'Speedy' - Interview 19

Age at interview: 53
Age at diagnosis: 51
Brief Outline: 'Speedy' was diagnosed with primary lateral sclerosis (PLS) nearly 2 years ago (in 2005) after 2 years of increasing leg weakness. She now uses a wheelchair and a hand-operated car.
Background: 'Speedy' is a full-time mother, single with 1 son aged 13. Ethnic background/nationality' White British.

More about me...

'Speedy' was a keen competitive runner, and first noticed symptoms during a race just over three years ago, when her foot started dropping. Her GP referred her to a neurologist, but at first tests were inconclusive. Within a year, she had to give up racing, and when she took up walking with the Ramblers she found even walking was becoming difficult. At her next appointment the neurologist was still not able to give a definite diagnosis, but ruled out multiple sclerosis. With hindsight she believes he suspected it was MND but did not tell her. She would have liked someone to tell her earlier it was a possibility, and wishes someone had advised her to make the most of her time while she was still mobile. 

She asked for a second opinion, but then got a message saying the new consultant would not see her after all. She found a private neurologist through the Yellow Pages, who diagnosed MND. She was upset by the way she was told; the neurologist asked her to guess what condition it was and then he would tell her whether she had guessed correctly. She guessed Parkinson's first, then MND, and he said that was probably right, although he wanted to do one more test. She had a terrible time over Christmas wondering how to tell her 13-year-old son. 

When she went for the final test the technician said he did not believe it was MND after all, and for a while she believed him. However, when she went back to her original NHS consultant he agreed with the private consultant, and thought it was probably the primary lateral sclerosis form (PLS). This has since been confirmed by a specialist MND consultant. 

For 'Speedy', the loss of sport has been a huge blow, as it was her main interest and the core of her social life. She was upset by one friend she used to meet regularly at the gym, and another friend who accompanied her on visits to the consultant, but who both now will not speak to her. She often feels lonely and isolated, and frustrated by the increasing loss of mobility. She now uses a wheelchair a lot of the time, although she prefers to sit in a normal chair if possible. For her the wheelchair means she is 'no longer in the land of the vertical, which is a big difference to the land of the sitting.' She has a hand-operated car so she can still drive independently. She has made herself take up other interests, including learning the piano, knitting and embroidery, even though they would not normally be her choice. She gets very tired, and sometimes very tearful and afraid to think of the future, even though she feels lucky that PLS is not terminal. 

It has also been a great sadness no longer being able to do things with her son, such as walking round town together, taking him to see friends, or going on holiday. He finds it hard to talk about his mother's condition, but helps around the house with certain tasks. So far 'Speedy' has not relied on anyone else for her personal care, and does not want to think about having a carer. She has recently decided to get more involved in activities organised by the local MND Association.


For months she had no idea it might be MND. In a way 'blissful ignorance' was good, but she...

So in the January, I saw the consultant again, and he still said, 'Could be something or nothing, I don't know. Let's see which way it goes.' I said, 'Oh, OK.' He never mentioned motor neurone, and although I was extensively on the web, and I have got a slightly medical background, my father and stuff, and I do seem to know slightly more about it than a lot of people, somehow or other I missed the connection between the dropped foot and motor neurone, because if I had Googled 'dropped foot' and 'motor neurone' I'm afraid it probably would have said one of the first symptoms. For some reason I missed it, so I never thought about motor neurone. I thought the first symptom of motor neurone - how I could glean this - was something to do with the throat. But I got that wrong. In fact it's often the foot. But, OK, I missed it. So I was in sort of blissful ignorance, and being as by the January I still wasn't much worse, I wasn't that worried. I was a bit, obviously a bit anxious that this, we were now stopping running. I was still going to the gym, I was still doing the swimming, but I, you know, I was still, anxiety was starting to creep in here because we didn't know what it was six months down the road.

