CHARLOTTE, NC: When I was in high school one of my English assignments was to create a science fiction story. My essay was called Tunhceeb, the Babyland Planet. Looking back, it would have made more sense to name my fictitious world “Rebreg” (Gerber in reverse) because it would have been easier to pronounce, but we all know what they say about hindsight.
The premise of my idea was very similar to the 2008 film The Curious Case of Benjamin Button, in which the main character, played by Brad Pitt, begins aging in reverse.
ALS – Reverse Aging
In its own peculiar way, ALS is similar to that process. As the disease progresses, patients gradually revert to that time in their lives when they were dependent on everyone. Dependent for everything from eating, dressing, going to the bathroom, mobility and the like.
The only difference between now and back then is that infants have no sense of their helplessness.
I have written about the “village” aspect of ALS in the past as the patient requires increasing amounts of assistance from primary daily help to secondary aid to what one ALS sufferer terms as “cameo” appearances.
Quality of life is the main pursuit or at least some semblance of comfort.
ALS patients, even at the time of diagnosis, begin with a high percentage of independence that gradually diminishes until complete dependence is the result.
The bittersweet feature of the process is that the ability to think and use your brain is unaffected while, at the same time, that awareness means you know exactly how you are being affected during every stage of the process.
Caretaking requires more than the physical aspects of the battle. It also includes emotional support, assistive devices and financial resources. For example, a Canadian study recently determined the average annual cost burden for an ALS patient/family is $19,574.
The key to understanding the plight of the patient is anticipation which is also a difficulty for medical professionals because, like snowflakes and fingerprints, no two ALS cases are alike.
With ALS “one size does not fit all.”
One thing is guaranteed, patients and their families will be bombarded with advice and suggestions from outsiders, both professional and non-professional. It’s important to keep those ideas in perspective meaning that the most important thing a patient can do for him or herself is to be a knowledgeable, vocal personal advocate for their individual condition.
In my own case, I have had a machine for many months called a ‘cough assist’. I have been told frequently that I need to use it twice a day. That is once in the morning and again at night. The device expands your lungs and aids in respiration while minimizing congestion. A single treatment takes less than five minutes so it is not an intrusive procedure.
After being told on numerous occasions to begin this process, I determined that I should at least make the effort.
I must say that, afterward, my breathing is better.
Also, I feel less need to cough following each session. So I increased my treatments to the prescribed number of twice daily.
Not long after, I began to notice that my throat was raspy and I was beginning to lose my voice. Being unable to speak is a common disability with ALS. Nonetheless, I thought I was simply entering a new phase of adjustment.
It wasn’t until I stopped using the cough assist for a couple of days that I realized my voice was regaining strength.
Hence a new dilemma; do I keep using the machine to help with my breathing or stop using it to protect my voice? In this case, I am the only one who can decide what is best at this phase of the process. Medical professionals are not able to relate to my individual requirements.
Therein lies a perfect example of ALS frustration.
Each ALS patient knows only too well that they must establish their own “village” that supplements their particular needs. While remedies do emerge from every corner of the universe, many may actually serendipitously spring from unlikely sources when you least expect them.
Trial and error now becomes a daily task rather than an optional exercise.
For family caregivers, tensions can, and do, easily increase with time and progression. When taking care of helpless infants, the mother or father is in control and the child cannot fight back. Yet.
In the case of an ALS patient however, the fly in the ointment is the patient is older. And he or she typically wants things done as they personally would do them. Not in the manner in which the caretaker does them.
Typically such things are meaningless in the scheme of daily living but they do mount up over time and the patient then becomes demanding without trying to be a burden. At the same time, the caretaker feels unappreciated and so, as deficiencies increase so, too, does the stress.
The next step for me is the world of velcro. Buttons and zippers are no longer my friends.
It will be an experiment at first, to rip rather than zip, but if it works, we will adapt once again and leave Benjamin’s buttons behind.
About the Author:
Bob Taylor is a veteran writer who has traveled throughout the world. Taylor is 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