Aloha Frank

I was diagnosed with ALS in March 2020. It took five months and four different doctors to finally figure out what was the cause of my sudden speaking difficulty. Sadly, the neurologist who finally made the diagnoses admitted that I was the first ALS patient he had seen. He proceeded to tell my wife and I in his office that the disease is terminal, that there is no cure and no effective treatment. He said I could expect to live no more than 24 to 36 months and recommended that I take rizole (think that’s the name) every day, but said the most good it would do is prolong my life by 60 days. He also mentioned one more possible treatment that is administered by a tube in my throat, but recommended against it as not being very effective. The visit in his office took less than five minutes. I have not heard from him since. Understandably, my wife cried for hours after he gave us the news. I visit my primary care doctor once a month but only to check on my condition. She has no information or support recommendations for my disease. There is an ALS America representative here who provides moral support and some basic information, which I appreciate. The Veteran’s Administration (VA) is helping me as I am a veteran, but to date I have not been seen by any other doctor, VA or private. However, my wife and I have had several video-conferences with VA medical specialists, some based here in Hawaii and some based in Seattle, WA. They are helpful, but we’re being overwhelmed with so much information that it’s difficult to sort through it all. The disease is progressing much faster than I imagined. Very difficult to eat, swallow, walk or move about unassisted. Prior to my diagnoses, I was exceptionally strong, healthy, active and full of energy throughout my life. This disease came out of nowhere and is hard to accept, but I’m determined to make the best of every day I have left with my loving wife. I appreciate comments on this forum and hope to continue reading about how others with this dreadful disease are coping.