But I wasn't too bad. I mean, I could go on norm-, fairly normally, walking. And then January, February, March - in the May the running was all over. And I decided I'd take up walking instead, perhaps join the Ramblers or something. So I joined the Ramblers, and I had two fairly disastrous walks in the May. They were too long, I wasn't up to it. They were both of 10k, and one of them I remember was in the May and it was 10k. Hmm. I got half way round and I was swaying, my balance was going, you see. My balance was going. And I couldn't keep straight. And I still had no stick at this time, and the foot was still a bit funny, and I was like swaying. The balance was, was going. My balance was just not right. I could fall over quite easily for, to the sides, you know?

June, I was due back at neurology, so I didn't worry because my appointment was booked. And I walked in and I said, 'Well I've just been on two walks, you know, 10k, and it's not looking good.' He said, 'Well, you know,' I think he said something like, 'Well that was quite a distance, anyway.' I said, 'OK, all right.' He said 'I don't, I don't know what it is. You were clear on the, clear on the MS. Don't think it's that, you know, because, because' - then he said, 'because MS tends to have a sensory factor, and I'm sticking needles in you and you know where they are. So I think we'll, you know, rule that one out.' I said, 'Well what else could it be?' He said, 'I don't know,' he said, 'could go either way, I don't know.'

He never mentioned motor neurone. In one way, I'm really glad, because I was in blissful ignorance. In another way, I wish he'd said, 'It could go either way - for God's sake start enjoying your life, because if it does go one way, you know, if there's something you want, somewhere you wanted to go, some' - you know, like that. I, I wish he'd said something like, 'Go for it. It could be nothing, but if you've got the burning and you wanted to go on holiday and there's somewhere you wanted to go, go now.' But he didn't. I wish they'd said that, something like that, and just to - you know. Anyway we were, so now we were a year down the road and we still haven't got a diagnosis.


She didn't tell her son (now 13) the name of the condition at first but explained she might need...

Yeah. Well, I didn't know what to do. How long, when was I going to explain all this. He could see the downhill. So at some point, 'yeah, at some point I, I came - I think in fact, I don't think it was till the diagnosis - I came clean and I said, 'Look, the fact is I've got something, and the name won't mean anything to you anyway, so we'll not go there, but I could end up in a wheelchair.' 

And he'd go, 'Noooo, can't talk about that.' Or he'd put his hand up and go, 'Oh no, we're not going there again.' Or I'd cry - and I tried not to cry too many times in front of him, but obviously it's happened about half a dozen times, and who could help it? I'd cry a bit and he'd, and he'd say, 'Ooof.' So, he didn't want to know. So, when I cried a few times more I said, to him, 'I know this is a difficult for you when I'm crying,' I said, 'but if you could just, if you could just say something like, you know, 'I know it's hard for you, mum', and leave it at that, then I know you've heard it.' So he [laughs], next time I cried he goes, 'I know it's hard for you, mum.' I said, 'Oh, well, that's nice of you.' And so we were having this silly false conversation now. But anyway, I said, 'Oh that's nice of you, you know, there we go.' And I, anyway I had to keep saying, 'I'll end up in a wheelchair,' because I thought it best to keep saying, because he kept going, 'No, whatever.' So I, I'd leave it a little while and then I'd say it again. 'I could.' He went, 'OK, I've heard you. I've heard you. OK.' I said, 'Fine, well, now you know.' And then it's only recently that I gave him the name, because I said to him, 'Do you know the name of it?' And he went, 'No,' he said, 'but I have heard you say.' And I said, 'Ahh, well, it's this', I said, 'But it's very, very rare.' And as you can see, I've hit the wheelchair. 

How's he responded to that?

