Five years ago, my wife and I were sitting with my neurologist hearing feedback after an hour of tests. I remember my neurologist saying, “You have idiopathic Parkinson’s disease.” My brain sort of slipped out of gear for a few moments. I tuned back in for “no cure at this time.”

I checked out again for a few minutes while I reviewed my will, my life insurance policies, and the negative changes pending in my life plan. I asked about medications and remember hearing “current medications may alleviate your symptoms but will not stop the progression.” The next thing I heard was, “You are unlikely to die from Parkinson’s but it can and will negatively affect your quality of life.” Finally, I heard, “Exercise is the only proven activity to halt or even reverse progression.” 

Confession time: I’ve dabbled in exercise many times. I was a competitive swimmer in my teens and a mediocre runner in my thirties. In my forties and fifties, I had a series of very stressful jobs and exercise was one of the first casualties. Since then, I’ve failed at every exercise I’ve tried, and I’ve tried many. I just don’t like exercise, especially organized exercise. I was a confirmed couch potato for at least five years before my diagnosis.

How could I have a disease where exercise is the only hope? And was I the only one who hates exercise? As it turns out, no. Although the benefits of exercise have been widely publicized and disseminated in the Parkinson’s community, many people with the disease have difficulty starting or maintaining a physical exercise program.  Among the obstacles are:

• Classes aren’t specific to Parkinson’s. Almost all exercise programs for the general population do not accommodate Parkinson’s symptoms. Slowness, referred to as bradykinesia, for example, makes keeping up with group exercise difficult. My balance problems bar me from many classes.
• Some classes can't accommodate walkers and wheelchairs. Most Parkinson’s exercise programs are designed only for people who are mobile and are not deemed suitable for those with balance problems or those who use canes, walkers, or wheelchairs. I use hiking poles to prevent falls.
• Exercising can be embarrassing. Many people with Parkinson’s are embarrassed about their symptoms being seen by others. Tremors, slowness, frozen face, poor balance, and drooling head the list. It’s hard to catch a ball if your hands are in your pockets to hide tremors.
• Lack of success is unmotivating. It’s hard to get excited about exercise if your prior experience has been less than successful. Before I was diagnosed, I either couldn’t keep up or would become bored after a few sessions. In addition, many people with Parkinson’s feel isolated, apathetic, and depressed. I often feel like doing nothing and do not want to be out in public.
• It’s too hard. General exercise, especially classes, are perceived as too competitive, too fast, and starting at too high a level. A major part in my not exercising is that I am too competitive, which makes exercise difficult for me.
• I don’t see progress. Starting from a couch potato position, the path to exercise is frequently too slow or too difficult. The lag in perceived positive feedback for symptoms such as slowness makes success even more difficult and, perhaps, impossible to achieve. My poor posture and shuffling gait make progress very slow.
• It’s expensive. Exercise programs range from free to pricey. I have to consider the cost and weigh it against my medical and prescription costs. In addition to Parkinson’s, I have four other conditions with various degrees of seriousness. Prescription copayments often eat up any available cash in a given month.

For 10 weeks, I defended my reasons for not exercising. Then two factors came together to push me off the couch. My neurologist warned me that my quality of life was at risk, and my wife saw an ad for a new form of Parkinson’s-specific exercise classes and issued an ultimatum.

Ten weeks later, I found myself standing outside the door of the University of Colorado at Colorado Springs’ (UCCS) Center for Active Living (CAL) Parkinson’s exercise class.

I was a doubting Thomas if ever there was one. But something wonderful happened when I walked through that door. I found seven other people with a wide range of symptoms united in the belief they were not going to let Parkinson’s beat them or define them. I felt enveloped in an atmosphere of humor and warmth where having fun was paramount. That was a novelty to me. I’d never considered exercise fun.

After that first class, which was lively and engaging, challenging but not too challenging, and infinitely modifiable, I became a convert—and not just for the day. I’ve been a regular twice-a-week participant for the past five years.

I’d avoided exercise most of my adult life, so what is so special about this class? Let me explain a few of the reasons.

• Customized exercises. The exercises are tailored to cover a range of ability, from highly mobile to wheelchair bound. This allows each participant to perform the same exercise at individual levels of difficulty. I, for one, have not had a smooth path. Over the years, I’ve worn a surgical boot, had knee replacement surgery, and used a walker. With each setback, my instructors were able to adapt the exercises for me.
• Variety and challenge. After a while, most exercise programs become boring or repetitive to me. Or I find them too difficult. The CAL program counters these pitfalls in two ways. The instructors use a variety of exercises to obtain the same results, and they provide expert guidance, correction, encouragement, and a safe environment. When I feel safe, I’m encouraged to try exercises that expand my capabilities.
• Interns. CAL enlists interns from UCCS other major programs such as Health and Wellness Promotion, Gerontology, Biology, Community Health Nursing, and Strength and Conditioning to assist in the classes. To a person, the interns provide physical and emotional support and challenge me to attempt exercises I might not try on my own. This has increased my confidence and given me the opportunity to interact with a younger generation.
• Social interaction. For the first time in years, I’ve made new friends, and I don’t want to let them down. It’s another motivating factor.
• A sense of accomplishment. Within one year, I could press 400 pounds on a leg press machine, compared to 180 pounds a year earlier. My posture and gait improved. And my risk of falling was reduced. My balance is still a work in progress, and I may never be able to walk and chew gum at the same time, but at least I’m walking. Some of my Parkinson’s symptoms (tremors, posture, and gait) have regressed. Looking back over the past four years, my physical condition continues to improve.

I exercise because I must, but the camaraderie, humor, and friendships I’ve experienced make it possible—and dare I say—fun.

What’s the best exercise program for a person with Parkinson’s? For me, the answer is easy: one you can do. I encourage you to explore options in your community to find something you enjoy and look forward to both physically and emotionally.

Phil Horton was diagnosed with Parkinson’s disease in 2014. He lives in Colorado Springs with his wife, Judy, where he is an advocate for people with Parkinson’s. He also loves to write and camp.