Conversations with StrokeLine – Setten Stephenson episode two

StrokeLine’s Physiotherapist, Kath Yong, talks with Setten Stephenson.

In this episode they cover topics including Facing mental and physical challenges, getting back to cooking ad accessible tools.

To watch all the series click here.

Transcript:

Setten Stephenson:
From physical point of view-

Kathrine Young:
Yes.

Setten Stephenson:
It's go, go, go.

Kathrine Young:
Yeah.

Setten Stephenson:
But to get better, and to reach those goals, that I'll want to kind of get to, I've got to do it.

Kathrine Young:
Yeah, sure. Yeah. And so you also described your hand as well as your leg. Was your hand also affected after the stroke as well as your leg, Setten?

Setten Stephenson:
Yep. Essentially I've got right-sided hemiplegia, which means as you know, the right side of me is not functioning properly. I.e., my brain's not talking to it. So slowly things are coming back online. You're correct? So the right hand, I'll wave, is very stiff.

Kathrine Young:
Stiff.

Setten Stephenson:
And it's not exactly, I guess, wanting to do what I want it to do. So to grab something, I'll use my left hand, because it's quicker and simpler and I won't make a mess. Yes. That's the trick, is that you've got to obviously use your right hand to get it better, but I've got it my head to kind of do that. So yes, right hand-

Kathrine Young:
Right hand.

Setten Stephenson:
But it's the right forearm, upper arm, shoulder, and then down your ribcage, all those little muscles have collapsed or not being used. Then into the hip, leg and foot. Foot is my major bane at the moment because there's no I guess movement. The big toes don't move. The foot kind of comes over. And so to actually get walking, I need to plant it right. So yeah. It's pretty much everything. I have to say I'm fairly lucky with the speech. Although words still escape me. I'm still grabbing for the words. They're there, I can see them. I just can't use them, which is kind of getting better. The funny thing about, I guess, the right sided hemiplegia, it's the left side of the face that doesn't function very well.

Kathrine Young:
Yeah, sure.

Setten Stephenson:
My sight is pretty much, it's okay. It's just I find it hard to zoom in on things. It's all muscular related. They get sore very quickly. Fatigue is a massive issue, but I think everyone has... Well, everyone has it. The stroke patient, I guess it's exaggerated. So when you feel tired, we feel tired four times. So it's like, "Ugh." But then I try and work through the fatigue, but that's when accidents happen.

Kathrine Young:
Sure.

Setten Stephenson:
I spill stuff. Things can go everywhere. My food's not tasting the best. And then we kind of get frustrated.

Kathrine Young:
Frustration. Yes.

Setten Stephenson:
And impatient. And then it gets worse, so I've got to learn just to stop, count to 10, and welcome Zen into my life.

Kathrine Young:
Yeah. That word Zen.

Setten Stephenson:
That word Zen. Yes.

Kathrine Young:
You mentioned about cooking, Setten. How do you go with that right hand and what's that kind of trade-off between using your left and using your right or using together? Is this there anything that you try to do that helps, or that other people who have had a stroke might also benefit from hearing about?

Setten Stephenson:
Going back a bit, we start with packet mixes. Your canned tongue, or just your average quick meals. Try and stay away from takeaways, like pizza and everything. That's where it starts. Then you kind of just accelerate, and push yourself to cutting. I think I put a post that eggs are a joke on stroke patients.

Kathrine Young:
I do too.

Setten Stephenson:
As our carrots, as our potatoes, because they're slippery little suckers, right? They fly everywhere. I think to kind of grab them and to cut them, you're always scared about cutting your fingers and all the rest of it, because really, who wants more blood in their dinner than in your body.

Kathrine Young:
So true. Yeah.

Setten Stephenson:
But anyway, I guess the best thing I ever bought were, there's knives that you can grasp with your fist.

Kathrine Young:
Okay, yep.

Setten Stephenson:
And cut down.

Kathrine Young:
Great.

Setten Stephenson:
They have been a godsend. And I think they're very helpful. I think the worst thing I personally bought was a chopping board with all the grabbers and spikes, because I ended up putting more blood into the dishes using that.

Kathrine Young:
Oh gosh.

Setten Stephenson:
It's just things that've got to use, and try. Now I'm at the stage of... We just bought a... It's kind of a fake thing Thermomix.

Kathrine Young:
Yeah. I was going to ask about it. Yeah.

