You’ve been diagnosed with ALS, what next?

After the initial mind numbing reaction; you know, where your world closes in and you can’t hear a word. For a moment that is, until you regain your composure. Then the questions begin, emanating from your thoughts like a visible dialogue. Flowing like text messages, swirling through your mind, an indiscernible chorus.

What next? Information overload; what’s pertinent, what’s not? Who to ask, when, what to ask? You just want to scream!

You consume every nugget of information possible, mental indigestion ensues. A bloated mind, full of…questions. How will I progress, fast, slow, in between? What can stop, slow down or cure me? Is the twitching the precursor to losing my, arm, leg, hand or foot. Is the choking an indication I’m about to have my last morsel, lose my voice, or worse need a trache?

How, when, what, where? Questions, questions, questions, what are the answers?

I wish there were answers. answers to help you plan for decisions, to anticipate loss, the constant loss, the eventual final loss. Here’s the only truth of ALS; ALS afflicts anyone, in many ways, varying degrees and on different time tables. Some will say they know what loss is coming next, truly only the disease knows. Treatments, what few there are, work for some but not for all. Until there is a cure, ALS is our companion until we take our last breath, this is true.

There is no way around the above process, we all experience this.

What next?

Live your life.
Live your way.
Live the best you can.
Live!

TJ&O
(Juan Reyes)