This is my short story of recovering from FSH Muscular Dystrophy. In 1983 I ran my first marathon in Honolulu, Hawaii. In August 1984, my running speeds were not increasing. During training runs my left leg didn’t seem to be as strong as my right leg. I was diagnosed with FSH Muscular Dystrophy at age 36. Now at age 58 I may be the first person to be recovering after losing 75+% of my body muscles.
I continued running and took up doing triathlons. In 1988, I completed a half Ironman triathlon in over 9 hours. This was 1.2 miles swimming in Saguaro Lake, 56 miles biking in Fountain Hills, AZ and 13.1 miles jogging. In 1990, I completed the El Tour de Tucson, a 100 mile bike ride. I was the last cyclist in a time over 10 or 11 hours.
Between 1990 and 1995 my muscles declined in strength. By 1996 I would fall down occasionally while walking.
There were occasions when I was sitting on the floor that I could not get up unless I had furniture around me to pull myself up.
Along the way I was introduced to a scientific nutrition approach based on the research of several dedicated professionals. I am very grateful for their efforts. My hair, blood, and urine were tested for nutrient information in order to balance 11 nutrient categories that included: Water, Carbohydrates, Protein, Fats/Oils, Fiber, Food Enzymes, Probiotics, Vitamins, Minerals, Antioxidants, and Phytochemicals.
Whole foods and whole food supplements in Nature’s form were chosen.
It is very significant that I am improving my muscles at all because in 2000 the Muscular Dystrophy Association clinic measured that I have a short chromosome four. It is only 28 units long instead of being greater than 42. This genetic mutation has been found to be related to approximately 90% of the FSH muscular dystrophy cases.
Many people with FSH MD need a wheelchair to get around. Dr. Sivakumar, who I had met at the MDA clinic, has documented my progress in written reports.
I have gotten strong enough to walk the Phoenix 10K in the past two years. At age 58, I am improving at a steady pace so I expect to run again in the future.
My blood test of creatine kinase, which indicates muscle deterioration, has dropped to the normal range. This means my muscles are repairing.
There is a personal and emotional experience related to the ups and downs of rebuilding most of my body. At times I became emotional when muscles that didn’t work became alive again. I am very blessed to have this experience and I plan to share the body rebuilding process with others.
My overall health improved significantly as measured by blood tests. Cholesterol was in the 220-350 range and now is 166. Liver enzymes (ALT & AST) were elevated and now are in the 20’s. C-Reactive Protein was 5 and now is 0.4 (below 1 is low cardiac risk).
During 2005 and 2006 my body made some interesting changes. It became easier to raise my arms above my head and to comb my hair. Lower back muscles seemed to be getting stronger, which made it easier going from sitting to standing. My legs began to change daily. It seems that I have to learn to control the leg muscle changes. It seems that I have made it past the low point and my legs seems to be improving. I have learned to expect these up and down and up changes.
In summary, the muscles maybe sharing the nutrients to gradually improve all of the muscles. The body appears to improve one area and then move the nutrients to another area and move them back again. For example: I had lost most of my upper body muscles that include pectoral, diaphragm, arms, and back. In 2000 a sleep study showed that I wasn't breathing deep enough and my blood oxygen level was dropping to 86% when it should be above 90%. My legs were gradually losing strength and I began walking with a cane in November 2006. As time went on it became clear that the body was repairing my upper body and letting my legs get weaker. Then as the upper body was getting stronger, the legs started to improve. There are times now that I can walk from the parking lot to my apartment carrying my cane. I am glad the body thinks my breathing muscles are more important than my legs.
Feeling my body change everyday is a wonderful experience. After I eat I can feel what body parts are being repaired. I have a special appreciation for how incredible the body can be when it is fed with quality food and nutrients in a balanced way.
In the short term there are ups and downs but in the long term there is a gradual overall improvement. It appears I am getting better and the improvements are starting to accelerate. The next twelve months promises to be an exciting time that may confirm that I am getting to the critical muscle mass, which may allow my athletic performance to start to improve. I look forward to walking and to running again. Of course I am mentally ready to complete the Phoenix 10K and the Senior Olympic 1500 meter racewalk. Then onto triathlons again. What an accomplishment that would be at age 61.
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Written by Joseph Wozniak. Joe founded Measured Nutrition, LLC in 2002. He provides personalized science-based nutrition programs with nutrition education, nutrition consulting, nutrition testing services and nutrition products. The nutrition programs are for clients who desire optimal health, improved health, body fat reduction, increased muscle mass, or top athletic performance. You may contact Joe at 623-206-1958 or email: joe@MeasuredNutrition.com .
Updated: 5/1/2009