There are some people who love roller coaster rides and others who get nauseous just thinking about them. I am in the latter group. So when I first started experiencing neurological issues, like problems walking, poor vision and hands trembling, I got that same sickening feeling of being on a roller coaster and desperately wanting to get off the crazy scary ride.
Unfortunately, that was just the beginning of my ups and downs learning to navigate living with Parkinson’s.
Parkinson’s is a disorder of the nervous system that primarily affects bodily movement due to impairment or death of nerve cells in the brain. The loss of these neurons causes abnormal brain activity that affects one’s control of muscle movement and is most diagnosed in older individuals like myself.
I first went to see my primary care physician about tremors in my hands just after turning fifty. After working for several hours, my tremors were so bad that I looked like an addict who needed their next fix. Fortunately, my tremors were mild for the most part so I could hide them while at work. When anyone did notice, I blamed my shakiness on too much caffeine that day.
Initially, my primary care doctor diagnosed the problem as “an essential tremor.” In the back of my mind, I was certain it was more serious. My doctor assured me that it was not but sent me to a neurologist just to be sure.
Seven long years later, after multiple doctor visits, MRI’s, and missing my niece’s wedding due to my mobility and memory loss, my worst fear was confirmed, I had Parkinson’s Disorder (PD). In later stages, some people with the disorder may develop cognitive problems, including memory loss and dementia.
The COVID-19 pandemic severely disrupted medical care, preventing me from consulting a neurologist for more than a year. During this prolonged period, my cognitive and physical functions deteriorated, significantly impacting my job performance, not to mention my personal life.
After what seemed like an eternity, I finally saw a new neurologist. She had thoroughly reviewed my medical records before my appointment and after a comprehensive physical exam and series of neurological tests, she prescribed a low dose of Senimet, commonly used to treat Parkinson’s patients.
About a week or so later, I started to see and feel the difference in my body. The relentless and annoying tremors greatly subsided, and the fog in my brain began to lift. With each passing day, I felt more like my old self. Finally, I saw a light at the end of the tunnel, and felt hopeful that my PD symptoms could be managed.
Armed with my diagnosis and treatment plan, including taking my meds four times a day, drinking plenty of water, exercising, and getting plenty of sleep. I still had to face the reality that there is no cure for Parkinson’s. It is only a matter of time until my mobility and cognitive skills would worsen.
As a single, independent and strong-willed woman, I was the queen of taking care of myself. Growing up, my parents were emotionally and physically absent so I learned to fend for myself before I was 10. Asking for help was not in my vocabulary and I knew eventually I would need a caregiver.
At the end of my appointment with my neurologist, she recommended that I “get my affairs in order” before the disease took away my autonomy. I’m sure this was great advice. However, I wasn’t ready to fully accept my new reality and that my life was about to change, whether I was ready or not.
People with Parkinson’s disease can live for years or even decades with this condition. According to my doctor, there is no definitive way to predict how quickly or slowly the disease will progress. The timeline varies greatly from person to person.
It has been 3 years since my diagnosis and for the most part I am following doctor’s orders. I have found an amazing gym which is specifically dedicated to helping those living with PD increase strength, flexibility, balance and cognitive abilities.
I am no longer able to hold down a full-time job, yet I am continuing to work occasionally on select projects. I am also learning to ask for help on those days when I cannot rely on my body and brain to function properly.
If I had advice for anyone going through a major medical life transition, I would say: stay as positive as you can, look for humor in the situation, and never ever be afraid to ask for help. It’s possible to live a great life. You just have to learn to trust that the roller coaster ride stops at least once a day.
For more information about living with Parkinson’s, listen to our podcast.
Author: Candace Schoner