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Hugh is an accomplished personal trainer

The Fitness Negotiation (My Life with Ankylosing Spondylitis)

This content was originally posted on Hugh’s personal blog in November 2016 and is re-used with his permission. Source:

“Your tests suggest that you have ankylosing spondylitis, and you have probably had it for many years.”

Last January, I sat numbly, listening to my rheumatologist explain my new diagnosis and possible treatment options. This type of inflammatory arthritis is usually genetic, and manifests itself through constant pain in the sacral region accompanied by a slow deterioration of the sacroiliac joints, a loss of the lumbar spinal curve offset by an increase in the curve in the thoracic spine, possible inflammation in the foot, ankle, and shoulder areas (a condition known as “enthesitis”), and the gradual fusion of the vertebrae and the costal joints, a condition known as “bamboo spine.” For those who are not familiar with ankylosing spondylitis, the famous television host Ed Sullivan suffered from this autoimmune disease.

My rheumatologist suggested that I share my diagnosis with my spouse as soon as possible. With a heavy heart, I walked back home. I wondered if the doctor had made a mistake; the diagnosis could not be true. Only two years had passed since I married my spouse, and I felt as if I was not honouring my part of the marital agreement, as if I was letting my spouse down. I had been a professional dancer for decades, and I was a personal trainer. In spite of the pain that I have experienced most of my adult life, I asked myself, “How could I have this disease?”

Fitness is not a medical diagnosis based on the absence of disease or the presence of youth. Nor is it a state of physical strength. All social, mental, emotional, and spiritual factors considered, fitness is simply a direction. It is a negotiation that continues throughout a person’s life.

During the coming weeks as I fought back depression, I returned to the idea that I have been suffering from ankylosing for many years and, without this diagnosis hanging like Damocles’ sword, I continued to have a long and successful career. When acute pain occurred, I found a way to compromise the mechanics of my activity. When stiffness became overwhelming in the morning, I slowed down and gradually lulled my body back into a reasonable range of motion. With a wealth of knowledge divined from years as a professional dancer, I understood my body well enough to negotiate movement so as to avoid pain. So, although the ankylosing diagnosis was new, living with inflammatory arthritis was not.

“Whatever you have been doing for the last few decades, it seems to have been working for you,” the rheumatologist said on my next visit. “Just keep doing it!”

“I work out with weights,” I explained. “I have had to compromise over the years, but I love it.”

Learning to negotiate begins by listening to the feedback the body provides. The peripheral body sends a constant stream of nuanced signals to the central nervous system. These signals have no intrinsic morality; they are not good or bad. They are simply messages that provide us with information to help us choose the most beneficial activity, and to selectively move our muscles during that activity. If we choose our activities wisely, and learn to move efficiently and unencumbered, we develop a mastery over our body. In essence, we develop a movement wisdom that, in turn, allows us to negotiate diverse situations.

“I work out with weights,” I explained. “I have had to compromise over the years, but I love it.”

Weeks after my initial visits with my rheumatologist, the new physiologist pronounced, “Because you have ankylosing, you have to stop working out with weights. Resistance bands and water exercises are more appropriate for people with your type of arthritis”

“Bullshit!” I thought. But, out of courtesy, I censored my response to a simple, “Resistance training has been working for me over the years. Look at me! I’m 61 years old.”

“You have to give up your bodybuilding,” she responded. “Weights put too much strain on the joints,” she argued. “Squats, for example, are simply out of the question.”

My reply was direct. “I stopped doing squats a while ago because I felt the strain on my lumbar spine. I now do different exercises for the same muscle groups, with lighter weights and more repetitions.”

The physiologist emphasized her pronouncement by telling me that personal trainers did not have enough understanding to deal with inflammatory arthritis, knowing that I am, in fact, a personal trainer.

When I choose an exercise for myself, I assess the risk by asking:
  1. Does the exercise put too much strain or compression on the lumbar spine and the sacroiliac joints?
  2. Is there a safer way to work the muscles in question?
  3. Do I favor heavier weights, or do I lighten the weights and do more repetitions?
  4. At what speed do I execute the exercise?
  5. How can I ensure the stability in my pelvis and shoulder region during the exercise?
  6. In building muscle, do I ever allow myself to compromise stability in favor of mobility?
  7. Is there any valid research regarding potential dangers of the exercise for those with inflammatory arthritis?

At Denman Fitness, Nov. 11, 2016.

As I go to the gym, I see peers who continue to execute exercises in the same manner they did when they were younger. Or they follow workouts in magazines designed for men half their age, working through pain as if that was a requirement of resistance training. Many of these same men approach me and ask how I stay in shape. My answer is always the same: “I am consistent in my workouts; I do not make excuses for myself; and I work within my physical limitations.”

Remaining fit throughout life is negotiation. And successful negotiation depends on making wise and honest choices about what we can and cannot do. A person who is 65 years old who has made wise choices in negotiating life moment to moment is not the same physical age as another 65 year old who has shirked all responsibility for negotiations.

I am not fit because I have special genetics. In fact, I could strongly argue otherwise. Nor am I fit because fitness comes easy for me. It does not! I am fit because I negotiate every moment of my waking life, from the moment I arise from bed until the moment I fall asleep. At the gym, I listen to my body, and work within my physical limits. I choose to be fit, in spite of medical challenges that appear. Movement is life, to me.

This week I visited my rheumatologist again, and I told him about my experience with the physiologist.

His response was concise, tinged with humour. “Next time, tell the physiologist that your training has been working well for you over the years because you have a great personal trainer.”

I thanked him for the compliment.

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