Archive for the ‘Social Services’ Category

Lynsey’s Story

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                                                                      Transcript

Ok Lynsey, yeah, I mean it’s absolutely brilliant that you’ve offered to do this for us and you asked if I would just kind of start you off really. And my understanding is that there’s a couple of particular things that you want to kind of talk about and one being the fact that you’re deaf and the other being the fact that you’ve got cancer. And I’m just wondering which one you’d like to start telling your story about?If you want to start from the beginning, it would probably be the deafness really. I was born deaf, I was dead when I was born due to lack of oxygen to the brain and it caused the deafness. I was about three year old before anybody took any notice and I got diagnosed with deafness and then I got my hearing aids and I went through school and I got bullied basically and stuff like that through being deaf, being called deaf lugs and it was quite hard really. But I did have a close friend who used to come into me lessons with me and so if I couldn’t lipread the teacher or hear her through the equipment I had properly, she would look at me and tell me what the teacher was saying and stuff. And then as I got older I got more embarrassed, embarrassed about being deaf, started like pulling me hair over me hearing aids and you know if I didn’t hear what anybody was saying I’d back out of the conversation, slink away and stuff like that. And I just wouldn’t go out socialising a lot because I thought if people knew I was deaf they wouldn’t want nowt to do with me, they’d pick on me basically. Then as I got into seniors I started mischievous and being kicked out of lessons deliberately because, for that reason, because I didn’t have the confidence so I thought if I got kicked out of the lessons and then I can’t bullied and nobody would find out I was deaf and stuff. Then there used to be a woman who came out every week to help with me speech and stuff like that. I started not wanting to see her anymore and just, you know, just all embarrassing stuff. So as I got older I started going out and I wouldn’t mix with new people who didn’t know me because like I say boyfriends I was more frightened of that if they found out I was deaf they wouldn’t want nothing to do with me and that. Then I heard about, when I was 20, I heard about cochlear implants to make you hear again sort of, so I went ahead and seen about that and I qualified for it. And when I was 21, I got the operation and for the first few months it was brilliant, I heard car engines, birds and you know, stuff I’d never heard before. It was magnificent, brilliant and then I started getting seizures. We didn’t know what was causing these seizures so I got put under mental health for a while and this went on for three and half year; throughout, my argument was it was only when I got the implant in this started. But a couple of people said it could be you know one of the electrodes hitting a nerve and then another one said it might be your tolerance can’t take it, but they would never like write it down on paper or anything. So I went to see a solicitor about it and in the end I’d had enough, I just said I’d just want the implant out and the doctor agreed to take the implant out within two weeks and I’ve never had another seizure since.But I had to, I lost a lot of my life for that because before the seizures I was doing driving lessons, sign language courses, hair and beauty and all different kind of courses because I was trying to get on, because I’ve always wanted to work with deaf children, that was me aim to aim for and I had to pack the lot up because of the seizures. And then just after the seizures stopped, I tried to get meself back on me feet again you know, start to get the confidence to go out again and stuff like that – I mean get it into my head I’m not going to have a fit and stuff, I started having problems with bleeding and that but I used to go abroad a lot but I used to take the pill and that stopping and starting so I wouldn’t have a period when I was on holiday so I just put it down to that and that was in the October time. And then over the Christmas, the January I started having dreams that I had cancer and then we went on a cruise at the end of January, beginning of February and I started noticing blood clots and you know stuff like that and when I come home I just decided to go and see a doctor who done some tests and stuff. It took a couple of weeks after that before they done a smear and then I got called straight back in and that’s when I found out I had cervical cancer.So, it was just, the morning before I found out about it I’d just been watching about Jade Goody on the tele and then to go and find out I had it meself, it didn’t quite sink in because I just started on rabbiting on about, I don’t even know what I was talking about. And the doctor said ‘do you understand what I’ve just said?’ and I said ‘oh yeah’ and just started talking about something completely different and it wasn’t until I got outside and then I looked at me sister, she looked at me and we just both burst out crying. And it was like, did we hear the right thing, you know.That sounds a really, really important point Lynsey that you, when you were in getting that information that it felt like, it felt like it wasn’t happening to you; it feels really important for people to know thatYeah. But the first thing that went through me mind though was to protect people like me husband now, he was my partner at the time, me mam, you know everybody who’s lost somebody due to cancer and I thought, well how am I going to protect them? And me mam’s best friend who just died, it was the day before her funeral when I found out and I was like ‘well I don’t want to tell me mam, because she’s got the funeral to go to’; but me sister, she wanted to tell her because she said if she finds out that she knew, then she’d get the blame for not telling her so it was just one of them situations, where we didn’t know what to do! But we did tell her but my main thing I just wanted to protect everybody and I just told everybody I was ok all the time and you know everything’s just, like I say; it was like it was happening to somebody else. I just didn’t know where I was or what I was doing. I felt sorry for this other person, but I didn’t feel sorry for me! Then if …….. was crying and I was more upset because he was upset than anything else ‘cos to me when a grown man cries, there’s something wrong! It could be any stranger crying if it’s a man I cry.
And after that I had to go and get some biopsies done and that. I had a holiday from my club booked two weeks prior to that and the doctor just said ‘cancel any holidays or any plans you’ve got for this year’. And so I just knew that was the answer for me and I don’t know, I just come out gobsmacked I think. One of me friends was with me and she was upset but I just couldn’t seem to cry or anything, like I say, it was going through me mind, ‘how am I going to tell me mam, how I am going to tell, you know, me husband’ I just wanted to protect everybody else.Then I told them obviously, lost the holiday, then I had a hysterectomy, no sorry I had the lymph nodes removed and then five days later I had the hysterectomy. Took a while to recover from that. Then I started getting like, allowing visitors, people I hadn’t seen in a long time and you know, it got me down a little bit because I thought ‘well they’re coming, they must be thinking – oh then she’s going to die, we best go and see her’ but I had no grudges against anybody, all I wanted was me immediate family from ……… side and from my side, just them, but nobody else. And we had to wait six weeks for a phone call to find out if the lymph nodes were positive to see if I needed chemo or radio and I was meeting this other girl in hospital at the same time and we were texting each other, we were waiting for the phone call which we’d taken up to ten o’clock on the night. Finally the phone goes, ………answered, got off the phone, said ‘one of your lymph nodes was positive so they’re going to give you chemo and radio’. I just felt sick at the thought of it because you know I’ve seen me aunty go through it and I seen what it done to her, the chemotherapy and not realising like there was a different type of chemotherapy I was going to get, but to go through more when I was done recovering basically and then when, on a Tuesday I used to have chemo and Monday and Friday, radio. There was another girl I got friends with, in chemotherapy and she seemed, you know, dead bubbly and like a fighter and I used to look and think ‘why don’t I feel like that?’ I was still exhausted off you know recovering from the operation itself. To me, it was too soon, really too soon because it was only like six weeks after the operations that I was going back to do this, I still couldn’t walk properly or anything. And then like she used to tell me, after her radio, she used to go shopping. Well, I used to fall asleep in the room, I couldn’t even, you know, do anything at all but when I asked the doctor why is she going shopping and I’m sat here falling asleep and I can barely move and he said ‘well everybody’s individual’. He said ‘don’t forget, you’ve had the operation, she hasn’t’. So she was getting internal radiotherapy afterwards because she didn’t have the hysterectomy so there’s just, everything just seemed to happen so fast and I was going there every day and me life was just going, I couldn’t plan anything, I couldn’t go nowhere, I was basically just sat there waiting and we had rubbish times, there was three o’clock for me appointment for me radio but sometimes we were sat there still until half past six because they were, you know would go right behind on the times and stuff. That was our life for five weeks.And then, just as I seemed to recover, I started getting pains in me legs which I got told was neuropathic pain due to the damage of the nerves and so much damage what the radiotherapy had done to my system, so I had to accept that. I started driving my car again and started getting back on track a little bit and seeing me granddad again and had a little bit of happiness and you know and then it wasn’t until I seen the doctor, the main doctor, ……… and he said ‘everything’s looking ok’ so that give me a little bit of peace, even though I still had all the side effects of the radiotherapy. Got Christmas over with and started being sick, badly, couldn’t keep water, couldn’t keep nothing down at all and I knew something wasn’t right and then the dreams came back again and I was sat up in a hospital bed writing letters, you know, it was just so, seemed so real and I was trying to tell him something’s wrong and you know your own body. It took til, I collapsed sorry on February 16th 2010, I’d been out for me nephew’s 18th. I’d only had a couple of bottles of alcopop because I knew the tablets I was on it was dangerous for me to drink. We went to a take away shop and the last thing I remember I was having a can of pop and that was it, the next thing I know I was in a hospital and wires and everything coming off me and ………. screaming. And he said ‘you collapsed and more or less went into a coma’ so me sugar levels and everything was all down, all low. They took me for scans and that, I was in and out of consciousness all night and I got kept in hospital for a few days and ………… came to see me.Then I got took back home and they changed me medication around and stuff but then I was just like getting dizzy spells and just, I was vomiting and it was like, just come out of nowhere. Anyway, ……. phoned the NHS again and they come out and me sugar levels and stuff were all dead low again so they phoned the hospital and lucky enough, ……… was on that day, she knows everything about me, she phoned and got me in ………. We got to ………, sat there for eight hours, I hadn’t seen a doctor, I said ‘I can’t stand it’ I was crying by then. I’d had no pain killers, no nothing. I said ‘I’m going home’ and walked out and it wasn’t until they realised that we were walking out and they said ‘oh doctor’s been round’. I said ‘a doctor hasn’t been round; we’ve been sat there for eight hours’. Anyway he finally come to see us, he said I was getting kept in and I was getting an x-ray and stuff but they put me on paracetamol, I was having morphine originally and they put me on paracetamol so I was doubled up in agony all night. Got the x-ray and then eight o’clock next morning ……… from Hartlepool was at me bed and then I knew then that there was something not right. He said ‘how do you feel about going in the hospice?’ I said ‘well I get my counselling there, it’s a nice place and peaceful you know, I like it’. So he said ‘right, there’s a bed there, can you get there?’ So I said ‘yeah me partner will take me’ and this is when I put in the hospice for the first time and I got told the cancer was back again.Then I got an appointment with ……… again, and he offered me 50/50 on radiotherapy but it had to be intense radiotherapy as well so I didn’t want to have it, I’ll admit I didn’t, I did it for everybody else. It’s the same as why I moved on; why I got on with me life was for other people. Nothing because of me because it wouldn’t have been me, I worry about other people you know, protect their feelings ‘cos me mum, to get through it, she’s really bad with her nerves, she turns to the drink so I had to protect her to protect everybody, so I got then about half way through me radio therapy, I was just laid in bed crying me eyes out, I said ‘I can’t do it, I don’t want to go back’ and then ……… was crying and he was basically on his hands and knees begging me to do it. But the state I was in I probably wouldn’t have lived another month if I hadn’t got it done and because of him I done it. This really did leave me in bad state afterwards, I was bleeding from me bowels and stuff like that and pain everywhere, it must just hit every nerve in me pelvic area.We had that, we had some, me friend done fund raising event for us and raised some money for us to go to Blackpool for a few days. You know after the treatment finished and stuff and we just got on with life basically, it was like ‘well where do we go from here?’ me Macmillan nurse was there helping ……… and ……… was counselling, which I looked forward to coming to me counselling lessons because you don’t feel like you’ve got anybody else to talk to without hurting them so I got everything off me chest to poor ………! Then just, I know I had all these problems but we just thought the cancer was at bay, that was the last I knew from me last scan. And then I was in and out of the hospice with sickness and stuff; then the last time I was in here, in the hospice, October, I had a CT scan and it showed that, I don’t know the exact word for it, but it showed that there was a bit of swelling on the kidney but nothing to worry about. That was October and then I had another scan on the 25th January this year, 2011 and from October to then, the kidney had enlarged, it was three times the size it should have been and the uterus was pressing on to the kidney and the tumour was pressing on to the uterus. The mass they recorded they didn’t know whether it was dead or whether it was active and I needed a stent in because it was causing a blockage and that was why I was getting so much pain. So I went on the 11th February at ………, got the stent in, but I’m still having problems now. Then I went for a PET scan which was basically to find out whether the cancer’s active or not but ……… said there was nothing else he could do, he didn’t have a magic wand and stuff. So I had the PET scan and I’ve just got me results the other day to say that the cancer is active and they’d be surprised if I live past this year. So we’ve got to live month by month, live each day as it comes.So my advice to anybody is to go and get a smear, really get a smear, don’t care what excuse you’ve got for it, it doesn’t hurt, it’s two minutes doing it, could save your life, it really can.You know it hit me really hard this year because I thought I’d been protecting family and everybody for the last two years and I’ve never once thought of meself in this and now I haven’t got long now, I’ve know I haven’t, you know, and everybody’s saying ‘oh you can do it, you’re a fighter’ and I screamed and shouted at them all, ‘you know you can’t expect me to fight this, this is the third year now, I’ve gone through it and all I’ve ever done is protect your feelings. What about my feelings? Nobody supported me!’ you know all I’ve, ‘cos you, it feels like sometimes people just want you, when they say ‘are you alright?’ they don’t really want to know if you’re alright, they just, you know, they don’t want to know, want your details and so you just say ‘oh yeah I’m alright’ and that’s it they just change the subject and go on about themselves or go on about something else so they think ‘well that’s all I want to know’ and they don’t really want to know if I’m alright. A handful of people, on one hand I’d say a few, very few people who will turn round and say ‘no really, are you alright? I want the truth’ to me and that’s it, but nobody else really asks. When I’ve been in hospital, I do realise the difference from being in the hospice and being in the hospital, it’s when the nurses come round they don’t seem to have the time to talk to you, they just come and give you your medication, they’re off to the next bed, the same as the doctors that come round on a morning, they have a look ‘oh yeah she’s alright’ or ‘give her this, give her that or discharge her’ and go on to the next person. Where in here, when they come in the hospice, come round and they sit and listen to you, they pull a chair up and listen to every single thing you’ve got to say and they give you straight answers. They don’t lie to you, they, you know they’re very, very honest with you. The nurses come in and they say like ‘do you want to talk?’ and they give you that chance to talk. They seem to have a nurse per room kind of thing to me, ‘cos you could sit there for a full hour with a nurse and they’ll still sit and listen, they don’t ignore you. And I think they should be trained in hospital to do the same as what they do in the hospice ‘cos I know, I’ve been in ………, I’ve been in ……… and I’ve been in the ………. ……… is a very good hospital, I don’t doubt that, that is a good hospital but the ……… and ……… they haven’t got the time of day for you; they haven’t even got the care in my eyes and I think everybody, like who’s involved in a patient, whether they’re social workers, counsellors or whatever they are, they should really sit and listen to the person and find out what’s wrong with them and what’s bothering them instead of sometimes they fob you off and just say ‘oh go and see a psychologist, they’ll sort you out’ you know and it’s not about psychology, it’s not about mental health half the time it’s about the physical side of it and the hurting and it really does hurt. I mean you get people coming out to your house and yes and they sit and you tell them what they want to know, they go and then you sit and cry your eyes out and you feel like you’ve got nobody at all. It’s a very lonely world when you’re living with cancer or deafness or whatever your illness is, you need somebody to sit and listen to you, you really do. Because otherwise, not mentally but physically the person can’t get through it, it wears them out, and they’ll just sit and think ‘well what’s the point in fighting something when nobody’s interested in it?’I mean I’ve feel like I’ve give up because, my reason being because I’ve fought this and I really have fought this with everything I have and now I’m tired, I’ve been in too much pain and I’ve never had a break from the pain. If I’d had like a week’s break from pain even, I would think that worth fighting for because I’m going to get a week’s break, but I haven’t had a break at all. But whatever happens it’s God’s will, in my eyes being a Christian, but I haven’t, if it wasn’t for the hospice I’d have give up a long time ago, I really would have. And I think people need to understand why the hospice needs the volunteers, the fund raising and everything because if there wasn’t this place to go into, then I feel sorry for the people who have to go to hospital and do it, I really do.It sounds incredibly important that people have the time for you and that you feel kind of understood and that kind of helps a little bit but I hear also you’re saying about the relentless nature of the pain that you’re in and that you’ve got to a point where it feels like it’s, enough’s enough and I know we’ve talked about dying, haven’t we Lynsey and it feels like as a Christian, that’s something that you’re not afraid of but there’s a process to go through and that’s a different thing isn’t it?

