ALS

Last evening’s ER was quite an emotional ride. James Woods portrayed a patient who had ALS. He had reached the stage where his facial muscles and throat had gotten so paralyzed he could no longer swallow so he had a feeding tube inserted. I drew a little analogy with Dad. He had forgotten to swallow.

The character was also admitted with pneumonia. That was the death knell for Dad. He could not get over the pneumonia. At least there was no mention of putting him on a respirator, whereas there was that decision made on James Wood’s character. For that I am grateful.

These situations brought raw emotions flooding back. The gut wrenching decisions that have to be made by those who love the patient. The agreements and disagreements. But after I could separate Dad from this, I thought about out friend/relative J who is suffering with ALS now.

J is such a great man. He was an educator, a principal, an administrator, and finally an author. He and his wife V retired to little hill country area a couple of years ago. He was active working cattle, as well as the activities of the area. I so clearly remember him coming over to out place one morning to look for a lost bull. He was seemingly in top condition.
All that was to change about two years ago. He had a sensation in his left hand and arm. He went to the doctor, and came back with the diagnosis of ALS. Things went well for a while. Not many people knew he had the disease. We had contacted J about leasing our land to him and his then partner E for cattle. He said that his son was now in charge of the cattle business. We didn’t think much about it.

About a year later, he had published an editorial in the little local paper stating he did have ALS. He too, like James Wood’s character, is waiting and hoping for stem cell research. I’m afraid he, like so many others, will die before there is any cure coming for this disease. J’s left arm is unusable, and the right is being effected. I try to stay away from controversial and political themes here, but this is terrible. Stem cells do not have to come from aborted embryos. Stem cells could be a saving grace for so many diseases like ALS, Alzheimers, Parkinson’s. I have seen too many close to me die of these diseases.

These diseases are horrible. In ALS and Parkinson’s, the brain remains alert. The patient is aware of what’s going on. They can’t control their bodies. Think about that. What a prison. Eventually ALS patients suffocate. This is a horrible way to die. In a way Alzheimers is easier for the patient, but all of these deteriorating diseases are sheer hell for the family.
I worry about the decisions V and her family are facing in the future. I pray they will be given the strength to make wise decisions,. and more over, the strength to believe they made the correct decision. They are in for a really tough time.