Kim - Interview 10
More about me...
Kim first noticed symptoms about a year before she was interviewed, particularly weakness in her right foot. She works as an occupational therapist and some of her clients had Motor Neurone Disease, so she knew quite a lot about the condition already. Although she did not fit the typical age group for the onset of MND, she began to suspect her own symptoms were similar to theirs. She went to her doctor, who referred her immediately to a neurologist. After two weeks in hospital, she was diagnosed with probable MND (ALS). This was within 3 months after first noticing her symptoms, in 2005.
Since then, her speech has remained unaffected, but her muscle weakness has slowly worsened, and she can now barely walk. She needs help with most daily tasks such as dressing, washing, using the toilet and eating. The MND Association has provided support and equipment, and she has a home carer coming in. Kim feels having outside help is important so that family members do not end up having to do all the care themselves. She takes riluzole, and has recently started taking antidepressants, which have helped reduce her mood swings and tearfulness.
As soon as she was diagnosed, she spoke to her employers and wanted everyone at work to know the situation. She continues to work part-time, and has special adaptations to her car so she can still drive. Her work colleagues have been hugely supportive, using humour as well as practical and emotional support.
At first Kim did not want to tell her children, in case they looked on the internet and were frightened by information about the condition. But then to raise money she offered her story for sale on e-bay, and at that point had to explain to her children that she had MND and was going to get steadily worse. Her 12-year-old son still gets quite upset, and she feels it is hard on both her children that they now do things for her instead of her doing things for them, but she tries as far as possible to act normally with them and be honest if they ask questions.
She has found it very helpful to use the BUILD e-mail forum for people with MND, although at the moment she is not using it, as she was starting to feel her identity was becoming too centred around MND. She believes it is important not to worry too much about the future, and to just accept each new challenge as it arises and deal with it.
As an OT she suspected she might have MND. She describes the diagnostic tests, including an EMG,...
Can you tell me how you felt when they told that?
Well, I did have an inkling but you never want to think it is that. And I'd already told the consultant in the hospital when I was in to have my tests that I thought I had MND. And when he came around unfortunately he confirmed it was. And that's still very emotional for me now. It's very, very hard. It's hard for the family and hard for you.
Perhaps you can tell me a bit about the tests that you had and what they were like?
Right. First of all I had bloods done which is the normal course for everything that they test you for. And then I had an MRI scan. I mean it was a full body MRI scan sort of for my brain and for my spine to see if they could see anything on there. From there on then I had what they call an EMG which was testing my muscles and how quickly the nerve pathways would go, reaching my muscles and also if there was any muscle loss. And I had a lumbar, a lumbar X-ray as well, spinal X-ray and it was really the EMG that was quite conclusive because there was signs of muscle wastage and slowness in the nerve pathways. I also had a lumbar puncture and again the sort of that all concluded, all the tests, that I did have those it was most probably MND then.
And the time it took to took, to have those tests?
Right. I was advised by my consultant to go in as an inpatient and be admitted because it would be far quicker to be seen than if I waited as an outpatient because I'd have to go on a long waiting list. So basically I just went into hospital and whenever they had a gap to squeeze me in they squeezed me in. So I was in hospital for about roughly two weeks and I was diagnosed at the end of that time as well.
She would have liked physiotherapy as soon as she was diagnosed, to stop her leg muscles getting...
I have. I'm a bit angry really I wasn't referred to a physiotherapist as soon as I was diagnosed. Because it was only a fellow colleague of mine who was a physiotherapist that said why haven't I been referred and I should be seen. And by that time my muscles were very tight and my tendons were very shortened. And with physio and exercises that could have been stopped or slowed down.
The problem with physiotherapy is people sort of, who've been diagnosed with illnesses such as mine graft onto it thinking it's going to actually slow the progression down or help them to, you know, stop the illness but of course it doesn't. All you're doing is stopping secondary problems from happening. But my family do my physio with me at least every other day and if they can manage it they do it every other day, every day. And as I say it stops all the contractions or stops the pain. So yes I find physio invaluable but I wish I'd been diagnosed, referred earlier.
Right from the point of diagnosis. When was it you actually got?
I started receiving physio about April time, so about seven months after diagnosis and because of the way I walked it had shortened the tendons and all my calf muscles were very tight. And also my feet were very swollen with blood blisters on them. But through physio my feet are now the normal size and I don't get the blood blisters and they're the normal colour again.
She suspected it was MND and wanted the doctor to tell her straight. For a few days she couldn't...
