ALS, A Personnel Time-line

Summer of 2013
Well that was weird!? I had Tripped several times, kicking a soccer ball at a park with the kids.
Early 2014
I noticed my left hand was having trouble holding items, the muscles between the thumb and index finger had wasted away. Within a few months my right hand did the same. This concerned me, so I went to my PCM.

Later in 2014
Extensive labs for common concerns: heavy metals, toxins, Lime Disease, MRI’s, CT Scans and two EMG’s — INCONCLUSIVE!
My PCM tried for a second opinion in Houston. Insurance denied, this is now early 2015.

In 2015 I began experiencing the following:
Tripping at work
Difficulties writing
A slight limp
Excessive fatigue
Emotional breakdowns

A friend recommended a neurologist they had experience with. My record were forwarded to the clinic. Appointment scheduled for 9 am, October 14th, 2015.

After a brief exam and review of history, symptoms and discussion of possibilities, he excused himself. When he returned, he explained that he stepped out to review the EMG’s with a colleague.
“I’m sorry Mr. Reyes, everything is indicative of ALS. Are you familiar with it? “ I am. “unfortunately there is no cure or treatment to stop it, and is fatal. “

That da I was prescribed Riluzole and Neudexta, in addition to being referred to an ALS center of excellence in San Antonio. This was to confirm the diagnosis and to explore treatment options. December of 2015, ALS confirmed.

Present day, 7.5 years living with one of the most devastating diseases known. I have extremely limited use of hands, use a powerchair to navigate through life. I require assistance with every day to day activities that we all take for granted. I am unable to walk without assistance, otherwise I will end up on the floor.

My swallowing, breathing and speech are affected. I have a feeding tube in place and am attempting to become proficient with my eyegaze, the computer that will speak for me. Allowing me continue engaging with the world.

Of course there are many minute details that build the time-line that I haven’t included. Not because it’s too much to share, but because it’s unique to me and I also don’t want to keep you up at night. Because it would in fact make you wonder how the hell we endure this living horror.

ALS The Painless Disease

ALS Awareness Month: Day 3

True or False?

How about, True & False.

Yes ALS itself does not cause pain. As the motor neurons deteriorate, loss of function (movement) ensues, pain receptors remain in tact. However the pathology of ALS does not elicit pain in and of itself. So ALS the disease process, is not painful. Now before you jump on me for stating this, be aware that pain does in fact accompany the effects of ALS on the body, mind and soul.

The body – as the neurons die, muscle weakness follows, leading to atrophy. This, in advanced stages of ALS, is what makes us appear gaunt and emaciated. Limbs begin contracting, cramps are a precursor of this. But not just feet, legs and arms, oh no. Cramps in the abdomen, neck, fingers, toes and tongue. Strictures, the locking of limbs, and the neck. Which contorts the body into uncomfortable positions. All of what I just mentioned are painful.

Little known pains associated with ALS:

  • Heel pain/burning due to foot drop
  • Hot flashes
  • Sensitivity to cold
  • Fasciculation’s (all body twitches)
  • Yawns, causing lockjaw and full body spasms
  • Tongue and cheek biting
  • Neck pain due to head drop
  • Injuries as a result of falls

But yeah, ALS is painless…

Mental and spiritual pain are topics onto themselves.


Picking Up The Pieces

ALS has just shattered your world, what now? You and your family are left to do what… pick up the pieces.

Much like every shattered mirror, the pieces that remain, are unique to that mirror. So is ALS, your ALS is unique to you. You will put yourself together, when you come to terms with it. Not the same you, though. Cracks are rampant, just like those annoying muscle twitches, fasciculation’s. Every day you wake and look at yourself, everyday a new you. More cracks, perhaps now missing pieces, pieces of you.

How do you begin to pick your pieces up? First you have to face yourself, yes, you are from this moment on, a different person physically, mentally and spiritually. You now live with the knowledge of what will most likely be your demise. The weight this places on your existence can crush any person. If you encounter someone with ALS, know this. Living with ALS requires strength, humility and above all grace.

Grace is essential for everyone affected by ALS. It is what will allow all affected the ability to navigate the rough waters ahead.

Picking up the pieces also requires arming yourself with knowledge. The internet is rife with information, data and opinions. Be careful, and try to focus on what you need at this point in your ALS. I’m partial to two organizations for essential information and support: &

Now that ALS has made itself a part of your life, you must learn to live with it. Yes, there are pieces of you that are missing now. Yet, you are still the same person, you were imperfect before ALS. Now just a bit more, every imperfect piece of you is still… You.


ALS Awareness Month: 1

May is ALS Awareness Month. As I have done for the last 7 years, since my diagnosis, I will share daily. I will do it my way, which is to weave facts into what it’s like living with ALS.


Would you remember the details of the moment you were told…

“you are going to die, and there is nothing that can be done to prevent it.”

