Some Days I Break Down: Dylan on Recovery from Locked-In Syndrome

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8d ago 52:34

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Recovery from Locked-In Syndrome: Dylan’s Journey of Strength and Hope

Introduction

When we hear about stroke recovery, we often imagine slow progress, physical therapy, and determination. But for some survivors, the road begins at an even more unimaginable place: locked-in syndrome.

Dylan Alford’s story shines a light on the reality of recovery from locked-in syndrome, a journey filled with emotional battles, small victories, and relentless courage.

What Is Locked-In Syndrome?

Locked-in syndrome is a rare and severe neurological condition where a person is conscious and aware but unable to move or speak due to paralysis of nearly all voluntary muscles. It’s often caused by a brainstem stroke, as was the case for Dylan.

Key fact: Recovery from locked-in syndrome varies greatly between individuals. Progress may be slow, but meaningful improvements are possible, as Dylan’s story shows.

Dylan’s Story: From Locked-In to Rebuilding Life

Dylan experienced his third stroke, a brainstem stroke, in 2023, which resulted in locked-in syndrome for two weeks. Trapped in his body, fully conscious but unable to move, he began a recovery journey that continues to this day.

Over the months that followed, Dylan worked tirelessly to regain basic functions:

Speech: With the help of a nasal device and intensive therapy, Dylan can now speak, despite ongoing fatigue and effort.
Mobility: Dylan uses a walker but dreams of walking faster and more confidently.
Emotional health: Dylan battles PTSD, pseudobulbar affect, and emotional ups and downs while practicing emotional awareness and resilience.

The Emotional Weight of Recovery

Dylan’s experience highlights the often invisible side of stroke recovery — the emotional and mental toll.

He bravely shares:

The trauma of waking up locked-in and the fear that still visits him at night.
The emotional lability that leaves him crying easily over small things.
The challenge of staying hopeful when progress feels slow.

Dylan’s advice: “Be aware of your emotions. Take control where you can — through food, movement, or mindset.”

Tools That Helped Dylan’s Recovery

Nasal speech device: Helps redirect airflow, making speech less exhausting.

Baclofen pump: Manages spasticity, offering the potential for smoother movement.

Support community: Connecting with others like Duncan and Clodagh through the podcast made Dylan feel less alone.

Small Steps, Big Hopes

Dylan’s goals are simple but powerful:

Walk faster and more confidently.
Strengthen his speech and reduce reliance on devices.
Stay emotionally resilient through ongoing challenges.

What Can We Learn from Dylan’s Recovery from Locked-In Syndrome?

Progress is possible, even after locked-in syndrome.

Community and connection matter.

Every small step counts.

Dylan’s journey reminds us that stroke recovery isn’t just physical — it’s emotional, mental, and deeply personal.

Frequently Asked Questions

Can people recover from locked-in syndrome?

Yes. While full recovery is rare, many people — like Dylan — achieve significant improvements in speech, movement, and independence.

What helps with recovery from locked-in syndrome?

A combination of therapy, assistive technology, emotional support, and medical interventions like a baclofen pump can make a big difference.

Final Thoughts

Dylan’s story shows that recovery from locked-in syndrome is about more than regaining movement. It’s about reclaiming hope, purpose, and identity.

If you or someone you love is navigating life after a stroke, know that you are not alone. Community, determination, and small steps forward can create meaningful change.

Recovery from Locked-In Syndrome: Dylan’s Real-Life Journey Back from the Brink

Dylan’s recovery from locked-in syndrome shows the emotional, physical, and mental battles stroke survivors face every day.

Dylan Alford’s Instagram

Listen to my interview with Duncan Campling (Episode #133) — another survivor of locked-in syndrome.

Check out Clodagh Dunlop’s story (Episode #38) for further inspiration.

Explore my book The Unexpected Way That a Stroke Became the Best Thing That Happened

Highlights;

00:00 Dylan Alford’s Introduction and Background
03:56 Radiation’s Long Shadow: Dylan’s Journey from Brain Tumor to Stroke
09:23 Dylan’s Medical History and Stroke Details
16:08 From Coordinator to Survivor
20:52 Emotional and Mental Challenges
31:35 Daily Life and Rehabilitation
43:30 Baclofen Pump: Dylan’s Hope for Regaining Movement
47:01 Not Alone: How the Podcast Helped Dylan Through Recovery

Transcript:

Dylan Alford’s Introduction and Background

Recovery from Locked-In Syndrome
Bill Gasiamis 0:00
Before we dive into today’s episode, a sincere thank you to everyone who’s taken a moment to comment, leave a review, support the show on Patreon, click the YouTube super thanks button, buy a copy of my book, or even just not skip the ads. Your support means more than you know you’re helping this podcast reach someone who, like Dylan once did feel trapped physically, emotionally or both, you’re helping them feel seen, and you’re keeping this work alive. Today’s episode is raw, real and quietly powerful.

