Vivistim: One Stroke Survivor’s Experience – And Why Spasticity Matters
When recovery gets complicated, honest stories help us navigate the grey. In this episode, John Cross shares his lived experience with Vivistim (paired VNS) and why a less-talked-about barrier, spasticity, shaped what he could (and couldn’t) do in therapy.
The Day Everything Changed
John’s story starts with something ordinary: a bad bout of COVID and relentless coughing. Soon after, he collapsed while getting ready for bed. He later learned he’d likely had a carotid artery dissection, a tear in the artery that can lead to stroke. The swelling in his brain was so severe he needed a decompressive craniectomy. Over a year later, he underwent cranioplasty to “put his head back together.” In between were weeks of hospitals, rehab transfers, infections, and a heavy protective helmet that strained his neck.
Life After Stroke: Identity Shifts and Small Wins
Before stroke, John worked long days as a mechanical designer and application engineer problem-solving was his world. After stroke, everything changed: left-sided weakness, hypersensitivity, time distortion, and the emotional rollercoaster many survivors know well. Work disappeared after a corporate acquisition; insurance hurdles stacked up. Still, he kept searching for options: hyperbaric oxygen, medications, and eventually Vivistim.
What Vivistim Is (and Isn’t)
This isn’t medical advice or a recommendation; it’s John’s account. Vivistim is a paired vagus nerve stimulation device: a small implant connected to the vagus nerve. The core idea is timing brief stimulation while you perform a task, to help the brain strengthen relevant neural pathways. John’s sessions included therapist activation and a magnet he could use himself. He didn’t always feel the “throat tickle” many describe. One day, he surprised himself by pinching a Post-it between thumb and finger, tiny, yes, but meaningful.
The Spasticity Factor
Here’s the critical insight from John’s story: spasticity can limit functional gains.
He describes his left arm as “locked up” so tight that even in zero-gravity setups, he felt like he was fighting a 15-pound weight. Without the ability to move the limb through useful ranges, pairing stimulation with specific movements was harder. He explored options like Botox (costly with his insurance) and became curious about longer-lasting approaches like cryo-neurolysis still hard to access in his region.
This doesn’t mean Vivistim can’t help someone with spasticity; it means spasticity may need its own plan so therapy, any therapy, has room to work.
The Emotional Load No One Warned Us About
John speaks candidly about fear, clinginess, and anger outbursts that felt out of character. He wished someone had prepared him for the emotional and cognitive shifts after discharge. In my experience, that gap is common. Hospital teams do an incredible job stabilizing people, but the “what now?” conversation often happens elsewhere, and often too late.
If that’s you: you’re not broken and you’re not alone. Emotional changes can be part of brain injury, not a moral failure. Support (counselling, peer groups, community) helps.
Advocacy, Patience, and the Power of Community
John’s engineering mindset both helped and hurt. He wanted to “solve” recovery quickly until he realized recovery demands experiments, patience, and feedback. He kept reaching out, kept learning, and kept trying. That’s hero work.
“Small wins count. Pinching a Post-it mattered because it meant my brain could still learn.”
—John Cross
Practical Takeaways (Not Medical Advice)
- If spasticity is a roadblock, make it a priority topic with your clinicians. Strength, range, and fine control often need spasticity addressed first.
- Pair therapy with purpose. Whether you use a device or not, rehearsing goal-based movements with repetition is powerful.
- Track tiny wins. A weekly note of “what moved, what felt different” builds momentum.
- Get emotional support. Recovery is physical, mental, and emotional. Consider a psychologist or peer group.
- Be your own advocate. Ask questions, seek options, and document outcomes.
If you want a lived-experience roadmap for the long haul, my book might help:
The Unexpected Way That a Stroke Became the Best Thing That Happened
And if this show supports you, consider joining the community:
Patreon.com/recoveryafterstroke
“Spasticity doesn’t mean progress is impossible. It means the plan needs adjusting.”
Sponsor
A thank you to Banksia Tech, distributors of the Hanson rehab glove by Syrebo, designed to help stroke survivors work on hand function at home, whether you’re early in recovery or years in. You’ll hear more during the episode.
Final Thought
John’s story isn’t about a miracle device. It’s about nuance: understanding that tools, timing, spasticity, emotions, and support all intertwine. Recovery isn’t linear, but small, honest wins stack up.
Disclaimer:
This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan.
John Cross on Spasticity, Vivistim, and Finding Small Wins After Stroke
John shares his Vivistim experience and how spasticity shaped rehab, an honest look at small wins, setbacks, and hope in stroke recovery.
Highlights:
00:00 John Cross’s Background and Initial Stroke Experience
05:03 Jon Cross: The Night Everything Changed
16:48 Hospital Stay and Initial Diagnosis
18:27 Rehabilitation and Vagus Nerve Stimulation (VNS)
21:21 Jon Cross: Rewiring Recovery with Vivistim
35:29 Small Wins and Hope with the Vivistim Journey
49:23 Emotional and Psychological Impact
52:08 Adapting to Life Post-Stroke
54:42 Support Systems and Future Goals
Transcript:
John Cross’s Background and Initial Stroke Experience
Bill Gasiamis 0:00
Before we jump into today’s conversation, I want to take a moment to thank everyone who contributes to making this show possible. My Patreon supporters, YouTube commenters, Apple podcast reviewers, and everyone who’s brought my book The Unexpected Way That A Stroke Became The Best Thing That Happened, after doing this for more than 10 years on my own.
Bill Gasiamis 0:20
Your support now helps me create this content for other survivors who need hope, inspiration and real world insight into life after stroke and a special thank you to Banksia tech, proud distributors of the Hanson rehab glove by cerebo, designed to help stroke survivors improve hand function at home, whether you’re early in recovery or years down the track, and I’ll tell you more about them later in the episode. Today’s guest is John Cross, and he’s got a fascinating story to share. John experienced a carotid artery dissection that led to a major stroke and required a craniotomy.
