Moving through crowds, navigating a busy room, even in the serenity of your home, you feel alone when sitting in a wheelchair. I’m not talking about depression, although that is a very valid concern for many, especially during the holidays. No, I’m talking about the feeling of being in a bubble.

It’s hard to express, let’s call it “The ALS Wheelchair Bubble”. What is the wheelchair bubble, you ask?

This construct of my imagination, is an invisible barrier we, the wheelchair bound, experience both physically and mentally.

The physical:
Toe Crusher Bubble; the safe distance circumferentially to your wheelchair, whereby those around you and their, shins, knees and toes are safe. Victims quickly learn the value of this bubble.

The, “is it contagious bubble”; this bubble has become less hurtful due to Covid. Nevertheless, this bubble consists of the able body person having an irrational fear of “catching” the imaginary “wheelchair virus”. So they keep a safe distance, this bubble also creates the urge to speak loudly. So as to bridge the void.

Technophobia bubble; this one is rather straight forward. The perceived safe distance from technology. The powerchair, eyegaze and ventilator are devices that can elicit fear in the uninitiated. Although they would be coveted by a Steampunk aficionado.

The Mental
This is in essence the internal dialogue we have, this is where we meet ourselves. This bubble is self imposed, it’s our self image.

Perspective Bubble; our actual perspective has been modified to that of our chairs height. We now look up at our peers, eliciting feelings of inadequacy. “I am no longer who I used to be.” Which in many “physical” ways we are not. However, we are still the person(a) we have always been. With one exception, our self perception.

Self Preservation Bubble; the self imposed force field we create to keep from being hurt. This tends to manifest in an outward affect of: depression, anger, grumpiness, and general unapproachability. Which I suppose is the intended effect.

Alone in a Crowd Bubble; this one is due to our believing that there is no one that understands ALS unless they have ALS. That no one can truly know what we are going through. In a sense this is true, but it doesn’t mean others can’t empathize. This belief can and often does, make us feel alone in a crowd. Truth is, we are not. And we are not the only ones that experience this phenomenon.

So as we navigate through life in our wheelchair, remember bubbles aren’t just for kids. We often use bubbles to cope with life.

Have a bubbly day!

TJ&O

What ever you celebrate during this season, one thing for certain, with ALS it’s just not the same.

I used to put the lights up, put together the tree, even decorate the house. Cook up a storm, help my wife wrap gifts past midnight. My one wrap job to her three, lol. But we shared the, even though she may argue with the split. I for one won’t argue that point.

It’s challenging to sit by and watch as the world fly’s by, whizzing past us. As if we are in slow motion and those around us are on fast forward. It seems like this, but truthfully it’s just the way our mind copes with living in a lame body.

Yes it hurts to be a witness rather than an active participant. However, being a witness is still being present. With ALS, being present is what we have left. This is the gift…time, moments, minutes, memories.

What ever you and your family celebrate during this season, I wish you love, peace and many more memorable moments.

From our family, Merry Christmas!

J Reyes

What does “me before you” mean with respect to ALS?

Me Before you is the first thought a parent has when their child is diagnosed with a terminal condition. It should be me, followed by “no parent should outlive their child”.

When we broke the news about ALS to my mom she didn’t understand immediately, we had to explain. Once the information sunk in so did the realization of what it meant. After we had a good cry and long hug, in true Mexican mom fashion, she said “alguien te iso Ojo!” Someone gave you the evil eye…

Since then she has cried allot, I’m sure, but only a few times in front of me. You see she is being strong for me.

Every time she visits, which is as often as she can, she has news of a new treatment in Mexico or some other foreign country. In addition to doting on me, to a fault. This is her way of showing support and indicating that she is not giving up on her boy.

No parent wants to see their child suffer, but that’s the reality of life. I love you mom! Thank you for spoiling me. I know that if you could trade places with me you would.

Many mothers and fathers are dealing with this very situation at this very moment. Asking the universe, why? Why my child? Anger wells up followed by fear and many questions. None of which have a straight forward answer, if at all.

I don’t speak for all, just myself; this disease is not your fault. You and nothing you did caused my ALS. All you can do, all we can do is be here for each other. Yes you will see me deteriorate and it will rip your heart and soul apart. Know that I love you, simply be at my side during this time. Your love and support are the blanket that wraps and gives me comfort.

So you see, “me before you” is very significant with ALS, every parent of a pALS is living this.

Have a blessed day.

TJ&O
(J Reyes)

Once again my mind went there, strange thought moment…

ALS is like a Car dealership.

What!? Have you lost your mind TJ&O!

Sima Dawn na! Let me splain.

ALS comes in many “models”, different “years”, many “styles”, many “colors” and “trims”.

Getting a diagnosis is like car shopping. Sometimes you visit several dealerships (Doctors). This of course after scouring the inter-webs researching (WebMD), for the model you want (don’t want). The dealership, after you purchase enrolls you in their service program (ALS Clinic). Just like a new car our bodies require frequent service, it also devalues, and lets be honest you can’t turn back the odometer.

As for models, there are slow, fast, middle of the road, one seater, two seater, family size and even models passed down to children.

So you see, ALS is like car dealership… just sayin.

TJ&O

You’ve been diagnosed with ALS, what next?

After the initial mind numbing reaction; you know, where your world closes in and you can’t hear a word. For a moment that is, until you regain your composure. Then the questions begin, emanating from your thoughts like a visible dialogue. Flowing like text messages, swirling through your mind, an indiscernible chorus.

What next? Information overload; what’s pertinent, what’s not? Who to ask, when, what to ask? You just want to scream!

You consume every nugget of information possible, mental indigestion ensues. A bloated mind, full of…questions. How will I progress, fast, slow, in between? What can stop, slow down or cure me? Is the twitching the precursor to losing my, arm, leg, hand or foot. Is the choking an indication I’m about to have my last morsel, lose my voice, or worse need a trache?

How, when, what, where? Questions, questions, questions, what are the answers?

I wish there were answers. answers to help you plan for decisions, to anticipate loss, the constant loss, the eventual final loss. Here’s the only truth of ALS; ALS afflicts anyone, in many ways, varying degrees and on different time tables. Some will say they know what loss is coming next, truly only the disease knows. Treatments, what few there are, work for some but not for all. Until there is a cure, ALS is our companion until we take our last breath, this is true.

There is no way around the above process, we all experience this.

What next?

Live your life.
Live your way.
Live the best you can.
Live!

TJ&O
(Juan Reyes)

My broken body.
Your broken heart.

It’s not often that one realizes the cosmic convergence of two souls. Until the universe throws a challenge onto your path. ALS is such a challenge.

As my body deteriorates, in essence becoming broken, so does your heart. Yet you remain, through the sleepless nights, through your exhaustion; at my side.

When our hearts collided we didn’t know what our future held, yet we hurled ourselves heart first! Little did we know the mountain that lay before us. As we struggle towards its precipice we are conflicted. Why, because we know the vantage point, when we reach it, will be splendid but also our last.

A match made in heaven… my broken body and your broken heart.

TJ&O
(Juan Reyes)

The day we introduced you to these three letters, it altered our lives and relationship 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 wishesb; 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 with me.

Memories flood your mind while tears flow from your heart. My suffering has ended, 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…A-L-S.

TJ&O

(Juan Reyes)

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)