Month: April 2022

Diagnosis ALS

Posted on by alstexasdad

Diagnosis: Amyotrophic Lateral Sclerosis,l, ALS, Lou Gehrig Disease.

What can you expect?
[Trigger Warning]

Symptoms already experienced (fill in blank).

Plus the following, eventually; timeline-varies patient to patient.

*Loss of limb function: finger’s, hands, arms and legs.
*Above leads to eventual quadriplegia.
*Loss of Speech
*Loss of swallowing
*Difficulty breathing, progressing to mechanical ventilation.
*Anxiety, Anger, Depression, Despondency.
*Challenge your faith, mind, soul, being, and that of your closest support system, your tribe.

Ok that’s pretty shitty, I know, more importantly you need to know.

Here’s the other side of the coin.
ALS will also do the following…

*Strengthen your faith, mind, soul, being and that of your support network.
*Take your breath away as you encounter some of the strongest, kindest, humane beings, others affected by ALS.
*Humble you, by showing you the true meaning of surrender and acceptance.
*Force you to stop or pause your life and learn to appreciate it and those surrounding you.

Sorry to be so blunt; ultimately how you adapt to your new ALS life is entirely in your hands, mind and attitude. Absorb and reflect on the bad, but anchor yourself on what you have not the alternative.

Find the balance you need, it’s unique to each of us, start by catching your breath.

TJ&O

Construct-ing Hope

Posted on by alstexasdad

I’m tired, just tired, more than usual. It’s mentally and physically exhausting living with ALS. I can only imagine how cALS feel, drained of life…yet you persevere. Every aspect of life falls on you, regardless of family composition; there’s always one in the family who rises to the challenge, taking the lead like a cALS General. You know who you are, and thank you… Thank You.

Still the weight of ALS presses down, some days we can’t bare it. Retreating into ourselves, taking a moment to discourse internally. When ready we surface, not without metaphorical bruising, aches and pains. How to embrace hope with a hopeless condition, that’s the core question. The solution only exists in you.

What drives you is unique to… you. What works for me may not work for you. Hope, like faith, is a construct of your making, based on what is important to you. My family is my hope; life is best when shared, in my humble opinion.

So put your hard hat on and get to construct-ing your HOPE. Even in hopelessness, there is “hope”.

TJ&O

Legacy of Loss

Posted on by alstexasdad

ALS, a single card in the deck, “00” on the Roulette, what are the odds; you get the idea. It’s Random, as random as it comes. For most that is certainly true. After genetic testing it does turn out I am as random as they come. This bodes well for my children, to say the least.

But what of the small percentage who’s draw from the deck is the same card generation after generation. Familial or hereditary ALS strikes upward of 10% of cases, leading to a legacy of Loss. Not being in this group I can’t imagine the weight this caries. I wouldn’t presume to know, but having engaged with those who are living with this form of ALS, I have observed this.

Resolve, two divergent forms of resolve that is. Both requiring unimaginable courage, the likes of which can’t be put into words..

Some are resolute in their desire to know, understand and expand the science of Familial ALS. Taking on the weight of knowing what is in store, offering their history and anything else to contribute to treatments or a cure. Diving into the deep end of ALS science and research. Living with the knowledge that the switch to activate ALS resides within their DNA. Resolute in their objective; end ALS!

The second form of resolve is completely in opposition of the first. Not oppositional in a combative way, but a different philosophy or outlook. This group of individuals doesn’t want to live knowing if they carry the gene(s) that trigger ALS. They already know it is a legacy the family has. However they want to live their lives unaltered by the knowledge. Should they develop ALS, they will confront it at that time.

Neither approach should be judged, but each have a profound effect on the families affected. One challenge both approaches share is, informing children, if there are any, or if this is a new development in the family history.

Here in is the dilemma; do you inform your children or siblings. If young, do you burden them with this knowledge? There are considerations to be weighed, best discussed with your medical team or a genetic counselor. This is truly personal and weight decision, not easy by any means.

I am deeply saddened by the legacy of Loss you have to endure. I pray a treatment, or better yet a cure, is developed soon to take away the weight of either existence.

TJ&O

Positivity

Posted on by alstexasdad

Why and how am I so positive, given that I have ALS. One of the cruelest, unrelenting, take everything one has, disease.

I wish I had an answer, I simply don’t. Am I in denial, one can not deny the obvious, my body is shutting down. ALS by any other name would have the same effect and outcome. Denial, no.

Am I delusional, perhaps, but I’ve always been a dreamer, always wanting to believe in the good we all can do. Spent 21 years caring for others and our nation. Delusional, you bet, one has to be in order to live with ALS.

I can say with certainty that what helps me is…
My wife
My children
My family
My friends
My care team
My fellow persons with ALS
especially my IAA comrades.

All of the above are “my” support, from which I draw strength to live with “our” ALS.

Have a blessed evening.

TJ&O

Ominous Portents? Nah

Posted on by alstexasdad

My wedding band fell off this morning, while I was being dressed…

Hmm, it just slipped off my finger.

What does this mean?

Well with ALS, only one thing, weight loss accompanied by atrophy. Regardless of rate of progression, there is in fact progression. ALS reminds you of it’s presence abruptly or subtly, like a ring slipping off.

I could dwell on this and lead myself down mental rabbit holes. Or I can move on, adapt and resolve this development.

It’s not some cosmic sign foretelling ominous portents. It’s just a loose ring.

Nice try ALS, but not today!

I’m heading out to get it sized, I’ll think of it as a tighter hug from my wife. So thank you ALS for the reminder that I am loved.

Have a great day all!

TJ&O