Yeah I’m not afraid of dying, I’m actually scared of the pain because I know the pain’s bad now and if it didn’t get controlled and like, like I say I am on a lot of medication, and nothing at the minute seems to be helping. I know it’s got to get worse as well because of the type of cancer I’ve got as well. I mean when I had the intense radiotherapy last year it was to kill that lymph node and it still didn’t kill it; it was still causing all these problems. I mean I’ve got it in black and white in writing I mean I got it one of the doctors who wrote it, one of the other doctors that sent me a copy and it’s just sad, it really is. I mean you’ve got your family there yeah but you’re trying to, I don’t know, you don’t want them upset because that upsets you more so, and you find out who your family and your friends are, you know they just (inaudible) anyway but that’s why it’s so important to have like people like yourself or the Macmillan and whoever’s involved in your care, to sit and listen to you. You know and like I say about going in hospitals, the nurses should be made to sit and listen to the patient but if they don’t do that they’re obviously not in the job for the care are they? It’s really important to have somebody there, really it’s

That sounds like one of the most important things that you want people to know, that you know, about having time to listen to what you’re saying and in a way it might not have to be a long space of time but it’s just feeling that you’re heard

Yeah, that’s it, yeah. I’m glad like they’ve got, they’re doing the thing for young girls now, they have the chance of the injection to prevent them from getting cervical cancer. But I mean, I am a hypocrite to sit here and say you know, ‘please go and get a smear, get this done’ because I was one of them girls who said ‘oh I’m not going to get that done, what you don’t know won’t hurt you’ and I tell you what, it does hurt, it really does hurt. So you know, I would advise people to get it done. The main thing, it wasn’t the results that frightened me, it was because people say they’re going to use a clamp to open you up and that hurts and I was thinking ‘oh no, I can’t bear the thought of anybody’ not even the embarrassment but it was just because they said it hurts, but it just put me off and there was one time I did go, I’d been watching Coronation Street and Alma had died of cervical cancer on it, and I turned up and then I was having me period when I got there, I didn’t realise ‘til I got there and they said ‘oh you’re bleeding, we can’t do it’. But me doctor’s, I won’t name it, that I was in at the time, they never ever sent back for me, I’d had a miscarriage and normally once you’ve been pregnant don’t they, you have to go for one and they never ever sent for me and then I changed doctors. About four year ago, I changed doctors and ……… he’s in ……… now and they kept sending me a letter every other week, you must come for a smear test you know and I kept ripping them up and then in the end, with the problems I went anyway. Even when I went to see the doctor I used to lie and say ‘oh yeah I’ve got an appointment’ and I never but they did send for you and that’s another thing, it’s important that the doctors do send for the girls, keep writing them, even threaten them like you’ll be struck off if you don’t come for, you know, anything that can save lives. So ….

It feels like, that’s amazing Lynsey, you know it feels really lovely to have heard because obviously we’ve met a lot and we talk about certain things but just to hear your story has just been wonderful and you’ve brought up loads of really important things about what’s helpful and what’s not and you know kind of advice to people and you know there’s lots of little gems in there I think that is going to be really, really helpful. I don’t know whether, you know there’s anything else from your perspective ……… or anything else that Lynsey’s thinking that I want to include in terms of what’s helpful, what’s not, bearing in mind you know the kind of people that are going to listen to this.

Yes it’s mostly hospital staff and hospice staff that you worked with isn’t it. Have you had any contact with any other services?

Recently social services have got involved now they’re helping, they’ve got on to me landlord, I’ve just moved in with me husband so normally you have to be living there for 12 months to become a tenant but they’re aware of me situation and so they’ve basically got me on the tenancies thing and they’re getting me a door, you know electric door so I can buzz people in with me being upstairs I don’t even, although I’ve got me stairlift, it’s saves me going up and down. But with me being deaf, I still won’t know who it was so I can’t buzz them in so they’re getting the one with the CCTV, we’re still awaiting for that and they also, there’ll be like a watch where, and a vibrating light if somebody’s at the door or the phone goes or the smoke alarm, telling me which one’s going off. So that has to come to a £1000 that’s all they’ll provide; the only thing that I’m having problems with at the minute, I can’t get in the bath even with me bath chair, it’s causing a lot of pain due to me legs and stuff but I’ve tried it and it really is painful so I’m having to get a washdown stood up. They’ve given me a chair now, like me sister give me a washdown and I’m having problems trying to get a shower off somebody and nobody will provide it so, ‘cos there’s no money anywhere so now I’m having problems with that and the only way I can do it is try asking round the family which, they probably wouldn’t raise the money, to try and save some money to get a shower ‘cos I can’t afford one, but …. and it is a big problem at the minute

it’s those things that maybe I would take for granted that I can do every day like look after myself and have a shower, I get in and out of the bath and have a shower that make a huge difference, doesn’t it Lynsey, to just feeling on a day to day basis that you’re getting on with life?

Well I just tie me hair back ‘cos obviously it’s greasy it’s hard to get it washed, the only good thing is when I was in here there was a shower and I was having one, it did make me feel that little bit better being clean, you know even getting a wash down you still don’t feel, you know clean, clean enough so … the shower, I’ve never liked showers anyway, I’ve always loved me baths and I really do miss me baths but when I was in Scotland I was thinking, everywhere, everytime we’ve gone on holiday there’s always been a shower ‘cos I’ve been disappointed not having a bath. So this time there was bath, but it had a shower head over, but that’s still no good ‘cos I can’t get in and out of the bath. So what I’m always having to do is go over the swimming pool and use their shower but I’m still, the bikini on, cossie on so I’m still like not getting washed properly you know in the private parts so …. I think there should be able to be somebody who could fund for things like this and I mean if I could get one I would obviously have to get in touch with the ……… and ask them for permission to take their bath out and put a shower in ‘cos ……… son-in-law, three of them believe or not are all plumbers so there’s not a problem getting it in, it’s getting the shower and the tiles, that’s the problem. So …. but just have to wait and see. I mean I did see the OT and she did say ‘well even’; I said if we could come up with, ‘you could tell me how much it’s going to be and I can try and raise that money’ and she said ‘well it will take months anyway’. I said so you’re saying basically months I haven’t got, but I’ve got an Argos that I’ve seen, just the cheapest, the tray and the shower and I didn’t realise you’d need a water thingy you know, but if I could just get the price and then I’d know how much I’d need to try and raise for a shower. So, it does, like I say, it will help and I’d be able to, with me chair, be able to go in myself if I want to, it’s only if I need me hair washing or something, need someone in probably to wash me back, but just say one night I’d just fancied a quick shower just to warm me up or whatever put me pyjamas on. You know it would be nice to do something for yourself for once, without having to depend on somebody else.

I think that’s one of the important things isn’t it Lynsey, because I know you’ve said before that quite understandably, your husband and your close family are concerned about you so you feel like you don’t get, you’ve lost all your independence and sometimes you just crave to be able to do something for you.

I mean ……… won’t leave me on me own anytime now so that’s that bit gone now. I mean I’ve lost me car, that was me independence, me car. ……… gets upset because like, coming here for example, I have to stop him doing whatever he’s doing to come and drop me off, two minutes away. Where if I had me own car, I could do it myself, so you know. He says oh no he says he doesn’t mind and that but then if he can’t really, if he’s got a doctor’s appointment or something, and he really can’t bring me or pick me then I’m having to depend on somebody else because he won’t leave me, he won’t let me get a taxi on me own or anything like that. He needs to make sure that somebody’s going to be with me otherwise he’s going to cancel his appointments. I mean he has a lot of health problems himself just so I’m looked after and that upsets me because I think ‘well his health is important as well’. He has COPD hypertension and all that; he’s got problems with his feet and stuff like that, arthritis, diabetes, angina and I think ‘well, you know you’ve got to look after yourself as well’ but he’s putting me first. But I suppose if it was the other way round I would do the same. I even said the other day ‘I think I’m going to save and try and hire a car for the day just to have a drive about’. There again if I got pulled I would get me licence took off me because of the drugs I’m taking, I shouldn’t be driving. I’m a danger to meself and others, so

You can’t win can you?

It does take away all your independence and everything. I mean I wouldn’t have thought if somebody told me ten year ago, your sister’s going to be washing you down and you know seeing you naked basically, I’d laugh in their face because I, ever since I can remember being little, I’ve always been a private person, I’m really embarrassed as well you know, I wouldn’t let anybody see me get changed or anything. Where me friend used to get changed in front of me and I used to turn round and think ‘eeh what’s she doing, she’s a lesbian or something like that, you know I just, I was always a private and close person but when you’re poorly, you’re not bothered who sees you I don’t think. And you know, even if, I think me brother, if it got to no choice and me brother had to do it, I don’t think I’d be bothered because when you’re poorly you can’t be bothered. If I was on one of me good days and happy and stuff, I’d say ‘no you’re not watching me ………’ you know, but it’s very rare you get them good days now. There’s a lot, we’re doing a lot of crying and it’s more upsetting I think, it’s hit us more harder now what’s happening, even before we found out that I, they’d be surprised if I see this year out. And we’ve found it more harder to share than what we’ve found it any other time and I think it’s been the burden of protecting others

So it feels like you’ve got to, ‘cos you very clearly said initially it was almost like it was happening to somebody else and then you were more concerned about protecting other people and that in way stopped you from taking it in and it feels like now, you know, through all this time, this is the time where you and ……… particularly have kind of, the reality is, is hitting you now and so you’ve been more, more emotional about it and you know kind of realistic in a way about it as well

It’s like the other day ……… said even though it’s hard, we’ve got to, you know we’re going to have to do it; you know the funeral’s already booked in, we’ve already done that a couple of year ago, but now we’ve got to go and pick the plot you know. I’m supposed to do it, if I’d have done it last year I’d have been fine, because I was fine about it all, where now it’s going to be harder to do it now, we’ve got it booked, it needs to be done. And if I want something I want on then I’ve got to go and get all that written and you know stuff like that and it is like, there’s jewellery and stuff that I want to take with me and I was thinking the scan was more important because that’s me baby but ………, ‘cos I have a thing like I always say ‘you know they take the jewellery off you, you know they pinch it’ .. there’s going to be an open coffin so ……… just going to come in at the end before they shut it and put the jewellery on me and then shut the coffin so

So is that particularly sentimental jewellery Lynsey that you want?

……… bought me, yeah and he buys me all the charms for it and there’s only him that buys them so, but me wedding rings, I’ve got a long necklace which is unisex, I want ……… to have them round his neck, so keep them himself. But the other stuff, there isn’t like much more left because I handed stuff into the hospice and I’ve sold stuff towards a holiday and stuff last year and there’s nowt really left really. But like I said to him, last time, stop buying clothes and I sort my clothes out ‘cos anything clothes or anything like that it’s all going to the hospice. But I have loads of teddies, as you know I’ve collected (inaudible) and stuff and they’re going to the … Hospice. So we know exactly where’s going where but that’s down to ……… when he’s ready to part with them.

You’ve done a lot of planning haven’t you? And as you say, last year you were able to be very clear and plan your funeral and what you want and pay for it as well, but it’s like now you’re fine tuning that somehow and it feels like it’s harder because the reality’s hitting home more and

We’ve lost a lot of things as well and the main thing, we had a cruise a few year ago, before I found out that I had cancer then as you know I wanted that one last cruise, didn’t I, last year? And then we found out the cancer was back so we had to cancel it and I lost all of my money, that was the last of our savings so me brother done a boxing fund raising do which I got some money and the hospice got some money, mine was to pay for me funeral, the rest went to the hospice and like, just like you know I can’t I know we’re never ever going to be able to go on that cruise and do that last thing because I know there’s no way the money can come from anywhere, we can’t even afford a shower never mind a cruise, so

And you got married

My main thing to go on to people, if you want to get married, if you want to have children, whatever your plans are for the future, don’t wait for the future, do it now because you never know what’s round the corner. Are there any more questions you want to ask me? I’m stuck now

You were saying about getting married

Yes, Lynsey’s just got married

Yeah I got married, it was a secret wedding. It was me mam and dad and his three daughters there. It was nice, we both went in as if we weren’t bothered, soon as they started their talking and that we both burst out crying because the more it meant to us, more than anything. We even had the registrar crying because he knew our situation as well

That was quite recently then Lynsey, was it? Quite recently

Oh yeah

In January

January the 6th, yeah. What happened, when we booked it three weeks before, I’d ended up in, we had to go down, you know show your passport and stuff the next day, but I don’t know, they phoned an ambulance came for me anyway, it came to take me to ……… because I’d had really bad stomach pain and it had been all day. They took me to ……… so ……… tried going down with all the ID and that and they said ‘oh no we can’t accept that’ so he said ‘we’ll try and fetch it down tomorrow’ but I got kept me in bed so what I had to do was make, make out I was going for a coffee and I flew down to the registry office and the registrar had got snowed in, so they said if you don’t get it done tomorrow you’re going to lose your day. I said ‘well that’s your fault not mine’; they said it didn’t matter because that’s the way it works on the computer but luckily enough that day I got discharged and we finally got there. Because we wanted it, 6 is me favourite number, it was me Nana’s birthday and it’s the last day of Christmas so it was still kind of involved Christmas as well, ‘cos we did want to try and get married over Christmas but that was it, it ended up perfect anyway.

Steve’s Story

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Transcript

Ok, well thank you for agreeing to contribute to a narrative to support the education of health care professionals. Perhaps if you could reflect on your Parkinson’s, how it started, how it affects you. Particularly talking about your medication you need to take and any experience you may have had taking medication in hospitals.

Right, well I was, first had problems with riding a motorbike. The problems I had was I changed from being a custom bike where you sat with your feet forward to a sports bike and I was starting to get cramp in my legs and I kept stalling it. So I changed all the bits on the motorbike thinking it was the clutch and then one day I couldn’t get my foot out from under the gear lever to change gear so I thought there was something wrong so my wife decided I had to go to see the doctor.