This moment is seared in the minds of nearly six thousand persons every year, when diagnosed with ALS. Ask, and they can describe the exam room, or the location in their home, if God forbid they received it over the phone. The initial shock followed by undiscernible information relayed by the doctor. Your ears hearing, but your mind not processing it. Your thoughts a blur, your heart racing, and your soul shattered.

Some experience relief at finally knowing what is causing their body to fail. Others, many, don’t emerge from the mental prison that is ALS.

But I’ve never heard of ALS, what’s going to happen, how long do I have? Google or Siri – What is ALS?

“ALS is a progressive Neurodegenerative disease causing death of motor neurons. Patients experience loss of voluntary muscle function, often succumbing to respiratory failure. Currently there is no cure and it is fatal.”

You have ALS. Three words that anchor you to the very moment they are uttered. A foreshadowing of sorts. Foreshadowing of the eventual locked-in syndrome every person with ALS will experience. Trapped in a body that feels, that senses, that is present, alive but not living. A body shattered by…ALS.


It’s OK to have a Sh***y Day

How are you?
Ahhh! If someone asks me that I will scream!

How the hell do you think I am?! My loved one is dying, I’m loosing them a little everyday. I am exhausted, stressed, and don’t have time to put up with nonsense. My loved one hates that they depend on me for everything now. I know it’s painful for them to feel this way. I try to not show my frustration, but it boils up sometimes.

I’m sorry you can’t do… any longer. I’m sorry you’re embarrassed to be seen this way. I’ll be patient and support you. When you’re ready we can move on from this isolation, until then I am here. I personally don’t care what others think or feel, I know who you still are. You are mine and I am yours, that is all that matters.

I know I snapped at you, that was in response to you snapping at me. Neither of us meant the things we said. I know they are in fact aimed at your ALS, we just happen to be in the line of fire.

I know, I know, you do tell me you are fine, but I know you, you’re not. Thank you for being brave for me.

I effing hate ALS!

This sh***y da will pass. But right now it’s okay to feel the way I do, I’ve earned it.
(Dedicated to caregivers ❤️‍🩹❤️‍🩹❤️‍🩹)

Juan Reye

Alone but not Lonely

There are times when I feel alone, on this, my ALS journey, knowing that I am not. I’m sure many of my fellow ALS’ers feel this. However, we are alone in the sense of the growing isolation that accompanies this disease. Alone in the diminished physical capacities we experience, we feel the miniscule nuances daily. We experience major losses alone until our loved ones notice them and remind us of them, with a glance.

We are alone with our thoughts, as they scurry through the crevices of our minds. Like rats scurrying through the halls of a once thriving mansion, now a husk of what it was. Haunted by the memories of who we were, and hoped to be. Our bodies screeching like Poe’s raven; never more, never more. Never more… walking, hugging, speaking, breathing.

Am I alone in these thoughts? I think not.

We al must pass alone from this life, it’s a singular passage. It’s OK to feel alone, nothing wrong with it at all. The pain comes when you feel lonely. Alone, we can create, while our minds wonder countless worlds within. Alone we can inspire others with our creations, inspire the world even.

Lonely, though, is the nemesis of alone. It can insidiously infiltrate the soul and drain you of hope. Lonely is experienced by too many, for a myriad of reasons. Sometimes self induced, most often inflicted.

I can feel alone, but I’m blessed to not feel lonely. I am surrounded by love. I am valued for what I still have and what I’m able to share. Most importantly, I value myself and what I still have and can do.

I wish you fulfilling alone time, and hope you don’t experience loneliness.

Juan Reyes

Analytical, Hopeful, or both?

A recent exchange I had with a fellow person living with ALS helped me understand a new perspective. The perspective of someone who is inextricably focused on the analytical truth of ALS. What do I mean by this? Well, the hard truth about ALS is; there is no cure. Scientists are not close to discovering a cure. Yes there are treatments that extend life, by miniscule amounts to the average person, but to those living with ALS, we feel different, well some do.

This individual and I had a very civil exchange, no vitriol, no finger pointing, and mutual respect for each others views. He is angry at the false hope perpetuated from every direction, paraphrased of course. I’m not sharing anything not felt by many. Anger can fuel and drive persons to live. This just isn’t my focus, personally.

He shared, very succinctly, his evidence to support his views, and honestly there is no argument. ALS is horrible, devastating, cruel and yes currently incurable. I and so many are acutely aware of this truth, yet we don’t allow the analytics to be our driving force. But, but…neither are wrong; in this climate of intolerance for others beliefs, we both accepted that our views were simply ours.

Ultimately we both hate ALS and the fact that it will take us from our families. The key difference is what drives us.

My focus is hope, although I’m keenly aware of the reality, I’m still hopeful. Hopeful, if not for m, for those to follow. Despite of all the analytical data, I’m extremely hopeful. I don’t refute the data, I am optimistic in spite of it.

Analytical, Hopeful or both…whatever drives you to live. You are living none the less.

