Geraldine - Interview 28

Age at interview: 60

Age at diagnosis: 42

Brief Outline: Geraldine was diagnosed in 1990. She was a single parent with three teenage children. She never-the-less succeeded in holding increasingly demanding executive jobs in the voluntary sector and was finally chief executive of the Charities Commission before retiring recently. And she is still working on many projects and committees.

Background: Divorcee with three children. Head of Charities Commission. Retired.Now works between Toronto and Wells as a part-time consultant on social finance and governance.

More about me...

Geraldine, was 40 when she was first diagnosed with PD. She had recently divorced and had 3 young children. During the next few years she continued to manage both family and very busy working lives. For 7 years her only medication was Ropinerole, though while on this she experienced very distressing side effects, projectile vomiting and constipation. As her symptoms gradually progressed Sinemet was added to this. She continued to work as CEO of two major charities various charities ending up in charge of the Charity Commission a non-ministerial government department. As the levels of medication increased she found it increasingly difficult to balance the control of its symptoms against the problems of the disease itself. She found out that animal protein seriously inhibited the absorption of levadopa in the gut and now does much better on a low protein high carbohydrate diet. A year ago when she became very unwell due to infection from an impacted infected wisdom tooth which unbalanced her medication.

 

On retiring from the Commission Geraldine moved to Somerset. Her GP in London had been her mainstay and she was concerned about losing him. A GP has a very important holistic role to play. She was lucky to find a young GP who admitted to knowing very little about PD but who has made it his business to become knowledgeable and learn with her.

 

She has recently been put on Talcapone- a drug banned in America because of its known risk of causing serious liver damage. She has to be checked regularly for this but is otherwise amazed to find herself in better shape than at any time for many years. She recognizes a strong connection between her emotional state and her perception of her symptoms, but though avoiding stress and pressure obviously have a beneficial effect she doesn’t regret having continued in her very demanding work for as long as she did. She still continues to work on various committees and projects but is now more able to accept that some of this is best done at home.

 

Geraldine has become engaged to her childhood sweetheart who has recently come back into her life. He lives in Canada but it is highly unlikely she will be granted immigrant status as their constitution allows them to exclude people with long term medical conditions so at present they lead a complicated life between Canada and the UK. She believes that many PD sufferers are not aware of the benefits they should be entitled to. She receives the higher level of disability allowance, a mobility allowance and a pass to which entitles her to London taxis at a flat rate of £5.

Geraldine relies on a GP who has made it his business to become familiar with PD and the Parkinson's disease nurse.

I found that my saviour, there are two people who saved me really and set me on the right road to coping with it, one was my GP and one was the Parkinson’s disease nurse that I met when I was first hospitalised.

 

But I think, you know, people do need if they don’t have someone they need a an information point I think is is more what they need than anything else. And Parkinson’s disease nurses are one of the best people to give that because they see so many different people with it. They’ve sometimes got a simple solution for a day to day problem that no one would think of, you know. Having said that I now can’t think of one but but they do pass on tit bits of information and I think they move the holistic view to take place. They and the GP.

Geraldine believes that everybody with PD has to take laxatives every day.

Constipation is a big side-effect of many of the pills. And that’s deeply unpleasant in it’s own right, you know, I think that probably gives me more pain than anything else. Everyone probably with Parkinson’s disease has to take laxatives every day because, you know, your muscles are controlled by nerves and so your colon is not pushing things down as fast as they do. Well, that then leads to bloating. So I always wear elasticated waisted dresses or trousers because one minute I can look nine months pregnant and the next minute I can look like a bean pole, you know.

 

And you said your tummy sticks out.

 

Yes, look sideways on. I usually have a not dead flat stomach but I’m pretty skinny and that that will go even bigger sometimes. And it’s so uncomfortable. It’s wind I guess because you’re not digesting properly. Because your colon is muscular and the nerves are not making the muscles work properly.

Geraldine finds her eyes tend to close involuntarily. Her friend, however, who also had PD has been known to fall asleep during a meal.

I get tired but my friend down the road he, I people think I’m falling asleep because my my eyelids like now I can’t keep them open very easily. I either sort of stare and force them open or speak with them closed. But my friend up the road does fall asleep.

 

I he we went to see the lawyer there doing some stuff to the outside of the the green here and if affects our houses so he went to see a lawyer to take legal advice, three of us, and he sat in the middle of me and other man who came, and he fell asleep the whole time we were at the lawyers. And his wife said he falls asleep at the dinner table and his face goes down in his food when she’s not looking, you know. I think that’s a matter of getting your medication right actually. But it can make you drowsy, you know, they all they all affect your liver, they all make you anxious, they all have drowsiness, they all impair your functioning.