Bill Gasiamis 0:37
Dylan Alford faced something few can imagine: locked-in syndrome after a brainstem stroke. For two weeks, he could see, hear and think, but he could not move or speak. Since then, he’s been working every day to reclaim what was lost, speech, movement, and independence. His progress is hard won. His emotional strength inspiring, and his journey a reminder that even the smallest steps forward matter. If you’ve ever felt like recovery was too heavy, or that no one sees the fight behind your progress, this conversation is for you. Let’s get started. Dylan Alford, welcome to the podcast.

Dylan Alford 1:20
Thank you. It’s nice to meet you.

Bill Gasiamis 1:27
It’s nice to meet you too. Tell me a little bit about that device that you just put on your nose. What is that and how does it help you?

Dylan Alford 1:35
Breathing is just a nose blow up
, it helps by breathing so I can talk easier.

Bill Gasiamis 1:55
You had a brainstem Stroke?

Dylan Alford 1:58
Yeah.

Bill Gasiamis 1:59
What was it caused by?

Dylan Alford 2:23
When I was younger I had a radiation in my blood vessel. So I guess a blood clot is it.

Bill Gasiamis 2:27
So it was a blood vessel?

Dylan Alford 2:31
Yeah it was small.

Bill Gasiamis 2:34
A really small blood vessel.

Dylan Alford 2:36
And I had a blood clot.

Bill Gasiamis 2:42
You had a blood clot that went in there and got stuck in there.

Dylan Alford 2:45
Yeah.

Bill Gasiamis 2:46
Okay, what caused the blood clot? Do we know?

Dylan Alford 2:49
I don’t know.

Bill Gasiamis 2:53
Okay, how old were you?

Dylan Alford 2:57
This was in 2023. But this is my 3rd stroke.

Bill Gasiamis 3:11
So the last incident in the brain stem was in 2023 but this is your third stroke.

Dylan Alford 3:16
Yeah.

Bill Gasiamis 3:18
Okay.

Dylan Alford 3:21
I’ve had my first in 2019.

Bill Gasiamis 3:28
In 2019 you had your first one, and was it the same kind of stroke, a similar type of thing in the same place?

Dylan Alford 3:36
No, it was an ischemic.

Bill Gasiamis 3:44
Schemic stroke?

Dylan Alford 3:45
Yeah.

Bill Gasiamis 3:46
In a different location?

Dylan Alford 3:48
Yeah on my left.

Bill Gasiamis 3:53
On your left side.

Dylan Alford 3:56
Yeah.

From Brain Tumor to Recovery from Locked-In Syndrome

Bill Gasiamis 3:56
Why are you having multiple strokes? What’s causing it?

Dylan Alford 4:02
Well my neuro surgeon says it was, when I add my radiation.

Bill Gasiamis 4:18
Okay when it was what? What was it? What was the last part you said?

Dylan Alford 4:24
It was from the radiation.

Bill Gasiamis 4:28
From radiation.

Dylan Alford 4:29
Yeah.

Bill Gasiamis 4:31
Okay, so radiation from what?

Dylan Alford 4:34
Well when I was younger, I had a brain tumor. Yeah, so I’ve had so much fun.

Bill Gasiamis 4:55
You’ve had heaps of fun, man.

Dylan Alford 4:57
“Oh, yeah.”

Bill Gasiamis 4:58
Okay, shit. It so you had a brain tumor when you were younger. In order to treat the brain tumor, they use radiation, yeah, and the radiation, one of the side effects is it causes damage to the blood vessel, and as a result of that, it makes it smaller.

Dylan Alford 5:21
Yeah, and that’s how I get the blood clot.

Bill Gasiamis 5:24
That’s how you get blood clots, because of the passage for the blood to go through is smaller. It changes the blood flow. The blood flow causes clots and it gets stuck in the blood vessel.

Dylan Alford 5:31
Yeah, exactly.

Bill Gasiamis 5:47
Wow, man, how old were you when you had the brain tumor treated?

Dylan Alford 5:53
Since 6 and 12.

Bill Gasiamis 5:56
Since you’re 12?

Dylan Alford 5:58
Well, 6 up to 12.

Bill Gasiamis 6:06
So you had the brain tumor diagnosed earlier. It has been treated up until the age of 12.

Dylan Alford 6:13
Yeah.

Bill Gasiamis 6:13
Okay.

Dylan Alford 6:14
Now I just hit it more, and it gets serious every year.

