'Speedy' - Interview 19
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...
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...
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...
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....
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...
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...
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.
She started an online relationship with a man with PLS. But since she's been using a wheelchair...
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...
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.