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As an OT she suspected she might have MND. She describes the diagnostic tests, including an EMG, blood tests, an MRI scan and an x-ray of her spine.
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Well as I said because my job, my profession's an occupational therapist. I know quite in depth the symptoms and signs of motor neurone and because I was treating three patients of my own with MND, I straight away thought it was motor neurone disease. But like many other people you always think that, you're just thinking the worst and it's human nature and it could possibly be something else. But I didn't really actually fit the average age bracket which is normally men sort of 55, 50 plus. So obviously I wasn't really in that bracket at all. And then nurse friends of mine that, who I worked with on the ward were saying that I could possibly just have a trapped nerve in my spine or it could be other past medical history problems that I had. That it could be an exaggeration of those but unfortunately my primary diagnosis of myself was correct.
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. |
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She would have liked physiotherapy as soon as she was diagnosed, to stop her leg muscles getting so tight, but she knows it cannot slow progression.
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Have you seen any physiotherapist?
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. |
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She suspected it was MND and wanted the doctor to tell her straight. For a few days she couldn't bear to be alone.
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The way the doctor told you the diagnosis, there is never an easy way to tell anyone that.
No.
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. |
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It was like going through a grieving process after diagnosis, especially when she thought about her children and the grandchildren she'd never see.
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Yeah so you, you, you grow to accept your diagnosis and as, as everyone will, as everyone says, your GP will tell you, you'll go through a grieving process. But my GP was talking about the grieving process and she made me laugh because she said about these stages that you go through. But what she didn't say is everyone goes through these stages at different lengths of time and also they don't go in a particular order. They can be all higgledy piggledy mixed up. But you, it, it's a grieving, grieving stage you go through. I went through the stage of crying and getting upset knowing that I'll never see my children into adulthood. I'll never see my grandchildren, which upsets me… but you live, you live through it you do. It upsets you talking about it but you'll learn your coping mechanisms. |
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Not even the experts know why people get MND. She knows there's no point worrying if she did something to cause it, but sometimes she can't help it.
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You get angry. You go through the “why me?” stage, why not anyone else? You get angry, you get annoyed. You think to yourself, “What have I done that's so bad?” And you're totally illogical. It doesn't, it doesn't hit anyone in particular. It's very indiscriminate the disease, like any other disease, but even though you know that it's illogical to think that way, you do think that way. You know, “What have I done so wrong?” You go through thinking, “Was it my lifestyle? Was it food I ate?” But there is no, there's no rhyme nor reason to it.
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]. |
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She wanted to protect her children (now 12 and 10) from worrying about it but in the end told them she wouldn't get better. The hardest thing is seeing them being her carers now.
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I wanted to ask you about telling your children, how you told them?
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. |
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She felt nauseous when she first took riluzole, but now has no major side effects.
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Yes I'm on the riluzole Again some people say that it only increases your life expectancy by 3 months but to me 3 months is better than nothing. I've heard other people saying they get really bad effects from Rilutek and it makes them very ill. I was ill on it for the first couple of months but after that I've had no ill effects since. It was making me ill in the fact that it was making me feel quite nauseous and shaky as if I was about to come down with something. And I did vomit quite a bit with it, on it. But once I'd got past the first couple of months I've been fine. My body's obviously got used to it now so. I would say persevere with it for the first few months at least anyway before you decide to give up on it. And as I say, if it does give you a three-month extra it's better than nothing at all.
So you persisted with it.
Yeah I have, yeah. |
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As an OT herself, she knows it's important to request equipment in advance. Her community OT has taken a lead in advising her on adapting the house.
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Again I think it is an advantage being an occupational therapist because I know how long these type of things take and because I know what my progression is. And I've also got a good, good idea what I can be supplied with I always requested them before I needed them. So by the time I got them I was just about needing them then. With my power wheelchair I requested it when I was still walking. Also because of the way I filled in the form I was automatically put to, at the top of the high priority but I still waited six months for my wheelchair by which time I needed it then.
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. |
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Having strangers washing and dressing you is difficult, but she felt it was better for her marriage and her family to have carers coming in.
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My biggest tip I think is, “You've got to concentrate on what you really want to do and then you leave everything else to every one. You leave everything else to everyone else to do. My biggest thing that I had to do was swallow my pride and accept that I could no longer wash and dress myself. And rather than expecting my husband or family to do it I accepted the homecare to come in. And when you've been an independent person and complete strangers are coming into your home, seeing you naked and washing you and dressing you it's quite difficult. But to my mind it was more important for me to have that and preserve some of my normality in my marriage and my normality with my family so that they weren't having to do all of that. So that was a conscious decision.
