Sharon - Interview 31

Age at interview: 57

Age at diagnosis: 49

Brief Outline: Forced by her Parkinsons symptoms to retire from a career she loved as a teacher Sharon turned things round by becoming a business woman creating the very successful Cake Bake Company.

Background: Divorced, cohabiting, Working- runs cake factory.

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Sharon was 49 when her Parkinson’s disease was diagnosed. She had been a deputy head teacher and was increasingly finding that the weakness in her voice was making teaching very difficult. When she developed weakness on one side and difficulty walking she realized she would have to change her job. She took a year off and during it got another job in education but after a few years this became too difficult for her. She started a cake making business with her partner on a very small scale but the venture rapidly took off and is now at 57 she i running a thriving concern, the Cake Bake Company. Her symptoms respond to medication but return rapidly if she forgets to take her pills. Incidentally she is not eligible for free prescriptions. She is not really able to take part in any of the physical pursuits she used to enjoy but finds a sense of liberation in being able to drive a flashy fast car.

Sharon distinguishes between what is best talked about to the neurologist and what the nurse is better for.

There is a Parkinson’s nurse at the hospital I go to and I’ve rung her two or three times. She is lovely. She is, it’s not that the consultant isn’t approachable, he is, he’s a lovely man, but there’s something in-built isn’t there about wasting consultants’ and doctors’ time. Your nurses are so much easier to chat to. And the consultant has authority. He can talk to DVLA about my driving and things like that whereas a nurse can’t. She’s, you can, I find I can be more honest and she’s much more about lifestyle rather than symptoms. And she’s a jolly lady anyway, so that’s nice. Yes, I did, I forget, I did talk to her about getting in and out of the bath and things like that. But I was horrified at the suggestions she made. She was, she was being very practical and I wasn’t really.   

Sharon can eat OK if she times her medication to fit in with mealtimes. If she doesn't she has difficulty swallowing and may bring the food back up.

Eating’s a nightmare. Simply because it’s so variable. Sometimes I can sit down and eat a meal perfectly normally I try and make sure that I’m not eating a meal at the end of the tablets that, so I have one set of tablets before breakfast and one before lunch and one before dinner. Well, I try and eat my dinner early so it is before dinner. Or make the afternoon one stretch out. Because it’s nice to sit down and enjoy a meal and if you’re all tensed up you can’t. The problem, the food goes down but it doesn’t stay down sometimes. It just is a nuisance I have to be careful that I drink as well as I eat. It is all mixed up the eating bit. Physically sometimes it’s difficult to actually make my tongue and my mouth and my swallowing work.

Sharon has leant that she can speak better 'on a laugh or a sing'. She sometimes worries that her voice problem is not caused by PD.

I’ve never been able to sing. But you’re quite right, I can talk better if I talk on a laugh, or I talk on a sing. But again people would think you were weird. You know, I can’t sing in tune but if I want to talk normally I try and talk on a laugh because it seems to relax it a bit.

 

But most of the time I just think, “Oh sod it, you lot are just going to have to put up with this.” And I just carry on. It doesn’t hurt. It sounds like it hurts and it doesn’t. And you have to be careful to keep your imagination in order. My grandmother and my mother both died of throat cancer, so you like the Pope my voice doesn’t work properly. So you can, you, I think you bring the melodrama out of it all and sometimes your imagination just gets melodramatic without you even giving it permission to. Just looking at what it is really like and dealing with little bits at a time, and actually nobody else wants to know about it. They get, it’s terribly, terribly boring.

Sharon has successfully mourned the many things she has lost.

Parkinson’s feels like the most enormous loss. And I think you mourn it. I think that’s what a lot of the shock and the, well it’s awful at the beginning is about, you’ve got to mourn that, that part in life that you’d a got a picture in you mind’s eye you were following, those places in life you were going to be and go and what sort of granny you were going to be. And what sort of a career person you were going to be. But once you’ve mourned that loss and changed your picture in your mind’s eye, then, no you would, I wouldn’t get depressed now.

Sharon described the symptoms which gradually added up till she knew she had to look for a diagnosis.

Oh I think all my life I’ve always found it a little bit more difficult to be coordinated. I’ve always felt I’ve had to push myself just a little bit harder. Things didn’t, weren’t. I could run but I ran awkwardly. I never felt, I never felt my body was put together properly. 

