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.

The sign language of ALS…

According to me, TJ&O

Going to capitalize on my ALS!

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.

TJ&O

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.

🎶Head
Shoulders🎶
🎶Knees
And Toes🎶

TJ&O

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.

TJ&O

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.

TJ&O

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.

1. 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.

2. Go to a restaurant and wait to be fed, pay attention to the looks you get.
3. 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.
4. 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).
5. 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.

TJ&O

(I’m just sharing, what’s in my head)

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.

TJ&O

Conserving energy for ALS patients is one of the key factors to being able to maintain a somewhat active life and to continue to be engaged with family and friends. You see the body is constantly on overdrive because the nerve ganglion are firing constantly in the hopes of getting signals to the muscles. However the nerves are damaged and simply can’t get the message to the muscles. So metabolically the body is on Overdrive and consuming calories and burning muscle tissue. This is why it’s imperative to drink plenty of fluids to flush the waste out of the body and to maintain hydration.

Here’s the rub though PBA is known to also cause urinary urgency and many ALS patients don’t want to drink fluids because they’re constantly going to the bathroom. So this is a double-edged sword, many ALS patients end up dehydrated and malnourished. Added to this is the fact that swallowing and eating become increasingly more difficult as the condition Progresses.

This is why a feeding tube is necessary, and it is often highly recommended that the feeding tube be placed while one is still healthy and able to tolerate the procedure. Maintaining a healthy BMI has been tied to having a longer lifespan for ALS patients. So you can see my surprise and joy at being told by my first neurologist “dont lose any weight”. I have tried my hardest to comply with this medical order, LOL.

Back to maintaining rest, it’s imperative that if the patient wants to be active and stay connected with the family that they conserve energy throughout the day. There are many ALS patients who are still very active, I’ve known some that still run and apparently it helps their condition. Not to mention that it helps your mental health also. Exercise is recommended for ALS patients but in moderation so as not to burn out the muscles. The recovery phase after exertion is exponentially increased. Just to give you an idea if I have a very active day where I’m up and down out and about it may take me 2 days to recover. We’re talking about multiple naps laying down and just taking it easy.

There are ways ALS patients can conserve energy while they are still able to move around. This is by using power wheelchairs and of course walkers in the home to prevent Falls. I tend to spend quite a bit of time in my recliner and in the bedroom throughout the day because I know when the family gets home from work and school I want to engage and be a part of it. Of course there are some days where I’m simply too tired and I relegating myself to the bedroom to rest. Now recently I’ve noticed that if I spend a good portion of the day in my wheelchair my lower legs will become swollen. Having a medical background I knew exactly what I needed to do, so I got some compression socks and voila no more swollen legs.

Last night when Meg with filming the post that included our kids we had a friend asked if I was tired or if my voice is being affected. This was a very good question and one that I would like to address. The answer is both by the end of the day my voice can become weak to where I’m only able to whisper and if I exert myself to speak loud it can sound like I’m intoxicated as I try to get the words out. This is also compromised due to the fact that ALS can affect the central nervous system, thus PBA. However this also affects swallowing, breathing and speech. As I have mentioned previously ALS is unique to each patient, in the past I have encountered several individuals whose initial or only symptom was losing their ability to speak. So what I need to do is a limit my live post to the morning so in my voice is normal, LOL.

Have a super fantastic day one and all!

The Juan and Only

Open your eyes and greet the day. Stretch, if you can, lay there and contemplate your day. Give thanks for all you have in your life, to include those present in your life.

Get up, if you can, stretch a bit more, do your morning routine and start your day.

Even with physical limitations, this is my morning routine. We are not any different with respect to this. Where it differs is the fact I need help to start my day and throughout.

I desire to help my family with errands and parenting matters, prepare (direct) meals etc… this is my job now. Life continues even when your body cant keep up. With respect to our minds, ALS doesn’t affect this, only a very small percentage. Access to technology makes it possible to remain engaged and active.

So, open your eyes, stretch and start your day with gratitude, it will put you in the right frame of mind.

Good Morning

TJ&O

ALS: Ameotrophic Lateral Sclerosis

MND: Motor Neuron Disease (term used internationally for ALS)

ND: Neurodegenerative Disease (category of diseases that ALS falls under)

pALS: Person Living with ALS
cALS: Caregiver of person living with ALS

fALS: Familial ALS (genetic form of ALS, hereditary)

vALS: Veteran with ALS

BIPAP: ventilator commonly used by pALS, prolongs diaphragm function.

PEG: Feeding tube placed in abdomen directly into stomach.

Powerchair: Electric wheelchair

AFO: Ankle Foot Orthotic, leg brace used to treat/prevent foot drop.

ROM: my Range Of Motion, term used to describe stretching limbs to retain flexibility.

Clinical Trials: Testing of treatments, in development, on patients, necessary to prove efficacy and safety.

Biomarkers: Biological indicators used to detect disease i.e. lab test. ALS currently has no standardized biomarkers, robust research currently being done.

These are just a few terms you will become familiar with as you begin your ALS journey. Sadly you will soon become fluent in the language of ALS. Don’t get lost in translation, there is one term that needs no translation at all…HOPE!

TJ&O