Episode 20: Simone Illger

6 Oct 2021

Fitness and Comfort Matter.

Simone Illger was born with shortened arms and legs as a consequence of the drug Thalidomide.  She lives in Reading, Berkshire.  

After attending mainstream school, she worked for many years as a Secretary at Berkshire County Council and for Blue Circle Cement and later as an administrator for the Thalidomide Society.

Following the birth of her daughter in 1996 and spurred on by the lack of support for parents with disabilities, Simone helped to set up a national charity providing support to disabled people who were or who aspired to become parents.  She served as a Trustee for the charity for ten years.

Listen to Simone's podcast

Now retired, Simone exercises daily to help minimise pain, maintain fitness and improve emotional wellbeing.  She chronicles her ongoing journey of weight loss and shares her ideas for improving her mobility and fitness in her blog  www.flidfit.com.  

She serves in a number of voluntary roles including Chair of her local neighbourhood association, trustee and community journalist for Reading Voluntary Action and chair of the Reading Physical Disability and Sensory Needs Partnership Board (PDSN).

Past voluntary roles include serving on the Thalidomide Trust’s National Advisory Council where she co-chaired the Health and Wellbeing Committee and member of the Disability Living Allowance Advisory Board.  

Simone enjoys blogging, creating healthy meals, exercise, gardening, and travel.

Links to Simone's Gadgets 

If you would like to feature in one of Phil's future Gears, Gadgets and Gizmos podcast, you can email him here

Transcript

Phil Friend  0:17  
Hello everyone, it's Phil Friend here and welcome to the latest edition of Gear, Gadgets and Gizmos the show where we talk to disabled people about the things they use to overcome the barriers or difficulties that their disabilities throw at them. And today I'm delighted to welcome you to the studio. Well, it's not really a studio, is it listener? Simone Illger. Now Simone is going to tell us a bit about herself, so I don't need to introduce her she's going to do that herself. So you're very welcome. Simone, how are you?

Simone  0:48  
Hi, Phil. I'm fine. Thanks very much. Yes, I'm quite enjoying the COVID lockdown experience. If I'm honest, I think some of us disabled people find it a lot easier than going out and about trying to do our usual things. In some ways.

Phil Friend  1:02  
You're, I think you're absolutely right. I agree with you. I've found it to be a blessing in disguise in all sorts of ways. So I suppose the first thing we need to do, Simone is just to help the listener understand what the difficulties are that you face, and why you face them. So give us a little bit about your disability and stuff.

Simone  1:22  
So first of all, I think the main thing is that I'm getting old. I know that's not a disability, but definitely, I feel far more kind of affected by my age now and the aches and pains that afflict me so, I'm how old am I I see I can't even remember my age. That's the that's the thing. I'm in my fifites But my disability is that I work I'm impaired as a result of the thalidomide drug which my mom took when she was pregnant with me. And it affected me in my arms and in my legs. So my legs, my femurs or my thigh bones are shortened by about 20 centimetres. So I'm only four foot eight tall, but both my little sisters are about five foot nine tall. So I've definitely you know it's a good job. I've come from tall stock because I might even be shorter if if I hadn't. My hip joints, I hadn't really got hip joints and specialists are quite impressed at the fact I can walk at all because my femurs are just basically hinged on to the side of my pelvis and much higher up than they should be. So I haven't got a ball and socket joint, which means that everything that I do in terms of walking and moving using ligaments and muscles, but that, you know, I'd say my mobility is limited, and I find walking really hard work. It's like the same as anyone else going out for a jog. That's what walking is like for me. My arms are shortened to elbow length, and I've got three fingers on each hand. I don't know what it's like to have a thumb but they look very useful to me and I certainly know those things that I find difficult because I haven't got a thumb So turning doorknobs or you know, dexterity issues but because I've lived all my life with my impairment I think I'm fairly good you know, people could Oh, you're writing so good or all you know, be careful with that knife and I go Oh, don't you worry, I can't afford to chop off any more fingers. But the other thing that happened to me as I was in quite a bad car crash in 2002 head-on car crash driving on the wrong side of the road in France, which wasn't very clever and ended up with a broken ankle. And that didn't the healing wasn't straightforward and I ended up having my ankle fused so quite infuriatingly. My mobility was affected even further as a result of that fusion. And one of my ankles it just basically feels like I've got you know a not I wouldn't say fractured ankle, but you know, it feels as though I wrenched my ankle. And sometimes by the end of the day, it's big and fat and very painful. Yes.

