ALS Awareness Month: Day 6

Recently I’ve come across those in the ALS community that feel the ALS public conversation is filled and represented by super-resilient personalities. A quick browse of the major SM Outlets (IG, FB, Twitter etc…), will prove this to be true, somewhat. For the most part these are individuals and families willing to put their life out there; primarily to generate awareness and catalyze treatments. I’m in this very category, my lane is more emotional support through creative writing… I’m ok with this.

Does this truly represent the destructive, unrelenting ALS toll on the body, family and the global ALS community. I have to agree it does NOT, if I must be honest.

So what does?

Let’s pull back the curtain for a moment.
Potential Triggers
The road to diagnosis is extremely frustrating, long and ultimately devastating. This is but the beginning of the assault. So insidious and heterogeneous (different case by case), that one has better luck in Vegas than guessing how progression will happen: fast, moderate, plateau or slow. This simply adds unbearable weight and stress on the person with ALS and the family.

Regardless of the onset, arms, hands, legs, speech, swallowing or breathing, the outcome is still the same, terminal. Let me be blunt, ALS kills everyone that gets it, every single person! The wake of destruction created by ALS is felt by the family for ever; some for generations.

This is what every person with ALS will experience, in no specific order:

Loss of limb function, total loss. You sneeze, you can’t lift a tissue to blow your nose. Walk today, with assistance, to being unable to bear any weight the next day. I believe the term is paralyzed, not a little, but completely.

Breathing, you know that thing we all do without thinking, yeah that disappears also. Some slow, some abruptly, oh and did you know this, the majority of us will die of respiratory failure. ALS literally takes our breath away, our last breath.

Until this happens, we and our families have to endure loss of privacy, modesty and dignity. As much as all those around try to protect our dignity, to the best of their ability…ALS is utterly undignified. Diapers, catheters, feeding tubes, personal accidents. Ok, full transparency… if we live long enough, we will piss and shit ourselves, did you expect a quadriplegic to not poop and pee? Well shit! Some will lose so much muscle tone that they are unable to bear down. Did you know that, probably not.

Do you enjoy food, so do we, ALS takes that also. Prior to loosing the ability to swallow, we experience episodes of choking, not just on food but our own phlegm. Did I mention our diaphragm stops working, essential for pulmonary toiletry. You know…coughing shit up. This in turn leads to weight loss, accentuated by atrophy. Making most of us gaunt, emaciated, skeletal, how’s that for a visual? Not pretty, well ALS, in my opinion, is one of the ugliest diseases.

I will leave you with this.

The person who is diagnosed with ALS, is not the person the family says goodbye to. Not in appearance, perhaps in mind and spirit but not the body. Long gone is every physical attribute that was the loved one. Except the eyes, our eyes will always convey our love for you, my (our) family(s), our world. We can’t live without your love and support, we simply can’t.

This is ALS, but I’ve only scratched the surface; there’s so much more, gross, ugly, uncomfortable, painful. To be honest you can’t handle the truth, you can’t handle ALS, neither can we, but we live in spite of it. My
— Continued —
quad·ri·ple·gic
/ˌkwädrəˈplējik/
adjective

1. affected by or relating to paralysis of all four limbs; tetraplegic.
   “quadriplegic patients”
   noun
2. a person affected by paralysis of all four limbs.
   “a car accident left him a quadriplegic”

Paralyzed from the neck down. This is what a person living with ALS will experience; if they live long enough to reach this inevitable conclusion. So please forgive us if your well intended wishes are occasionally rebuffed. Or we may simply smile…graciously.

Many paraplegic persons are a result of injury to their spine. ALS on the other hand is a progressive degenerative disease, where by some unknown trigger, motor neurons die. Translation – the nerves that control movement die. The general public believes that arms and legs are the principle muscles that move. Once diagnosed with ALS you learn there are oh so many more.

• Diaphragm
• Neck
• Tongue
• Soft palate
• Swallowing
• Lips
• Eyelids

All of the above can be affected in too many variations and sequences. The typical prognosis for us is 2 – 5 years. So if it can take up to two years to be diagnosed, how much time does one actually have. Again you have better odds in Vegas than guessing anyone’s prognosis.

Okay let’s get into some of the odd things that ALS causes to our bodies, again some experience these some don’t. Sialorrhea! What the heck is that!? It’s the medical term for excessive saliva, drooling. The drooling isn’t the major issue, although uncomfortable socially, the real problem is choking. Many persons with ALS often aspirate drainage and end up with life threatening pneumonia. Paralyzed and choking on your own saliva, ALS is simply brutal.

PBA, Pseudobulbar Affect; emotional incontinence, uncontrollable crying or laughing. This is a little side hustle ALS has, although this condition can be triggered by a number of neurological conditions and head trauma. So what does PBA do to the person? It literally makes one think they’re loosing their mind. Total emotional breakdowns for no reason or caused by emotionally charged triggers. PBA also causes laughter or giggling for no reason, most often at inopportune moments. Luckily there are medications that can help suppress or control the intensity and frequency.

ALS, three letters that can be expressed in so many four letter words, expletives just don’t do it justice as to how devastating it is. So if you encounter a person living with ALS and their family, consider what they are enduring and realize how strong they are.

TJO

What is that Juan?

Thanks for asking, let me see if can illustrate.

Unbeknownst to the person later diagnosed with ALS, their body has in fact been on borrowed time. You see ALS does not announce itself, it creeps in and disguises itself as many other conditions. Thus the reason for a protracted diagnosis, for the majority of persons.

The diagnosis is simply when one is made aware of being on the ALS Clock. But what is the ALS Clock?

Tick…

I’m sorry to say, I do believe you have ALS.

Tock…

We need to tell the kids and our family.

Tick…

My powerchair arrived, I’m so relieved, that last fall was not fun.

Tock…

Hands are done, what’s next?

How do you mark time since diagnosis?

There is no right or wrong answer, I assure you it’s done with many factors by all of us. The tendency is to focus on milestones, such as those above. Major changes in our physical abilities, loss of function and large equipment delivery. Or by the passing of yet another beautiful soul. Time is the one thing that all people have in common, we each mark it in our own way.

With ALS, in more advanced people, it is quietly marked by rhythmic tones from medical devices. These devices marking time while they generate time for us, ultimate codependency.

Our eyes follow all activities around us, marking time with every move, the caregiver dance; which demands more from the soul than the body. A dance comprised of constant vigilance, constant movement and an occasional breath.

The fickleness of time; unfortunately it doesn’t afford the same courtesy to all suffering from ALS. Some get more than others for reasons unknown. So what to do…?

Savor and cherish every minute, every moment, every day. Painful, uneventful, good or bad, a moment is a moment. Take it in, reflect, wait for the next one… Repeat.

TJ&O

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.
TJO

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.

TJO

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: https://iamals.org/ & https://www.youralsguide.com/

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.

TJO