“My ALS Foot Drop Solution” Chapter 95

Having Bulbar ALS most of my issues were in the upper neuron areas initially so I didn’t deal with limb issues at first. However, as my ALS advanced my feet started to drop. I was no longer able to keep my feet from falling forward which causes pain in my ankles, Achilles and plantar facia. So I had to find a solution.

At first I was using pillows at night while in bed, and during the day I was using the foot pads on the wheelchair. These tricks worked for a little while, however, as my legs got weaker, my feet started turning out and that caused pain in my knees.

After some research and asking friends, I bought some night splints for plantar fasciitis. I had experience with this type of boot in the past when I really did have plantar fasciitis. I used to toss and turn a lot in bed when sleeping as well. So when I was wearing the boot, I ripped holes in two different 1000 thread count bed sheets. My foot felt better, but Laura was mad. I guess we needed more threads. 😂🤣 This time was different because if there is one good thing about ALS, it cured my restless legs and the tossing around.

I ended up buying the boots and started wearing them at night, and they successfully helped with the foot drop and keeping my legs straight. After the first night I felt a little discomfort under my ankle bone. The next night I realized that the frame of the boot was rubbing on my ankle, so I asked my daughter to put a little padding between my ankle and the boot. This lasted about three days when Laura noticed I had a cut on my ankle from the boot, so I stopped using them. I used to be a fast healer, but it took me a month to recover. In the meantime, I returned the boots and found a different brand and started to use them after I was healed. The same thing started happening again, but this time I stopped before any cuts.

After that I went back to propping my feet and legs up again using pillows. I felt like I had pillows everywhere to help keep me safe.

Last month I saw a picture of a friend who also has ALS wearing a different kind of boot, so I had to ask what was he wearing. You see there are two things PALS do.

- We observe what other PALS are doing and see if it would help ourselves.

- Like the Hollywood Red Carpet reporters we ask, “Who are you wearing?” Only we wear less sequins because they would hurt to sit on all day and we cover our body parts from hanging out because YOU CAN’T HANDLE ALL THIS!

My friend was wearing the “Sage Prevalon Heel Protector III.” Sounds cool right? Now stand up in the Superman pose and say it. Sounds like superhero boots, so I had to get them to go with my ALSMAN cape.

They are a little pricey at $171.97 for two, but I got free shipping. 🤣 When I got the boots they looked like a pair of UGG-style moon boots. When Laura put them on my feet, they started smiling as if they were now floating in the clouds, ☁️ all soft and pillowy. Because there are no frames, there is nothing rubbing against my feet. The use of Velcro straps makes them easy to take on and off. They do come in three variations and different sizes, and I went with version III because they have a stability wedge which prevents rotation. This keeps my legs straight in my wheelchair and bed.

I have been wearing the boots for a week pretty much 24/7 and I have to say, my feet have not been happier. My feet do get a little warm but for me that’s ok because I have circulation issues and it helps. If they get too warm I just open the straps. I'm not sure how to clean them, but will cross that path later. They are not meant for walking around so if you need that these won’t work, although I am sure you can take a few steps if needed.

Throughout my ALS journey I battle every day to find comfort. My caregivers definitely get their 10,000 steps and squats as they get up and down and walk back and forth to help me stay comfortable. So whenever I find something to help myself and others, I share it.

So for my PALS out there reading this - If someone asks you, “who are you wearing?” Turn around with your best “Blue Steele” look and tell them, “What these old things, they’re just my ALS super hero boots!”

Love and Blessings

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