 

And then I was walking one day and a girlfriend said, “What’s with you, you’re walking peculiarly?” And I thought I’d had a minor stroke down one side of my body, one leg, just felt longer or shorter than the other. I couldn’t even decide which. So she said, “Well pull yourself together, walk properly. It’s only because you’re walking peculiarly that it feels like that” So I pulled myself together and walked properly.

 

But gradually bits of me started to shake, of, my left arm started to shake and I, when I went to bed at night I lay on top of it, to stop it shaking. And nobody had noticed much. And then in February 2000 I woke up one morning, I didn’t have a voice at all. It had just completely vanished, which is a tiny bit unfortunate when you’re a deputy head teacher. And gradually things, well in the end my girlfriend says, packed me off to the doctor. So the doctor says, “It’s your nerves,” and gave me valium, which is lovely because I shared it round the girlfriend. Everybody likes a bit of valium. But it didn’t do me any good at all. The shakes didn’t work at all, didn’t, stop, stop them. And things just got worse and worse. And it, it got so, it became obvious, I started to drop things, I started to drop cups of coffee. I’d go to pick something up, I’d pick it up and next thing I knew it was on the floor. And I didn’t know how it had got there. It was, and it begun to interfere with my life.

 

And things like if I was on, I did a bit of orienteering and climbing and things, and I fell and broke my knee. And, I suddenly knew why I’d fallen, it was my grip had suddenly gone and I wouldn’t normally fall. And I’m storing up a whole catalogue of, of things that I knew weren’t working properly and so I was able to cover up and hide from other people, because I was a single mum living with two kids who were much too busy leading their own lives to notice old mum. And it worked, I just managed to cover it up.

 

But in the end I made an appointment with the doctor and just, “Listen I think there’s something much more serious wrong than, than, I know you’re a good listener and you’ve listened to everything, but I haven’t told you everything. I mean, if I I’m absolutely honest.” And so we came to an agreement that I would go and see a neurologist.

Sharon had suspected for some time that she might have a serious neurological disorder and was determined to keep the diagnosis to herself.

I knew what he was going to say. I knew what I’d got. I think you do. What he actually said is, “You’ve got symptoms that lead me to believe you might have ..” And I could have finished that sentence. But the very biggest one, the diagnosis was just an enormous shock. However much you know what you’ve got, to actually be told you’ve got it, I knew I’d got it, I didn’t want anybody else to know I’d got it. It was the bringing it out into the open that was so difficult because if you can keep it private you’re in control. Whereas as soon as it came out into the open my life was simply taken over. 

Sharon realised that once people knew they would see her in a different light and she wanted to avoid this.

I didn’t tell any of my family. I didn’t tell any of my colleagues at work. The only people I told was three or four close girlfriends who I swore to secrecy. I wanted, I wanted to see what happened when you told people. It almost felt that that was more difficult to manage than what I’d got. I mean, for me it’s about the way the world reacts to it that so defines it for me and I had to, had to be very careful that I didn’t, again it was about control of your own life. If you tell someone you’ve got an illness they go, “Oh my God, that’s ..” And you think, “Is it? I don’t’ think so. I think you know, I’m still here. I’m still doing it, I’m still getting on, I’m still achieving.”  

 

It’s difficult to pin it down. It’s, it’s something about my desire to just be normal and to vanish and just get on, but it’s also something in their eyes. It’s as a sort of turning off in their eyes, where they expect less of me than anybody else. ...And that, kills a bit of me.

Sharon has created a 'tape recorder in her head' which reminds her to keep moving.

There is a bit where you have to be quite tough and quite disciplined because your body forgets how it’s supposed to work. And I keep retraining it. When I’m walking I often have to resort to heel-toe, heel-toe, heel-toe as a record otherwise you put your bloody toe down before your heel and you’re on the floor before you notice.   

 

So I’ve got all sort of tape recordings I run.

 

Where, did someone introduce those to you?

 

I don’t know if somebody introduced them to me. I don’t remember. I don’t think so. I think they’re a hangover from the time when I wasn’t telling anybody and I’d got to walk from here to there in the best way possible when someone was walking along side me. And I just used to count the steps, 10 at a time, heel-toe, heel-toe. And finding excuses, up and then do another ten.

