CHARLOTTE, NC: It’s a proven psychological fact that men will not give up the remote, are mentally incapable of asking for directions and, generally, refuse to go to the doctor. After all, as long as we don’t see the doc, it’s a sure thing there is nothing wrong. Right? For us, its all about the health-care vs quality of life argument.
Women have a similar thought process with their shopping genes. “I just saved $150 by buying this pair of shoes I don’t need. They normally sell for $200 but they were on sale for half price and then I got a 50% discount on top of that.” Forget the fact that she has the same shoes (which have been worn only once) in the closet only in a different color. In her mind, we saved $150 rather than spent $50.
Chronic Illness is time-consuming
Living with ALS changes many of those ideas rather quickly. Among the first things you learn is that having a chronic illness is time-consuming. There’s no way around it. The world either moves in slow motion or the patient gets into trouble trying to do things too quickly.
The corollary to that comes down to “quality of life.” ALS is a continuous attempt to live normally when life is no longer normal.
Among the recent medications that slows the deterioration of the nervous system caused by ALS is something called Radicava. Theoretically, it prolongs a person’s life, but the catch is that it requires a one-hour daily infusion for 10 days out of each month for the rest of your life.
To my mind, that is a limitation on my quality of life and being able to have the independence to live as I desire. For me, to paraphrase the soup Nazi, “No radicava for you.”
Finding what works best for you
The best way to approach changing health issues is to determine what works best for you and go from there. One ALS patient was concerned about bone density tests until she checked with her ALS clinic.
When she talked to the neurologist, the doctor reminded her that eventually, she would come to rely on a wheelchair and the inactivity alone would cause bones to become increasingly brittle. Thus, since there was no longer a need to monitor the decline, bone density testing was taken off the chart, thereby reducing the time needed for an unnecessary procedure.
Some things that used to be routine however, suddenly become vitally important for patients such as dental exams, eye exams and immunizations.
Reducing the risk of gum disease for example, can reduce the chances of lung infections. Regular eye check-ups are important for having good vision in order to prevent falls. Immunizations speak for themselves.
Adjusting your health routine
Whether we are dealing with ALS or not, seniors frequently have moments where they lose track of what they were saying. It’s amazing to me how often these days I stop to think and then forget to start again.
Some people might ask, “Well if you have ALS and the result is inevitable, why bother to adjust?”
The answer is simple really. It isn’t just a matter of fighting a losing cause so much as it to extend your longevity for as long as possible. Looking forward in order to keep a positive attitude. Being positive has been proven to be medically advantageous to an immeasurable degree.
One of the difficulties with ALS as the disease progresses is excess saliva which can lead to drooling. I call it the “Komodo Dragon syndrome.” But without the deadly venom.
There are drugs which help to control it, but there is also the added factor of having to deal with something completely new that is often embarrassing.
That’s just part of the process.
Considering the quality of your life
As mentioned it all boils down to the quality of life in relation to what is important to the individual who is coping with ALS.
Whatever makes sense for the individual ALS patient should become the course of action that is taken. It is their life, so allow them to determine what “quality of life” means to them.
Caregivers, be they friends, neighbors, relatives or professionals, should always be aware that an ALS patient can be easily overwhelmed by simple decisions because they are constantly dealing with mental processes that can be exhausting.
For myself, I find I often become irritated and weary from listening to advice from well-meaning people about what I should and should not do in my quest to battle the disease.
ALS affects the body, not the mind.
It may sound ungrateful, but when a person is bombarded with daily suggestions about this idea or that, many of which have already been taken into consideration, it can become overly tiring.
That said, there is a fine line between legitimate assistance and not offering any aid, and that becomes tricky for those who are trying the help ease the situation.
The one truly accurate observation I have made since my diagnosis with ALS is that for all of the research and money that has been spent seeking cures for any and all debilitating diseases, it is an absolute fact that people who have the most birthdays, live longer. Quality of life.
Lead Image: By Earth Touch on Flickr ( https://www.flickr.com/photos/earth-touch/9368684765 Attribution-NonCommercial-ShareAlike 2.0 Generic (CC BY-NC-SA 2.0)
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