Phil Friend  4:19  
So so the challenges you face then aside from the more recent one of the pain in your ankle and so on is reduced mobility and issues of manual dexterity using your three fingers to do what all of us would be using five fingers for and also religiously, because if you've got a short range, yeah, sure. All of a sudden, you've got very limited reach. So yes, you know,

Simone  4:47  
I love having tall people around me to do all my reaching.

Phil Friend  4:50  
As a wheelchair user, I kind of have sympathy with trying to get to things is difficult. Okay, so now you've you're an expert, I mean, you've been at this for forever. And I've spoken to you for a while now. And one of the things that comes off you is the kind of optimistic there is a solution to my problem type person, rather than somebody who's, you know, what's the point, you're not one of those.

Simone  5:14  
I like to, like, find ways around things. And you know, it's a bit of a challenge. I like a bit of a challenge. And I don't like to be defeated. So, you know, I will find a way around it. And there's only you know, a couple of times in my life where I thought, No, this isn't for me. I'm giving up now on one of those was waterskiing. And I don't think I'm missing out.

Phil Friend  5:36  
Not a, not an activity that we will do every day, as usual. Okay. So as you know, Simone, what we do on the show is we look at three things that people use. So which one do you want to start with?

Simone  5:49  
Well, why don't we start with the, you know, fairly everyday mundane thing, which is using leg warmers for gloves?

Phil Friend  5:59  
Now, what is the reason for this seems obvious, but why leg warmers for gloves? 

Simone  6:04  
Yeah, so you know, in the winter, we all get cold hands. And those of us who use a wheelchair, which I do for a lot of the time, when I'm out of the house, our hands get even colder as we're not even walking to build up heat. And my hands are strangely shaped, I've only got three fingers on each hand. So finding a glove to fit my hand is quite difficult. I usually go for mittens. And then the difficulty you've got is when you want to use your hands, it's getting those gloves off, and then getting them back on again. So I have to admit, this wasn't my own discovery, it was shown to me by a Swedish, thalidomider. And we were going around the city, I think it was Stockholm and my hands were freezing. And she said, Oh, let me lend you my gloves. And she got these leg warmers out of her bag. And I think they were like fluorescent green, they were quite bright. And you simply fold them in half, and then you push them over your hand and almost you know right up your wrist and into your sleeve. And when you want to keep your hand warm, you just pull the tube if you like the tube of the leg warmer down over your hands, and you're still able to use your hands to control your electric wheelchair. And when you want to do something like use your mobile phone or pay for some something in a shop, you simply push the leg warmer back up your arm into your sleeve and your hand is completely free. And the even better thing about this is that you know what, if you have your sleeve shortened as a thalidomider, you're left with no cuff often so the wind still whistles up into your arm and yeah, freezing cold, but the leg warmers kind of like a bit of a plug, you know or a cork so they like

Phil Friend  7:55  
I I just think this this is so brilliant. Why have we never I use a wheelchair like you do and I've got powered wheelchair so I have a joystick and in the winter if I wear gloves thick gloves it's more difficult to operate that you can't operate your camera on your phone if you've got thick gloves on this this is just brilliant. I'm gonna have to do this myself and then I've got proper fingers you know I don't have problems with gloves. 