Bill Gasiamis 6:23
Okay, and the brainstem stroke was the most serious stroke that you’ve had of all.

Dylan Alford 6:32
Yeah, my first stroke I’ve been having in about two months, but not this one. It’s been about a year and a half.

Bill Gasiamis 6:58
Before this brainstem stroke, did you have deficits that were related to the brain tumor?

Dylan Alford 7:09
Memory loss.

Bill Gasiamis 7:11
Memory loss, but you were physical, you were active.

Dylan Alford 7:15
Yeah.

Bill Gasiamis 7:17
And since the brain stem stroke, that’s the one that has caused a spasticity?

Dylan Alford 7:24
Yeah.

Bill Gasiamis 7:25
Altered your speech as well.

Dylan Alford 7:27
Yup.

Bill Gasiamis 7:28
And then also made it difficult for you to be mobile so you’re in a Wheelchair.

Dylan Alford 7:35
Yes.

Bill Gasiamis 7:36
Okay, it’s been a crazy journey.

Dylan Alford 7:42
Yeah. You know who has been helping me on the talking.

Bill Gasiamis 7:54
Duncan Campling.

Dylan Alford 7:55
He has been everything than I was, and so has Clodagh.

Bill Gasiamis 8:02
Clodagh Dunlop.

Dylan Alford 8:10
Yeah, both of them.

Bill Gasiamis 8:11
That is so good to hear that you’ve connected with Duncan Campling and Clodagh Dunlop, who Clodagh I interviewed so many years ago, very, very early on in the podcast. And let me, I’m going to go and get the details of when I interviewed them both. So that we can make sure the links are there in the show notes. Clodagh was so many years ago. She was episode 38 I mean, there’s 350 episodes.

Dylan Alford 8:52
I was in the hospital that was the first episode, that was the first episode, I’ve watched.

Bill Gasiamis 9:05
Wow, man, and then, and then Duncan was episode 133.

Dylan Alford 9:11
And what am I?

Bill Gasiamis 9:17
And you are going to be something above 350.

Dylan Alford 9:21
“Oh, man.”

Dylan’s Medical History and Stroke Details

Bill Gasiamis 9:23
Yeah, okay, that is really cool. Man, I’m so glad to hear that you’ve been able to find other people that have been through what you’ve been through. Is that a good thing?

Dylan Alford 9:35
Yeah, they have helped me a lot.

Bill Gasiamis 9:42
Have you had the opportunity to zoom with them, or are you just talking with them via email?

Dylan Alford 9:49
Can talk on Messenger but we sometimes talk.

Bill Gasiamis 10:04
On zoom.

Dylan Alford 10:06
Yeah, well I barely talk to you on Instagram.

Bill Gasiamis 10:15
Instagram Messenger.

Dylan Alford 10:18
Yeah.

Bill Gasiamis 10:19
Yeah, okay, wow, man, let’s pause here for a moment. By now, you’ve heard Dylan share what it’s like to wake up locked in, to fight for every word, every step, and to carry that emotional weight day after day. If you’re listening and thinking, This feels familiar, please know you’re not alone. The struggle to speak and move to be understood. It’s real and it’s exhausting. If this part of Dylan’s story resonates with you, drop a comment on YouTube. What’s been the hardest part of your recovery that people don’t see?

Bill Gasiamis 10:54
A big thanks to everyone who helps this show continue. Your super thanks on YouTube, your support of the book and my amazing Patreon supporters. All right, let’s return to Dylan as he talks about the emotional challenges, the tools that help and what keeps him pushing forward. So is it? Who do you live with?

Dylan Alford 11:18
My Wife.

Bill Gasiamis 11:20
Your wife and where are you living? Which country?

Dylan Alford 11:25
I live in, Texas, USA.

Bill Gasiamis 11:32
Okay, so the time zone is pretty good between you and Duncan. You guys can usually catch up at reasonable times.

Dylan Alford 11:42
Yeah.

Bill Gasiamis 11:46
He’s funny. Him and I communicate every so often as well. Through Instagram, he sends me messages, and I send him messages back. And sometimes he sends me terrible emails, and sometimes I sent him terrible emails. Yeah, brilliant. So he’s been on the journey for quite a few years now, and he’s He’s always making improvements, and he’s always looking for a way to recover and overcome his Duncan’s lock locked in syndrome from the brain stem. Stroke was in 2018 did you have locked in syndrome as well?

Dylan Alford 12:38
Two weeks.

Bill Gasiamis 12:40
Two weeks, when you woke up in the hospital, when you were awake, but you’re you couldn’t move anything. What is that like?

Dylan Alford 12:54
I don’t know, I was like playing, I’m telling me “I don’t wanna be here.” and I was like, there has to be a night there.

