SMA vlogs

Me and my wife edited a video for literal hours (4+) we are exhausted! However we'll be filming more tomorrow (but it's going to be really Short however it's an important topic!) we hope y'all understand that we'll try and get the most out of that tiny clip!

We thank you for watching our weekly vlogs that we put in so much work towards!

Sincerely, Doc & Emmie ❤️

- written June 4th, 2025

2 days ago | [YT] | 0

SMA vlogs

Time for another discussion about ALS, obviously everyone knows I have ALS and most people know that I've lost a tremendous amount of strength and abilities throughout the 1 year I've been living with ALS

However there are some people that may not know how I got diagnosed or why I was so weak to begin with! So to introduce myself again lol I will begin with saying I'm completely paralyzed from my Mandible jaw down

I cannot move a single limb, I cannot walk, I cannot talk (efficiently) I cannot breathe on my own without the help of a ventilator

I had gotten completely paralyzed in September of 2021 which rendered me at 14% body strength yeah not good! The typical abled bodied strength would be about 200% so I was 186% below the standard body strength, after spending a year locked in and in a coma I had barely recovered enough to get off the Diaphragmatic Pacemaker and ventilator that I was on for 15 months around December of 2022

Shortly after in late 2023 I started experiencing symptoms of ALS: Twitching, slurry speech, trouble breathing, before my symptoms of ALS my lung function was resting around 19% and in one month I had lost 9% of lung function which wasn't normal!

Me and Matthew in early 2024 May went to the doctors to get me checked out and had done many many tests and discovered I had ALS: a motor neuron disease that eventually takes your ability to walk, talk, breathe, eat etc.

That was not good since my body strength had now went to 8.5% total... Now I was 191.5% off the "normal" body strength!

Fast forward 360+ days later to May 28th, 2025 I'm nowweaker than ever before currently my body is resting at the strong powerful 3.3% currently I am 196.7% under the average abled bodied strength

But this also means that my head is now 1% strength and In ALS there's certain points that you require a new form of medical equipment or care for me I have 1 head this now means that I need a permeant head strap for every single time I'm in the car 🚗, I'm not weak enough yet to the point I need a permanent head strap just for moving around I just need it for car rides

As of now my head cannot sustain a simple bumpy card ride.

To all the gloriously strong people who have necks of steel thank you for reading, From a weak tiny shrimp, Doc ❤️

- written May 28th, 2025

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1 week ago | [YT] | 3

SMA vlogs

Hey everyone! Updating again... Lol nothing bad this time tho! So that's a start

Today I hit 1 year with ALS which is honestly baffling to me!

So in honor of it I wrote a tiny poem (to the best of my ability) about time & ALS the reason why I decided to write about "Time & ALS" is simply because ALS runs with time even the diagnosis rate involves time

Every 90 minutes someone get diagnosed with ALS, and every 90 minutes someone passes away from ALS

So to you I bring you "Time & ALS"

Time moves, but slower now, it seems,
In echoing halls of broken dreams.
Where once the body danced with grace,
Now stillness grows in time’s embrace.

ALS—three letters, sharp and cold,
A story whispered, rarely told.
It steals in quiet, cruel and deep,
Turning motion into sleep.

The ticking clock, a measured sound,
Marks battles fought without a round.
The hands won’t lift, the feet won’t run,
But still the soul shines like the sun.

Each breath a triumph, word a flame,
A fight to hold a fading name.
Time, once a thief, becomes a friend,
To count each moment to the end.

And though the voice may lose its tone,
The silence speaks: *You’re not alone.*
For time cannot erase the spark,
That lingers even in the dark.

In every glance, in every tear,
Love bends the hours, draws them near.
ALS may still the hands and eyes—
But not the heart, and not the skies.

I hope you enjoyed! Honestly it's been baffling to me that it's been a year and crazy long and fast year

To ALS Fuck you 🖕🏻but to everyone else I thank you all for being apart of this crazy wild journey, thank you ❤️

Sincerely, Doc

- written May 27th, 2025

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1 week ago (edited) | [YT] | 0

SMA vlogs

I'm finding a pattern where I am constantly talking about Bad things...