Mixed. He was in denial about it for quite a long time, particularly when the chair wasn't out. He seemed to think I could do things that I couldn't do. And then gradually he realised that there was a load of stuff I wasn't doing anymore, so he wouldn't ask. I had to take people on holiday with us, I wouldn't be doing town anymore. Well, I manage town with the scooter but he's had to accept that it's, it's, you know, that I'm no longer his plaything. Which I certainly was before, because that's the way we went on. I'd fill in lots of gaps - no friends around or something like that, I was there. On holidays, I could fill a day for him, drop of a hat. Because I wanted to, because that's what we did. You know, I've been like a best friend to him really. More. And so I miss all that more than he does and I have to say to him, 'Oh, you know, I would have liked to have, I'm sorry I can't.' And he goes, 'I don't mind.' I go, 'But I mind.' 

She had foot drop and aching leg muscles at first. Later, she began having balance problems and...

Yeah. Yeah, well the foot was the first symptom. The balance, do you want to know when - the balance didn't click in, as I say, for six months-ish. That started to go. I think it's because the muscles going across are weakening. So you've like nothing saving you at the sides. It's hard to know, isn't it? You think it's your ear sort of thing, but it's not, it's the muscles, you're just not as stable. So the balance was, was starting to go, but that's not for six months. 

You talked about the aching a bit.

Oh yeah, well, yes, that lasted a short while, that aching business lasted just a sort of short while, the aching. It lasted six months after the start but it went on for maybe two months, and then it seemed to go away. It was an ache. All the aches, it was all aching at the top, and at the bottom. Mostly at the top. So I used to spray it with, you know, this Ralgex stuff, as if this was really going to make much difference really, but it was aching. It was aching because the legs were feeling, were tight. And it was more a spasticity, what you call a spasticity thing, which actually I've not had that much of. So they were tight.

But the other symptom I - oh the other symptom I had, that's right - and this happened quite early on - it would feel as if you were incredibly nervous. It would feel like you'd got a bad case of butterflies in the stomach. And it would feel exactly like that. You know, exactly like you were very, very nervous about something, worried. Because your body would go brr brr [shivering noise] - like that, buzz. Buzz with a, almost, it'd almost shake, it would go, you could feel it going bzzz, bzzz, inside, all over. And, and the legs would actually move, you know, they'd go, sort of move a little bit as well. Or, if you'd got your foot in a certain place on the floor - and that still happens now, again not so much - as with the accelerator, or the brake, it would go pop-pop-pop-pop-pop-pop-pop, my whole leg would move. Your foot would remain on the accelerator - so you could say you were still in control of the car - it would remain on the brake, but the rest of it was in absolute movement. Going brrr, nineteen to the dozen.


She advises others to hold out as long possible before moving onto the next piece of equipment....

I think another bit of advice to people might be, you know, don't - you get all these aids and they drop all these things off, you know - for damn sight do your best to battle with the one you've got. And then give in. I know it's giving in, but there'll be, come a point you'll have to move on to the next one, and we know the next, the last one's that. You know, battle on best you can, and do what you can with each one. I went miles in that three-wheel frame, even though it hurt. Because I'm mad. But I was determined. I was in agony at the end. But I just wanted to see it out and hoped it was my last one.

You know, so do what you can. But it's a huge jolt when you go to the chair, and by then your friends have lost interest anyway. People say, 'Well, you know, [pah] you're on a frame, well, you know, it looks like you're going to -' They don't realise that that's the biggie. The frames are, you're still vertical. You're still in the land of the vertical, which is a big difference to the land of the sitting. And I don't think professions or anybody fully, they don't seem to, don't seem to fully appreciate the, the problem. They say, 'Oh you've got your freedom now.' You know, 'A chair, you can whizz'' Yeah, freedom, yeah, but there are a whole load of other things I can't do now, that I could do when I was on the, my frame.

Mmm. Yes, even if it's just getting through doors and things, and.

And now I'm all scrunched up.

Yes, and steps, and yeah.

And, you know, I'm getting all urggh. But they'll say, I don't think, - you know, all that counselling, probably too soon, I should be having counselling now. She kept saying, 'Oh, you might not go into the chair. You might not go into the chair.' Yeah, but, you know, 'I don't know. Feels like I will.' There's, because once you're on that downhill slope there's no brake goes on, there's no remission with this one. Some people do stabilise, I, I appreciate, but mine just continues to go downhill. My next worry now is that, 'Oh, I'm going to struggle to get out of bed now.' I think, 'How am I supposed to do this? Oh, I see, you've you know, I'm struggling because my column muscles have all gone, so I can hardly get out of bed. Can hardly get off the chair.'

