Can I trade this body in for a newer, more efficient model?

Over the last ten years, the disease has also taken its toll on my face and throat muscles ... those muscles controlled by the bulbar region of the brain. Initially, I started choking while I was sleeping. In the middle of the night, I woke up gasping for air and could not clear my air passageway ... a condition called ‘dry drowning’ or Laryngospasm. Talk about something frightening for my wife and myself. Fortunately, knowing the symptoms and not panicking goes a long way in helping to wait-out the spasm. It is never easy to not try to gasp for air when you believe you are suffocating, but that is the worst thing you can do. With training, you learn to relax (not panic), tilt your head backwards, and try to breathe in slowly. Another way it was explained was that if you cannot catch your breath, you will pass out. Once you pass out, your throat muscles relax (the spasm is over) and you will begin to breathe normally. Fortunately, I have never had to test the last method to see if it works.

A few years later I found it more difficult to swallow certain foods. If I am not continually thinking about chewing food well and swallowing, the food can become lodged in my throat. If I had only listened to my mother when she told me to never talk with my mouth full, this practice would be a lot easier.

Also, in recent years my jaw muscles have weakened to a point where they cannot always hold the lower jaw in place. If I eat a bagel, for example, the pressure caused by chewing on something hard forces the lower jaw to pop out of joint. The initial pain is bearable, but for a day or two I have to eat with my hand pushing on the lower jaw to keep it in the socket. Occasionally during the night the lower jaw will just fall out of its socket. Meanwhile, the facial muscles continue to weaken and collapse.

Over the years, I have fell dozens of times. Almost all of my falls in the earlier years were forward as if I stumbled. Fortunately, only a couple of those falls results in a serious injury. About six years ago, however, I was stepping into the house from the garage when my knees collapsed and I fell backwards. I cracked my head on the concrete floor and went out like a light. I suffered a concussion and had some bleeding on the brain. Fortunately, the only long-term damage was the partial loss of my sense of smell.

Then two years ago, my left knee buckled twice in three months. Both times I went straight down with all my weight collapsing on the left knee joint and lower leg. The first fall fractured the left fibula and ankle. Within a few weeks of receiving a clean bill of health, my left knee buckled again. This time the left fibula and tibia, the weight-bearing bone, were fractured. The doctor told me I could not place any weight on my left leg for three months. For a person with normal leg strength, the healing process would be difficult. For someone with Kennedy’s Disease, whose leg strength is not half of what it should be, the three months of inactivity was an eternity. I have never had a worse experience. Not only was it difficult for me, it was even more difficult for my wife. She had to be there for me all day every day. The only time I could leave the house during that time was in a para-transit vehicle specifically designed for a wheelchair. During one of my several doctor visits, he showed me the x-ray of my left leg and foot. My bones looked like Swiss cheese. He said I had severe osteoporosis and another fall could crush the bones. I made the decision that day to begin using a wheelchair as my main mode of transportation. It was a difficult decision, but I could not put my wife through another six months of hell like this again.

Pain ... what can anyone really say about pain? What is pain to one person is only an ache to another. I had to learn early on to live with the aches and pains associated with the disease. When I was in my twenties and thirties, I experienced severe muscle cramps in both legs. Many nights I woke up with a painful cramp and had to massage the muscle until the pain subsided. In the forties, the severe cramping miraculously disappeared. However, it was replaced with deep muscle aches. This usually happened when I exceeded my physical limitations for the day. At the same time, I begin to experience extreme fatigue. It often took a day or two to recover from most strenuous activities. I am learning to live with muscle aches and occasional minor cramping. It is almost as if I can feel the muscles dying. Fortunately, I must have inherited my father’s tolerance for pain because I can normally live with the nagging aches and pains. Occasionally, when the pain is too intense and I cannot sleep, I have to take an Ibuprofen.

Along with the aches and pain, my body now reacts negatively to cold temperatures. Anytime the temperature is below 50 degrees, I begin to lose the use of my hands. Sometimes even gloves do not help. My legs and feet are also constantly cold and do not always function properly. I wear insulated underwear, thermal socks, and gloves from November through March. Occasionally, I have to wear gloves in the house just so my hands can function better. I have also lost most of the feeling in my feet and some of the feeling in my hands. I do not always notice hot and cold or cuts and scrapes right away. I have burned my fingers several times and didn’t even know it until I saw the blisters.

Are bodies that are no longer efficient included in the ‘cash for clunkers’ program?