Conversations with StrokeLine – Setten Stephenson episode three
StrokeLine’s Physiotherapist, Kath Yong, talks with Setten Stephenson.
In this episode they cover topics including riding a recumbent bike, getting back to driving and learning from failure.
To watch all the series click here.
Transcript:
Kathrine Young:
You have a recumbent bike now Setten or you are looking into that?
Setten Stephenson:
No. So, I joined a recumbent cycling group.
Kathrine Young:
Yes.
Setten Stephenson:
Just recently up the road from us, so that was part of my Friday activity.
Kathrine Young:
Yes.
Setten Stephenson:
Unfortunately they had to move.
Kathrine Young:
Okay.
Setten Stephenson:
Because the place was owned by a driving school and obviously you don't want learners on the same road.
Kathrine Young:
Yeah.
Setten Stephenson:
And I guess I was the only stroke person. There are other brain injury people there. Cause there's lots of different degrees of assistance that was required.
Kathrine Young:
Yes.
Setten Stephenson:
So to keep an eye on me, who wanted to go around the track at a million miles an hour, to look after someone that couldn't really pedal.
Kathrine Young:
Yes.
Setten Stephenson:
And there was no resources. So it was very difficult for them to manage. As it turned out, they had to move, I had to go to an exercise physiology. So it worked out quite well. From that I met somebody who was developing a recumbent bike that was static. And I sat alone and he was trying to develop it. And because I could think and look and play with a bit of technology, he wanted to use me for a bit of feedback. They drop one off at my house.
Kathrine Young:
Oh wow.
Setten Stephenson:
And it's connected to the internet. It's got a screen and you essentially go through a few games as you will.
Kathrine Young:
Yes.
Setten Stephenson:
Which tries out a lot of cognitive behavior.
Kathrine Young:
Yes.
Setten Stephenson:
So you've either got to catch butterflies or [crosstalk 00:01:43] shoot aliens or collect groceries.
Kathrine Young:
Yes.
Setten Stephenson:
Just right for your mind and memory as well as the components of steering.
Kathrine Young:
Yes.
Setten Stephenson:
And peddling.
Kathrine Young:
Okay.
Setten Stephenson:
So he was developing it more for brain injury through motorcycle accidents, car accidents, falling off balconies, all that sort of stuff.
Kathrine Young:
Yes.
Setten Stephenson:
But now he's actually found that it's helping me.
Kathrine Young:
Yeah.
Setten Stephenson:
Because I know how to turn the machine on, do this, work through it. The cardio workout is great in itself. And he goes, "Well for stroke people, this is actually a fantastic device." So he's just developing it a little bit further.
Kathrine Young:
Yes.
Setten Stephenson:
I've got mine. And I think now he's going to try and release it to physios to get them to see what it's like.
Kathrine Young:
Yeah, sure.
Setten Stephenson:
Yes, I've got into recumbents, without the risk.
Kathrine Young:
Yeah.
Setten Stephenson:
But what my goal is, well-
Kathrine Young:
Yeah.
Setten Stephenson:
My goal is to get back onto my mountain bike but one step at a time.
Kathrine Young:
Yes.
Setten Stephenson:
I might look at a recumbent with off-road tires. Then I might think of a pedal assist. So it has a battery power.
Kathrine Young:
Yes.
Setten Stephenson:
They come at a premium. So very expensive. I don't have $20,000.
Setten Stephenson:
And then I'd have to go through the whole sponsorship and I've gone, well, is it worth it? How often will I use it?
Kathrine Young:
Yes.
Setten Stephenson:
So you've got to go through all of that thinking.
Kathrine Young:
Yes.
Setten Stephenson:
I guess my main goal at the moment and it's this Wednesday. I've got an assessment for my driver's license.
Kathrine Young:
I saw that blog as well. Yes. Yeah. Okay. How's that all going? Yeah.
Setten Stephenson:
Don't know yet but we'll find out Wednesday.
Kathrine Young:
Yeah.
Setten Stephenson:
So I guess it all started with, first of all, I had to get my learners license. I had to get a license to get on the road.
Kathrine Young:
Right.
Setten Stephenson:
That's step number one.
Kathrine Young:
Yes.
