Invisible forces. The cruel underlying germs of degeneration that seem to have permeated my body and mind continue to do damage to both. What people see doesn't begin to explain all of the effects of ALS. I continuously battle unseen challenges as I sit, silent. Let me explore some of these lesser known attributes of the disease. I say lesser known because I'm fairly certain that most victims as impaired as I don't have the stubborn drive to communicate at all costs the pedigree of full blown Lou Gehrig's Disease.
I'm unable to :
control my breathing between my mouth and nose, causing a problem when blowing, coughing, inhaling, exhaling, chewing, swallowing and talking.
Swallow completely, which causes constant concern when eating.
Swallow naturally, which makes the act "on demand" only.
Control clonising in my legs, brought on by a bump, mental agitation of any kind or as a sign of a more serious problem.
Enjoy eating like I used to.
The list of minor annoyances and frustrations seems to be endless. I feel as if I'm slipping, ever so slowly, down a decline strewn with twitches and thatches of added complications and discoveries, certain to blur any view of my end game, certain to confuse my motivations, always smoking the path to my destiny. I'm a mute runner who cannot run, now blind as well.
I find it too difficult to expose all of my little defects in one writing. I must sprinkle a few at a time so as not to overwhelm myself. Over time, with enough information, perhaps a paradigm can be assembled from which others may better understand the inner struggles of an ALS junkie such as myself.
Every swallow must be premeditated. Every breath must be calculated. The leading killer of us is related to respiratory issues. As my diaphragm weakens, I am able to take in less air. Eventually, I will not be able to breathe on my own. I have chosen not to be put on a ventilator. Let's hope my stubbornness extends to physiological function.
In order to avoid negative reviews, I'd like to say that today I'm happier than yesterday, hopefully not as happy as tomorrow and certainly happier than last year.
Expect me to get back to my childhood memories.
I'm unable to :
control my breathing between my mouth and nose, causing a problem when blowing, coughing, inhaling, exhaling, chewing, swallowing and talking.
Swallow completely, which causes constant concern when eating.
Swallow naturally, which makes the act "on demand" only.
Control clonising in my legs, brought on by a bump, mental agitation of any kind or as a sign of a more serious problem.
Enjoy eating like I used to.
The list of minor annoyances and frustrations seems to be endless. I feel as if I'm slipping, ever so slowly, down a decline strewn with twitches and thatches of added complications and discoveries, certain to blur any view of my end game, certain to confuse my motivations, always smoking the path to my destiny. I'm a mute runner who cannot run, now blind as well.
I find it too difficult to expose all of my little defects in one writing. I must sprinkle a few at a time so as not to overwhelm myself. Over time, with enough information, perhaps a paradigm can be assembled from which others may better understand the inner struggles of an ALS junkie such as myself.
Every swallow must be premeditated. Every breath must be calculated. The leading killer of us is related to respiratory issues. As my diaphragm weakens, I am able to take in less air. Eventually, I will not be able to breathe on my own. I have chosen not to be put on a ventilator. Let's hope my stubbornness extends to physiological function.
In order to avoid negative reviews, I'd like to say that today I'm happier than yesterday, hopefully not as happy as tomorrow and certainly happier than last year.
Expect me to get back to my childhood memories.
Welcome back! You still possess indomitable spirit, so keep on keeping on!
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