So you have ALS
What can you expect…
Last post we chatted about grief, let’s be honest with ourselves, ALS is a grief mill; it just churns out something to grieve about almost daily. Let me take your mind off grief for a moment.
But how, since it permeates my every thought?
Well, let me share the harsh reality of what you can expect as you progress. Don’t continue if you don’t want to know…
However your ALS started, limb, bulbar or both, slow or fast, you can expect the following:
Muscle atrophy, most noticeable in hands, shoulders and arms. Increased weakness to the point of failing, your limbs will cease to function. This will bring on bouts of anxiety, anger, frustration and lashing out. If left unaddressed this can lead to depression and beyond, which for some there is no return. This is just a fact, nothing about ALS is fair.
You will experience unimaginable fatigue; first with exertion then with the mundane, such as eating, talking, being dressed or of all things a BM, yes a BM. Every activity will take great effort and will eventually just not be possible. Oh yeah, I almost forgot, extreme temperatures will also effect you greatly.
Eating, breathing and speaking, all will be effected, if not already. Your options, should you wish to pursue them:
-NIV: None Invasive Ventilation aka BIPAP.
-Invasive Ventilation, tracheotomy
-Eyegaze: communication device that tracks eye movement and speaks your words for you.
–Letterboard: low tech communication board that uses a grid of the alphabet and eye movement
Now I know that I’ve painted a rather bleak outlook with the future of your progression, I’m simply not sugar coating it. However, as with any flip of a coin, there are two sides! Ultimately it’s both luck and choice, both require active participation. All of these effects of ALS can be mitigated with adaptations to your care. Many choose to implement all, some or none of these interventions. All options are personal and must be respected, thus the importance of honest and uncomfortable discussions regarding end of life wishes. Sorry, took a dark turn again, I’m trying to turn this post around and end on a positive note…but damned if ALS just won’t let me!!
Oh well, I will post a positive image to make up for it.
More to come…
The Juan and Only