Geraldine needed help when she would freeze while out walking and describes how some people responded.

I can go from being perfectly fluid to being stuck like this. I could go through doorways I never got stuck so far, touch wood, about the doorways. But I would freeze in the street in the position I was in, you know, like a statue. You know those people who stand and collect money by not moving. And I I could only move if someone touched me. I touching myself wouldn’t work, someone else had to touch me and that’s difficult to do if you’re frozen because you’re standing there saying because your mouth is stiff too, you know, “Please, will you touch me.” And people are running in the opposite direction because they’re scared really, they think you’re peculiar which you are I suppose in a way.

Geraldine describes freezing while out in the street and why it is a problem getting herself started again.

The early days aren’t so bad but you don’t know what’s coming and anyway no one can tell you because it is different for everyone. But after about seven years I had to start on levodopa because the ropinirole was not enough. I literally couldn’t move. If you see me now I still go on and off my tablets. Not so much, I manage better now but I can go from being perfectly fluid to being stuck like this. I could go through doorways I never got stuck so far, touch wood, about the doorways. But I would freeze in the street in the position I was in, you know, like a statue. You know those people who stand and collect money by not moving. And I could only move if someone touched me. Touching myself wouldn’t work, someone else had to touch me and that’s difficult to do if you’re frozen because you’re standing there saying because your mouth is stiff too, you know, “Please, will you touch me.” And people are running in the opposite direction because they’re scared really, they think you’re peculiar which you are I suppose in a way.

Geraldine continued to hold increasingly demanding executive jobs in the voluntary sector and was finally chief executive of the Charities Commission. She now works part-time, from home.

I think the work was the saving grace and the professor always said that to me, “Don’t give up your work until you absolutely have to.” And I haven’t now, you know, I do I work freelance now but I do things and I get people to come to me now. I didn’t think they would but they do. I thought well, if I left London, you know, that would be it. You’re not seen then you’re not used but people remember you for certain things and it’s surprising how many people live down this part of the world I found out. So and it’s quite a nice place to come to so I am gradually building up, not a business but a range of activities that freelance that I can still do and things that don’t involve physical activity necessarily. Like I write more now. I write articles and things because that I can do even if I’m stiff because I have voice activated software or I have [someone] who comes and helps me out and will I’ll dictate to her on a tape and she’ll type it up for me. So I’m never unable to write and that’s always an escape because whether it’s children’s stories I can write or an article. 

 

And I do keep up with the politics of Parkinson’s really because I think, you know, because I have worked inside and outside government I do know how the systems work and if there’s anything I can do to help other people it’s try and get those systems to work the best way possible. And, bless them, you know, doctors when they go to give evidence give it in such scientific language that MPs really don’t understand. So sometimes they take me along and I sort of wrap it up and try and explain in common sense terms what it means to me, you know. 

Geraldine would love a day off from having Parkinson's disease but knows it is not possible.

A person with Parkinson’s is fully alive but entombed, you know, and sometimes Bob looks at me and he says he can see me in there, you know, just wanting to get out, wanting to break free. Well, just have a day off now and again, you know. I’d even bargain that if I could. 

But you don’t have a day off.

It won’t let you, you know, it isn’t that.

Even when you get your tablets exactly right or.

 
No, because you’re having to concentrate on remembering to get the tablets exactly right, you know. Because I can never just put down my bag, forget my tablets and go somewhere, you know.  Always before I go out the house I have to put these tablets, water, food to eat in between times because they don’t take properly if I don’t.

Geraldine is intrigued by the curious coincidence that several of her contemporaries from university have early-onset PD.

I had a father who had a very high anxiety levels and people with Parkinson’s disease often do have that, not helped by the medication which all have the side-effects of anxiety too. And I had had glandular fever very badly just before I went to university so I had to do my A-levels at home in bed so my immune system was down when I went to university. And while I was at university in Durham there was a lot of hoo-ha about the chemical waste from Sellafield the nuclear plant. So the reason I say this is that because when I was at Durham there was only seventeen of us. We were the first year ever to do a sociology degree there and out of seventeen of us four of us have early onset Parkinson’s disease which is a pretty high incidence when you consider the number overall of people with early onset Parkinson’s disease in the country. So maybe there was something around at that time, you know, and having my immune system weak the chemicals affected me, I don’t know but that gave me something to rationalise it with.

Geraldine had been on a dopamine agonist for 7 years but as her symptoms got worse she agreed to go on Sinemet. The result remarkable.

