The past 12 months have been adventurous to say the least with this ALS journey. When I was diagnosed in January of 2024 I was not convinced that I would make it to my 55th birthday which happened on December 6th this year. After the official diagnosis in January I kept it to myself and within my family until I had to talk about it almost by accident. I was meeting with my new immediate supervisor who just came on board the command where I work. She was aware that I had some medical issues that were happening that might need support and consideration for hours, but nothing was disclosed yet. One afternoon I happened to be in the office at the same time that she was, and she asked how I was doing and I decided it was time to tell her how significant the medical issues were. This was the first time I had to say all of the scary and painful things out loud and explained to someone else the condition, as well as the general prognosis and what that means for working and living moving forward. I completely broke down while trying to describe ALS and what I anticipated for the near end potentially short future of working. The emotions of that moment were sudden and uncontrolled and I apologized several times for become a crying blubbering mess in front of her.
I spent the entire year of 2024 getting my affairs in order making sure that all of my bills, debt and end of life decisions were made and documented. 2025 was spent trying to live each day the best that I could and be in the moment with my family. Now here we are at almost the end of 2025 and I’m still going strong.
Physically, I feel not too much different than at the beginning of 2025. I have lost more dexterity in my hands with my left hand being almost completely useless. I can’t pick up anything with weight and usually I only use it to support picking up something with my right hand. My muscle degeneration is creeping up my extremities and into my core. I can definitely notice and feel a difference in the muscle mass of my shoulders and upper back making it difficult to put my arms above my head. My left leg seems to be progressing faster than the rest of my body in that it feels weaker and requires active monitoring so that I don’t fall or trip. My breathing which is a key indicator for progression in ALS seems to be in a steady state most of this year. I did go from 75% lung capacity down to 65% and it seems to have steadied out there. My most recent lung capacity test was 70% which is a particularly good day for me so as long as it stays in that range I feel pretty good.
I’m still working full time and that is great for my mental health because it gives me something to focus on. The more projects I have the better and I seem to be getting them done faster and higher quality because I have lots of sleepless hours to figure out all the small details. Speaking of sleep, I seem to have fallen into a three day rotation where I have two nights of not very good sleep and then a full day of catch up sleep where I’m pretty much sleeping the whole day. So those hours that I can’t sleep, I try to be productive working on day job projects as well as my own learning and personal design projects.
Today (Monday December 15th) was one of my ALS clinic days at the Puget Sound VA hospital at American lake in Tacoma. In a single day I get to see all of the specialists and get evaluated on every aspect of my physical, mental and emotional progress. Today my lead neurologists threw me for a loop, suggesting that I was progressing so slowly in ALS that he might want me to take some additional tests to check a few new things that he’d learned about ALS probably in a seminar or training that he recently took. So I’ll be getting a few more tests that don’t have names and are completely inconclusive, probably with counterintuitive findings in the coming months.
The new wheelchair minivan is working great and really makes it easy to get in and out of the house so that I’m not stuck in my office every day. There have been many instances where we couldn’t find parking with the side entry reserved area for handicap parking. We usually overcome this by finding 2 spots and taking out both of them so that I can get the scooter or wheelchair out of the vehicle. I’m still pretty mobile being able to walk around the house with a cane but today my physical therapist suggested that I should start using a Walker instead of the cane because my balance is even more compromised.
The house remodel project is coming along. We are almost through the paperwork phase having submitted the build plans to the county for permitting which got approved really quickly. We are now waiting on the paperwork to be approved by the VA so that the project can get started and anticipate that we’ll begin maybe early January?! Once that begins there will be a lot of changes that need to happen within the house so we will have to pack up everything on the ground floor of the house either put it in storage garage or maybe upstairs if it can all fit. At some point we’ll have to spend at least a few nights in a hotel because they’ll be replacing all the floors including my office so we’ll need to be out of the house for those days.
This post turned into more of a general review instead of just health but now you are caught up on everything happening in my world. Keep on keeping on!
