WTF are families or caregivers of a pALS to do, when the professionals hired to care for said pALS, abandon their post?

Really! So you’re telling me an untrained, unpaid lay-person has more integrity than the effing professional! This should be a testament to the sheer magnitude, workload, intensity and dedication required of a cALS. Does this not resonate loudly as to the need for the general public to fucking get a clue about ALS.

Seriously a fellow pALS who is trached was abandoned by their nurse. No warning, no notification to the agency, just up and left. As a previous health care professional, this is unfathomable to me. How can we as a terminal community overcome the sheer ignorance and disregard for our lives. Failed by government three letter agencies and apparently our care is too much for a professional; what next!

To the pALS it happened to, I’m so sorry you had to experience this. It is utterly unacceptable. I pray this never happens again, unfortunately I believe it is more prevalent than we realize.

We must, as a society do better, we simply must.

Why We Fight to Live

I was reminded yesterday why so many pALS fight so hard to continue living, given the hell that is ALS. A friend and fellow pALS shared that his eldest child married recently. Something he feared ALS would rob from him. Yet by refusing to let ALS dictate his life, he sets the course.

Moments create memories, memories are the building blocks of our lives. We build our lives by being present, sharing our time with others and being there for other’s moments. So we fight to be present, to have our life’s moments witnessed, and to witness others moments.

We can’t take our physical possessions, our wealth and who knows if we take our memories beyond. But moments, moments are the legacy we leave for our loved ones, so we fight.

We fight to build memories from the moments that we are present in.

TJ&O

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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!

//Signed//
Your pALS

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But you’re still walking and have the use of your arms, whisper~~”I think they are faking it”.

You’ve been tested time and time again and still no diagnosis, are you sure it’s not mental?

I have to admit I can certainly understand scepticism when the professionals we look to can’t label what ails us (Neurologist).
BUT! Who in their right fucking mind would want to fake having ALS, let alone actually having it! Yes disabled parking placards are prolific and we are often reminded, “we can never know what invisible disabilities people have”. Why then question someone suffering what not be undiagnosed ALS.

Are you inhabiting our bodies? Are you able to feel what we feel, know our inner thoughts? Can you know how many times we have dropped something, fallen after tripping or choked on water alone. Have you experienced uncontrollable emotional breakdowns that leave you spent, not to mention questioning your own sanity?

Until you personally experience these, please keep your ignorant and insensitive thoughts to yourself. Do you know how many people suffer for years until a neurologist finally utters “you have ALS”. They don’t need anyone belittling them because “a specialist” isn’t 100% positive it’s ALS. Did you know the average Neurologist in the US will encounter 1, one, uno, ALS patient in their careers. Let that sink in.

Sorry folks just had to, I’ve seen too many posts and comments regarding persons suffering neurodegenerative symptoms being persecuted by of all people, loved ones.

TJ&O

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So, some with ALS indulge in cocktails/brews and such, while others don’t.
And that’s alright, neither is wrong.

However, as ALS progresses the method by which one consumes evolves.

Allow me…
Initial- normal drinking.
Modest- chin tuck perhaps with a straw.
Moderate- with straw, perhaps type of beverage alters, due to throat sensitivity.
Advanced- delivered through PEG by brave family or friends. Good friends will help you even in public, lol.

Another aspect that changes is the math.
No longer do you indulge in: glasses, cans, bottles or tumblers. Not even in ounces.

You now indulge in cc’s or milliliters (ml). As the typical method requires the use of an irrigation syringe.

The decision to continue enjoying the occasional beverage is entirely personal.

Compulsory PSA:

Just remember to “infuse responsibly”.

Also don’t drink and powerchair.

TJ&O

My legs can still support me but not for long, and although I can move them still, they betray me with spasms, cramps and twitches. Now the accessory muscles supporting my right knee are weakening to the point of giving out on me. Making me fearful of walking.

My hands cant hold on to things, a tissue is a workout, I can do two reps and I’m done. When I am able to grasp something my hands won’t let go. I’m screaming at them internally, but they wont budge. My thumbs are the most obstinate, damn thumbs!