 

I sort of chunk life up in order to get through. So if I know I’ve got a flight of steps to walk up I just instantly think, handle, I think about where the steps go on my foot. Before I had all these tape recordings I was all over the place. But they help, they keep you straight.

Sharon had to pay back her incapacity benefit when her work pension came through.

I’d forgotten about the financial impact. I went to the doctor’s and said, and she said, “Are you all right with all this?” And I said, “We’re running a bit short of dosh.” And she said, “Get thee down to the Social.” So I went to the place you go to get benefit. I’d worked all my life, I didn’t know how to do this. Queued up, my turn. I walked to the door, the window and the woman had obviously had a really bad day, who, she said to me, “What can I do for you?” I said, “I just want to find out about Incapacity Benefit, I think it’s called.” And she said, “Have you ever worked?” I’d just come from work. So I said, “I’m not sure, but does full-time since 1972 count?” 

 

So I got the forms. I applied for Incapacity Benefit and I got it. And then my ill-health pension came in and I had to pay back all my Incapacity Benefit, which was quite difficult because I hadn’t saved it up. And my children find that intensely amusing that their hopeless mother cannot even hang onto her benefit money. But the best bit was when [my partner] got it mixed up and called it Invalidity Benefit. And I said, “No I’m not invalid, I’m just incapable.” So that did not go well.  

 

I, you know, benefit is there for people who need it. And I needed it and it got me through that bit and then the government claimed it back. I can’t quite remember how or why. But it presumably went to help somebody else who was more needy. But money... well it’s one of those things that you have to readjust. Like you had a vision of where you were going to be, I’m going to be somewhere different. At the moment it’s pretty tough financially but then I chose to put all my money into a business. I’m a bit of a risk taker and either it’ll work or it won’t.

 

I’ve got a basic pension from teaching, which’ll always keep the wolf from the door, so I’ll always be able to eat. And that’s a really good financial security although it is fairly basic.

Sharon had gone to a support group but decided that though she was normally quite sociable this was a nightmare.

I thought I would get support, because I’m quite a sociable sort of girl, I love groups, got loads of mates, so I thought I’d go to one of the younger bits of the Parkinson’s Society, maybe it’s me, but I didn’t get on well at all. The thing is being in a room surrounded by everybody else who had Parkinson’s disease was like a nightmare for me.  It felt like the world had gone mad. They were really, really nice people and they were very keen to be really supportive and they didn’t seem to have much of a sense of humour.

 

There was something about reinforcing the fact that we’d all got Parkinson’s. I don’t need it reinforcing, I know I’ve got it. I just want to get on with life. So I came away from that meeting, pulled over the side of the road and had a good cry and thought, “Well I’m never going back there.” But I, I’ve rung the Parkinson’s Disease Society, I have talked to them. We’re all different aren’t we? If they help some people and I’m sure it does and I think the support for the research they do and the journal they publish is super. And the work on the Internet. Yeah, I’ve checked that out in the early days. And the Society wasn’t for me.

Sharon explains what her car means to her and her thoughts about the time when she will no longer be able to drive.

I drive an exceptionally flash car, a soft top with a very powerful engine, a little baby. So when I get in that car I’m not on my feet anymore. I can move like the rest of you. I can overtake you, I can cut you up, I can be mega-aggressive, because that’s how I move best in this life. And it’s a sheer relief, in the car and just feel you can go like the rest of the world. But I’m on a three-year licence and they take advice every three years from my consultant. So you are in a double bind there. Would you tell your consultant you were unsure about your ability to drive? Or would you not? It’s a difficult one.

 

So I, I’m honest as I, I can be under the circumstances. But the idea of not being able to drive again  is what I’m going to have to face in the future, and not one I’m looking at now. What I think I will do is I will organise life so more of it comes to me and, not quite sure how but, for example, I’m not going to buy a little cottage in the country. I’ll probably buy a flat in town.

Sharon didn't tell her teenage children for six months because she didn't want them to start looking after her.

