Being Hispanic with ALS, so what does that mean? Dejame te digo! (Let me tell you)…

First off when I was diagnosed, I’ve shared this before, my mom asked “who the hell gave me the evil eye”. Thats when she activated the “Comadre” Network, asking for the best curandero (witch doctor) around. So ther was a whole lot of genuflecting and a bunch of Hail Mary’s going around and rosaries flung about like nun-chuck’s. All in an effort to cast out the evil overtaking my body.

Next came the cast down looks by relatives as they shuffled their feet saying things like, sorry wey that’s some bad sh#*, thats too bad bro, I had an uncle/cousin/aunt/friend that had the ALS… so what is it? Also statements like, don’t you worry Mijo sigule con madre no se me awite! Aunts beating their chest as they proclaim to God, xa Juanito no!”

It’s just our way…

Next comes the shots at social gatherings, being egged on to do one more, no se me raje, hechale con ganas, no chinges otra mas! And thats just with my aunts… I can’t repeat what my uncles say. Then after a handful of shots the crying starts, I love you mijo, no I really do! Thats typically when the mood turns somber for a bit, before everyone starts picking on you relentlessly…

It’s just our way…

One of the most painful losses however is a social aspect particular to Hispanic culture. It happens when an ALS patient can no longer use their arms. It pains me to share this tragic eventuality… no longer being able to play LOTERIA (Mexican bingo)! This institution of Hispanic social gathering activities is the one thing that can bring unity and division to a baby shower, birthday, christening, Easter etc… Eventually someone will be accused of cheating, fixing cards, not anteing up, all for a hand full of loose change. Feuds have been started over Loteria, I kid you not, lol.

In the end, family you haven’t seen in years show up to offer their love and support, cousins, aunts, uncles and so on.

It’s just our way…

TJ&O

Folks, Ive been hacked. This mallware has affected my entire network, slowly shutting down partition by partition. It’s corrupted the soundboard and external drives. Port drivers have been compromised. Bringing my entire system to a crawl.

It has come to my attention that there is no software to fix this, although the F-ix & D-ebug A-gency is holding back patches due to concerns of secondary corruption and OS disparities, patches don’t function across platforms.

The malware has been identified as: A-ggressive L-ogarithmic S-ynapse Crash

It seems I can only stand by for the blue scream.

#NoBlueScreans

#OpenSourceFDA

TJ&O

ALS brings with a multitude of changes for the person and their families and beyond. All the obvious physical, emotional and mental health. There is one aspect that can impact all of the above, in certain cases self imposed…isolation.

This is a complex topic so I won’t dive into every aspect. I will however focus on one, how anyone can help a person living with ALS. This is not complicated but it can be difficult for some…being present.

Being present means exactly that, nothing more; Visiting, Helping, Learning. It can be difficult, why? Several reasons: time, access, distance, and the hardest…being able to witness a loved one because a shell of who they were. Not everyone is equipped to do that last one. I will say this though, the person with ALS is-still-the-same-person! I cannot emphasize this enough. The significant difference is physical abilities, that and the presence of medical devices. That’s it, perhaps additionally is a new perspective on life and priorities.

Everything else takes a back seat to being present. Learn what, how and when to step in and help, not just the person with ALS, but the caregiver also. Either one may resist your efforts, but they need it desperately.

Being Present is a gift, a gift to each other.

TJ&O

What does it cost to live with ALS? This question has many answers, some you may not expect. Let’s chat bout that a bit.

These are the costs of living with ALS:
$$$$$$
Pain
Anxiety
Depression
Time
Relationships
Physical abilities
Your Voice
Your Breath
Your Life

Finances, let’s start there why don’t we. First, if you-work or own a business, eventually you will be forced to retire or divest yourself of the business. There goes your source of income. Now you are on social security disability, if you contributed and qualify? This doesn’t begin to be adequate, many have to make drastic sacrifices to survive. Some resort to crowd funding to meet needs; yet the US is considered the richest most socially conscientious nation, I won’t go down that rabbit hole.

The financial devastation of ALS is truly a silent epidemic, to the general public that is. Those living with ALS know too well it’s insidious nature. Allow me to hit you with some figures:

• Over a 10-year period (2001-2010), all expenses related to the cost of care for an individual patient were collected concurrently and then analyzed in 2012. Results showed that total disease-duration costs were $1,433,992 (85% paid by insurance, 9% paid by family, 6% paid by charities). The highest costs were for in-home caregivers ($669,150), ventilation ($212,430) and hospital care ($114,558). In conclusion, this case study illustrates costs of care for ALS as a burden for patients that may impact treatment decisions.

*https://pubmed.ncbi.nlm.nih.gov/25245119/

This is dated, but what’s relevant is the reference to insurance coverage. Many needs of persons with ALS are often declined by insurance, don’t get me started on MEDICARE! So in addition to all the above, one often has to fight for approval, it is the family that ends up fighting.

Pain- it is stated that ALS is a painless condition…Ha! It is an emotional and secondary effect impact from a semi truck. The emotional pain is obvious, but the physical pain is a secondary effect from atrophy, strictures and locked joints.

Anxiety/Depression- these two are companions of ALS. Not just for the patient but also the family or caregiver. Please seek professional help when it becomes difficult to navigate living with ALS, sooner rather than later.

Time- goes without saying, from the onset of symptoms you are now on the ALS clock. What does this mean? ALS now determine how much longer you live, just a blunt truth.