Went to see the doctor and he referred me to a neurologist, and I went in to see him on I think it was June 3rd 2003, and he basically had me walking down the corridor, had a look at me on the thing and says ‘I see what the problem is’. When I came back in the office he says ‘is your wife with you? Would she like to come in’ and that’s when I thought ‘there’s something not right’. so my wife came in, basically sat down, she asked him, he asked her a couple of questions, ‘did I have a tremor, this that and the other’ and bits and pieces and he just turned round and says ‘aye you’ve got Parkinson’s’. Which, I just sort of like looked at him in disbelief, you know it was quite a shock but so like it was basically, ‘you’ve got Parkinson’s, we’ll have you in the hospital in a couple of weeks to do all the tests and make sure’ and within a couple of weeks I was in hospital for like two days where they did all the tests and to make sure that it wasn’t something like copper poisoning or, because I used to work in garages before, but I was actually an HGV driver when I was diagnosed.

So went into hospital and had all my tests done and it was basically ‘you’ve got Parkinson’s, we’ll start you on medication’. And they started me on half a tablet of Selegline, I was on that for about four months and then they upped it to one and then I was on one three times a day and they also introduced Mirapexin over the next couple of years. The problem I had with the Selegline was I’m quite compulsive anyway so I would go and play on the computer for like eight or nine hours, no problem but it was getting too hard with the Selegline, it was disrupting my sleep patterns so that when I would stop on the computer I could be there three days and then it would go, I’d just konk out and I would go to sleep for 12 hours. So they took me off the Selegline and just had me on Mirapexine, I still go on the computer loads but not as much as I used to.

I’m just trying to think which one I went on next. They had me on Mirazapine which was to help me sleep and because I get terrible cramps in my legs, I’m on Quinine. We were on holiday in Crete and we were told about a lady whose aunty had Parkinson’s and she had terrible cramps in her legs and she used to drink tonic water, well I don’t like tonic water because it’s absolutely foul, so the nurse at the Parkinson’s Clinic said ‘well we can give you sugar-coated tablets ‘so you just take the tablets and that keeps my cramps at bay.

Then because of the Mirazapine, I was starting to have violent nightmares but she would start screaming and shouting in the middle of the night, Sandra would just about pooh herself so she would wake me up and when we seen the doctor next time I went on Clonazepam I think it is which is an anti epileptic drug but it stops you having, you don’t act out your dreams so that was the next one they put me on and then with the Mirapexine I’m taking, which is nine tablets a day I was having problems with my legs swelling, with the oedema in my legs so they’ve reduced the medication now down to two Mirapexine, three times a day and I take four Stalevo 100mg whereas I was on 75mg, three a day, now I’m on a 100mg four a day so that tends to level that out a bit. But I’m back at the hospital again next month, or December and they’re to have a play around with it again because they’re trying to get me on the slow release Mirapexine which doesn’t have the oedema effect in your legs.

I don’t work now, when I was driving an HGV wagon I found that I was tending to leave my foot on the clutch quite a bit. But the firm I worked for, I had the same wagon all the time so I could work around it and changing gear on my motorbike, I just used my whole leg because I still had my motorbike for a couple of years after I was diagnosed. The, it got to the stage when I got made redundant from the firm I was working for I went back on the agency and I was in different wagons all the time and I couldn’t find the righting point on the clutch, my leg would just freeze, so particularly as you lift your leg straight off the clutch and (inaudible – bang it … under a trailer) or press the clutch back down again and start again and I found it was that stressful that it was getting to the point where it was dangerous so I decided to see my doctor and he was a bit reluctant to sign my medical forms to say that I was unfit to drive a HGV; so we sent the forms in for that and the, I got the letter back from the Ministry of Transport saying that, not the Ministry of Transport, the DVLA saying that they were withdrawing my HGV licence but my car licence and my bike licence would remain the same, which I was quite pleased about ‘cos I like my cars.

And I went to see the DEA, the Disability Employment Advisor at the Job Shop and she said they were starting disabled people at which was action for the phone calls for people who had gas leaks or something the matter with their gas supply. So I went and I worked there for a year and then they decided just before we started there that they were shutting it like in a month’s time but it went on for a year so before they decided it was going to completely shut and I transferred on to assigning the gas fitters for all the different leaks which I found was quite stressful so I packed in working there and I was advised at the hospital because the stress was affecting my symptoms, to not, like obviously your health was more important than working for a living, so I went on to, I’d already got my disability living allowance for the lower one with care because I couldn’t like hold a pan, make a three course meal so I was on that one and as my cramps got worse and my stiffness got worse then we applied for the DLA, the higher rate and I got that and I got the mobility, so we had a little automatic car which we ran about in and my wife was still working so we were looking at, I mean we were having to pay the mortgage, we were having to pay the council tax, pay for the prescriptions and pay for all our other things so we went to see the DEA again and said if my wife stopped working, what would we actually get in benefits? And they wouldn’t tell us, they would tell us the other way around, they would say if you were on benefits and you’re going to take a job, they would work out if you were going to be better off in the job or not. But they wouldn’t work it the other way round if you were out of work and one of you wanted to like stop work to care for somebody, they wouldn’t tell you how much you would get.

So luckily my wife’s employer turned round and said ‘well take a year off, see if it works out; if it doesn’t work out then just come back to work as normal and we’ll just put somebody in your job temporary’ and within two months we literally worked out that we were better off because we didn’t have to pay council tax, I didn’t have to pay my prescriptions which was like four things a month, we got help with paying the mortgage, so that we didn’t have to sell the house and we actually got some income support. With the income support you got all the other benefits included; whereas if you couldn’t income support you literally had to pay for everything.

That was up to about three years ago and then since then it’s just been going back to the hospital but I actually, I’m the secretary of the local Parkinson’s branch. I started out as treasurer and then the year after that somebody else came on as treasurer and I went in as secretary, ‘cos we’re using a computer all the time, I can like, like I print out all the newsletters, do all the programmes and bits and pieces but I’m finding that’s getting a bit hard now so I’m playing with the idea of dropping that next year and letting somebody else take over as the secretary. We organise like Christmas lunches, we organise days out for the members, we have a lot of paperwork now which makes it a lot more stressful because since it became Parkinson’s UK, we now have actual paid staff in the North East and they’ve got certain targets to reach and you’ll get a clash of personality between one of the, I mean one of the members on the committee won’t like the way something’s going because we were told there’d be less paperwork and I mean now there’s more paperwork. We’re like, we were just in a branch development meeting and that was like 18 pages of paperwork so the, we’ve got two or three new members on the committee who are quite articulate and they, they’ll turn round ‘cos they used to think it was us working ourselves like because we didn’t want to do the bits and pieces but they can get, other people can get it across better so you tend to not just have one person taking all the flack.

But, last year I went to the Parkinson’s annual general meeting which is the first time I’d been to one. I’d been to one for the YAPPAS which is the Young Parkinson’s group in I think it was 2005 or 2006, I’d met a Parkinson’s UK worker and he invited us down to the Biannual, they used to have it every two years, they used to have like a general meeting. And my wife went with my and my wife like is horrified by the fact that I’ve got Parkinson’s that’s why she’s not here today ‘cos she’d rather keep it at arm’s length, whereas I tend to, if somebody’s, like if I’m talking to somebody I’ll tell them I’ve got Parkinson’s Disease, it doesn’t bother me. And, but when we went to the YAP meet, there was quite a few people that were really bad. And my wife is of the opinion when she looks at people like that, saying well what happens if I’m like in ten years time, how’s she going to cope. So she’s been to two Parkinson’s meetings, the first one was, it was one of the members of the committee’s going to dance school and they had all their kids doing the ballet dancing and what have you and I mean it will sound funny but my wife says, we walked in and there was all these girls dancing about in leotards and all these old people sitting there shaking, she says it was like going into a paedophiles’ meeting!! So she went to the tombola which was the next one but there was two or three people who were quite bad, I mean they’re not with us anymore, and she like tends to look on the negative side, whereas I’ll just poddle along my and it doesn’t particularly bother me. So she won’t go to the meetings now and she’ll like, she’ll not go to any of the AGMs or anything because there was one of the lads at the YAPMAC meet, he was just curled up in a ball with his legs and everything had gone so stiff and they would come in and put him in a chair and he was literally sat there all day and it like frightened her quite a bit ‘cos she looks like more into the future whereas I live more for today.

The, we’ve got a grandson who, he’s just turned four and he keeps me busy all the time so we’ve just getting him introduced to speedway because I used to ride speedway bikes years and years ago and we’ve bought him a little motorbike but he’s too, he’s slightly too small to go on it at the minute so we have to go on with him so it gives us an excuse to be on it. He can be a right worky ticket but it keeps you on your toes.

The latest thing is, I mean when I first got my disability living allowance for mobility we decided because we’d always had old cars, that it would, like it would be nice to have a new car where you didn’t have to worry about it breaking down or anything so we bought a Mitsubishi and we had for that three years and it was quite relaxing because you would go for a drive somewhere and we’ve got a caravan, so it pulled the caravan and you weren’t worrying, saying ‘what happens if something falls off it or whatever’ and at the end of that three year’s contract we thought well we’ve been paying £50 a week for this car, normally it wouldn’t cost us that much to run a car, which the cars before we’d had, we didn’t have a problem with, so we bought a Renault Scenic and it was low miles so we thought it was low miles and the, we, we ended up putting three tyres on it, getting some repairs done to it and then the timing belt snapped. So we worked out it was costing about £10 a week more to run our own car than run a mobility car so we decided to go for another one and I’ve just got a little Kia Soul there which is quite nice and we’re, they fitted a tail bar for it so it pulls the caravan whereas the car what I had before, I fitted the tow bar in and I found I was having loads of problems and where at one time I would think nothing of wiring in a tow bar and fitting it but I was having problems trying to hold wires with one hand, it couldn’t, wouldn’t do as it was told and you’re trying to solder wires and everything.

So I got quite a bit emotional and upset about that but normally I just get on with things I don’t have so much a problem as a lot of people where they can’t walk very far, I can, sometimes on a good day I can walk for miles, bad day, I’m stuck; but other people, their problems are every day so I’m quite lucky in mine’s quite slow progressing because I’ve been diagnosed …. seven years now and I’ve seen people who were diagnosed later than me and they’ve actually been wheelchair bound for more than a year now and they’ve; I mean there was one lad we had who had MSE which is very often diagnosed as Parkinson’s disease and he passed away at the beginning of this year but I mean we still see his wife because she’s on the committee. He’s quite a miss because he was one of our committee members. The, I’m trying to think what else. So I go to the hospital every three months and they twiddle about with my bits and pieces, think like my medication and what have you and what problems am I having and then I’m also involved with quite a few research projects; the PROMS Study, I’m involved in that and I’m on the PPI Panel for DeNdron which is neurological alliance, they deal with a lot of, where they set up the research projects, we get involved with them so that way I’m quite busy with that; my committee paperwork takes up quite a bit ‘cos I mean newsletters are usually eight pages, so I have got to design all them and everything for the branch.

But, I’m trying to think what else I can add to that? I mean all the house I did myself when I was first diagnosed, we put the kitchen and everything before I got too bad and we’ve also adapted the house by that door’s wider so if I’m ever in a wheelchair I can get through the whole house. I’m widening the other door because we couldn’t get it to open wide enough to actually fit it if we’d, thingied it, because these ones we didn’t leave the doors on, we left the doors off to make it easier for me to get round. I’m just trying to think what else. I mean I usually get all the jobs to do but they take us longer, I mean putting the kitchen in took us six weeks where normally it would have took us two weeks. And other bits and pieces like decorating and what have you, I can do if it’s on a good day but if it’s on a bad day it just gets left. That’s it. I mean we will be in the caravan on holidays so I don’t have a problem with that. The, we’re spoilt for a caravan because my brother just phoned us up one day and said would we like the caravan and we thought it would be some old, tatty thing and well you’ve seen it outside, it’s quite a nice little caravan. So we’re, basically we’re not tied to going away whether the weather’s wet or whatever because the caravan’s got heating in and everything and hot water so you don’t get stuck for stuff whereas in the old days it was a water pump on the floor and freezing cold water, you had to boil a kettle for everything!

The, I’m just trying to, what else to think, I mean we have meetings every month at the Parkinson’s branch so I organise all the, like the speakers or if we’re having like a sing-along because we try to have one serious meeting, one light hearted meeting and I like; everybody is on the phone every five minutes, ‘I’ve got something the matter with my computer, can you come and fix it?’ so I end up doing that. I’ve got one to do today and I’ve got one to do tomorrow. The, one of the little lads who’s the vice chair, he was computer phobic before I, I sold him a laptop which my wife had had and when she got her new laptop she was selling the old one, so now he’s worse than me for being compulsive on it so he’s getting into trouble off his wife, I get into trouble off my wife for spending too long on the computer but since my wife got her laptop she’s on it nearly just as much as me now. I mean I’ll be upstairs and we’ll play scrabble, she’ll be down here on her’s and I’m upstairs or I’ll be sitting with it on, my laptop on my knee and I’ll just be like that I mean we play scrabble with people all over the world and I’ve just had my aunty over from Australia and she, they were over for his new book so I can, now she’s back in Australia I can use Skype and I can speak to her and see her at the same time so that’s quite good but you’ve got to stay up in the middle of the night with it being the time difference. I found since I got diagnosed with Parkinson’s I didn’t drink a lot before but I used to when I was younger, but before I got Parkinson’s but since I’ve had Parkinson’s, it doesn’t bother me going out for a drink, I’d rather stay at home. But my wife’s family are quite supportive, they’re always asking how I am and what have you.

(Inaudible) well I see my sister quite a bit because she’s a pain in the backside, she’s always over wanting something or other and I see my wife’s family who just live round the doors more than I see my family ‘cos my sister who I get on really well with, she lives in London so I only see her when we go down there; my brother, he lives in Durham so I see him every now and then usually at funerals or weddings! That’s about the only time you ever see the family and my other family, they’re like wider family, live down in Leeds and down south so we don’t see much of them. I mean I’ve got another funeral to go to next week so that’s an aunt, my dad’s sister, so I’ll see all the family then and then it’s … I find with the Parkinson’s, it plays hell with your emotions, you can go to a funeral and not even know the person and cry your eyes out or you can go to your best friend’s funeral and be alright. You can sit and watch something on the telly and get all emotional about it even though it’s just a play. So I found that’s quite a problem I have with Parkinson’s, the, because people look at you like, think you’re daft. I mean I don’t have that much problem with my speech but some people, somebody in a pub will think they’re drunk or they’re, or will wonder why they’re shaking so much and the thing is, when we go out, we go out with a group of friends, we don’t have no problems with anybody wondering, like thinking you’re drunk because you either are or you’re not.