The way that he told you or she told you was that the best way they could have told you?
It was appropriate. I think he was a very good doctor because I think he reads into you and he, because he sees you for the two weeks you're in hospital. I think he can pick up on how he thinks is the best way to word it to you. And I saw a lady who was on the ward with me and she's been to her, tested for MS and I could see that over the days they'd already diagnosed MS but they were just drip-feeding the idea to her every day. So I did actually say to my consultant that, you know, 'I know, I think I've got MND. Please don't drip-feed it to me. Just tell me straight.' And that's what he did, very gently but he was no, none of the drip-feeding that I saw the other lady having done. He just came in and said, 'You, you're right unfortunately', you know, 'It's MND and I really wish it wasn't'. And, but he didn't, he did it very gently.
He was very good but he made me laugh because he said, 'Thank you for making it so easy for me' [laugh]. You know because he asked me what I knew about motor neurone disease and obviously I knew a lot. And he, 'Do you know what the diagnosis is?' And so basically he didn't have to correct me. I already knew. So I suppose in that respect it made his job easier for him, because a lot of people have never heard of motor neurone disease when they're diagnosed. So when they're told that it's incurable and that your life span is quite short it. It, it's a shock anyway but I can imagine it's an even bigger one when you don't [laugh] know about the condition.
Was there any information you did want at that time based on what you already knew?
No. No. I tend to have the keep my head in the sand theory. I know what, what's happening. I know roughly what my life span is. I've got obviously a good idea of the process and how my life is going to end, so I don't need to know any more than that. I'll just accept things as they come and work through the problems as they arrive.
I know you did ask me about when the doctor first gave me my diagnosis and how I felt. It was a big shock, big shock for everyone. My, my sisters wouldn't believe me when I said that I'd MND until it was diagnosed. And they never for a minute believed it would be MND. So it was quite a shock for all of us. I slept okay because I didn't think for the first couple of days after diagnosis I'd be able to sleep. But the one thing I couldn't be, bear to be on my own, even if other people were in the house, I couldn't be in a room on my own. And my poor husband, I followed him round like a little sheep everywhere. [laugh]. He wasn't allowed to leave me on my own in a room. I had to be with him all the time.
It was like going through a grieving process after diagnosis, especially when she thought about...
Not even the experts know why people get MND. She knows there's no point worrying if she did...
And not, not even the experts know why people get MND and they think it might be environmental, they might think there's a genetic factor, but they don't know so. Again the best thing to do, well, from my, in my instance is just to push it to the back of our mind and not think about it. Grieve for the, for the bits that you want to grieve about and then push it to the back and forget about it then. As you say, when it comes to the forefront you get very upset and it's not worth upsetting yourself about.
Other people I know with MND get very angry and it's the anger that carries them through. Other people research everything that's going on, they need to research everything that, any new medical sciences that are going on and research into MND. I don't bother doing that, I'm too lazy [laugh].
And again I think it takes up far too much of my life. My life's not long enough now to worry about that. It's to concentrate on my family and enjoy myself. And my way of getting through with, as I said some people get angry. Some people get bitter and I, I just make fun [laugh] and joke about it a lot. So that's my way of getting through with my stupid jokes [laugh].
She wanted to protect her children (now 12 and 10) from worrying about it but in the end told...
Yeah I didn't at first because I didn't know how to tell them and I wanted to protect them and my worry was my son because he's 12 years old and I thought if I told him the first thing he would do is type it on the Internet. And if you type in the name, motor neurone disease, in on the Internet you get all these horrific things come up. And I just didn't think he could cope with that. But in the end I had the local news, the radio channels asking me about my MND because for a, for a joke and to raise money I'd actually sold it on E-Bay [laugh]. So, to raise awareness of the disease.
So then obviously I had to tell my children. So I explained I had this disease called motor neurone disease and that I would never get any better and that I would slowly get worse and I wouldn't be able to walk anymore. And my son asked me, 'Would I die?' And I just said to him, 'Well we're all going to die someday. I'm going to die but we're all going to die someday. And I don't know when just like you don't know when you're going to die.' And he sorted of accepted that, but he is very worried about me, very concerned, gets very upset still. But saying that he still is his normal self. I haven't noticed a big change in his personality which I was worried about.
My daughter seems to cope with it quite well. I think the hardest thing is that they've, from being my, their mother and their parent and being their carer and running around after them. It's turned and they're my carers now. And my son makes me food and he makes me hot drinks and my daughter helps me to the toilet and she has to do my clothing for me to go to the toilet and at 10 years of age it's quite heartbreaking to see. And it must be very hard on them as well because they had an active mum that used to go body boarding with them and in, in the holidays go down the water parks.