I said to the doctor, he never pushed me, but I said, “I think it’s time I took levodopa because I’m not coping on this.” And I started on levodopa I can remember it was at Easter and I took a week of it and suddenly this hand which had been increasingly becoming like a crab’s claw like that, then I used to walk with a limp and my hand was bent like this all the time suddenly started moving. I remember thinking, “My hands are moving, you know.” Now this was the levodopa and it just sort of released my body from what felt like a tighter and tighter and tighter constriction. It felt like my body was shutting in on me without the levodopa at that stage. But unfortunately the feeling didn’t last very long. And I thought, “I’m going feel better. I’m going to be better.” Unfortunately, you’re never going to be better but the levodopa worked pretty instantly with me and I was fine.

For many years Geraldine found that finding a time when she could safely eat was almost impossible.

Doesn’t happen for everyone but it did for me, protein attacks levodopa. And if you don’t get your eating schedules right you in fact can undermine the effects of the drug totally. So for me it’s very complex where I am now because I I’m eighteen years into the disease. I’m actually better. I look better than I did at the beginning because I have learned how to manage the medication. But it’s very difficult because I take medication every two hours and I’m not supposed to eat for an hour before I take the medication or half an hour after I eat – take the medication dication. So that leaves me a one half hour eating slot every two hours. So you having a normal meals is not possible. I have to sort of graze my way through the day and that again has social implications because in my job, I worked for the government, I had to do a lot of social speaking and going to dinners and things. And, you know, I could never eat the food and I always was the one that was different.

Sometimes Geraldine will go 'off' soon after a dose of Sinemet.

Sometimes when my medication isn’t working properly when I take my pill as I’ve just done five or ten minutes ago they knock me off rather than turn me on. So I was quite fluid I think when we started having lunch and now if you look my hand is it’s very hard for me to stop it shaking.

 

And it’s not Parkinsonian shaking, it’s a side effect of the medication that makes me ironically shake. And the bit of the half of me that’s not badly affected is now shaking too which it wouldn’t normally do so this seems a double whammy to me. And both stiff and shaky at the same time and my diaphragm is pulling me forward so my stomach bloats. And it means I just nearly choked on a piece of celery I was eating there because I can’t swallow without thinking about it. My voice goes very soft because I can’t volume control it. I can’t speak any louder than this now even if I wanted to. And my face feels very immobile and you know, trying to smile would be difficult. My eyelids sometimes get weighted down and I find it hard to open them again. And I have to think about everything I do so to try to get up, I’ll try to get up now and I can just about do it. But my balance is very - I won’t come too far, because I’m wired up to you. My balance is very unsteady and if I want to walk I can’t pick my feet up you see. I have to walk like this with little shuffly steps. And I was moving around quite normally wasn’t I ten minutes ago.

Geraldine was on ropinirole for five years. She was aware this was not always the first drug to be chosen.

For the first five years of having it I only took Ropinirole which is a Dopa agonist as most people who have the disease know. It is thought, the school of thought that my consultant came from, that if you can stay off taking the Sinemet, (Levodopa) as long as possible then it’s the best thing to do. Others say get in there straight away because it builds it up. You know, you pays your money and you takes your choice, no one really knows. So I had to believe what my doctor told me and I did did manage on Sinemet or Ropinirole or requip as it’s trade name for five years and I took the brand new job.

Geraldine who has had PD for 18 years feels better than she has for years since tolcapone was added to her complicated drug regimens.

My consultant is brilliant. He’s a world expert in pharmacology and he has found me a combination of medication which at the moment works for me. I haven’t driven for five years and I’m now driving again. When I left my chief executive’s job at the charity I talked about, I thought I would never walk again let alone work again because I couldn’t walk and I’d lost all this weight. And I was having panic attacks every day but with the introduction of tolcapone (Geraldine changed to this from entacapone) to mediate between the levodopa and ropinirole overnight I changed, you know. That’s what’s so bewildering. You can just change overnight. And you have to believe then that it will work. You have to try and build the confidence that it won’t let you down.

 

Tolcapone which is banned in the United States and Canada because in the trials there three people I think died of liver failure. It can adversely affect the liver so I have my liver tested every two weeks to make sure that nothing is going awry there. So far so good and the consultant has told me that if I could but get my life together better there’s there is no reason why I shouldn’t manage on a combination of the drugs I’m on now for the rest of my life. I may never have to get to the point of thinking about brain surgery or chest implants or whatever. Although I’ve read about it all and I know what the choices are because I think you have to. You know, you’re fooling yourself if you don’t.

Geraldine's complicated regimen allows her to lead a full and active life after 18 years with Parkinson's disease.

