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Fiona and John - Interview 09

Age at interview: 46
Brief Outline: Fiona's husband was diagnosed in 2003 at the age of 42 with early onset Parkinson's Disease. He has continued to work full time.
Background: Married, 2 children aged 14 and 18. Husband is still working. She is an NHS Manager.

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Fiona’s husband was diagnosed in 2003 when he was 42. He first noticed that he couldn’t reach up properly in the shower and he felt disconnected with his left side. Fiona had noticed that John’s left arm didn’t swing when he was walking. His GP referred him to a neurologist and they used their private health insurance to see the neurologist at a private clinic. John was quickly diagnosed with early onset Parkinson’s Disease. They were both very shocked because they didn’t realize Parkinson’s Disease affected younger people. They decided not to tell anyone for a while, which helped them to get used to the diagnosis and become confident that his symptoms weren’t progressing fast and he was managing okay. When they did tell people, they were able to reassure others with this knowledge.

 

At first John was not prescribed any medication. He was referred to a physiotherapist who specialized in helping people with Parkinson’s Disease, after Fiona showed her GP an article on the benefits of physiotherapy for people with Parkinson’s Disease. The exercises have helped with the backache he gets from being slightly off balance.

 

They both continued to work full time. Although John worried about how things might change at work, his company has been very supportive and his colleagues treat him as one of the team. Fiona worried at first that everything would change overnight but it has not been the case and their life continued as normal for many years, with little adjustments needed. 

 

During the last year, John’s symptoms have changed and have become more noticeable. John recently started taking Ropinirole but it gave him extreme nausea and he is waiting to be put on a new medication regime. John has started to experience quite a bit of stiffness and difficulty with balance. Getting dressed takes a long time and he has bought some slip on shoes so that he doesn’t have to manage with laces. Most of the time John likes to try to do things himself.  Fiona tries to find a balance between helping him to do things, and letting him do things for himself, but it can be hard sometimes. It helps to have a joke together to ease any tension. Their children help out as much as they can to lighten the load.

 

John gets very tired and turning over in bed at night is an effort. They still do many activities as a family, but now they do things slightly different than they did before. They go on less strenuous walks and had a holiday on a cruise liner.

 

Although they didn’t feel they needed to use a support group when John was first diagnosed, they recently went to a local support group and found it very helpful to hear the experiences of others. Fiona found the Parkinson’s Disease Society helpline very useful to offload her worries and concerns and to speak to someone impartial.  She recommends the helpline to others.

 

Fiona feels guilty about feeling angry about her husband’s PD but admits this helps her to cope...

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Yeah in terms of emotions I say, I do feel angry about it and I feel guilty even admitting that, but I feel I can look at that and I, it doesn’t, I don’t feel like it’s making me bitter about it because I feel, that it’s something I can look at and think ‘right, we can cope with this. There’s a lot of help and support out there’, and my husband’s you know, determined to, to get through this. We’ve got a very good family and friends. 

 

I do feel guilty sometimes that, if I don’t have the patience, sometimes if, if, you know, with he, my husband’s struggling with something, I’d say nine times out of ten that I have got the patience there but sometimes I’m working full time I get tired. But, you know, if ever that happens and it’s not very often we always, you know, it, it’s not a problem, it’s something that we, we get through together and I think he, he understands it’s, it’s not easy for me sometimes. 

 

And I suppose sometimes as well, with the children I think, you know, I, try not to sort of put any burden onto them but sometimes I want to say, “Come on, you know, we need to pull together and do this, you know, get through this for Dad as a, as a family.” But then by the same token they’re still children, and they, they’ve got, you know, demands from school and, you know, they, they’ve got, they’re going through difficult things as well themselves. So it’s, sometimes it’s, it’s hard, you know, as a family to, to get through sometimes.
 
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Fiona found the helpline discretely sensitive to her needs and its trained nurses helpful and...

