I have posted this before, sometimes I am reminded that although I use humor to cope there is a very dark side to ALS.

As persons and caregivers with ALS, you already understand this and don’t need reminding. However I write so others can get a glimpse behind the three letters.

While laying in bed last night waiting for my meds to kick in and put me into a chemically induced slumber I was reflecting on my condition. I came to the realization that ALS is just like another condition but only in reverse.

Allow me to illustrate.

Imagine The Following…

Many of you have seen this scene play out on many a motion picture and television shows. A loved one lays in a bed in a coma, surrounded by those closest to them and a robust medical team. When all of a sudden someone in the room notices a little twitch in the patients toe or finger. Everyone in the room comes to life realizing that this is the first sign of life they witness in their loved one. The scene continues, perhaps in multiple time sequences ultimately leading to the patient regaining consciousness followed by their speech and regaining movement. Followed by either a miraculous full recovery or arduous Physical Therapy, a recovery none the less.

This is where it gets dark, in my opinion. Imagine the reverse of a coma. You have all of your faculties and you slowly begin to notice the loss of motor function, it begins with a twitch somewhere in your body. Followed by loss of fine motor function leading to complete loss of the ability to move your extremities. Arduous physical therapy has no effect on your progression, in fact it can actually be detrimental. Range of motion exercises are essential though, in order to keep some flexibility in the joints.

As your condition progresses you lose your voice, your ability to swallow and ultimately your ability to breathe independently. All throughout this nightmare your faculties are still completely intact.

You are now completely immobile, surrounded by loved ones and a robust medical team. Dependent on them for your every need to include mechanical ventilation. If you are lucky enough to have the resources necessary to acquire an eye gazing computer you can still communicate with your surroundings.

So if you want to see a time-lapse of ALS all you need to do is play in reverse a program that follows a patient recovering from a coma…

In essence ALS is a reverse coma or a waking coma. Trapped in your own body, your body being both the perpetrator and the victim.

Sorry for taking a dark turn, I feel the need to share The Good The Bad and The Ugly.

Deep Thoughts From

TJ&O

(Juan Reyes)

Reposting, why, because I can.
More importantly, because the public needs to know the caregiver strife.

This morning as I sat here enjoying my coffee I’m reflecting on Caregivers. The reason, something shared yesterday.

The heartbreaking reality caregivers face, all of them, however with ALS it’s compounded by the sheer total care required eventually. Regardless of your background as an ALS caregiver you will be challenged.

The first challenge, the knowledge of your loved ones condition. This is followed by a slew of others, such as knowing what questions to ask, when to ask them and to whom. There is so much information to digest, what do you choose to consume and when?

What really caught my ear and heart yesterday was one aspect that becomes second nature to all caregivers, becoming self taught… (Fill In The Blank).

You name it, as daunting as it is to care for an advanced stage ALS patient, a family caregiver WILL be required to garner a modicum of medical equipment and care skills in order to help their loved ones continue to live.

A short list of what a caregiver becomes:

Nurse, medical assistant
EMT
Counselor
Lay Minister
Respiratory Therapist
Physical Therapist
Occupational Therapist
Nutritionist/dietitian
Holistic practitioner
Geneticist
Researcher
Analyst/statistician
Pharmacist
Taxi driver
Logistician
Advocate
Mom, dad, parent, sibling, friend
Medical equipment trouble shooter

I’m sure I missed some, but you get it.
The burden on a caregivers shoulders, the weight of it is not visible to us, butt they feel every bit of it. Often they just cary on never asking for a hand. Most often to their own detriment.

Reach out to a caregiver today, they may not realize they need YOU!

TJ&O
(Juan Reyes)

Existing medical practice in the treatment of ALS has been, and please excuse my bluntness; “go home, be comfortable and die”.

For too long this “prescription” has been the standard. Yes it is a stark reality that this in fact is our prognosis. As a community, as patients, as individuals, we deserve better. Slowly this mindset is changing, slowly.

It’s time for a new prescription!
A prescription that doesn’t require refills, one that has positive side effects. This prescription is approved and endorsed by 5 out of 5 pALS/cALS.

This prescription is a compound, comprised of several elements:
Love
Understanding
Compassion
Self Care
Patience

This prescription is administered PRN (as needed). It does not require approval, co-pays or even a trip to the pharmacy. Regular doses have been known to cause effects such as: Hope, Empathy, Smiles, Joy, Laughter, Heightened Sense of Adventure, Compulsive Behavior that may lead to living out loud. Should you experience these effects, “Don’t Worry Be Happy”.

This compound does not require FDA approval, not that they would. This prescription does not work effectively for individuals with the following conditions, (have been known to have delayed or no response): Severe Grumpyness, Intense Stubbornness, Chronic Selfishness and General Bad Mood. **Additional doses may be required for the above conditions.

Have you had your dose of Love today?

TJ&O
(Juan Reyes)

Raise your right hand and repeat after me: I (name) do solemnly swear…

Throughout history this oath has been repeated time and time again by everyone with the title “Veteran”. An oath to stand side by side with our brethren during times if conflict and peace. We sacrifice family, memories, our bodies and often our lives… for our nation. More importantly for each other, our brothers and sisters in arms.

After our service, whether a term or a career, we hope our service and sacrifices will be rewarded with a good long life. A life we create with the rights and privileges our nation guarantees, through our sacrifices.

What then, when something threatens the life we planned? We turn to the organizations charged with meeting our needs. For the most part they do, however there is always room for improvement. One such threat that eludes resolution is Amyotrophic Lateral Sclerosis, ALS, also known as Lou Gehrig’s disease. A disease without cure or effective treatments, that strikes veterans significantly more often than non-veterans.

