ALS TEXAS DAD

Wide awake since 4:30, finally asked Meg Jankowski Reyes to get me out of bed at 6. Been a rough week, with nausea and upset stomach. Meds make me useless, hate that.

No breaks for terminal patients, still have to deal with random illnesses.

This month marks 6 years of living with ALS, 6 years. In retrospect, pretty sure it’s more like 7 or 8, took two years to get diagnosed. I’ve already exceeded the 2-5 yrs prognosis.

This brings me to a topic not often discussed in depth, survivors remorse. It simply can’t be avoided, especially when you meet and get close to so many amazing people. You don’t want it to be you, so you fight like hell; yet your heart breaks with every loss.

After 6 years, it can be deceptive to see me, a pathological optimist. I’m sure there are a few folks who wonder, “is he really sick?”, ” Is he still alive, but I thought ALS took you fast”.

My body is dying but my spirit is still kicking ass, that’s the only way I can put it. I still hate ALS and what it does. I hate that I must depend on others, for something as simple as getting out of bed. Yet I do depend on the grace and love of others to live. How can this not make my heart swell.

Yet I am on the same path as those we’ve lost. I mourn their loss but I honor their lives by embracing mine, in spite of ALS.

I hope my fellow pALS can do the same, if not…that’s ok, you are still loved.

TJ&O

These two go hand in hand, in more ways than the obvious. Yes eventually every person with ALS succumbs to loosing their ability to speak. So how is silence in other ways associated with ALS?

Nowadays patient voices are being heard globally due to technology and social media platforms. However in the past patient voices were lost the moment their ability to speak was gone. Their story fell “silent”, their families unaware of the soul shattering silence and hopelessness felt. Hidden behind eyes that observed everything and a mind comprehending all.

ALS is bereft with silence, from patients and families that won’t discuss it. There are many who quietly and privately disappear from life, it is their right to do so. Then there is the deafening silence from the FDA on treatments. Oh that’s right they spoke very clearly when they disapproved two promising treatments.

ALS patients, families and advocates are now breaking the silence. A rising chorus can be heard as it crescendos; it will only be silenced by a cure.

Listen, behind our eyes is our story, can you hear it in our silenced voices.

TJ&O

I hate ALS!
I effing hate it!

It takes and takes.
It even takes shit you’re not good at.

I love golfing, was I good at it? Hell no! But it was my choice to torture and embarrass myself in front of my fellow duffers.

ALS has taken this from me.

I will never learn to play guitar or piano. I may have been destined to be phenomenal, alas the world will never know, 😢.

I was a good walker also; I could walk from here to there. I could even walk over yonder, wherever that is. But no, ALS had to take that.

Good, bad, it doesn’t matter what you’re capable of, ALS will take it… selfish prick!

TJ&O

ALS and your Ass.

Did I get your attention!?

Here’s the deal, when you sit all day in a wheelchair the quality of the seat cushion is crucial. Not just for comfort, obviously, but to prevent pressure sores. This is the true and more serious reason of the two.

The standard, that I’m aware of is the brand Roho. OMG, what a difference, my toosh is happy. My original cushion sprang a leak and the replacement arrived today.

Ahhhhh… Heavenly

Here’s the reason it’s so comfy; it is comprised of 2″x2″ individual air bladders and is adjustable. It’s also custom fitted to the seat of the wheelchair. It can accommodate: mini-toosh, average toosh and above average toosh.

Yes it’s comfortable, however it is medically necessary, I can’t risk cracking my ass.

Have a good ass day!

TJ&O

We all have a part in the fight to end ALS! Each one of you pALS & cALS is my Battle Buddy on the Field of Battle!

ALS and feelings of inadequacy…

Having physical functions taken from you can be emotionally devastating. This is only compounded by feelings of inadequacy.

