We underestimated the progression of my disease at nearly every turn. Of course we had no idea that from diagnosis to being disabled and no longer able to work would take seven months. My career required me to be behind a desk with a computer yet was unable to type any more. I’m very thankful for my company I worked for and my managers over me. They were very supportive and did everything one could to help me including providing long term disability until I turn 65.
Start Radacava infusions as soon as you can. This is the one treatment with the best odds of helping I know of at this time to slow progression. I waited too long. Take occupational therapy and physical therapy serious. Use it or lose it. Begin using a walker when you start losing your balance, you don’t want to break something. I started falling a few months after diagnosis and was lucky enough not to break anything.
I began noticing speech irregularities within weeks of diagnosis. I remember asking my boss if he noticed and he said he didn’t. Nothing you can do about losing speech I know of but when the time comes be ready to get computer assisted eye tracking software and get training to use. Otherwise you and everyone around you will be frustrated.
As far as eating, drinking and swallowing, I began needing assistance by summer of 2020 due to losing the use of my hands. For drinking I went from using a cup holder and straw to not being able to suck through straw by Fall of 2020. We were able to find an automatic cup which requires an attendant but it works. For eating, my beautiful wife Julie has been feeding me for several months. Be careful once you have problems swallowing since it will create issues with your lungs. I had a feeding tube installed November 2020 for supplemental feedings. You want calories and nutrition so ensure, protein drinks and anything you can eat safely including ice cream Since weight loss is a major concern.
I started noticing breathing irregularities by the end of 2020 so was prescribed a bipap and cough assist machine. I asked when a tracheotomy might be needed and was told when you’re wearing the bipap 24/7. The bipap will prolong the life of the diaphragm. Also at some point phlegm will become a problem so get a suction machine.
When it is time, don’t be afraid of moving in to a power chair since it will increase your mobility. The VA provides chair and assists with the vehicle to accommodate chair. Be careful when sitting for long periods, do not want pressure soars to develop. The VA recently provided me with a bed that has air mattress which turns me from side to side throughout the night. As far as urination when you are confined to chair, do not be afraid to begin using condom catheter with either a leg bag for venturing out and a larger size for bedtime.
I hope to inform folks on my experience as one who has ALS but also offer hope to those have the disease. Your life is not over but a good support system is needed, like family and the Veterans Administration for me but also MDA and organizations like Team Gleason. Please contact me at joelanham53@gmail.com if you have questions.