Relationships- this is very painful, a double edged sword. You now depend on others for every need, some loose everyone close. However friends fall into two categories: those that can handle your new way of life and those that can’t. Here’s the blunt truth, not everyone is equipped to witness your decline.

Physical abilities, Voice, Breathing- eventually we will be paralyzed and depend on mechanical ventilation to breathe and eyegaze to communicate, if you choose to, many don’t.

Your Life…nuf said! M-kay

What’s your life worth? Mine is PRICELESS!

TJ&O

“You have ALS…”

Yes devastating to hear, but how did you get here? Where on your body did it first manifest? When did it introduce itself? How long from onset did it take to get diagnosed?

Most of the public, who are mostly unaware of ALS, know even less of the painful journey to “you have ALS”.

From months up to two years is the average timeframe it takes to be diagnosed. But isn’t there a blood test, scan or exam that can tell you?

No…no, and no!

Well at least there’s treatments and aren’t they close to finding a cure!?

Eh, no…and no! There is nothing to stop or slow it down. How can I put this delicately…the only cure is death. If you didn’t know, well now you do.

So what does it take to get a diagnosis? Here is the laundry list:
Referral to a Neurologist
They can and usually run blood tests, standard, heavy metals, Lyme disease, environmental and industrial toxins.
Exposure or long term use of medications, supplements etc…
CT Scan, MRI, x-rays
Electromyologram (EMG) nerve conduction test.
Nerve biopsy

All of the above are typical, what I didn’t share are the sleep if tests, scans and referrals to other specialist along the way, to rule out all the other conditions. Conditions that mimic, parallel or present similar to ALS.

My journey took almost two years, one possible neck surgery, three neurologist and so on.

What would you do waiting to get answers to what is destroying your body. Wait patiently, put all your faith in the specialists, or loose your mind and get angrier by the day. Becoming increasingly frustrated at getting poked and prodded without answers. Oh and if it weren’t bad enough the average prognosis is 2-5 years. You’ve just lost two years of ALS life just getting the diagnosis.

TJ&O

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

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

These are just a few, this list continues to grow, sadly. One day my name will be added. I’m not afraid, it’s a fact I don’t shy away from.

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 Fu*# about status, wealth, power or influence. ALS takes who it wants, when it wants.

TJ&O

Don’t mind me, but I’m flooding Social Media with ALS Awareness.

Do YOU know what ALS is?

60% of Americans haven’t a clue what it is.

You mention Lou Gehrig, baby boomers know.

You mention Stephen Hawking, fans of The Big Bang Theory know.

You ask avid football fans who Steve Gleason is, they know.

You mention The Ice Bucket Challenge, a high percentage of chilled participants had no idea why they were actually doing it.

You see, most people suffering from ALS grow isolated; some by choice, most because its hard for others to pause and meet your new pace of life. It takes a great deal of effort and energy to actually get out there and advocate as a patient. Not to mention the effort by family and caregivers to help a patient be relevant to the cause.

So if you run across or meet an ALS patient know this; the sheer will to live, actually live with ALS, is a feat. Take a moment and learn what ALS is. How it takes everything from us. Most importantly learn that we are alive, present and still contributing.

Do you know what ALS is? I do.
If you have a moment I will tell you how I Live with it.

It’s that time of year, May! Also known as ALS Awareness Month. This will make the 7th year that I post every day about ALS…post #1:

October 14, 2015
Welcome Mr. Reyes, I would like to introduce you to Lou, Lou this is Juan. You two will coexist from this day on, I’ll give you a few minutes to get acquainted. Did this actually happen? No, but this is what it felt like when the Dr. diagnosed me with ALS. As far as introductions go, this was not welcome or pleasant.

Lou had already made it’s presence known, we just hadn’t been formally introduced. Like an unexpected house guest, it showed up and never left. It has barged into our lives unapologetically and made itself at home. I imagine the following exchange…

~Hi Juan, nice to meet you. I’m terribly sorry to meet under these circumstances, but here we are. Unfortunately I am here to stay, you understand, right?

I numbingly nod acknowledging the comment.

Ok, now about me…I am, well allow me to be blunt, I’m a shitty companion. To date, I have taken from you; muscle tone and strength in your hands, your balance and your coordination. I will, depending on how aggressive I am, continue taking your physical attributes, rapidly or gradually. Only time will tell which path I take you on.

What will I take, you ask? Well if you’re ready to hear it, I’ll tell you, are you?

I think so, yes tell me.

Ok Juan, I will take everything. What do I mean by everything. Well, anything that is controlled by nerves that are responsible for voluntary movement. All the obvious ones and many most people aren’t aware of. Hands, arms, legs, those are the obvious ones. I will eventually take your ability to speak, swallow and even your ability to breathe.

Are you sure you want to hear more? I can be very overwhelming, it’s just my nature a character flaw of mine you could say.

I think I’ve heard enough for today. I am, I mean I feel rather numb right now. Honestly I’m really surprised I didn’t puke, I don’t really know what I’m feeling. I know it’s, I mean you are terminal, but…why, why me, why now? You’re going to kill me, yet you’re just here, sitting, unemotional and completely transparent.

I know, said Lou, it’s not personal, it’s just biology. By the way, Lou is just a nickname, my full name is, Amyotrophic Lateral Sclerosis. Again, I’m sorry, but I can’t help myself. For now just know I’m with you until I’m done.

This exchange takes place approximately every 90 minutes . Perhaps the dialogue is considerably more colorful, or laden with expletives. Most likely one sided, as Lou monopolizes the conversation due to our being dumbstruck at this introduction.

Now you’ve been introduced to Lou also…

TJ&O