They find it quite hard because went on holiday this year abroad and it's the first time since I was disabled. And we went to a water park and I was in my wheelchair and my son said, 'I just really, really wished you could come with us on the slides'. So it's hard for all of us and my husband as well.
Do you think there is anything that has helped them in the last year, the last few months, that's helped the children?
Just being my normal self with them really. They still don't get away with too much [laugh]. I'm still a strict parent but I mean I think because I'm honest with them and if they ask me a question I will give them an honest and truthful answer and I think that they know that. And they asked me a few questions and when they realise that I would be honest with them I think they're quite selective in what they ask me now. And my son's stopped asking questions now.
It's almost becoming a part of their lifestyle now that I'm like this. I think the biggest help for my children is I've got a close network of family living in the area and we're, and they support us immensely. And they've got so many uncles and aunts and my parents and they've got cousins and I think that's been the biggest support. Is that life goes on only it hasn't changed their lifestyle too much or hopefully it hasn't anyway apart from having to care for their mum.
She felt nauseous when she first took riluzole, but now has no major side effects.
So you persisted with it.
Yeah I have, yeah.
As an OT herself, she knows it's important to request equipment in advance. Her community OT has...
You said you had the stairlift and the toilet seats and everything was there anything else that you have in the house that you, to help you carry on as normal?
Yeah. No at the moment it's just the raised toilet seat and the stair lift. I've got a perching stool in the kitchen so I can sit in the kitchen and watch others while they. I've got an attendant propelled wheelchair. The MND Association kindly provided me with an electric scooter that had been donated to them which is superb. It's a little one that collapses into the car and it's so much nicer to be, have that independence because I keep my electric wheelchair in work. Obviously that will come back home to, with me when I finish work.
At the moment now we're just having an extension built downstairs for a bedroom and an en suite which is going to be a wet room with a special toilet in it, a special changing board, a hoist, an overhead hoist, ceiling hoist. And also in the bedroom we're going to make sure we've got all the appropriate electric adaptations for when I become worse so that it, there will already be the sockets for an electric bed. The ventilator if I ever get fitted one, my overhead hoist again so everything that I'll need can be fitted into there. So that's what we're working towards now. So hopefully again I'll have that already before I actually need it.
Is this something thought about, which you think about, what you need and is your planning for that or is there any, have you talked with any other health professionals and they've said you need to think about it?
Yeah I was referred to the community occupational therapist and obviously I realised that I would initially need to have a downstairs bedroom and a specially adapted en suite so that was her expertise, her special, specialism is in adapting homes. And so we sat down together with the architect and the builder to work out what dimensions and sizes we needed. You know with turning circles for wheelchairs, turning circles for hoists, the sort of things, the equipment that I would need in my bathroom. So I've actually taken all of my lead from the community occupational therapist. Unfortunately for her, her sister is towards the end-stages of MS herself but obviously she's that firsthand experience has helped me immensely as well and helped her to understand my needs.
Having strangers washing and dressing you is difficult, but she felt it was better for her...
Some things are hard to accept. But you've got to decide at the end of the day what is important to you and what you really want to do and what you think you can allow other people to do for you. So that's the only tip I've got really. I just keep going and finding, when you do find you can't do something try another way and try another way to do it and to, you know, just keep going.
She values contact through the BUILD-UK site, but has taken a break from it, as she felt MND was...
And is that how you deal with bad times by distancing?
From that and pulling on the strength of my family and friends. I used to be scared to tell my family when I'm having a bad time or particularly upset because I, obviously they're very upset as well and I didn't want to upset them any more. But I find that they actually like it when I say, 'I need your help' or 'I'm feeling down' or 'depressed' because they feel that they can actually do something to help me. And the way we do it is they just take me out and about and get me out of the house and, you know, just socialise with me. And it's amazing how being. I mean it's a big difference to your mental health and how you're feeling as well. And then you can get that you, I just feel I can draw strength from them to help me deal with my illness.
Is that the BUILD site you were talking about?
Yeah, yeah, the UK BUILD is excellent yeah.
That's a very active site. The people who are on it use it quite a lot don't they.
Yeah they do, yeah. I used to be a regular on there but they obviously have noticed I haven't been on there because I've had a message from one of the other regulars saying to contact him because they haven't heard from me for a while which is nice as well. Yeah.
