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

This is a repost

The day we introduced you to these three letters, it altered our lives and relationship irrevocably. Regardless of your age at the time, you grasped the gravity, you understood. Your response broke me, not because you cried, but because you didn’t. You responded with a hug and “it’s ok”.

Your strength astounds me, I am blown away by your resilience. I know you cry when alone or with your siblings, asking, why them, why now, why us? I don’t have those answers. All I will say is, let’s make the most of it and create wonderful memories.

I know I’m supposed to take care of you, not the other way around. It was never supposed to be this way. I try not to cry, but I can’t help it when I look at you. My thoughts go back to my feeding you as a baby, now that you feed me. Now that our lives have forced us to switch roles.

Now instead of talking about your future plans we have conversations about my wishes; I have to let you know before I lose my voice. Your days now revolve around my needs; instead of spending time with friends, your days are spent caring for me.

Memories flood your mind while tears flow from your heart. My suffering has ended, yours has just begun. Know this, the pain will never leave, but life will weave into it and soften it’s effect. It wasn’t supposed to be this way.

Once these three letters take hold, they never ever let go…
A-L-S.

TJ&O

…

Very much a private matter, intimacy begins to evolve between a couple when a terminal condition is diagnosed. Especially with a condition as debilitating as ALS.

As a patien, and I speak for my self, you begin to wonder if your partner will continue to be atracted? You also anticipate when you can no longer be intimate. As with anything else, communication is the key, its also natural to have concerns.

From a partners perspective Fear is a big factor. Fear of causing pain, fear of exacerbating the condition and fear of hurting their loved ones feelings. All are natural and valid concerns. This is compounded by one obvious factor, weather the loved one sees their partner as a patient first or not. It’s difficult, understandibly, to get past the wheelchair and other devices, there’s nothing appealing about this.

So intimacy evolves from the physical to just being present. It becomes a simple touch, holding hands or an unexpected caress. A stolen glance followed by a smile. It also evolves into the fun of the chase, 😎 becoming the essential aspect in the relationship.

Everyone copes in their own way, this is why it so personal. It truly becomes a spiritual intimacy, a love to last beyond the here and now.

My point of this post is just to share one more aspect that patients and their loved ones have to traverse on their ALS journey. There are many seminars and one on one counseling available to help patients and their partners navigate through this. Most importantly is just good honest communication.

TJ&O

Three letters that bring about very interesting conversations. Conversations like the one Meg, my wife, and I have had. Albeit brief, but still had them, it will lead to more discussion and actionable decisions. Decisions I hope won’t take place for some time to come.

What was the topic, you ask?

Its a serious one, unpleasant but necessary … Final Wishes.
I will let that settle in.

The passing of fellow warriors week after week reminds us of the importance of this conversation. Yes its very important, unpleasant but a must. Especially when living with a terminal condition. It is also very personal, very personal.

Meg and I will continue to discuss, ultimately making a list of my wishes. Don’t worry, we are good, we tend to be very pragmatic. Military life has conditioned us to plan and plan we will.

Don’t fear the inevitable, embrace it and script your curtain call, your family will appreciate this final gesture. There is a calming effect accompanied by the liberating feeling to focus on L-I-V-I-N-G.

It’s never easy to broach this subject, why? It is a natural occurrence, a part of “life”. Why have we moved away from this as a society. We surround ourselves with worse subject matter on the daily, why make this taboo? I encourage you to open yourself to the topic, you don’t have to finalize everything, but it’s worth starting the conversation. It gets easier to come back to it.

I wish you a good day. Whilst you craft your… final wishes.

TJ&O

There are times in our lives when we realize that we are smack in the middle of something big. Sometimes the realization is gradual, sometimes it’s a slap in the face. Which ever it is when you realize it, it can be humbling.

Unbeknownst to me when diagnosed with ALS was the orbit I was being propelled into.