The, we’ve got one dog now which my wife takes out all the time, she has quite a few problems so I usually get dragged out to take her for a walk but half the time I’ll say ‘well I can’t be bothered’ if my legs are stiff or whatever. I ended up with, not a hernia but it’s where the muscle wall splits; so I went to see the doctor because I thought it was a hernia at first and he said ‘you’ve got to lose weight; go and see a physio’. And the physio didn’t have a clue when I went to see him, because she says ‘you need to lose weight’ so I joined the gym, well I found the gym was boring because you was sitting, running on a treadmill or you were, I couldn’t do weights because this thing would pop out and then we found out eventually what it was and it’s just something which pregnant women get and because I was overweight, the muscles had spread and the thing popped through. There was no, they didn’t operate on it and there was no health problems with it so I’ve now, now I go to the speedway on a Sunday because they race on a Sunday night but we have to cover up the dog track with plastic sheets, and it’s, so I give them a hand to help them to do that and I’ve managed to lose half a stone in the last six months so that’s not too bad. I play a lot on the Wii, Wii sports and everything, now the grandson plays on it more than I do but we’ve found the problems with the Wii was when you put say the step, where you do the step ups on, because with the Parkinson’s your leg wouldn’t do what it was told to do you would step on the thing, you were supposed to go left then off and like right and then off, your legs would move so you lost the rhythm so that used to get quite annoying. So I stopped using that and then when we got the Wii sport, the Wii fit plus the, it came and you could also alter the tempo so you could go faster or slower so I found that was easier so I can do now like 1,100 step ups in five, is it ten, fifteen minutes. Now, whereas on the other one you would go on for it about two or three minutes and say ‘I can’t be bothered with this’; same with the hoopla one which is supposed to be good for getting your, the midsection down. You couldn’t do that because you couldn’t go round and round because you would start, one leg would decide it wasn’t going to do something. I find the balance game’s good on it because you don’t have to move fast, you can just move your body about on the board, that’s quite good.

I’m just trying to think what else to put on there.

I don’t have a motorbike now, when I got the motability car my wife says we can’t have a car and a bike so the bike went; but it was a case of the bike was quite heavy and it was quite a big bike, 800cc and I found that when I was in traffic, you would get stressed because you were weaving through the traffic and everything and cars is coming from all angles, I used to get more problems with my legs, not being able to get my leg off the foot peg and one day I was going to fall off so it was just as well that I sold the bike. And like I say the grandson’s got a little motorbike now, he loves it, we have him up the Speedway on a Sunday before the race meetings and he’ll, I think he’s done more laps than I ever did at Brough Park now. There’s a couple of young lads up there and they’ll borrow his bike because they fit on his bike, they’re a little bit bigger than him so his bike gets quite a good run out. So I’m in the process of building him a proper, miniature speedway bike. So we’ve got all the (inaudible) and everything, it’s just a case of borrowing a welder off somebody and welding it altogether in the right shape, the right size for him.

But I keep myself busy, if I’m not doing something on the computer, I’m either in the garage messing about or making something or other because I’ve still got all my tools and everything from when I used to be a fitter. I don’t know whether I got Parkinson’s through all the chemicals we were involved in, I mean you used to think nothing of eating your sandwiches with manky, black, dirty hands covered in oil. I worked down the pits when I was younger which was, you were eating half your sandwich with coal dust. The chemicals in the, like car, I used to be a car mechanic and a bus fitter and you were like working with oils, fuels and you’d think nothing. You would get covered in oil and you would just work through to the end of the day and then get a shower when you went home. So I don’t know if that had something to do with my Parkinson’s? I mean there’s a lot of research now where they think it starts in your stomach, the problems, and then it gradually migrates up. Because from, since I’ve been diagnosed, I mean I basically know more than the average person now knows about Parkinson’s because I’ve looked at everything. I’ve done a couple of articles for the YAP magazine when it used to be out, one about riding a motorcycle and Parkinson’s and how you can convert it to a trike so you don’t have to put your feet down and the other one was starting at the beginning of when I first got diagnosed, was the ups and downs. I had a lot of problems with insurance companies. Then, just by accident I found out that I could claim on the critical illness insurance that I’d taken out on the mortgage when we moved into this house and it was only because I was on the insurance company’s website and I happened to be reading the bits and pieces when messing about on the computer and it came, Alzheimer’s Disease if diagnosed before the age of 65 and then along came Parkinson’s if you were diagnosed before the age of 65. So we went to see the estate agent who we bought the house through and he hummed and haahed and he says ‘well if they say no, they say no and what have you’ so he didn’t seem to be doing anything so we took over it ourselves to do it and we sent all the forms off and everything, the letters from the doctors and what have you and gave them permission to contact the doctors and I got a letter back saying ‘our medical panel have like looked at your case notes blah, blah we don’t think you have a definite diagnosis of Parkinson’s Disease; what you have is early onset Parkinsonism Syndrome’. So at the time I’d only just started going to the Parkinson’s, which was the Parkinson’s Disease Society then for the meetings and I was speaking to the chair then and she said ‘when you go to the hospital’, which was like a fortnight later, ‘take the letter with you and show it to the doctor. So I went down and I was like seeing one of the professor’s associates and he says, I says ‘well I’ve got this letter from the thingy saying I haven’t got Parkinson’s, I’ve got such ‘n such’. So he says ‘leave it with me, I’ll go and see’ the doctor. So the doctor came in and he says ‘insurance companies! There’s my contact details, tell them to write to me’. So two weeks later I got a cheque for £20,000 through the post so that sorted that out! I then, when I stopped driving the wagons, my driving licence was insured through the union so they decided I wasn’t using my driving licence at the time I was diagnosed; so I says ‘well I was working driving 44 tons artics; what was I using my driving licence for … paperweights?’ So they gave in and I got £7,500 off them so that made life a bit easier. We went to Egypt for our 25th anniversary two years ago, three years ago now and the difference when you are out there because of the heat, was your Parkinson’s symptoms were halved, it was the same when we went to Crete and it was hot. Because of the heat, I don’t know what it is, it’s something because the cold doesn’t like Parkinson’s, we had less problems when the temperature was high than what it was you came back here and you went, because you don’t shiver, you actually shake with your Parkinson’s and you’re freezing cold; but I don’t know. Is there anything else I can add to that?

Well if you could just talk about your medication, how important it is for you and if you’ve ever had experience in needing to take medication while in hospital.

Well I’ve never actually been in hospital since I was in getting diagnosed so I haven’t had a problem with that. The only like problems I’ve had with my medication was the Selegeline affecting my sleep patterns; then the Mirapexine I with my swollen legs. There’s a lot of people have problems with Stalevo but I’ve never had any problems with Stalevo, it just turns your pee bright orange so you can tell if somebody’s on it when you go to the loo. The Metazapine I don’t take all the time because I know if I’m going to go to bed, I’ll go to bed; other times if I think I’ve got to stop, I’ll take my medication before I go to bed, I’ll be on the computer within half an hour it’s a case of you’ve just got to go to bed because you’re going to fall over. If I don’t take my medication, like if I’m doing something, like say working on the car when we had our own car, the, you would know because you think, like your hands just would stop working so it was time to go and take your pills. But I mean I’ve got a pill timer and everything but I never ever take them on time because I’m supposed to take one at nine o’clock but I’m usually not out of bed at nine o’clock in the morning. The problems I had, the nightmares were controlled by the Clonazepam I think it is? So that’s caused that and I haven’t got that problem anymore so we’re just waiting now to see if when they changes us on to the slow release Mirapexin, if it stops my ankles swelling ‘cos when I reduced it to two tablets three times a day, one ankle decided it was going to go down but the other one hasn’t and you’ve just got to bump your leg and it actually breaks the skin, normally you would just like ‘oh it’s just felt as though I just scraped it’ and never had any problems but with the, with your oedema ) legs if you say bang it on the corner of the bed or something it will actually cut and break the skin. My quinine works great for stopping the cramps. I’ve also got other things which the physiotherapists have told us to do, like bend your toes back over and wrap something through your toes but with the quinine I haven’t actually had to do that. I’m just trying to think what else.

I used to, when I was on the Selegiline, I could just fall asleep anywhere, I mean it just depends if I’m a bit tired I can still do that but it’s nowhere near as bad as it was. The, I’m just trying to think what else, I don’t take any others, so I’ve gotmyMirapexin which is two three times a day; myStalevos, 100mg four times a day; me, on a night time I take one Metazapine, one quinine to stop the cramps and then the Klemazapine I think it is, which stops the nightmares and that’s basically all the pills that I take at the moment. And like I’ll go next, in the next couple of months when I’m back at the hospital they’ll probably change something and try something else as well. So we’ll just see ‘cos like each time you go they change it, try and tweak it a little bit ‘cos like I say everybody’s different, nobody has the same medication. ‘cos people come up to me and say ‘well, how do I take this one?’ I say ‘well it’s no good asking me ‘cos you need to speak to somebody medically trained, not me’.

The other people that I know who have had problems is like where people who are on patches, having trouble like concentrating; my concentration’s shot to pieces, I mean I’ll flit from one thing to another. I’ll go out in the garage to do something and I’ll come in five minutes later to ask my wife what I went out there for! But I don’t know, I’ve always been, my short term memory’s always been crap anyway. like you’ll be out in the garage and you’ll come in for something and it’s gone and you think ‘what the hell did I …’ (inaudible) go back to the garage and you stand out in the garage and then ‘ah I know what it was I came in for’; you walk back in, you’ve forgotten again. So that’s a problem with the Parkinson’s. The, when I first started on the tablets you get quite paranoid, I still do, I’ll go for something and I can’t find it, so ‘where the hell has my wife put that now?’ and it’s, you hunt all over the place, I mean I’ve put padlocks on things and thought ‘where the hell have I put the keys’; I’ve hunted the house for the keys. I’ve left my keys in shops. I mean I was at my friend’s car shop the other week, my wife had to go up on the Monday and my keys were sitting on the counter. I’m just trying to think what else; the problems I’ve had.

I don’t have any problem when I drive, like I’ve always been the same when I drive slow I don’t concentrate, if I drive quite fast I concentrate so but I don’t nowhere near as concentrate as much as I used to. I mean I’ve like raced cars, rallied cars, raced motorbikes and never had no problems with concentration like that but as soon as I start going slow I start to wander about which is pain with the caravan on because you’re sat at 55, 60 miles an hour with the caravan on but you’re that busy looking to make sure nobody’s, like wagons are overtaking you or anything. You tend to concentrate more that way. I’m just trying to think what else.

I mean the first thing my daughter said when my wife told her that I’d been diagnosed, which was, you know it was at her 18th birthday party, the, two weeks before I was diagnosed and people were coming up and saying ‘why’re you not getting up and dancing?’ Well you couldn’t move in time with the rhythm of the music because one side wouldn’t go, so that was a bit embarrassing. But the first thing she said when I got diagnosed, I mean she’s, 2003 so she’ll be 17, was ‘is he going to die’ (laughter) and she says ‘no, no it’s not as bad as that’.

And some of the things we looked at when we were waiting to go to the hospital to get diagnosed was, we’ve got you know like a disks??? free on the magazines and it was such ‘n such medical adviser and this that and the other so we were putting all the things in and it keep coming up with motor neurone disease which I thought was not very nice; but obviously when we went to the hospital then we were told it was Parkinson’s, the one thing that really bugged me was, you weren’t told where you could go to get help or find out about Parkinson’s disease, it was just this ‘there’s the door, come back in six months and we’ll see you in six months’. Now that’s been a problem with 99% of people, it’s one of the bugbears that when we were going to the PPI panel with DeNdron that we don’t get told ‘oh there’s a Parkinson’s disease society, they have all the information for everything and they’ve got, you know 600 leaflets you can get’ and you’ll get somebody new comes to the Parkinson’s and they’ll say ‘well they just told me I had Parkinson’s and that’s it’ and you think ‘well that’s the way it is’ I can understand why because talking to other people, they’ve said ‘well they’d rather give you a diagnosis of Parkinson’s disease than something like motor neurone disease or something else’ so it’s, I suppose it’s more of a relief but the thing is, if they give you a load of information, you would just put it in the bin. But if they just says ‘well this is a contact number for if you want to speak to somebody who’s got Parkinson’s or is involved with somebody who’s got Parkinson’s or like cares for somebody with Parkinson’s’ they can get what their take is on the disease. So that’s why when, now when new people come to the Parkinson’s I’ll say to them ‘if you need to know anything, my phone number’s there so you can either phone me up or you can phone the thing up or you can phone the help line’ but the help line is down in London so it’s basically somebody just listening to what you’ve got to say, they can’t really like one to one with you where we can at the Parkinson’s, at meetings.

I know all about deep brain stimulation, we’ve had a nurse in talking about that and I’ve had three friends at the Parkinson’s who had it done. one had problems, he got infected so they had to take the electrodes out and put new ones in. another lad was really bad and then he was quite good once he’d had the deep brain stimulation done but now he’s starting to drop off again, he doesn’t come to meetings anymore now because he’s quite bad. And there was a woman who, she was keen golfer but she’s stopped playing golf because of her Parkinson’s, she had the deep brain stimulation done and now she’s got a handicap of eight on the side of the, like on the golf side but the thing is with the drugs and that, that are coming through, you’ll go to these like seminars which we’ve just been to one in Glasgow with the congress and you find out that it’s taken like ten years for a drug to be developed so there’s drugs that are being developed like now; we’re not going to see them for another ten years and then you’re going to have to fight with your neurologist and what have you to try and get them. Whereas at one time the neurologist just wouldn’t tell you about them, now you find out about them, you go and see your neurologist and say ‘well what about this one’ and it’s a new drug so they don’t want to give you it because they’re not sure if it’s been tested enough or; so now they have a thing which is like shared responsibility whereas you share the responsibility of, because if the drug’s going to give you cancer but they don’t know about it yet, then you could turn round and say ‘well you used to prescribe me this drug and it’s now given me cancer’ whereas if it’s a shared thing between you and the doctor’s, they can say ‘well you asked for it’ so therefore you can’t, it basically takes away the worry that the doctor has of being sued for like giving you something that’s given you something else. I don’t know what else I can add to that?

Just anything else you want to contribute?