Simone  8:22  
For me it's all on and off thing it's just something I can do. I can't you know some other things I might really struggle with and I definitely would not be able to put a glove on or take it off but I can take it off probably without help from another person and also they're replaceable if I got somebody to make me a pair of three fingered gloves and I lost one I probably would be devastated that I'd lost you know a glove word 30 pound or something whereas leg warmers you can buy really very cheap ones or you know if you if you want to you can go for expensive Kashmir ones I don't myself

Phil Friend  8:59  
and you could have you could have a range couldn't use Simone to go with your outfits. I mean, you could have multiple leg warmers to match stuff

Simone  9:10  
I'm not one of those people I just tend to go because they don't show the dirt and they go with everything So, right. But you know,

Phil Friend  9:17  
All right, no, no, no, I, I was being fanciful. Really. Okay, so Item number one is leg warmers used as gloves. Just so brilliant. I love it. Now what's number two.

Simone  9:29  
So number two, we're ramping it up a bit here and over the last nine years, I've lost a lot of weight, I lost about four stone and as part of that weight loss journey, I tried to increase the amount of activity I was getting and moving more, which you know, moving more equals burning calories equals being able to eat a bit more than you would if you were trying to lose weight. But because of my ankle injury Because of my, the whole way that I walk and my gait, I'm not very stable, I'm a bit, you know wobbly. Anything that's sort of weight bearing is impossible. I've tried using a regular treadmill, but I just end up with really bad pain in my lower back. And also, because my arms are short, I don't feel very safe. Like if I stumbled, I can't just grab hold of the handlebars on the side, I can't even reach the controls and change controls when I'm on a treadmill. So it's quite a terrifying experience. So you can tell from that I have tried the conventional treadmill. But this is something called an AlterG treadmill. And it's a gravity, it's an anti gravity treadmill. So straightaway, everyone's like, what's that, you know, and it's quite hard to describe. But it's basically a treadmill with a big air chamber built into it up to about waist level, and you put on a pair of rubber shorts with a zipper around the top. So these are quite tight fitting shorts, I think they're kind of like a wet suit type of material. And you use the the air chamber collapses down to ground level. So you don't have to climb up and into it, you can step in, it's still quite, you know, still quite difficult. It's not something I could do without help from another person, you step into the air chamber, you pull the chamber up around your waist, so it's the same level as the top of your shorts, and you zip yourself into the chamber. And then the fantastic thing about this machine is you can fill the air chamber up with air to take a percentage of your body weight, and you can make that percentage as large or as small as you want to. So typically for me, when I started using it, I was running at about 77% of my body weight. And as soon as that air goes into the machine, all my aches and pains in my hips and back just vanish, which is amazing. A bit like when you get into a swimming pool, I think,

Phil Friend  12:13  
Yeah. Swimming Pool. Very similar 

Simone  12:16  
When you get out of the pool, how heavy you feel, and how difficult it is to move. I started off just walking on this treadmill, and, you know, quite, quite gracefully just marching along. And then I sort of wrapped it up and started to do you know, walking, interspersed with running, and it's just an amazing feeling, because all of a sudden, I'm able to run, whereas, you know, without the without the treadmill, I can't run, I can't run I just can't run I can't run without pain without the risk of falling over. And you know, without looking stupid because I'd have to run in the street.

Phil Friend  13:00  
So how often do you use this? Do you use this every week every day?

Simone  13:03  
while I have to admit, I was using it about once a week or once a fortnight? and

Phil Friend  13:12  
How far would you expect to go so each session that you did,

Simone  13:17  
I use it for a half an hour. I can't actually remember how far I run but you know I'm running and walking for like three minute intervals during that time. The other thing to say about them is you won't find them in a regular gym. I found mine a local circle hospital, which is a private hospital. And they've got a really good rehabilitation center. And they do a lot of work around pain and sports injuries and rehabilitating people that are either injured or have been operated on. And I've seen one of these at a show I went to with one of your past guests actually Sue Kent and I had to have a go on it at the show. I just took off my shoes so I ran in in it with bare feet. And I was like this is wonderful. As I was running along and all these various occupational therapists, gathered and they were all asking me questions like, what does it feel like and I was going well, it's great. I was doing a really good advert for them. I said to them I'm not going to get off. I think that the people that owned the treadmill were like a bit worried that you know, I wasn't going to get off but I did eventually. And then I thought I just want to I want to use one of these and the AlterG website gives details of where you can use these machines around the country. And a physiotherapist I visit locally made me aware that there was one at the circle clinic which is literally probably a 10 minute drive from my home.

