You have read time and time again from me and many others how strong ALS patients are. There is truth behind this. But where does that strength come from?

Are ALS patients just wired differently? I venture to say no, we are not. We simply choose this outward affect for several reasons, let me remind you these are my thoughts.

For me the reasons are: Anger, Fear, Resentment, Obstinacy and a slew of many other feelings and emotions.

Anger because I don’t deserve this, neither does anyone else. This is a dreadful way to live, knowing there is nothing you or your loved ones can do. Angry because my wife, kids and parents don’t deserve to live with a ticking time bomb that is ALS. Angry because so many organizations have the ability to make drastic impacts on ALS, yet money, politics and outdated health care policies stymie progress.

Fear, because, well it obvious; because its scarry as shit to live with ALS. Im afraid of waking up trapped in my body. Afraid of leaving my family with a gaping hole in their hearts. Scared as hell of struggling for every breath as my condition progresses. Scared that a cure or viable treatment won’t happen in my lifetime.

Resentment, because anger and fear create it. I accept my condition but I resent it. I resent the physical limitations even though my mind is in tact. I want to do… but simply can’t command my body to do so. I resent becoming a burden. I resent that my family resents me, well not me but my ALS. Yes I know they don’t see me as a burden, but I will feel this way until I’m gone.

Obstinacy, why this? Because I have learned that ALS has caused my stubbornness to surface. And I will sure as hell not let ALS dictate our lives, influence yes, but not dictate! I will try every therapy availed to me to kick ALS’s ass. I choose to live for myself and my family in spite of ALS.

Yeah we pALS may come across as hyper-resilient, but as you can see there’s a fire fueled by so many internal factors. Factors that create the outward appearance that we are unstoppable. Just know and understand that although our outward affect is strength we still need You and your support, we draw strength and courage from it.

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Stay strong my friends…

The Juan and Only

Article below

Main takeaway for me:

The research is population based. Inherently this is flawed due to the fact that not all countries have the infrastructure to accurately account for ALS prevalence in their population. Leading to once again systemic under-reporting of this horrible disease. Even in the US ALS is captured predominantly on a voluntary basis. This is equivalent to asking the fox how many chickens are in the coupe, laughable.

I get that ALS is categorized as rare and not worthy of the attention other conditions, the science supports this stance. However… however! The financial toll this particular disease creates on families is without comparison. Until this burden is impactful to the government it will continue to remain the burden of families to navigate the cost and lack of viable treatments.

At this point in time it appears that treatments would lead to reducing the profit margin for services and goods for pALS. It appears this way, I prefer to think that there is not a Cabal scheming to keep us from treatments; that’s only in the movies.

I do believe that the science has not coalesced with the heart and soul of ALS to break down barriers standing in the way of viable treatments. What’s the solution? I wish I knew.

Make your own conclusion, read, digest, interpret.

TJ&O

https://www.karger.com/Article/FullText/493386

ALS and choices.

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, affect 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 to transfer 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

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