What is that Juan?
Thanks for asking, let me see if can illustrate.
Unbeknownst to the person later diagnosed with ALS, their body has in fact been on borrowed time. You see ALS does not announce itself, it creeps in and disguises itself as many other conditions. Thus the reason for a protracted diagnosis, for the majority of persons.
The diagnosis is simply when one is made aware of being on the ALS Clock. But what is the ALS Clock?
I’m sorry to say, I do believe you have ALS.
We need to tell the kids and our family.
My powerchair arrived, I’m so relieved, that last fall was not fun.
Hands are done, what’s next?
How do you mark time since diagnosis?
There is no right or wrong answer, I assure you it’s done with many factors by all of us. The tendency is to focus on milestones, such as those above. Major changes in our physical abilities, loss of function and large equipment delivery. Or by the passing of yet another beautiful soul. Time is the one thing that all people have in common, we each mark it in our own way.
With ALS, in more advanced people, it is quietly marked by rhythmic tones from medical devices. These devices marking time while they generate time for us, ultimate codependency.
Our eyes follow all activities around us, marking time with every move, the caregiver dance; which demands more from the soul than the body. A dance comprised of constant vigilance, constant movement and an occasional breath.
The fickleness of time; unfortunately it doesn’t afford the same courtesy to all suffering from ALS. Some get more than others for reasons unknown. So what to do…?
Savor and cherish every minute, every moment, every day. Painful, uneventful, good or bad, a moment is a moment. Take it in, reflect, wait for the next one… Repeat.