Bill Gasiamis 0:58
He’s now living with a vivistam implant, a Vagus Nerve Stimulation device, and he talks candidly about what it’s really like, how it works during rehab, and the challenges that spasticity still brings. This is not medical advice or a product endorsement. It’s one man’s lived experience, and the reminder the recovery is rarely linear. Let’s dive in. John Cross. Welcome to the podcast. Thank you. Give me a bit of a rundown about what John Cross used to get up to before the stroke.
Jon Cross 1:34
I went to work every day, 1214, hours a day. Difficult work. Worked as much as I could. I enjoyed my job, and unfortunately, since the stroke work, decided they didn’t need me anymore, so I don’t do it anymore.
Bill Gasiamis 1:53
What kind of work did you do, John?
Jon Cross 1:57
Well, the bulk of it was a mechanical designer with AutoCAD. But they my title was, they called us in a sales Application Engineer, which I’ve always likened to Inside Sales Support. Really, they just like to put a big, fancy title on it.
Bill Gasiamis 2:16
Sales Support, yep.
Jon Cross 2:21
So I’ve for 30 years, I’ve designed clean rooms, like for pharmaceutical and high tech stuff.
Bill Gasiamis 2:32
Rooms where there’s no or small chance of cross contamination or something like that.
Jon Cross 2:39
Exactly.
Bill Gasiamis 2:42
And what about family life? What was that like? What was your situation?
Jon Cross 2:47
My family’s awesome. I wouldn’t be here without them. So I’ve got boy and a girl, both adults and my wonderful wife.
Bill Gasiamis 2:59
So 14 – 15, hours. Was that just part of what was required, what was necessary? Or is that because you loved job so much.
Jon Cross 3:09
A combination, and just couldn’t get it all done because I covered multiple bases where the bulk of my job was to put a, I don’t know if everybody understands what a submittal package is, but in a quick definition, it’s gather all the information from the customer and repackage it so that they understand that you know what they want, and this is what they were going to give.
Bill Gasiamis 3:39
And what did you do? Go ahead, and then you would.
Jon Cross 3:42
Sorry, no. Then I also designed the product too, so I covered multiple bases, but downtime, I kept the family cars going and just tinkered around the garage.
Bill Gasiamis 3:59
And what were you focused on, anything in particular back then? Was there anything that you were sort of straight, aiming towards or striving for.
Jon Cross 4:10
Just basic life stuff, you know, provide for the family? And unfortunately, that was right at the height of covid, and that’s what nailed me.
Bill Gasiamis 4:21
I see what was the sense that you had about your health? Did you feel like you were in a in a good way physically?
Jon Cross 4:29
Well, I knew I could be better, but it wasn’t terrible, like I could run up a flight of stairs and not be winded, but it couldn’t ride my bike up a hill and do it very well. So any other is room for improvement.
Bill Gasiamis 4:53
And how old were you about the time?
Jon Cross 4:55
My stroke was? I was 57.
The Night Everything Changed
Bill Gasiamis 5:03
And now, do you have a sense of what happened on the day? Do you have a recollection of how your day started and what evolved?
Jon Cross 5:14
My day was normal. I mean, I had covid, cold, really bad, and probably shouldn’t have gone to work, but I did, and just kept the old mask on and worked through my day. Got home, and normal for me was to come home exhausted and just crash on the couch until bedtime came. Thankfully, I woke up enough to get myself up to bed, and I went in to get ready for bed, and short story is I collapsed in the closet where I would get ready for bed. Thankfully, my wife heard me struggling to get back up, and she knew exactly what happened, and called the ambulance right away.
Bill Gasiamis 6:02
So what did you notice? What did you feel? How? How did things change for you? Before you knew there was something going on?
Jon Cross 6:10
Well, I was trying to get my pants off and get ready for bed, and I have a weird belt, and I couldn’t get the belt under undone enough because it was a ratchet type of belt, and I didn’t know it at time, but now it makes sense, my left hand quit working, and I couldn’t release the bill to get my pants off, so I leaned up against the wall, and before I knew it, I was on the floor.
Bill Gasiamis 6:40
Was there any other than having covid? Was there any other sort of suggestion, now, looking back, that there was something going wrong, that perhaps was a red flag.
Jon Cross 6:54
Well, now I know I explained to the doctor, you know, I had an earache and see my carotid already dissected. And he said the earache that I thought I was having was actually my carotid artery starting to go.
Bill Gasiamis 7:15
I’ve had some people who join me on the podcast with carotid artery dissections. Often there’s a trauma that’s related to it. They’ve been hit, or they were in a collision in a vehicle, or something happened that made their carotid artery dissect. Did you have anything like that? Any blunt force trauma or anything?
Jon Cross 7:35
No, the doctor said it was just my coughing so hard all the time.
Bill Gasiamis 7:40
Wow, from the covid, yep, wow. And does that, was it that hard the coughing? Was it that hard that you felt to it was worse than ever, or was it really, really difficult to cough? How was it that bad?
Jon Cross 8:00
Yeah, I just had a lot of stuff in my throat trying to cough it up, and the constant tickle, trying to get rid of the tickle, and it was, was there’s nothing now looking back this, I should have noticed that.
Bill Gasiamis 8:19
But no, you wouldn’t. How would you have possibly known that?
Jon Cross 8:24
Coughing? Yeah, not now. I would in the future.
Bill Gasiamis 8:29
Yeah, that’s another very strange way to discover that somebody has had a stroke. I’ve had all sorts of different ways. People have been bitten by a dog that caused a stroke. People have hit themselves in the neck and caused a stroke. People have sneezed and caused a stroke. All of those types of things are just so strange and bizarre that it could those seemingly benign events could lead to a stroke.
Jon Cross 8:59
Yeah, and I sneeze very hard. My family’s always proved me about it. And I told the doctor when I was in rehab, I’m afraid to sneeze. And she said, Don’t be afraid to sneeze. Like, well, Doc, you didn’t have a stroke.
