| Emotional challenges Dr. Julie Fieschko, MD, of the Lebanon Veteran’s Administration Medical Center, (LVAMC) Lebanon, PA, looked me square in the face and said: “We think you have a Neuro-Muscular disease known as Glycogen Storage Disease Type V often called McArdle’s Syndrome.” Much to my surprise I was actually relieved to know the medical profession had finally come up with a name for the mysterious disease process that was eating away at my body day after day. However, no one could have ever prepared me for the emotional challenges McArdle’s Syndrome brought to my life. The stress of dealing with this disease and managing a full time career has taught me much about patience, forbearance and humility. The many physical limitations of McArdle’s Syndrome has taught me to cry out to God in prayer – earnestly asking Him to give me strength, wisdom and direction when the things I wish I could do with all my heart have to remain undone. Adjusting to new limitations is now an almost daily occurrence for me. Some of my toughest adjustments have been: Parking in handicapped spaces. Getting a handicap-parking permit. Relying on others to move heavy things like boxes etc. Trying to explain to others why I simply can’t do it. Walking like nothing's wrong with me one day only to wake up the next day and find I’m barely able to walk at all. Taking a lot of medicine to the point I sometimes even smell like a pill. Dealing with the deep and sometimes totally unmanageable pain that occurs from time to time. Endless trips to the hospital for treatment, tests and evaluations. Trips by ambulance to the emergency room because the pain is out of control. The incredible financial burden this disease has brought upon my family. Battling the many internal physical problems this disease has a way of makes a whole lot worse. Picking up a stomach virus from coworkers, family or friends and suffering with it 3 or 4 months until you can bring it under control. Catching a cold and having it hang on for 2 to 3 months before it goes away. Telling your coworkers, family and friends you’re now driving a battery powered scooter. Eating something you like only to find out it is now going to make you sick as a dog. Wearing a nasal cannula and carrying a tank of oxygen wherever I go. Unable to travel or stay out of town over night because I simple get too tired from the journey. Need to cancel my plans because I’m simply too exhausted to go. Going to dinner and unable to eat most of the food I ordered. Having to accept the fact some people just don’t understand. Dealing with people who don’t know I have a neuro-muscular disease called McArdle’s Syndrome. Telling people I have McArdle’s Syndrome only to have them act as if it’s not true. However the most difficult thing I’ve had to adjust to surely must be: Watching my wife make major changes to her dreams, plans and life goals to lovingly care for me every day of her life. My greatest blessings My Lord and savior, Jesus Christ, who has comforted me and kept me through it all. My wonderful, faithful and Godly wife, Donna. My brother and sister. My family, nieces, nephews, aunts, uncles, brothers and sisters-in laws and my wonderful father-in-law. My church. My neighbors, coworkers, friends and acquaintances. The many medical professionals responsible for my care. Contacting Me I will gladly try and answer any questions you might have on McArdle’s Syndrome. My only guidelines are that your questions remain within the bounds of common decency. I am not a doctor or a counselor. If you need specific help or medical advice, please contact a medical professional. |
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