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. |
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She values contact through the BUILD-UK site, but has taken a break from it, as she felt MND was taking over her life. She's not sure she'd want face-to-face contact.
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And I had to distance myself a couple of months ago because I got so involved with MND that I felt that I was becoming, that was my personality and my person. I was becoming a person with MND rather than the person I am that happens to have MND on the way. So I've deliberately distanced myself from a website that I used to go on to which is excellent, it's for people with MND and carers that they can talk to one another and give advice. And it is really, really excellent and I will go back to it but at the point I've just stopped going on there. Stopped sort of looking into alternative therapies and just thinking that I need to find, rediscover me and what I was like to begin with. But I will go back to it but I just think I need that distance and that space at the moment. So we all deal with it differently. We all have good times. We all have bad times and I think when you're on the bad, when you're having a bad time you've got to try and discover the best way to get through it. And what best way is for you might not be a best way for someone else. You've got to just think what is good for you and what helps you. So that's what I'm doing at the moment [laugh].
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. |
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Continuing part-time work as an occupational therapist is psychologically important. Having MND gives her new insights into her work. She can still drive to work.
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Can you tell me a bit more about the benefits you got from continuing to work?
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. |
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She resisted taking an antidepressant for emotional lability but now she's glad she does. She enjoyed the laughter but not the crying.
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Recently I did give in because I was determined I wasn't going to take antidepressants. And I was sure that I was such a strong person I could cope and then in the end my family kept saying go on antidepressants. I was going, “No I won't, I won't. And I finally gave in and started taking antidepressants about two months ago and that's the best thing I ever did. So I'm back to my usual self because unfortunately a side-effect of MND is that it can make you laugh but it can also make you cry at inappropriate times. I thoroughly enjoyed the laughing because I'd laugh so much I'd have tears coming down my eyes and my ribs would be aching and it, it was lovely, the feeling, the euphoria you got with it but I didn't like the crying. So started taking the antidepressants and the crying stopped. Unfortunately they euphoric, euphoric laughing stopped as well so I wish I could have that back. But no I'm back to my usual self now. So don't be stubborn when it comes to it. Don't think you're weak then if you take medication. If you need it take it. I found out from my own personal cost. |
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A friend helped her with complicated benefit claim forms. She advises people to be realistic about their level of disability.
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I was very lucky. A friend of my mother's actually assisted elderly people with attendance allowance, and the carer's allowance form was very, very similar. And so she assisted me with it. But as you say, how most people fill these forms in I don't know, because there's myself, my sister and the lady who helped and it still took us five hours to fill in the form. And you know, this is someone who is quite articulate, and so how other people cope I don't know… And then they only gave me the lower rate allowance so when I became increasingly ill I asked if I could re-apply and I had to complete the entire form all over again. So it's not easy, and lots of people don't like to put down when they're at their worst, because you don't like to be negative. You always want to be positive. “Oh well, I can do this on certain days,” but unfortunately if you do that on the form then you're going to get penalised, so you have to write down what you're like on your worst days, otherwise then you won't get far.
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. |
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It seems pointless being assessed by the neurologist every six months. She may find clinic visits more useful when she needs more help from a range of professional staff.
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Every six months I'm assessed by my neurologist but to be honest with you I find it a pointless task really because if I was struggling with anything I would go and see them. So I just feel like I'm going in and it's sort of - I wish I had the vocabulary to explain myself a bit better. I feel that you're just going and they're paying lip service to you really because there is nothing they can do for you. There's nothing new on the markets that they can give you.
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. |
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Her care on the neurological ward was excellent. She would like to hear more positive stories about the quality of care.
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I thought that, that my time on the neurology ward was excellent. I've got no complaints at all. And it seemed to work very well there. And see, observing them with other patients with neurological problems, you know it all seemed very good to me. I've obviously heard some negative points but unfortunately you only ever hear negatives. You never hear people saying about the good points so, which is quite sad really because I think for every negative you'd most probably find three or four good points of positives but no one ever sort of mentions the positive side. So because I've heard so many negatives it really makes you frightened to go into hospital as a patient with MND because they say that outside the neurological ward that people have little understanding of your needs, you know, and what you're going through. But again I, I'm keeping a, my opinion on that is going to stay neutral because I'm sure there's a, lots of positives out there that no one ever hears about. So I'm afraid I can't say anything from my own experiences. I haven't had anything really bad happen to me. I've just had positive experiences myself.
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. |
