Caregivers of ALS patients do so much, often as the sole provider for their loved one. Very often due to the patient not wanting to allow anyone else to care for them. This makes it nearly impossible for the caregiver to get a break from the patient, causing burn out. Extended family need to understand they need to step in and help the patient realize that others will need to be allowed to help. It’s an uncomfortable conversation but very necessary.

Just to give you an idea of what it’s like. Imagine having a pot of water on the stove, but you can’t let it boil over, can’t let it dry up and you can’t turn it off. A life depends on the pot continually boiling. How and when do you rest?

Daily routine:
Wake
Get help out of bed (stretch)
Enjoy a cup of coffee (with a straw)
Watch morning news
Breakfast
Morning meds
Shower (sometimes sponge bath)
Flush feeding tube, clean tube wound
Apply condom catheter
Get dressed
Check social media & emails
Run errands go to appointments (pre-COVID now via telehealth)
Have lunch
Prep for dinner
Wait for kids to get home (pre-COVID)
Direct kids on chores and making dinner
Dinner
Relax (tv)
Prep for bed (take meds, remove catheter)

All of this and I am not able to do any of it on my own. Every step requires someone to help me. I can’t get out of bed on my own, shower, eat, meds, bathroom, drive etc. Every person that functions as a caregiver has their patients needs, their personal needs and any other responsibilities that life brings. Burnout is very real for many caregivers and very dangerous.

Caregivers, unsung heroes and often unknowingly abused by their patient. I say unknowingly because the patient loves them but fears anyone else caring for them. Additionally the caregiver has an extremely difficult time letting anyone stepp in, they feel as though they are abandoning their loved one. It is truly a double edged sword that cuts to the soul. Sometimes it can not be resolved; fear, guilt, but most of all the love, can’t be set aside, not for a moment. Who can argue with this.

TJ&O

ALS is taking my body, one nerve at a time. It started with uncontrollable twitches. An EMG reflected a symphony of indistinguishable static to me, but to the neurologist… a familiar dirge. Since then it continues to take one muscle fiber after another due to motor neuron death causing atrophy. With this comes loss of limb function, strength and any semblance of dexterity.

As if to try and scare me ALS leans in and wispers in my ear “I’m going to take everything from you, even your voice and your last breath.”

Ha! I burst out laughing… are you serious! I have teenagers! ALS cowards back into the receses of my mind, for now.

What is ALS? It is a marathon that you run with Death as your pacer. No rest or water breaks mile after mile. One can only feed on hope and love until you cross the finish line.

TJ&O

Living with ALS is difficult, daunting and demanding. There comes a time when we wonder if it’s worth the effort to continue fighting. The inner dialogue is tormenting. Our loved ones, always our focus, regarding their commitment and dedication to our needs. Often debating, in our minds, “am I fighting for them or me?”. The answer is, both!

Weather we have a voice to convey our desire or we use our eyes to express; what we do in essence is ask for permission.

Permission to either continue fighting or not. Permission to adopt or forego the next intervention or treatments. It’s not permission that we need, it’s understanding. Understanding that we are afraid. Afraid of losing ourselves to ALS, losing control of our body. Unfortunately with ALS this is inevitable.

So what are we left with? Our minds, a double edge sword. Able to propel us toward joy or despair, a narrow winding road. Best navigated by straddling the median. Yes it requires constant corrections to avoid drifting.

So it’s not permission you need, it’s understanding and acceptance.

Safe travels friends!

TJ&O

What do these words mean to you?

Pretty straight forward, right?

What if this statement had the potential to put your life at risk? Regardless of the events precipitating any loss of life by people of color, it is and continues to be tragic. Imagine a scenario like many others, but now insert a physical limitation preventing someone from complying with authorities.

This is precisely what Maceo is referring to in the image above. When I first saw this posted on Twitter, I exclaimed, “ Oh my God, thank you for sharing this troubling reality!”. However the more it simmered in my mind, I began to ask, “WTF is wrong with this world?”.

How is it that a person with an incurable, terminal condition, ALS, has to be concerned with such an ugly reality. I often say, “No one gets ALS until they get it”. Well Maceo, until I read your statement, I didn’t get it.

To have ALS is bad enough. To have treatments for ALS within reach, but denied is criminal.
But having ALS raise your risk of racially motivated harm is sickening.

Why, why, why…I Just Can’t!

TJ&O

ALS Life…

The Tongue 👅.

You can choose to hold it, most don’t to their detriment.

You can bite it, again many fail to do this with adverse effects.

It is a muscle fundamentally. It aids in speech, chewing, swallowing and digestion.

It is a voluntary muscle. What disease effects voluntary muscles? ALS!

Yes this dreadful disease takes your ability to use your tongue effectively. This effects one’s ability to do a number of things.

-Manipulate food away from the back of your throat, causing choking episodes.

-The tongue can experience fasciculations, yes! Those pesky, annoying muscle twitches. It twitches like all the time. Straight out of a sci-fi movie, it looks like it has a life of it’s own.

-Speech is affected; as your tongue slowly loses conscious control your speech becomes slurred, indistinguishable.
This is compounded by the fact that the soft palate is affected by ALS also, altering the voice.

As all the above progress our voices are lost, we lose our ability to eat, swallow and are at increased risk of choking.

Just another random thing ALS takes that most folks aren’t aware of.

The tongue; a gift, a curse, a tool or a weapon. Regardless, when it fails to function, your life changes.

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

• 

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