Setten Stephenson:
I guess anyone that knows dealing with government red tape, through RMS or whatever, is a little bit of a challenge.
Kathrine Young:
Yes.
Setten Stephenson:
Anyway, six months later, all the docter certificates. I got there, got it all signed off.
Kathrine Young:
Yep.
Setten Stephenson:
So essentially now I've got to go through this assessment, where I've got an OT coming down and going, "Is your eyesight good?"
Kathrine Young:
Yes.
Setten Stephenson:
"Is peripheral sight good?"
Kathrine Young:
Yep.
Setten Stephenson:
What sort of modification would I need? Would I need hand controls?
Kathrine Young:
Yes.
Setten Stephenson:
I mean, an automatic is given. [crosstalk 00:04:23] What would my foot look like? Can I go from the accelerator to the break? All of those sort of stuff.
Kathrine Young:
Yes.
Setten Stephenson:
So I'm getting that's what this assessment will be.
Kathrine Young:
Yes.
Setten Stephenson:
Then it's, "Look, you're not ready. Come back in three years or we'll get you a learner car and let's put you on the road."
Kathrine Young:
Okay.
Setten Stephenson:
Now I don't know what this looks like. Will they give me a set perimeter of where I'm going? So maybe a 3K radius of my home or is it, I can't imagine I'll be towing anytime soon because I was a big driver and [crosstalk 00:05:01]
Kathrine Young:
I heard, yeah. [crosstalk 00:05:02] Wow.
Setten Stephenson:
Towing caravans around Australia. [Crosstalk 00:05:05] That might change.
Kathrine Young:
Yes.
Setten Stephenson:
And I'll just work up to that. I'm in no hurry.
Kathrine Young:
Yep.
Setten Stephenson:
For driving, don't know what that looks like but again, we'll get there.
Kathrine Young:
Yeah.
Setten Stephenson:
I guess that blog that I put up about the learners...
Kathrine Young:
Yeah.
Setten Stephenson:
That will be part one of, I don't know how many parts but I'll progress. Well, I'll obviously update as I progress.
Kathrine Young:
Yeah.
Setten Stephenson:
So we'll see what that looks like.
Kathrine Young:
Yeah. I'm curious to know Setten, cause it sounds like you're doing things at home, you trying to get therapy, within that, getting your driver's license. How do you, for people watching this, how do you go with, if you feel like you're not getting where you want to get to, or if you're feeling like you had a setback? What are your thoughts on that? How would you kind of push through that or...
Setten Stephenson:
Pushing through...
Kathrine Young:
Yeah.
Setten Stephenson:
Look, with everything, even in normal life...
Kathrine Young:
Yeah.
Setten Stephenson:
You have setbacks.
Kathrine Young:
Yes.
Setten Stephenson:
One of the big things I've learned is, you actually learn from failure.
Kathrine Young:
Yes.
Setten Stephenson:
And I guess that's how I deal with it.
Kathrine Young:
Yes.
Setten Stephenson:
If something doesn't work, my welds don't look good. Well, heck, look at me. I can imagine why. I'm trying to do something where I need two hands...
Kathrine Young:
Yes.
Setten Stephenson:
But I'm using one hand.
Kathrine Young:
Yes.
Setten Stephenson:
Put it down, walk away.
Kathrine Young:
Yes.
Setten Stephenson:
Now, I guess the hardest thing about us is that we remember what we were like and it's very clear. I remember when I went scuba diving. I remember when I could thread a hook and fish.
Kathrine Young:
Yeah.
Setten Stephenson:
I remember what it was like kayaking, canoeing, abseiling. Remember all that. Just got to remember I can't do it at the moment but I'll get back there.
Kathrine Young:
Yeah.
Setten Stephenson:
Whatever it looks like.
Kathrine Young:
Yeah.
Setten Stephenson:
So, frustration, yes.
Kathrine Young:
Yes.
Setten Stephenson:
A 100%.
Kathrine Young:
Yeah.
Setten Stephenson:
I'm not one to chuck a tanty but I have.
Kathrine Young:
Yeah.
Setten Stephenson:
I think I put up on one of the messages that, Samsung make a very strong mobile phone. Ask me how I know because that thing is flying across this room multiple times.
Kathrine Young:
Yeah.
