Author: Larry Ladd
My wife, Karen, and I (mostly Karen) try to keep the local Movement Disorders support group running. Our story is not unusual, but it is unique. In PD (Parkinson’s disease) circles, we say when you’ve met one Parkinson’s patient, you’ve met one Parkinson’s patient: each person with Parkinson’s (PWP) is different.
I carry two cards in my wallet. One reads, “I am not intoxicated, I have Parkinson’s disease.” I may stumble, fall or stagger at times, but I am not intoxicated. The other card explains that I am in a study at Washington University in St. Louis where, upon my death, my brain will be harvested for further study. I may play a small part in advancing our growing understanding of Parkinson’s disease.
Before I was diagnosed with Parkinson’s disease, all I knew about it I learned from a Mr. Whalin who attended First Presbyterian Church. I have forgotten how I learned of his diagnosis, but when I met him, he was having difficulty walking. We often entered or exited the church at about the same time. I was happy to hold the door for him. He was slow and deliberate in moving. He tended to walk with his back bowed and his head down. As time passed, he moved from using a cane to using a walker. His spirit seemed indomitable. When we met on the parking lot, he sang out, “Good morning, Larry,” as he shuffled along behind his walker. He declined offers to help him up the stairs, but he always seemed happy to see me. Then, he became a shut-in.
In the Presbyterian church, communion is only served when both clergy and laity are represented. The pastor and I visited the Whalin home one Sunday afternoon to share the elements and pray. Mr. Whalin sat in his easy chair. His voice was soft and he seemed weaker than I remembered. When unoccupied, his right hand shook. Mr. Whalin died before I saw him again. He left an indelible impression on me.
Fourteen years later, I was diagnosed with PD.
A friend had suggested I get a checkup after observing a few things: that my way of walking had changed, my right foot shook when I was seated and my handwriting was getting smaller. My family doctor referred me to a neurologist. While waiting for my appointment to roll around on the calendar, I did a little research.
The first thing I discovered was that I needed a bigger dictionary and a lot of patience. I was in a new world of words: L-dopa, dopamine, on-off phenomenon, serotonin, pallidotomy, neurotransmitter … thus began my tendency toward hypochondria. Every new symptom I read about made me think I had it, had had it or would have it.
I recognized Mr. Whalin’s and my symptoms. In 1994, the medical profession used five major areas to establish a diagnosis of PD: slowness of movement, rigidity or stiffness, gait or balance, tremor at rest and small handwriting. Currently, the first four areas are the indicators used for PD diagnosis. I decided not to tell Karen about my hunch that I had PD until the neurologist had confirmed or discredited it. During the time between appointments, a few tests were ordered: a panel of X-rays of my brain from about two dozen angles and a sonogram of my carotid arteries. The idea was to rule out other diseases or symptom clusters that might be confused with PD. There is no single test for PD.
Driving home from my first visit to the neurologist office, I thought of my wife and family. I prayed. My faith led me to think of scriptures that said I should give thanks in all circumstances, give thanks for all things and pray continuously. I also thought of the man who said, “I believe; help me in my unbelief.” I prayed, “Lord, I am thankful for this turn of events; help me be thankful for it.” In February 1994, the doctor confirmed his initial diagnosis. I became a person with Parkinson’s (PWP).
My wife and I gave ourselves time to process and accept this conclusion before deciding who to tell when. Since my symptoms were not creating any functional problems with my activities, we decided to carry on as usual, sharing only with our family, close friends and my employer. I told my sons that PD was not thought to be genetically transmitted. (Since then, some forms of PD have been found to have a genetic component accounting for about five percent of newly diagnosed PWP.) I notified my employer and indicated that I might require some adaptations in the future. Shortly after we began to share my diagnosis, I visited a friend. Before I finished my little speech, I was interrupted with, “You have PD. I know.” I was irritated and amused at how quickly the information had traveled. I intended to tell another friend, but when I tried, I just couldn’t. I did not want to be pitied or filed away in a “damaged goods box.” That afternoon, our friend called Karen and asked, “What’s wrong with Larry?”
What’s Wrong with Larry?
Well, I have a complex chemical/electrical nervous system with my brain floating in an ever-changing alphabet soup of neurotransmitters, inhibitors, amino acids and such that may go out of whack on a daily (hourly) basis. This system is sensitive to changes and reactive to chemical compounds used to control the tremor, slowness, stiffness, problems with balance, and the regulation of smoothly coordinated movements. Parkinson’s disease (PD) was called “shaking palsy” by Dr. James Parkinson in 1817. Very little progress was made toward finding effective treatments until the 1950s and ‘60s when research resulted in the development of the breakthrough drug “Sinemet,” the gold standard of PD treatment ever since.
The major drawback with Sinemet was the on-off effect: a sudden and variable change in motor and non-motor performance. This is why the PWP often appears not to have anything wrong with them when the medication is working. During the “off” phase, the symptoms return.
After 10 to 15 years with PD, my doctor offered us a parking placard for handicapped spaces. I did not want it. Karen was instrumental in my accepting it. I finally realized I could no longer walk very far. We use the placard at church. I presume the parishioner who asked me, “Are you handicapped?” when I walked in unassisted didn’t know there were a cane and a walker in the van in case I turned “off” during the service. I initially felt guarded, but I realized the parishioner simply didn’t know the hallmarks of PD.
In the 23 years since my diagnosis, research has brought about changes in treatment, but there is still no cure. PD is a progressive, degenerative, incurable disease of the brain. PD will not kill me, but it will continue to take greater amounts of my time, energy, motor skills, strength and endurance. Michael J. Fox has said Parkinson’s disease is the “gift that keeps on taking.” It may attack any muscle in my body and PD shows itself in many ways: small cramped handwriting, lack of facial expression, soft voice, swallowing difficulty, drooling, shuffling gait, muffled or stuttered speech, depression, anxiety, skin changes, fatigue, sleep problems, restless leg syndrome, sexual dysfunction, falls, muscle cramps, diminished sense of taste or smell and more. PWP may have double vision, blurred vision, difficulty driving at night, and perceptual errors. It may take longer for the eyes to adjust to motion — such as trying to glance at and read a road marker while driving at speed.
Some of these signs and symptoms may come and go; some may come to stay. I may have developed some hypochondriacal self-judgements, but I have experienced many of these behaviors and more. PD patients may also react to their treatment (placebo effect, side effects of medication, allergies and other). These behaviors are not confined to the PWP home, but may occur at any time and under any circumstance.
PD does not care if you are embarrassed. When the level of available dopamine is excessive, I may begin to move in unusual ways. I may twist my body, or pace, or get out of my chair, or wiggle because I have the feeling that insects are crawling beneath my skin. My wife and I volunteered to be “loaner grandparents” for children at a day camp. My tremor was on a rampage. I tried to control it while I helped a little girl finish an art project. Several times she looked over her shoulder at me as I shifted my weight from foot to foot, did a little dance step and shook a bit. She finally turned to face me and asked in her best ‘teacher voice,’ “Do you need to go to the restroom?”
Balancing, walking and falling are never far from the front of my mind. My wife and I had gone to a Ken Bradbury production at the Abraham Lincoln Museum. My medication was overdue when intermission came. Karen had stopped to talk to a friend. As I started to make my way through the crowd, I could feel my legs growing weaker and beginning to quiver. I was facing dim lighting, plus a large number of people and stairs between the water cooler and me. I missed the edge of a stair and went down. Before I hit the floor, I heard Ken say, “There goes Larry!” Embarrassment is seldom mentioned as a complication of PD.