I don’t know what’s going on, I keep dropping things and my hand looks thin.
Now I know, it wasn’t my clumsiness. My neurologist called it ALS? What the hell is that, I don’t understand.
A crash course in all things ALS. Not what I expected; came out of nowhere!? What now? It’s good to know what we are dealing with, but I don’t know what to do next.
I don’t know what I will lose next, my hands won’t do what I ask of them any longer. It has helped me to meet others with ALS, now I know what to expect and it scares the hell out of me.
We’ve talked about what is to come, we don’t want to know, yet we already do. What we don’t know is when or how, and I’m ok not knowing. The one thing I know for certain, is that your love and support makes enduring ALS bearable, this I know in my heart.
It’s all about our mindset. Nothing wrong with a little levity…
I’m too sexy for ALS!
Allow me to illustrate how ALS has made me more attractive, I’m not trying to be vein it’s just a fact. Since being diagnosed my wife, can’t wait to shower me, this never happened before. She dotes on me more than ever, she just can’t be away from me for too long; except when she goes to work all day, goes away on business, go shopping all day, goes out to special events with her friends, and spends hours in her craft room. Aside from those instances she’s at my side constantly.
I also believe my fashion sense Garners more attention then before. I call it casual chic. It consists mostly of loose attire with elastic waistbands and loose-fitting tops. It conserves energy by allowing me the ability to still manipulate these articles when encountering certain necessities. Some folks call it sweats and t-shirts, but what do they know about fashion. It could be this that Garners more looks when I step out or it could be the liquid sexy Spritz I get everyday. Others know it as cologne but I call it liquid sexy…
Now as I just mentioned above I get a lot more looks when I am out and about. Who knew that a power wheelchair could enhance one’s appeal. As I roll around in public I noticed out of the corner of my eye more glances in my direction, is it me or my chair. I choose to believe that it’s me. So you see it’s all about your frame of mind. Not to mention that the biggest indicator is the fact that strange women approach me in public more than before. Yes they come to me and share how they knew or lost someone with ALS, so they say…
Of course I jest, if you can’t find humor in the worst situations what point is there?
In reality ALS patients are beautiful people. As this disease ravishes the body all previously existing outward physical attributes are lost. What you have left is the true essence of an individual. Stripped Away is the facade of who we used to be. You are left with an individual who’s soul has been shaken to its core, someone who has come to terms with their mortality and is at peace. What is left is pure resilience and will to live. What could be more beautiful then this.
I know cALS is a silly moniker, and one you never wanted or expected, but here we are. You are my cALS, my connection to the world at large. If a simple thank you could suffice, I would yell it, were I able to. Alas it is not sufficient, nor am I able to. You are a poorly recognized workforce, operating in the background, often in silence, your compensation…my undying love and admiration.
I know I challenge the very love that compels you to my side. Every day exhausting your body, mind and soul. Knowing full well the only resolution to this is a double edge sword that will leave you shattered yet relieved, there is no word that can describe this adequately, other than unconditional love.
No longer able to express my gratitude using my own voice, I am left with loving you through my eyes. Expressing all of my emotions with a glance, wishing this had never happened, thankful though that I have you.
I could recount the many ways you make it possible to be present, the list would never end. However your greatest gift is your time and touch. Your touch reminds me of better times, of tender moments, our life before ALS. At times I close my eyes and relish those moments and memories. When I open my eyes, you are there, exhausted, stressed, afraid…but present, at my side.
Look closely at my eyes, they are screaming…THANK YOU! THANK YOU! THANK YOU!
Given that most if not all of us lose the use of our hands, sign language is well, impossible. Even so we make due and it gets creative.
Eyes: Squinting-I need my glasses Closed-Im reflecting or asleep Wide open-Im awake Glaring-Im angry, choking or need the bathroom now. Watering, most likely being forced to watch a sappy romcom movie…
Nose: Wiggling-about to sneeze Dripping-please wipe Up in the air-please wipe Scrunched up… the dog farted
Eating: Mouth open-ready for next bite Looking away-not ready for next bite Duck lips-please wipe mouth Mouth open blowing-too hot Spitting out food-too much, unable to manipulate or caused gagging Speaking, most likely sharing deeply prophetic life altering knowledge…or straight up BS😉
These are just a few ways Meg Jankowski Reyes and I communicate sometimes, although I can still speak.
Here is one instance the happens often. For some reason if Meg or anyone is feeding me and they put a morsel to my mouth before I’m ready it causes a reflex to swallow. It can cause chocking, this is why I look away, they have learned not to do this, weird, right.
How are you going to do that Juan and Only? Inquiring minds want, ney, need to know?
Thank you for asking!
I will begin a new artistic endeavour, a new art form or medium.
Often after sneezing or just randomly, my nose will drip, like a broken old faucet. Unfortunately, I don’t have the use of my hands to wipe or blow my nose. Making me dependent on the mercy of others for a tissue. When not caught in time my shirt will stand in for said tissue.
I noticed, this morning the pattern on my shirt, much akin to a Rorschach test image.
Cue angelic chorus emphasizing my epiphany…😇🎶
I will create art, one of a kind abstract masterpieces.
I will spray food coloring in my nostrils, induce drainage and allow colorful drops of snot to fall onto a canvas.
I will call it SnArt!!
I can see the gallery now!
