About a month ago, I was diagnosed with ALS, a rarer form called Bulbar ALS. It attacks the face, throat and neck areas before the limbs. How fast it progresses is unknown as it is different between each individual.
I delayed informing the community and friends as we had ‘celebrations of life’ for my brother in law John and my former ski team manager, Ed Champagne as well as Nancy’s recent birthday.
Presently, I am not suffering and other than my weak voice and deteriorating speech, I am fine. Swallowing is restricted a little but still OK. I will be meeting with some specialists over the next few weeks, and I am hopeful that they will outline what to expect next in the coming months. Obviously, the long-term outlook is not good. Over the next few months, I will work with council and municipal staff to make sure that there will be a smooth transition as I will have to step down as Mayor.
I can accept my fate as I truly have lived a wonderful life and at 82, one is close to reaching the end. Enjoyed a wonderful winter skiing this year, 130+ days and no signs of weakness while skiing. Hope to enjoy some tennis this summer.
However, I am having difficulty with emotional control in face to face discussions. It’s caused by the ALS and is called emotional lability. I want to be out and about in the community and I only have one request. Please no sad facial expressions or sympathy wishes, it is those gestures that will triggers my emotions. Let’s just have some normal day to day discussions, pleased to hear your community thoughts and even your complaints but no expressions of sympathy. Thanks!!
Happy to receive your emails.
Sorry to be the bearer of bad news.
Al