I have posted this before, sometimes I am reminded that although I use humor to cope there is a very dark side to ALS.
As persons and caregivers with ALS, you already understand this and don’t need reminding. However I write so others can get a glimpse behind the three letters.
While laying in bed last night waiting for my meds to kick in and put me into a chemically induced slumber I was reflecting on my condition. I came to the realization that ALS is just like another condition but only in reverse.
Allow me to illustrate.
Imagine The Following…
Many of you have seen this scene play out on many a motion picture and television shows. A loved one lays in a bed in a coma, surrounded by those closest to them and a robust medical team. When all of a sudden someone in the room notices a little twitch in the patients toe or finger. Everyone in the room comes to life realizing that this is the first sign of life they witness in their loved one. The scene continues, perhaps in multiple time sequences ultimately leading to the patient regaining consciousness followed by their speech and regaining movement. Followed by either a miraculous full recovery or arduous Physical Therapy, a recovery none the less.
This is where it gets dark, in my opinion. Imagine the reverse of a coma. You have all of your faculties and you slowly begin to notice the loss of motor function, it begins with a twitch somewhere in your body. Followed by loss of fine motor function leading to complete loss of the ability to move your extremities. Arduous physical therapy has no effect on your progression, in fact it can actually be detrimental. Range of motion exercises are essential though, in order to keep some flexibility in the joints.
As your condition progresses you lose your voice, your ability to swallow and ultimately your ability to breathe independently. All throughout this nightmare your faculties are still completely intact.
You are now completely immobile, surrounded by loved ones and a robust medical team. Dependent on them for your every need to include mechanical ventilation. If you are lucky enough to have the resources necessary to acquire an eye gazing computer you can still communicate with your surroundings.
So if you want to see a time-lapse of ALS all you need to do is play in reverse a program that follows a patient recovering from a coma…
In essence ALS is a reverse coma or a waking coma. Trapped in your own body, your body being both the perpetrator and the victim.
Sorry for taking a dark turn, I feel the need to share The Good The Bad and The Ugly.
Deep Thoughts From
The Juan and Only