| My greatest challenge Beyond the physical limitations of McArdle’s Syndrome (GSD Type V) this disease has not caused noticeable deformities of my arms and legs. The absence of physical deformities has to be one of my greatest blessings. However the lack of physical deformities has also presented me with some very unique challenges. Many people look at me and believe I am the poster child for good health and wellness. Strong “looking” muscular and well fed. However, when I drive through the neighborhood on my Rascal Scooter with an oxygen nasal cannula strapped to my face, I can sense many people wondering what in the world is going on. The connection between appearance and wellness doesn’t allow most people to readily accept the fact I have a serious Neuro-Muscular disease called McArdle’s Syndrome. Telling people I have McArdle’s Syndrome usually only adds to the problem. I’m sure more than a few people have thought it’s all in his head and McArdle’s Syndrome has no basis in reality. Unlike so many other debilitating diseases the rarity of McArdle’s Syndrome makes the disease and its pathology virtually unknown to most people worldwide. Therefore, being able to develop a clear frame of reference regarding the physical symptoms of McArdle’s Syndrome is not possible for most people. Trying to educate people has met with only limited success. After many frustrating months of trying to help people understand McArdle’s Syndrome I declared my efforts to be a failed lesson in futility. Recently, a much better approach has emerged. I now understand it will take most people a considerable amount of time to become comfortable with knowing someone who has McArdle’s Syndrome. Therefore, I no longer try and educate people about this disease. Instead, I now find it much less stressful to just simply wait until they feel comfortable enough to ask me their questions. I then answer their questions honestly and try to help them become familiar with one small aspect of this disease at a time. To learn more about living with an "Invisible Disease" I encourage you to read this wonderful article. http://www.myida.org/seeing.htm A battery powered miracle Walking more than a few hundred feet has become very difficult for me. Standing for more than a few minutes at a time brings the onset of intense soreness, pain and cramping in my legs, back, neck shoulders and arms accompanied by a feeling of exhaustion. The pain, soreness and exhaustion increase in intensity until I’m able to sit down and rest. Whenever I’m unable to rest the intensity of my pain, cramping and exhaustion worsens to the point I must refrain from walks for several weeks until I completely recover. In May 2002 I was outfitted with a battery powered, 3 wheel, Rascal Scooter. The scooter has made me much more mobile and allowed me to go places and do things I had no longer thought were possible. Physical Weakness One of the more surprising aspects of McArdle’s Syndrome has to be the onset of many physical limitations. Opening a jar lid, ripping open a cardboard box, pulling the rope on a lawnmower, carrying a few bags of groceries, lifting a carton of soda, operating a chain saw, digging a hole with a shovel, moving heavy items, lifting bulky things etc. Doing simple maintenance chores around the house. Ie. Repairing a clogged drain, drilling a hole, pulling wire, painting a wall, vacuuming a rug, washing a floor, moving the refrigerator, etc. All of these things are now physically challenging for me. In years gone by I’d think nothing of grabbing a shovel to help my neighbor dig a hole in his back yard. Today, however, everything physical comes with a price. Now I must constantly ask myself: If I try this what will it do to me? How much pain and agony will this put me through? If I start this project will I be able to finish it? Will I get hurt? What happens if I find out I can’t do it? Who is around to help me if I get hurt? The question often isn’t can I do this because the answer usually is – yes I can. The more important question I must ask myself now is – what price will I have to pay? What will happen to me in 5 or 10 minutes? How will I feel in an hour, several hours, tomorrow etc.? Often the adverse physical consequences of trying far out weigh any benefit I might gain. So the end result is – many things I would like to do I must now leave undone. It has taught me to be patient and grateful for everyone who helps me. |
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