Dancing Away Disability Part 3

Parkinson's Disease—The Nightmare of Losing Control

By Irene Marie Kuch Watson

In 2006, while I was still struggling to save my life from increasingly dangerous recurring and nonresolving pneumonias, and before the worst of those pneumonias had yet to hit, I learned that I was about to face a challenge from yet another corner. It was, in fact, a challenge that would escalate into an extraordinary test of my ability to cope and my will to survive.

My husband Rick, who is otherwise healthy, was diagnosed with PD about 10 years ago, when he was 67. While attending a 6-week class in Arizona’s Power Over Parkinson’s program, 1 with him in 2006 I began to suspect that I too had the disease. Having both Cystic Fibrosis and Parkinson’s Disease is quite unusual since people with CF usually die early and Parkinson’s doesn’t usually occur until late in life. Yet in 2006, four years before my nonclassic CF diagnosis at National Jewish Health, my suspicions were confirmed and I was diagnosed with PD as well.

Parkinson's Disease is a devastating disorder. Millions around the world and their families suffer each day from the disease’s harmful effects. Its debilitating symptoms rob its victims of their ability to control their own movement.

PD is a progressive neurodegenerative disorder that results from the death of vital brain cells (neurons) that produce dopamine, a chemical involved in the control of movement and coordination. Dopamine neurons in our brain’s basal ganglia are responsible for the damping effect on motor signals, preventing the contractions of muscles throughout the body from becoming jerky.People with PD typically experience some combination of tremor (shaking in the hand, arm or leg), rigid joint action, slowness of movement, loss of postural reflexes (automatic movements to maintain balance, posture and fluid movement), a forward-flexed (stooped) posture, freezing (of movement), a shuffling gait, poor vision, trouble swallowing, increasingly small and illegible handwriting, dementia, drooling and many other symptoms. Although PD itself is not fatal, it increases the risk of dying from PD-related complications, such as falls, choking, or pneumonia.2,3

The root causes of PD remain largely a mystery. There is increasing evidence that Parkinson's disease may be inherited (passed on genetically from family members). However, there is considerable controversy surrounding the possibility of a genetic cause. It is known that certain medications can cause Parkinson's disease-like symptoms and these causes must be ruled out before a diagnosis is given. There is also some evidence that certain toxins in the environment may cause PD. The currently suspected risk factors include having a head injury or a history of depression, living in a rural area, drinking well water, being a farmer, rancher, fisher or welder or being frequently exposed to solvents or pesticides.4  Rick and I both have more than one of these risk factors. Rick, as a young man, owned and operated a sports car repair shop where he frequently had his bare hands in toxic solvents. Rick and I both lived in rural areas and drank well water for many years. I grew up on a farm and worked with crops treated with pesticides. Perhaps these exposures are what led to PD later in our lives.   

There is no outright cure for PD, but neuroscience research and my own personal experience have shown that the disease’s forward march can be slowed or stalled and many of its symptoms even reversed through an ongoing program of exercise and medication, especially if these are begun early in the course of the disease. 5

Symptoms of PD vary from person to person, as does the rate of progress of the disease, but the progressive loss of control can be depressing, even terrifying. Actor and PD research advocate Michael J. Fox, with his inspirationally positive attitude despite living with PD for 20 years, is a role model for all of us. In the October 2013 issue of Good Housekeeping magazine he described how it feels to him to attempt a coordinated act like hitting a golf ball, “Its like I have a foot on each platform of two subway cars and they are moving independently and I’m trying to hit the ball.” PD, like many of life’s serious challenges, tests our ability to maintain equilibrium (physically, mentally and emotionally) despite our destabilizing circumstances. “Maintaining a positive attitude is very important. In fact, a positive outlook is the most important predictor of resilience.” 6