Bill Gasiamis 13:20
Wow, and you could hear everybody and see everybody around you?

Dylan Alford 13:26
Yeah.

Bill Gasiamis 13:27
And could you move your eyes?

Dylan Alford 13:30
Yeah, and I was barely moving my head.

Bill Gasiamis 13:41
You know with your voice, is that as a result of the tracheostomy? What was that as a result of?

Dylan Alford 13:48
Well, when I had locked in I couldn’t talk for one month.

Bill Gasiamis 14:03
One month.

Dylan Alford 14:04
Yeah.

Bill Gasiamis 14:05
And now is it very tiring to talk?

Dylan Alford 14:11
A little, but not with this.

Bill Gasiamis 14:18
That makes it easier?

Dylan Alford 14:20
Yeah.

Bill Gasiamis 14:20
Yeah, and then your that just makes it change the airflow somehow, does it?

Dylan Alford 14:29
Yeah.

Bill Gasiamis 14:40
All good, all good?

Dylan Alford 14:42
Yeah.

Bill Gasiamis 14:43
Okay, and that meant, how long did you spend in hospital?

Dylan Alford 14:48
Well I was at different hospitals and rehabs for about 1 year.

Bill Gasiamis 15:01
One year.

Dylan Alford 15:01
Yeah.

Bill Gasiamis 15:09
One year, two different hospitals.

Dylan Alford 15:14
Well more than one, 3 or 4.

Bill Gasiamis 15:23
And when you came home, you came home to the house that you were living in beforehand.

Dylan Alford 15:33
Yeah, we moved.

Bill Gasiamis 15:38
You changed location, was the house that you moved into, was it accessible? Easy to get around with your wheelchair?

Dylan Alford 15:52
Well, when I first had hope, it was hard, but now I had to use to it now.

From Coordinator to Recovery from Locked-In Syndrome

Bill Gasiamis 16:08
Okay, and what about work? What kind of work did you do beforehand?

Dylan Alford 16:14
I worked at a hospital and I was a volunteer coordinator, and I also worked with animals.

Bill Gasiamis 16:37
Volunteer coordinator at the hospital, and then you also worked with animals for?

Dylan Alford 16:47
Volunteer coordinator for that too.

Bill Gasiamis 16:57
Okay, so sounds like volunteer coordinating was your thing?

Dylan Alford 17:01
Yeah.

Bill Gasiamis 17:02
Okay, so your left side was that the side that is not back on board yet, is that the side that’s not back on board? Were you left handed or right handed?

Dylan Alford 17:20
I’m right handed.

Bill Gasiamis 17:23
Okay, I see.

Dylan Alford 17:23
But with my first stroke I was my right hand.

Bill Gasiamis 17:35
For something you’re, what was it?

Dylan Alford 17:39
My first stroke it was my right hand.

Bill Gasiamis 17:48
So your first stroke caused damage to your right hand, and the second stroke caused issues on the left side.

Dylan Alford 17:49
Yep, but now my right hand was a lot better now.

Bill Gasiamis 18:11
But your right hand is a lot better now, you use that to control your, I believe your wheelchairs, is it an electrified wheelchair?

Dylan Alford 18:26
It’s manual.

Bill Gasiamis 18:29
So do you have people coming into the house to care for you, or is your wife doing a lot of that heavy lifting, so to speak?

Dylan Alford 18:40
No, now I’m pretty independent on my own, even though I’m really slow.

Bill Gasiamis 18:57
So you you’re independent on your own, it takes a bit longer to do things.

Dylan Alford 19:03
Yeah.

Bill Gasiamis 19:05
You can get to the bathroom, you can get to eat and make something to drink.

Dylan Alford 19:12
Yeah.

Bill Gasiamis 19:13
Okay.

Dylan Alford 19:16
Now, before when I was lost in and then even a little bit after, I was so weak. I needed help with everything.

Bill Gasiamis 19:39
You were so weak. Well, not moving all that time, there would have been definitely muscle loss and function loss, and then the injury would have caused the same thing, movement loss and function loss and all that stuff. So you had a lot of different things that needed to overcome and rehabilitate. And your rehab, it’s still ongoing, of course. How often do you go to rehab?

Dylan Alford 20:10
Well, right now, it’s on hold until I have a Back Baclofen Pump.

Bill Gasiamis 20:23
A pump of some sort. What was that pump?

Dylan Alford 20:27
It’s for the spacticity.

Bill Gasiamis 20:34
Okay, so the spasticity is getting in the way of your rib.

Dylan Alford 20:41
Yeah, it makes me move so slow.

Bill Gasiamis 20:48
It painful as well?

Recovery from Locked-In Syndrome, Emotional and Mental Challenges

Recovery from Locked-In Syndrome
Dylan Alford 20:52
It was, but not anymore.

