The last few months have gone by very quickly with so many distractions, family events and work projects. I tend to keep myself very busy with distractions so that I don’t focus on health issues as much and that seems to be working in my favor pretty well.
Over the past three months I’ve kind of settled into a steady state condition. I haven’t had too many changes in how I feel both physically and mentally. Physically I haven’t experienced any new symptoms which is good, but some of the weakness in specific areas of my body seems to be getting slightly more pronounced. Mostly in my core body muscles, for example sitting up from a reclined position requires assistance or at the least something to grab onto, to use my arms as leverage. The physical therapist at my last ALS clinic noted that I was not sitting as straight as before with a hunched forward resting position. I think that could be both muscle weakness and my natural position sitting at my desk leaning a little bit forward reading the screens and typing.
Mental health has been very much improved in the past few months. I’m having less emotional days and nights because I’m trying to fill my mind with other things. Every three to four weeks I have a counseling session with the VA supplied health professional and those interactions have been great. A couple of techniques that I’m using and that are proving successful are some relaxation breathing techniques and focusing on the here and now instead of future possibilities. One stressor that I’ve had over the last few months is the forced air volume breathing test which has been postponed once because of snow having to reschedule a few weeks later. This breathing test is my biggest indicator of how strong my core muscles and breathing muscles are doing. The last measurement was 61% which was down 10% from just three months prior. So I am very worried about that number decreasing even more over time.
To be able to measure that forced air volume breathing test the respiratory therapist at the American lake VA hospital had a spirometer sent to me in the mail. This is a small device that mimics the testing equipment that we use at the hospital. Although it is more inaccurate, that will give me the ability to perform the test as often as I want. When the respiratory therapist suggested this device, I told her that I both wanted it and did not want it! Since this is the biggest factor of progression, I wanted to be able to check it especially when a scheduled official test was not able to be performed. BUT I didn’t want the device because I can see myself using it too often and becoming fixated. Kinda like when you’re losing weight and you get on the scale every day and you only see small incremental changes instead of seeing a big change after a week or two (or in my case, NO change hopefully). According to the new spirometer in home monitoring device I am at 62% which is a 1% increase from the last measurement.
One significant change over the past few months has been the maintenance and getting used to the feeding tube. Just a few days after the surgery site did get a little bit infected so I went to my local primary care physician and we got some good antibiotics to take care of that situation. There still seems to be some healing that needs to take place and we’ve begun seeing the wound care nurse at our local primary care facility. Stephenie is becoming a straight up nurse now being able to use various combinations of medications and bandages and techniques on the surgery site. On the daily she has to perform at least two or three flushes on the tube to keep it from backing up or getting clogged from stomach content. About every 24 to 72 hours she has to do a full bandage change out and cleaning around the surgery site as well. It’s kind of nice having her as a nurse and captive audience so I can talk to her about all kinds of stuff and she can’t go anywhere to get away… not that she would anyway but it’s kind of nice to have her trapped!!
This week I start a virtual wheelchair exercise group. Basically it’s a Zumba class but for people with mobility issues performed through a zoom call. This will include some muscle movements to keep range of motion as well as stretching exercises to prevent stiffness. Not sure how I feel about this exercise group but I’ll give it a shot and hopefully it will be something that is helpful.
One of the things I’m trying to focus on is being a part of the ALS larger community, through volunteering with multiple ALS related groups. I have volunteered to support the veterans team that is associated the nonprofit I AM ALS. I’m working with the director of marketing for this organization to create videos that showcase different groups and events they provide to the ALS community as a whole. So far I have two videos created and they are in the final review phases before they go public on the website I’ll provide links once they’re live.
As of March 2025 I’m feeling hopeful and progression seems to be at a steady state condition. As Stephenie always says I’m on the “20 year ALS program” and I hope that is the case. I’m definitely trying to live up to my personal slogan – “Keep On Keeping On!”