I’m quite happy not working; it gives me time to do most of the things that I wanted to do before. I mean we can just, at the drop of a hat, we’ll be in the caravan or whatever. My wife tends to dote on the grandsons though and basically she’ll say ‘well I’m able because my daughter works with handicapped and she takes them out on a weekend and that’s when we have the grandson, most of the weekends, so it’s quite hectic in here on a weekend. The, during the week it’s quite quiet, I’ll just poddle about doing bits and pieces and I’m usually backwards and forwards in the car, dropping paperwork off, picking paperwork up. Or I’ll pick somebody up because it’s cheaper for me to go and pick them up than it is for ringing a taxi for them. I’ve joined a photographic club with one of the lads from the Parkinson’s who, he’s quite bad now, so I’ll go down with him and we do like photo competitions and bits and pieces like that but I’m not one of these with a big, massive camera, I just use my normal one that I bought when I retired. I get a small pension from the company I worked for, but the government just takes that off you in your benefits anyway and then when my wife got her pension they did exactly the same; like we’ll get £6 a week off the pension so they take £6 a week off your money so you’re no better off. It’s saving your money whereas they keep saying ‘ah everybody should have a pension’ I mean I just got into it because it was a union thing, with the firm I worked for although I was only there four years I transferred my private pension into their pension fund and even the lad who had started my private pension said it’s the best thing I could have done ‘cos the pension money I get although it doesn’t make any difference to my thing, my income support because that’s set at a level where you’ve got ‘x’ amount to live on, anything above that, they take it off you. I’ve talked about my DLA. The new thing that’s coming in with the Government’s got a lot of people worried now; with where they’re assessing you for employment and saying if you can stand up, you can sit down, you can sit behind a desk or you can sit behind a counter so you can go to work which I don’t think is going to work because they’re putting everybody out of work anyway! But it’s causing quite a few people to have worries about when they go to see them if they say ‘oh you’re capable of work’ they, it’s not so much they change the way around that you have to go looking for a job because you can go every day and look at the thing and say I’ll apply for that job, I’ll apply for that job, I’ll apply for that job but the, it’s, if you’re getting DLA they’re going to say ‘well if you’re capable of working, why are you getting DLA?’ So I mean it’s, it doesn’t, I mean people, they’ll ask me if it’s me who’s got Parkinson’s or my wife, ‘cos I don’t have that much of a tremor; but they don’t see me on the bad times because when I go to the Parkinson’s I’m already g’d up anyway and I’ve got to take that much stuff up with us ‘cos I keep, like all the laptop and all the AV equipment here that we’ve got, I’ve got all these slide projectors, and projectors and they all stay here so when I come off the committee somebody else is going to have a garageful because I’ve got all the fund raising equipment here. I suppose if I didn’t do work for the Parkinson’s Disease Society I would just be messing about on the computer anyway doing other bits and pieces but it just gives me … and you’ll go to a meeting with other chairs and other secretaries and they’ll see ‘oh we do four hours a week’ and I think ‘well I do about 40 hours a week’ rather than just sitting about I’ll go upstairs on the computer and I’ll design next year’s, I’m in the middle of designing next year’s programme now. And I’ll spend a good 100 hours on that, just getting everything right and contacting everybody, sending letters out to ask if they could come as speakers and what have you. Like I say my medication, every time I go to the hospital they change it slightly but I’ve been one of the lucky ones I haven’t actually had to go into hospital where the nurses would give you the medication when they came round, with Parkinson’s, you know when you need it so that can be a problem for some people. But I haven’t actually been in hospital so I haven’t had that first hand. I’m just trying to think .. what else?

My pills, I usually keep my pill timer and it bleeps but I usually ignore it because I’ve had them too late before so it’s not really an advantage having them as a beeper and the only thing is I can tell if I’ve taken them because I’ve got five compartments so you know ‘oh I haven’t taken my dinner time ones’ but usually an hour after you’re supposed to take them I’ve found, I’ve started to go off so I know that it’s time to go in and take my pills. Apart from them problems I don’t have any other problems with the medication. I just, they say ‘take it’, I take it and if I get problems I’ll just phone them up. Just trying to think what else.

I’m just involved in research on the difference between MSA and Parkinson’s ‘cos they’re, one of our members who’s just recently died, he had MSA where he was originally diagnosed with Parkinson’s disease because they present the same symptoms and then he was told that he had MSA and they had only given him like ten years from diagnosis; so basically they took it from ten years from when he first got diagnosed with Parkinson’s and I think it was seven years and he died. So he’s quite a loss because I quite liked him, he was, I mean even though he was really seriously ill, he would always have a laugh and a joke. Whereas you know, you get some people ‘ooooh I’m having problems with this and I’m having problems with that’. I tend not to say if I’ve got problems, I mean I’ll go to the hospital, if I go by myself I’ve literally got to take my wife to remind us what to say ‘cos by the time I get to the hospital I’ve forgot what I’m going in for! The, because with the sleep problems, she was, it was affecting her more than it was affecting my ‘cos I was asleep, I didn’t know that I was jumping all over of the bed! I’d wake up in the morning, absolutely wrecked, you’d think I’d done a marathon!

But a couple of times when I’ve just gone up by myself, I’ve basically just will say ‘well are you having any problems with this and that?’ and I’ll say ‘no’. Just get on with it. I mean my own doctor when I first got diagnosed, he says, like I went down to see him, he says, ‘oh blah, blah, blah’, and then says, ‘well you seem quite upbeat about it’ and I says, ‘well there’s nowt I can do about it’. I says, ‘I’ve got it’ I says, ‘I’m stuck with it’ so he got quite miffed and he says, ‘well there might be something we can do medically to like make it easier’. And I thought well, you just try the pills and if they work they work and if they don’t they don’t, you just change them round. So I ended up with a cupboard full of pills! I need my shopping bag every time I go down to the chemist ‘cos I get them every month. I mean when I first got diagnosed, when I was having to pay for my prescriptions I asked them if I could have three month prescriptions and they says, ‘no the most we can do is two months’ so you were basically getting four lots of pills every two months which was costing us like £35 a month so, but I don’t have to pay for them now.

I mean basically if you’ve got diabetes, you don’t pay for your medication, you get prescriptions. If you’ve got, I forget what the other one is, but there’s something else where you, it’s a long term illness; well, Parkinson’s is long term, you don’t get better from it. It’s like if we have somebody in hospital, we never send them a ‘get well soon’ card because even if they’re not in for their Parkinson’s, they’re still not going to get better from the Parkinson’s. We’ll send them a ‘hope you’re feeling better’ rather than ‘get well soon’ because it basically, I would think ‘well why are they sending us a get well soon card when they know I’m not going to get well?’ But it’s not the Parkinson’s that kills you it’s something else usually. That’s about it.

Alright, ok, thank you very much

Mary’s Story

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At the moment I am a very, very unhappy lady. I’m unhappy because I cannot see. I cannot hear. After a very active life, and a life whereby I lived very healthily – I lived… I was a very, very keen golfer. Did all my exercises. Ate the correct foods and hoped for a very health old age. Unfortunately, since I have age related ___ degeneration, all my hopes have gone to the… Gone. And I’m very… I feel that my life is only an existence now. Due entirely to ___ degeneration. And the fact that we do not appear to be making any progress as far as, err, treatment for ___. (Pause) Until I was… It’s now… (Pause) About what? 19… 1998. When I first had trouble with my eyes and very rapidly they deteriorated because of ___ degeneration and now I am completely blind. I can’t tell the difference between light and day. But after living a very active life and a very, um, active professional life, to come into this sort of life where one cannot see, one cannot hear… And where society gives you very little attention. I get a same load of rubbish through my postal service as everybody else. And even when the writes to give me a 6 monthly, um… (Pause) A six monthly, er, consultation, they send it on paper. On a little… Tiny print. And I cannot read it. I have nobody – all my family are dead. I really did feel that I was saving up for the pension, etc. for a good old age and I find that my old age – because of ___ degeneration – is nothing but an existence. I do have carers come in. And I must say that the carers try – most of them try – but… (Pause) It’s… It’s a very, very poor service. Through Social Services. I have a carer comes in in the morning. And to be dressed like a baby is an insult. My brain, because of… I have a pretty good, active brain and I can lay claim to that. And I feel that my brain, now, because of lack of use… You know, the old adage – if you don’t use it you lose it. And my skills have gone. I cannot prepare a meal. I cannot even pour into a cup. My hands are so arthritic, I can’t do anything. And this, I’m quite sure, is because I have not used them. You know? I’ve lost the skills. And I sit for hour and hours and hours, entirely on my own. My brain – which was good, excellent (pause) is deteriorating. My memory is deteriorating, merely because I can’t put more facts into it. I am totally depend… I can’t see television like anybody else and I spend long, long, lonely hours by myself. With nobody to talk to. Even my voice is being affected for lack of use. (Pause) And I… There was, I believe that in the North East – with the two universities – Durham University ___ department, Newcastle University of ___ department, they got together calling themselves “North East Care”. Especially looking into, urm, (pause) as to what they could do for older… ___ troubles and older people. And I haven’t from them for a long time. You know, this is what’s happened. We appear to be put into a category where, “You can’t do anything for that.” You know, “Just keep them alive as long as they live.” And that’s exactly how I feel about it now. And I feel very, very distressed. A – I think Social Services don’t look after older people. I have not seen a Social Workers… A Social Worker for months now. Nobody bothers to see how you’re getting on or anything else. I find it difficult to use the telephone. (Pause) Because my hearing is now affected. If I can’t absorb things it would appear that the hearing becomes affected. And I’ve nobody to talk to. The voice is being affected. Instead of having a strong voice as I used to be – I was Chairman, urm, of the… The Speaker’s Club. The Newcastle Speaker’s Club. At the University. I was, um, (pause) president there for a long time. And believe me, to think that I could address a public meeting at one time – and now I look at myself, a wreck. And a wreck entirely due, in my opinion, to age related, neglected ___ degeneration. Neglected by Social Service, neglected by research. And if anything can be done at all… (Pause) If there’s anything going on, please let the patient know so at least they might get a bit of heart. If not for themselves, at least that it’s not going to be an ongoing trouble for younger people coming up. It really is a serious situation. (Pause) What else can I say? I’m very active… I’m still active in meetings. I am a member of the committee of the Elder’s Council. And I am on the committee on the, erm, Quality of Life in Newcastle. The Council has helped us as far as money is concerned. And I do attend the meetings. They do send a taxi down for me to attend the meetings. And I, all the time, I talk particularly about the older people in Newcastle who are on their own, living alone and are very, very… (Pause) What can we say? It’s just an existence, really. And they are neglected. There’s no two ways about it. We are not getting the attention that we need. There was, at one time, as far as Newcastle’s concerned… (Pause) Erm… (Pause) Erm… A girl used to come from the West End and took me out once or twice. And then she said that she couldn’t come back and that was the end of it. Nobody bothers whether you’re out or in, as long as you’re still alive. And that’s all. I do have this Care Call thing for round my neck. And if I fall down – which I have done several times – press this. Kept into hospital for a while, sent home again, and the existence just goes on… And I am – I really feel that I don’t live because I was, as I said, I lived a very active life. I had a very good, professional position in charge of schools. (Pause) And everything was snatched away from me as soon as the ___ degeneration developed. And it’s a very, very sad situation. I do plead that people who get ___ get more attention because I feel that we all feel we are very much neglected. We are not… We’re just… (Pause) Er… We’re… Let me point out as an example, when I go to these meetings I can’t hear. And people talk very quickly nowadays. And use a lot of initials when they address… Talking about various societies. I don’t know what they are. I’m left… Really left stranded. Only when, er, blind people with ___ are, er, acknowledged. Or talked about, then I come in and demand – as I’m trying to do now – demand that something is done to try and find, to help these people. (Pause) I cannot make a positive suggestion because, of course, this is not my line of profession, but it would be wonderful if more time was spent. If Social Services gave a little more attention to the seriousness of blind people. The trouble is, of course, if you have ___ degeneration, it isn’t obvious and it isn’t a quick killer. I think about things like cancer of the lungs, where people have… 70% of the people who get cancer of the lungs are heavy smokers. They have at least contributed to their illness. But to get ___ degeneration, it’s just because you’ve got older. And surely to goodness sake we’re not now going to be punished because we get old. (Pause) I Could I ask you to reflect on how you manage your daily life on your own? R Yes, right (simultaneously). (Pause) As far as every day is concerned – everyday living – I do have a carer who comes in on the mornings at about 9:00 or 9:30. And she’s with me for an hour while I have a shower and she makes breakfast. She looks at my clothes and sees that they’re not spotted or stained in any way. And then, (pause) erm, (pause) if they are she washes them once a week. It is a very, very poor service in so much as you don’t have a regular carer. And one person could come one day and she can, er, do just what she can fit in in that hour and a half. And then that is the end of it. She does not, erm, (pause) do any of it. Somebody else might come tomorrow and not know exactly what’s to be done. If Social Workers could have a regular carer… Who could be a regular carer, it would improve that service enormously. I do have somebody who comes back again at tea time and warms up a cooked meal. You know, one of these frozen meals that you put in the microwave. And I do believe, also, that erm, (pause) that they are not very healthy meals. They are not very good meals. But we just have to, you know, put up with them. Some of them are very poor indeed. What else can I say about my daily living except that I sit for hours and hours on my own? Erm, the doctor comes and sees me once in 3 weeks. (Pause) But I sit for hours… The only treasure that I have in my life is my little **** cat. And in fact, I’m, I’m a bit obsessed with my cat. He is my pet. And I would have liked to emphasise that fact that when disabled old people living on their own could have a pet… It’s a great solace for them. And I don’t think anybody bothers very much about helping out the… Looking after the pet. I think I would like something a little bit… A little attention paid to the pets.

Alfie’s Story

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I’ve been involved with this university for a couple of years as a user / carer. I often get involved in talking to students of various nominations, i.e occupational therapy students but Alfie’s now 10 and I quickly became a member if you like of this new world of disability. When Alfie was actually two years of age, because he used to see a certain paediatrician she asked me if I would like to go to the University of Durham, Queen’s Campus to talk to first year students who were students to become our future doctors. So I did that for five years and it was five years consecutive, talking to the first year students but what was lovely was I came back each year, some of the students from the year before used to come along to see me and Alfie, and indeed his big sister Helen. So if we go back, what my story basically is, is around Alfie and the prenatal aspects, the birth and the couple of years following his birth.Basically, right Sam was 17 months old when I fell pregnant with Alfie. With Sam everything was absolutely spot on, same as Helen, perfect pregnancy, breastfed, everything was absolutely fantastic. With Sam in fact I was home within four hours of giving birth which was great. Because of my age, I was 49, sorry 39, (I’m 49 now!) 39, me and my husband did want two children but time wasn’t on my side so of course we went about it pretty quickly i.e the close age gap. So I fell pregnant, went to see a midwife who offered me the routine blood tests which has no effect on the baby, no effect on me, so I agreed to it. I thought ‘well it’s not like the amniocentesis where there is a risk of losing that baby’ which I didn’t want to take that risk of losing a healthy baby and having to go through all, you know, get pregnant again and all those awful three months where it’s absolutely horrid, where you feel shattered and tired and yeah, it’s quite hard those first three months of pregnancy. So anyway I went off to see my midwife and I said ‘yes, I’ll have the routine blood test’. ‘Oh’ I said, ‘if there is a problem what will happen?’ She said ‘oh, I’ll come knocking on your door’. So I thought ‘oh nothing will happen, Sam is only 17 months old, he was a fine, I’m a healthy lady’ anyway a couple of weeks later, after the blood test and time was getting on at this stage, I was probably getting on for half way through my pregnancy, just starting to feel pregnant, feeling well, getting that little bump, planned to go out shopping with my daughter and a friend, and the knock came on the door. And I looked and there was my midwife and I thought ‘oh heck’ – I remembered now she said ‘if there’s a problem, I’ll come knocking on your door’. So, I answered the door and it was obvious that it was going to be sort of bad news, my daughter was upstairs with a friend, midwife came in, but basically I was left standing in my hallway and she said ‘oh the results have come back, there’s a 1 in 20 chance that you’ll have a baby with Down’s Syndrome. I’m really sorry, it always happens to the nicer people.’ And straight away I felt ‘oh heck, this is so negative; this is so serious’ because I didn’t have a clue about Down’s Syndrome. Just I’d never grown up with anybody with any disability to be fair. Anyway as I say, I really had the wall holding me up and eventually we went through into the room, I sat down. She said ‘well would you like to ring your husband blah di blah’ which I did. BUT, in hindsight I didn’t realise that Helen upstairs had heard everything – ‘cos we were stood in the hallway and I wouldn’t have wanted her to have heard that conversation because I did in fact keep that 1 in 20 result from most people including family, most friends, so I was quite upset later on that she’d overheard that conversation and even though she was 11, she did understand because they teach things about birth and what have you, you know sort of first year seniors.So, anyhow she went, I phoned my husband but what she had said which did frighten me as well was ‘oh but I booked you in for an amniocentesis tomorrow’. And I thought, I’m sure in an earlier conversation with her I said I don’t want any sort of tests that might affect my unborn baby. Anyway, when Mark came home, my husband, he said, ‘well we’ll go down and then we’ll know one way or another’ but certainly with no intention of aborting the baby basically. So, I agreed with him. So I thought ‘well, I’ll go down’ even though I really didn’t want to have this test, but then we’d know either way and we could prepare a bit better. Anyhow when we went down to the hospital, thankfully I spoke to a doctor, she was a female doctor and she sort of spoke to me and she made me think about both sides of the sort of coin really. Instead of it being all negative ‘oh have the test, then you can get rid of this baby because it’s got Down’s Syndrome’ which, at the time I thought must be the worst thing in the world. Anyhow so she, she didn’t talk me out of it, but I said ‘actually I don’t want to have it, and we’ll be happy, going through the pregnancy and seeing what’s what’. So I left the hospital thinking ‘YES, I haven’t had that test, I’m not going to lose my baby’, but then I thought ‘hang on a minute, we’re still not out of the woods, because we’ve still got the rest of the pregnancy to wait’. But I did try to put it to the back of my mind and people, like my husband would say ‘well, if there’s a 1 in 20 chance, why should you be that one person?’ You know if there’s 20 people in a room, if you work it out, it works out – is it 5% chance? So I thought, probably won’t be me, well I hope it won’t be me, to be honest.