Bill Gasiamis 20:56
Okay, so you’re you’re not experiencing pain. Are you on medication to help you? What kind of medication that you on?

Dylan Alford 21:09
I’m on Back Baclofen Pump, and some aspen, and if better, it might end on October.

Bill Gasiamis 21:27
So you’re on a few different medications. Okay, so what is the what does your week look like? How do you occupy your time during the week. What does it start off like on a Monday? And how do you go through that week?

Dylan Alford 21:47
Well, now I try to work out as much as I can and build strength.

Bill Gasiamis 22:02
Build strength and work out as much as you can.

Dylan Alford 22:05
Yeah, and I said to this, I try some tips in my time of different things like that.

Bill Gasiamis 22:20
Yeah, so you so you do as much as you can, so you’ve been in this situation for a little while now. It’s affected you physically, I imagine it’s also affected you emotionally and mentally as well.

Dylan Alford 22:39
Yeah.

Bill Gasiamis 22:40
Okay, that seems like I hit a topic that we need to discuss then, so tell me about the emotional and mental side of it. What is the biggest challenge that you face in that space?

Dylan Alford 22:55
Well, I kind of have PTSD from last year some times when I’m asleep. I think I’m still locked in.

Bill Gasiamis 23:19
Okay. So the PTSD is related to the trauma of waking up locked in, and then you go to sleep, and you have to fight, and you have to catch yourself and remind yourself that you’re not locked in, that you’re asleep.

Dylan Alford 23:42
I am, also many times my emotions are all over the place. I cry about every little thing.I’ll be watching cartoons and I’ll randomly cry, it’s so annoying.

Bill Gasiamis 24:12
I know the feeling I experienced something similar. You know that condition is common, pseudobulbar affect, it’s called.

Dylan Alford 24:24
I know I have a friend who has a stroke that have this too. So, at least I’m not the only one.

Bill Gasiamis 24:44
Yeah, you’re not the only one. So your emotions are all over the place. And does do you also range from crying to angry and frustrated and all that kind of stuff? Yeah?

Dylan Alford 25:01
Well, I was, but now I have a medicine for my anger and my depression, so it helps me stay calm.

Bill Gasiamis 25:23
Antidepressants and that helps the situation a little bit and keeps you a little calmer.

Dylan Alford 25:31
Yeah.

Bill Gasiamis 25:32
Yeah, it’s a lot to deal with, isn’t it? All this stuff, heaps to deal with it.

Dylan Alford 25:37
Well, at least I’m having it now, so I know how to prevent it in the future.

Bill Gasiamis 25:51
So it’s about being aware of it and then taking the right steps and precautions and making sure you prevent it.

Dylan Alford 26:00
Yeah, I’m so much healthier now with what I eat.

Bill Gasiamis 26:11
Okay, so you be healthier than you used to be.

Dylan Alford 26:15
Yeah.

Bill Gasiamis 26:16
okay, how bad was it before? Were you unhealthy?

Dylan Alford 26:19
Well, I wasn’t really bad but I just neglect how would I eat or drink.

Bill Gasiamis 26:35
So now you understand the connection of food to helping your brain heal and recover and for you to get more physical and to improve, basically.

Dylan Alford 26:47
Yeah.

Bill Gasiamis 26:52
That’s fair enough. What else have you discovered that you can do? So one of the challenges that stroke survivors have is they feel like they’re a little bit out of control of situation, which makes sense. When you have a stroke, you realize that there’s some things you can do to take control of your recovery and influence it in a positive way. So you’re paying attention to your food. What other things you’re physically active, you’re doing as much as you possibly can to rehabilitate yourself. What other things have you taken responsibility for and are doing to support your recovery?

Dylan Alford 27:28
Well, now I’m a lot more aware with my emotions like when I’m feeling angry or I can’t turn it better.

Bill Gasiamis 27:53
Okay, so you’re more aware of your emotions, and you’re and you’re able to catch yourself out, and you’re able to adjust the situation, like change the way you’re reacting. What is it?

Dylan Alford 28:08
Well, also the medicine helps.

Bill Gasiamis 28:17
Combined, they both help.

Dylan Alford 28:20
Yeah, because before the medicine, I want to control my emotions, but sometimes I just couldn’t.

Bill Gasiamis 28:40
Yeah, well, you’re pretty normal in that way, everyone is there every so often.

Dylan Alford 28:49
Yeah.

Bill Gasiamis 28:49
And it’s not justifiable, but you have understandable reasons why you can lose your shit every so often. It makes sense, okay, but you still want to be aware of your behavior. Is it you still want to be better? Regardless of whether or not you’re gone through a tough time.