This disease has brought so many incredible, brave and inspiring humans into my personal bubble. How could I have gotten so lucky to be in such amazing company. These people run the gambit from pALS, cALS, family, friends, Dr’s, nurses, researchers, advocates and beyond. One common thread connecting all… ending ALS.

Collectively we collide, generating energy that propels each of us on our quest. A quest to vanquish, or at the least tame this beast, ALS. Souls bestowed with weapons unique to each: Knowledge, Empathy, Resourcefulness, Strength, Sacrifice, Tenacity, most of all Love for others. With these weapons it is possible to accomplish our quest.

We fight this beast with every ounce of energy, often to exhaustion; always with our last breath. Does this deter us? NO, it does not, it emboldens us and those surrounding us. I am humbled to be in your company every single day.

Let’s collide! Let’s generate so much energy that ALS has no where to hide. A collision of souls, unified with a single goal in mind…

Obliterate ALS!

TJ&O

There comes a time in every pALS condition when a difficult decision must be made. This relates to making it to the facilities in time, in time for #1.

There are options for pALS such as: pads, diapers, portable or bedside toilets, bedpan’s, urinals, and lastly catheters. I will refrain from discussing all but one, condom catheters. Why because this is what I have experience in, and I’ve been asked to share it.

Like many men I was hesitant to use a condom catheter. I resisted, even as my wife strongly encouraged me. I even convinced myself that a diaper was an adequate alternative. How twisted is that, that I would rather sit in my own piss rather than use a catheter. I was being childish in my obstinacy. The logistics and effort needed to change every time I required it was taxing me and my caregiver. Something had to give, or rather someone…me!

What convinced me to accept this transition in my condition? My wife.

Ultimately she sat me down, well I’m always sitting right, and talked to me bluntly.

“Use the damned catheter or you will sit in your own mess. Behave like a child, I will treat you like one!”

An ultimatum if I ever heard one. I’m obviously taking creative liberty with my recounting the conversation. It was in fact an appeal from her to consider the effect of my hesitance. Not only the logistics of my actions and behavior, but the stress, time and interruptions to the flow of our days.

“You’re being selfish by not using the catheter, you can’t make it to the bathroom in time.”

“ You’re going to get skin breakdown if you don’t change in time.”

“ You aren’t hydrating enough because you’re trying to avoid going, that’s not healthy.”

Do these statements sound familiar?

If they do, then you are being stubborn about using a catheter also. You are genuinely out of excuses or reasons. Do your family and care team a solid, start using it! It beats hunting for an accessible bathroom to change. By the way, the catheter is in fact comfortable and the bag can be hidden while secured to your leg.

So stop being a drip about it, the obvious choice is… To Cath.

TJ&O

Recently in a post I made, regarding having a positive outlook, I was reminded that for many this just isn’t possible. This individual reminded me that it’s not as simple as putting on a smile. For some it takes medication in conjunction with other interventions. They were right obviously, in my desire to express the need for a healthy outlook, I unintentionally marginalized the many who require assistance in reaching a sustainable outlook. For this I did apologize, unintentional or not, it was the right thing to do.

Which brings me to this topic.

Worldwide there is a stigma that needing meds for navigating life’s complexities is considered, well, a weakness. I know first hand as do so many others, it simply and unequivocally takes more strength and courage to seek help.

My family is not immune from this. Having three children who suffered at the hands of their biological parents, we afford them every tool available. I’m willing to put myself out there to bring awareness. I take anxiety meds, not daily but as needed, when my mind just won’t relent it’s grip on me. I suspect, no, I know I will require more help as my ALS progresses, as do so many others.

ALS is just the personal reason I require a chemical relationship with myself. There are way too many reasons, intimately personal reasons, that others require a chemical relationship with themselves. Each of them beyond valid. If you don’t understand this, I’m sorry, your approval is not required.

Life with its steep dives and sharp turns requires that we use every tool at our disposal. It is a multifaceted condition, this life of ours; requiring a multifaceted approach to navigating it the best way we can.

Keep your seat belts on, what ever that may be, there are bumps ahead.

TJ&O