Sponsored by: Kleenex, Afrin, Vicks (for my Latin exhibit) and so on.
No! Not that kind of joint, that’s another post titled: It’s Medicinal.
So as my ALS progresses I notice little nuances, moreso due to my slow progression. Over the last few weeks I’ve noticed that my joints are getting weaker, how do I know. They tell me, they whisper to me. I get out of bed and after I stretch I begin my short walk to the bathroom. This is when they softly remind me…
Ankles twinge, knees buckle, hips ache and my shoulders are tight. This is becoming more frequent in the mornings and now every time I transfer, stand and walk. Why is this?
Well you have to understand ALS, as it assaults the nerves and murders them, a bit to dramatic you say. Writers of horror books pale in comparison to the reality of ALS, the ultimate horror story.
So as the nerves deteriorate so do the muscles. In large muscle groups you will notice the joints first, your joints will pull at the muscles as they weaken and at some point they start to tell you; “you might want to reconsider what you’re about to do!”
When as pALS we ignore this warning, this is when bad things happen, i.e. falls, personal accidents etc… Yes I’m stubborn and I put myself at risk, there is no excuse for this, I’m a baaad boy; I blame this on selective hearing when the voices in my head are yelling at me. That’s what sound canceling headphones are for, right.
Pft, what do they know, they’re always arguing with each other.
I went for a run today, after waking, through the neighborhood. I stretched then opened my front door and was greeted by a cool breeze and the overcast morning.
I started out the door down the driveway and onto the asphalt, it had a slight sheen to it’s surface from a light drizzle. My feet struck the ground rhythmically, a slight ache starting in my quads, warming up with every footfall and contraction of the muscles. Up the street, intersection… turn left, deeper into the community. Homes on either side, grass glistening as the suns rays strike the green blades. Yards well manicured, with an occasional obstinate weed breaking the surface; as if to declare “I’m still here!”
I continue on my quest for a good stride as I coast through the quiet streets. Crossing the road from time to time to give way to a neighbor walking their dog; politely nodding, “good morning” expressed in the gesture. They respond in kind, as they subconsciously tug on the leash.
I navigate through the neighborhood, left, right, cul-de-sacs and so on. Having reached my point of return, I retrace my course. Again encountering friendly faces, wagging tails and lolling tongues. It’s a beautiful overcast morning, a beautiful day.
I approach my house, come to a walk and begin a brief cool down. Relishing the ache in my legs and the burning in my lungs as my body normalizes. I take one more look at the morning sky before opening my front door, as I do, I am enveloped by the aroma of fresh brewed coffee.
I ran through my mind this morning.
It’s my only way due to ALS. It feels real every time though, no not the running, but the ache in my legs and the burn in my lungs… because of my ALS.
Hands, something we all take for granted every day, because we simply use them for everything in our lives. If you look at the pictures of my hands below you will notice that the musculature at the base of my thumbs is atrophied. This is due to the nerves in those muscles dying and the muscles end up shrinking. Not the sensory nerves but the nerves that control muscle movement. This leads to a condition called Clawing of the hands.
My hands used to be able to feed me, do handy work around the house, write and type. They used to hold my wife’s hands firmly. Used to grab my kids and tickle them until they cried. They would wrap around my morning cup of coffee. Now I can no longer do any of those things. This is what ALS does, it robs you of the simplest pleasures.
One simple pleasure I miss greatly, turning the page of a book, in particular a paperback. You know one of those dogeared, smells like a n old bookstore. That biblio bouquet that transports your imagination to countless adventures as you turn the pages.
Appreciate your hands and everything you touch, you don’t know when you will lose that ability. When you do, this loss will touch your soul.
Disclaimer* Solely intended to help understand our perspective as a pALS.
If you want to understand what living with ALS is like try some of these activities. Like they say, walk a mile in my shoes, in this case my powerchair.
If you have access borrow a powerchair and spend the day in it. Get loaded into an accessible vehicle and go for a drive, it’s more harrowing than you think. Watch out for those sharp turns!
Hit a retail location and experience being invisible. After you circle the parking lot multiple times trying to find a handicap spot.
Go to a restaurant and wait to be fed, pay attention to the looks you get.
While out and about do a handicap bathroom hunt. Not male or female but a family bathroom that accommodates a powerchair, you will be surprised how few there are.
Don’t speak for the day. Use technology to communicate, phone, tablet, computer or just write. Better yet use a low-tech tool like a letter board (I can send you one).
Place mittens on your hands and go about your day, don’t take them off. Now have a drink, write a note, get dressed.
I challenge you to open your mind and your heart, and roll a mile in my wheels.
At this point in time, in the history of ALS, there is no cure. There are 2 meds, countless potential treatments in development and an army of advocates tirelessly working to end it. So as persons living with ALS we engage, support and wait. We wait, wait for treatments, wait and watch others become free of ALS, as we await the same cure.
After I am cured I would like a few things to happen…
Celebrate my life with me, in spirit; my life without ALS, preferably with an open bar. Keep fighting to create a world without ALS for others. Take care of yourself, take a break, take a trip but most importantly take the time to meet yourself again. Open your heart to new possibilities, new people. Remember me but don’t obsess, I know it will be difficult, wink.
Live, live, live… you have earned it in spades as a caregiver.
My wish for you.
My wish for all affected by the three dreadful letters, ALS.
ALS TEXAS DAD 