Phil Friend  14:53  
So I was right so you don't have it yourself. You go and use one at a local gym.

Simone  14:57  
I think they are really really expensive things And not only that you've got to have it specially wired into your house, you wouldn't be able to have it. Right, they take up a lot of space as well. But when I was using it, the price may well have changed now I was getting 10 sessions, 10x30 minute sessions for 135 pound, which sounds really expensive, but that is 13 pound 50 per session. And I think the thing I really liked about it was I was able to put my legs through a greater range then I could just walking or moving about normally. And definitely it was benefiting me in terms of my walking ability and just moving and stamina, you know, being able to do things walk for longer. And yeah,

Phil Friend  15:50  
I mean, what's what's fascinating. I mean, if for no other reason than pain relief, just getting in it for half an hour to feel no pain, or at least hte pain going off? would be worth it, wouldn't it? If, if because you're absolutely right about swimming. I mean, I don't swim now, but I certainly used to, and the minute you got in the pool, you're a different person, you know, it was a, it was a totally different experience. Okay, so what we need will obviously put links up for our listeners to do their own research around this. This sounds fabulous. So what's the third thing then Simone, the third gadget or thing that you use

Simone  16:28  
The third thing was a fairly recent discovery. And, you know, I'm sure that a lot of us, not just disabled people have found ourselves sat in front of our computers far more, during the COVID restrictions doing zoom call after zoom call. And the office chair that I sit in front of my computer was one that I bought secondhand, it looks look perfectly nice, it didn't have any holes in it, you know, on casters. And one day, somebody walked into the office and said, that chair really looks, it doesn't look comfortable for you at all. And so for the first time ever, I sort of looked at this chair, and I thought actually, you know really isn't comfortable. It's a big, heavy chair, it's got hardly any padding on the seat. You know, I wonder if they make bespoke office chairs to suit people like myself who were a bit of an odd shape. So I went online and did a bit of research. And I discovered that this thing did exist. So I went to a company called online ergonomics and they don't just do seating, they do things like desks that move up and down and footrests and stands for your laptop, etc. But they make various bespoke office chairs. And you basically take several measurements yourself, and it's quite a lot of them. So it's like, you know, knee to floor and shoulder tip the shoulder tip and length of back and width of hips. And you can choose your colour, you can you know, I think I've chosen a memory foam seat pad. And after several weeks, this chair turned up, and I'd chosen the same color as the office chair I had already which was a nice bright blue. And when it was unpackaged, I looked at it, I thought, oh my god that looks tiny. It's tiny. It was tiny, you know, the, the width of the seat was half. But I didn't need all this extra. For me, I'm not a huge person anymore. I was once and for the first time in my life, I'm able to sit at the computer and have my back supported. Whereas normally I'd be sat on the edge of a chair, which isn't the part that's designed to take the majority of your weight anyway. And I could never lean back into the chair and be comfortable. I couldn't pull my chair right up to one side because my desk is curved. So I've got my mouse on one side. You know, the chair stops me from getting my previous chair stop me from getting as close to my mouse as I'd have liked. This is just, I've just been quite shocked at how what a difference that's made to how comfortable my seat is in front of a computer.

