhD and his wife Dr. Emily Clionsky immediately saw my posture and gate as telltale signs of Parkinson’s. http://www.cns-neuro.com/DrClionsky.html. Emily wanted to write me a script for carbidopa/ levodopa on the spot so I could better enjoy my highschool reunion weekend. But I elected to wait and see my personal physician when I returned home. He found the diagnosis credible, referred me to a general neurologist who confirmed the diagnosis, provided a basic initial drug regimen and referred me to a motor disease specialist.

In the three and a half years since my Parkinson’s diagnosis my motor disease specialist (Dr. Stephen Reich) has prescribed and adapted a medication regimen that keeps my symptoms well under control most of the time, using four different medications at present. I have used a physical therapist and a speech therapist, both with lots of experience with Parkinson’s patients, and I have joined the Rock Steady Boxing Program. Rock Steady is specifically designed for Parkinson’s patients and offered without charge in Maryland by the Maryland Alliance for Parkinson’s Support (MAPS). I also took a battery of cognitions tests shortly after my formal diagnosis, at Mitch’s recommendation, so my care givers and I would have a base line from wish to measure changes in cognition as my disease progresses.

During a typical week I do three or four hour-long boxing/intense cardio workouts, an hour of yoga, and walk 1 -2 miles or play 9 holes of golf one or two times per week, weather permitting. Since beginning my exercise regimen I have lost 0ver 30 pounds, dropped six inches from my waist and am much stronger and more fit than I have been in many years. The boxing program, in particular, and associated Parkinson’s targeted exercise has improved my posture and my balance and is important for keeping my Parkinson’s symptoms under control. We continued boxing on line during COVID and course are now split two days per week in the gym and two on line. We are in temporary gym space now but hope to have improve long term gym space later this year.

My symptoms are largely unchanged since I have been diagnosed. But, as anyone with Parkinson’s knows, can occasionally flare up between medication dosages or if you eat something (usually protein) that interferes with your medication being absorbed or experience some stress that may aggravate your symptoms. After living with your illness and working with your motor disease specialist, you can develop tools to manage these situations.

Next – Building A Parkinson’s Care Team

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