Daily Limitations: Cane, Ataxia, Fatigue, and Death Book¶
Day 2 · 1:03:40 · Shawn Buckley · Vienna Demeduk · Dean Allison
- 🦯 She now walks with a cane, has severe left-hand ataxia, numbness, and cannot feel her feet well.
- 😴 Post-stroke fatigue is invisible but crushing; doctors marvel she is alive after roughly 12 strokes.
- 📓 She keeps a “death book” of passwords and wishes because another stroke could occur at any moment.
Current functional status and existential risk.
← Rehab, Repeat Strokes, and Doctors Who Cannot Speak | Q&A: Why Demeduk Took the Shot and Family Impact →
Transcript¶
Shawn Buckley · 1:03:41
Now you walk with a cane.
Vienna Demeduk · 1:03:43
Yes. And I got to the point where I almost could ditch my cane when I moved to Victoria and I worked at the—.
Vienna Demeduk · 1:03:49
I—.
Vienna Demeduk · 1:03:50
Oh my God, it was just a full-time job. I was doing a program up at UBC with kinesiology students. And, you know, you have to understand too that a lot of the— a cerebellar stroke is actually quite rare. Apparently it's like 1% of the population. And I had 3 of them in that same area. So even the physios at GF Strong didn't really know how to rehab someone like me. I wasn't your typical stroke patient.
Shawn Buckley · 1:04:18
And I just want to focus you because I just want you to be talking about your limitations today.
Vienna Demeduk · 1:04:22
So my limitations today. So like I said, when I had more strokes, living in Victoria. There is zero, zero medical help on the island. So it took me 5 months to see their stroke doc. But because I had had this happen over and over again, I kind of knew I had to just get right back into dragging myself out, walking, doing what I could do. You have to keep moving. You have to be physically active when you've had a stroke. That's where being an athlete like that saved my butt because I was able to have enough strength to get out of a wheelchair. And but yeah, so now after those strokes, that has slowed me down a lot. So now I have to use a cane. The fatigue from the strokes is beyond belief. It's not like anything you can imagine.
Vienna Demeduk · 1:05:08
Like, it's—.
Vienna Demeduk · 1:05:10
I don't, I don't know how to describe that. Like, that's the hard— that's the invisible part you don't see because, you know, I'm animated. I'm like, you know, I have a huge sense of humor. When I'm talking, I probably, especially to my family, I make myself look like I'm pretty good. Don't worry about me. It's okay. I'm okay. But the reality is, is that I'm exhausted. Like, I, I'm exhausted by the mental stress of this. I'm exhausted by the physical, like learning to walk again and care for yourself. Like, Some of the doctors I've met, um, they just don't know why I'm here. They just don't know how I'm not dead because I have had almost, I think, 12 strokes now. I'm going back to Vancouver next week to have another MRI because I haven't had one in a year. I had a stroke in January and they didn't—.
Vienna Demeduk · 1:06:02
Nothing.
Vienna Demeduk · 1:06:02
They do nothing. They've told me now they don't even know. They won't do anything anymore. They're not going to do anything else, right? I can't take blood thinners because if I take blood thinners, my brain bleeds. And that's because of the nature of the clots I'm having. They're unique to this shot. You know, I had one doctor in Victoria and I won't say his name who's helping people. He's a young internal medicine doc and my heart goes out to him. When I met him, I was more concerned about him because, yeah, he's, you know, he's just been put through the wringer.
Shawn Buckley · 1:06:34
And I just, I want to focus you again on a couple of things. So Because I just want people to appreciate it's not just walking.
Vienna Demeduk · 1:06:41
Yeah.
Shawn Buckley · 1:06:41
I mean, like, washing your hair is difficult.
Vienna Demeduk · 1:06:43
I can't—.
