Living with ALS: A disease like North Carolina weather
CHARLOTTE, NC: I’m not sure what winter was like in the rest of the country. However here in North Carolina the past several weeks have been schizophrenic. It seems to happen every year about this time when the seasons are in transition. One day we are wearing gloves and thick jackets. The next day it seems that spring has arrived and everyone is in short sleeves.
I don’t think I can remember a year in recent history when the local news wasn’t doing a story about the effects of the weather on the peach crops in South Carolina.
Over time, what we have learned, of course, is that we have no control over the weather. We just deal with it until spring officially arrives and adjust accordingly during the interim.
ALS – my personal weather system
ALS is, in its own way, much the same as the weather. One day it does one thing and the next another, and the only way to keep your sanity is to make an attitude adjustment and get on with the day.
Looking back to the 1930s when Lou Gehrig brought ALS to the attention of the nation, it occurred to me that we are now living in an era that has to be regarded as the “friendliest” time in history for those who struggle with the disease. From electric wheelchairs to new drug therapies, there are things we have that Lou Gehrig could only dream about.
In the 1820s, Sir Charles Bell was the first to recognize progressive muscular atrophy.
Nearly half a century later, Jean-Martin Charcot described the condition and its pathology. Charcot gave the disease the name “amyotrophic lateral sclerosis” (ALS) , seperating it from other neurological conditions.
During his research, Marcot once wrote:
Let us keep looking in spite of everything. Let us keep searching. It is indeed the best method of finding, and perhaps thanks to our efforts, the verdict we will give such a patient tomorrow will not be the same we must give this patient today.”
ALS is a condition which fails to provide muscle nourishment in the lateral area of the spinal cord, leading to motor neuron death.
By the middle of the 20th century, a decade or so after the death of Lou Gehrig, technology took over. Life itself, not just the quality of life, became better for ALS patients.
In 1956, the first power wheelchair became commercially available thanks to the vision of George Klein.
The year before R.R. Stratton patented a non-manual lift which paved the way for less labor-intensive transfers.
In 1987, continuous positive airway pressure (CPAP) was combined with a nasal mask, allowing for what is now known as “modern” noninvasive mechanical ventilation.
By 1992, the bilevel positive airway pressure (BiPAP) ventilator came along to aid patients who were unable to tolerate the higher pressures of CPAP.
Today there are also communication advantages, ranging from e-readers to electronic eye gaze communications as well as voice recognition technology.
At the risk of providing too much information or describing personal aids that are of a less tasteful nature, ALS patients can also give Kudos to Delmas E. Collins who invented the bedside urinal in 1970. For anyone who has not had to deal with the discomfort and undignified prospect of a normal bathroom routine, Collins simple and inspired creation is a godsend.
In short, imagine dealing ALS when it was unknown or even defined as a disease, much less understood.
When Lou Gehrig was diagnosed none of the above inventions existed that would have been useful to combat his condition.
Life is challenging enough, even for those who are “healthy.” Perhaps the best way to manage the struggle in dealing with ALS is to think of it as the “Weather Disease” and deal with it accordingly.
Until that glorious day when a cure is developed, we can only hope the innovations of others will continue to manifest in ways that make Living with ALS more tolerable.
Here’s hoping for more sunny days than cloudy ones in the future.
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 founder of The Magellan Travel Club (www.MagellanTravelClub.com)
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