Rick and me in 2011, our backs stooped from Parkinson's Disease

My PD began with a loss of my sense of smell, a subtle right side resting tremor and a little jerkiness and slowness of movement. Over time PD increasingly impaired my balance (requiring me to hold on to something stabilizing when I walked) and my fine motor skills (making it hard to close the clasp on a necklace I’d hoped to wear or to write a note). It also brought pain to my tremoring right leg where I wore a heavy-duty knee brace to compensate for the accidental loss of my ACL (anterior cruciate ligament) and medial meniscus (cartilage band). The accident happened in 1974 and I had had a surgical repair in 1979. The repair worked well until 1995 when the interior of the knee collapsed and just walking brought painful contact between the femur of my thigh and the tibia of my lower leg. That’s when I got the brace. The PD tremor, however, brought  a troublesome ache to both that knee and the ankle below. Over time PD stooped my back,which  interfered with my already compromised ability to breath. Getting a good night's sleep is an ongoing problem because I need to sleep nearly upright to prevent refluxing acid from my stomach from being aspirated into my lungs, a very dangerous situation.Yet, the most distressing effect of my PD is that occasionally while I am trying to swallow food, I encounter episodes of intense esophageal spasm, choking, and regurgitation of food are painful, frightening and can be fatal.

Rick didn’t have much tremor, but his back became stooped and he struggled with low muffled speech and a shuffling gait. Stuttering, a problem he experienced in his youth, returned and worsened. He would also freeze up and not be able to get started moving if starting to move meant having to turn, such as turning to leave a narrow closet after standing there looking for the right shirt. We learned that both exercise and music were useful to combat PD. Prior to our beginning our ballroom dance lessons two and one half years ago, Rick learned to carry a metronome in his pocket, since its ticking would trigger something in his brain to get him back out of his closet and other tight places.

Finding a medication for PD without side effects that are worse than the disease itself is not an unusual challenge, especially since side effects vary from person to person and PD medications are drugs that affect the brain. I experienced nausea and headaches and hallucinations that, over time, became quite frightening. At first I saw statues come to life and people who weren’t there. They looked real, but I knew they weren’t. However when night terrors caused me to huddle screaming in a dark corner because I believed the furniture was attacking me, it was time to try another medication. Rick’s hallucinations were fairly benign and somewhat humorous, as he would occasionally see “the little people” milling around and chatting among themselves.

Dopamine agonists, a class of PD medications, sometimes have the troubling side effect of causing Impulse Control Disorders, such as compulsive eating, gambling, shopping or sexual urges. 7 I developed an irresistible compulsion to sit at the computer hour after hour, day after day, shopping for and bidding on auctions of Flapper and Edwardian attire. Wining auctions felt like winning a lottery and when the clothing arrived, I put the items on, posed, and took photos of myself. I eventually learned it was a fantasy world driven by my prescription drugs and that fortunately backed way off when I changed my medications. But until then I didn't want the bubble broken, even though the expense and lack of storage space was becoming increasingly problematic.

But before I realized the drug connection, my compulsions turned dark and nearly lethal. While driving, I started hearing a very strong and insistent voice in my head urging me to drive head-on into an oncoming car. I began repeatedly screaming NO! to the voice in my head and I forced myself to hug the white line on the right side of the road. But I wasn't sure I could overcome the voice's power over me. It was truly terrifying. I gave up driving and feared I was losing my mind. Finally I overcame my instinct to hide these humiliating impulses and I revealed them to my physician. That's when I discovered I was not the only one with such experiences and that there were medication changes we could explore.

Eventually, through a long process of trying different formulations, I found drugs that were more helpful than harmful and so did Rick. Interestingly, the drugs that worked for me were problematic for Rick and vice versa.

One of the most wonderful and truly serendipitous outcomes of Rick’s and my move to Tucson Arizona from 2005 to 2010 is that we met and became the research subjects of Becky Farley, the neuroscientist who figured out how to use exercise to recover from Parkinson’s Disease.

(The story is continued in Part 4, Exercise That Promotes Recovery. See Part 7 for all references.)

© 2014 Irene Marie Kuch Watson