So elusive is ALS that the reason or cause of the exponential rate of affliction of veterans escapes all experts. The current treatment plan for ALS patients is and has been palliative in nature. If I may be blunt, this simply means go home and die comfortably.

This is unacceptable! We do not surrender, we do not turn and run. We charge forward, facing the enemy head on, until all we have left is hand to hand combat. With ALS we are in a fight for our lives, engaged in combat with our own bodies and minds.
A new battlefield, a battlefield wrought with landmines that take limbs as if they were actually blown off. The mental toll building every day as our body shuts down, until our mind is all we are left in control of. This is not the life we hoped for.

This new battlefield is an unfamiliar landscape, one comprised of bureaucracy, obstacles and uncertainty. We grapple with an enigmatic enemy within, while also battling institutions charged with helping us. Navigating a maze of fractured institutions much like being sent outside the wire without the coordinates to the target or the necessary weapons to execute the mission.

The sad and disappointing aspect of this new war is that we know there is an arsenal within reach. Yet this arsenal is withheld from us. How can we execute a successful mission with our hands tied? Without the weapons designed specifically for this enemy, ALS. Will our nation stand by as we venture into this new battlefield? What would our nation say or do if it’s service members were deployed to conventional warfare without weapons?

Veterans are being sent into battle with ALS without weapons. We are simply being told; There is your objective, now defeat it without any weapons.

The I Am ALS Veterans Team is diligently working to change this. As ALS is a multifaceted disease, so the Veterans Team is using a multifaceted approach. As a team comprised of veterans with ALS, family members and advocates, it is focused on equipping veterans with the right arsenal. Allowing us to have a fighting chance to defeat the ever elusive enemy… ALS.

TJ&O

(Juan Reyes)

https://iamals.org/action/veterans-affairs-team/

I’ve noticed many comments about feeling guilty for some caregivers regarding their loved ones. This is for you…

🌻🌻🌻🌻🌻🌻🌻🌻🌻🌻🌻

It’s not your fault…

My ALS is not your fault, so don’t take that burden on. Neither is my personal outlook regarding this disease; good, bad or indifferent. I do know that my affect effects our daily life and that of our family. To be honest you are my anchor in this tumultuous see called ALS. Even when the waters are calm, ALS has left us rudderless.

This fear that consumes me, let’s be honest, I can’t put into words, so it manifests in other ways. For this I ask for your patience and daily forgiveness. Some days the fear is a beast that I unknowingly unleash on you.

Let me end by saying this: I can not endure this without you or your love. Your ability to see through the fear and still perceive my love for you is a testament to your kind soul, THANK YOU!

You see none of this is your fault, it simply happened. But I’m thankful for you.

TJ&O
(Juan Reyes)

It takes love to survive ALS, well no one survives it, ok… to endure ALS. Love not just of family, but of friends and the community. Sometimes even though love is needed; cALS of obstinate pALS know this all too well, lol…you know who you are.

Yes there those who believe in their hearts that love is too painful to endure and shun it. Don’t stop loving them, in the end they will realize you never stopped. The fact that you endure ALS secondarily with love in your hear, this is the foundation of your resilience.
Strength and courage to continue take root on this foundation.

Love is not exemplified by grand gesture’s, no, it is in fact represented in the mundane.

In the blowing of a snotty nose, after a sneezing episode.

In the helping after toileting, while making light of such a personal aspect of life.

It’s the fierce advocate that surfaces when needed; to ensure every ounce of dignity is retained.

It’s the last touch before we are cured of ALS…

That’s what love is!

TJ&O
(Juan Reyes)

In honor of Hispanic Heritage Month…

A madresita learns her son has been diagnosed with ALS. Not knowing what it is she consults her commadres (her social group). They recommend the best Curandero (Shaman) in the community. Your son needs to be cured of the Ojó (evil eye).

The Curandero shows up at the appointed time, prepared to cast out the evil befallen the son.

What will you do to cure my son? Asked the concerned madresita.

First I will pray to the saints and ask for their divine assistance. Then I will chant ancient prayers as I bless your son with an egg, drawing the evil into the egg, curing your son of the ojó once and for all.

Now Señora, what did you say your son was diagnosed with?

They said it was the ALS.

Oh, Señora this is bad.
Wit the ALS I will need more than a dozen eggs, I think!?

TJ&O
(Juan Reyes)

On behalf of all pALS and cALS everywhere.

You look at me and ask yourself; they look angry, I wonder why? Then you look back and you notice a smile, such a mixed bag of emotions. ALS is a condition that challenges not just our body but our minds and our emotions.

Many if not all of us p/cALS have a roiling wave of anger just below our outward affect. Many allow this constant flow of anger, much like a river of lava, destroying all in it’s path. Most keep it hidden just below the surface.

So you may ask, why?

Allow me…

I am ANGRY!
Angry because ALS came into our home uninvited and violated our lives. It assaulted our bodies and souls, stealing our future, our family.

I AM ANGRY BECAUSE ALS HAS SHATTERED THE SANCTITY OF OUR LIFE, BROKEN OUR HEARTS AND BODY!
I AM FURIOUS THAT THERE IS NOTHING WE CAN DO BUT WAIT, AS THE SPECTER OF DEATH LOOMS OVER US!

I am exhausted from the weight of this knowledge. My voice, my mind is hoarse from screaming. My soul is in need of a nap, before it collpses…

TJ&O
(Juan A Reyes)