Living with ALS: Becoming catch of the day in a human cargo net
CHARLOTTE, NC: I used to sleep in a bedroom. Now it’s a laboratory. And the idea of a “bucket list” has taken on new meaning. After my ALS diagnosis, rather than fight the reality, I opted to give in and accept it. To basically go with the flow, which, over time, has become increasingly difficult. In the past three weeks, my ALS progression has advanced to a stage where I have added three gadgets designed to make day-to-day living simpler and more normal. Well, a new normal-ish. This last one making me feel like the catch of the day.
While my new devices solve many problems, there is always a level of compromise. This means that no solution is ever a panacea for all inevitabilities.
The Horizontal Shuffle
Among my recent changes is a new air mattress which took considerable time to master. Basically, the mattress is designed using what looks like the flotation tubes you see at swimming pools called “noodles.” The mattress is programmed to function according to settings which regulate its softness or firmness.
During our personal orientation process, we apparently hit a setting that is known as “alternate” which obviously has some purpose, but it was alien to us. Nonetheless, in the alternate mode, every other “noodle” on the bed is soft while the others remain rigid.
When the sleeper moves, the mattress automatically adjusts to adapt to the new position. The purpose is to increase sleep comfort and decrease skin breakdown leading to bedsores.
On the surface that might sound great, but when it comes time to roll over, there are now little inflated barriers in the way which practically force your body into a position that is usually unwanted. Then, within a few seconds the automatic controls take over and you are now realigned into another configuration that is likely to be more uncomfortable than the last.
For the patient, the biggest fear is falling out of bed without any physical means to halt the force of gravity.
The ALS Eye-Pad
Next on the agenda was a new eye-controlled computer. The technology is truly amazing and easy to use, but that does not mean there are no drawbacks. As a writer, it allows me to continue with my craft, which is important to me, and my editor.
Each time the user moves into position to control the computer he or she will be in a different location, no matter how slight, than their previous session. That’s not the problem however since the re-calibration process is just another step and only takes a minute or so to achieve.
The problem lies in the fact that the system works best when the user is close to the screen thereby reducing the amount of eye movement. However, when the user’s position moves, the calibration process must be done again.
Another factor is learning to control eye movement in a way that does not accidentally click on the wrong icon.
As with all things related to ALS, the process is an adjustment which is mostly about perseverance and patience.
Becoming the Catch of the Day
Finally, the last contraption is appropriate for the bucket list because it quite literally puts the patient into a “bucket.” In the end, the device is probably more helpful for the caregiver than the patient, though, to a large extent, it does alleviate the fear of falling.
The equipment is a lift that attaches to the ceiling. The patient sits or lays on the net with color-coded loops for the hands and feet. The caregiver hooks the arms into place and then crosses the lower straps under the legs in an X-shape to strap the patient into what looks like a fishnet bag.
Once “bagged” into the air-lift bucket, the caregiver presses a button and literally raises the patient above to transfer. For the patient, it looks very much like a fisherman hauling in his catch for the day, though it has to be considerably more comfortable for a fish.
The netted human then glides about six feet across the ceiling of the room to lower the “victim” to his destination – the wheelchair or sitting chair.
It’s an “uplifting” feeling to be sure, though not exactly the Webster definition of the word. Despite that, the process is a great source of amusement for observers on the ground.
Perhaps the best way to describe how it looks is to imagine being at a cargo ship dockyard. The patient, of course, is the cargo.
Over the past week, getting out of bed has become a totally new adventure, there are several conclusions I have reached. For instance, I now know that my name is little more than an acronym for “Big Old Basket” (B.O.B.)
Another is that when I am ultimately called to the big lift in the sky (which I hope is considerably more comfortable), I am going to will my body to Dancing with the Stars. My hope is they cover me with thousands of pieces of reflective glass. Turning me into the world’s largest mirror ball.
About the Author:
Bob Taylor is a veteran writer who has traveled throughout the world. Taylor was an award-winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.
Taylor is the founder of The Magellan Travel Club (www.MagellanTravelClub.com)
Editors Note: Support Bob’s GoFundMe to give him a hand up
Featured Image: Photo by Quang Nguyen Vinh from Pexels – https://www.pexels.com/photo/photo-of-people-on-a-boat-during-dawn-2150371/