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

What choices do you mean Juan and Only?

Well I wish I could say, choices in treatments! But that is still a dream.

What I am referring to are choices in our daily living activities.

I for one have failed from time to time and created unsafe scenarios. I guarantee you as a pALS have done the same. What is the cause of this? Control, stubbornness, fear? I venture to say all the above.

These choices, we must remember, effect not just us, but our care team. For example:

Wearing a catheter, which I resisted, needles to say, it is such a “relief” to everyone! Not having to rush or fear an accident.

Exerting yourself needlessly, i.e. insisting on transferring independently at risk of falling or exhausting yourself.

Using the walker/rolator even after you fall. The fall was the warning that your limbs are no longer able to support you or control the walker.

Three examples of situations that put us at risk, but also scare the crap out of our caregivers. Not to mention the scolding we are in for,😉. I’m sure there are more examples to add and please do, to help us identify them in advance.

There are also many big choices to make, very personal choices. However these daily ones are harrowing now. Ultimately we need to consider others in our daily activities and the choices we make. Don’t listen to that little voice when it’s whispering, “you can still do it”.

When you come too, you may not be where you fell, but in the back of an ambulance.

Make good choices.
Make safe choices.

TJ&O

It has been said that I can be stubborn and hard headed. This has in fact been evident in some of my transitional phases with ALS. For example delaying the use of certain tool’s or interventions. Today instead of my wife convincing me to adopt a tool it was another voice.

Who’s voice, you ask? Well, it was mine.

Some time ago, while being showered, or rather after my shower, I was struck with unexplainable fear, genuine dread. I was paralyzed with fear as I stood in the shower attempting to walk out with my rolator (walker). What was it that filled me with dread? Falling, I lost my confidence in my own legs, in being able to control the rolator. I literally couldn’t make my legs move.

I realized after reflecting on the incident, that it was my body speaking to me. This was not a whisper in my ear. It was a clear resounding message from me to me..

So thereafter I broke down and used the shower wheelchair. A multifaceted contraption that can double as a bedside toilet. This allowed a safe shower, minimizing my anxiety and reducing exertion. I know, I should have adopted this much earlier, but I was reluctant to give in, stubborn.

My message here is; listen to your inner voice and your body when they speak to you.

Especially when they use fear to make you listen. Don’t delay or avoid safe practices when it comes to your ALS progression. The last thing I want is to traumatize my family, by having to pick up dad from the shower floor.

TJ&O

Dropping a cup, how did that happen?

Dropped another cup, weird, shake my hands and look at them, they look normal…

Hmm, my left hand is weak, weird, I hadn’t noticed the hollow area at the base of my thumb.

Now my right hand is weak, what the hell.

After ALS diagnosis the hands experienced the following:

-More muscle loss
-Weak to the point of not able to grasp a tissue
-My fingers don’t respond to my brain
-I can’t bend them
-Can’t spread them
-Can’t open them
-My two index fingers are stuck straight
-My palms are flat
-My wrists are weak (hands flop when I move)

Now my hands are useless, so my family are literally my hands.

I miss my hands, even though I still have them. I miss what they used to do for me and for others.

TJ&O