Phil Friend  16:30  
This is a really, really fascinating and important issue, isn't it because if you go into most offices, and you look at the chairs, there'll be six foot John's sat on one of them and there'll be five foot three, Anna sitting on another one. And they're exactly the same chairs. These two are hugely different in size and so on. So the idea of having a chair designed specifically with a disability in mind that makes it even more important. Have you found as a result of this, that you're able to work longer, you have less pain, discomfort, that kind of thing, because I'm guessing you're doing all sorts of things. different movements to to maximize the limits you've got. So if you've got foreshortened arms, you're leaning forward a lot more that kind of thing. Have you noticed it's really helped you?

Simone  19:22  
It's really helped me, but I am not. I try not to sit for hours on end in front of the computer, I try to sort of mix up what I'm doing with moving out and doing a bit of lunch prep, or a bit of dinner prep, or, you know, walk around the garden or a cup of coffee, because just the act of getting out of my seat and taking a few steps I know really does help me with pain. So yeah, yeah, no, definitely has helped with pain. I mean, mainly that just having the cushioning under my derriere, as you know, yes. Feels like it feels like a luxury seat instead of you know, really, I could have sat on a wooden crate before. That's how uncomfortable it was. But without me realizing it, it was just you know, it was doing the job.

Phil Friend  20:54  
It's so obvious, but we don't think of it do he is ergonomically designed chairs makes so much sense.

Simone  21:01  
I'll just add that they also make the company also make office chairs that can be electrically controlled. So if you were an electric wheelchair user, you could, in effect, you know, joy stick controlled. office chair. for use just in the office? Yes. could if you wanted to have a break from your wheelchair.

Phil Friend  21:22  
So just get in your wheelchair when you go out? For example. Yeah, that that makes perfect sense. I'm guessing that this wasn't cheap. 

Simone  21:30  
No it wasn't cheap. I paid about 689 pounds, which is a lot. But office chairs,

Phil Friend  21:38  
I'd sounded less than I thought you were going to tell me

Simone  21:41  
office chairs, you know, generally, if you buy a decent one they can they can be that price. And this one was, you know, made for me.

Phil Friend  21:49  
Yeah. Now I I suspect that for some of our listeners, particularly those working, this might be something they could look at under access to work or something, if they needed a grant to help them pay for it,

Simone  22:02  
I don't see why not. It is a lot of money. But if I if I even that out over the next, however long, it's gonna last maybe 10 years, you know, it really is a small price to pay for comfort.

Phil Friend  22:14  
Well, and you're using it every single day, you know, it's when you put it like that it's not expensive at all. But I think if you're employed, then you might ask your employer to provide it because after all, you'll you know, and now we do started the conversation mentioning COVID, you know, many of us are doing much more work from home than we ever did before. Well, that's really helpful. What we'll do, Simone is we'll, you're very kindly agreed to let me have the links to these various products. So will will, I mean, the good old leg worn warmer, I think we just go on Amazon and have a good old look. But the other links we'll put up. All that remains for me to do really is to say, that's been brilliant. So thank you so much for sharing those with us, and also giving up your time. And we wish you well,

Simone  23:00  
Just before you go, I can be a bit cheeky and just say, um, I've also got a blog that I write around weight loss and activity, you might want to include that I just think there's a lot of disabled people that really struggle when it comes to finding activities that are suitable, and you know, almost give up before they've started. So I'd like to hope that my blog offers them a little insight into my life and, you know, make people recognize that changes in lifestyle can really make a difference in many ways.

Phil Friend  23:31  
Yeah, well, you know, thinking about your chair, for example, and the machine that you use at the gym. If we weigh less than that gets even easier to use. Okay, we will post your blog details. And that's a great thing to do. I think we'll put your details up on the website so that people can look at your blog and read that too. Thank you so much, Simone for your time, it's been a joy and a pleasure meeting you and thank you very much indeed.

Simone  24:00  
Nice to meet you too. Bye.

Phil Friend  24:03  
So there you are, just before I go, if you'd be interested in coming on the show, because you're using gadgets in a way which might be of interest to other people, please let me know you can contact me at brinkburn@gmail.com or you can contact RIDC directly and they'll put you in touch with me. Thank you very much again for listening.

Transcribed by https://otter.ai