But there was still those doubts so I went to the library, bearing in mind that Sam was just a little toddler still. While he was asleep in his buggy, I looked up a few sort of reference books in the library which were ancient, again really, really negative and I just sat in the library and just cried. And then I went home, I had a really, really lovely neighbour called Fay and she was like a mother figure really. So I told her, and again it was all negative ‘Oh, Linda I couldn’t bring up a baby with a disability. I work in a post office and there’s people that come in with disabled children and they look haggard, their life is ruined.’ And I thought ‘oh heck’ but I’d already, me and my husband had made our minds up that we were going to continue. And it was hard. The rest of the pregnancy was hard.

Anyway to sort of move forward to the birth, it was, wasn’t a long labour, it was uncomfortable as labours are, went into the hospital. Soon as Alfie was born basically, we knew. Don’t ask me how because I’ve never seen a newborn baby with Down’s Syndrome, but the atmosphere just told us everything. I think, I don’t know about everybody who’s in labour but once I’ve had the baby, you go into a bit of a shock really. And all I noticed was no sounds, no smiles, my husband went over to a window and he was, well he was crying basically but while I was in labour I said ‘Oh M will you tell me when the baby’s born if everything’s alright?’ He said ‘well how will I know?’ ‘Cos at the time you don’t think you will, but in actual fact as soon as Alfie was born, the atmosphere just told us all. ‘Cos I mean the midwife knows more than I do, and obviously he was much more floppy, he had those characteristics that, I don’t know, I probably wouldn’t have recognised because I’m not in that field. So the atmosphere was just awful and I went into I think a worse shock really, thinking ‘oh God, how we going to tell people? How’s the rest of our life going to be?’ and sunk into a depression really. So we even had thoughts of moving to New Zealand to avoid people because we just thought it was that bad. I don’t know, it’s just all sorts goes through your mind. You just sort of think that you’re one in a million, but you’re not, when you learn more.

Anyhow, we brought Alfie home after about three days in hospital. And looking back, it’s still hard, even ten years on, looking back because I had feelings, such awful feelings of what I’m going to tell you next.

Basically I’d breast fed two children very well, for six months, maybe a couple of months more; with Alfie because I didn’t know a lot about Down’s Syndrome, I thought he was feeding OK, breastfeeding and again not knowing much about Down’s Syndrome, Alfie slept a lot so I did my best to feed him fairly regularly but he just seemed to want to sleep and people were saying ‘oh God, you’ve got the ideal baby, you’re so lucky, don’t complain’ and a part of me thought ‘this isn’t right’. So in the middle of the night I was setting my alarm to wake him up to feed him and I honestly could have picked him and dropped him on the floor and he wouldn’t have woke up. So I just thought ‘oh that’s Down’s Syndrome.’ So anyhow of course you have your daily visits from your midwife and I said to her ‘well that pile of nappies there isn’t going down. He hasn’t had a poo’ …. ‘Oh don’t worry it’ll be low muscle tone and or it could be constipation, so don’t worry.’ So everyday I’d mention it again, ‘he doesn’t seem to be weeing much and he hasn’t had a poo again’ and me saying that didn’t seem to acknowledge that there could be a problem there. Because looking back I think ‘well, how stupid that I didn’t put two and two together. If there’s no wet nappies, obviously there’s no fluid getting in him!’ You know, my milk wasn’t getting, he wasn’t suckling like I thought he was.

Anyway, thankfully on day 11, the health visitor comes on the scene. And I knew this health visitor from when Helen was a baby because she was the same health visitor and she’s a lovely person, obviously experienced in her work. And when I told her my tale, I think she could tell by looking at me anyway, because a woman who’s breastfeeding, her boobs are absolutely full basically and she could probably tell that mine weren’t. And she said ‘Linda I want you to straight away start expressing milk’ so I thought, ‘right, I haven’t got an expresser but I’ll get one off my neighbour’. So I quickly, can you, ‘I need to express the milk, have you got a machine I can use?’. She said ‘yes’ so I started but not a lot was coming through because this was day 11, I’d not really breastfeeding successfully and the milk wasn’t, you know it ‘s like a supply and demand effect. So she said ‘start expressing every two hours’ which, if you think I had two littlies, little Alfie there, fair enough he was sleeping a lot but I had Sam as well who was 17 months. So I did my best to get things rolling. I thought ‘blooming heck, this is serious, something’s not right’ anyhow my health visitor rang me up later that day and she said ‘Linda’ oh ‘cos she had said she would arrange for me to go to the doctor’s. She said ‘I’ve arranged for you and a hospital bed, I want you to go down there straight away.’ So we went down, bearing in mind at this time Alfie as I say was sleeping a lot, there was a blue tinge round his mouth, which meant nothing to me, to be fair. His eyes were really wrinkly, like dehydrated it would have been, I didn’t know at the time, I just thought ‘oh it’s just this thing called Down’s Syndrome’ but looking back it all started to fit into place that ‘blooming heck, that wasn’t a well child laid on my settee.’ So we went down to the hospital, consequently we were in there for 12 days, basically feeding him up and getting him well. I don’t know the exact what’s in his notes, but I would believe that he wasn’t well at all and I think if my health visitor hadn’t come on the scene we could have lost him, I really do.

So in the hospital, were you and Alfie together all the time?

Yeah, yeah. We were together all the time. I had to go down into the intensive care baby unit to use their electronic machine to express milk. So for those 12 days in hospital, Alfie was being cared for, very well. I felt that my needs were sort of ignored, I was just a mum. And I started to get quite paranoid in hospital because I was in a little room on my own with Alfie. Every time I heard people laughing, I thought they were laughing at me. When I first went to express some milk there might have been an ounce there and I thought ‘blimey that doctor’s just tutted, how bad am I? What a bad mother I must be.’ I felt totally inadequate basically. Anyway, and what was awful was the fact that nobody mentioned the word Down’s Syndrome. I was Mum, Alfie was ‘baby’ and I thought ‘do people know?’ I really thought that people didn’t know. And I don’t know I just had awful, I was thinking ‘oh people are laughing at me because of my age and oh they’re laughing because ‘she shouldn’t have been having a baby at her age anyway’ and all these things, honestly were going through my mind and it was awful.

And after about a week a doctor came in and he asked me ‘how do you feel about having a baby with Down’s Syndrome?’ And I thought, and it made it real then. And I said ‘well, to be honest I’m a bit unsure about my future’. And he said ‘well nobody really knows what’s round the corner and life isn’t easy for any of us’. And I thought ‘well I know that because, you don’t need to tell me that!’ Anyhow he suggested writing things down. He said ‘have you thought about writing things down?’. So I did, so I started to keep a little journal and I wrote a letter to a magazine. And I wrote to the Gazette about my experiences. And it was the health visitor who sort of, I think to take my mind off it a little bit, she said ‘Linda why don’t you think, there’s nothing out there, why don’t you think about setting up a support group?’ So I wrote to the Gazette about my tale – that was publicised. And then suddenly I thought, I was on that sort of, not a roller coaster as such but like a treadmill of learning more about disability and accepting it.

And then with the breastfeeding I was absolutely heartbroken that I wasn’t breastfeeding and then this other trainee doctor came in and he was lovely, he had a sense of humour, he made me feel quite normal and he said ‘oh my wife had a problem breastfeeding’. So that made me feel ‘oh there is other people have problems out there, whether they’ve got a child with Down’s Syndrome or not’. And he said ‘oh all she did was express milk into a bottle and then the baby, instead of getting formula was getting her milk.’ And I thought, ‘well why didn’t I think about that or why didn’t anybody sort of suggest it?’ So simple. But when you’re sort of in the thick of it and you are depressed or you are grieving or you are, you know, just going through that emotional, it was awful really. And just the simplest things, if they’d been suggested would have made such a difference. But I think sometimes people presume that because you’ve had two children already, that you know what you’re doing. And that isn’t the case, because having a baby with Down’s Syndrome is a total different kettle of fish. i.e they do have low muscle tone, I know that now, and that includes the mouth! It’s not just the limbs, you know it’s everywhere, it could be the tongue, it could be anywhere.

Anyway, going back to the midwife who I was quite disappointed in, she would come and visit for those first 11 days and before I told her about the nappies she was saying ‘oh hi Linda are you alright?’ Well me being as I am, I would say ‘oh yes, fine thank you’. But surely nobody would be alright if you’d just given birth to a child with a disability, you’re not going to be alright, I don’t think. But I pretended I was and I think with me saying that, she thought ‘whoof, I’ll just get on and talk about me own children, or talk about the weather instead of about little Alfie there being this model, perfect baby, just sleeping.’

And I must admit, what I wouldn’t do, going back in time is have as many visitors. You know you feel dead popular and it’s lovely people wanting to see your baby and, but it’s so time consuming and it’s tiring.

So do you mean professional visitors?

No, I mean friends

Friends as well?

Yeah, yeah. I would, you know because people do – whatever your child, whether it’s born normally or with a disability or illness or whatever, you get that many visitors the first few days or weeks, then it all stops! So I would much prefer, if it was my own daughter for instance or anybody is – spread out your visitors, don’t have them one after another, just in case there are any problems. There might not be but just in case, because that takes up your time and I remember one friend afterwards saying ‘eeh Linda when you went upstairs, I actually went over and prodded Alfie because I wasn’t sure whether he was alive.’ So that’s how still and quiet and different he was. (I’ll just look at my notes)

Fine

So anyhow, moving on, when Alfie was about two, that’s when I started doing my talks at the Durham University. And I think it is very useful to talk to professionals from my perspective ‘cos I’ve been there, I’ve had the t-shirt, still wear the t-shirt. Anyway, as time went on, as I said Sam was diagnosed with Asperger’s Syndrome. Alfie at the age of four or five was also diagnosed with Autism, so in effect I’ve got two. I’ve got Helen who’s a young adult, I’ve got my two boys who are like kids from different planets. Absolutely, one at the able end of the spectrum and one obviously with severe learning difficulties and severe autism. So family dynamics are very, very difficult. And I wish sometimes that professionals, and not just social workers, but I wish they would understand more about what life is like. Not just the little half hour snapshot because Alfie is beautiful, he’s endearing but he’s hard work – because he has got a little bit of hyperactivity as well. He’s ten, he doesn’t speak, he’s non-verbal, he’s still in nappies day and night and very, very dependent and probably always will be – which, you know, we accept. But what would be lovely would be to have more support and more understanding from professionals. I can understand, being honest, why marriages split up and I can understand why, when I see in the newspapers and on the news, parents with the children, might go to a bridge and throw themselves off. And I’m only being honest but I can empathise with them because it isn’t easy and people just do not understand. A lot of people are very presuming. For instance, I do live in a nice house, it’s not a mansion and I’ve worked hard. We’ve got a nice house, I’ve got a lovely husband but that doesn’t mean everything’s OK inside them four walls. It really doesn’t. And it doesn’t mean because Mum might be like smiling, might be positive that things are alright because if you read between the lines or have the time for a conversation, people would realise that it just isn’t, it’s very hard. And there is support networks out there but what does support mean?

That’s right yeah, it’s one of the things I was going to ask you actually, is you mentioned when you went into the baby unit first with Alfie, like you said, you know there’s mother and baby and there doesn’t seem to me much meeting for the mother’s needs

There isn’t

Yeah, but what sort of needs do you recognise …….?

What I passionately believe that parents should be offered such as ourselves at the time ten years ago, is some sort of listening service for the mum and dad, and siblings. It’s optional, it’s that you know it’s there for when the right time is, because nobody knows when the right time is for advice and information support; but it’s good to be aware of the way, somebody can signpost it when you’re ready. For instance when children have a genetic condition I believe that they’re automatically given the option of some sort of listening or counselling or whatever you want to call it, but with any other condition, there’s nothing like that offered. You’re just left, you get the label, go away, get on with it. If you need any support, refer on to a social worker but there’s no real support

M Support would be things like information?

F It would just be, I mean if I went to a support group and I’m on the committee of a support group and I’m really proud of it. But if there’s a lot of you, you don’t often want to talk in front of a lot of people about what your day’s been like or … I mean that happens more in a one to one. But in a support group, it’s a group – so there’s not often opportunity to have somebody there where you can just go in to another little room and say ‘look, this is how I’m feeling; are these feelings normal?’ Or it could be somebody in the group who knows where to signpost. Because I’m on this support group but I can’t, I haven’t got the qualifications to literally counsel somebody if you like, but I know that I can signpost them to somebody. But back then when Alfie was born there was nothing like that, there was Down’s Syndrome Association in London and I think there was one in Newcastle but that was the

M It’s quite limited really

F so quite limited. There’s more now, thankfully. So yeah, I think other family members must be taken into consideration not just that, the person with the label. Because at the end of the day he was being looked after, he’s none the wiser, he’s a baby but everybody else, I mean poor Helen, she must have thought ‘well hang on, me Mum’s pregnant, why isn’t she mentioning to me because I’ve overheard the story but Mum hasn’t mentioned that my brother might have Down’s Syndrome’. And when he was born, he was just a baby. And he was.

