A Day in the Life of Me "Chapter 11"

We all have images in our head of what a sick person looks like. Either through a TV show, personal experiences, or our own imagination. "A Day in the Life of Me," is to show you the harsh reality of what ALS truly looks like through my own day to day.

Laura used to call me a busy body - always floating around like a bumble bee, moving from flower to flower. She would ask me if I ever stop. I was never one to sit when I knew something needed to get done, especially in the long summer days. Like the bee, getting it all in when I can. Today I am more like a sloth... slow and weak, just hanging around. My body won’t let me fly around the garden anymore and it takes a lot just to do a little work without needing a rest.

Over the past six months, my progression has really taken a toll on my body. I have lost 50lbs, fought two bouts of pneumonia, endured three ER visits, a Tracheostomy, a bronchoscopy, and a 14 day hospital stay... all of which were mentally and physically crushing. For someone without ALS, this would be hard, but for the PALS, it is 10 times harder. I know you look at my picture and think, "50 pounds, where? All I see is Sexy with a 6 pack?!?" But, the fact is that this is my reality now and I do what I can to keep all the ladies away.

I used to dream about getting old, having grandkids, and sitting back in my rocking chair. My dad died at 90 and mom is going to be 91 in a few weeks, so I had a good chance. I would tell the kids I wanted to die as the oldest man in the US, get my certificate, and then kick it. I never thought I would age 25 years in one year and be at a point where I would need help with basic care... just like I did as a child. I now need help with getting dressed, someone has to guard me when walking up or down stairs and taking showers. Like Benjamin Button, I have reverted back to a 5 year old as I stand there while Laura washes me. In the past I might have taken advantage of this, but not any more. The love Laura shows me every day to make sure I am taken care of is incredible.

When a mother has a baby, the mother has to feed, bathe, dress, and protect the baby. As the baby grows, she teaches the baby to eat, walk, talk and grow. As the child grows older, their abilities get stronger until a time when they are now the mother. or father. At one point in our life, we will need our kids to help us with the very things we taught them if we are lucky enough to have them in our lives. However, I never expected to be at this point at the middle of my life. Laura has been teaching the kids to help with the feedings, suction, BPap, and other needs now, and together they are my little Army of support. A true circle of life in a matter of two years and I am blessed to have my family love and help care for me.

This post will walk you through my typical day.

Its 7 AM and I am just waking up. This is not a set time I am supposed to wake up, but mostly its around 7. Laura comes and unhooks the bilevel positive airway pressure (BPap) off and I take a minute or so to readjust to the fresh air. The “BPap" is a type of ventilator—a device that helps with breathing. During normal breathing, your lungs expand when you breathe in. However, for ALS patients, lungs do not function properly. We need the machine to help our lung function properly to take in oxygen, but most importantly, to also remove the CO2 from our bodies, which is toxic if not expelled. In my case, it is attach to my trach so I need help putting it on and off.

Shorty after its time to eat and Laura prepares the feeding tube for me to eat my first meal. This is generally around 100 ml of the 2 cal shake. This is the only food I eat these days and it provides me everything my body needs. She also, if needed, adds additional liquids or medicines during this meal. I am 100% supported by the feeding tube now so all foods, liquids and medicine must past through the tube. All pills must be crushed and added to water as well. I technically can eat or drink anything I want as long as it can pass through. But why, I do not taste anything, so there’s no enjoyment and frankly a waste of time and calories. I do like coffee, but that’s about it. I generally eat throughout the day so getting hooked up often is time consuming and a big part of my day.

I like to then get up and go to the dining room table where I work on my blog and other things with a beautiful view of my back yard and our visiting animals and birds. Like the sloth sitting in the tree, I sit in my chair watching. It’s nice to watch the squirrels run around and play, the various birds, and my cats chasing them all.

If it is nice outside I like to walk my yard, but with a trach going right to my lungs, the cold air means I cannot stay out long. It’s getting colder now and the vegetable garden is done and my ponds are also too cold to feed the fish, so I don’t have much left to do now. I also watch a lot of TV now when I get tired. When I was a bee, I might get in a few hours after dinner. These days I’m asking for suggestions on good shows to watch. My other entertainment is all the medical breaks needed throughout the day.

My bedroom, which used to be where I would rest, dream, and make love to my wife has turned into a hospital room. The many medical devices needed to live have consumed the peace I once had in my room. Long gone are the days of sleeping in a warm bed snuggled up with Laura and my favorite pillow. I can no longer lay flat. When I do, my lungs feel as if I have sand bags on top of me. I have to be propped up to sit or sleep so we have moved a recliner in the room where I sleep now.

This machine converts air to oxygen need when on BPap and trach collar. Tank in back used during power outages.

Throughout the day I have to have my trach suctioned to clear my airway. Generally, it’s a smooth process, but on occasion I cough and something gets stuck. I have to remember to be calm that I will be ok and trust Laura to clear it. The only way to explain it is if you were choking on food and trying not to panic because rationally you know you will lose oxygen that way. We have a suction machine Laura connects the tubing needed to clear whatever is there. To be clear, the trach is a direct opening to my lungs. When Laura puts the suction tube in my trach, it can literally touch the top of my lungs. If she is not careful, she could suck a piece right out.

Suction machine

I also use a cough assist machine during the day to help me bring up anything in my lungs that I cannot on my own. Normally a person can force up and out anything in their lungs with their muscles. For an ALS patient, though, we need assistance. The machine attaches to my trach and forces air in, then sucks it out like a plunger in a toilet.

Cough assist machine

For a trach patient, it is important to keep the trach moist. For me, there are two ways to do so: I either get on BPap or the Trach Collar (a machine that provides oxygen and moisture). The trach collar is not as restrictive as the BPap, so I can use it while watching TV.

Trach Collar Machine

As the evening approaches, I start preparing to rest. I take my last meal and meds, and watch more TV to wind down. Around 9 I’ll take some melatonin, and around 10pm I'm back in my chair and on the BPap. Even though I am getting sleep, it’s not hours of peace. I am up throughout the night for various reasons, so Laura has to get up and suction or help me readjust... rest for us only exists in spurts. We are still finding our groove, and Laura is my angel - jumping up when I move to make sure I am ok. I try as much as I can not to disturb her rest, but have not gotten that right yet. My needs are starting to outweigh our sleep.

To help with our communication, we have developed hand signals. Soon, though, that too will change and we will have to adjust again.

Every morning, we start the routine all over again.

This is my day now, however. As the days go by, the more we learn more about my needs. As I progress, I am no longer the man I once was. My work over the years, raising and loving my family, though, has made me a better man today. I have my family and God on my side and together we live A Day in the Life of Me.