We all have a part in the fight to end ALS! Each one of you pALS & cALS is my Battle Buddy on the Field of Battle!

ALS and feelings of inadequacy…

Having physical functions taken from you can be emotionally devastating. This is only compounded by feelings of inadequacy.

We know its not our fault, but these feelings emerge as we are able to do less and less for ourselves. Many retreat into just existing, more or less because it takes everything to just exist. There are some who take on the mantle of ALS Champions, boundles energy and drive. Most of us fall in between the two above. Doing what we can for ourselves and others, perhaps locally, perhaps beyond.

However the inadequate feelings pop up, most often, respective our families. Its very, very hard to sit by and not be physically engaged. Thank you for saying, “but your here, thats what matters”, it is important, but it’s still painful.

Most of us power through it most days. Our minds are in tact, so we think, collaborate and initiate movements in an effort to be more than a fading human.

I try to do my part but I do get overwhelmed. I am in awe of patients and caregivers that have the capacity to move in the stratosphere of advocacy. Thank you for your efforts to affect positive change for all suffering ALS.

Its ok to focus on yourself and your family. This is “the” most important factor. It’s also normal to feel inadequate, just know that what really matters is that you are present with and for your loved ones.

TJ&O

6 years (October 14)
2180 days
He said, “you have ALS “
I heard, “your dying”

Not a day goes by that I don’t reflect on this exchange. 2-5 years is the prognosis, quite a sobering thought, right? So am I now on borrowed time, aren’t we all. ALS continues to take from me; hands are useless, voice is faltering, legs can still support me and my breathing is adequate.

ALS has drastically altered the course of our family’s life, adapt to live. Most importantly requiring us to open our hearts and minds to others. Others in the sense of those also afflicted and also to support and assistance offered and given. Our paths have intersected with others whose life inspires us; strength and resilience that is both infectious and driven. Driven to create a world without ALS.

We have also experienced profound los, for this disease inextricably intertwines our life to others and their loved ones. Extending our family well beyond blood, impacting our very souls.

So today I don’t observe the anniversary of receiving a fatal diagnosis. But instead the day I was bluntly told by the universe, live you fool, the choice is yours. Yes it is extremely painful and difficult to lose all physical abilities, to be left wit only your mind and eyes to engage with the world. Voiceless, breathless, motionless contemplating the world as it continues to move as always.

To be honest it’s just another day, but that’s the beauty of it, I’m good with just another day.

The Juan and Only

In honor of Hispanic Heritage Month, reposting this interview about ALS or ELA.

https://m.facebook.com/story.php?story_fbid=10222382367821379&id=1633384899&sfnsn=mo

Do YOU know what ALS is?

60% of Americans haven’t a clue what it is.

You mention Lou Gehrig, baby boomers know.

You mention Stephen Hawking, fans of The Big Bang Theory know.

You ask avid football fans who Steve Gleason is, they know.

You mention The Ice Bucket Challenge, a high percentage of chilled participants had no idea why they were actually doing it.

You see, most people suffering from ALS grow isolated; some by choice, most because its hard for others to pause and meet your new pace of life. It takes a great deal of effort and energy to actually get out there and advocate as a patient. Not to mention the effort by family and caregivers to help a patient be relevant to the cause.

So if you run across or meet an ALS patient know this; the sheer will to live, actually live with ALS, is a feat. Take a moment and learn what ALS is. How it takes everything from us. Most importantly learn that we are alive, present and still contributing.

Do you know what ALS is? I do.
If you have a moment I will tell you how I Live with it.

TJ&O

Howdy cow-poke, how’s life treating you today?

There are days when it feels like life is on an 8 second timer. You open your eyes, and just like the gate of a rodeo chute, life takes off. Bucking, twisting, turning, flying through the air. You have but one choice, find your rhythm and ride in unison with the beast.

Eventually it will buck you off, but not before it takes you on the ride of your life. Do you fight the thrashing or do you ride the twisting tornado? Do you adapt to the constant and sudden changes in direction?

8 seconds can and often feels like a lifetime. The success of your ride depends on your gear, your team, and your metaphorical grip on the flank strap. Most importantly your willingness to follow and respond to the beasts lead.

ALS…the longest ride of your life.

TJ&O

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.