We know its not our fault, but these feelings emerge as we are able to do less and less for ourselves. Many retreat into just existing, more or less because it takes everything to just exist. There are some who take on the mantle of ALS Champions, boundles energy and drive. Most of us fall in between the two above. Doing what we can for ourselves and others, perhaps locally, perhaps beyond.

However the inadequate feelings pop up, most often, respective our families. Its very, very hard to sit by and not be physically engaged. Thank you for saying, “but your here, thats what matters”, it is important, but it’s still painful.

Most of us power through it most days. Our minds are in tact, so we think, collaborate and initiate movements in an effort to be more than a fading human.

I try to do my part but I do get overwhelmed. I am in awe of patients and caregivers that have the capacity to move in the stratosphere of advocacy. Thank you for your efforts to affect positive change for all suffering ALS.

Its ok to focus on yourself and your family. This is “the” most important factor. It’s also normal to feel inadequate, just know that what really matters is that you are present with and for your loved ones.

TJ&O

6 years (October 14)
2180 days
He said, “you have ALS “
I heard, “your dying”

Not a day goes by that I don’t reflect on this exchange. 2-5 years is the prognosis, quite a sobering thought, right? So am I now on borrowed time, aren’t we all. ALS continues to take from me; hands are useless, voice is faltering, legs can still support me and my breathing is adequate.

ALS has drastically altered the course of our family’s life, adapt to live. Most importantly requiring us to open our hearts and minds to others. Others in the sense of those also afflicted and also to support and assistance offered and given. Our paths have intersected with others whose life inspires us; strength and resilience that is both infectious and driven. Driven to create a world without ALS.

We have also experienced profound los, for this disease inextricably intertwines our life to others and their loved ones. Extending our family well beyond blood, impacting our very souls.

So today I don’t observe the anniversary of receiving a fatal diagnosis. But instead the day I was bluntly told by the universe, live you fool, the choice is yours. Yes it is extremely painful and difficult to lose all physical abilities, to be left wit only your mind and eyes to engage with the world. Voiceless, breathless, motionless contemplating the world as it continues to move as always.

To be honest it’s just another day, but that’s the beauty of it, I’m good with just another day.

The Juan and Only

In honor of Hispanic Heritage Month, reposting this interview about ALS or ELA.

https://m.facebook.com/story.php?story_fbid=10222382367821379&id=1633384899&sfnsn=mo

Do YOU know what ALS is?

60% of Americans haven’t a clue what it is.

You mention Lou Gehrig, baby boomers know.

You mention Stephen Hawking, fans of The Big Bang Theory know.

You ask avid football fans who Steve Gleason is, they know.

You mention The Ice Bucket Challenge, a high percentage of chilled participants had no idea why they were actually doing it.

You see, most people suffering from ALS grow isolated; some by choice, most because its hard for others to pause and meet your new pace of life. It takes a great deal of effort and energy to actually get out there and advocate as a patient. Not to mention the effort by family and caregivers to help a patient be relevant to the cause.

So if you run across or meet an ALS patient know this; the sheer will to live, actually live with ALS, is a feat. Take a moment and learn what ALS is. How it takes everything from us. Most importantly learn that we are alive, present and still contributing.

Do you know what ALS is? I do.
If you have a moment I will tell you how I Live with it.

TJ&O

Howdy cow-poke, how’s life treating you today?

There are days when it feels like life is on an 8 second timer. You open your eyes, and just like the gate of a rodeo chute, life takes off. Bucking, twisting, turning, flying through the air. You have but one choice, find your rhythm and ride in unison with the beast.

Eventually it will buck you off, but not before it takes you on the ride of your life. Do you fight the thrashing or do you ride the twisting tornado? Do you adapt to the constant and sudden changes in direction?

8 seconds can and often feels like a lifetime. The success of your ride depends on your gear, your team, and your metaphorical grip on the flank strap. Most importantly your willingness to follow and respond to the beasts lead.

ALS…the longest ride of your life.

TJ&O