I was going to ask you if you'd got in contact with any other people who have MND, if that was something you wanted to do?
I haven't met them face to face. It's quite difficult really because you're quite widespread but often through BUILD you'll just start e-mailing each other through your personal e-mails. There's a gentleman I, who I've been corresponding with who's just recently moved into the area that I live in with MND. So we've been talking via e-mail and we sort of talked about meeting up but at the end of the day if you, if you've only got MND in common it's quite nerve wracking meeting up with them because you're thinking will we have anything else in common or [laugh].
And also it's a, it's a two-way thing. It's quite worrying. You like the support you have helping one another but you're scared that. I think, well I'm personally scared that if I met up with someone face-to-face and we started meeting up that if they needed to become reliant on me or to talk to me about their problems with MND that I wouldn't be strong enough for that. I mean it might not be the case that they would do that but you don't know. So I think to. I like having the e-mail contact but I don’t think I would want personal contact with someone else with MND because I think it gets too involved then. Often on UK BUILD you’ll find someone else who’s just died who was a regular contributor and that’s really upsetting. And that’s just knowing them from talking to them on the website so I think it would be even more disturbing if you actually built up a closer relationship with someone. So I keep my distance a bit.
Continuing part-time work as an occupational therapist is psychologically important. Having MND...
I think mentally a huge benefit because I can't do anything unassisted now. And I feel that I have more independence at work. I'm in my electric wheelchair in work because I'm actually based within a hospital. It's already designed for wheelchair use and special disabled toilets. Jobcentre Plus pay for someone to assist me because I can't actually do the physical job that I used to be able to do. But I can still use my clinical expertise to assist patients and I think it actually helps them to see me because they're elderly patients who have got a number of medical problems and they're finding it hard to cope at home. So when I say, 'Have you tried this?' And they say they don't like it. I can sort of say, 'Yeah, I tried it and I didn't like it either'. Or I can recommend things and perhaps seeing someone who is disabled recommending things for them, I don't know perhaps they find it a benefit. Perhaps they are absolutely in shock when they see me trundling up in my wheelchair. I don't know but it seems to be going well.
And as I said, the, the support I get from my colleagues and that, and even that it's just that social interaction I get. If I wasn't at work, all, all my family and friends are in work. I would be stuck on my own and the only contact I would have would be with Homecare in the mornings and at lunchtime. I can't do anything for myself in the house so I'd be sat with my own, just with my own thoughts and that's when you become depressed. So it, the longer I can stay in work the better. I know I'll have to stop one day but it won't be without a fight [laugh].
You're currently doing two days a week.
In the summer holidays but when the children go back to school, I'm going to go back to three days a week then. Yeah [mmm].
And they come and pick you up do they?
I'm, unbelievably I'm still driving at the moment. My husband has to walk me to the car and he throws me in the car and puts my seatbelt on but other than that honestly the DVLA and my consultant said they're quite happy for me to drive [laugh]. So I still drive at the moment with special adaptations in the car. And then when I go to work. then I phone my colleagues in work and they come out and meet me with my wheelchair and help me to transfer from the car into my wheelchair then. And again at the end of the day they help me to transfer back into my car and my mother's waiting for me this end to help me transfer back out of the car again. So it works well.
She resisted taking an antidepressant for emotional lability but now she's glad she does. She...
A friend helped her with complicated benefit claim forms. She advises people to be realistic...
I have known a lot of people with MND to be turned down and I think it's a shame because I think if you've got terminal illness it should be enough that you write the diagnosis down and that it's confirmed by your consultants that you have that disease. But unfortunately it doesn't work that way. And the system can be quite frustrating.
It seems pointless being assessed by the neurologist every six months. She may find clinic visits...
You go in there. They ask you how you're feeling. You tell them. They, they test, test your reflexes once again which you know are appalling and very brisk. And off you go again for another six months.
I think I would prefer it if I could just make an appointment to see them when I needed referral to a speech and language therapist or if I was finding difficulty with my breathing or I noticed something that I though I needed help with. Rather than me just turning up after six months and then them saying, 'Ok'. Test your reflexes and send you off home again [laugh].
Right. You feel it seems quite pointless?
At the moment. When I get worse I'm sure I'll find them invaluable. But only when I need all the other referrals and all the other things but at the moment I don't need it.
Her care on the neurological ward was excellent. She would like to hear more positive stories...
And you've had very positive communications with your GP.
Yes, yeah and with all, all, all healthcare professionals that have been related to, well or connected with I've had only positive aspects. There's nothing about it that I could say is negative at all.