I apologize in advance if this makes anyone uncomfortable. But the fact is that ALS is not a nice condition at all, It is unrelenting.

This morning turned out to be CRAPPY… literally. You see as the condition progresses you begin to slowed down considerably, this applies to everything. All your movements are very calculated and take considerable concentration. Your brain is sending the message to your extremities but your extremities behave like petulant children, they just won’t listen. This includes being able to get in and out of your wheelchair if you are still capable of doing so.

This is where it gets interesting. If and when you experience intestinal issues it is difficult for a normal person to make it to the facilities if the issue is urgent. This is compounded when you are transformed into a human Sloth. This ultimately results in an embarrassing and humiliating situation. Yes it is uncomfortable for everyone involved. However this is to be expected and requires the patient to surrender to the condition. This is not to be confused with giving up. Simply that one has to put aside their pride and accept the fact that The New Normal is ever-evolving.

For pALS in more advanced progression this essential function can turn into an actual medical concern. As the body looses movement it effects so much more than we are aware of. For many, irregular bowl movement can develop into a true medical emergency. Requiring less than comfortable interventions.

Gastrointestinal health becomes yet another concern for the care team to monitor. Experimenting with solutions until the right one is found. Jst one more issue to contend with in the laundry list that comes with ALS.

After any such episode all one can do is be thankful for Fabreze, medical gloves and baby wipes.

I know, TMI!

ALS doesn’t really give a damn about anyone’s sensibilities. Appreciate your ability to perform your “doodies” unassisted… That’s all I got to say about that!

The Juan and Only

There are times in our lives when we realize that we are smack in the middle of something big. Sometimes the realization is gradual, sometimes it’s a slap in the face. Which ever it is when you realize it, it can be humbling.

Unbeknownst to me when diagnosed with ALS was the orbit I was being propelled into. This disease has brought so many incredible, brave and inspiring humans into my personal bubble. How could I have gotten so lucky to be in such amazing company. These people run the gambit from pALS, cALS, family, friends, Dr’s, nurses, researchers, advocates and beyond. One common thread connecting all… ending ALS.

Collectively we collide, generating energy that propels each of us on our quest. A quest to vanquish, or at the least tame this beast, ALS. Each soul bestowed with weapons unique to each: Knowledge, Empathy, Resourcefulness, Strength, Sacrifice, Tenacity, most of all Love for others. With these weapons it is possible to accomplish our quest.

We fight this beast with every ounce of energy, often to exhaustion; always with our last breath. Does this deter us? NO, it does not, it emboldens us and those surrounding us. I am humbled to be in your company every single day.

Let’s collide! Let’s generate so much energy that ALS has no where to hide. A collision of souls, unified with a single goal in mind…

Obliterate ALS!

TJ&O

May 2021
Post 2

ALS, what is that, isn’t it some old person disease?
Didn’t it get cured after the ice bucket challenge?
No it’s that disease that scientist had, right, Stephen something?
Nah it’s genetic, you only get it if it runs in the family, right?

What do you think? Which statement above is true and which is not?

1. It has not been cured, in fact there are two medicines that slow it down (not by much), but no cure.
2. Stephen Hawking, Lou Gehrig are synonymous with ALS.
3. 90% of cases are random, RANDOM, the remaining are or can be genetic (familial ALS).
4. It can strike anyone, at any age, any race. Fact: Juvenile ALS has been recently created as a category, why? Children are developing ALS.

ALS does not discriminate, it strikes every race, every socioeconomic category; however it effects Veterans twice as much as the civilian population.

Some notable individuals who have passed of ALS:
Lou Gehrig (MLB)
Stephen Hawking (Scientist)
Sam Sheppard (Actor/playwright)
Stephen Hillenburg (Spongebob creator)

There are quite a few athletes afflicted by ALS, Veterans, First Responders and so on. When someone passes of ALS, you don’t normally hear of it unless it’s a celebrity. Typical of a nation consumed with celebrity idolatry, we mainline any and all news regarding celebs. So as hundreds pass of ALS in a given week, you won’t hear of it, unless the person was of notoriety. I would like to share a few whom I’ve encountered that are notable to me and their families.

J.t. Inocencio
Andre Williams Sr.
Dr. Walter Root
Rex Roberts
Magie Caballero
Greg Kenoyer

The individuals above personally touched my life as examples of persons Living with ALS. Inspiring me and compelling me to honor them by living life fully. Their memories live on in their families hearts and in mine.

