“Self Care To Help Care” Chapter 99

Do you remember the song “Head and Shoulders, Knees and Toes?” 🎶 Songs like that one helped us learn how to brush our teeth, comb our hair and wipe our ass. As teenagers, when we discovered the opposite sex weren't people to pick on but to look good for, we made sure we managed our self care as best as we could.

From the day I got my first ALS symptoms, "Head and Shoulders" would pop into my head. Over the last three years, it slowly happened that I couldn’t manage my own self care any longer. First I needed help to button my shirt, and then it was tying my shoes. After my arms started to lose function, I couldn’t brush my hair and teeth. Eventually I couldn’t even wipe my own ass or shower myself. I was turning into a kid again who needed help. I certainly didn’t want to be the stinky kid in class, so I had to rely on others for help. I had to turn “self care” into “help care.”

I am going to tell you what Help Care I get from head to toe, and I hope it will help you and others continue to understand the reality of ALS for both PALS and CALS.

One of the first issues I started having was dry skin and scalp, which was completely new to me. At first, I showered, washed my hair, and lotioned my own skin every day. Eventually, though, I needed help for a daily wipe down and someone helped me shower and wash my hair weekly. I thought that maybe my skin and scalp were dry because of the infrequency of washing my hair, so we started washing my hair more often using dandruff shampoo, and l had lotion applied daily, but that only helped a little. It seemed as though my body was sucking the lotion up as fast as dropping water in the desert 🏜️. I was going nuts with the full body itching and not being able to do anything about it myself. You've got to love ALS’s sadistic sense of humor. It takes away the ability to move, but enhances your nerves at the same time so you feel EVERYTHING!

What I didn’t realize was that my symptoms had also reduced how much water I was taking in. As I started choking while eating and drinking, so I was not consuming as much as I had before ALS. I drank about a gallon of water a day and pissed like a race horse. Once I realized I was only drinking about 3-4 cups a day, we made a change. Now during the day I drink water with every meal, 8 oz of Cistus tea, and at night I get 1,000ml of water with electrolytes using a night feeding pump. Now when I put lotion it keeps my skin moist and my dry scalp and skin is now soft as a babies ass.

Since I can’t scratch my head during the day my caregivers massage my head and I have whoever tucks me in at night scratch it. This helps with circulation and boy it feels sooo good.

Bed sores are probably the number one thing we worry about right now, and we work hard at preventing them. People who are not bed bound or in a wheelchair all day are able to move around so this is not an issue. However, not PALS, who already struggle with poor nutrition and hydration. We need enough fluids, calories, protein, vitamins and minerals every day to maintain healthy skin and stop the breakdown of tissues. Without a simple way to ensure this for PALS, we are particularly prone to developing sores. Which leads back to another reason hydration is important.

We have to make sure we eat enough quality food or liquid formula food. I use Kate Farms which is all natural and way better than other formulas. Keep hydrated. Check for any hot spots and care for any that heat up and keep my skin clean and dry. With this diligent care, I haven't had one bed sore in two years. Somebody knock on wood for me, my wheelchair doesn’t have any!

The first six months after diagnosis, the VA provided a Physical Therapist twice a week to help me exercise and stretch. However, since PT is to help recover and gain strength and PALS only lose muscle over time, the VA stopped it after four months. With no intentional activity, your body will seize up like an old rusty engine. Fortunately for me, my PT spent the time with my caregivers teaching them how to stretch me and now I am a well oiled machine.

Since the PT left, I am stretched at the minimum twice daily. Our PT also recommended using a massage gun to help with circulation and inflammation. We use it on the “large muscles” at least once a day. I use "large muscles" in definition only because all of my muscles are simply sleeping. The gun, along with stretching, has not only maintained my flexibility, but it also prevents muscle and joint pain, which is common for PALS. Nothing feels better than the gun on my feet and my tendons relaxing.

I’m told a good blog is 1,000 -1,500 words with relevant pictures, so I’m leaving it here with these nuggets to chew on or sip through your peg. I hope this helps you find comfort and an excuse you can use to get your feet massaged and your head scratched. Why yes, the porn stash is back. My daughter is growing it out. Something to do with my holloween costume. I told her I am okay with anything, but “Magic Mike” or “Mater” the tow truck in the movie “Cars”

Love and Blessings

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