Setten Stephenson:
So it's amazing the TV's not broken.
Kathrine Young:
Yeah.
Setten Stephenson:
But again, I think the biggest thing is I have to count to 10.
Kathrine Young:
Yeah.
Setten Stephenson:
And just go, right, no, not ready for this.
Kathrine Young:
Yep.
Setten Stephenson:
And I'll leave it, ask for help, if it's desperate.
Kathrine Young:
Yes.
Setten Stephenson:
Or just try it again a bit later.
Kathrine Young:
Yeah.
Setten Stephenson:
I guess I have to think about things, for example, I helped one of the kids change a brake caliper on a car.
Kathrine Young:
Yes.
Setten Stephenson:
Well, I can't do it. So trying to, I guess, guide him...
Kathrine Young:
Yes.
Setten Stephenson:
How to do it. I'm a very touchy sort of person.
Kathrine Young:
Yeah.
Setten Stephenson:
I'm not a very good visual person. So I have to actually feel it and mess around with it.
Kathrine Young:
Yes.
Setten Stephenson:
So it's very hard pointing going, "No, just, the line and do this, do that. No, not upside down." And then I just go, "Oh my gosh. We're both getting frustrated. Let's go and have a drink and come back to it."
Kathrine Young:
Yeah, sure.
Setten Stephenson:
So there's lots of ways to deal with it. Do I do a good job? I don't know, it seems to work.
Kathrine Young:
Yeah.
Setten Stephenson:
I guess the hardest thing is technology [crosstalk 00:08:45] for me. I mean, we grew up with a phone that you used the dial.
Kathrine Young:
Yes.
Setten Stephenson:
And the kids would laugh at us and go, "Here on my, well on Zoom, on a mobile or YouTube. [Inaudible 00:08:59] stuff." And I guess the kids are on lots of platforms like Snapchat, Instagram. Oh my gosh. Even my wife goes, "Well for us to keep up, [crosstalk 00:09:11] we have to." And it's like, I've got more stuff important for me. I've got to cook a dinner, I've got to go do the washing. I've got to do rehab.
Kathrine Young:
Yeah.
Setten Stephenson:
I guess technology is very frustrating.
Kathrine Young:
Yeah.
Setten Stephenson:
But it's seeing all my mates ride bikes.
Kathrine Young:
Yeah.
Setten Stephenson:
I want to get back on that. I want to go for that dive again.
Kathrine Young:
Yep.
Setten Stephenson:
We went out on a houseboat the other day, couple of weeks ago, so everyone went in for a swim. I couldn't.
Kathrine Young:
Yeah.
Setten Stephenson:
And then I thought, this isn't kind of nice.
Kathrine Young:
Yep.
Setten Stephenson:
But at least I'm out here, I'm enjoying, I'm watching the kids fish [inaudible 00:09:54]. And I thought I'd try my hand. I don't know if I put it up. Kayaking.
Kathrine Young:
Yes.
Setten Stephenson:
In my mind, saying I'm not a very visual person but I can visualize myself paddling. And I thought, well, how hard can this be? It was hard.
Kathrine Young:
Yeah.
Setten Stephenson:
I mean, getting onto it, it's very tippy and I'm holding an actual paddle going through the motion.
Kathrine Young:
Yes.
Setten Stephenson:
But then you have the oar to stabilize. It's just lots of things you don't think about.
Kathrine Young:
Yes.
Setten Stephenson:
So I get off it. Again, thankfully, I had a brother-in-law, he's a fireman. He helped grab me by the jacket, lift me up and I did it once and I thought, goal reached. Next time, I'll go from the bank where the fall isn't greater and there's no big sharks in them.
Kathrine Young:
Yeah.
Setten Stephenson:
So yeah.
Kathrine Young:
Yeah.
Setten Stephenson:
You know [crosstalk 00:10:54] that again is how I deal with things.
Kathrine Young:
Yeah.
Setten Stephenson:
I think the major thing is that you can't do anything without risk. And I know you've got to take risks, get to a certain goal but as you remember, I broke my hip-
Kathrine Young:
Yes.
Setten Stephenson:
Last time I took a risk. So the confidence kind of takes a big dive. So it's a bit of a catch-22.
Kathrine Young:
Yes.
