Someone asked me why I use a power wheelchair when I have the ability to walk? Why don’t I force myself to walk? Why have I given up?
"Please do not judge me until you live a day in my life and understand the disabling and cruel medical condition I endure daily.
If I use them, I risk heart arrhythmia and many may cause a life-threatening arrhythmia called long QT heartbeat, which can kill me. I also risk going into paralysis. For me, these paralytic episodes can be full body lasting hours or days and are accompanied by the same dangerous heart arrhythmia; I am unable to open my eyes, speak or move in any way; and I experience heart rate fluctuation; blood pressure fluctuation; choking; breathing difficulties. Cardiac arrest and/or respiratory arrest can also accompany the episodes.
So, do I have the ability to walk??? Yes, I have the ability to walk. Should I walk??? No!!! I should not walk farther than to the next room with assistance. I am saving my life by using my power wheelchair!!! I am avoiding possible injury, serious paralysis and possible death.
Using a power wheelchair is important in other ways. If I am weak and in and out of paralytic episodes and or in an abortive attack (extreme muscle weakness and fatigue) and if I am in my wheelchair, I have an easier time of getting around and my husband has an easier time of helping me and moving me from place to place. He can control the chair and does not have to lift me (he is also disabled). The chair has a recline option due to the fact that even sitting up straight proves to be too much exertion for me and causes the symptoms mentioned above. If I slip into paralysis, he uses it to recline me further, as needed. I have a headrest, which keeps my head and neck straight. When in paralysis, my neck muscles go totally flaccid and my head will fall to the side causing great pain.
Can I walk? Yes! Should I walk? No! Is a power wheelchair the best option for me? Yes. Why do I use a wheelchair when I have the ability to walk? Although I can walk, I do not because I have permanent muscle weakness in my skeletal muscles and breathing muscles and walking and breathing are difficult for me and because I am avoiding possible injury, serious paralysis and possible death.