Helen - Interview 40

Age at interview: 39

Age at diagnosis: 33

Brief Outline: Helen was 33 when she was diagnosed with Parkinson's disease. 6 years later her symptoms were well controlled and she was on Rotigotine patches she began secretly gambling on line. When she admitted this and was taken off the patches she quickly lost the urge to gamble.

Background: Placement officer, married 2 children.

More about me...

When Helen was 33 she noticed that first her right hand and then her arm were not working normally. Her GP told her she might have Parkinson’s disease but this was not confirmed by the neurologist and for three years she underwent many tests for brain tumour and for MS. Her diagnosis was finally confirmed when she was put on Sinemet and her symptoms which by now had extended to include her right leg, improved. She was put on Ropinerole which made her violently sick and caused falls in her blood pressure resulting on one occasion in her losing her sight. She was changed to Rotigotine patches which controlled her symptoms very effectively. Some time after having been started on Rotigotine she began to do excessive amounts of shopping on line. When she felt the number of parcels arriving at the house were beginning to be commented on she transferred to online gambling. Though she had noticed mention of compulsive shopping and gambling as risks in the literature coming with her medications and her consultant had specifically asked her if had experienced any problem of this sort, it was not until one year down the line and by the time that she had lost £10,000 that she finally admitted to herself and then to her husband what had been going on. She got an urgent appointment at the hospital where she discussed her problem with the Parkinson’s nurse, and she was taken off Rotigotine. She says that within a week the urge to go online to gamble had disappeared.

 

She is now on Sinemet and though her symptoms are slightly less well controlled than when she was on Rotigotine she is free from compulsive behaviours. She notices that when she forgets to take her sinemet her legs become very rigid and turn inwards and that they don’t relax till 15 minutes after she has taken her sinemet.

 

Her work have been very understanding. She used to be a nursery nurse but was moved to an office job when they agreed that there was a possibility that she might have difficulty handling small children.

Helen finds it embarrassing to have her husband cut food up for her, so tries to order food that doesn't need cutting.

If I’m at a restaurant I’m just very careful what I order. Usually pasta, something soft because this is my sawing hand so and I can’t I can’t slice bread or, so either my husband used to cut it up a lot for me but I find that embarrassing really. So I just don’t eat food that I have to cut. You just, again it’s about pre-thinking about what you’re doing and just making life simpler for myself.

Helen investigated her family history but could find no explanation for her PD.

Well, I’ve talked to my family. Nobody in my family ever had it that we know of so I’ve looked through that, you know, that side of it. I didn’t think, I just think it’s being unlucky really in that I’ve ended up with it but I couldn’t most people end up with something in their lifetime don’t they so I the way I look at it is it’s not going to kill me. Might make me a little bit slower and, you know, disable me in certain ways but I’m grateful that can still live my life very well so.

Helen's tremor was investigated for three years before a trial of levodopa confirmed the diagnosis of PD.

I think after about two years or three years they did try me on Sinemet and it did stop which was one of the things they thought, “Oh, maybe it is that.” And then they offered me another brain scan just to see if the dopamine was present in the brain and it wasn’t or it was very limited so that’s pretty much when they decided that’s probably what it was. But and I don’t think you can ever be told categorically you’ve got it can you. I just think the medication works to take your symptoms away so then they assume perhaps that’s what it is. 

When Helen forgets her tablets she has to allow some time for the belated dose to kick in. The effects wear off sooner than they used to.

I’m not very good at taking pills because I forget. Like yesterday we had a something happened in the morning which I had to go and deal with quickly and I hadn’t taken my tablet and I got to about nine you can feel. It’s a funny feeling comes on but I just had them in my handbag luckily so I just take them. Takes about fifteen, I just have to sit down for fifteen, fifteen minutes until it kicks in but I am not very good at taking them.

 

Do you actually do you forget quite a bit?

 

Yeah. I think I’m somebody who has always got a lot going on both in your mind and in my life and I yeah, I don’t put myself first very often. I don’t think in the morning I’m like, do you know what I mean. That’s my own but it’s not too bad because.

 

I mean does it often happen that you only take them because you suddenly get some symptoms?

 

Sometimes. I mean generally I have a routine in the morning. Monday to Friday is okay because the kids go, I do their lunches and so I tend to remember then, but I am better because now they wear off whereas before it didn’t wear off so it didn’t matter to you either for quite a while. Now, like you said, I suppose I do suddenly get a funny feeling and I think, “Oh gosh, I haven’t had it.” So yeah, probably that is true.

Helen was surprised by what happened to the needles when she had acupuncture.

I do have acupuncture. I do the holistic, I think that’s good, helps me massively.

 

What in what way?

 

It just makes me feel better when I come out, don’t know. They put them in all your points, don’t they, the needles. And when I first did it my hand in my bad hand, the needles it’s amazing. The acupuncturist was amazed. She’s never seen anything like it, the needles spun in massive circles for ages. Like the energy was just completely amazing and by the end of my, I think I had four sessions, the last one they just went in and stood still so and when I come out I do feel better. I feel I’m more less I just feel better. My tremor’s not so bad. And so also I had acupuncture, I think I had something else. I do that reflexology. Stuff like that I do, quite enjoy.

Helen, then 33, was furious when her GP said he suspected she was suffering from Parkinson's disease - though this was not confirmed till several years later.

