I am 30 and I have been living with SELENON-Related Myopathy my whole life. This rare form of muscular dystrophy has affected me in many ways. I use a breathing ventilator every day as needed and when I sleep. I experience limited mobility, muscle pains and weakness, occasional dizziness, and fatigue. I also have scoliosis and kyphosis which causes severe neck pain, muscle spasms, and migraines. The newest problem is digestive issues that cause nausea and fatigue.
At this point, after 13 years of going undiagnosed and untreated, my body has taken quite a beating. My diagnoses cause a range of symptoms that vary in severity. Sometimes these symptoms are easy to treat and sometimes they take days to go away. Over the years, symptoms have become chronic so medication is necessary. There are occasional side effects to that, too.
I grew up feeling weak and became tired easily, could never run, or participate in sports. I felt like an outsider, so I never tried and wasn’t interested in fitness. It wasn’t until I was diagnosed and knew how Congenital Muscular Dystrophy affects me that I strived to move my body in ways that work for me. Attending physical and occupational therapy has also helped guide me into accommodating my body. I put my body through trial and error figuring out what works best. I’m glad to have figured out what movements help, how to adapt, and what to avoid.
Here are the 10 **tips I’ve learned:
More emphasis on staying hydrated and nourished before and after a workout. On days I've planned to work out, I will drink electrolytes for added energy and to help recover. Notice how your digestion works. After I've eaten, I wait two hours to exercise which works best for me with my slow digestion. Consult your doctor about adding supplements to help recovery! L-glutamine has helped my muscle recovery.
Your whole body is the instrument. Replicate standing moves with a seated position using your head, neck, arms, or legs. As someone with muscular dystrophy, I am very aware of how many muscles there are and how much effort it takes to move. Every move counts! Incorporating neck movements, hands, arms, etc., when too tired to stand goes a long way. I love dancing and become winded easily, so I’ll sit down and keep dancing by moving my head and arms. Dancing while seated is just as fun!
Prioritize what activities are important to you. Don’t think you have to do things the same way you’ve always done them. I love to walk but sometimes my legs are too fatigued, so walking back and forth in a pool is great. If I'm short of breath, I'll use my ventilator while I work out. The key is to not push yourself to do these activities how others do them but to do what works for you.
Pace yourself. Spread slow and fast-paced movements. My endurance changes based on my symptoms, so I'm not focused on fast-paced workouts. I prefer maximum effort (which changes day-to-day) in a short period where I'll recover better than fast-paced workouts.
Limiting above-the-head movements because it raises heart rate and exerts more energy. Minimize arm movement, especially above shoulder level. Keep elbows low and close to your body. Most people will have an arm workout day or leg day, and I implement that into my routine as well. I save arm workouts for their own day. Whenever I work out, I limit how often I'm raising my arms because I tire out faster.
Use adaptive equipment when needed. Use objects (chairs) to help with balance. Sit whenever necessary/possible. If I'm feeling weak, I'll do squats above the couch. Having seating behind me assures that I won't fall and still complete my exercise.
Avoid/limit bending, reaching, and twisting. Some conditions and surgeries will make you adapt to certain movements. My spinal fusion, twisting, and bending caused my back to hurt easily. We’re all familiar with being our best doctor, so I've researched what stretches are safe and helpful for me to do before and after workouts!
Proper body alignment balances muscles and decreases stress. Keep your back straight. A stooped posture makes breathing more difficult. Personally, leaning forward or too far back triggers my breathing difficulty and neck pain. During a workout, I'll catch myself losing my comfortable body alignment, so I'll take a pause and correct myself so that I don't cause myself more stress.
Pursed lip breathing. I catch myself breathing with my chest rather than my diaphragm, which does not help. Focusing on whether my stomach expands rather than my chest helps correct my breathing. Pursed lip breathing is very calming! This also works when I'm on my ventilator — it’ll just slow down my breathing.
Don’t wait until you’re tired to stop and rest! That “no pain, no gain” quote does not apply! My muscles will break down faster rather than grow. I still fail at times to not overdo it, but I now know the signs to slow down or stop what I'm doing before I end up paying for it.
*This is solely personal experience. Always consult a medical doctor before implementing any new regimens into your routine.