Dylan Alford 29:17
I would like to control it without medicine.

Bill Gasiamis 29:27
To control without medicine?

Dylan Alford 29:29
Yeah.

Bill Gasiamis 29:30
Well, that is, that’s a great thing to achieve, absolutely, if you worked on that and you got to that stage, that’s a great achievement, most people don’t manage to control their emotion, so curiosity, other than meeting me and me meeting you, how come you decided to reach out and jump on the podcast.

Dylan Alford 29:30
Well, actually when I first had my stroke, I watched really a lot of your podcast, and then help me feel like I wasn’t alone.

Bill Gasiamis 30:25
Yeah, okay, so you’re hoping that this interview again will be found by somebody else, and it will help them.

Dylan Alford 30:34
Maybe it’ll help them feel more like they’re not alone.

Bill Gasiamis 30:45
They’re not alone. And there’s other people that have been through this.

Dylan Alford 30:49
Yeah.

Bill Gasiamis 30:51
Duncan, I’ve noticed his improvement over the years as well, since he joined me.

Dylan Alford 30:58
He has improved so much from when he did the interview with you.

Bill Gasiamis 31:14
I haven’t spoken to him face to face for a little while, so as he improved in his talking and his abilities.

Dylan Alford 31:23
Me and him almost talk the same.

Bill Gasiamis 31:30
Okay, almost talk the same.

Dylan Alford 31:34
Yeah.

Daily Life and Rehabilitation

Bill Gasiamis 31:35
Okay, that’s so good. Duncan, I remember we were talking on the podcast interview that I did with Duncan. We were talking with the with his voice, automated voice, with his computer voice, which we prepared that interview so that he had the questions ahead of time, and then he typed the answers. And then, when we met for the podcast, I would ask him the question again, and he would respond with his computer voice.

Dylan Alford 32:09
Well, I was thinking about doing that myself, but then I thought “Wow, this is a good exercise for my speech.”

Bill Gasiamis 32:29
Yeah, absolutely.

Dylan Alford 32:32
Yeah.

Bill Gasiamis 32:36
Absolutely, it’s a good exercise for your speech. Do you normally have this length of conversation?

Dylan Alford 32:41
No. Usually I talk only for a minute or two and then I’m quiet.

Bill Gasiamis 33:01
So, is it fatiguing to talk for this period of time.

Dylan Alford 33:05
Well, if I didn’t have this, it would be.

Bill Gasiamis 33:16
That’s that device is just blowing me away. I just can’t wrap my head around how that device works. I need to look into it and understand it better. But I’m so good, I’m so good that a little device like that makes such a massive difference.

Dylan Alford 33:29
Well, it really helps me with my breath.

Bill Gasiamis 33:38
With your breathing.

Dylan Alford 33:38
Yeah, you remember how hard and tough, for the air to exhale, and just want a sip, you know, that was me too.

Bill Gasiamis 33:59
Okay, so the idea is to stop the air going through the nose.

Dylan Alford 34:04
Yeah, but the speech therapists told me.

Bill Gasiamis 34:11
Okay, your speech therapist told you. How often do you do speech therapy?

Dylan Alford 34:16
Well, right now, it’s on hold. But before I did it Monday to Friday.

Bill Gasiamis 34:32
Five days a week?

Dylan Alford 34:34
Yeah.

Bill Gasiamis 34:35
Okay, and would you what percentage, how much has your voice improved since the beginning of this situation?

Dylan Alford 34:46
I’m not, I’ve been in the beginning I couldn’t talk it or drink. I couldn’t even open my mouth. So to me now I’m so thankful.

Bill Gasiamis 35:14
You’re grateful. So you couldn’t even open your mouth. Was even a problem?

Dylan Alford 35:20
No.

Bill Gasiamis 35:23
So now you’re drinking safely, and you’re eating safely.

Dylan Alford 35:29
Yeah.

Bill Gasiamis 35:34
Are there any restrictions on what you will eat or not?

Dylan Alford 35:37
Nope, no. Well, even when I was on resource, I did my own thing. I just ask whatever I want even though I wasn’t allowed.

Bill Gasiamis 36:03
Okay, so even though you weren’t allowed, you just ate whatever you wanted. Okay, that’s dangerous. Did you have any close calls?

Dylan Alford 36:19
Man, one time I was choked on a grape and then had to call 911.

Bill Gasiamis 36:34
Choked on a grape. A grape is the most deadliest food in the planet, I feel like.

Dylan Alford 36:38
Yeah, well, now I know.

Bill Gasiamis 36:43
Now you know. No more grapes, or are you back on grapes? Can you eat grapes now?

Dylan Alford 36:50
No, I can’t.