Juan Reyes

Children Of ALS…

The day we introduced you to these three letters, it altered our lives and relationships irrevocably. Regardless of your age at the time, you grasped the gravity, you understood. Your response broke me, not because you cried, but because you didn’t. You responded with a hug and “it’s ok”.

Your strength astounds me, I am blown away by your resilience. I know you cry when alone or with your siblings, asking, why them, why now, why us? I don’t have those answers. All I will say is, let’s make the most of it and create wonderful memories.

I know I’m supposed to take care of you, not the other way around. It was never supposed to be this way. I try not to cry, but I can’t help it when I look at you. My thoughts go back to my feeding you as a baby, now that you feed me. Now that our lives have forced us to switch roles.

Now, instead of talking about your future plans, we have conversations about my wishes; I have to let you know before I lose my voice. Your days now revolve around my needs; instead of spending time with friends, your days are spent caring for me.

Memories flood your mind while tears flow from your heart. My suffering has ended, and yours has just begun. Know this, the pain will never leave, but life will weave into it and soften it’s effect. It wasn’t supposed to be this way.

Once these three letters take hold, they never ever let go…

Juan Reyes (TJO)

Looks Can Be Deceiving…

Yesterday I shared about unintentional or intentional comments that some might say, hurt, when uttered. One being, “you look good”, or “you don’t look sick”, respective our Amyotrophic Lateral Sclerosis (ALS).

So, what exactly do you expect to see, once you are aware that someone has ALS? Someone like Stephen Hawking? Or can you be honest and admit that you have no idea what it is, or what to expect. Don’t get me wrong, we know and understand it’s well intended. You have to realize that outward manifestations, or visible changes caused by ALS can be deceptive. But how, you may wonder.

Allow me to provide some context to the phrase, “looks can be deceiving”, applicable to ALS. Please understand that by the time one is diagnosed with ALS, the damage is already extensive, however barely perceivable. Physical signs could be as benign as a slight cough, or tickle in the throat. In my case, the scuffed toes of my shoes, later identified as foot drop.

ALS is so difficult to diagnose, that it can take up to two years, if you are not miss-diagnosed with MS, MD, Stroke and a slew of other conditions. The experts have to test for everything else and exclude them before settling on ALS. So if we don’t look sick, or decrepit, it’s not us it’s you.

Let’s look beneath the skin to help you understand. ALS as it begins, is imperceptible. Microscopic nerve cells begin to change, what causes this, extensive research has yet to pinpoint this. Eventually those nerve cells die, specifically nerves that control voluntary movements. There are more physiological systems and organs that are affected than you know. We, the afflicted and our families quickly learn this awful truth.

By the time ALS is even considered as a possible diagnosis, thousands or millions of nerve cells have died.


We will not get better! There are rare exceptions of individuals reversing or halting their ALS. Research is underway to understand why and how.

When we do receive the news, there is a huge mental hurdle to overcome, the first of many more to come. If one is able to come to terms with this new reality, I say if because many simply can’t, to include family members and partners. The physical changes and challenges aren’t far behind.

I may look different, being in a wheelchair. I may sound different, or not be able to speak, but I’m still me, we are all still ourselves. Our minds and feelings are in tact, altered, perhaps frail, but still here.

I, we appreciate your kind words, just realize that how we look is not a reflection of the death that is progressing within us. Our families are keenly and painfully aware. As they see us and the nuanced changes in our bodies. Imagine the pain of a person afflicted with a rapid progression, able bodied one day an gone months later.

This is one of the cruelest diseases, don’t add to the pain by being insensitive, be kind In thought, words and deeds .

Juan Reye

Are you kidding me!What did you just say!?

You’ll get better right?
Isn’t it nice not having to work anymore.
Well, you don’t look sick, it must not be that bad.
Didn’t they cure it with the ice bucket challenge?
Your spouse is still able to walk, why do you have to stay home with them?
Your child is young. ALS doesn’t affect young people. Are you sure it’s ALS?

Many persons and family members affected by ALS have heard the statements above. Sadly many have heard this from actual family members, even some caregivers.

What don’t you get about ALS and how devastating it is!?

We have been told we are dying, six months to a year for some, two to five on average for most. How would you handle this news, delivered in a cold clinical setting, in a matter of fact fashion. “We’ll give you a few minutes, but we will need the exam room shortly.”

This is followed by gleaning what your mind can absorb off of the tidal wave of information thrust on us. Coming to terms with ALS is an individual journey, time is not on our side. But come to terms with it we must.

Given how ALS ravages our bodies, how can you be so insensitive as to utter words such as those above. We witness others further in this condition and our spirits break. Knowing our future state and eventual demise, yet we persevere, and so do our families.

All we ask is that you acknowledge our ALS, the fatality of it, and please, for the love of anything you hold dear, don’t be patronizing. If you are, you might end up with broken toes or bruised shins!

Juan Reye