Bill Gasiamis 9:17
Yeah, from coughing as well. And did they connect the dots quite quickly? Did they work it out early, or was that something that you kind of connected the dots on a little later?
Jon Cross 9:31
No, I think with their help, it all kind of came together once, you know, I was in the process of not dying, if you will. They had, I had a, I can’t remember his craniotomy or craniectomy, where they take your skull flap off, yep. Can’t keep them straight. Which one’s which, yep. So as recovering from that procedure, when the doctor was talking to me, I told him that I had covid weeks before, and he said “Oh, covid, stroke.” And then I described. Pain. Okay, that’s what happened. And described it because they had the typical questions, did you see a chiropractor? Nope.
Bill Gasiamis 10:12
Tell me about the craniotomy. Why did you have a craniotomy?
Jon Cross 10:18
Just to release the pressure? I actually told the my told my wife I was gonna die because my had so much pressure in my head.
Bill Gasiamis 10:32
And the pressure is that as a result of the dissection, and what happened to to your head after the dissection?
Jon Cross 10:41
Yeah, well, it was from the dissection, yes. And really, they didn’t do anything besides just stare at me and see if I died or not. They didn’t fix my artery. I guess I never talked to him, but they didn’t. I figured they put a stint in, and they didn’t, so they just let my body heal. And the taking the skull flap out gave my brain enough place to swell.
Bill Gasiamis 11:11
So how big? How big was the flap? Was it a large portion of the skull that was removed? Sometimes people have pretty much half their skull removed. What what forms like for you. We’ll be back with more of John’s story in just a moment, including what he’s been learning about patience, spasticity and tiny wins that make a difference. But first, a quick thank you to Banksia tech for supporting this episode. They’re the Australian distributors of the Hanson rehab glove by Cerebro, which helps stroke survivors regain hand function from home.
Bill Gasiamis 11:48
It’s a beautifully simple idea, assistive movement that helps the brain relearn. You can learn more and order directly through Banksia tech.com.au, the links will be in the description, and they also ship internationally. And if this show has helped you in your recovery, please consider supporting my mission over on patreon.com/recoveryafterstroke. Your support helps me keep producing these conversations and sharing hope with people who need it most.
Jon Cross 12:19
I’d say it was about the size of my hand. Okay, I have a picture of the prosthetic they put back in place because the actual piece of bone got infected. It couldn’t put it back in.
Bill Gasiamis 12:32
Okay, well, that’d be something that we I’d love to see personally, if you don’t mind sharing it. And then we could put it on the show notes, and people can have a look at it.
Jon Cross 12:42
I’ll shoot you an email of it. I have a funny story for that. Tell me so if you don’t mind taking the time for it, not at all. Part of what I did was design surgical suites. So the company that we were working for at the time, actually made the product that’s in my head. And my boss was joking with me, said, we’re going to imprint the company logo in your prosthetic. It’s like, yeah, I don’t care. Just give it for me.
Bill Gasiamis 13:16
That’s hilarious. You don’t do you have the company logo imprinted on it now.
Jon Cross 13:20
it’s not no and I’m grateful. Since they got rid of me, I wouldn’t want to be advertising that.
Bill Gasiamis 13:26
Fair enough. I couldn’t agree more. They got rid of you. They had to get rid of you because you were taking too long to get back to work. You weren’t being productive. Was it? What was the situation there? Do you feel? Well?
Jon Cross 13:45
Company I worked for had been sold to a big conglomeration just a couple months prior to my stroke, and I got back to work. I’m not exactly sure the timing, because time is not something I’ve been able to master very well now, and I was working from home quite well. There wasn’t a whole bunch of work to do. And anyway, my recovery slowed down. I hit the old plateau, if you will, and we had found clinical trials down in Houston.
Jon Cross 14:27
So I talked to my boss and said we wanted to move to Texas so I could get into the clinical trials. And I work remote. And he gave the Okay. And literally, two weeks before moving day, HR calls and said, we’ve been talking and we’re kind of slow, so we’re going to move you over to contract work, give you work as we need it. And few months went by and could never get any work out of them, so they just you. Kind of phased me out.
Bill Gasiamis 15:01
I say I understand. So on the on the day of the stroke, your wife realized there was something wrong, she called the hospital, or she called the ambulance, I imagine the paramedics.
Jon Cross 15:15
Yep, yeah.
Bill Gasiamis 15:17
Were you aware of that whole process? Very clearly, you do. You do remember it? Tell me. Take me through that day. What was it like when you realized that something serious was happening? How did you feel about it? And what were you thinking?
Jon Cross 15:30
Well, I didn’t put it together. I just knew I was on the floor and I couldn’t get up, and I’m laughing in my head. I was laughing at myself because at the time, my left hand was working enough that I could reach out, and there’s a laundry basket beside me, and I was trying to hook the laundry laundry basket with my fingers to help lift myself up. And I thought, that’s not going to work. Laundry baskets not heavy enough to pull on. So my wife heard me and came in, and I was just trying to wave her off so no, just call my son and help me get up.
Jon Cross 16:04
I’ll be fine, because I didn’t realize the headache at the time. But I know, you know I felt the ride down the stairs. You know they have the gurneys that walk down the stairs now, and I knew exactly what was going on. I had a pocket knife in my pocket at the time, and I knew I was going to hospital, so I was trying to get out of my pocket to give my wife and she could see what I was doing, and she said I already got it, hon. But later it dawned on me, I couldn’t move my right arm because the gurney had me strapped in.
Hospital Stay and Initial Diagnosis
Bill Gasiamis 16:48
To take you down the stairs to make sure you don’t fall out. Yep, yeah, and then you ended up in hospital. How long were you in hospital for?
Jon Cross 16:58
You know what I’m I actually asked my wife the other day how long, and the best we can figures, has maybe roughly five weeks before they sent me over to what they call a transitional care facility that was supposed to give me rehab, but they sent me over with a bladder infection, and my blood pressure went crazy every time I tried to rehab, so that didn’t go very smooth.
