ALS is best known for what it takes away. Well, it has given me something new. Tubes. I am up to five so far. That’s correct. I have five tubes in my body because of ALS. I will break them down by when I got them and why I chose to get them.

Round 1: Feeding tube also known as a PEG tube

As my breathing started to weaken, we and my care team made the decision to get a feeding tube. I wanted to get it placed before I needed it. The idea of an emergency placement was not appealing. I got my PEG feeding tube in July 2023.

We didn’t use it much to start with. Typically, one carton of Jevity for nutritional reinforcement. We also used it for additional water as this was part of the care involved. My first feeding tube was “permanent” which means there is no balloon and it didn’t require replacement. It had the 8-12 inch tube that came out of my stomach which is pretty standard.

Well, that tube was pulled out at the Cincinnati airport during a transfer by airport staff. This resulted in my first ambulance ride. I had a new PEG installed at the ER. This one had a balloon that is inflated with water. That keeps the tube securely in my stomach.

Now that I had a replaceable feeding tube, we started working with our gastroenterologist to change to a low-profile feeding tube. This is called a Mic-Key tube or button style tube. At my next appointment, we had this style put in at my next replacement. The funny part is that the Mic-Key is commonly used in children, not adults. During every subsequent visit to the hospital, I had fun watching Sheila train nurses how to use it.

Round 2: Foley catheter

In May 2024, my son and his wife were taking care of me while Sheila was in Minnesota helping my daughter prepare for her wedding. On Saturday that weekend, I couldn’t urinate. They called 911, and I was rushed to the ER in an ambulance. The doctor inserted the catheter and I immediately felt relief.

The issue was caused by my enlarged prostate and my inability to stand. I went to see my urologist for a follow up appointment. During the appointment, I asked about keeping it for two reasons. First, it relieved the issues caused by the enlarged prostate including the constant urge to pee. Second, I didn’t need to call a caregiver to help me with a urinal.

My urologist agreed to leave it in but warned us that extended use could cause complications like UTIs. He was right, of course. I’ve had multiple UTIs and catheter issues. But it has been more good than bad.

Round 3: Tracheostomy

Let me start by saying that the decision to get a tracheostomy is the most difficult decision we wrestled with since deciding to move to Kentucky. I had been using a noninvasive ventilator (NIV) or BiPAP for a couple of years. By the end of 2024, I was on my NIV all day and night. I had my first bout of pneumonia that fall.

After my pneumonia and hospitalization, we discussed getting a tracheostomy with each other, doctors, and our children. We also did our own research. Our ALS doctor questioned the quality of life of getting it done. My family wanted me to stick around. Our research included positives and negatives. In the end, we decided to proceed with a tracheostomy when I needed it.

In January 2025, I was admitted to the hospital with double pneumonia. During my stay, I stopped breathing, and they had to incubate me. The doctors asked us about a tracheostomy. Because we had already made the decision, our response was yes. The procedure went well. We had to try three different sizes, but we got the right setup.

There are many positive things that come from the tracheostomy. I didn’t need to think about breathing. I can just breathe. No more masks! I could easily kiss my wife again. It was easier on Sheila because she didn’t have to manage my mask all the time.

The big negative is I can’t talk anymore. The reality is that I could barely talk with the NIV by that time. So this was just a progression. A negative commonly thrown out is that I would be hooked up to a machine to live. Once again, the reality is that I already was hooked up to a machine to live. The new ventilator was designed for it. Finally, my caregivers had to learn a new ventilator. They were able to handle it. Any additional maintenance and care were equal or in cases easier than keeping me alive on the NIV.

At the end of the day, we are very happy to have gotten the tracheostomy. It’s improved my quality of life at this stage of my disease.

Round 4: Tubes in my ears

I couldn’t hear anymore. My ears had fluid and back pressure that kept me from hearing anything. Basically, I needed to pop my ears, but I can’t. I saw that a couple of my ALS peers were getting tubes for similar issues. I contacted my ENT doctor who did my tracheostomy about my hearing.

In May 2026, I got a hearing test that confirmed I couldn’t hear. He put the tubes in that day. When he made the incisions, fluid came out of my ears. I immediately could hear again. It is so nice to be able to hear my wife again (most of time 😉).

What does it all mean?

ALS totally screws with your life in unexpected ways like these tubes. Some of these tubes keep me alive and some improve my quality of life. Everyone can choose what they want to do. The one that matters the most is the tracheostomy. It extends our lives the most. I chose life because I believe that God is not done with me yet and my family wants me around for a bit yet.

“For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”

Jeremiah 29:11 (NLT)

Each of these procedures represents a choice. Some were easier than others. I choose not to give up. This disease sucks for me and those around me. But I have a hope and a future beyond this world. I will walk again.