Latest / OneLegUpAlex Media / Highlighting Danny Voyes's One Leg Up On Advocacy At the NFSD Dysphagia Meeting From 6-10-25 (Aired 6-13-25)

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Highlighting Danny Voyes's One Leg Up On Advocacy At the NFSD Dysphagia Meeting From 6-10-25 (Aired 6-13-25) · OneLegUpAlex Media

• 0:02
  Speaker 1: Here's your host, Alex Garrett.
• 0:06
  Speaker 2: All right, well, I have promised earlier today I am
• 0:09
  Speaker 2: gonna end the week with some follow up if you will.
• 0:12
  Speaker 2: As if you remember, we had Danny vois on earlier
• 0:15
  Speaker 2: in the week to talk about his upcoming presentation, which
• 0:20
  Speaker 2: was this past Tuesday at the externally led Patient Focused
• 0:24
  Speaker 2: Drug Development Meeting on dysphasia put on by the National
• 0:29
  Speaker 2: Foundation of Swallowing Disorders. And thank Tha and C I
• 0:35
  Speaker 2: was able to, thanks to Danny, get a copy of
• 0:38
  Speaker 2: his presentation at the symposium, and to end the week,
• 0:42
  Speaker 2: I want to have him share his story through this
• 0:48
  Speaker 2: meeting that occurred on Tuesday.
• 0:51
  Speaker 1: Imagine being in dank normally for the first seventeen years
• 0:56
  Speaker 1: of your life. Imagine being able to eat anything everything
• 1:01
  Speaker 1: you've ever wanted for the first twenty four years of
• 1:05
  Speaker 1: your life. Now, imagine that you have surgery for a
• 1:09
  Speaker 1: problem not related to swrolling, and instantly you can no
• 1:14
  Speaker 1: longer have a glass of water. Seven years later, another surgery,
• 1:20
  Speaker 1: and now you eat your meals from you tube and
• 1:23
  Speaker 1: your stomach. Hi, my name is Sandy. I'm thirty four
• 1:27
  Speaker 1: years old, and I don't have to imagine this. This
• 1:31
  Speaker 1: is my reality and my story of how I learn
• 1:35
  Speaker 1: from tooth to food twice. In two thousand and seven,
• 1:41
  Speaker 1: I had a revision to the shame a several coastpie.
• 1:45
  Speaker 1: The surgery itself was a success, but every time I
• 1:49
  Speaker 1: would drink, I would choke. I had a modified barying
• 1:54
  Speaker 1: swallow study, a test that evaluates swrolling, and all they
• 1:59
  Speaker 1: told me was that my swallow was weak. The result
• 2:05
  Speaker 1: of this was that I needed to freaking my ricords
• 2:08
  Speaker 1: to enacted consistency. At that time, no medical professional told
• 2:14
  Speaker 1: me or my family that the condition that I had
• 2:18
  Speaker 1: developed was called phasia, nor did they tell us that
• 2:24
  Speaker 1: there were treatments that were available to improvement as well.
• 2:29
  Speaker 1: So for the next seven years, I faithfully thinking all
• 2:35
  Speaker 1: my liquids, never questioning. In twenty fourteen, after another restraintment vision,
• 2:43
  Speaker 1: my swallow was severely weakened. In addition, my vocal cords
• 2:49
  Speaker 1: were lived paralyze in the open position. I was unable
• 2:54
  Speaker 1: to speak, unable to blay on my own, and unable
• 2:59
  Speaker 1: to swallow food or drink without it entering my a away.
• 3:04
  Speaker 1: Doctors inserted a thing to into my stomach and sliced
• 3:09
  Speaker 1: all home my neck, pointing in a quickly asked of
• 3:12
  Speaker 1: me to help me breathe. I was transfer to we
• 3:17
  Speaker 1: HAVE facility and started swallowing therapy using an electro stamination device.
• 3:24
  Speaker 1: Convided stem electrodes were placed for attached to the to
• 3:29
  Speaker 1: my throat to send small on myself electrical currents to
• 3:35
  Speaker 1: my muscles and basically licked them up while I was
• 3:41
  Speaker 1: hunked up to the electrodes. I was also doing some
• 3:46
  Speaker 1: manual swallowing exercises, but after two months of therapy, I
• 3:53
  Speaker 1: was still having trouble swallowing. I was well able to
• 3:58
  Speaker 1: go home and was able to to heavy trichiosity removed,
• 4:03
  Speaker 1: but my only source of nutrition was through the to
• 4:07
  Speaker 1: woman's stomach. Needless to say, my diras I major impact
• 4:16
  Speaker 1: on my mental health. My mental health got so bad
• 4:19
  Speaker 1: that I withdrew from college. I cannot stand being a
• 4:24
  Speaker 1: lout of my peers between classes, watching them eat and
• 4:29
  Speaker 1: enjoying themselves while I was being fed through we thing too.