Bill Gasiamis 17:25
So as a result of that, you didn’t have rehab, or was it a different something else happening while you’re a rehab, a different medical issue.
Jon Cross 17:38
Eventually, I wound up back at the hospital at what they call inpatient rehab. And that was okay, and that lasted for, you know, about a month and a half, I suppose. And then I got back home, and we continued to wait for the swelling to go down in my head before they put my head back together.
Bill Gasiamis 18:06
And then they put your head back together, a little while later.
Jon Cross 18:10
So my stroke was in June. I got my head put back together. June of 22 this is where I have trouble with time, because I got my head put back together in September of 23rd.
Rehabilitation and Vagus Nerve Stimulation (VNS)
Bill Gasiamis 18:27
Okay, so quite a while later, over a year.
Jon Cross 18:31
Yeah, which blows me away, because it felt like it was just a matter of a couple of months.
Bill Gasiamis 18:39
And in that time, are you wearing one of those protective helmets or hats or something over your head to ensure your brand is kept safe?
Jon Cross 18:47
Did the big, heavy monstrosity make it sweat all the time and hurt my neck because it was so heavy.
Bill Gasiamis 18:57
And in that time, are you? Are you feeling okay with everything, or are you experiencing deficits and you have challenges to deal with? So it sounds like your left hand doesn’t work. What about your left leg?
Jon Cross 19:12
Well, I eventually managed to walk after I got home, and my wife helped me, and I got walking figured out, but I still have to wear the AFO never really got the arm to work, but deficit wise, it was the left arm, left leg and hypersensitivity were boy when they Were trying to wake me up from the initial craniotomy, they did the finger pinch in the cuticle, and it literally felt like I was being electrocuted.
Bill Gasiamis 19:54
Yeah, hypersensitivity on their left side.
Jon Cross 19:58
Yeah. Did not like that, it whatsoever.
Bill Gasiamis 20:01
Yeah, and then the rest of your skin as well. Is it just your fingers, or is it the rest of your skin as well? The heart, the entire left side,
Jon Cross 20:12
It’s a lot of the skin, not everything, but I still have some sensation issues, but I can tell hot water that’s easy.
Bill Gasiamis 20:29
And as far as the arm work movement goes, does the arm move up and down, or is the arm also not moving too much?
Jon Cross 20:39
I’m basically, I don’t move from the elbow down. I got a little bit of shoulder movement, and I can move my fingers just a slight bit, not as much as my right side at all, but I got some movement into the thumb now.
Bill Gasiamis 20:54
So you’re still seeing a slight improvement over the last period of time.
Jon Cross 21:00
Yeah, actually, this last year, I got the Vivistim implant, so that might be helping some, but gotta get back. I’m gonna get into physical therapy again here in another couple of weeks and get some use of the Vivistim unit.
Jon Cross: Rewiring Recovery with Vivistim
Bill Gasiamis 21:21
Tell me about the Vivistim unit, because there isn’t a lot of people who have been able to access it, A and B. Provide feedback to other people about what it’s like. There seems to be a very a bit of a black hole of information around it. What, what was it like for you to get the device installed. How do you go about that? How easy or hard was that?
Jon Cross 21:48
Well past the insurance it was a piece of cake that unfortunately, I have a shunt because of the excess pressure in my head. So I’ve got a drain line on the left side, where they normally put the biggest immunity on the left side. So I found a doctor that could put it on the right side, and then he tunneled across my neck to put the coil on the left vagus nerve. But if I could let anybody know, make sure you get your spasticity taken care of, because that was a big limiter on me and getting my arm working.
Bill Gasiamis 22:27
What’s the Vivistim meant to do? How is it supposed to help?
Jon Cross 22:32
Well, I like to say it’s kind of a slap in your in the back of the head, saying, Get your butt back to work so it stimulates the brain to generate new neural connections, and you’re supposed to stimulate it while you’re doing a task. So the brain makes that connection. It’s like, we do this. We make that connection.
Bill Gasiamis 22:58
And you stimulate it. How? How does the stim the Vivistem do that? Do you know?
Jon Cross 23:04
Well, the therapists have a way to do it with their computer and a remote, and then I have a magnet that I can turn it on with. Okay?
Bill Gasiamis 23:13
And what does it feel like when you turn it on? How does it feel?
Jon Cross 23:17
Well, they say I should feel a tickle in your back, your throat like you need to cough, but I’ve never felt anything. Nobody said, why? I don’t just that’s just the way some people are.
Bill Gasiamis 23:33
So you activate it, and then while you’ve activated it, you’re supposed to be doing some kind of a physical activity, an exercise, a movement, a rehabilitation type of correct and then, does it? Does it generate electrical pulses, stimulation? What kind of feedback does it give the vagus nerve?
Jon Cross 24:00
Well, if I remember right, it’s just, you know, they’re talking milliamps of current. It’s like just a very, very short duration of time, like every five seconds, and only lasts for about 30 minutes.
Bill Gasiamis 24:21
And then you have to switch it off. Or does it have a set amount of time that it works for?
Jon Cross 24:29
It has a set amount of time?
Bill Gasiamis 24:33
Do you know why that is?
Jon Cross 24:36
That’s just what they determined that is best for rehab. So you’re supposed to have, and I had six weeks of therapy right afterwards, so you’re supposed to have, you know that how they say you have X number of movements to make to ingrain stuff back into your brain.
Jon Cross 24:59
So you’re. Trying to amplify that time. Repetitions is word I was looking for.
Bill Gasiamis 25:07
Okay, and how big is the device?
Jon Cross 25:12
It’s a large matchbox, basically.
Bill Gasiamis 25:18
And does it sit under your under your skin, somewhere?
Jon Cross 25:21
Yeah. How long you can see I got a small, low scar right there, yep, but I can definitely feel it. It’s right there.
Bill Gasiamis 25:34
And then, does it have a battery? How long does it last? Do you know.
Jon Cross 25:38
They say it lasts up to seven years.