Well, the pills I take are levodopa in the form of Sinemet Plus and Sinemet continuous release at night. And each dose I take of the nine doses I take each day, has a Sinemet plus in it or the one Sinemet CR because that’s the common drug across the lot. Then at different times of the day I combine it with tolcapone three times a day, that’s the COMT inhibitor, ropinirole three times a day, that’s not necessarily at the same time as the tolcapone. But that depends. I vary the ropinirole depending on whether I feel the Sinemet is lasting because the life of the Sinemet is elongated by the ropinirole, makes it last longer. And so if I’m tireder I might front load the ropinirole for instance for the day. Instead of taking one in the morning I might take two and if I feel more tired I’ll take less later on.

 

So those are the main drugs but on top of that I take something called amantadine which is supposed to help you be less dyskinetic from the Sinemet. I am quite dyskinetic today, I’m not usually, but when I’m tired and down a bit then I’m dyskinetic. I take temazepam which is a sleeping pill but again I don’t take it if I don’t feel I need it because I don’t want to become addicted although I probably am. I take diazepam which is Valium which again I take if I feel particularly anxious. And with the Sinemet sometimes what I do is take half a half a Sinemet. If I need a little top up I do that. But what I must never do is exceed I must never have less than an hour between doses and I mustn’t exceed the total amount of what I’m supposed to take in the day. And depending on the circumstances I may front or back load particularly the ropinirole and the Sinemet.

Geraldine feels that academic rivalries hinder the progress of research and that people with Parkinson's disease suffer as a result.

And no common adherence to what is the best combination of pills because its’ manifests itself so differently in different people. And also I’m afraid because academics are trying to win Nobel prizes I think. You know, they don’t share research. They put their arms around their exercise books and say, “Don’t look at mine.” Viz. the embryo embryology debate recently. You know, it shouldn’t matter who does it. So to me, you know, I just want my life back again and yet it turns into great religious debates and academic competitions. And forget about the person who’s has it, you know, you sometimes feel like a rat in a maze. They drop pills into you and see what happens. They don’t know what’s going to happen. You don’t know what’s going to happen, you know. It’s not the kind of adventure you want to undertake too often.

Geraldine described why she decided to register with a new young GP, who has helped her to cope.

My GP here is a young GP, he’s new to the practice. So he moved here when I moved here and I was assigned to one of the more mature ones probably because I had Parkinson’s disease and he was a very nice doctor but, you know, it was just run of the mill stuff. Well, to me it’s not run of the mill stuff, it’s my life, you know, and it’s not a very pleasant life a lot of the time. The young doctor said to me, “I don’t know anything about early onset Parkinson’s disease but I’m willing to learn if you will teach me.” You know, because he said it’ll benefit others. It it’s a learning experience and he is the gate-keeper to the resources I need. So we formed that kind of relationship and he’s been very good, you know, he has access to the small amount of services there are but it’s so diverse across the country as a whole.

Geraldine chooses therapies which suit her particular needs. She now uses yoga to help with her breathing problem.

I do take exercise. I’m about to embark on yoga for breathing because I think, you know, there’s no one exercise that’ll do your whole body. You’ve got to analyse which bits of you are worse and I at the moment breathing is my biggest problem so and then have a go at yoga for that. I’ll try anything alternate because I don’t think it can harm you and, you know, you couldn’t be worse I don’t think, you could only get better. But you’ve got to want to do it, you know, if you let it get the better of you it will.

Geraldine is determined not to give in.

I always carry a rucksack because it helps my balance. You know, if I’m wobbly I hold on to the shoulder straps so that I can stand more upright if I do that because the tendency is to stoop with Parkinson’s disease. And I do use this silly little street scooter which people think I’m slightly eccentric I think because I I probably am. But my sons gave me for Christmas, one of these children’s collapsible scooters. In London they ride them in the city and I scoot. It’s good exercise too you see for your bad leg. Because Parkinson’s always affects people initially down one side. And I feel I’ve had a zipper down the middle, my right side is my bad side, and as yet, touch wood, it’s not very much in the the left side at all.

 

And you don’t have a problem with the balance when you do that.

 

On the scooter. No, you’d think I would have wouldn’t you but I don’t.

 

So which foot is on the scooter, the bad foot or the good foot?

 

No, the good foot. I scoot with the bad foot. So the balance is with the foot on the scooter you see. And it is if I’m not if I’m unable to scoot because I do get to that stage sometimes, I use it like a walking frame. You know, instead of the zimmer frame I hang my vegetables on it and and lean on it and walk. And it just seems more normal again. I don’t want to be another person in one of these little buzzy cars that go around, you know, I want to try and lead as normal a life as I possibly can.