My next step is, 'Oh, I'm supposed to have a hoist, am I?' The OT said to me, 'Oh you'd better think about getting a bathroom with a roll-in shower.' Those things are bloody enormous. Those things are like, you know, my dignity's well out the window. If I think this is bad, what am I going to think when I'm being hoisted up and I'm supposed to face the day in a, I'm put in the chair for the day? Oh my God. At least I can still get out of it. Or I can go to a restaurant and I can still get out of it. And I'd, that way I'd advise people while they can, do it. Even, you know, I, I still get out if I can. I still look on it as some transport and I refuse to sit in it all day, because it makes you feel ill, actually. It's not comfortable.


As someone with PLS, she felt meeting people with more rapidly progressing forms of MND would be...

I was slightly in touch with the MND Society, but I chose not to pursue it too much, because I was concerned that I was different and I didn't want to associate, associate with those that were terminal. I thought it would upset me. The neurologist indicated the same. I've kept it brief with them. But more recently I've had, I did phone up one day and an area organiser came out that same day. And I've since had a, I've had a phone call in the last fortnight to say they've changed area organiser and would I like to see the new one? And I have responded to say yes.

And have they given you any practical'

No, she came out, she was quite firm. Quite a tough cookie. And you know, was not going to do the sympathy vote on that day. She was quite tough.

How did you feel about that?

I think I needed it that day. She was more or less saying, 'Come on, you've got PLS, not the other one. You're damn lucky. Come on, you know, get over it a little bit.'

Do you think you might change your mind about that when'

I have changed my mind.


Because they've since contacted me with a small event, which was in September. I couldn't do it because I was doing something. They then said would I like to do the next event, which was not even sent with the thing on, but I've got a number, and it's in November and it's a sort of pampering day thing. And I've said I'll go. So I have moved on. I know there'll be the MND there, but I've said I'll go. So I've moved on. No I won't, do not want to Go and sit at the day centre at the hospital that I happened to peek in through the window, people in chairs all round, you know, tables and stuff, and no way will I go there, because they looked pretty rough, some of them. But an odd day yeah, I'll do that.


She thinks she's emotionally quite tough, but every few days she has to cry. It's a combination...

I've got an emotional toughness. I don't know where it comes from but I have, I think. To some extent. On the other hand I'm incredibly needy. So maybe that doesn't match up. I just want somebody to satisfy those, that neediness every day. and I've got nowhere to go. And that felt awful, awful, awful, and yet almost empowering. I thought, 'Oh God, you've got to do this all on your own. And I think you're going to as well.' So the tears flow. I can turn them off, now, for about maybe a four-day period. That doesn't do me any favours, turning them off for four days, because it's a terrible, terrible mess on the fifth. I can, you know, I can try to do a little bit each day, or I can save it up. But I save it up, because I think, 'Well, you've got to day three here, [own name], you're fighting it off quite well. See if you can just get another, get to another day.' And I last, I last about four, five days now. 

And then you just have to cry?

Oh, I'm in bits. Because I can't get out, I'm largely in bits because I'm - one of the reasons I'm bits, I cannot leave the house, because I can't get the wheelchair in the car until this business is sorted with the car. I've got great difficulty leaving, and I haven't got anywhere to go much. So in some respects I've got a harder bit, because I haven't got a partner. Even the wrong partner would be better than a, no partner, in many ways. Because I think they would say, 'We've got to carry on. If only for your son, you've got to be seen to be doing something.' 

Has, has your GP ever talked to you about the emotional side and whether there's anything they can do?