Remember ALS doesn’t give a single care about status, wealth, power or influence. ALS takes who it wants, when it wants.

TJ&O

Esta entrevista occurio ase dos años. Copartela en sus redes sociales por favor.

Watch “El Show de Frank Gonzalez_S1Ep43” on Vimeo: https://vimeo.com/361149494?ref=em-share

Dear ALS:
May I introduce myself, I am one of your afflicted, and I simply wish you to know that I don’t blame you. You are in fact, not a being, but you do have a presence that is palpable. I don’t believe I am able to forgive you at this point, there are just too many unresolved deep emotions and yes moments of anger. I know I need to, just not there yet.

ALS, you have challenged my beliefs, my resolve and yes my own mind. Incomprehensible is the word that applies to the devastation you cause. I, and everyone you afflict cannot begin to fathom why you must be so insidious. Your grasp on each of us is relentless, indiscriminately clutching at us. Your touch forever altering our life’s course and that of all in our orbit. Sending all of us careening, untethered from what anchors us. Many never finding their footing again, lost in your embrace.

Fear, uncertainty and physical confinement are your tools, breaking our hold on this life of ours. Every time you touch us you do more than take your pound of flesh, you ravish our spirit. When we least expect it, you have once again struck. What now? Our independence, our voice, our breath. We have nothing else to give, why must you be insatiable.

Even so, if I insist on expending what time I have on you, I rob myself of time with my loved ones. So if you must insist on taking without remorse, which is your nature. Then you do you, I will continue to rebuff you by any means and with every ounce of my being. Let this serve as notice, I choose to live in spite of your grasp. I know you will be at my side until the end, and that’s alright. I’m not going to feed you by getting angry, well staying angry I should say, I have better things to do.

Sincerely

The Juan and Only

I am one body in the ALS collective.
I am one voice in a melody of hope.
Hear our song, an unabashed plea for life.
Each verse unique to it’s author.
The chorus a universal call to act.
The bridge, wrought with gaps, incomplete.
Our song, our story, our life…

TJ&O

Written May 2016:

As I sit here and ponder my adventure set for tomorrow, skydiving. Thanks Lilly Garcia Cisneros for prompting me into this. Nathan and a friend of mine are joining me in solidarity. Meg Jankowski Reyes won’t, she said one of us parents needs to be on solid ground … LOL. Anyway, I am sitting here reflecting on my regrets, wishes and desires I come t realize I have never had a bucket list. I have wishes and desires but nothing to say I have to do XYZ before I leave this earth. You may be doubtful, but let me explain…

I was born in Mexico but have grown up in the greatest nation on Earth, the U.S. I met my soulmate in High School. I attempted pre-med and burned out magnificently leading to my proudest moment, enlisting in the Air Force. I was able to practice a very limited form of medicine in the Air Force as an Independent Duty Medical Technician (IDMT) and worked with some of the most talented and dedicated medical staff in the world. This also gave me an opportunity to be a Servant, Servant Leader, Mentor and Friend.

I have traveled a good portion of this earth: U.K., Scotland, Belgium, Luxembourg, France, Spain, Germany, Portugal, Rwanda, Uganda, Bahrain, Dhahran, Poland, Hungary, Bulgaria, Turkey, Italy, Austria, Greece, Amsterdam, Azores, Canary Islands, Gibraltar. Most of these with my wife, some where deployments.

In Bulgaria I was treated as a medical officer and was “forced” to drink during a mid day meal prepared by the Bulgarian Flight Docs mother, I couldn’t refuse. In Hungary I got drunk with an ex Soviet Officer, Pitsy Palinka(sp)! Had the best ever Sangria in Portugal. Treated like family by our Greek landlords and neighbors. Humbled by the strife in Africa but blessed by some of the most genuine and caring people I met there. I haven’t just traveled to these destinations I have lived and worked there.

I have been blessed to be married to my best friend for 27 years (30 yrs together), have an amazing son and was blessed with three beautiful children delivered to us through divine intervention, that’s just the way I see it. I was blessed to have had quite the character as my father in law and I won the preverbial lottery of mother in laws, love and miss you Tina Tyler.

So you see I have no need for a bucket list, its been a charmed life. I wish you the same, God Bless…

Video of my skydiving experience:
https://youtu.be/bfyQw-MkP1Q