Pain verses Weakness

In the first few months of 2026 significant changes have happened and both my medications and my overall health. For more than 10 years I’ve been dealing with back pain and that has increased as the condition causing it has expanded and grown along my spine causing the radiation of nerve pain around my torso. I’ve been managing the pain with a very mild opioid called tramadol and have had to increase the dosage of that medication several times to keep the pain in check. Talking with my primary care physician we decided to try a different approach. Instead of just a pain reliever as needed we shifted to a 24 hour slow release pain medication that acts as a base layer and then additional pain medication as necessary or when needed. The new medication is a slow release morphine that works for about 10 to 12 hours and so far has been an excellent pain reliever option. There are some days that I don’t even need to take the tramadol just the morphine 12 hours apart and with food.

With my pain levels significantly reduced, I am definitely noticing how severe my weakness has become in my core and lower extremities. My abdominal and back muscles are very weak and I require help either to grab onto something or a person to help me sit up from a reclined position because I just don’t have the strength to do that naturally. Another significant change is my walking speed and gait. Over the past two months my steps have shortened considerably to almost a mechanical shuffle instead of taking deliberate strides. As the weakness has progressed I am walking less per day with maybe two or three small walks outside or around the house.

Getting up and down the stairs to go to the only shower in our house is becoming extremely challenging. We are still in the paperwork process of getting the veteran administrations specially adapted housing grant addition going for the house. This paperwork process has taken almost two years and we are still not ready to break ground. Just today I sent a message to the VA representative as well as the builder to let them know that I am very near the point of having to use an external shower facility like the program offered at our local YMCA. I think I have about one month or so before I won’t be able to go upstairs again.  It is hard to think about others with ALS who progress a lot faster than I have because two years might have been too long and they would have expired before they got the necessary living conditions they need from the VA.

Feeding Tube Changeout

Recently I had my first feeding tube change out. This procedure was fairly quick and easy and most importantly it was almost painless. This is supposed to be an annual process that way the feeding tube and portion that extends into the stomach does not degrade too much. It was a quick and easy process that took less than an hour and I was fully awake without any local anesthesia or pain suppression. Basically it just felt like a little bit of pressure when they deflated the internal balloon and pulled out the old feeding tube and then push the new feeding tube in and reinflated the balloon to secure it in place. Currently I’m not using the feeding tube except for daily flushings and to take medications that don’t taste good in a liquid format. It’s a new feeding tube does not have a six inch pigtail hanging off of it instead it uses a short tube that you connect when necessary to use the port. This makes dressing easier although I still do use a compressive wrap around my torso to keep the gauze in place. I think there will always be a little bit of seepage around the port so the gauze is necessary to catch any leakage. The skin underneath the external connection port tends to be a little bit sensitive and requires wound care to keep it clean and healthy.

ALS Testing – Light Chains

At my last ALS clinic visit the neurologist requested that I get a new type of blood test to measure neurofilament light chains which is a blood artifact that can be found as a result of motor neurons degenerating in the body. I wrote a previous blog on this topic doing some research to figure out exactly what those test results would mean. At first I was very reluctant and hesitant to do the blood tests. I wasn’t sure if the results would help or hinder my diagnosis with ALS. On our trip to the Seattle VA hospital to get the feeding tube changed out were significantly early for the appointment so I went ahead and went to the lab to get that blood draw. The blood draw was so specialized that the lab technician didn’t even have the test in their system to be able to print out a label for the vial. My doctor had given me a couple of tests procedure numbers to provide to them so that they could accurately draw the blood and send the vials off to the Mayo Clinic for processing. My neurologist called about a week later to tell me the results of the test.  According to the test I fall within the 95th percentile for the measured blood marker which is a collaborating point for the diagnosis of ALS. This number typically can be used as a method 4 gauging ALS progression in a patient. Although I was requested to have this test performed because I was progressing so slowly and my test results indicate that I should be progressing rapidly. So once again, the doctors have a new data point but it is not conclusive or always consistent across multiple patients.

Overall I am feeling pretty good and getting much better sleep with the pain control in place. When I first got the new pain medication there were several instances where I slept for nearly 24 hours and only woke up to eat and then go back to sleep. I guess I needed to catch up on getting rest. I’m trying to stay as mobile as possible walking as much as my body will allow. Of course I’m keeping my brain active by doing everything I can to distract myself. I have noticed that I am much more emotional and have what I call emotional break days. It is weird how very small things that you might not even think about normally, can trigger huge emotional shifts. I’ve been managing my emotions a lot through music the last few months so when the family here’s angry white boy music blaring from my office they know I’m having a bad day. Eventually the angry white boy music transitions to country or 90s hip hop and that’s when everybody knows I’m starting to come out of the funk!!