• 4:35
  Speaker 1: After I started counseling from my depression, I started out
• 4:39
  Speaker 1: help with improving my ability to swallow. With the help
• 4:44
  Speaker 1: of my mom, I found a local hospital that had
• 4:48
  Speaker 1: an ill patient speech therapy program that provided the same
• 4:53
  Speaker 1: other trus stimulation therapy. I have received and reha in
• 5:00
  Speaker 1: twenty seventeen, three years and many failed monoclock valiant, so
• 5:05
  Speaker 1: just later my swallow was strong enough that I couldn't
• 5:10
  Speaker 1: eat soft solids come into small phaecials. I was static. Unfortunately,
• 5:20
  Speaker 1: in two thousand eighteen, after another surgery, my swallow was
• 5:25
  Speaker 1: taken from me for a second time. I spent two
• 5:29
  Speaker 1: months in the hospital within those swallow bravery, I was
• 5:33
  Speaker 1: again admitted to a medical we have facility which often
• 5:37
  Speaker 1: bowels him. Unfortunately, due to many complications and more surgeries
• 5:44
  Speaker 1: while being there, my swallow did not improve. Back to
• 5:49
  Speaker 1: the thing too, back to special isolation and at any
• 5:54
  Speaker 1: time point I was ready to start out fishing vits
• 5:58
  Speaker 1: to them again due to the pandemic, I was able
• 6:02
  Speaker 1: to attend again my don't help suffering, so I started
• 6:09
  Speaker 1: virtual counseling sessions. In early twenty thirty more, I was
• 6:14
  Speaker 1: able to go back to outpatient sweet Sagary. After a
• 6:19
  Speaker 1: year and a half, I was finally able to start
• 6:23
  Speaker 1: hating a purid diet. It was a story, but I
• 6:29
  Speaker 1: was still determined to get back to suffering by a
• 6:32
  Speaker 1: sized diet that I was previously. I continue I continued
• 6:39
  Speaker 1: the relative stimulation and in May twenty twenty three, I
• 6:44
  Speaker 1: was uprated from a puid diet to a miss and
• 6:48
  Speaker 1: moist diet. This diant requires going to be very soft,
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  Speaker 1: very easy to chew, and easy to form. Me to
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  Speaker 1: a bullet. It was not something biciene, but it wasn't
• 7:01
  Speaker 1: and it made me happy because I was actually able
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  Speaker 1: to have a more textured consistency instead of a smooth career.
• 7:12
  Speaker 1: First forward to twenty March twenty twenty four, my sweet
• 7:17
  Speaker 1: pathologists such at a FEAT test. This is a test
• 7:22
  Speaker 1: where a small flexible camera is far through my nose
• 7:27
  Speaker 1: into my fe world to seeing what is happening when
• 7:30
  Speaker 1: I'm small. Unfortunately, I was not able to ocoate to
• 7:35
  Speaker 1: his soft and vice side stop, which was my goal.
• 7:41
  Speaker 1: In August twenty twenty four, I had my last fallow test.
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  Speaker 1: Although I was hoping for more improvement due to some
• 7:50
  Speaker 1: paralysis in my world, I was told, like continuing that
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  Speaker 1: we would be in vain. However, I in in losen
• 8:00
  Speaker 1: what I had already achieved. While I was disappointed, I
• 8:06
  Speaker 1: had to remember that all my hard work had allowed
• 8:11
  Speaker 1: me to go from a feeling to in a minute
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  Speaker 1: that always dark when it comes to this rasire treatment
• 8:22
  Speaker 1: is crucial to quality of light, not just nutrition. And
• 8:29
  Speaker 1: while this rasia is a physical or, it absolutely affects
• 8:35
  Speaker 1: mental health for me. An ideal comprehensive treatment plan for
• 8:42
  Speaker 1: this rasia would include both physical treatments like photo sim
• 8:47
  Speaker 1: and treatment for mental health like teriversal top terrafy once physically.
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  Speaker 1: Area that should be addressed is the poalysis of due
• 9:01
  Speaker 1: to medical intervention that couldn't make a huge difference. I
• 9:07
  Speaker 1: am probably why I have achieved what I live in
• 9:12
  Speaker 1: fear and another surgery will take my one stip forward
• 9:19
  Speaker 1: and two paice dogs.
• 9:21
  Speaker 2: Well, Danny being vulnerable on this podcast is no surprise,
• 9:24
  Speaker 2: and him telling his story with the National Foundation swallowing
• 9:29
  Speaker 2: disorders at their meeting on dysphasia, well that was a
• 9:34
  Speaker 2: pretty big group to be vulnerable with. I applaud you
• 9:37
  Speaker 2: Danny on that. And I want to highlight this one part.
• 9:41
  Speaker 2: I know we talk about the mental health, but imagine
• 9:45
  Speaker 2: not being told there were other options.
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  Speaker 1: No medical professionals told me or my family that the
• 9:53
  Speaker 1: condition that I had developed was es phasia. No I
• 9:58
  Speaker 1: did they tell us that there were treatments that were
• 10:02
  Speaker 1: available to improvement as well?
• 10:05
  Speaker 2: And look, we love our medical professions here the adapting
• 10:08
  Speaker 2: side of the Alex Garrett podcasts, One Leg Up Network
• 10:12
  Speaker 2: and whatnot. But I do wish for Danny's mental health
• 10:16
  Speaker 2: first physical health. They did tell him more early on,
• 10:20
  Speaker 2: but that's why foundations like this one and like you
• 10:24
  Speaker 2: OWEAA exists to bring that awareness, to sort of find
• 10:28
  Speaker 2: a community, if you will, of those who have probably
• 10:31
  Speaker 2: gone through the same experiences. So again, shout out to
• 10:34
  Speaker 2: Danny for doing this symposium. And I not only applaud Danny,
• 10:38
  Speaker 2: I'm proud of Danny for sharing his story on this
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  Speaker 2: big platform earlier this week and having one leg up
• 10:44
  Speaker 2: on advocacy work as Danny always does, and I'm proud
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  Speaker 2: to highlight this on this edition of the One Leg
• 10:52
  Speaker 2: Up with Alex Garrett podcast