Happy Birthday To Me

Today is my birthday; I turn 58 today. It will be a nice day, spent with my Mom and Step-Father, my daughter, her husband and my granddaughter. We are headed for breakfast shortly and then I hope we will spend time just visiting chatting and enjoying each others company,. It will be a nice day. My hope is for a happy birthday.

Last November the doctors said I had 36 months to live. They said I should quit my job and do what I wanted to do while I still had the mobility, while I could still walk, breathe, eat, and enjoy myself. They knew what was coming. Then they sent me home and wished me luck. Certainly there was follow up at the ALS clinic. That follow-up was more evaluation and testing to see how quickly I would decline.

So far I have declined at exactly the expected rate. So far I have lost one point a month.  My score of 38 when diagnosed has declined to a score of 30 at the beginning of this month. Based on this rate of decline I will die sometime shortly after my sixtieth birthday. That is the way this disease works.

There is hope that my rate of decline will slow. My doctors, and I have many of them these days, suggest that my upper body is strong and that even though I am losing diaphragm strength and am starting to have trouble swallowing, that my upper body strength might keep me going longer than expected.

The question is more about quality of life, not duration. I could live a very long time if I were to be fed through a tube and ventilated through a respirator. I could live a long time, immobile, trapped in a wheelchair, talking through a machine, dependent on care, wearing diapers and plugged into a catheter. I could live a life where my mind was all that worked. The question is whether or not I want that life.

Today I am 58. Today I am going to spend time with family. Today I am mobile, at least partly mobile. Today I am alive. That is what I will celebrate today.