When I was about thirty three I started finding some strange feelings in my hand. Couldn’t put any finger on it, just they wouldn’t if I picked up a door key I found I couldn’t put it in the lock and using the mouse on the computer, certain things like that, just suddenly my arm it just wasn’t working. It felt it didn’t feel normal. And this went on for about four weeks and I kept saying to my husband, “I don’t know what’s wrong. Something feels strange.” So he suggested I went to see the doctor at six weeks so which I did and funnily enough the first thing he said was, “You’ve got early onset Parkinson’s disease.” Which I was outraged at because I thought, “What a terrible thing to tell a young mother and how ridiculous, it couldn’t be that.” But he was actually right [laughs] long term. 

 

...I think I was very fearful it was a brain tumour. I’ve always been scared of having a brain tumour and that was my biggest fear so when he plucked this out of the sky I just I thought he was a mad man [laughs]. I was very angry with him. I remember going back to my sister’s who was looking after my children for me while I went to the appointment and I was just so angry about it and we we almost laugh now say, “Do you know, actually he was right.” It just seemed a strange thing for him to have diagnosed me with really but he obviously knew his stuff.

Helen says that nothing on earth would persuade her to submit to DBS.

Have you talked to anyone ever about the operation that can be done to you?

 

Yes, I have and there’s no way on this earth that I’ll ever do it. I’m very, very squeamish and it freaks me out. I watched a film of it once and I sat and cried. I never cried ever having this disease and that made me cry. I sat there and cried and cried thinking, “Oh my God.” So no, I’m I can’t say I’d ever, ever, ever have it done. I mean when whether it came to a point where your life was so difficult that you would I don’t know but I just pray they find a better cure to be honest.

Helen has learnt not to be upset when people seem to be commenting on her staggering.

I think you learn to cope with things. I do get the odd comment. If we go out for meals and then or if I sit in a chair for very long I stand up I’m very stiff and I’m unsteady on my feet for a little while until I get the momentum. People comment, “Oh, she’s had a few.” Because we were out for a drink and that’s quite. I mean I almost laugh to myself now because it’s people’s ignorance but I, you know, that used to hurt my feelings a little bit. I think you just get used to it don’t you. People comment and but I’ve had that quite a few times and I don’t drink hardly well, a glass of wine with a meal but I don’t drink enough to be drunk. But people sort of because you’re swaying and not being, you know, normal people’s assumptions on you.

Helen's compulsive shopping turned into secret online gambling with disastrous consequences.

It started off started off with shopping and apparently there are three things there’s shopping addiction, a sex addiction and a gambling addiction and I had the shopping one originally. But people I used to have a lot of parcels come to the door and then people were noticing so I think then it went to I obviously I had this urge to, they say it’s to do with the dopamine isn’t it, the reward centre in your brain or something. You it lacks reward so you over compensate by this addiction to shopping or gambling, you know, to give get a it’s like a short term fair thrill I suppose, I don’t know. And because I think people would notice my shopping more I must have thought, I don’t remember, but I think obviously gambling was more discreet.

 

Did you think there’s something wrong here?

 

I think I did towards the end because it got very bad. I was losing a lot of money in a day, a huge amount of money to be honest and I think something must have triggered in my mind, I don’t know what, one day I thought, “Oh my gosh, what am I doing?” And I just took all my courage to own up but I did and it’s the best thing I ever did because I didn’t realise it was the drugs I just thought it was me breaking down really. And I got very depressed but as soon as I knew there was a reason and that it can be sorted and it was and it was turned around very, very quickly. But because because I can’t now have any drugs linked to that type of thing at all because I’m obviously susceptible to it. So and to, you know, if anybody else had been sat there and told me this I wouldn’t have believed them so so for me to have gone through it is quite unbelievable really.

Helen couldn't at first own up to her secret gambling; it was a huge relief when eventually she did.

And he asked me if I had any problems and I lied and said, “No.”

                          

Because I because my husband was sat there or I don’t and even if he wasn’t I don’t think I would have been big enough to have said actually, “I have a problem.” Because it’s quite a big thing to admit to really. It’s quite I was very ashamed. I’m not ashamed now because I didn’t think it was my fault so I can talk about it quite openly but, at the time, I was very, very ashamed.

 

Well, I it’d be good if somebody else listening can think, “Oh my God, that’s me.” And because it is the best thing to it’s the hardest thing you can ever do, it’s a bit like saying you’ve had an affair isn’t it. It’s the hardest thing to sit there and face somebody you love and tell them something awful that you’ve been doing for so long. But it’s the best thing I ever did and it almost instantly the pressure lifted from my shoulders instantly that I was owned up at least.

Helen, aged 40 finds support from a friend whose situation resembles hers but doesn't want to meet many other young people with PD.

I don’t know anything I deliberately don’t get to see I can’t my friend is into to the Parkinson’s disease society and she does lots with them and she tries to get me to go to the meetings and I won’t I can’t go, I can’t go because I don’t want to see people. I don’t want to be in a room with hundreds of people with it, I really don’t. I don’t mean that in a negative way. It’s just from my for me to get on in life I need just to be me and I don’t want to be faced with what I might become. That’s just the way I deal with and I don’t think that’s hiding myself away. I think that’s just the way I do deal with it whereas my friend get gets a lot of support from it and she benefits from it so that’s works for her. I think people have to do what’s right for them don’t they. So I have a couple we do have fund raising days where I get to meet a few people and that it’s okay. I don’t mind it in small doses but I just do it at my own level really. If I feel uncomfortable then I leave.