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There is a helpline with the Parkinson’s Disease Society and that I’ve rung a few times and my husband’s rung a few times and although sometimes you have to leave a message and they will ring you back, someone always does ring you back. And, and I’ve, particularly sort of in, in the first few years I found that really helpful, just to be able to talk to somebody impartial and I’ve spoken to the same lady a couple of times and it’s been really good just to be able to, you know, offload some of my worries and my concerns. I’ve got very good friends but I don’t feel like I want to burden them all the time and I know they’d say, “Oh you could talk to us any time.” But, you know, there are things that you, that do build up and you do worry about and someone familiar with the subject to be able to talk to I found that really helpful. 

 
That was a little bit tricky in the early days because it was before I’d told my children so, but they would never say who it was calling they’d just say, “Is your mum in?” And so that was never a problem anyway. And I did suggest to my husband when he was struggling, when he first, was on the medication and it wasn’t suiting him, I got him the number and he rang and he said that was really helpful again. Because the thing is when you go and see the consultant it’s sort of, perhaps initially it was once every six months and now it’s once every three months and we try and make a note of things to ask about when we go but it’s, it’s in-between time really, just having that, having somebody you can talk to, and although our GP’s very good, he, he says himself he’s, you know, he’s not the specialist in that, that condition. So just having that helpline is, is, is really good.

 

Fiona’s husband had to have a second MRI scan because the first had been inconclusive.

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John went for his MRI Scan and I can remember [waiting for the results] it was a Friday afternoon and we came back in from work probably and there was a message on the answering machine, and it said, “This is the clinic we need you to contact us because we need to repeat the MRI Scan.” So I got that in my head that, ‘for some reason, oh it isn’t Parkinson’s they’ve found it was something else.’ On the other hand my husband because he felt it was very difficult lying still, having that whole procedure done, for him it was like, oh my goodness I’ve got to go through all that again so it, and all it was, they did need to repeat it but it, I thought, in hindsight that just to be left that message on answering machine on a Friday night and for us to worry all over the, the weekend. I felt, they may as well have just left it and, you know, contacted us on the Monday really.

 

So he went along, had the other scan and we went back to see the consultant and he said as far as he could tell, and I can’t remember the exact term he, he used but he said it was his clinical diagnosis that it was the early onset. And really he would be guided by my husband as to how he felt as to, he didn’t feel at that point the consultant that my husband needed to start any medication.
 

Fiona and her husband are glad that they waited a while before telling their family because it...

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My husband decided he felt it wasn’t fair to tell our children because they were only, sort of early teens. And we weren’t going to tell our parents because again we didn’t want to worry them. We felt that we were worried about it and for the time being we just decided that was it, we wouldn’t say anything to anybody. I found that quite difficult because, that’s [not] my nature that I, I find it easy to talk about a things but I respected [my husband’s] wishes.

 

I think really one of the things I know that I had in my head [was] that everything would change overnight that, the symptoms I was reading about would all start to happen straightaway. And I think because, although I said that we didn’t tell people at first, and I know it sounds a bit bizarre but it felt like, sort of almost like our little secret, in a way that, that time just gave us, a bit of confidence to know that things were stable and, you know, things were carrying on as normal and that gave us a little bit of confidence that when we did share the news with my parents and the children we were able to say, you know, look, you know he is okay, he’s coping alright and it affects everybody differently. And it did give us confidence to think well, you know, perhaps things weren’t going to change overnight and everything.
 

Fiona’s husband could not tolerate the nausea when he was on ropinirole.

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The consultant did prescribe Ropinirole and, it hasn’t suited my husband, as he started taking it he got extreme nausea with it and our GP’s been fantastic very good he did prescribe something to combat that, but it still didn’t help and unfortunately, after some time it, he wasn’t feeling any benefit our GP said to reduce the dose and come off that and they would try something else. But, but unfortunately as my husband’s done that his symptoms have got worse, his co-ordination, his balance, he’s very stiff, and he just, so we’re just waiting at the moment to go back to the consultant to look at his medication and start trying something else.
 

