Fred - Interview 30

Age at interview: 70

Age at diagnosis: 65

Brief Outline: Diagnosed with Parkinsonian syndrome 5 years ago. This condition is only partially responsive to Dopamine and is therefore difficult to treat. In spite of a steady deterioration in his condition Fred remains active and cheerful.

Background: Married, 3 children, Retired director of BBC monitoring.

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Parkinsonian syndrome was diagnosed 5 years ago after Fred had noticed some difficulty keeping up with others when walking. He was warned that this condition was less easy to treat than regular Parkinson’s disease. During the last 5 years his condition has steadily deteriorated so that now he has a shuffling gait and has a tendency to festinate, it is an effort for him to speak which makes conversation difficult and he has to make an effort to keep his eyes open while he is talking. As he has a tremor in his left hand he has to eat with his right hand and does occasionally choke on his food. While the drugs he takes (Sinemet plus, Stalevo and Amioderone and Rivastigmine) do not succeed in removing his symptoms on rare occasions when he has forgotten to take them his symptoms have been noticeably worse. When he is in bed his symptoms do not cause him any problems and he is able to imagine that there is nothing wrong with him.  He has been reluctant to accept physical aids like a chair lift or an electric chair and has maintained considerable independence. He completed a Diploma in the History of Art and to do this he had to travel by bus and even make excursions with fellow students. With his wife or family members he continues to go to operas, on holidays abroad and for walks in the park. He continues to drive but feels it appropriate to undertake specialized testing for drivers with neurological disabilities.

Fred wishes it was possible to know more about what is in store for him.

You have no concept what you’re letting yourself in for, you have no concept of the endgame. The books talk about the condition, and how to handle the condition. And as such they’re very good. But they don’t talk about the, the end of the road. And that’s one thing which does worry me increasingly. How, what happens? What is the final prognostication? Death comes to us all, but not, I’m sure Parkinson’s doesn’t kill you. But what will your state be in about five years’ time?  That’s what I want to know. I don’t think anybody can answer that question, but it’s something which preoccupies me.

Episodes of choking embarrass Fred and alarm those around him.

I enjoy food. I eat very slowly. My left hand cannot really take a fork. My left hand, when it exerts pressure, does wobble about and sprays food all over people. So I have to be careful. I tend to eat like the Americans do, with the right hand and a fork. It takes me a long time. There’s a danger if I don’t chew, cut up and chew things, meat especially, I will choke. And there’s one or two episodes of choking. And it produces great alarm around the table and great embarrassment to me. My mouth, which has lost the power of control to a certain extent, and then drooling is a problem, can be a problem. It means that I tend to spill things down my front at lunch or tea or supper just completely involuntarily. I now wear an apron and a bib a la Francaise and it keeps my shirts relatively clean. But it’s, it’s a problem, which I wouldn’t disguise, but I manage to keep up with most people.

Recently Fred has found his eyes are closed involuntarily most of the time, though if he makes an effort he can open them wide for a little while.

Well, this is a relatively new symptom. I don’t know what’s causing it. I haven’t asked. But my eyelids tend to close down. That’s very awkward because people think I’m going to sleep. I’ m not in fact. It may be something to do with the light. I doubt it. There’s not much light today. It may be something to do with concentration, the effort to concentrate the eye. I’ve no idea.

 

Do they just close of their own, of their own accord?

 

Well, I have to...

 

You don’t think, “Oh, it would be nice to have my eyes closed now”?

 

Well, there’s certainly that. But my pilates teacher says I must keep my eyes open for the sense of balance and there’s no voluntary action closes the eyes as I’m doing now. It’s very much involuntary. But I appreciate how rude this must seem to some people, but it helps me say what I want to say and concentrate, I believe.

Fred regrets that parties no longer hold the charms he once enjoyed.

Yes. I remember in the early days I used to go to cocktail parties. Couldn’t hear or make myself heard above the general chatter. And I had to sit down. So gone are the days when I could chat up women at parties. I just don’t like them any more. Cocktail parties.

 

Yes, I, yes, it is a, a problem. Not that you haven’t got things to say, but you can’t get it out in conversation quickly enough. People talk and exchange very quickly, very smoothly, get their ideas out. I can’t do that any more. I can think these things but by the time I’m ready to say things the argument, discussion has moved on a great deal.

 

I mean you come on to the question of being a burden and pity. I don’t want to be a burden to, to anybody and therefore would forgo certain social occasions if I’m going to be a burden or if people are going to pity me and talk to me from a sense of duty or pity. That I hate. I’d much rather people treat me as I am, for what I am, and not out of a sense of pity or duty, if you see what I mean.

Fred describes what he has been told to do to avoid festination.

Well, my walking, my mobility has become far worse and deteriorates even now. There’s a tendency to festinate, which I believe means tipping forward and building up speed as you walk, shuffling. You are taught ‘heel and toe’ the whole time. And logically you should be able to do it. And somehow the movement, forward movement takes control. And this is where you can have your falls as you suddenly pitch forward uncontrollably. And the feet which act as brakes very well don’t work. So therefore you’re looking for somewhere with a soft landing, a sofa with a soft landing, like a sofa, clutching to a wall or a lamp post to keep you upright. But then you can stand up straight, head and eyes open and walk about 20 yards or so. But then you start to festinate again. It’s a terrible bore.

Fred emphasises that his thought processes are ok, it just takes a long time to express them.

Oh, no. You lie in bed and you feel perfectly normal, you know, as if you can get out of bed and go and walk normally and do all the things that are completely normal. And so therefore, ideas formulated in your head, you don’t have the time, the energy to, express them. I suppose that’s what I would say. So it’s quite an effort to speak, to, speak clearly.

 

My conversation with you has been fairly free. And flowing. I managed to choose the words I want to use which is important to me because words are. I’d like to be able to speak more loudly, more quickly. These girls that phone up on the phone I can hardly keep track of them they’re so fast. It tries my patience on the phone.

Fred had seen people overwhelmed by their role as carer and was determined not to let this happen to his wife.

Well, the council came round and assessed my needs and provided rails on the stairs and raised the height of the bed and the furniture and looked disapprovingly, as they all do, at the rugs on the floor, because they’re worried about tripping. And generally we’ve got a private occupational therapist, who is advising us on things like electric wheelchairs and other specialised equipment we might need. But I’m moving my study, we are moving my study from the top floor to the ground floor to avoid me having to climb the stairs. But I’ve got great help at home with a Brazilian lady, who’s around most of the time.  But my wife is very keen to increase the number of hours of the carers. 

 

Because without the carers helping out, she would have no life of her own.  She’s enormously stressed, my wife, and therefore needs respite.  I’ve seen this with my sister-in-law married to my half-brother, fifteen years older he would be 85 and she can really take even with the carers, so much of him before she goes dog mad with stress.  So it’s important to bear in mind your partner’s requirements and to avoid overstressing her.

Fred who was still driving found that having a disabled badge had advantages; there was a lot of help for people with walking difficulties.

Well, the disabled badge is about the best thing you can have, because it enables you to park practically anywhere...

 

Within my own borough it’s particularly helpful because you can use it for three hours in any bay, whether it’s ordinary parking bays or residents’. And because I’m a student I got permission to extend it into the so-called green zone, which in my borough goes right down to central London. And then there are the other disabled parking spaces, which enables you to park outside the National Gallery. All major galleries, both Tates, have special parking allocated for the disabled.  And in Tate Modern you have wheelchair buggies, electric buggies, and in the National Gallery you have wheelchairs. So they’re very user-, friendly towards the disabled badge holder. Terrific advantage. Wouldn’t do without it.