Bill Gasiamis 36:54
Okay, so did that happen at home? Or did that happen at a hospital?

Dylan Alford 37:00
Happened at one of my rehab sessions.

Bill Gasiamis 37:04
Rehab Sessions. Wow, man, that’s risky.

Dylan Alford 37:11
Yeah.

Bill Gasiamis 37:14
Now you understand the reason why you weren’t allowed to eat certain foods.

Dylan Alford 37:17
Yeah.

Bill Gasiamis 37:17
Fair enough.

Dylan Alford 37:17
I was such like, whatever and I didn’t hear what happened, but now I understand why.

Bill Gasiamis 37:38
Now you yeah understand why. Fair enough. So, what else are you hoping to achieve? What are your goals for the next, say, 12 months.

Dylan Alford 37:50
Right now, I really want to walk with nobody. I walk with a walker but I am so slow.

Bill Gasiamis 38:14
You walk with a walker at the moment.

Dylan Alford 38:17
Yeah, but I am so slow.

Bill Gasiamis 38:23
Slow, okay.

Dylan Alford 38:25
So, I would like to walk more fast and normal.

Bill Gasiamis 38:35
More fast and more normal.

Dylan Alford 38:38
Well, and also my voice of course.

Bill Gasiamis 38:46
You want to improve your voice as well. So with your walking, for example, do you walk into the house and go into the bathroom or go into the kitchen? Is that how you get around the house? Walking?

Dylan Alford 38:59
Yeah, well, only if someone is here. When I’m alone I’m in my chair.

Bill Gasiamis 39:18
Make sure you don’t fall over without anyone being there to help?

Dylan Alford 39:22
Yeah, because I cannot help up my self.

Bill Gasiamis 39:32
If you fall over, you can’t get up. Yeah, have you had falls on your own?

Dylan Alford 39:39
Maybe.

Bill Gasiamis 39:43
Okay.

Dylan Alford 39:46
Well, nobody’s here know me by name.

Bill Gasiamis 39:53
Yep, do you have people who come into the house to support you during the day, or are you alone most of the day?

Dylan Alford 40:01
Well, I did, but right now we are waiting on a new care giver to start.

Bill Gasiamis 40:09
Okay, so you’re waiting for a new care giver to start, at the moment and the old carer finished up or couldn’t support it? Couldn’t do the role anymore? What happened?

Dylan Alford 40:37
There was once a rehab. So, now I have a new one.

Bill Gasiamis 40:39
Is it a massive inconvenience to not have somebody with you, dropping in to see you?

Dylan Alford 40:46
Yeah, because if someone is here the whole time, then I had practice by walking.

Bill Gasiamis 41:04
Use it as an opportunity to practice your walking?

Dylan Alford 41:06
Yeah, but when I’m alone, I was always in my chair. Not improving.

Bill Gasiamis 41:24
So the more people who are around, the more opportunity you have to be on your feet, focusing on getting better quicker, walking more normal, and then and achieving one of your goals, one of your aims.

Dylan Alford 41:40
Yeah, exactly.

Bill Gasiamis 41:42
Okay, and then other than that, so with your talking, you’re doing therapy. How come that’s on pause?

Dylan Alford 41:53
Well, they are just waiting for me to have my pump, so I can improve more.

Bill Gasiamis 42:11
To have your pump.

Dylan Alford 42:13
Yeah, because right now, my improvements are kinda on a plateau.

Bill Gasiamis 42:29
So, your improvements are kinda on a plateau at the moment.

Dylan Alford 42:31
Yeah. So, they wanna see how I do with my pump.

Bill Gasiamis 42:40
Okay, tell me about the pump again. What’s the pump?

Dylan Alford 42:43
It helps relieve my spasticity.

Bill Gasiamis 42:51
Okay, that pump. So is it a medication?

Dylan Alford 42:55
Yeah, and it goes in your spine.

Bill Gasiamis 43:01
I’m gonna just search that right now. I just want to understand a little bit about it. So it spasticity pump medication.

Dylan Alford 43:15
Yeah, best medication pump.

Baclofen Pump: Dylan’s Hope for Regaining Movement

Bill Gasiamis 43:30
Let’s see if I can find it. I’m trying to understand what. Okay, you mentioned that earlier, but I didn’t pick up on it. So it’s the Back Baclofen Pump.

Dylan Alford 43:44
Yeah.

Bill Gasiamis 43:44
Or the intrathecal baclofen pump. What do they make it so hard to to say.

Dylan Alford 43:53
Yeah, yeah.