Fiona realised that it might not have been easy for the consultant having to tell them the...

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I think probably when my husband was referred by his GP to the consultant I think, although we didn’t realise it at the time, I think then he had an idea of what it was going to be. And that was fine I think that he didn’t say because at that point he wasn’t sure. And then when we went to see the consultant, perhaps in hindsight it might have been better to wait until after he’d had the MRI Scan. I don’t know whether we could’ve prepared ourselves any better because, probably at that moment of being told will always stay with us. I thought when the consultant went out of the room and then came back in again, I almost felt afterwards that it was hard for him to say to us, and he, he was almost sort of, you know, preparing himself because, although he’s probably done that lots of times it was difficult for him too, because he was giving us bad news and it was a shock. And I think probably he did it the best way that he could and that, that was fine for us. So it would’ve been there, sooner or later. So probably, that was the best way that we were, we were told really.
 

Fiona’s husband had already mentioned having difficulty controlling his arm when washing his hair...

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Well thinking back the first time [my husband] mentioned that he’d noticed something was wrong he said when he was in the shower he felt, it was different the way he was washing his hair. He couldn’t reach up properly and, but he didn’t know what was the problem he said he felt it was, he was disconnected somehow he said it was almost as if he couldn’t do what, what he wanted to do. Couldn’t really explain any reason for it, didn’t, mention it again for a little while, and then he mentioned it again, this feeling of being disconnected with his left side. He’s the sort of person that never goes to the doctors, but he said, “Well, you know, perhaps I should go and see what, what the problem is.” So again not really too concerned so he made an appointment and then, I can remember just before he went for the appointment we went to the seaside for the day with the family, and I was sitting on the beach and he walked back to the car to get something and it, as he walked back to the car it struck me how when he was walking along his left arm didn’t swing. He wasn’t walking as naturally perhaps, you know, as other people. So anyway I didn’t say anything to him and we went along to his GP, had a chat with him  and his GP said, “I’m going to refer you to a neurologist.”
 

They were initially careful to avoid upsetting information – Fiona would read things before her...

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But I know my husband felt the same it was almost, you felt you read so much and you got to the point where that,  that was enough. You sort of, it’s been a bit like a drip feeder almost, it’s almost, protecting yourself really. I know everybody treats it differently but it, but because it’s such a lot to take in we’ve just sort of done it in chunks really.  

I mean it probably was all there it, it’s just finding out about it really I mean like you say because he is younger. I think in the early days we didn’t want to find out too much, which sounds a bit sort of, don’t know, it’s almost as if you’re protecting yourself and sometimes when we first subscribed to a magazine that we got I, I would have a look through it first and then, I would sort of  field some of the information and sort of share it with him. Because I was trying to protect him in a way really because I felt, some of the things I was reading about it was scaring me and I thought ‘well if it, if I feel like that, how’s it going to make him feel?’ I know there is a, there is a YAP magazine that we get now which is for younger people and that’s quite helpful. And I, I’ve started to, I’ve, I had an idea for doing a fundraiser so I’ve contacted a few other support group branches and I’ve had some emails from people, just with a few words of support or comfort saying, “You know, we know what you’re going through and if ever you want to give us a ring.” So that, been quite good, being able to do that really.
 

Although the consultant advised them against looking at the internet, there was so much they...

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… then came back and sat down and looked at us both and he said, “I’m sorry to tell you.” He said, “But I, I think you have the early onset of Parkinson’s Disease.” And, you know, [my husband] looked very shocked and I’d got all sorts of things going on in my head and he said to us, “I don’t want you to go away and start looking at things on the internet.” He said, “I’m going to ask you to come back and have an MRI Scan.” And he said, “And then we’ll take it from there.” But of course the one thing you do is you go back home and you look on the internet and you do start, you know, thinking ‘well what does this mean? What’s going to happen?’ and it, it was a real shock because it was something, I thought it happens to older people. Very naively I didn’t realise it affected younger people.
 