My tongue of late cramps! Yeah you heard that right, my tongue, what the hell! This puts a new perspective on the phrase “tongue tied”. Not good for someone who has allot to say… just saying.

My mind is in tact, thank God, at least I think it is? Yet my thoughts often wander to dark places, making me question my existence and the point of trying. I allow myself to meander through this forest of despair, knowing that I can navigate out by focusing on my family. It’s ok to wander, just stay tethered to hope.

Just a few of the oxymoronic aspects of ALS.

Oh yeah, one last thing, I hate ALS, but I love the people it has brought into my life.

The Juan and Only

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In the summer of 2017 our family moved into a rental home as our new ADA accessible home was built. During this time my ALS had taken my ability to drive, so my oldest son became my caregiver. Given that I was home for the summer with all my kids, four, I decided to create a fictional account of that summer. Thus was born the short story, “Domestic Hostage”.

I hope you enjoy it, it was originally posted daily as I wrote it, on Facebook. Follow the link to read it.

https://www.dropbox.com/s/5jnuc5mmxfkbdvi/Domestic%20Hostage.pdf?dl=0

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NGO’s
(I’m only familiar with US NGO’s)

Today I would like to focus on the importance and effectiveness of NGO’s, which stands for nongovernmental organizations. Just another fancy word for nonprofits. A and prominent one is the Gleason Foundation established by Steve Gleason and his family. However there are others such as Augie’s Quest, every 90 minutes, ALS worldwide and many more. ALS TDI to my knowledge is the largest research organization focused solely on muscular neurodegenerative conditions, primarily ALS. Then there is I Am ALS, iamals.org , a fledgling yet impactful organization.

This is only a short list there are many more and there are some that are just Grassroots organizations in the community. Of course there are countless individual local fundraisers taking place all the time in order to raise much-needed funds to purchase an individual wheelchair , wheelchair accessible van and perhaps many other needed medical devices.

With the current Healthcare environment as it is it is very uncertain weather any strides that have been made in recent years, in support of terminally ill patients will remain in place. It’s already extremely difficult to navigate through Healthcare policy and receive the necessary benefits. It’s even more difficult to acquire access to assistive devices and/or funds to purchase those devices. Eventually an ALS patient will need a lot of support and many medical and communication devices in order to remain a viable member of the family and feel connected to the world around them.

I’ve mentioned it before but did you know that most patients refuse to get a tracheotomy primarily due to the cost of maintaining a patient on a ventilator. In past years being on the ventilator was one of the last stages of ALS. Nowadays technology has become so Advanced that it has become not necessarily simpler but more effective to remain on a ventilator. New devices and attachments make it more manageable to safely maintain the tracheotomy and keeping a loved one around longer.

However the second aspect of this decision has to do with the burden on the family and caregivers due to the patient needing 24-hour support. Many patients don’t want to burden their families both emotionally, physically and financially. This speaks volumes as to the resilience and strength of the individuals on both sides of the spectrum. But it also speaks volumes about our great nation, one of the wealthiest in the world and how it can’t get its head out of its ass with respect to Health Care. This is why every year we have to roll on Capitol Hill and show our elected officials the face of ALS and it’s impact. Unfortunately the majority of the elected officials don’t in fact meet with The Advocates, it is their staff that engage.

So as you can see NGO’s are essential to fill the gap that hour convoluted often impossible to navigate Healthcare System creates. So when the time comes to put your money where your mouth is please consider donating to local fundraisers, nonprofits that help patients and Families and ultimately organizations that are conducting research in the hopes of finding the Cure. Get out there and be active if not for ALS to whatever cause is near and dear to your heart. I know ALS isn’t the only condition out there, there are so many.

However ALS continues to have a small footprint but this is a big BUT! Did you did you know that statistically ALS and other MND conditions are projected to grow exponentially in the future. So consider this thought, support those in need and those conducting research now so that one of your future family members or a current love one can have hope in being treated or cured in the future. It may not be a National concern at this moment but if left unchecked and underfunded it can become one

Show a non-profit some love…

The Juan and Only

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