Bill Gasiamis 43:54
So a spasticity pump, also known as a baclofen pump, is a medical device implanted under the skin to deliver medication called baclofen directly into the spinal fluid. It’s used to treat severe spasticity. It delivers a small, controlled dose of baclofen directly into that intrathecal space around the spinal cord. This allows medication to bypass the digestive system, reducing side effects, compared to taking baclofen orally.

Bill Gasiamis 44:28
It helps relax the muscles, reduce spasms and improve comfort and mobility. So when you have that from 1 to 10, if one is it doesn’t change anything. And 10, it changes a lot of things. How much does it change your spasticity? How much does it improve it?

Dylan Alford 44:51
Well, right now I’m talking. To other who has it and then tell me it helps you a lot.

Bill Gasiamis 45:08
A lot, heaps, okay.

Dylan Alford 45:11
And they were able to walk, run, drive on his.

Bill Gasiamis 45:21
Wow, okay, so it improves that dramatically where they’re able to improve their walking, driving and everything else.

Dylan Alford 45:30
Yeah, I mean obviously he has, he had been up, but whole fully not.

Bill Gasiamis 45:47
And have you had the baclofen pump before, or is this the first time?

Dylan Alford 45:51
The first time.

Bill Gasiamis 45:54
Okay, so it’s all new to you. You’re going to learn about how it’s going to help you. And then one, once you have that set up, then you’ll be able to determine how much more activity you can do?

Dylan Alford 46:09
I have to rehab again.

Bill Gasiamis 46:17
Then you can go back to rehab. Okay, so it’s a very important step.

Dylan Alford 46:28
Yeah.

Bill Gasiamis 46:28
Okay, I see and your wife. Does she work during the day?

Bill Gasiamis 46:34
Yeah.

Bill Gasiamis 46:38
I was gonna say, how many hours a day is she away from the house?

Dylan Alford 46:47
She makes her own schedule, so a lot of time she was from home.

Not Alone: How the Podcast Helped Dylan Through Recovery

Bill Gasiamis 47:01
She makes her own schedule, so she can drop in and check in “Okay, goodbye.” excellent. So, what else should we discuss? What else did you have something that you wanted to share or talk about?

Dylan Alford 47:25
Well, I would just wanna say, I want many of your episodes. When I was in the hospital, it helped me a lot.

Bill Gasiamis 47:48
I’m so glad that it helped you, man, I am so glad that my episodes made it possible for you to find Clodagh and Duncan make you feel like you’re not alone, that somebody understands you and encourages you. Your hope, encourages you to keep going after recovery like they did.

Dylan Alford 48:07
Yeah.

Bill Gasiamis 48:10
Yeah, fantastic, man.

Dylan Alford 48:10
They help me a lot.

Bill Gasiamis 48:17
I love hearing that. That’s the whole reason why I started the podcast was to find people to help each other so that we can connect, so that we know we’re not alone. And in 2012, of when I went through my three brain bleeds, there was nothing around that I could find or connect with or do that was making me feel the way that I needed to feel, like I wasn’t alone, and there was other people going through what I was going through.

Bill Gasiamis 48:47
And I started the podcast, and it changed everything for me, and then I didn’t realize that it was changing a lot of things for other people as well, which was just a bonus.

Dylan Alford 48:58
I remember when I had that, I’m lost in, but I still couldn’t talk, I was just lay in bed watching the different episodes.

Bill Gasiamis 49:22
I’m so glad, man.

Dylan Alford 49:26
Yeah.

Bill Gasiamis 49:28
Well, I really appreciate you reaching out, connecting, following me, listening to my episodes. I love that you are still passionate about your recovery and finding solutions to help you get better, and thank you for being my guest. Man, I really appreciate it.

Dylan Alford 49:48
Thank you as well, for having me.

Bill Gasiamis 49:52
Well, that’s it for another episode of the Recovery After Stroke podcast. Dylan’s story doesn’t have any ending yet. It’s a journey of small, gritty winds, clearer word, a steadier step, a deeper breath. I’d love to hear what stayed with you from this episode, what part of Dylan’s journey spoke to you and your experience.

Bill Gasiamis 50:15
Let’s keep this space one way stroke survivors feel seen, heard and supported. If you’re ready to go deeper, The Unexpected Way That A Stroke Became The Best Thing That Happened. My book is for anyone looking to find meaning and momentum after stroke, you’ll find stories, tools and circuit breakers to help you shift. Check it out at recoveryafterstroke.com/book, if Dylan’s story moved you. Please share this episode. Someone else may need it today, and remember, slow progress is still progress. See you next time.

Intro 50:47
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis.

Intro 51:17
The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional.

Intro 51:42
Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content, if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department, medical information changes constantly.

Intro 52:09
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The post Some Days I Break Down: Dylan on Recovery from Locked-In Syndrome appeared first on Recovery After Stroke.

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