Setten Stephenson:
Not going to progress without risks.
Kathrine Young:
Yeah.
Setten Stephenson:
Not going to progress if you are too risky.
Kathrine Young:
Yes.
Setten Stephenson:
And you do something stupid.
Kathrine Young:
Yes.
Setten Stephenson:
I have to take a risk.
Kathrine Young:
Yes.
Setten Stephenson:
But again, it has to be calculated risks.
Kathrine Young:
Yeah.
Setten Stephenson:
So with people around me when I do my paddling, on the houseboat, wear a life jacket. Yes I might look stupid but whatever.
Kathrine Young:
Yeah. I think that's really great words Setten.
Setten Stephenson:
Yeah.
Kathrine Young:
I think a lot of people can learn from that and yeah. Anyone really, I guess, anyone can really learn from that. Yeah.
Setten Stephenson:
Look, I mean, as I've said to all my physios and [inaudible 00:12:05] and yourself and StrokeLine, I'm there to educate people...
Kathrine Young:
Yes.
Setten Stephenson:
On living the experience. But if anyone can learn from this, I'll put my hand up and help. I'm in a position where it's pretty crappy but I'm not alone here.
Kathrine Young:
Yeah.
Setten Stephenson:
I mean, strokes only one part of it, I mean, what about those people with brain injuries [crosstalk 00:12:32] ?
Kathrine Young:
Yes.
Setten Stephenson:
Amputees.
Kathrine Young:
Yes.
Setten Stephenson:
At rehab, there was a lot of amputees. I still got my legs.
Kathrine Young:
Yeah.
Setten Stephenson:
They just don't work properly.
Kathrine Young:
Yeah.
Setten Stephenson:
But I am not in a major or worse position than these people.
Kathrine Young:
Yeah.
Setten Stephenson:
It's going to take time to fix but it will fix.
Kathrine Young:
Yeah.
Setten Stephenson:
And I know there's a lot of work at the moment about brain plasticity, all those beautiful catch words which I'm starting to learn.
Kathrine Young:
Yeah.
Setten Stephenson:
But in a way we're living proof of this.
Kathrine Young:
Yes.
Setten Stephenson:
The brain does actually mend. I mean, I see little developments where my thumb doesn't move but now my fingers do. And that's a good progression. [crosstalk 00:13:21].
Kathrine Young:
Yeah.
Setten Stephenson:
Somewhere up in there, up in the ether of my head.
Kathrine Young:
Yeah.
Setten Stephenson:
Nothing's working.
Kathrine Young:
Yes.
Setten Stephenson:
So I did a scan at one of the clinics and they took a before and after shot and they just said, "Well, there's the damage but is the growth around it?" It's trying to rewire itself.
Kathrine Young:
Yes. Excellent.
Setten Stephenson:
Like anything, all the wires are attaching. I've just got to use it. So that wire has got to talk to my little toe.
Kathrine Young:
Yeah.
Setten Stephenson:
And that's, I guess, where these neurophysios come in and they just basically go, "Right. We've got to do... I don't know if you've heard the catch phrase, 'got to do it a thousand times'-"
Kathrine Young:
Yes.
Setten Stephenson:
To actually log in.
Kathrine Young:
Yes.
Setten Stephenson:
No one can do it a thousand times.
Kathrine Young:
Yeah.
Setten Stephenson:
It's [crosstalk 00:14:07] and my little finger-
Kathrine Young:
Yeah.
Setten Stephenson:
Is getting exhausted.
Kathrine Young:
Yeah.
Setten Stephenson:
What we're going to have to do is develop something like brushing your teeth, brushing the dishes, that sort of thing to actually get that movement.
Kathrine Young:
Yeah. True.
Setten Stephenson:
There's a lot of tricks to the trade that, I guess, I'm working through.
Kathrine Young:
Sounds good.
Setten Stephenson:
You got to remember that physios know everything, theoretically, but when you put it in practice, even they're learning from me. They going, "Oh, that's not working." In my brain, that's what you should be doing but it's not going to work. We'll have to find something else.
Kathrine Young:
Yes.
Setten Stephenson:
It's actually a great opportunity for-
Kathrine Young:
Yeah.
Setten Stephenson:
Everyone involved.
Kathrine Young:
For sure.