“A Walk In My Shoes“ Chapter 61

It really bothers me when I miss a week blogging.  It’s not because I don’t want to write, but sometimes I can’t think of a topic. Sometimes I have a topic in mind, but can’t think of enough content to write a whole post about it. When I do miss a week, without fail, God manages to remind me that what I am doing really does help others.

Two weeks ago I skipped writing for the week, and again, I received the following reminders that my words matter:

“Hi, Thanks so much for this blog.  I'm a doctor - ex-military.  After 11 months of symptoms I finally got my diagnosis:  all the progressive arm and hand weakness; All the puzzle pieces finally fit together.  I know the natural outcomes, I have followed many cancer, alzheimers, MS patients to their deaths... but never had an ALS case in 30 years of practice.  My wife and I are still reeling from the diagnosis of Nov 16 2023...  I will read your blog from start to finish.  Thank you.”

“Good evening sir. Just wanted to say that I absolutely love your blog and your sense of humor. You’re helping me with my mindset as I’m going through the diagnosis phase of this thing and I’m choosing to LIVE with whatever I end up having rather than dreading its inevitable outcome. Thank you man. You’re changing my life. Also… Go Cowboys! Screw them birds.”

God humbles me by sending these reminders. This blog is not for me and I am merely a messenger. When I started this blog, I was writing to tell my story and hoping to help others. Over time, though, I've found that I gain more than I give and it fills my heart.

I also receive questions from my readers. Many of you have also asked if I am in any pain. I normally answer saying “yes” or “not much,“ but I am not sure if this actually helps. So, keeping with my intention to help others understand ALS better, I thought this week we would do some practical exercises in order to accomplish that. I will work from my head down:

1. Issue: I used to drink several quarts of water a day, but now I’m not able to do so, resulting in dry skin. I have lotion applied every day, but not on my head so it is itchy all day long. Practical Exercise: Tap your head with a brush or comb so you activate your nerve endings. Now wait and don’t touch or scratch your head. Do you feel how your head itches? Now imagine how that would feel if you couldn't scratch your head all day. My solution: Daily head scratches before bed from anyone willing. Feels so good after a long day when they hit the right spot my eyes roll back and I get chicken skin.
   

2. Issue: Shoulder weakness - it feels like it is being pulled out of the socket. This dull consistent pain comes from the muscle loss putting a strain on the ligaments. Practical exercise: Pick up a heavy dumbbell or bucket of water and stand with arms extended on your sides. Do you feel that pull on your shoulder. That’s it right there. My solution: Don’t pick up heavy dumbbells or buckets of water. Oh you are right I can’t. lol
   

3. Issue: A big pain in my ass. No, it’s not my boss, I'm retired. My gluteus maximas has turned into a gluteus minimas. My junk fell out of the trunk. My ass is as flat as a crepe. No, not a pancake, because pancakes are fluffier than my ass. I sit on my ass all day and the cushion feels hard as a rock and my cheeks go numb. Practical exercise: Go outside and find some flat stones and sit on them until your ass is numb. Add a small rock and sit back down. Do you feel the sharp pain? My solution: I have bought four different types of seat pads and none have worked. The current one is a Roho that uses air and I find myself wiggling or asking for someone to adjust the air all day. At the end of the day my cheeks are numb.
   

4. Issue: Blood circulation to my legs. I don’t know why, but the circulation in my legs is bad. When my legs are elevated things seem fine, but if I lower them my feet turn purple and numb. I grew up listening to Prince singing “Purple Rain,“ but now I’m the one singing “Purple Pain." When my feet bump into something or scrape against something, it feels like I am being stabbed. Practical exercise: since we are speaking about ALS I have a new ice bucket challenge for you. Fill a bucket with water and ice and soak your feet until numb. Remove your feet and wait about a minute until they start to tingle. Now have a friend take a fork and scrape or stab your feet. Let me know how that goes for you. BTW you can’t make any noise to tell them to stop.

My Solution: I keep my legs up most of the day. (Not like that). I have compression socks when I am out. I also have my caregivers massage and use a massage gun daily.

I find myself being challenged every single day. However, strangely enough, these challenges keep me focused on something to do.  I hope that the post I share continues to help others better understand ALS. 

Continue to fight for a cure and keep living

.Let me know how your practical exercises work out.

Love and Blessings