Setten Stephenson:
[crosstalk 00:05:33] That does everything. That is a great help. So essentially, you put all your stuff in, so you put your onions in, your carrots. You can chop it at the touch of a button. You don't get any of the tears from onions. It tells you can saute it, and there's so many recipes to follow. And really it's your basics, you don't need any of your tins or your packets. It's really good. And I think by all accounts, the kids are liking it. So that's kicking goals.

Kathrine Young:
Yeah, nice.

Setten Stephenson:
And that is, I think, a big help to me. I guess, pushing beyond that, then I'll go to a fry pan, then I'll go to a wok, or something like that. At the moment, heat's not my friend. Touching hot plates. I've burnt myself so many times. I try not to use the oven. That's when the wife and kids come along and help me put stuff into the oven, or whatever. But yeah, there are a few tricks that I don't want to go near. Making soups, scalding it is not very nice.

Kathrine Young:
No, not at all. Yep.

Setten Stephenson:
No. I've got all my fingers, so that's a good thing.

Kathrine Young:
That's good. So would you say, Setten, that there is times where, sometimes you do need to ask for help and get someone else to help you? But then other times, there are ways to get around it, as well as things that could help you like the fake Thermomix as well?

Setten Stephenson:
Yes. Most definitely, there's a common place for help. Again, I'm not a very good delegator. I guess I've been brought up with a lot of pride. "I can do it, and I'll do it, and I don't need any help," to the point where I go, "You know what? Can't do this." So, "Can you put this meal together? I've cooked all the bits, just put it all together, and into the oven." I really enjoyed welding.

Kathrine Young:
Yes. I saw that talk.

Setten Stephenson:
And you know what? A welder in my hands, probably not a good idea. Again, cutting down trees with the chainsaw. I'll give it a go. I started it up, and then I thought, "I'm on that many blood thinners. Probably not a good idea."

Kathrine Young:
Maybe not.

Setten Stephenson:
That's when I go, "Right, I can't do it. I've got to hand it over." Or just forget it. I've got a gardener that comes around and does the garden. He just goes, "I'm going to get rid of the chainsaw, because I don't trust you." Things like that. But to actually get back to normal, and do what I love doing, I've got to want to do it. I've got to take the risk, but I've got to know where to stop.

Kathrine Young:
Yes. And I think I read somewhere where you said something about, if you accidentally dropped something, or if you spilled something, then you were like, "Okay, well, hang on a sec. This is like an extra bit of therapy as well." Is that how you look at things as well, Setten?

Setten Stephenson:
Exactly. I think I mentioned there that I'll accidentally tip or accidentally deliberately tip the peg basket over. That makes me pick it up and put everything together. As I just mentioned, we've just got a puppy.

Kathrine Young:
Yes.

Setten Stephenson:
We're toilet training him, so he's actually doing me a lot of good in therapy. I have to clean up wees. I have to all this, that, and the other. Bend down, pick up, wash out. So that all increase the therapy.

Kathrine Young:
Exactly.

Setten Stephenson:
And in that, even though it's kind of unwanted, but it's there.

Kathrine Young:
Yes. And I like that you kind of incorporate your therapy into everyday activities, don't you?

Setten Stephenson:
Pretty much every activity that you do has a degree of therapy. Hanging out the washing, I have to lift both arms up, and use the pegs. I have to manipulate the washing. Washing is hot and cold. The air temperature is cold. And so I have to get used to that. To do it, I have to put on my shoes. Tying shoelaces. Puppy eat the shoelaces. I think everything you do has a little element of therapy. Now I know that I've spoken to a few people, and they go, "Well, I don't want to do extra stuff, because I know what's involved. So you know what? I'm going to lie in bed and not have to worry about that, or I'm going to sit in front of Netflix."

Setten Stephenson:
I'm not that sort of person. I can't do that. I think actually, funnily enough, the stroke has said, "Well, I can't do that." So watching television is quite hard for me. Sitting down for any length of time, and I'll be getting to my limit now, but it's very hard because really there's no meat on my tush anymore, so it's kind of... I get fidgety, I have to stretch. I have to return some, I guess blood flow to my legs, so I have to be on the move. I can't really speak for other people, but that sort of movement is very helpful for me.

Kathrine Young:
Very helpful. Yeah. Okay.

Setten Stephenson:
I guess the other thing is, I need more sensation under my feet. So having shoes on all the time is actually not good. So you end up with pressure sores, swollen feet. And I need kind of a little bit of... I don't know, concrete under my feet just to feel what's there. Yeah. I think everything I do, it's...

Kathrine Young:
It's part of... Yep, yep. Okay. That's great.