Dave, Cindy (one of our caregivers) and I recently attended our quarterly ALS Clinic Visit on October 10th. The doctors and therapists poked and prodded to see how I was doing, while Cindy and Dave provided their observations and ideas. Cindy's were very helpful, but Dave's were mostly ignored by everyone. The long and short of the visit was that yes, my left arm and hand are getting much weaker, and I am having more frequent chocking incidents. Dr. Libby, my pulmonolgist, suggested that I no longer try to eat anything because of the chocking problems, but Dave responded by asking who was he kidding. He said yes he knew I would continue to sample the things I wanted to eat, but he felt compelled to give the advice anyway.
The Clinic Staff gets together after each four hour visit and summarizes their findings and recommendations, which are put into a letter sent to us the following week. At the suggestion of a fellow patient at the ALS Support Group, we have started forwarding that letter to family and some friends so that they would have an idea of what is going on with me. Most of the time it is too much trouble to try and explain to everyone time after time how I feel. It gets a little tedious and can be depressing. So we thought this would be a way to keep people informed. If you did not receive the letter by email but would like to, please let us know and we will put you on "the list".
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