After a successful career in IT working in the finance industry, Patrick Burke was forced to take medical retirement as a result of Multiple Sclerosis. After initially struggling to adjust to his new "normal" he now spends much of his time exploring the impact of his condition and how it affects others. He continues his search for things that will either make life easier or that will specifically address the barriers MS puts his way.
Patrick has been a panel member for Research Institute for Disabled Consumers (RiDC) for over five years. He clearly enjoys the world of "gadgetry" and his website aid4disabled https://bit.ly/3no2zfo often features devices that he has used.
In this podcast, he shares his thoughts about two gadgets which live in his kitchen and two devices that help him stay mobile.
OXO Measuring jug
Phil Friend 0:11
Hello, everyone, Phil Friend here once again with the Gear Gadgets and Gizmos podcast and I'm delighted today to have Patrick Burke on the programme who is one of our panel members. How long have you been a panel member, by the way, Patrick?
Patrick Burke 0:27
Four or five years,
Phil Friend 0:28
Oh, long-standing long standing panel member, and but he's decided to kind of put his head above the parapet and share with us. Some of the things he's using, he's got three things that he's using, which I think will be of interest to all of you. But before we get to that, I'm just going to ask Patrick to just introduce himself and say a little bit about the situation and, and so on. So over to you, Patrick.
Patrick Burke 0:50
Hello, I'm Patrick Burke, I've got advanced multiple sclerosis the impact of that is that I cannot walk unaided, I have to use a rollator or walking aid which is one of those things your granny uses with four wheels and two handles you have to hold on to. So there are all sorts of some hidden disabilities that go on with multiple sclerosis. I mean, things like I can't write. Now, I don't have a post-it that says I can't write. And numerous sorts of cognitive issues. The only real way to find out about it is to come and live in the house, then you'll see what the problems really are. Because they're just numerous, diverse and too complicated.
Phil Friend 1:37
What did you use to do then? I know you said to me before we started that you retired some time ago now. But what was your career? What were you involved in? Where you did work?
Patrick Burke 1:48
I was a computer analyst programmer working in back-office banking, worked all over the world.
Phil Friend 1:55
Okay, so yes. And your current situation married at home?
Patrick Burke 2:00
Married living with my wife, the children have fled the nest. It's a kind of existence I found medical retirement well, with the benefit of hindsight, absolutely horrible. But I've kind of got used to it. I've got myself involved in other things. I work as a volunteer for the local community radio station. I'm a service user helping nurses at, um, local universities, talking about long term conditions. And I've got my fingers and various other pies as well.
Phil Friend 2:38
So you're a bit you're busy, but not doing what you would have perhaps expected to have been doing has MS not kicked in at the time it did. So. Okay, well, that's that set the scene for us very nicely. Now you, as you know, the programme's about the sorts of things people use to overcome the barriers that their impairment or disability throws up at them. So what are we going to kick off with? What's the thing we're going to talk about first, Patrick,
Patrick Burke 3:02
First going to talk about this, this measuring jug. The big advantage with it is, is you've got the measurements inside it.
Phil Friend 3:12
Right? So they're not just down the side like a traditional measuring job would have it down the side.
Patrick Burke 3:18
So the great thing is my balance is not good. I can't stand I'll have to hold on to something when I stand. So if I'm holding a measuring jug with a kettle of hot water, I'm pouring it in when trying to stand. I will miss. Yeah, that's a given. And that's dangerous. And I can't do that. So the big advantage with this measuring job is you can put it on a work surface on the table and then you can sit down on your stool or whatever it is, and then pour something into it. And look down into these measurements that you can see. See that you've measured the right amount of liquid. So it really just makes up something which an able-bodied person takes for granted. They can stand there and pour hot water into a jug and then pour it into a saucepan while still holding the kettle
Phil Friend 4:15
Yes, yes. So what is it got a name this jug is it made by a specific company?