Fiona found it difficult to know at first just how much to help her husband.

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I try to always say to my husband if he would like me to help him with certain things. I try not to jump in when he’s struggling to do something and do it for him and my daughter’s very good at that because, I realised I was doing that initially and, and she just said to me one day, you know, she said, “Mum you should really let Dad have a try.” She said, “I think he’d like to have a go at doing something.” 

 

So it’s achieving a balance really but at the moment when he gets up in the morning he would, he would struggle to fasten the buttons on his shirts, so I would help, I’ve had to help him with that so I would just, you know, so, “Would you like me to do that?” So I’d do the buttons and similarly with his tie. He can’t put his tie on so he tends to take it off, part done and then puts it on and I help him with his collar. Most things he can manage fine himself. Funny this morning I asked him if he would carry two cups and he said, “I can only manage one.” He’s finding it more difficult to do things and he’s always been a very practical person, he’s always done lots of jobs round the house.  But in a way my son’s starting to sort of say, “Well I can do that with you Dad.”  And, so we’ll all work together really.  But, probably fastening his shirt, sometimes helping him brush his hair sometimes or, occasionally I’ll do his hair for him just to make sure you, because he feels he’s not able to do it properly things like that. 

 

At night when he’s getting undressed, sometimes I’ll say, “Would you like me to help?” But it just takes him a long time at the moment because he does feel so stiff. Things like, sometimes I’ll put his socks on for him because it’s  difficult for him to do things like that and he’s bought some slip-on shoes so he doesn’t have to worry about doing laces.
 
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Balancing helping her husband with looking after their children and working full time was hard at...

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There’s a lot of help and support out there and [my husband’s] you know, determined to, to get through this. We’ve got a very good family and friends. I do feel guilty sometimes that if I don’t have the patience, sometimes if, you know, with, my husband’s struggling with something, I’d say nine times out of ten that I have got the patience there but sometimes, I’m working full time I get tired. But, you know, if ever that happens and it’s not very often we always, you know, it’s not a problem, it’s something that we get through together and I think he understands it’s not easy for me sometimes.

 

And I suppose sometimes as well with the children I think, you know, I try not to put any burden onto them but sometimes I want to say, “Come on, you know, we need to pull together and do this, you know, get through this for Dad as a family.” But then by the same token they’re still children, and they’ve got, you know, demands from school and they’ve got, they’re going through difficult things as well themselves. So sometimes it’s hard, you know, as a family to get through sometimes.

 
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Fiona and her husband had not wanted to join a group but he met someone on a charity stall and...

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We knew there was a support group locally. But at the time my husband didn’t really feel, and I was the same really we sort of didn’t really feel we needed that at that time. And but having said that recently we went to a town recently where they’d got a Rotary Club event and there were lots of stalls and one of the stalls was the local Parkinson’s Disease, it was like a support group and they were doing a fundraiser. And I’d spoken to the, I think she’s the secretary for the area on the phone and she said, “Oh, you know, come along and say hello to us.” 

 

And I mentioned it to my husband, so we went along. And my husband was introduced to this gentleman who’s in the group and he’s had Parkinson’s for quite some time, and he said over the last few years, he said he had to give up work because of his symptoms but he was referred to a consultant who worked with him, sorted out some medication and he’s doing so well and just that half an hour’s conversation that my husband had with that chap did more than anything that he’s had probably in the last four years because he was just able to talk on a one-to-one basis with this chap. I sort of was looking round the stall and chatting to the ladies on the stall and he said afterwards how helpful that had been just to be able to talk to somebody, and he said sometimes it does take time to sort out the medication. That was really, really helpful, and it gave my husband encouragement to know there is help.

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