Well, I, no, no. I understood that people with MND have outbursts, crying. I don't think mine is that. I think mine's just common or garden, 'Bloody hell, I'm fed up again. This is terrible.' Fear overcomes me. And I feel absolutely petrified of the future. And I just feel, 'Oh, my God,' and so lonely. And particularly at the weekend, because my son goes off on a Saturday - maybe I should have asked for him to stay - but he goes off at half past seven on a Saturday, doesn't come back until four o'clock Sunday. Saturday afternoon I've got nothing to do, I can't leave the house. Saturday night, blank. Because I've hardly got any friends. I've got one or two I've roped in. I'm going spare. Plus I've got to prepare a meal myself, my arms are killing me by Saturday night, because I've gone into that kitchen so many times for so many drinks I can hardly do it. I can hardly get there. I've got terrible fatigue and yet I've got to get a meal now. I think, 'Ohh, I can't.' 

And then last Saturday, that door wouldn't shut - you know, it's a tiny thing - it wouldn't shut. And my face, it just went into a thousand wrinkles. I went - I can't describe the movement because I'd no idea where it comes from. I screw my face up and I scream. I would love to see a video of that. It must look horrendous. I do some horrendous movements that I - almost primeval - that I, I remember doing one like that once in a middle of a nightmare about 10 years ago, and there was a sound that came from, well the person I was with said it was amazing, it was from, total primeval, it was just - where was it from? I said it was from the bowels of I don't know where. I remember doing it in this nightmare, but now it almost is in the daytime ones, and I go MMMMM, like this, pushing out with my face and I go [blowing out] like this, and I scream blue murder 'at the sheer frustration of it all.


Tiredness is like a veil coming down. She gets so exhausted if she tries to do more than one thing a day that she feels physically uncomfortable.

Oh, the fatigue is, you go a level - well, part of it is using muscles that don't want to do it, do anything, because obviously I've got, you know, you get that. But part of it I think is some kind of neurological thing. Say I, I go out, a simple thing, you know, a lunch or something with a friend, or something like that, I can do that, and then like a block, a sort of veil comes down, and I can't take any more in, and I can't do anything. I would come back here and I'd turn off the telly and I'd turn off the radio and I would try and sleep. Because the body won't absorb any more, and that's why you can only do one thing a day. You're here today, that will be all that'll happen today, pretty much. And it could mean by tonight that I'm desperately, almost, almost uncomfortable, but still sitting here. Not quite, but nearly at a point of, whew, you know, like - I think even last night I was doing something, I went into town in the day, that's right, and I was sitting here at one point last night and I thought, 'Whew, I don't know. Am I going to just be able to just continue watching the television, or is it just going to just be like a, a thing that's just too much?' And I sit here and I think, 'Oh please, please just, just let me leave, just let me finish this programme before it feels like I can't take any more.' Or I'm frightened that [son] might say something to me and I might - not that I have, because I never do with him - but that I might snap or something. Oh, and I think, 'Well, thank the Lord [son's] not a demanding child', because he isn't. And I think, 'Well, thank God, he's not four years younger', because, you know, he'd be, he, you know, he'd be wanting something.
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She started an online relationship with a man with PLS. But since she's been using a wheelchair...

There is a website of support for PLSs, I don't know if you know? Well, it's American largely. They're mostly American. I found it. I went on it. There's hardly any English on it, because I said, 'Anyone English?' Didn't get any response. Mostly American, see masses of them over there. And within days of going on an American gentleman wrote to me. He was my age, single, got one child. So that was largely very similar to me. And we started writing almost daily. Beautiful writing, obviously he's artistic. But he's five years down the road. And we started writing on and on, you know, about things. Terribly positive gentleman, absolutely unbelievable - looking back I think hugely in denial but, you know, God bless him. My God, was he positive. He always said - and this is I suppose a piece of advice for anyone else - he always said, 'Do what you can, with whatever you're left with, but make a meal of it.' It was a good piece of advice, it was nice' I know that he meant eating was one of them because there'd be huge descriptions about a pork chop'.He's a visual person. I'm not. I'm not at all. I'm talk, I'm not visual. But, you know, he'd be describing a bush outside his window for two sentences. It would never occur to me to do that in a month of Sundays. And photographs of his garden, you know, because he grew beautiful lilies. Beautiful gentleman and it was all going well and all lovey-dovey starting up, you know, just a joke, and then it kind of went - I don't know - it started to go off a bit. And he was due over and he didn't visit when he came. And I was peed off about that one. He reckoned it was all down to whoever was organising the holiday. He didn't visit. Right, OK, he didn't visit. 