The bit that I was determined to stay in control of was my relationship with my children. Because I knew as soon as they knew about it the tables would turn and they would become the carer and I would become the cared for. And they were older teenagers, they were too young to be doing that. I wanted them to be free to lead their own lives. So I didn’t tell them for six months, I kept it secret. And in the end my girlfriends persuaded me to tell them. They said they wouldn’t trust me again if I didn’t tell them the truth. So I sat them down and just said, “I’ve got an illness that meant I would shake a bit.” So they asked me questions but I didn’t give it a name because I didn’t want to scare them. I don’t know who was kidding who, modern child, hit the internet, and eight minutes later came back and said, “Mum, you’ve got Parkinson’s disease”  So, fine, right, yeah.

 

When I told my children it did definitely alter the relationship significantly. But then they pulled themselves together and got on with their own lives. So that they dip in and out of care for mum. But most of the time they’ve got over that bit and they’re just getting on with their lives which is what I wanted.

If Sharon forgets to take her medication she soon goes 'off'.

And there is a bit where if I can’t find my tablets in my handbag, instantly, because each, the tablets only cover four hours, at the end of that four hours the symptoms come back pretty fast. And so I’ve got to be able to get my tablets. So I’ve always got two or three people who are holding a few of my tablets so that I’ve, just to stop me panicking. And when I go away on holiday the first thing the girlfriend takes from me is a bottle of my tablets, so that I’ve got a bottle and she’s got a bottle. Because then I can relax.

 

So, at the end of the four hours, what starts happening?

 

I begin, at the end of the four hours, when the tablets start to wear off, I begin to ache, the muscles in my left shoulder begin to tense. My left hand starts to shake. My right knee starts to shake. My right leg starts to shake. My voice gets worse. I become unsteady. Sometimes, if I leave it for too long I can’t get the tablets out of the pod. I just give it to somebody and they know it’s one pink, one green. Otherwise there are tablets all over the floor. And that’s happened in more than one supermarket.

Sharon's neurologist explained that she was buying time by starting with the smallest possible doses of medication.

I didn’t find it difficult I wasn’t put on medication because I didn’t want to become reliant on medication. The consultant, if I’d insisted he would have given me medication straight away but I did understand that medication all that time, and I needed, I needed very much to take it at my own pace, just one bit at a time and check I understood and, and there is always the possibility that I could have managed without the medication. I needed time to, once I knew I’d got it, to check what it really felt like, to concentrate and to. Not a great one for taking medication all my life I’ve always been, I’ve always understood they had side effects so I’ve always, it’s a family motto, you stay away from medication if you can. You stay away from doctors and nurses and traffic wardens and social workers and so it is the way you’re brought up, isn’t it? And just occasionally, when I’m very wobbly, I just stop everything and buy myself some time to go back and just rethink it through and to, to be terribly sad and terribly tearful, and terribly overwhelmed. Because you, there’s no point in denying it. But you, you don’t want to live like that, do you? So I buy myself time to revisit it and then I heave a great sigh and think, “Oh right, now let’s get on with something else.”

Sharon longed to be able to do the things she used to enjoy but found the swimming pool guards unhelpful.

I would love to be able to go back to the gym. I’d love to swim hard and fast like I used to. I’d love to dive into the water. I’d love to be able to walk the long walks that I did. I’d love to be able to go back to horse riding. I’d love to be able to ski again. I could do them all with a lot of help and support, some discomfort and what’s the point if you have to do it under those conditions. I am trying to get back to some swimming. I’m trying to get back to some walking.

 

There is a bit where the illness gets, it goes in phases. And you come to a bit where you feel a bit better and I try and recoup some of the lost ground when I feel a bit better and go out for walks and I’m a very physical sort of person, I love to, and I feel in my body, for walking and moving and swimming and riding. And I do feel I want to do it and my body needs to do it. But really I just can’t.

 

And even at swimming pool, getting out of the water. And flip-flops are a nightmare, can’t manage them. I can just about get in but walking along. If you’re walking along the side of the swimming pool there’s nowhere to hang on. So you can’t crawl. I mean, you’d just draw attention to yourself wouldn’t you? But you’d be so much safer crawling. You know, what does it matter. But you can’t. So it’s sort of like quite frightening walking from the top of the steps of the swimming pool to the changing rooms. And my partner doesn’t want to go swimming so you, … And if you say to one of the assistants, one of the girls that, who are the lifeguard, “Could you just give me a hand back to the changing rooms?” They sort of clock you and next time you turn up they keep a beady eye on you. “Oooh, go away.”