It was, but also at that stage she said to me, “Well Howard has Alzheimer’s.” And I said, “Well I thought he had dementia.” She said, “Well he has, he’s got Alzheimer’s.” But you see – we, I didn’t understand, I now understand dementia is the umbrella name, as cancer is, and the type of dementia Howard has is Alzheimer’s, so, and we’re reasonably intelligent people but I had not twigged to that and nobody, you know, nobody actually sort of explained to me, and I now know there’s like ninety to a hundred different types of dementia.

And he said, “well there is some cognitive impairment” and there’s only, there’s, the statistics showed that it was about a 50-50 chance, either that it was just Mild Cognitive Impairment, as I get older or it could be dementia and Alzheimer’s probably and the only way to find out was to have a PET scan.

So, the PET scan happened and the neurologist went away on holiday which was very inconvenient of him [laughs]. But eventually, I rang the hospital and said “can I find out the result” and they actually emailed me and said “you’ve got Alzheimer’s” [laughs]. And some people might say that’s a dreadful thing to do, but actually for me, given who I am, and what my approach to this is, it was absolutely fine because by the time I saw him, which was a week or so later, I had time to process it.

So, what was the diagnosis that you were given?

Barbara: Do you remember?

Ray: Was it – well there were two things weren’t there?

Barbara: Yeah, you know what they were?

Ray: Yeah, but I can’t remember what they were called.

Barbara: [Laughs] It was, it was mixed dementia, Alzheimer’s and vascular dementia.

Lorraine: Well [name], one guy there, he’s ten years older than Derek and he’s got vascular dementia, but he helps Derek [laughs] and he’ll do you cups of tea.

Derek: Yeah.

Lorraine: And he just looks out for Derek, which is nice.

Derek: Basically with, with the cup of tea, it, if I, if I make one myself and then I try and put it down, I don’t know whether I’ve took it too far along and then.

Lorraine: Oh it’s.

Derek: I look back and it’s all on the floor because I’ve missed where I should have put it.

Lorraine: With, yeah, with the PCA Alzheimer’s, you know, it’s to do; like, you know, edges of tables can be a problem. In fact, I found a very good film on it the other night, didn’t I?

Derek: You did, yeah.

Lorraine: On the internet – was it; oh something, I Can See You, or something like that. But it was very interesting about the actual PCA.

Derek: Yeah.

Lorraine: And listening to people with PCA Alzheimer’s, describing how they see things, and the ultimate thing that’s said at the end by one guy is, “I can see but I can’t see,” and; because obviously the messages from the brain for Derek, so such as judging distance for things or even reaching out for something can be difficult for Derek.

Derek: Mm hmm.

So, which came first, the diagnosis of Lewy Bodies or Parkinson’s?

Right, so I can tell you the entire story; would that, would that help if, if I told you my, my, my entire diagnosis?

I didn’t think, I didn’t think I had dementia, I didn’t think I had Alzheimer’s in particular, I, let’s, let’s say that I didn’t think I had Alzheimer’s and I had all of the tests, was then seen by the consultant psychologist within the community mental health team who said, “Well I think you’ve got mild cognitive impairment; however I also would like you to be seen by a neurologist because you, there is a slight tremor and I think it would be useful.”

Eric: I mean I know my brain isn’t working as well as it used to. I just feel uncomfortable with it sometimes.

And so did that sort of prompt you to go to the GP about it? 

Eric: Well I went, well I was having trouble with balancing, wasn’t I, and?

Ros: Yes.

So, is there a, was there a connection to, you said you were sort of feeling a bit wobbly, is, is there a connection between those things?

Eric: I think there is a, there, it’s, it’s happening, I mean things are changing, I, I know, and I’m really not able to do what I was able to do before, which is a bit disturbing.

Ros: It was the beginning of Parkinson’s, which includes being a bit unsteady, but really, really.

Eric: It’s my walking I’ve got.

Ros: Walking, yeah.

Eric: Noticed and.

Ros: Mm.

So, did you – have you had a diagnosis of Parkinson’s, is that the?

Eric: I think I’ve had a definite, haven’t I, been told I’ve got Parkinson’s?

Ros: Mm, cognitive problems.

Eric: Oh yes, cognitive, well, well. And I’m supposed to do exercises every day and, and try and do, remember to do things. I, it tends to make you a bit unable to do things [laughs] that sounds a silly thing to say – things that you think you didn’t think, think about, twice about in the past you find you’re having to work at and it, it just doesn’t come out right and I think you think my judgement on things changes.

Ros: Yes, it has.

Do you want to describe what you mean by that?

Eric: Well, when you’re making decisions about, well say, say moving there’s a lot to decide and I’m pretty awful at that sort of thing now. And my, my job was a lot to do with decisions when I was doing it and I think I did it reasonably well [laughs], but I couldn’t do it now, I no way I could tackle being an actuary now.

We did go, [wife] and I went to see some bloke across the other side of [City] but I don’t remember who he was now, and indeed it wasn’t until perhaps a week ago that [wife] reminded me that we’d seen this fella.

Ah that’s where we learnt about mild cognitive whatever it is.

Impairment?

Yeah [laughs] impairment. I find, I’ll have to, I’ll have to, M, mild, see I’ve already forgotten; MCI, is it known as MCI?

Sometimes, yeah.

I’ll have to remember it as MCI then, it, it’ll, then I’ll be forced to remember it, you know, like a crossword puzzle [laughs].

Yeah. So, so that was maybe?

That was about a year ago now and in the hope that what he might be able to advise would help my memory, but I’d just forgotten, to be honest, until recently I’d forgotten all about the fact that I ever went there. I don’t know whether, see I was always a keen do-it-yourselfer [coughs] always a, excuse me, always a practical hands-on sort of guy and, you know, when you’ve got things to think about like that you, you don’t have time to worry about your memory dissipating or sort of going do you?

I knew that when you got older that you couldn’t remember things; it was something that people always said to each other, you know, “Ooh, I can’t think, I get upstairs and I can’t, I, what have I come for?” sort of thing. But I was realising that I couldn’t remember things from a min, a second ago, in my head, I’m going to do that now, and I, I thought that was really strange, you know, that I; this wasn’t like normal, like just going upstairs, it was like I needed to do that, it was important, and it was only a second ago I thought it and then it’s gone from my memory.

I found that I was missing my words and, really badly, and forgetting people’s names that I was sitting opposite. It would be that sort of thing that really got to me. I mentioned it to my husband at the time and he said, “Oh no, no, everybody does that, don’t, don’t worry about it, don’t worry about it.” I said, “I am worried about it,” I said, “it’s not just normal.” And so, I went down to the doctors and I said, “I’m really worried about this, I can’t remember things.” So, I was put on a, given a test that they give you at the doctors and I was fine, and they said, “It’s not your mem, it’s not your, your memory, it’s your tablets, you’re on such-and-such, Pregabalin makes you forget, it relaxes the nerves in the body, you have it for your neuropathy because it relaxes the nerves and then it; so, you don’t remember things as well.”

Well, when I went to see the, the consultant of neuropathy he said, I told him about it and he said, “Oh you’ve got, you’re not to worry about that, that is your tablets.”

I think I won’t give into it until I really, really have to. And it may not be Alzheimer’s, it may not be dementia – it could be, it could be just accumulative, just masses of stress, it could be my diabetes, but I am a coward when it comes to the mind things, yeah.