But then I went into the chair, and I don't think he's got on so well with that. He couldn't bear, I don't think he could stand this constant letter which was all about the chair. Now I'd got nothing else to talk about but the chair. And he's not gone into the chair. And he's left it now about - well, he hasn't written for about four weeks. Because that doesn't feed his denial, does it, that I've gone into the chair? All I can say is he's five years down the road and he can still manage two sticks on occasions. So he's a damn sight better off than me. He must be marvellously better off than me. He's still on the frame. Five years and he's still on a frame. Been on a frame for two years. I got, what, four months?


She has taken up piano, knitting and embroidery. They're not things she'd ever have wanted to do...

You've got to find something else' whatever it is. I mean I, [cough] I think this craft work and stuff, I don't really, I don't really like it very much but - to be honest - but never mind, you've got to find something else to do. Bearing in mind you've got huge fatigue, so it's not got to be a long session. You've got to find something else to do, urgently. That would be, that would be a piece of advice. And whatever it is, you know, you've got to make the damn best of it. And if it's not quite your cup of tea, so what? It's something. You've got to. I mean, I've taken up the piano. I'm not good on the piano, I'm not a musical person, but I still do it because for that hour I'm thinking about that piano. And the hope is, you know, I might get a little better. I might get slightly better. I'm not great, because it's not within me. Or the knitting, you know, I manage to knit something, and now I have to go to embroidery every Thursday, which is dead boring. But, yet, if you can still eat, you know, there's meals and everything. So my advice would be, that's one thing. My advice would be, if you haven't got a partner, I think, you must try to scoop up, scoop people up and get company in. Even if you don't like them very much. Or whatever, you must try to get them in, because people are distracting. And, you know, whoever they are, they've got something to say. And if meals are something you can still do, if you haven't got the throat thing, yeah, stick around with it. You know, and my, that would be the two bits of advice.

And the other advice, well, I've got other bits of advice - the advice was, the chair is shit. Anybody will tell you that, but if it gets you to that restaurant and you can still eat, that's something. It's better than not going to that restaurant. Because you are out the door and you can see something and, and if you can drive, however it is, yeah, go for it. Even if it's only one mile. So I'd say all those things.


For a long time she managed to be 'happily in denial' but then reality set in and her whole life...

Well the impact on me is' huge. For a long time, even when I was on a three-wheel frame, I was in denial and I was happily in denial. Because as far as I was concerned it wasn't really happening. I might be on a frame, but it was only a frame. I could still do, go into town with my frame and do short bits and whatever. So I was like happily in denial. And denial's got an up-side, you know? 'It isn't happening. So therefore I can still, you know, go into town, have a drink.' It had an up-side, the denial, and that went on for a long time, before it came crashing down, and the reality came in. And the impact on me was like, 'Well, I should be able to put the 'dis' [disability] to one side and I should still be me,' you know. ''Dis' is only going to be one part - you've still got your personality, you know.' But I was struggling with that one. I knew that that might be a way of thinking but could I think it? No. 'Dis' was everything. It took over. It was 24/7. I couldn't put it away. When I got up in the morning and I went on that trolley, I couldn't put the trolley away. And I couldn't leave it, you know, I just couldn't, I had to live with it 24/7. My whole life was occupied with 'Dis' - it was like a full time job managing 'dis'. Managed the appointments, managed the car, you know, and all the hassle with the car. That was the block I could have really done without.

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