Parkinson's disease

I think a big part of it is trying to avoid people’s pity, and people very nicely are keen to help. But sometimes you can land up sitting next to somebody at a dinner party, it happened to me at a wedding reception the other day, an old friend who was, you know, clearly upset when I picked up a wine bottle myself to fill my glass. “Let me do it for you”. I wouldn’t mind having my food cut up discreetly occasionally because actually battling with chicken breasts, why are there so many chicken breasts these days? hacking away at this stuff. And it would be quite nice to actually have a prior arrangement with the kitchen or to bring a large pair of scissors with you on outings but be seen cutting up the chicken that way. And the general sort of feeling that you’re being regarded as a ‘cripple’, awful word.

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.

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.

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.

The main affect that I have is the side effects of the tablets, which I’ve always had on all the drugs that I’ve taken, which is tiredness. About an hour to an hour and a half after taking the drugs, the drugs that I’m taking, I get this deep yawning session for about fifteen minutes where I’m yawning my head off and, tears stream out my eyes. And round about four o’clock in the afternoon I quite often feel like I really, really need to go and have some sleep. And after about half an hour, I feel okay again. So after each, each, I take tablets three times a day, about an hour after each one I get this yawny, yawning session. Real tired feeling, watery eyes. That’s the way it affects me.

Whenever you go to the doctor or the specialist and you say, “I’ve got this symptom, that symptom.” They, they seem to quite easily, this is not a criticism but it seems that a lot of these symptoms that you can have in your body are attributed to, to Parkinson’s. Sometimes I think they say it if they don’t know what the problem is, you know, let’s blame Parkinson’s. But that’s a harsh thing to say, I don’t really mean it in a harsh way. But that’s the main problem that I have at the moment is, is tiredness and sleepiness. I was in a meeting yesterday, a team meeting at work, and my boss was presenting and I could hardly keep my eyes open. You know, I know that can happen in meetings but this was ridiculous because I had to walk out the room and get a coffee, you know, it’s a bit embarrassing.

 

That’s right. That’s true but it happens more if I’m sitting at a desk working. If I was to be, for example, putting some shelves up in the house or digging the garden it seems to pass easier. It’s more to do with sitting still and particularly reading or, a book or a screen, seems to, that seem to be the time when it, you know, takes a grip. So it, so the recommendation to anybody else would be to keep moving, keep active.

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.

I had speech difficulties before the operation, the kind of Parkinson’s patients often find, I spoke too quickly so I tumbled over the words, and I spoke too quietly for people to hear, I’ve always been quiet of speech, and I am still, but it was worse when I was definitely a Parkinsonian.

This is a different set of speech problems yes, I’m still too quiet and one of the ways my speech therapist tries to combat that, she says, she says it’s not particularly helpful to try to think of articulation as something to aim for, what she usesis volume, that one should try to be loud. Apparently if you have Parkinson’s you think you’re speaking at a level that is normal but in fact it’s below normal, so if you aim for something, something that seems to you to be too loud you’re likely to hit a normal level of speech.

The tongue and the lips articulating is a problem, getting the breath right I don’t, I think there’s something psychological about it as well as physical. I don’t know if I can explain why I think that. Emotion certainly comes into it, if I get angry with someone on the telephone my speech gets clearer and louder when I express that anger. When I’m telling someone about something important to me I’m likely to be able to speak better than if I’m just saying, “Pass the salt please.” So I think, I think there’s a complication in the speech form which I don’t fully understand.

I’ve naturally had a rather far back voice. I learnt how to project it to give a lecture or to talk to actors, when we were producing an opera but if I’m just thinking about it, by myself in a conversation with two people I speak with a low voice. Partially because my parents quarrelled and I didn’t like the sound of raised voices. But, for, twice a week I went over to two dear ladies at the local Infirmary, the hospital and they, they got me reading phrases which came from common life, “Can I have a cup of tea?” “Has Jane rung yet?” Phrases you actually use, which I had to repeat until I almost went crazy. And I found as long as I was saying something fairly simple I could make quite a lot of noise and get my voice going in a way, sinuses here. Singers have a very rich buzzy sinuses and the, they take the voice up into it. And I found that I observed some singing teaching in a remarkable lady that my wife went to and she took me on with another pianist as a kind of dummy to, to see if she could get us to sing better. She gave me up, she said I had a Knödel, a dumpling in my throat. But I suddenly recognised the value of what she was saying. And if I could open the, the back of my throat I made an area there where the sound could mix and go up into the, behind my nose. And then again she said the, the sort of valve here which you can open, you can’t normally control it but singers can do it with a kind of sniff. Ahhh, ahh. And you get that tremendous buzz. But I, I, I found it a very, slightly unnatural, very unnatural, slightly unnatural way of talking when I just want to talk. And I have to think all the time of, speaking loud enough for the person in the next room to hear.

No.

It’s, it’s the voicebox, yes. But then the throat is affected of course and you get, it’s difficult to swallow when you’ve had Parkinson’s for a long time. And that’s often what gets you. It’s not a mortal disease.