Vienna Demeduk · 1:06:44
This hand, I have severe ataxia. Like, I can't— I have no smooth movement in this hand. This one's normal, but that seems like not a big deal, but it doesn't coordinate with the rest of my body. And my leg does the same thing. So when I'm walking or I smash dishes a lot because things are just whacking around all the time, but I make it look easy because I'm so focused. Like, everything I do is probably 100,000 times more difficult than anybody else. I've learned not to pick things up with my left hand because I can't. And like, and this hand's totally numb. Like, this whole right side of me is numb and tingly, and it's probably from the brain bleeds because they extended outside the cerebellar area. So it affected not just my left, but my right as well. So, and I can't feel my feet very well when I'm walking. So, and I can only wear Bloodstone boots. Which sounds hysterical, but I learned to walk in those. So my brain doesn't recognize like a different pair of shoes. I can ride a bike.
Vienna Demeduk · 1:07:44
And so everyone thinks, oh wow, she's, she's good. I can ride a bike, which is kind of fascinating because of the strokes I had. My center of gravity is different on a bike. It's terrifying. I mean, I've smashed, I've crashed so many times, you know, but I'm determined to do it because I find with the strokes I've had, It might just be sheer stupidity on my part, but I pushed myself through it. So it's the only way to get better from stroke. Like, you can't be fearful of the rehab portion of it, but it is— it's brutal. It's like— it's like some weird dream. I don't have pictures of that because I didn't want to be videotaped. Like, when I was at GF Strong, it was just It was— that was tough to look at, you know.
Shawn Buckley · 1:08:33
I'm just going to cut you short again and ask you one last question.
Vienna Demeduk · 1:08:36
Of course.
Shawn Buckley · 1:08:36
And Pisa will have questions for you. Why is it important for you to be here today and share your story?
Vienna Demeduk · 1:08:44
You know what? It's important for— I've shared my story many times and I'm not— I'm very open about it because, you know, I'm walking, I look pretty gimpy. People ask me, They always think I've had my hip replaced. I'll tell them what's happened. And most of the time it's like deer in cotton headlights, right? It's like, they don't want to talk about this, right? But there were people that I met on this journey that literally don't have a voice. Like one of my good friends, I won't say his name, at GF, he has aphasia from strokes. He can't speak at all. And clearly I can speak. So I want to speak for on behalf of him and all injured people. There's people here who have been with me the last day or so that because of lack of, you know, time, they're not speaking. But I want to speak for those injuries because you know what? I have injuries that are obvious. Like you can look at an MRI, you can see all the clots. These people that don't even have that type of, you know, black and white kind of situation, They're— I just feel my heart goes out to them.
Vienna Demeduk · 1:09:51
I can't even get any kind of help, right? Like, what has happened to me is a death sentence. That is the reality. Like, I literally have a death book at home. I've got like where I'm going, what I'm doing, my passwords to stuff, because I can die. Like, I could have a stroke right now and you guys are gonna have to deal with that. But it's happened so many times to me that, um, I never know when it's going to happen, how it's going to happen. I can just be just sitting there having a cup of tea. I had a stroke, right? So that's the reality I live under every single day. And do I think anything's going to come out of this? I don't know. I appreciate, Dean, that you're doing this. It's huge. And for you showing up to this is important. And you, of course, Sean, it was wonderful to meet you. Um, but I don't know that it's going to go anywhere. And everything Michelle said about that vaccine injury support program, and that thing is a colossal joke. I mean, they've asked me now to redo my appeal, you know, because they don't have— they've lost it.
Vienna Demeduk · 1:10:55
I, yeah, no, I'm not gonna—.
Vienna Demeduk · 1:10:57
I am not going to do this again. No, I, you know, the amount of the work you have to put into— and I, I live alone, I'm by myself, like, I had to do all of this by myself.
Vienna Demeduk · 1:11:09
All of it.
Vienna Demeduk · 1:11:11
The rehab process of it. All of it. And I'm okay with that. I'm tough, but I'm not going to do the appeal again.
Vienna Demeduk · 1:11:17
I'm not even going to bother.
Vienna Demeduk · 1:11:18
But I want you to know how bad that program is. Like, it's beyond bad. Like, I can't even describe this. Anyway, I'm here also, like I said, to make a difference. I don't know.
Shawn Buckley · 1:11:31
Just because I want the MPs to have an opportunity to ask questions.
Vienna Demeduk · 1:11:34
Okay, thank you.
Shawn Buckley · 1:11:35
Thank you.
Dean Allison · 1:11:39
Thank you for being here to testify and tell your story.