M I mean it was interesting what you said before about when the midwife came round and knocked on the door with the results and you said you didn’t want to sort of like tell your family and friends. What was the decision behind that – was it because you thought ‘oh I’ll be able to soldier on or …’

F Well I wanted to soldier on because I am quite a strong character and I just didn’t want any sympathy

M Right

F And that’s what I would have got off a lot of people. And I just wanted to go on and enjoy my pregnancy as best I could. I mean I did have my moments where I just wanted to cry and probably did cry. But again no one to talk to. Yeah that’s what I’ve missed out really, quite an important point. We did have extra scans throughout the pregnancy and I’d said if there was anything there that was really serious, I might have to terminate the pregnancy. You know, say it was very serious, heart defect or… that’s my thoughts at the time. Anyway but then I started having nightmares thinking ‘blimey, after these scans we’re having, if summat shows up, and I’ve over 20 weeks pregnant, will I have to give birth?’ And it really did prey on my mind. So one day, Sam was asleep at home and I rang up the hospital, I said ‘I need someone to talk to, I’ve been told there’s a 1 in 20 chance, I’ve got no one to talk to and I’m worried sick that if one of these scans shows up something really serious and we decide to terminate, can you put me to sleep?’ Basically, can you give me, you know what I mean, an epidural and all, not epidural even, a Caesarean?

M Caesarean right

F And they said no they couldn’t do that because it’s more risk to you because it’s a serious operation, you’d have to give birth. So I was left to think ‘oh my God if any of these scans show up anything serious and that’s our decision, I have to give birth to a live baby?’ Anyhow the lady on the end of the phone at the hospital was lovely. She said ‘ah if you want to come down, come down’. I said ‘well it’s not as easy as that, I’ve got Sam here, he’s asleep in bed but I just need my questions answered basically’. So it just shows that people do need someone at the end of the phone or … But I’d lost trust in the midwife by that point ‘cos of the way she broke the news; the way she made it all so negative.

M You know the health visitor, the person who came to visit you, was she not able to sort of answer your questions about those concerns?

F Well she was only around for so long

M Right, I see

F She probably could have, but once we’d been admitted to hospital, and we came home I can’t remember that she was still on the scene. Because I think they’re only there for so long, a certain chunk of that time. But she would have been the ideal person, yeah, but again your thoughts aren’t clear at the time at all, so yes that was really hard that um, who could I talk to about my concerns, because there was nobody.

Anyway looking at Alfie, Alfie was born with Down’s Syndrome but it was also found that he had a hole in his heart which is quite common in children with Down’s Syndrome. So he had lots of tests and things to see whether they could do the surgery through his groin, you know it’s quite complicated but rather than doing the open heart surgery, they were hoping they could do it that way but after going up to Newcastle the hole was bigger than what they thought here.

So anyway to cut a long story short, we knew that Alfie had a hole in the heart and it would actually need open heart surgery and they would prefer to do it before he went to school. So it wasn’t urgent, the hole was there but all babies are born with a hole in their heart apparently, but it closes up itself. But Alfie’s didn’t, but I remember it was the 5th November which was bonfire night and we got a call from Newcastle, this was a Monday or a Tuesday, saying ‘we’ve got a place on Friday for Alfie to have his operation’. And I thought ‘can’t do it, can’t put him through major surgery because there’s nothing wrong with him, he’s a healthy boy, he’s fine’ because there was no obvious, there was no breathlessness, there was no, nothing, but it was something that had to be repaired. But what was great at Newcastle, they had sort of an in-between person, can’t remember what her role was, well what the name of the role was but basically she was a go-between to ask any questions. And she said it’s perfectly normal how you’re feeling, if Alfie was like, if you felt he was really ill you wouldn’t hesitate, ‘cos his appearance and his you know, basically healthy child, it’s much harder to make that decision to go for surgery and I said ‘well I’m worried about Helen and how do we involve Helen in all this?’ And she was so good, she was absolutely fantastic for advice and support and ‘oh the surgeon you know is one of the best that you could wish for’ and really made us feel at ease. So anyway we went off to Newcastle for surgery, had the surgery on the Friday. By the Sunday lunchtime he was up and running around as if nothing had happened. It was absolutely amazing. The only thing we had to be careful of is how we lifted him, because of the big scar on his chest. But it was amazing. ‘Cos when they are sore, they appear poorly because they’re all wired up and you know they’re asleep and you think ‘oh, is he ever going to be Alfie again?’ anyhow he soon was, probably sooner than what we’d have hoped, ‘cos he always has been quite a livewire. So that was quite traumatic to be fair. You know, any child going through surgery, but I think Sam had prepared us a little bit because he’d had a couple of minor operations so we’d got used to that sort of thing about going to the hospital, signing forms and having operations explained etc.

Other things that Alfie’s had to endure – an eye squint, he’s had surgery on an eye squint but again no problems, no qualms with any of the staff, all absolutely lovely. He’s had grommets fitted in his ears. At one point we did think he was deaf and that came from a professional, told me that it seems he’s profoundly deaf so that was another hurdle. I thought ‘oh, bloomin’ heck’

M So how old was Alfie when?

F Oh he was quite young, he was about three, BECAUSE that was the autism setting in. ‘Cos he’s so focused in his own little world, he would just ignore everything else no matter how loud or quiet, he would just focus on what he wanted to focus on and usually it would be something he wanted to twiddle or sort of a reflection in a mirror, or something quite, so yes so that’s. And even now if you met Alfie you would think he was deaf because he doesn’t reply to his name, doesn’t wave, doesn’t point. But he isn’t. He can hear a sweet packet open like the best of children out there! So there’s certainly no problem with his hearing.

He’s had no chest infections which children can be quite prone to with Down’s Syndrome because all the sort of airways and the make up of the face and ears, nose, everything is quite different to ours; but back end of last year bless him, he did develop pneumonia. And that’s the first serious illness we’ve had with him so I feel quite fortunate about that. Yeah but it wasn’t nice and I’d certainly know if he was going along that route to get pneumonia, what to look out for i.e the way he was breathing. Yeah, now that we’ve been through it I’d know what to look out for, the signs and get him to hospital sooner.

But … but yeah, he’s absolutely beautiful, all my kids are beautiful I have to say. Let’s have a look through my notes, that’s about his hearing.

Yeah with the autism, I’m going to blame the autism not the learning difficulty, he’s got no sense of danger, absolutely none. And a sort of kick up the backside for me and dad, basically, was the day that he jumped out of his bedroom window, and survived thankfully – it was a miracle. It really was. Alfie has an obsession with water, absolute obsession, it could be a puddle, it could be taps, it could be a pond, it could be his own wee, ANY sort of flow of water or even stagnant water, and we didn’t really realise how bad it was until this day. It was a day in June, 13th June and it was some famous footballer on the telly, can’t think who it was now. Anyway, I’d put Alfie to bed and it was a really, really hot day, we’d been to South Gare for the day so I was red raw from the sun. Anyway I put Alfie to bed, went up to check on him, opened his bedroom door and I must have just slightly, he was probably just almost asleep, as I’ve opened the door I’ve woke him up, but didn’t think I’d woke him up fully. Anyway I went downstairs, sat on the settee with my half a lager and bag of crisps, thinking ‘oh I’ll watch the second half of the football’. Mark was out because he was out every Sunday night (yeah football must have been a Sunday). Helen had left home at this point but she was there. All the windows were open because it was such a hot day. So I’d just sat down, the sprinkler was on outside, the garden sprinkler. Next thing I heard was an almighty thud. I jumped up, looked out the window and there was Alfie on the ground. So I just screamed to Helen ‘999’. I just screamed and I ran outside and I just scooped him up off the floor and he was limp, he was unconscious then basically. I started going absolutely berserk. My neighbour came running round ‘Linda, Linda what’s happened’ and I explained. She said ‘Oh Linda you shouldn’t have picked him up, with a fall or anything you have to leave them.’ I said ‘I can’t, I couldn’t have left him on the floor, he looked like he was dead’. So anyhow I picked him up ‘cos I was like really, I’d gone hysterical. He came round. Anyhow the ambulance came so quick, so we rushed off to hospital, stayed there till the early hours of the morning. Mark came along and like I say it was a miracle, all he had was a black eye. BUT he hadn’t fell out the window, he was on a mission, the water! And that’s what really made us realise then, bloody hell, do you know what I mean? He has got NO understanding of danger whatsoever. ‘Cos I didn’t really know a lot about autism at the time, you know I’ve had quite a learning curve, quite a steep one. Yeah so it was, it was a miracle the fact that Helen was there, the fact that I’d sat down, ‘cos normally kids are in bed you sort of potter round. I’d heard him fall. Where he fell was a miracle because it was wet with the sprinkler, he’d missed quite a wide part of the paving underneath the window, he’d missed the open window downstairs, which could have been fatal couldn’t it, landing on that? He’d landed in my border which had cobbles, not little pebbles but cobbles and then there was a gap of nothing, just like mud if you like and then more cobbles and his head landed in that soft gap. It was amazing, absolutely amazing

M It’s incredible that

F Yeah, so obviously since then we’ve had to put a lot of things in place at home and at school, respite, everywhere he goes to ensure his safety. Because he would run off and as he’s got older he’s got quicker, as he’s got older he’s got stronger. I mean he has got out of the window once since, and that’s with his dad, it could have been me. That’s why we hesitate who we leave him with. Because if things like that happen with us, it, you know it could happen even more so or maybe not, ‘cos I guess if you leave somebody who you trust, leave somebody with somebody that you trust, they’re probably, I’m not saying they’ll take more care, but they’ll probably shadow him more than a parent. I don’t know, but we have to be so careful really that people understand Alfie’s needs because even Helen, his big sister, ‘cos she’s left home she’s become more like an auntie and even if she holds his hands when we’re outside she doesn’t understand still, if she doesn’t hold his hand tight, he’ll let go and he’ll be on the road. So he’s, he is hard work and what makes things harder at home is the fact that him and his big brother are so different. We acknowledge that. You can’t force people to get on, you can’t force people to play and over the Christmas holidays, it’s been hard because one person said to me, ‘Linda, what went wrong?’ meaning ‘What went wrong in the family’, ‘why do your two boys not get one, why don’t they play?’ and that was a family member. And I went to bed with those three words …. ‘what went wrong?’; thinking ‘is it me? Am I a bad parent? What have I’ I don’t know but it’s not nice to hear. But again it’s just people don’t understand and it is hard. I mean they’re all fantastic kids, but so different. But me and Mark are getting on with what we’ve been dealt. It isn’t easy but we love the kids

M What are your hopes for the future?

F For the future, Helen is quite happy, she’s single, she’s working at the hospital, she enjoys that.

Sam has just started senior school. He’s coping very well. I think if he’s understood by everybody there’ll be no problems. Because he’s a little bit quirky. He is a little bit lacking common sense sometimes but very intelligent in other areas. So I don’t really worry too much about his future. I think he’ll end up with a fantastic career, as long as people understand him that he’s not sociable and just to be understood.

Alfie, to be at school till he’s 19 and he’s in an absolutely fantastic school at Redcar, a special school. Haven’t given a lot of thought as to what will happen after that, but he won’t be at home. You know I’m 50 this year, and it’s only natural that children grow up and they leave home. So we have to sort of find a sort of lifestyle for him and there is options out there. Admittedly a lot of them are out of area, which is a bit of a shame, but no, I just hope Alfie continues to be so happy. And he’s a pleasure. And I don’t regret a thing. And anybody who’s out there who’s going to have a baby with Down’s Syndrome, ‘cos I understand Down’s Syndrome, celebrate – go out and celebrate. Because I wish I had, I really do, because he’s brought so much … I’ve been to things like, for instance ice skating at Billingham with Alfie, except you can go on with him in his buggy or a wheelchair and I can go in with my flat shoes on and it’s inclusive. It’s something that you wouldn’t think a child in a wheelchair would be able to do, but they can. I’ve been cycling with adapted bikes with Alfie which is fantastic. I’ve been to the Calvert Trust and that’s an organisation that do sports and they challenge. They won’t say no to anything. So Alfie, despite his obsession with water, has been canoeing, he’s been sailing and I think he’s lucky because he’s got me now, I like to do all these things so .. he’s been on this fantastic zip wire – I’m at the bottom, he’s up there getting harnessed and ‘wheeee’. ‘Cos I know what he enjoys, do you know what I mean, and he is an active boy, but that’s when he’s at his best. Yeah, so we’ve and I’ve met some lovely people, I’ve helped a lot of people, so yeah, we’ll see what the future might bring.

M If you were to give birth to Alfie now, and knowing what you do know now, do you think things will have changed? People’s perceptions of children with Down’s Syndrome, how they treat you and

F Alfie little bit

M Yeah? Alfie little bit

F A little bit. Yeah I mean to be fair, I think because Alfie is so endearing, he’s so innocent and ‘cos he doesn’t talk and things, he seems younger than what he is. We’ve had very few adverse comments or tuts and things. You know, say ‘cos I’ll be like, see if he’s thirsty, he’ll just take a drink so it could be a family sat there you know having a few, you know Capri Suns or whatever and Alfie …. I’m thirsty, there’s a drink, I’ll have it. So there I am apologising profusely and most people when they see it’s Alfie, they’ll say ‘it’s fine, don’t worry’. A couple of times I’ve had like people, ‘cos he can be quite loud, vocally and so, and it’s understandable, if I had somebody suddenly screech or go ‘eeeeeee’ behind me I would look. And I accept now that in the early days you’d think people are staring – but a lot of the times they’re not, they’re curious for whatever reason. ‘Cos I will, if there was somebody over there with a child with Down’s Syndrome I would be DYING to go over and say ‘hello’ but I’d be looking, thinking ‘should I or shouldn’t I?’ and I’ll be seeing what their child. And it’s like with any child growing up you do, you don’t intend to compare but you do, you sort of look and see what’s similar or what is dissimilar. But I would hope things have changed. The main, I don’t know I think the autism is the hardest part for people because it’s a hidden disability. So I think that’s the hardest part for people to understand, you know a child who’s past that, SHOULD be past the age of tantrums, is still having them. And people think that’s bad parenting and it isn’t. It’s just that child has got a lot of complex issues going on in their brain, especially round sensory things. So I would hope for more awareness really about autism in the next ten years.

M Yeah. Do you feel that people THINK they’re aware of autism, ‘cos it does get quite a lot of publicity doesn’t it?

F No, people think they know because they’ve seen Rain Man or, and that’s … it’s a spectrum and they’re all so unique, so different. It’s fascinating, absolutely fascinating but complex, yeah you can’t just say, you can’t just think you’ve read a book or you’ve seen a film and understand it. You just can’t, no it’s quite, it’s amazing. So yeah life is difficult but challenging, rewarding, interesting, keeps me going.

So yeah, I’ll just check my notes so I haven’t missed anything.

Yeah, one thing I’d like to say is once Alfie was born and I’d got over all that grieving, accepted my child with Down’s Syndrome and looked forward to teaching him, I bought all these resources to help teach him, everything, colours to speak, matching pairs, everything like that. And then when he was diagnosed with autism, I had to go through all that grieving again, ‘cos I’d lost that child with Down’s Syndrome and a child with autism is a total different kettle of fish. So I did go through a little while of thinking ‘I want a baby with Down’s Syndrome only’. Because I’d really got my mind set on that, and I think my aspirations were a little bit high so I had a long way to fall. But yeah I did go through a period of grieving again once that diagnosis

M Did people understand that?

