Parkinson's disease

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.

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.

Yes, it’s, the impression you give, you’ve got a job, it’s like, just slurred, everything’s all slurred. If people have never met you before, they’ll probably think, “Oh, Christ, he’s drunk.” Like I’ll give you an example, I went in a shop the other day in the morning. Because I weren’t too good, I was, you, you tend to drag your leg a bit, and your arm, people with Parkinson’s when you walk you don’t, my arms always straight down at my side. When I walked in this security bloke come up to me, he said, “No, you can’t come in.” I said, “Why not? I only want a packet of fags.” “No, you’re drunk mate.” Of course you’re ready to just blow your top. But anyway luckily I knew somebody who worked in the shop and she come out and explained to him. And of course he was all apologetic then. 

I can give another example. My eldest boy, it was back, oh, about a year or so ago, he walked, we had the garage door open and he, he accidentally walked into the garage door and gashed his eye. So I took him to the local hospital. Then because my speech was disturbed and slurred because I was concerned about him. The more frustrated I get, the worse it becomes. The receptionist, we was in this room waiting to see about his eye. I thought it strange that they come in, both of them come in the same room and he sat down and he said, “Do you want to tell us the truth now?” I said, “Pardon?” “You hit him.” I said, because they interviewed him as well, did I hit him? I said, “I can’t believe I’m hearing this.” He said, “The receptionist said that you was, you was, your speech was slurred and you staggered in.” So I said, “I can’t, I don’t believe you, you’ve asked me that.” So I said, “All right, I’ll tell you this, because I’m going, I’ve had enough of this now.” I said, “I’ve got Parkinson’s. I brought him in because he walked into the garage door, like he’s told you, and you’re accusing me of hitting him.” Well, of course they bent over backwards then, didn’t they? They wanted to know all about it. I said, “I ain’t got time for you.”

I go out every day for a stroll and before I could walk better earlier on than I do now because obviously I’ve progressed but I could walk maybe a mile or so, you know. So I’d get the bus into town, it’s local town where we lived, and I’d just have a bit window shopping, pick up a bit of fruit and veg or whatever, you know, just so I wasn’t stuck in the house all the time. And it was about eleven o’clock in the morning and I had a carrier bag with a bit of fruit and veg in it and I and I tripped over a kerb and fell. And of course the anxiety of falling makes my tremor worse than it is so I’m now half on my hands and knees, because my arm’s shaking and not being able to speak properly. 

 

And an old lady came up to me, was on a walking stick, must have been well in her sixties or seventies, came up to me with a walking stick and I thought she was going to be helpful. And what she did was she poked me in the ribs with her walking stick and said how disgusting it was that I was drunk at that time of the morning. And, you know, and I thought but It I it bothered me at the time. I managed to scoop myself and get myself together and got a taxi home. And I was a bit concerned about it at the time. But afterwards I thought it’s really quite funny, you know, but yeah, I suppose some people could find that quite traumatic and that’s one of the things people think like, you’re drunk because I don’t walk in a straight line, you know. Or stagger a bit or whatever. That bothered me at first.

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.

The thing I find is that, this is weird but, some of my friends don’t come round and see me anymore because they feel awkward. But they shouldn’t feel awkward because I’m still the same person, I’m no, I’m no different to the person that was before he had Parkinson’s, but, they feel, awkward, and then there’s some that are treating me for who I am which is great, you know? But I’m, I don’t like to be treated no different really, no, and I don’t treat anybody no different who, who is, who are impaired by whatever disease they’ve got or disability, I treat everybody as an equal and I think you should always treat, treat anybody.

 

Does he take sugar? Well, the does he take sugar attitude. I mean is that the radio programme called on the radio used to be called, “Does he take Sugar. Because that’s what people do. And one particular incident like that sticks in my mind was I went to a well known pharmacist where I got all my tablets from. And I explained to him that one of the problems I was having was ninety per cent of my drugs came in blister packs and whoever put Parkinson’s drugs in blister packs wants their head examining. And that I hadn’t got these timing boxes at the time so I what I wanted was some a tray with the doses in at what times they had to be taken and all that. And I was talking to him and I said to him, because sometimes I can’t remember what time to take my medication or whether I’ve actually taken it or not so having a tray I would be able to see that the slot was empty and then know that I had taken it. And as soon as I’d finished speaking, he looked at my wife and said, “Well, we can provide you with a tray that does.” And he wasn’t even talking to me. And I… I was absolutely I couldn’t say anything. I was I was fuming inside but I thought I thought, you know, is it what is it my perception of what’s going on that’s wrong or is what this man’s doing is wrong that not even speaking to me, you know. Like people in a wheelchair and you and you talk over the top of them to the whoever is pushing them or whatever, you know. 

My mum rang me every day from the nursing home, “How is she? What’s going on?’ And asked me what was her symptoms. She went from being seventy eight with Parkinson’s and not really and most of us not really thinking anything and then saying, “Well, what are her symptoms? What are they saying? What medication is she on?” And it was almost like it revived all her information and news that she knew about everything. Very I think I said to her the other day that, Jack had to do something, having extra lessons of, you know, something to do with potential dyslexia or border line. “Oh, and what is he doing and how is he doing that.”

I think that’s particularly true the difference as as family there’s a big difference you perceive between how the person with Parkinson’s is with you on a day, daily, twenty four hour a day basis and how they are with new faces. And I think that applies to the mask and it applies to lots of other things as well. But there’s something really horrible when you’ve had a large dose of the mask, somebody not smiling at you. Not warming to things you’ve said, jokes you’ve made, just sort of getting you’re getting that tired face. A new face walks in through the door and immediately it gets a warm smiling greeting.

And the hand that is shaking when pouring you a cup of tea is dead steady when pouring the visitor a glass of wine. And it’s really hard to feel that that’s not an insult to you, the family. And I think we had a lot of that and sometimes were able to say, “Well, that’s how it is.” And sometimes were impatient, showed that we were insulted.

I can talk a bit more about helping. One of the things about Parkinson’s because it’s variable, because you keep moving from stage to stage is that it’s really difficult for carers and family to get the hang of how much to offer help. On the one hand you’re trying to allow somebody to be independent, on the other hand they want to do something faster. There are different answers at different times. Eating, particularly, is tricky. You don’t want to be seen to be chopping up somebody’s food for them. On the other hand Humphrey found that mealtimes could be a nightmare particularly in other people’s houses because he could choose to have items of food which were easy to spear on a fork or put in a spoon but cutting up food could be difficult. So we could chop it up for everybody but if he went to somebody else’s house and was presented with a large chunk of meat that he couldn’t deal with was he to ask his next door neighbour, what, should I go and do it for him? Again, hard to get right answers and he’d quite often, you know, in a buffet or something choose the thing that he could eat other than the thing that he fancied. 

 

Dressing was another one. He wrote a song called, “Putting on your socks.” Because putting on socks was really, really hard. Again, I think my daughter found a gadget called a Soxon which helps you put on socks. But the point was that it was something he could do. But the whole palaver of dressing including putting on socks in the morning took so much longer than he wanted to allow it. It was not an important enough activity in the day to take that much time.

 

There’s nothing I, I can, nothing I hate more than, than the thought of someone pitying me which is, pity is just, just, terrible to contemplate and whilst I know that pity it comes out of probably comes out of a good, a good thought rather than a bad thought, it’s just, you know, it’s, [sighs] it’s well, it’s a very difficult thing because, you know, when I talk about patients but actually patient, the word patient has a, I don’t mind being called a patient, words are just words but, but, but actually the word patient implies something to, either sympathise with or, or to pity I think.