As muscle weakness progresses, people give different answers
In this age of obsession about body image, when someone asks me if I want a piece of strawberry pie for dessert, I’m apt to decline. “No thanks. I need to maintain my girlish figure.”
My playful reply is designed to conceal the fact that I’m actually assessing my ability, as a 40-pound skinny mini with spinal muscular atrophy type 2 (SMA2), to eat the pie.
Do I have the strength to cut the berries and the crust? Will I have the oomph it takes to raise my fork to my mouth? Will I have the musculature to chew and swallow the dessert? Simply feeding myself and eating has become an exercise workout for me.
It is an awkward predicament to be in when everyone around me seems to be consumed with tight abs, low-carb diets and intense activities like spinning or step aerobics. I’ve never really had the strength or stamina for any significant exercise. Instead, I try to preserve as much of my strength as possible, call on assistance when necessary and realize that plenty of others with neuromuscular disease are dealing with similar challenges regarding loss.
People’s degree of mobility and their past experiences significantly impact how they feel about exercise. Some choose not to work out. Others remain motivated and find ways to modify their routines to accommodate their weakness.
The following perspectives about exercise from people with neuromuscular disease may help you decide the extent of workout activity that fits your lifestyle.
Time to stop
Sue Charlip, 48, of St. Petersburg, Fla., received a diagnosis of myasthenia gravis (MG) in January 1997. She describes how the progression of the disease has gradually decreased her motivation for exercise, because continual exertion causes her extreme physical weakness and fatigue.
“I was a big walker. I used to walk in the neighborhood, walk the mall,” Charlip recalls. “I just walked and never gave it much thought until MG hit and walking became difficult.”
She says she enjoyed the exercise because it was easy. It didn’t take any special talent or equipment. Plus, walking didn’t aggravate her asthma.
Repetitive motion exhausts her now, so Charlip uses a motorized scooter when she needs to cover long distances or avoid standing for long periods of time.
“I just try to accept my limitations,” she concludes. “I was sick for two years, at least, before I got diagnosed; so in one way, I’m glad to know what is wrong with me and know how to take care of myself. It’s just frustrating, depressing and sad that I had to give up the little bit of physical activity I was able to do and enjoyed.”
Tina Baughman, 49, of Pacific Palisades, Calif., says living with adult-onset limb-girdle muscular dystrophy (LGMD) has completely taken away her desire to exercise. The reasons are multiple: “I can’t stand up off the floor. I don’t see any positive results. I would prefer to spend my time doing other things.”
In her younger years, Baughman found it rewarding and fun pumping weights, developing her muscle strength, playing sports and working against her own personal best. Her experience is different now. “There’s no adrenalin rush. It’s like asking a competitive downhill snow skier to be happy spending time walking through the snow … for me, that’s not going to happen.”
With assistance, Baughman has successfully managed such adventure activities as tandem skydiving, High Sierra backpacking on horseback, indoor rock climbing and flying a single-engine aircraft. These opportunities help her hold onto the thrill of moving, and make it a little easier to listen when others share their excitement and interest about fitness.
Even so, she admits, “There is a tinge of jealousy, longing and sense of loss when I hear about people doing things that are beyond my physical abilities.”
Greg Halamicek, 59, of Lancaster, Calif., knows he needs to keep exercising to maintain his weight and body function, as his type 1 Charcot-Marie-Tooth disease progresses. He has modified his workouts and made swimming the primary focus of his routine, using an indoor pool near his home three or four times a week.
The limited extent to which he is able to exercise, Halamicek says, gives him a “huge pick-me-up” both emotionally and physically.
Joey Wells, 21, of Shadow Hills, Calif., became motivated to exercise two years ago after a hospital stay depleted his strength. Wells has myotubular myopathy and uses a power wheelchair. His workout routine includes arm cycling, stretching, stepping, kicking and weight training.
Wells explains, “When I was younger, I had more strength to do what I needed. So, I could get away without exercising. Now I need to exercise regularly to keep what strength I have.”
Nikki Young, 34, of Clarksville, Md., finds fitness and healthy living empowering as she struggles to deal with facioscapulohumeral muscular dystrophy. Through exercise, diet and physical therapy, she’s lost more than 56 pounds and regained some independence. She advises, “I know that even with a neuromuscular disease, we can have positive influences on our bodies and keep them stronger.”
Tyler Roope, 11, of Burbank, Calif., received a diagnosis of SMA2 at 18 months old. Although he doesn’t always like to take time for stretching exercises, physical education is his favorite class in school.
Says Tyler, “I like baseball best. I want to manage the Cincinnati Reds someday. When we play, my friends hit for me and I run the bases in my chair. I like to play kickball at school in P.E. I pick someone to kick for me and I run the bases. When I am in the field, if the ball hits me, it’s an out.”
Of mind and muscles
For some who are very competitive or who deeply feel the psychological insult of neuromuscular disease, losing the ability to exercise can be hard to bear, says Carl Tishler, a clinical psychologist and professor at Ohio State University.
But, he says, there are other ways of “staying in shape” when moving the body is no longer feasible.
Exercising the mind can “strengthen the psyche and thus help the individual feel at ease,” explains Tishler. As possibilities, he suggests learning a new language, solving crossword puzzles, playing computer games, following the stock market, reading or volunteering.
For those who have some degree of remaining mobility, Tishler urges: Make the most of the capability you do have. It might not help your muscles, but it might help your mind.
“Any exercise — no matter how brief or with little stress (weight) — will improve the psyche of the individual with MD.”
Bethany Broadwell is a freelance writer based in Traverse City, Mich. Her strength is wrestling with words.