Bill Gasiamis 25:42
Okay, so you got through all of the drama with the insurance company? Was that quite a drama?
Jon Cross 25:52
I’d have to look back at records, but they said when I went into the doctor, okay, the lady that does all the paper potion said it can be like, three to six months to get the approval. And Ryan came back in, gosh, I forget it was like, oh boy. I maybe 30 weeks, I think so, substantially shorter than what they had experienced with the insurance companies.
Bill Gasiamis 26:31
Okay, and now that it’s in your The idea is that you go and get more rehabilitation, or do you also use it and activate it at home? Is that whole idea that you can switch it on and off whenever you feel like, whenever you’re being more active, or whether you’re doing a home rehab?
Jon Cross 26:55
Well, I had one therapist say, anytime I’m like, even going out to the car or going to the store or whatever, turn it on. But I need to clarify that, because that’s not using, you know, my bad side. I’m not doing anything specific to the arm that’s affected. So I want to clarify that. But the idea is that I do therapy, either with a therapist, or I do at home too, anytime, like showering and stuff, I can turn it on.
Bill Gasiamis 27:34
And the Vivistim basically sits there. It doesn’t pulse or doesn’t do anything. When it’s switched off, you don’t feel other than feeling it under your skin. You don’t hear it. It doesn’t make a noise or anything like that, nothing.
Jon Cross 27:51
Hey, the only time a guy notices when the cat walks across me, hell just because she steps on it feels like a bruise.
Bill Gasiamis 28:03
Okay, how long have you had it installed?
Jon Cross 28:08
I shoot. I thought about this yesterday. I should have nailed it down. But April of 25 okay?
Bill Gasiamis 28:18
April, May, June, July, August. So it’s been in there for about four months. Yep, okay. And have you had a lot of time activating it, switching it on and off? Have you been able to utilize it?
Jon Cross 28:36
Yeah, definitely. And I know it’s been a couple of months ago now, but I was able to not going to seem like a big deal because I have a little bit of movement in my other in my bad hand, like I was able to grasp a piece of like a Post It note in between my thumb and index finger with the bad end. So that was encouraging.
Bill Gasiamis 29:07
The vivistim organization, the people who create the product, supply the product, and then your doctors are there follow ups. Do they communicate with you? Do they see how you’re going? Do they check in with you?
Jon Cross 29:24
I had to have a follow up visit. Boy, I think it was a month after it actually got implanted, just to make sure that things look good and they could take the band aids off and all that.
Bill Gasiamis 29:38
And that was about it.
Jon Cross 29:41
That was about it. I mean, the therapist check and make sure that everything looks good. When they activate it, they can actually do readings and see that the connections are all there.
Bill Gasiamis 29:56
So there is a way to connect into it, get a read. An I imagine, on a computer, or some sort of an app or something.
Jon Cross 30:03
Yep, exactly.
Bill Gasiamis 30:06
So they have some data. I’m sorry, I have some data that they can look at.
Jon Cross 30:13
Yeah, I was hoping that they it recorded and they could look back at the recordings, but it doesn’t do that. So it’s just live data that they see.
Bill Gasiamis 30:25
I see, and then first you have to get the Vivistim. You have to get the insurer to approve it. Then it has to get installed. Then I imagine you have to find a therapist that is that knows about the technology and knows how to get the most of it, I would, I would imagine, is that the case, or is that not happening?
Jon Cross 30:55
Well, I have a business in rep, rep, excuse me, in the area, and she’s working on getting training into the local hospital here. So I have offered to be the guinea pig for the hospital to get trained up on so we’ll see if they take me up on it.
Bill Gasiamis 31:14
Yeah, fair enough. How did you find out about the Vivistim.
Jon Cross 31:20
I found out about this 10 years ago, when we were still, you know, I still in my initial rehab, because ever since I got home, that’s all I’ve done is research how I can get better. So I’ve done hyperbaric I even tried ketamine, and that was not good.
Bill Gasiamis 31:43
Okay, tell me about the ketamine experience. Why did you try that?
Jon Cross 31:49
Well, I understood, you know, the brain produces that BDNF protein to help reduce, rejuvenate things, and that’s what I focus on a lot is brain derived.
Bill Gasiamis 32:03
Yeah, brain derived neurotropic factor?
Jon Cross 32:06
Yep, so I thought, What the heck? Let’s go ahead and try ketamine. And this is a guy who didn’t do anything in high school, right? So thankfully, my wife stayed with me, because, as a I’ll say it was a bad trip, because I don’t know what a good trip would be.
Bill Gasiamis 32:24
Yeah. Okay, so your first experience with substances that you most of the time should be avoiding was after a stroke, correct? Well, the about that’s probably about it. We’re not gonna talk about it any more than that. We’ll just leave it at that. It’s not a good thing. You didn’t, you don’t you don’t suggest people should go down that path, I imagine.
Jon Cross 32:51
Well, it depends on your personality and your ability to handle being wigged out. But there’s a new Algernon is the company they are working on a product called a DMT that is a synthetic version of something your body can produce, which is a natural hallucinogen that can achieve similar results, ketamine, without getting you so messed up. I have an appointment with my new doctor just in another week or so. Want to talk to him about the possibility of being able to use it give that a show up.
Bill Gasiamis 33:37
I see understand. So the idea is to activate more of the brain. Isn’t that the idea with ketamine and psycho psychoactive drugs?
Jon Cross 33:51
Yes, good way to put it.
Bill Gasiamis 33:54
And then hopefully you activate parts of the brain that perhaps may have been dormant or support the ones that are dormant to come online, and then, as a result, potentially gain some function.
Jon Cross 34:09
Yeah, even if it’s as much as little, as getting the Good half to take over.
Bill Gasiamis 34:16
Yeah, understood. So you’re you your What were we talking about before? Before we spoke about ketamine.
Jon Cross 34:28
You were on the river STEM.