Patrick Burke 4:21
Made by a company called OXO
Phil Friend 4:23
OXO Good old OXO, so yes, well, we know all know about them. Okay,
Patrick Burke 4:28
It's got a very easy to grip handle.
Phil Friend 4:32
Yes. And it's plastic.
Patrick Burke 4:35
It's plastic. Shatterproof, I think and it's got the measurement in millilitres and fluid ounces. You can get it from very small quantity up to a litre. And you can buy them on the internet coming onto Amazon. Two or three shops that sell them it's just something which we use.
Phil Friend 5:03
I think the thing that's lovely about it is that with a very minor adjustment to it, ie the numbers inside the amounts inside, it's transformed itself from being a pretty standard piece of kit that every house has got to being a very cleverly helpful piece of kit for people whose balance isn't good and so on and so forth over. I can think of thousands of people that would welcome this piece of advice, because I'm sure you're not alone in you know, not about MS. But somebody who's feeling a bit frail doesn't want to hold heavy thing's, it would work perfectly, wouldn't it do any idea of price? Was it a very expensive item?
Patrick Burke 5:41
Phil Friend 5:42
Right, right. Right.
Patrick Burke 5:43
I think okay, two-pound fifty to three pounds? The other thing I like about it, is just put it in the kitchen, it doesn't look as if it's designed for a disabled person.
Phil Friend 5:54
No, that's right. That's good isn't it
Patrick Burke 5:56
I'm very conscious that so much that is on the market for disabled people is obviously for a disabled person it looks clunky, its white. Um, and it's just got, it just looks as if it's designed for someone who is not a normal man or woman.
Phil Friend 6:16
Yes. And of course, the other thing that we tend to see, I don't know if you agree with this statement is that it doubles in price. So anything with the word disability in front of it is going to cost you more than it would if it didn't have the word disability in front of it. Although your measuring jug doesn't do that, which is also interesting. It doesn't look like something designed for a hospital ward. And it also is pretty cheap, which is great. Okay, so that that deals a one the first item, which is obviously a kitchen, mainly a kitchen appliance type thing. What's your second one? What's the second thing?
Patrick Burke 6:53
One of the problems I have is that I it's not so much gripping? It's it's, it's holding things. Like for example, holding a pen to write I find, I find it very difficult. Um, so a lot of kitchen cutlery is very light. And you don't get a sensation of holding it when you are holding it because there's no weight. There's no shape to it. There's no sensation. So the next thing I'm going to talk about is this thing called Knork or Knork
Phil Friend 7:26
Knork k n o r k? Yes and it and it's a fork effectively, it looks like a fork.
Patrick Burke 7:30
Yeah, it is. But the great thing about it is, you can see it's got a shape.
Phil Friend 7:41
Mm hmm. curved yes
Patrick Burke 7:42
So it sits naturally in the hand It's also got some weight to it. So you know that you are holding something? When you hold it?
Phil Friend 8:01
Patrick Burke 8:02
And it's it just makes things like twirling spaghetti easier.
Phil Friend 8:08
Patrick Burke 8:09
That makes eating pasta easier. And because it's like, if you're cutting something, you hold it like this.
Phil Friend 8:20
So you can press it down with your finger. Yeah, so you can put weight on it to hold it in place while you saw away with your knife. Do they come as a matching set, by the way, Patrick, can you get a knife that matches that sort of shape?
Patrick Burke 8:35
I've only ever been put on to this item, this was suggested to me by my OT. Um, it's supposed to be a knife as well. But um, it's not. Don't, don't be fooled, but just having that extra width and the curves. I mean, if you look at most forks that you buy in a shop or antique forks, they're flat, you haven't got any, they don't fit across the hand.
Phil Friend 9:06
It just I suppose what you're saying is that, in many ways, it's a very beautifully balanced thing. It kind of sits, it feels comfortable in your hand because it's the right shape. But it's got sufficient heft to it a bit of weight to it that, particularly with your MS. You know, you've got it and you know you're dealing with it. So it's and it looks I mean, our listener can't see this, but it and I will, of course, put pictures and so on the site, but it looks very nice. It's elegant. It's a good piece of, no home should be without an elegant fork.
