“What’s Your Sleep Number?” Chapter 85

When I was diagnosed with ALS, I never thought Laura and I would be separated.

Since Laura and I have been together, I have always slept on the right side of the bed. I can’t remember how we decided who slept where, but we did somehow. Of course, which side of the bed didn’t matter when you first get together, because you think it’s cute to lay all over each other in the middle of the bed when you're young. Then you realize waking up with a face full of arm pits and being tired from snuggling gets old. As a result, you take sides and draw a line in the sand you don’t cross, not even if you’re DOUBLE DOG DARED!

My first ALS symptoms started with my tongue and eye, so our sleeping arrangements were not affected. About six months later, I was using pillows to prop me up to sleep. Lying flat made it difficult to breathe and the pillows helped. Three months later I was not sleeping well at all, and I started leaving the bed at night in order to sleep in the recliner. This was the beginning of our separation.

Realizing that sleeping in the recliner wasn't the best circumstance for me, Laura bought a new bed for us. Knowing a traditional flat bed was not going to work for us anymore, this bed had incline and massage features. The massage features were cool and I didn’t need a quarter, Heyy! This is a good bed and we thought it would mean that we could sleep together again, but I couldn’t make it through even one night. At the time we didn't realize that it was actually due to my CO2 poisoning than the bed itself, but back to the recliner I went.

Over the next few months I was in and out of the hospital with pneumonia, and we realized it was time for me to get a hospital bed at home. The ability to adjust the bed electronically was important so that I could breathe well and get the quality of sleep I needed. In the hospital I was almost sitting upright at night, so that was a must have when buying a bed. Being able to move the bed up and down so my caregiver didn't have to bend over was also important. You have to take care of your caregivers.

Side Note: why do the words Caretaker and Caregiver have basically the same meaning? I would much rather receive care than have it taken away.

Caretaker: A person who gives physical or emotional care and support.

Caregiver: A person who gives care to people who need help taking care of themselves.

Sorry I just had a squirrel moment, back to the post.

We contacted the VA and they ordered a bed with the features we thought we needed, completely ignoring the advice from our ALS mentor. We received the $679 MedPlus FE Full-Electric Homecare Bed. According to the website I found it is a "Staff Favorite" and "#1 Best Seller." When the bed arrived, it looked like a hospital bed from a WW II movie. It was a brown metal frame with a six inch mattress (we did add extra foam padding), but it had "all the features we asked for." It’s a good thing we were never in the TV show “Cribs,” because viewers would have gotten a good laugh. For the past year, this is where “all the magic happened.” You know what I mean, I get 8-10 hours of sleep ALL THE TIME! The bed would make creaking sounds like an old elevator going up and down. When putting them down, the side rails would crush the toes of anyone standing underneath it. What we didn’t realize was that we would eventually need other features that this brown beauty basic model was missing. BTW I will be posting our "Staff Favorite " bed for free. As long as you can pick it up in the Springfield, VA area, its yours!

On Friday we received an upgrade, and this time we were better prepared. (I want to remind readers that all ALS clinics should hire a PALS or CALS advisor to ensure PALS get what they need - when they need it - the FIRST time). The new bed is like the cool car bed I had when I was twenty... I mean... had as a kid. I got the Evolution Low Boy® Fall Prevention Bed with Stratus Turn™ Rotation Low Air Loss mattress. The air mattress rotates air around to prevent bed sores and my body from going numb, adjusts the firmness automatically, and is eight inches thick. To be honest I didn’t think I would like the air mattress based on one I slept on in the hospital, but I have been sleeping well on this one. The frame has side to side and front to rear tilt, as well as feet and head tilt features . It can also weigh me and I now weigh 167 pounds. I have gained 32 pounds back from the 50 pounds I lost my first year having ALS. This is not a weight loss program I would recommend to anyone - there are too many restrictions. 😂🤣 The first night, when my daughter was trying to figure out the buttons, I felt like I was in a low rider with hydraulics bouncing down the street. The best part of the bed is that the colors are Dallas Cowboy blue and silver. Now I need to add some stars and bling and it will be perfect. I know there are other beds with more options, but this bed is good and I should have ordered it the first time around.

I am happy that I can finally sleep and get some relief for my back. However, I miss laying next to Laura at night. I never could understand why couples that have the option to sleep together prefer separate beds. Even when we were upset at each other, we always went to bed together. Right about now, I would gladly take a face full of underarms than lay alone in an empty bed. I know this is not the last thing ALS will take from me, but this one hurts the most. I guess I will have to settle on the cats keeping me warm and waking up with cat hair in my mouth.

Love and Blessings

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