Highlighting Danny Voyes's One Leg Up On Advocacy At the NFSD Dysphagia Meeting From 6-10-25

Link referenced on This edition of Alex Garrett's One Leg Up Network: 

https://swallowingdisorderfoundation.com/dysphagia-meeting-live/

Episode Transcript

Speaker 1 (00:02):
Here's your host, Alex Garrett.

Speaker 2 (00:06):
All right, well, I have promised earlier today I am
gonna end the week with some follow up if you will.
As if you remember, we had Danny vois on earlier
in the week to talk about his upcoming presentation, which
was this past Tuesday at the externally led Patient Focused
Drug Development Meeting on dysphasia put on by the National

(00:29):
Foundation of Swallowing Disorders. And thank Tha and C I
was able to, thanks to Danny, get a copy of
his presentation at the symposium, and to end the week,
I want to have him share his story through this
meeting that occurred on Tuesday.

Speaker 1 (00:51):
Imagine being in dank normally for the first seventeen years
of your life. Imagine being able to eat anything everything
you've ever wanted for the first twenty four years of
your life. Now, imagine that you have surgery for a
problem not related to swrolling, and instantly you can no

(01:14):
longer have a glass of water. Seven years later, another surgery,
and now you eat your meals from you tube and
your stomach. Hi, my name is Sandy. I'm thirty four
years old, and I don't have to imagine this. This
is my reality and my story of how I learn

(01:35):
from tooth to food twice. In two thousand and seven,
I had a revision to the shame a several coastpie.
The surgery itself was a success, but every time I
would drink, I would choke. I had a modified barying
swallow study, a test that evaluates swrolling, and all they

(01:59):
told me was that my swallow was weak. The result
of this was that I needed to freaking my ricords
to enacted consistency. At that time, no medical professional told
me or my family that the condition that I had
developed was called phasia, nor did they tell us that

(02:24):
there were treatments that were available to improvement as well.
So for the next seven years, I faithfully thinking all
my liquids, never questioning. In twenty fourteen, after another restraintment vision,
my swallow was severely weakened. In addition, my vocal cords

(02:49):
were lived paralyze in the open position. I was unable
to speak, unable to blay on my own, and unable
to swallow food or drink without it entering my a away.
Doctors inserted a thing to into my stomach and sliced
all home my neck, pointing in a quickly asked of

(03:12):
me to help me breathe. I was transfer to we
HAVE facility and started swallowing therapy using an electro stamination device.
Convided stem electrodes were placed for attached to the to
my throat to send small on myself electrical currents to

(03:35):
my muscles and basically licked them up while I was
hunked up to the electrodes. I was also doing some
manual swallowing exercises, but after two months of therapy, I
was still having trouble swallowing. I was well able to

(03:58):
go home and was able to to heavy trichiosity removed,
but my only source of nutrition was through the to
woman's stomach. Needless to say, my diras I major impact
on my mental health. My mental health got so bad

(04:19):
that I withdrew from college. I cannot stand being a
lout of my peers between classes, watching them eat and
enjoying themselves while I was being fed through we thing too.
After I started counseling from my depression, I started out
help with improving my ability to swallow. With the help

(04:44):
of my mom, I found a local hospital that had
an ill patient speech therapy program that provided the same
other trus stimulation therapy. I have received and reha in
twenty seventeen, three years and many failed monoclock valiant, so

(05:05):
just later my swallow was strong enough that I couldn't
eat soft solids come into small phaecials. I was static. Unfortunately,
in two thousand eighteen, after another surgery, my swallow was
taken from me for a second time. I spent two

(05:29):
months in the hospital within those swallow bravery, I was
again admitted to a medical we have facility which often
bowels him. Unfortunately, due to many complications and more surgeries
while being there, my swallow did not improve. Back to
the thing too, back to special isolation and at any

(05:54):
time point I was ready to start out fishing vits
to them again due to the pandemic, I was able
to attend again my don't help suffering, so I started
virtual counseling sessions. In early twenty thirty more, I was

(06:14):
able to go back to outpatient sweet Sagary. After a
year and a half, I was finally able to start
hating a purid diet. It was a story, but I
was still determined to get back to suffering by a
sized diet that I was previously. I continue I continued

(06:39):
the relative stimulation and in May twenty twenty three, I
was uprated from a puid diet to a miss and
moist diet. This diant requires going to be very soft,
very easy to chew, and easy to form. Me to
a bullet. It was not something biciene, but it wasn't

(07:01):
and it made me happy because I was actually able
to have a more textured consistency instead of a smooth career.
First forward to twenty March twenty twenty four, my sweet
pathologists such at a FEAT test. This is a test

(07:22):
where a small flexible camera is far through my nose
into my fe world to seeing what is happening when
I'm small. Unfortunately, I was not able to ocoate to
his soft and vice side stop, which was my goal.
In August twenty twenty four, I had my last fallow test.

(07:46):
Although I was hoping for more improvement due to some
paralysis in my world, I was told, like continuing that
we would be in vain. However, I in in losen
what I had already achieved. While I was disappointed, I

(08:06):
had to remember that all my hard work had allowed
me to go from a feeling to in a minute
that always dark when it comes to this rasire treatment
is crucial to quality of light, not just nutrition. And

(08:29):
while this rasia is a physical or, it absolutely affects
mental health for me. An ideal comprehensive treatment plan for
this rasia would include both physical treatments like photo sim
and treatment for mental health like teriversal top terrafy once physically.

(08:54):
Area that should be addressed is the poalysis of due
to medical intervention that couldn't make a huge difference. I
am probably why I have achieved what I live in
fear and another surgery will take my one stip forward

(09:19):
and two paice dogs.

Speaker 2 (09:21):
Well, Danny being vulnerable on this podcast is no surprise,
and him telling his story with the National Foundation swallowing
disorders at their meeting on dysphasia, well that was a
pretty big group to be vulnerable with. I applaud you
Danny on that. And I want to highlight this one part.

(09:41):
I know we talk about the mental health, but imagine
not being told there were other options.

Speaker 1 (09:48):
No medical professionals told me or my family that the
condition that I had developed was es phasia. No I
did they tell us that there were treatments that were
available to improvement as well?

Speaker 2 (10:05):
And look, we love our medical professions here the adapting
side of the Alex Garrett podcasts, One Leg Up Network
and whatnot. But I do wish for Danny's mental health
first physical health. They did tell him more early on,
but that's why foundations like this one and like you
OWEAA exists to bring that awareness, to sort of find

(10:28):
a community, if you will, of those who have probably
gone through the same experiences. So again, shout out to
Danny for doing this symposium. And I not only applaud Danny,
I'm proud of Danny for sharing his story on this
big platform earlier this week and having one leg up
on advocacy work as Danny always does, and I'm proud

(10:49):
to highlight this on this edition of the One Leg
Up with Alex Garrett podcast