F Professionals did

M Yeah

F Some, like Alfie’s psychiatrist did. The community nurse understood, but no lots of other people don’t. And grief is a complex thing, you know ‘cos men and women sort of deal with it quite differently so, but no

M You said your husband didn’t quite understand …. at the time?

F Well, he did obviously he was there when we got the diagnosis of autism but I think to Mark, it was just Alfie, no matter what the label, which is a good way to look at it, where I was thinking more deep, thinking ‘oh I’ve learned all of that about Down’s Syndrome now I’ll need to go and learn more about autism’. Where Mark just, I think, lives more day to day, just gets on with it. Yeah. I think some men sort of might, ‘cos I know a lot of families, some men sort of put their head in the sand to ignore it, other families I’ve met, grandparents can be quite a challenge because they tend to ignore it, think it’s going to go away. They’ll say ‘oh one day it will, you know he’ll meet a lovely girl and get married.’ But some children it’s obvious, I mean Alfie probably won’t to be fair. But I think sometimes grandparents want to make it better, they want to fix it. And that’s quite hard for the mum or dad sometimes – ‘cos deep down you know it can’t be fixed

M Grandparents are sort of like trying to put on a very positive front

F Yeah some put on a positive front and some I’ve come across totally ignore it, ignore that child. And again it’s probably their grief and no one to share that with; that ‘hang on do you realise what you’re missing out on, it’s a child’. But sometimes whatever, it could be something that’s happened in the past or…. So relationships can be affected in lots of ways. I think, I mean we’ve only got Mark’s mum, grandma and she was quite tearful in the early days, sort of rushed us out ‘cos the Salvation Army were playing in the street, ‘come on, bring Alfie out’ as if you know, something was going to cure him. But she’s accepted him, yeah. So yeah, it’s quite a journey but could have been better IF there was more positiveness at the beginning. It’s too negative, this thing about disability just equals negative thoughts and actions.

M ‘Cos you obviously recognise potential, you know in obviously all your children but because there are very special circumstances as well, there’s got to be special considerations but you can still have that sort of vision of what these children can be like in the future as well, yeah?

F Yeah, yeah honestly children with Down’s Syndrome are beautiful. And they are all so individual. I mean I’ve seen little girls of about say 11, and they’re proper flirts. And they like to wear all the clothes like Girls Aloud, just like any other 11 year old. But they might not talk very clearly, might be a little bit slower, some on the what I would call Down’s Syndrome spectrum, some of them are more, probably more able than some people without that label. Because you know some have gone to university, not many, some drive, some do get married. So you never know, you never know with that child that might be born with Down’s Syndrome, what’s ahead. Nobody does do they?

M No

F With any child? Nobody knows what’s ahead. I’m at a funeral tomorrow, of a young lady who’s just died, 16 and I’m, when people sort of complain about the children, not in a negative way but in whatever way, I think ‘well, they’re still here. The main thing is that they’re here’. So make the most of every day. Yeah.

M Well I think that’s a good positive message to end on because I know you’ve got to go, somewhere else you’ve got to be. So, thanks very much for sharing that experience with us

F You’re welcome

M We really appreciate it.

F You’re welcome

Heather’s Story

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Transcript

I lived in Rugeley in Staffordshire, I retired early from the civil service job centre network but returned for temporary and short term contracts. Heather actually worked for the same organisation and we were working in the same office at one stage. I’d been to college to learn bookkeeping and accountancy with a view to going self-employed. I already had two clients with a number of other promises. Heather enjoyed gardening and socialising and we owned a mobile home in Somerset that we visited for holidays and weekends. We also holidayed regularly with our cousins in France, all over the place. Running was a big feature in our lives. For many years as competitors, coaches and race organisers. I competed in races up to marathon distance and also took on triathlon events involving swimming, cycling and running where I won a number of age group prizes. I even ran 101.5 miles in 24 hours to raise money for equipment for the local hospital. Heather and I started a senior women’s section at our local athletic club as they only had one senior lady member when we began and we built up a quality team which went on to win a national cross country title at Sunderland. We also fostered a second group for beginners and social runners and we averaged about 45 or 50 members in total. Annually we also organised a running event for the British Lung Foundation, attracting several thousand runners and raised thousands of pounds for that charity.In June 2001 Heather and I were on holiday with friends in Spain. When we got back, early one morning about two days after we returned, Heather complained of a pain in her left hamstring and I thought that might be a muscle pull because she’d been to aerobics the night before, a very get fit lady! The pain got worse so I had a look at it and I noticed immediately that the left leg was cold and discoloured so, after giving Heather an aspirin, I telephoned NHS Direct and following consultation with a doctor they arranged for immediate transfer to hospital. Following tests the doctor confirmed that there was a significant clot in the leg and she would have to be admitted. I remember the doctor describing this as ‘fairly extensive’. I didn’t realise, it certainly didn’t register at the time that this was potentially a very, very serious situation. Two days after she was admitted, a catheter or filter was inserted in the main artery in the neck which would stop any pieces of the thrombosis breaking off and entering the heart or lungs or brain and potentially killing her. The filter would normally be inserted in the groin but this wasn’t possible due to the position of the thrombosis because it extended from the upper thigh right into the lower stomach area. The surgeon had three attempts to insert the filter and a haematoma subsequently formed as blood leaked into the neck. Heather’s neck became badly swollen and subsequently she found difficulty swallowing. She couldn’t eat and held ice cubes in her mouth to let them melt and the water trickle down her throat and they put her on a drip to compensate for that and put her in a high dependency area. Mind you, she was still the life and soul of the ward and was trying to cheer other people up.At seven o’clock the next morning, I had a phone call from the hospital saying Heather had taken a turn for the worse. When I arrived, I was told that she had suffered a respiratory and cardiac arrest after the haematoma had cut off her airway. Her heart took 20 minutes to restart and a tracheotomy was inserted to aid breathing and, following that, she was transferred to the critical care unit. For the next five days Heather remained very poorly and I stayed at her bedside 24/7 holding her hand; brain scans were taken which showed massive brain damage with very little brain activity and she was in a state of constant epileptic seizure. It was indicated by her consultant that she was unlikely to recover fromthat position. Heather’s elderly parents came to see her during this time and decided that they wouldn’t visit again as it was too painful to see her as death was now inevitable. On the 6th July she was moved from the critical care unit to a side room on a ward, set aside for terminally ill patients. It was confirmed by the consultant that Heather had no hope of recovery and the best action would be to let her pass away in a dignified manner.She was still fitting severely and the fits showed no sign of abating although controlled by drugs. It also seemed unlikely that there was any higher brain function. Following a meeting with the family, the decision was made to withdraw support and to allow her to pass away quietly. So antibiotic treatment and feeding by nasal gastric tube would be withdrawn and her file marked ‘not for reventilation or resuscitation’. The following day Heather was anointed by the minister from the hospital chapel and this is a sort of ‘saying goodbye’ ceremony. For the next week, myself and the family sat vigil at the bedside holding her hand and talking to her and during this time we were asked if we wanted to take her home as she could be in this state for days or even weeks before she eventually got a lung infection and died. Also during this time Heather developed lots of eye flickering which was disconcerting. The doctor reviewed Heather and said there was nothing in it, but I was not convinced or didn’t want to be convinced.On the 13th July, I was sure that she squeezed my fingers. It happened again the day after and then she seemed to squeeze my fingers on demand and so we were quite pleased about that although obviously we didn’t know what was causing it. But then she got her smile back, despite the fact that she was unconscious, she was smiling. We called the doctor and on request she gripped his hand and he immediately called for reintroduction of feed and antibiotics and agreed to review the situation after the weekend. After the weekend, we had two visitors. The doctor came and, seeing the improvement was still evident, ordered the introduction of an aggressive rehabilitation policy. The minister also dropped in and said it was the nearest thing to a miracle that she had ever experienced.Only recently in a conversation with Alison, her senior carer, she said ‘I died didn’t I?’ and after a pause and a thought she said ‘I died, but I didn’t like, it so I came back’.From July 16th until September 3rd, Heather remained at the hospital where she continued to make progress and she was then transferred to a nearby rehabilitation unit where she remained until her final discharge on March 4th, 2002.The experience had an adverse impact on my health. During the initial two months in hospital, I had lost two stone in weight and clearly not at my best. When Heather was moved from the critical care unit to the main ward, I would go home late in the evening after ensuring she’d received her last medication and return again the following morning. Because of staff problems, it was often well after midnight before she had the medication and I left for home. It was on this trip home in the evening that I planned my suicide when Heather eventually died. The road home took me through Forestry Commission land and this had many twists and turns and at one of these turns I would close my eyes, press hard on the accelerator and I couldn’t fail to hit at least one of the trees. When I got home, I couldn’t sleep, worrying about Heather. I felt so depressed that I took to alcohol in a heavy way which gave me a couple of hours’ oblivion before I showered and dressed and returned to the hospital early the next morning.One day while showering, I found a painful lump in the chest area and arranged to see my GP. He was sufficiently concerned about the lump to refer me to a breast cancer specialist. Unfortunately the specialist turned out to be the consultant in charge of Heather’s care which left me with less than 100% confidence in his ability and, that apart, I think it was a very poor decision in itself. Eventually however, after mammograms and biopsies I was declared clear.The news eventually that Heather could go home was great and to begin with we were offered daily home support and visits to hospital rehabilitation day units three times a week. However, when we got home, the hospital said that it could only provide two half days a week because Heather was no longer an in-patient and as a consequence many other facilities were no longer available to her, one of which was the therapy pool which was an experience that Heather really enjoyed. She would go to the rehab unit by ambulance bus along with other clients and, because she was one of the first on, it would take about 60 to 90 minutes to get to the hospital. The return trip was similar. So this became a very tiring and often traumatic experience and as a result she would invariably have epileptic seizures on her return. To make matters worse, she did very little while she was at the unit apart from occasional physiotherapy. I went in several times to find her sitting alone at a table with a magazine open in front of her and no ability to turn the pages. No home assistance could be provided at the weekends and only 45 minutes in the morning and 30 minutes in the evening during the week. So apart from washing and getting her up in the morning and putting her to bed at night, I had to look after her 24/7 myself. After a while, I even cancelled the evening input because Heather was invariably tired well before that and needed to go to bed. So I would do that myself and even when weekend support was added in, it was often late not by minutes but by hours or didn’t turn up at all. A few days after discharge, we received a letter from Heather’s social worker; it was actually her third social worker in the nine months she’d been in hospital saying that she had relinquished responsibility for Heather and that the local authority would take up the role. It never did. Nor was there any planned follow-up review with her consultant.Home life as you can imagine, was very difficult. I had to convert our ground floor dining room into a bedroom; unfortunately this room was long and narrow and could only just house two single beds side by side. At night, I would have to bring this second bed down from upstairs for myself and put it next to Heather’s. Heather was severely and doubly incontinent, a fact that the hospital had failed to inform myself and required hoisting on to a commode several times during the night. To do this, I needed to strip my bed off and remove it in to the next room, using the hoist, transfer her from bed to commode and complete the toileting (which was usually too late) and I had to do washing and cleaning before getting her back to bed again and then reinstating my bed. During this procedure she would often have epileptic seizures because the hoist was not her favourite mode of transport. Heather had virtually no use of her limbs; she couldn’t bear weight and couldn’t grasp anything. Her left arm was almost totally useless so everything had to be done for her including feeding and drink and all the usual domestic services. Obviously a stair lift would have been a tremendous help because we could have then got her into a proper bedroom with a bathroom and access to a double bed and showering etc. but no real home assessment was made and, in discussions with the occupational therapist, we were told that Heather would have to go on a waiting list if we needed a stair lift and it would be about six months before she could get on to the waiting list and from that point 12 months plus before they could provide a stair lift for her. Unfortunately we received no support during
this time from being assessed as needing 24/7 care, brief daily input provided little respite for us. Simple operations like washing her hair I would have to carry out myself using the hoist. We would hoist her on to the edge of the bed, supported in the sling and put with her head just hanging over the edge of the bed, supported, put a bowl underneath and then wash her hair like that, you know. Obviously that was a traumatic experience in itself.It all proved to be a horrendous experience, capped on March 14th when I went to our GP’s surgery to get a repeat prescription for Heather’s medications. In front of a busy surgery reception, I was told that they couldn’t comply as the hospital had informed them on the 10th August in the previous year that Heather had died! As you can imagine, I almost collapsed on the spot.We were getting desperate, as you can imagine, until one day we had an offer that we couldn’t refuse. Heather’s sister lived in Northumberland and she talked to the Northumberland Head Injury Service who said that they could provide a full rehabilitation package if we lived in their catchment area. So, with little thought, I took the immediate decision to move, even if we had to rent property. By August we’d moved to Northumberland having sold our previous home and bought a replacement albeit, unsuitable property in Bellingham, but it got us into the catchment area. The Northumberland Head Injury Service set up an extensive care regime for Heather and myself that included complete care package seven days a week as defined by Heather and myself; occupational therapy including access to necessary equipment for home and in fact we had two occupational therapists at that stage, one from the service and one from the local authority. She was provided with physiotherapy; she was provided with speech therapy, psychological therapy and rehabilitation group sessions where they actually got down to doing things. And obviously access to a consultant on a regular and on-demand basis. For someone who wouldn’t survive, she now looks remarkably well. The effects of the brain injury are still evident: in the main, cognitive problems, difficulty with attention or concentration, memory problems, difficulties with problem solving – we don’t give her a range of choices – it’s often, at the most two or perhaps even one where she can say yes or no. Difficulties with problem solving and obviously taking longer to think about things, so you know, you don’t rush her, just let the process work. Loud noises also upset her tremendously such as low flying jet fighters that we do have over this property from time to time and she gets easily fatigued. All symptoms of brain injury. She still suffers significantly with epilepsy but in the main that’s controlled by drugs. However, now she can feed herself and particularly on the good days, she helps the carers to dress her and she can also put on a bit of makeup. She goes to the local gym twice a week and for someone who would never walk again, she does exceptionally well. She can now get about obviously with assistance, myself or a carer and she can even manage a few steps. Heather continues to improve and astound us all.And how are things now? With Heather’s improvement you would think we were absolutely delighted. However, since Heather left hospital friends and family assume that all is well and we no longer need their support. Nothing is further from the truth. We know lots of people in the area but we have no real friends apart from the carers and I must say that our team of carers are the most important people in our lives and we couldn’t survive without them. All this has had a major impact on our lives. We have lost all the intimacy of marriage – I’m no longer a husband but a carer. Heather has lost all dignity with having people looking after her all the while and the presence of carers means that we have no privacy, although we wouldn’t do without them. I take medication for depression, angina, high blood pressure, hiatus hernia, gout, high blood cholesterol and low bone density. I’ve had two minor strokes and recently had a replacement hip operation. I’m an alcoholic and have suffered a general loss of fitness and increase in weight. Oh yes, our problems are all over.