Bill Gasiamis 34:30
We were talking about vivistim, people are getting trained up in your local area by the river stim. Rep, to support hospitals. I imagine doctors there to work with the product, to make the most of the product. You had it installed by the team that installed it. Are they? Vivistim, people? Are they doctors? Who are they? Who installs it?
Jon Cross 35:01
Just a neurosurgeon did it, and he’s trained up by vivistim. So once you have it installed, you don’t have to necessarily be at a clinic that knows about vivistim, because you can activate it yourself any physical therapy is good for you. Just get your repetitions in. Just need to do them the right way.
Small Wins and Hope with the Vivistim Journey
Bill Gasiamis 35:29
And is the idea to have it in stored for the entire seven years, permanently after that?
Jon Cross 35:34
Or, you know, I never thought to ask about removal. If that’s an option or not, but as far as I know, it just stays there. It’s kind of like a pacemaker, but it’s a pacemaker for your brain.
Bill Gasiamis 35:50
Understood. Okay, wow. What an interesting experience that is to go through all of that. Hopefully it gets some it gets some stuff happening on your arm and on your left side there, and improves things for you. Have you, have you had some changes that you associate to the Vivistim that you can say, perhaps it’s as a result of the device.
Jon Cross 36:18
Now, not necessarily, but grabbing that post it note, had never been able to do such a thing. But like I said, I have a little bit of movement like this with the bad hand, so I just when she gave it to me, I tried harder to actually grab a hold of it. So might have just been the encouragement. Let’s go ahead and try this now.
Bill Gasiamis 36:41
Yeah.
Jon Cross 36:44
The big thing I want to be able to do is something silly is just scratch my nose.
Bill Gasiamis 36:50
With your other hand.
Jon Cross 36:52
Yeah, because right now I have to pick my hand up if I want to do anything.
Bill Gasiamis 36:57
Yeah. Understood. Well, I hope you get there, mate, I really, really hope you do.
Jon Cross 37:04
I appreciate that, and I’ll give you any positive updates. But making the move back to Oregon has been great because I got connected with a lot of people here. That’s encouraging.
Bill Gasiamis 37:20
You seem very mild minute.
Jon Cross 37:24
Thanks. But going from what I considered marginal rehab initially, to down to Texas for the clinical trials, and then, basically, the day we got moved into the house, I called to tell the university I was there, and then they did the evaluation over the phone. Kind of had the shunt and I got disqualified. So that was a big letdown. Been a lot of ups and downs.
Jon Cross 37:58
That’s one big thing, is dealing with ups and downs, you know, obviously there’s emotional roller coaster anyway, but then throw in these hurdles you didn’t think about, you know, your job letting you go, and losing your insurance and the ability to get back to hospitals and stuff is it’s a big, you know, punch in the gut.
Bill Gasiamis 38:19
Yeah, that’s what I was sort of suggest going to ask you about. You seem very mild mannered, and you don’t seem very easily rattled. However, you’re going through all the emotional turmoil, the physical turmoil, I imagine there’s some mental challenge there as well. You know, trying to get wrap, wrap your head, around all of the stuff that you have to deal with all of a sudden that you’ve never had to deal with before.
Bill Gasiamis 38:47
What’s the hardest part for you of that? Is it something specific that you you hadn’t had to deal with before? And I’m not talking about the physical condition, but is there something specific that came up that was the most challenging for you to grapple with.
Jon Cross 39:05
Well, the biggest thing, I think, was emotionally, you know, I always felt my poor wife has just been through it, you know, because I was basically a little kid again, as far as being clingy and needy. I didn’t want to be left alone.
Bill Gasiamis 39:26
Through fear?
Jon Cross 39:28
Yeah.
Bill Gasiamis 39:31
That something might happen again.
Jon Cross 39:35
Well, I’ve learned to understand that it’s, you know, not real. It’s just my brain, you know, since there’s so much of it missing and it’s just messing with my ability to reason.
Bill Gasiamis 39:51
Okay, so that’s a really great distinction. So it’s, it’s beyond just irrational fear or even rational fear. It’s beyond. I had a stroke. I might have another one. I need somebody around with me all the time. It’s also, you understand that it’s also the injury actually in your brain that perhaps could be running these types of feelings.
Jon Cross 40:17
Yes, definitely. And I wish that they offered, you know, I mean, usually people don’t really like the idea of the doctor offering you to talk to a psychologist, but that would have been great to have somebody specific that could have helped you understand that this is going to happen be ready for it.
Bill Gasiamis 40:39
Yeah, there isn’t much conversation after that initial intervention to make people feel ready to go home, so to speak, or not not feel ready to just send people home. There is no you had a stroke. What now? Conversation? Ever anywhere that I’ve heard of, nobody that I’ve spoken to has ever said that there was a conversation that gave them some understanding of what to expect.
Bill Gasiamis 41:11
And I find that really fascinating and challenging. And at the same time, I think it’s kind of what we do here on the podcast, is we, I think we feel that gap. People seem to tune in to get a handle on how other people are going about their recovery, and what kind of and how they and how they’re forging, you know, their path forward.
Jon Cross 41:38
Yeah, that’s one of my, you know, hopes that I can help people understand better, maybe even if it’s the doctors. Hey, you know, the patients need this kind of support afterwards. But you know, I’m not medically educated, so you’re going to listen to me?
Bill Gasiamis 42:03
Yeah, I’m not sure that there’s much. I’m not sure that there is a lot of conversation between patients and their doctors. The doctors tend to need to move patients on. They tend to get you to a state where they can send you off to make the space available for somebody else, rather than have you come back provide them with feedback, perhaps on your experience, their customer service, the tools that they offered You, the support that they gave you.
Jon Cross 42:42
Sorry, I’m trying to ask my wife to move out because the bag is noisy, but yeah, I think that’s I really want to try to help people in the future learn to cope with the stuff I got connected with a Stroke Awareness Oregon, and lady that’s headed and out of so she, she follows you a lot. Hopefully I can get myself better enough that I can go in and offer some assistance in there.
