Did they have to test you to see whether you were swallowing OK?

Oh yes, yes, they did.

Some people might wonder how that happened. How did they test you?

Well, they, they, they would give me a sip and would say, ‘Now swallow it slowly and if theres any problem swallowing don’t take and I was just doing exactly what they were telling me and I was OK.

Swallowing therapy. They’d get a wee bit of water and try to get you to drink it but told you to pull your chin in when you were doing it, you know like that. Because it helps for it to go down easier and it did. So that’s the first think I can remember of it, but it was really, they were really good girls because I say I couldn’t, I couldn’t eat, I couldn’t drink, couldn’t do anything. Couldn’t talk, they were really excellent. Must have been because I’m here sitting talking today, you know what I mean. So, your diet built up gradually. It started of it was quite watery, quite, like soups and things like that and then they started putting the Thick and Easy in and that thickens things up for you so you can maybe, like a mashed potato or, you know, a wee bit of something more solid and just built me up bit by bit until I was up at , number D where I could take soft mashable, what they class as soft mashable, foods. And I was having no bother at all with it, you know. But really, really good.

WifeBut his speech was affected because of the ataxia, it’s the muscles round the mouth not being able to move properly that’s the cause. And swallowings affected, so we had to, he has to have everything thickened now.

HusbandEating tends not to be a problem but swallowing drink is difficult.

WifeWell, to start with, you had to have your food mashed up.

HusbandYes. But not now.

WifeNo.

HusbandNow I think the problem basically is that if a drink hasn’t, isn’t thickened I tend to cough a lot. If liquid trickles down from my mouth into my lungs, they can’t do anything about it, so they, they insist that all my drinks are thickened because then my mouth knows to shut the valve to the lungs and, and it means basically I can’t drink fizzy drinks because thickener doesn’t work in them.

How do you find having to have the thickened drinks?

HusbandWell, you, it’s like so much, you learn to get used to it. I would, would prefer not to but in another sense I think if [my wife] is happy to add the thickener, it’s better to accept it because actually it doesn’t put any more pressure on [my wife] and they said they’d try and do some more tests sometimes and I had a couple of tests early on with a barium meal and they took x-rays of my throat to see what I was swallowing and they decided that it didn’t change. I’ll probably at some stage need another test but until then I’m quite happy to put up with it. It is a problem more because my wife needs to remember it whenever we go out.

WifeI have to have my little pot of white powder in my handbag if we want to drink out anywhere.

HusbandAnd like lots of these things, you know it’s there and it is different but you learn I suppose to put up with it.

Can you explain the reason that you had to be on the liquid diet?

Well, I saw the speech and language therapist who came along, put the stethoscope on my throat and asked me to swallow and I think I had to have a drink and assess my swallow reflex and it was my swallow that wasn’t very good and I think the concern was if I had any solid food that, that it might get trapped and I might choke to death. So they said, no, I had to have a liquid diet, puree diet, so that was that, so that was the reason so I had to have this puree diet. So the plate would just have different coloured splodges around the plate basically, dependent on what it was that you were eating but I think the worst was Sunday lunch where you’d have a brown dollop of sludge on your plate which was my roast lamb I found out, then a green piece, piece which was the, the cabbage or the peas and grey which seems to be the colour of potatoes in that particular hospital and I would be eating, you would expected to eat that, but I used to take the lid off, put the lid back on and say, ‘You can take that away, I’m not eating that. I used to ask my wife to bring food in for me and my other visitors and they’d mostly bring chocolate bars and desserts from supermarkets.

A peg and they didn’t feed me through that but they had set it up so as they could feed me through that if it was necessary’ So thank God, it wasn’t because I didn’t fancy the idea, you know.

So they never, you never had to be fed through that?

No, never. And I had it on for ages and ages and ages and then when I left the hospital’ just had to come home No, wait a minute I went to a nursing home and I still had to have pureed food, you know, but it was a long, long time before I got, was able to eat anything solid, you know. And so I had this thing in here all the time. It’s only about 2 weeks ago since I actually visited the hospital that I, this had been put in about’ 6 months ago and then’ I was’ I was sent home and then I had to come back to have this thing sorted, you see and it was quite an operation it was really. Not very nice and they left me with precautionary tube in, you know. Well, it was in for about 6 months and never used because I got my voice back’ and, so in the end, I, the last appointment I had at the hospital, I said, ‘I want this out’ and it was [laughs] don’t know if you’re interested but [laughs] he was a Greek doctor’ and I, I said, ‘I want this out’, ‘Oh’, you see, he was horrified, you know. He said, ‘I’ve never done that before. I said, ‘Well, I want it out because it’s doing nothing and it’s, it’s just having, making it, things awkward for me so there was two nurses standing by and they said, ‘Well take it out. Weve done it before. So they just’

Took it out?

Took it out. Mm hmm.

Do you remember having it put in? What was it like having it put in?

Well, it wasn’t very nice because they had, they had to make a slit to push the tube in, you know, but it didn’t bleed very much. It was really’ but it was a terrible pest. However, I was determined to do all the things I was told to do.

But a relief to get it out?

Yes. So it’s out now. Not long. It’s only a few weeks since it came out and it’s great.

How about, you know, going out socially, going out to eat, perhaps with the problems with your arm, you know, do you have any issue with that at all?

No, but I, people know that they have, they have to expect to cut my steak, I can’t cut my steak.

Does it have any influence over what you choose to eat or?

Mmm, it does, it does. Theres a particular, theres a steak and kidney pie on offer at a gastro pub fairly close by which can be eaten with a spoon [laughs], and so I don’t have to get. I mean knife and fork are my great bugbear. Chopsticks aren’t so bad, knife and fork really quite tricky [Laughs].

[Laughs] Not many people would say that about chopsticks [Laughs].

Well if you can manage chopsticks in the first place you only use your right hand after all and so it’s easier for me. And obviously I haven’t given up from every being able to use this again [slapping sound].

Yes [laughs]. Yes. Yes. I’m alright. I can’t speak but anything else very good.

How about your eating? Were you able to eat OK?

No’The

You had a

Yes. (Illustrating – drop in right side of face)

‘ a drop.

Yes.

And did they have to put a tube in to feed you?

No.

No?

No.

No?

No. The, the I was alright.

You, you could eat.

Yes.

And maybe did they liquidise your food?

No.

No? [laughs]

I, I want’ No. Oh yuk, oh dear. [Makes sound]

Proper food. [Laughs]

[Makes sound] Oh dear, oh dear.

And how was your swallowing?

Alright.

It was OK?

Yeah.

They, did they get you to swallow and ‘

No.

‘ do a test on you?

No. Mine is right.

But it just, just your face ‘

Yes.

‘ with chewing was difficult.

And this. (Illustrating hand weakness)

And that.

Deborah’ Mum’s taste changed with the stroke. Whereas Mum would like Madras curries, Tabasco and hot sauce, [also] strong cheeses, those can’t be on the menu anymore. You find those too difficult to eat, don’t you?

Stella’ Yes. The cheese is too sharp.

Deborah’ Yes, so the stroke has affected Mum’s taste buds, and things that Mum used to love – like she used to love fish, Mum would eat meat and things – those are things that you don’t like to eat anymore.

Stella’ No, I don’t eat those anymore, fish and meat, beef. We had roast beef the other day, the day before yesterday, but I couldn’t eat it. They were nice slices of meat but I couldn’t eat them.