Unfortunately, though not unexpectedly, Dr. Pulley at Jacksonville Shands today confirmed my ALS diagnosis. I have known for some time this was coming, but as everyone knows, the actual confirmation is nothing less than shocking. My poor wife and daughter had held out hope, and as much as I had tried to prepare them, they were understandably inconsolable. The toughest day of my life, and theirs. This is a big gross bag of sh—.
When I last posted after my exam with Pulley on April 25th, he had not made the call until he saw me again for evidence of progression. At that time he noted slight clinical weakness in my right arm and left thumb, and today noted progression of weakness in those areas as well as slight ankle weakness as well, in addition to atrophy of my shoulder muscles and the muscles in my left hand. Perhaps most horrifying, he believes that I have a relatively fast progression because of the change in only a month and a half. My time is limited, folks, and I’m terrified.
If there is a “positive” side, I still do not have any obvious impairment at this moment in time. I can still walk (still can do heel to toe walking with no issue), have full use of my arms and hands (albeit weaker and with a lot of shakiness and tremors after exertion) and am able to function normally for the time being. I expect that to change fairly rapidly over the next few months though. There is no bulbar involvement at all, as I am LMN dominant.
Enough for now. I am drinking a cold beer, just swallowed a Xanax, and am trying not to throw up in my mouth. Thanks to all of you, the bravest people on earth, for being here. I hope I handle the coming months with as much grace and courage as the other PALs here I have come to respect and learn from over the past few months. Strength to us all. Kevin