As of 2008, the only realistic treatment for McArdle’s Disease is – somewhat ironically – exercise.
The physical (and emotional) discomfort associated with failure episodes characteristic of McArdle’s Disease often pushes people with the disease towards a sedentary life style. If you consume sugary snacks or beverages as a way to try to up your blood sugar to power through episodes, you probably have it worse because the body ultimately outsmarts itself and interprets those snacks as “break time” and shuts your energy-creating enzymes down essentially, making you even more tired (this is not pseudo-science, but it IS an idiosyncratic characterization…there’s a difference.)
The reason sedentary people with McArdle’s Disease have so much discomfort exercising is the same reason any normal sedentary person does. Their body has adjusted to just sitting around, and not having demands placed on it. When you get up and push your body beyond the limits of what it is chemically prepared and equipped to do, you will feel initial resistance. This is the same for all people, regardless of whether or not they have McArdle’s….only, with those of us who have the disease, this threshold is reached much quicker.
The way to effectively manage the disease is with diligence and patience and caution and perseverance. There is in fact plenty of empirical data supporting the notion of a “second wind” phenomenon that people with McArdle’s disease experience following very careful, low-impact periods of warm-up exercise such as walking on reasonably flat ground for sustained periods of time. Such folks are by no means “over” the symptoms, but they are able to walk almost indefinitely without experiencing failure symptoms. It is in this “golden” period, following the warm up, that individuals with McArdle’s Disease are enjoying the normal benefits of exercise.
The secondary benefit of this is that, to some degree, their large muscle groups are now behaving somewhat like a normal person’s. Blood circulation increases, the heart rate is up, and energy metabolism is occuring at a fast enough rate to sustain some physical activity. It is in this “golden” period that an individual with McArdle’s disease MAY, depending upon their physical state of conditioning, be able to:
- Play sand volleyball or moderately-paced basketball or soccer
- Perform outdoor labor
- Ride a bike up moderate or short inclines
- Hike up and down reasonably large hills without failure
- Swim (safely)
- Paddle a canoe or kayak
- Possibly even jog
It all depends on the individual. Just like every other physical trait like hair (straight, or curly?), skin color (light or dark?), or height, how your body metabolizes energy and oxygen and how it reacts chemically to exercise is really inherently genetic and different from person to person. So, know your limits, but by all means to carefully and diligently push your limits because this is how anyone – McArdle’s Disease or not – makes gains.
Keeping your body healthy is a little trickier with McArdle’s Disease, but the patience you are forced to employ in order to get exercise is something you will benefit from. That’s more or less universal for all people with and without the disease.
Best of luck!