Bill Gasiamis 43:17
Yeah, it is the communities. The one of the best things that I find is the amount of people that connect, find each other through the podcast, and help each other to solve problems, big or small, I found that that’s probably the most rewarding part of doing this podcast, which I didn’t expect. I didn’t know that that was going to be a thing. And the conversation that you and I just had about Vivistim, that is one that I’ve been trying to do for a long time.
Bill Gasiamis 43:52
I haven’t had any luck finding people yet, drug survivors, sending me information and saying, do you know about the Vivisteam? Have you seen anyone who used it?
Jon Cross 44:06
I like to say, I’m an open book. If somebody’s got questions, send them on and I’ll do what I can to answer. But I have to say, give your spasticity taken care of before you go through the effort of getting the unit, because that was a big limiter for me.
Bill Gasiamis 44:22
How so tell me about that?
Jon Cross 44:25
Well, I even just moving my arm. It’s so locked up I can’t physically move it with the other arm, so there’s no way I can overcome my own muscles with the unit turned on. You know, they try to put you into a zero gravity position to move your limb. I feel like I’m fighting, you know, a 15 pound weight all the time when I move my arm.
Bill Gasiamis 44:55
So the spasticity kind of is, is a hurdle to what. Getting the most out of the Vivistim.
Jon Cross 45:04
Yeah, unfortunately, Botox, with the insurance that I had, was just out of sight for us.
Bill Gasiamis 45:15
As far as the cost, covering the cost and having the injections paid, covered, yeah, right, yep. And then there’s another, there’s another procedure that people are talking about at the moment, which I spoke about on the podcast a little while ago in a short one of my short videos, which was about a cryoneurolysis, or cryonerolysis.
Jon Cross 45:42
Yes. I can’t remember his name. Is it William, I think, but I have emailed with him and was trying to find a location that I could get to to get that but unfortunately, there’s no crowd trained doctors on the West Coast.
Bill Gasiamis 45:58
I think they’re running courses that they’re trying to recruit people to go and attend the courses to learn how to administer the procedure. And the doctor’s name was Paul Winston, okay.
Jon Cross 46:14
Well, thank you, Paula, and I’ve got an email from him. I gotta look that up and try to get my new doctors here to consider it.
Bill Gasiamis 46:22
Yeah, so hopefully, if and what they say about cry neurolysis Is that what you get is a long term positive result from it, unlike Botox, which is quite short term, there seems to be, for some people, quite a long term improvement in the way that the specificity feels, and it could last for some people up to a year or more. Which is I think Botox doesn’t have that type of useful time. Amount of time?
Jon Cross 47:09
No, it takes quite a while for it to actually start doing what it’s going to do. And then, excuse me, it does wear off afterwards.
Bill Gasiamis 47:21
So how, how did you go with the psychology part of this recovery? You wished you could have had somebody support you or offer you that type of service. Did you take up that later on?
Jon Cross 47:42
Well, just after understanding it, I just learned to cope with it. I didn’t really get to I tried to get in to see a neuropsychologist, and my insurance didn’t cover it, so never got there.
Bill Gasiamis 48:01
The psychologist and neuropsychologist is slightly different, though, neuropsych will determine your deficits as a result of the injury, and kind of map it to your brain and tell you that this is where your deficits are, and that kind of gives people a bit of an understanding of where they can focus their rehabilitation effort, whereas a psychologist is going to talk to you about the emotional side or or the cognitive side of the recovery.
Jon Cross 48:34
I assumed that it was just going to be the cognitive side to let me understand what I was up to for a challenge. Thankfully, my daughter had a little bit of a medical schooling, so she kind of knew what was I was in for, and she and my my wife, talked and clued me into stuff, so I didn’t like have fits of rage, but there was times where I just didn’t control myself, like I should have things angered me easily. And looking back, I feel really bad about some of the stuff that I had done. Just losing my temper.
Bill Gasiamis 49:18
Out of character.
Jon Cross 49:21
Yeah.
Emotional and Psychological Impact
Bill Gasiamis 49:23
Pretty common. I hear that I was the same. I misbehaved a number of times, apologized later, but behaved in a way that I never behaved before, really aggressively after what I’d been through and the frustrations that I was experiencing. My wife was the person who bore the brunt of that. Who was the person who bore the brunt of your outbursts?
Jon Cross 49:50
Yeah, my wife has been just heaven sent. I can’t say much more than that. She’s. She’s just been a peach, if you will. I wouldn’t be here still. She’s held the family together for three years now, done an outstanding job.
Bill Gasiamis 50:12
So looking back, how have you changed? Obviously, not just physically and emotionally and mentally. Clearly, the strokes had an impact on on you. But how else have you changed? What? Where do you see some changes?
Jon Cross 50:30
Boy, that’s a big question. Yeah, no, still very anxious to, you know, get back to life anytime I reach out for help, it’s like I’m just trying to get back to life. Because, I mean, I took care of everything, like I was telling somebody in one of the emails I sent, you know, my poor wife has to do everything, you know, leaky faucet, taking the garbage out, everything that used to be what I did, and I enjoyed fixing things and taking care of stuff, and now I can’t do any of it.
Bill Gasiamis 51:17
And other than the things I’m sorry and other other than the things that you can’t do, what have you found out about yourself? What have you learned about yourself that you didn’t know?
Jon Cross 51:31
Yeah, well, I’m nowhere near as strong as I had hoped I would be.
Bill Gasiamis 51:39
Strong, how?
Jon Cross 51:41
Emotionally.
Bill Gasiamis 51:51
Pretty normal to have an emotional challenge after stroke, most people will Go there, and it’s hard for everybody, and getting back from there just takes a little bit of time and a lot of work.
Vivistim and Adapting to Life Post-Stroke
Jon Cross 52:08
Yeah, it does, but part of the challenge is knowing what and how to work on something, be it physically or emotionally. Like, how do I go about this, and I’m just grateful that they don’t the Old School ways of tie the good hand behind your back and say, Okay, now figure it out, because I would be lost.
Bill Gasiamis 52:34
The tough love way.
