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.
Plus the following, eventually; timeline-varies patient to patient.
*Loss of limb function: finger’s, hands, arms and legs. *Above leads to eventual quadriplegia. *Loss of Speech *Loss of swallowing *Difficulty breathing, progressing to mechanical ventilation. *Anxiety, Anger, Depression, Despondency. *Challenge your faith, mind, soul, being, and that of your closest support system, your tribe.
Ok that’s pretty shitty, I know, more importantly you need to know.
Here’s the other side of the coin. ALS will also do the following…
*Strengthen your faith, mind, soul, being and that of your support network. *Take your breath away as you encounter some of the strongest, kindest, humane beings, others affected by ALS. *Humble you, by showing you the true meaning of surrender and acceptance. *Force you to stop or pause your life and learn to appreciate it and those surrounding you.
Sorry to be so blunt; ultimately how you adapt to your new ALS life is entirely in your hands, mind and attitude. Absorb and reflect on the bad, but anchor yourself on what you have not the alternative.
Find the balance you need, it’s unique to each of us, start by catching your breath.
I’m tired, just tired, more than usual. It’s mentally and physically exhausting living with ALS. I can only imagine how cALS feel, drained of life…yet you persevere. Every aspect of life falls on you, regardless of family composition; there’s always one in the family who rises to the challenge, taking the lead like a cALS General. You know who you are, and thank you… Thank You.
Still the weight of ALS presses down, some days we can’t bare it. Retreating into ourselves, taking a moment to discourse internally. When ready we surface, not without metaphorical bruising, aches and pains. How to embrace hope with a hopeless condition, that’s the core question. The solution only exists in you.
What drives you is unique to… you. What works for me may not work for you. Hope, like faith, is a construct of your making, based on what is important to you. My family is my hope; life is best when shared, in my humble opinion.
So put your hard hat on and get to construct-ing your HOPE. Even in hopelessness, there is “hope”.
ALS, a single card in the deck, “00” on the Roulette, what are the odds; you get the idea. It’s Random, as random as it comes. For most that is certainly true. After genetic testing it does turn out I am as random as they come. This bodes well for my children, to say the least.
But what of the small percentage who’s draw from the deck is the same card generation after generation. Familial or hereditary ALS strikes upward of 10% of cases, leading to a legacy of Loss. Not being in this group I can’t imagine the weight this caries. I wouldn’t presume to know, but having engaged with those who are living with this form of ALS, I have observed this.
Resolve, two divergent forms of resolve that is. Both requiring unimaginable courage, the likes of which can’t be put into words..
Some are resolute in their desire to know, understand and expand the science of Familial ALS. Taking on the weight of knowing what is in store, offering their history and anything else to contribute to treatments or a cure. Diving into the deep end of ALS science and research. Living with the knowledge that the switch to activate ALS resides within their DNA. Resolute in their objective; end ALS!
The second form of resolve is completely in opposition of the first. Not oppositional in a combative way, but a different philosophy or outlook. This group of individuals doesn’t want to live knowing if they carry the gene(s) that trigger ALS. They already know it is a legacy the family has. However they want to live their lives unaltered by the knowledge. Should they develop ALS, they will confront it at that time.
Neither approach should be judged, but each have a profound effect on the families affected. One challenge both approaches share is, informing children, if there are any, or if this is a new development in the family history.
Here in is the dilemma; do you inform your children or siblings. If young, do you burden them with this knowledge? There are considerations to be weighed, best discussed with your medical team or a genetic counselor. This is truly personal and weight decision, not easy by any means.
I am deeply saddened by the legacy of Loss you have to endure. I pray a treatment, or better yet a cure, is developed soon to take away the weight of either existence.
Why and how am I so positive, given that I have ALS. One of the cruelest, unrelenting, take everything one has, disease.
I wish I had an answer, I simply don’t. Am I in denial, one can not deny the obvious, my body is shutting down. ALS by any other name would have the same effect and outcome. Denial, no.