I'm still not changing that on Sunday afternoon (May 25th) after having a lovely dinner with friends and family, devouring everything in sight and playing a fun game

It was getting close to the time we typically leave I had started to feel somewhat breathless and a bit nauseous, weird but ok so I go to the bathroom thinking maybe that'll help by getting some air and breathing a bit

However everything intensified heavily I started Heavy breathing and somehow saliva started to accumulate at a rapid speed

I was sweating and swallowing as fast as I could I was doing everything and anything in my power not to vomit

This filling kept on for an agonizing 10 minutes after all the pain and quite literal sweat

I.... Burped, not as courageous as you might think however for me finally getting the relief of not about to throw the hell up was amazing and I can proudly say as I'm almost 1 year into my ALS diagnosis (literally 1 day) and the fact that my 8% functioning lungs can expel air!

Hooray for victory that I was never expecting that night! (Even though the photo does not express it)

- written May 26th, 2025

1 week ago (edited) | [YT] | 1

SMA vlogs

Our newest vlog coming out May 25th, 2025 will be a very well edited vlog (in our opinion) please get ready!

- written May 20th, 2025

2 weeks ago | [YT] | 1

SMA vlogs

Y'all might be wondering why we uploaded a video late at night rather than our typical 5 Pm Est time, nothing major just our editing software wasn't saving our edited video to our camera roll so we had waited for it and then realized it was way past the typical time!

So inevitably we scheduled the video later!

Thanks for being patient with us 🙏🏻- Doc & Emmie

- written May 18th, 2025

2 weeks ago | [YT] | 0

SMA vlogs

Happy mother's day 💐❤️! Yes I may or may have not gotten emotional 4 times already... But that doesn't matter (lol) I'm glad everything is going well as of right now happy mother's day to all the wonderful mother's out there!

- written May 11th, 2025

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3 weeks ago | [YT] | 1

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9 months with ALS my head is 6% and my arm strength is 3.5% and my breathing is 21% and the rest of my legs and core is 0% thanks Soo much for the support

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4 weeks ago | [YT] | 0

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"Breathing" something I've taken for granted Several times

I have had many problems with my breathing over the years of my SCI (spinal cord injury) and Cystic fibrosis, from surgery, intubation, Abuterol, Inhaler, ventilator, Diaphragmatic Pacemaker etc.

I've had it all, as you can only imagine my shitty lungs compared to a normal set of lungs isn't exactly the greatest and when you add ALS to the mix that only makes it scarier!

I have 8% lung function and require a concution of medications and a ventilator to help me breathe on a day to day basis, Keep in mind I am able to breathe on my own however that function goes away when I stop thinking about breathing

While I have the function to breathe and I have lung function my diaphragm isn't exactly "connecting" with the rest of my body, my nerves can only pass through my C3 vertebra a tiny bit while the rest of my nerves cannot pass, this gives my the ability while thinking about it to breathe on my own

This is huge but also not helpful at night when I sleep I am not thinking of it so that means if my ventilator were to ever come off during the night it would make a painfully ear bleeding alarm that anyone would be sure as hell be able to wake up from.

While I've had this happen to me it's not the end of the world and typically I am ok!

However in the early morning hours of May 4th (2:00Am) I noticed I no longer heard my ventilator running... My ventilator had shut off unexpectedly and I couldn't get it back on, this is the scariest part of having a ventilator and thankfully after the horrible situation I was able to get on another ventilator that I have

It just sounds different and works a tad bit differently however I am doing ok and doing well and I am reporting that my lungs are fine!

To people with healthy lungs this is my nightmare living with ALS & a Spinal Cord Injury 🫁; Doc

-written May 4th, 2025

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1 month ago (edited) | [YT] | 0

SMA vlogs

Hey everyone I'm officially done with Chemo!!!! That's right you all read that correctly!!

This is so awesome and I'm so happy to be done! Please check out our most recent video! About me ending chemo

Thank you all for being here this entire time! Since Chemo round #1 now Ending to chemo round #100... , Doc ❤️

- written April 26th, 2025

1 month ago | [YT] | 1