Jon Cross 52:36
Yeah. So I have a couple ideas, I will probably email you. Don’t need to waste time explaining them on the podcast, so you don’t mind, I’ll put it in the email when I send the picture of my prosthetic to you.
Bill Gasiamis 52:52
Yeah, fair enough, that’ll be fine. I’ll be happy to receive your email. All right. Thanks, Bill, you’re You’re welcome. Are you done now? Are you tired? How did we get to this stage?
Jon Cross 53:12
I’m doing good. I mean, I just want to answer any questions that you got anything else ask specific for you?
Bill Gasiamis 53:20
Okay, so I have a few more questions, so we’ll wrap it up in a little bit. But I wasn’t trying to wind you up or get you off or anything. Okay, so your engineering background, is it helpful in this situation, because engineering is about solving problems CAD and all of that is about visualizing something and finding where parts fit and how things can improve. Or if you do this, or you know what kind of result you’ll have, have you applied any of those skills into your recovery?
Jon Cross 54:06
Well, I’ve tried, but it’s also a detriment too, because you think you can get something figured out, but then there really isn’t a way. If you can’t move your dang hand, I can’t do that. It’s like something simple, like washing a pan out. It’s like, I need two hands to do it. So you’re right. It is, you know, with that background, you kind of have a different aspect of stuff. But it’s also like, I should be able to figure this out, but I can’t.
Bill Gasiamis 54:38
You can’t yet.
Support Systems and Future Goals
Jon Cross 54:42
Well, just because, you know, the solution I have in my head isn’t possible right now because I don’t have use of that hand.
Bill Gasiamis 54:50
So it sounds like you have to get creative, because a lot of people have been through what you’ve been through, and are getting about their kitchen with one hand. Right? Yeah. There’d be devices that support people getting around the kitchen with one hand now, perhaps not to wash a pan. Maybe you can outsource that one, but there might be other devices that have already been developed that would support somebody being able to, for instance, chop, chop an onion.
Jon Cross 55:20
Yeah. So one thing that was, I was very happy when my daughter told me she did this. She would challenge me with something, and I’d look at it initially and think, I can’t do that. And she’s no dad. I tried it with one hand, and I can do it. So you can do it too. So I like that a lot when you know, your support has already tried to do something that they want you to try to do.
Bill Gasiamis 55:46
Yeah, so do you think it’s just a mindset thing, that perhaps there needs to be a little more of a shift in your mindset, in how to look at a problem differently?
Jon Cross 55:58
Yeah, Instead of instantly thinking, Well, no, I would normally do that with my bad hand, but now I can’t, so I’m not going to try. So that’s a mindset.
Bill Gasiamis 56:11
So I’m not going to try. That’s probably the worst thing that somebody can do, is not fail. Yep. Because at least when you fail, you find a way, if you might learn something about why you failed or how you can perhaps decrease your chances of failing next time. Definitely if you could share one lesson from your journey so far, there’d be people watching just newly diagnosed going through the early phase of their stroke. Is this? Is there any wisdom at this stage of your recovery that you might impart on other viewers or listeners.
Jon Cross 57:02
Well, thing I’d like to say is, you know, just do your own research. And unfortunately, you got to be your own advocate. And, you know, work with it. Try to find doctors that’ll work with you. Be patient too. I found that I have have a lot of problems with patients like, Okay, I’ve already got this plan set forth, and I try to accelerate it. And it doesn’t help to try to accelerate something that’s already planned. They want to happen now.
Bill Gasiamis 57:38
And is that because that’s just the way things happened. In the past, you were able to take action and get things done when you needed to get them done, and you didn’t have to wait.
Jon Cross 57:49
I suppose that’s some of it. But you know, having, you know, such a deficit and trying to make progress, and you feel like you run into a wall every time you turn around. You want to push to get things moving further faster?
Bill Gasiamis 58:05
Yeah, that makes sense. I completely understand that. I’m not sure how that changes or shifts, but definitely trying and failing will move you closer to your goal quicker, even though it feels like a roadblock, it’s perhaps giving you some data that you can use in your own way to get to the next phase.
Jon Cross 58:37
Yeah, I think you do have to always keep trying and learn from one another for real.
Bill Gasiamis 58:48
Yeah, well, John, I really appreciate you reaching out and joining me on the podcast. Thank you so much for your time.
Jon Cross 58:55
Sure, I appreciate you giving the time.
Bill Gasiamis 58:59
And I look forward to receiving your correspondence.
Jon Cross 59:04
Okay, and I’ll update you when I get some progress going. But you know what’s up.
Bill Gasiamis 59:09
Yeah, I’d love to know how the vivistim continues to support you and help you out, and whether you can find some further support for the spasticity.
Jon Cross 59:25
Yeah, time will tell you gotta get in and have the doctor start requesting it so I can see if I can make it happen.
Bill Gasiamis 59:36
Yeah, understood. Well, thanks again, John. Really appreciate it. That was John Cross sharing his journey with vivistim and some of the emotional and physical hurdles that come with post stroke recovery. What really stood out for me in this conversation was John’s honesty, especially about how spasticity became a bigger challenge than he expected, and how small. All wins, like pinching a post at night reminded him that progress is still possible. Remember, every story shared here is for learning, not medical advice.
Bill Gasiamis 1:00:09
Always speak to your own healthcare team before making changes. If you’d like to support that. Show you can do that at patreon.com/recoveryafterstroke, and remember to check out my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, available at recoveryafterstroke.com/book. Thank you again to Banksia tech for making this episode possible.
Bill Gasiamis 1:00:32
They’re helping stroke survivors all over the world access innovative tools like the Hanson rehab club by Cerebro and everyone listening, remember you’re not alone in this recovery journey. I’m Bill Gasiamis, and I’ll catch you in the next episode.
Intro 1:00:47
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 1:01:16
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 1:01:41
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 1:02:08
While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide, however, third party links from our website are followed at your own risk and we are not responsible for any information you find there.