Patrick Burke 9:43
Well, it's just um, my OT showed it to me and I just took a liking to it. Because once again, it's got style it doesn't label you as being disabled or being someone without whose functionality is not as good as it should be?
Phil Friend 10:04
Yes, I mean, you said earlier on, and this clearly this matters to you. And it matters, I think to a lot of disabled people. It's one thing to have a disability and be managing it, it's quite another to have a great big label that says, I am disabled. So what you want is to buy things that serve you well, but don't proclaim, you know, that you've got a disability, I think grab rails, for example, are a good example of that. Why can't we have all sorts of different coloured rails and, you know, have them seated and sited around the place? Which don't say this is a hospital ward? You know, that's important to you. Isn't it Patrick? You've mentioned it a couple of times.
Patrick Burke 10:43
Yes. I mean, we went expensive buying stainless steel grab rails, as opposed to the bog-standard white plastic ones that an OT would supply you with? and we said, No, we don't want that. We want something that doesn't stand out and say, this is for a disabled person.
Phil Friend 11:02
Yeah. Yeah. And I think it's gonna be designed form and function form and function.
Patrick Burke 11:07
Yeah. And I think that's what is really important in life. And that is, I was offered a Rollator later on, by my OT through the NHS. And it was a cheap and cheerful number that cost about 25 quid. And it caused untold damage because it had rough edges, which rubbed against the paintwork the woodwork. It was clumsy, it didn't fold up properly, difficult to put in a car. And it was designed for a price as opposed to being designed for its practical use. I ended up buying a Troja rollator. Because it folds up and it stays folded. And it looks good.
Phil Friend 12:00
I see what you've done here. You've been very clever because you've slipped in another gadget without us realising it! I think it's very subtle, but important because you're so right. You know, I'm in a wheelchair, which cost me a lot of money. And part of the reason that it cost me a lot of money is that it looks nice. It's not just about what it does. It's how it does it and how it looks when you're doing it and so on. That leads us really to your third thing, which is a mobility scooter, isn't it but yours is not the kind of thing that comes to mind when we say mobility scooter. Do you want to tell us about that?
Patrick Burke 12:40
I use a mobility scooter. It's a lightweight three-wheeled mobility scooter. That is called the TravelScoot.
Phil Friend 12:49
Right, Travel Scoot,
Patrick Burke 12:55
It is designed by someone who is disabled. For people who have got a mobility problem. It's not designed for someone who's unable to walk. You have to be able to get your foot over, lift your leg over from one side to the other. It's a three-wheeler, and the frame is basically triangular. With the apex at the front, the wide bit holding the seat. It's designed only for using in supermarkets going around the pavement it goes up hills. But it's designed for city and town use, right. But it's got a very powerful motor. So it's no problem going up the ramps onto trains. It's very light, it only weighs 17 kilos.
Phil Friend 13:52
That's not much actually,
Patrick Burke 13:54
um, it's very easy to fold up. And when it folds up, there is a natural bar to pick it up. Mm hmm. Um, so a label person or someone with good balance, can pick it up with one hand and put it in the car. it's just under a meter long. And when it's folded up, it's 40 centimetres wide, 40 centimetres high, a metre long. And when it's open, the steering unit is about a metre high. But you can adjust the height of that. And then the seat clips off and on. The only expensive thing is the battery that is about £600.
Phil Friend 14:42
Yeah, and it's the latest technology battery so it lasts a lot longer got more power and so on. How long does it take to charge fully charged then Patrick? What's the
Patrick Burke 14:53
I've never timed it but, um, five hours four-five hours, three hours. I really don't know.
Phil Friend 14:59
But um What sort of range do you get? I mean, I know that's hard to say because your stop, start around the shop stop, start uphill stop-start. Any thoughts on how long it lasts?