Am I delusional, perhaps, but I’ve always been a dreamer, always wanting to believe in the good we all can do. Spent 21 years caring for others and our nation. Delusional, you bet, one has to be in order to live with ALS.
I can say with certainty that what helps me is… My wife My children My family My friends My care team My fellow persons with ALS especially my IAA comrades.
All of the above are “my” support, from which I draw strength to live with “our” ALS.
My wedding band fell off this morning, while I was being dressed…
Hmm, it just slipped off my finger.
What does this mean?
Well with ALS, only one thing, weight loss accompanied by atrophy. Regardless of rate of progression, there is in fact progression. ALS reminds you of it’s presence abruptly or subtly, like a ring slipping off.
I could dwell on this and lead myself down mental rabbit holes. Or I can move on, adapt and resolve this development.
It’s not some cosmic sign foretelling ominous portents. It’s just a loose ring.
Nice try ALS, but not today!
I’m heading out to get it sized, I’ll think of it as a tighter hug from my wife. So thank you ALS for the reminder that I am loved.
Let me see if I can put it into words and help you understand or experience a taste of ALS.
Hands: have you ever carried a heavy item and when you put it down your fingers won’t move, they are stiff. After a moment they return to normal. Well for me they don’t, they remain stiff and unresponsive. They are also very weak, can’t grasp or lift a tissue.
Legs: when they aren’t cramping they are weak and while walking (very short distances) they don’t respond to my desired requests. They actually feel as though I have 100 pound ankle weights strapped to each leg. My knees and ankles give out from time to time risking a fall.
Eating: first off it is unavoidable that ALS takes the ability to swallow, however it begins with the tongue. You see the tongue becomes unresponsive and difficult to control. At this point imagine getting anesthesia in your mouth and your tongue is affected. In essence manipulation of food is challenging. This makes it difficult to move food away from the back of your throat causing frequent gagging. Now the epiglotis, the flap that separates your airway from your esophagus, well it starts to falter, allowing food to remain at the opening. This causes repeated swallowing and can lead to coughing and choking.
Laryngeal spasms: has your dog ever sounded like they are about to hack up a furr ball? Thats a spasm, in a person it sounds very scary. Imagine getting the wind knocked out of you, when you try and take a breath you cant… thats what it sounds like.
Neck: many ALS patients lose muscle strength and tone in the neck as it progresses, thus needing neck braces or head restraints. Imagin having a 50 pound weight on your head, eventually you can’t hold your head up. Many patients appear to be looking down constantly. Some become locked in this position.
Breathing, try this at home:
(Gather the following) A large shake straw, regular straw and a coffee stirrer. Now try this, take a normal healthy breath, now repeat breathing through each straw. You have just simulated progressive respiratory decline in an ALS patient.
Now don’t panic and catch your breath.
Last exercise: now find a a busy location in your home, sit in a chair and don’t move or speak. Think of your favorite drink or snack. Now without speaking or moving communicate to your family that you would like that drink or snack. You want to get the real experience, try using a patient’s eyegaze computer, let’s time how long it takes to get frustrated?
This is what ALS feels like. Let me know how it felt for you.
Who said a terminal condition ends romance, not this guy!
Allow me to set the scene.
Wife has finished her morning beauty routine, as she prepares to run errands. I am breathless; at her beauty? Well of course, but also because I just transferred to the toilet.
What did you expect? This is ALS we’re talking about!
Where was I? Oh yeah, breathless!
Our eyes lock, without speaking a word we say “I Love You”.
I say “see you later”, she replies with reminders to not forget a few things she needs me to do. Translation in my mind… I’ve still got it, she needs me.
The romance is still there!
You see, what I haven’t shared is that while this exchange took place I had…not made it to the toilet in time. My caregiver was in the process of wiping my bum, as a result of my not making the throne in time.
You see, even in the midst of a crappy situation, we focus on what’s truly important, our love for each other, and keeping a good stock of baby wipes.
ALS TEXAS DAD 