I'm a member of a club that nobody wants to join. The Living with ALS Club.
When my wife and I received the news that I had ALS just over three years ago, we went into a state of depression and shock. We cried in private not wanting to tell anyone, not even our children. Our lives were NOT suppose to play out this way. We were expecting to grow old together, just like our parents and grandparents. And what about our two children? I want to tell you that the past three years have been horrible for my children. The good Lord knows how I have unwillingly subjected my dear children to witness the slow deterioration of my body. The first year we tried our best to keep a positive attitude. My wife went totally organic with food and vitamins trying to slow down this monster inside of me as well as rid me of toxins. I went to alternative healers for the same reason. At that time I could still walk and talk, but by the second year I couldn't walk. I had to step down from management at FedEx and then ALS forced me to quit my job and go on disability. No more playing sports or going fishing with my children. By the third year I couldn't talk or use my arms. Now I cannot cheer or clap at my daughter's basketball games because this disease took away my voice and hands. I can only smile. I cannot attend any of my son's Boy Scout campouts. He has his sights set on making the rank of Eagle, just like I did. I don't know if I will live that long to see him earn it. I have become a bystander instead of an active parent. I was told all my life that I would make a good father. I loved raising our children with my wife because we agreed on almost everything when it comes to parenthood. We're so darn proud of our children. They both have excellent study habits and are self motivated. Both are Honor Roll students.
I came from a family that hugged and kissed. Not just on special occasions, but all the time. Now it takes so much energy to take care of me, there is no time for affection. I overheard my daughter say "Do I have to?" when she was asked to give me a hug. I don't let it get to me, she always speaks her mind. I was forced to turn over all my husband and father duties to my wife and teenage son. Such as the management of money, automobiles, yard work and cooking. The saddest part is knowing that as my children grow into adults, their memories will fade and they will NOT remember the love that I gave them and the absolute joy of raising them to be the best that they could be. I also think that they will forget many of the adventures (fishing, camping, swimming etc.) that we had. Instead they will remember their Dad in a wheelchair and a hospital bed unable to communicate except with a talking machine.
When my wife and I received the news that I had ALS just over three years ago, we went into a state of depression and shock. We cried in private not wanting to tell anyone, not even our children. Our lives were NOT suppose to play out this way. We were expecting to grow old together, just like our parents and grandparents. And what about our two children? I want to tell you that the past three years have been horrible for my children. The good Lord knows how I have unwillingly subjected my dear children to witness the slow deterioration of my body. The first year we tried our best to keep a positive attitude. My wife went totally organic with food and vitamins trying to slow down this monster inside of me as well as rid me of toxins. I went to alternative healers for the same reason. At that time I could still walk and talk, but by the second year I couldn't walk. I had to step down from management at FedEx and then ALS forced me to quit my job and go on disability. No more playing sports or going fishing with my children. By the third year I couldn't talk or use my arms. Now I cannot cheer or clap at my daughter's basketball games because this disease took away my voice and hands. I can only smile. I cannot attend any of my son's Boy Scout campouts. He has his sights set on making the rank of Eagle, just like I did. I don't know if I will live that long to see him earn it. I have become a bystander instead of an active parent. I was told all my life that I would make a good father. I loved raising our children with my wife because we agreed on almost everything when it comes to parenthood. We're so darn proud of our children. They both have excellent study habits and are self motivated. Both are Honor Roll students.
I came from a family that hugged and kissed. Not just on special occasions, but all the time. Now it takes so much energy to take care of me, there is no time for affection. I overheard my daughter say "Do I have to?" when she was asked to give me a hug. I don't let it get to me, she always speaks her mind. I was forced to turn over all my husband and father duties to my wife and teenage son. Such as the management of money, automobiles, yard work and cooking. The saddest part is knowing that as my children grow into adults, their memories will fade and they will NOT remember the love that I gave them and the absolute joy of raising them to be the best that they could be. I also think that they will forget many of the adventures (fishing, camping, swimming etc.) that we had. Instead they will remember their Dad in a wheelchair and a hospital bed unable to communicate except with a talking machine.
Probably the most significant aspect of my disease is the fact that my wife has become my caregiver. After my wife took care of her dad who died of lung cancer a few years ago, I became ill. She said to me in private that she didn't know if she could go through taking care of another terminal diseased person. Well it's been three years and she is totally burned out. I try not to be a burden but the daily care of me is getting more difficult. Soon I will be totally paralyzed. I thank God that my wife has such a large family. her mother and five brothers and sisters, that live close by. Plus my family visits from Colorado when they can. My mother is visiting right now. I know my wife appreciates the extra hands and moral support.
Everyday I sit and wonder what I should have done in my life to prevent this horrific disease? If I could turn back time, what would I do different? My extremely compassionate neurologist doctor and the ALS Association taught us how to have hope. I definitely know that there is a treatment and possibility a cure on the horizon. I just hope that when it is discovered, I will be able to take advantage of it.
Everyday I sit and wonder what I should have done in my life to prevent this horrific disease? If I could turn back time, what would I do different? My extremely compassionate neurologist doctor and the ALS Association taught us how to have hope. I definitely know that there is a treatment and possibility a cure on the horizon. I just hope that when it is discovered, I will be able to take advantage of it.
So I'm asking for you to give us PALS and our caregivers some multi-media visibility desperately needed to help researchers find a treatment or cure for ALS. As well as the establishment of the National ALS Registry.
Sincerely,
Don Taylor (Don from Tennessee)
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