Patrick Burke 15:10
Um, if you go on a flat, non-stop, you should get about 10 miles out of it.
Phil Friend 15:17
Okay, that's that's pretty good. For a town based scooter. That's pretty good. But to do the Brecon Beacons, it's not?
Patrick Burke 15:25
No, no, you wouldn't do the Brecon Beacons on it. But the big advantage is, it's been designed by someone who is disabled for people who are disabled. So a lot of mobility scooters, if you want to have your, your walking, sticking, it's behind you somewhere. It's really difficult to get hold off. And also, there's nowhere to put your shopping. Yeah, your shopping has got to be in the shopping bag, behind your seat. Well, not useless. Quite frankly, you might just as well not have it, where it's a travel scoot. Um, there's a caddy. There's a caddy in the base that sits in the A-frame. So you can reach down and pick up you can put your shopping in there. Or you can put a coat in there. And you can pick it up and put it on. So it's accessible. So it's really been quite carefully designed. It's made from high-grade aluminium. So it's very tough and it's very light. Whereas a lot of these mobility scooters, they are demonstrated by an able-bodied person. Who can say, look how light this is and lift it up? I'm using both hands. Yes, if you're disabled, I can't lift something up with both hands because I fall over. Whereas I can lift the travel scoot up and put it in a car. If I'm holding on to something with my other hand because you can lift it up by the crossbar.
Phil Friend 17:03
Yeah. And what sort of price was that? I mean, I may have changed now. But what sort of money do you expect I for?
Patrick Burke 17:10
About £1800s. Without VAT? you can buy it from Germany. Um, and then you can get it repaired in any good bicycle shop.
Phil Friend 17:21
Right? So things like tires, and that sort of thing. Pretty easy to get as replacements, presumably,
Patrick Burke 17:29
Well, you would get them from travel scoot. Their spares aren't cheap. But, um, they last for a long time.
Phil Friend 17:36
Hmm. Well, that's fair enough, isn't it? Yeah. Okay. Well, there we are. So what we've got is we've got a very, very useful, very handy measuring jug, which is both light and the design of it wouldn't stand out in any way, shape, or form, but it works brilliantly for you. Then we've got this rather lovely fork, which is elegant, but also very useful. It's got some weight to it, it's very curved, so it feels very comfortable in the hand. And then we've slipped in the Rollator, which was a bonus offer from Patrick. Which is also but very interesting. A lot of people use rollators.
Patrick Burke 18:17
Phil Friend 18:18
And finally, we've got this rather elegant, very nicely designed, practical and lightweight scooter, which Patrick uses around town, and whenever he goes anywhere sort of urban, really, it's not supposed to be something you might use in the countryside, but very easily transportable.
Patrick Burke 18:35
But I've travelled to Australia with it. To America? Well, all over Europe, you can take on to aeroplanes.
Phil Friend 18:43
Does it go on as hand luggage? Or would it go on in the hold?
Patrick Burke 18:46
They take it off you at the aircraft gate? Yes. And put it in the hold and give it back to you. When you land at your destination? Yeah, you can then ride off into the horizon. So well. It's just it's ideal. It's fantastic.
Phil Friend 19:06
Well, it's it sounds like a very useful. And again, the theme that comes through your conversation is not only is it doing a good job of doing what it should be doing, but it looks nice doing it, which is the other side of this equation, isn't it? So Patrick, look, that's incredibly helpful. Thank you so much for spending a few minutes with us sharing your thoughts on this and I hope that's of some use to the people listening. I'm sure it will be I'm sure it will be. So thank you so much. It's been a pleasure meeting you and I wish you well scooting around measuring stuff and winding spaghetti.
Patrick Burke 19:50
Thank you very much. Thank you.
Phil Friend 19:52
If you've got some gadgets or things that you use to overcome the difficulties that your disability may cause, please let me know Maybe we can arrange for you to appear on the show. My email address is email@example.com or you can contact me via the Research Institute for Disabled Consumers at www.rdc.org.uk and thanks for listening