Phil
Phil was first told he had mild cognitive impairment but after delays, a lumbar puncture, and scans, he was given diagnoses of Lewy Body dementia and Parkinson’s disease. He was informed by letters which were quite blunt and felt impersonal.
Phil was first told he had mild cognitive impairment but after delays, a lumbar puncture, and scans, he was given diagnoses of Lewy Body dementia and Parkinson’s disease. He was informed by letters which were quite blunt and felt impersonal.
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For Phil, spending time in his allotment with his wife is something he particularly enjoys. He feels that he is not able to initiate tasks as much as he used to. He enjoys gardening if his wife points out jobs to do.
Phil likes walking and reading. He used to repair clocks and likes creating models but his tremor, a symptom of Parkinson’s disease, means that intricate activities like these are more challenging now.
Phil noticed that he was becoming forgetful and couldn’t retain information as well as he used to. His wife also realised that he kept repeating questions, so they had a conversation and Phil visited his GP. He was then referred to the memory clinic and was also seen by a neurologist because they noticed he had a slight tremor. Phil was prescribed Rivastigmine which is administered through patches worn on the skin. He found this made a big difference to his cognitive processing. He also takes Dopamine for Parkinson’s disease.
Taking someone along to appointments helps Phil take in the information.
Taking someone along to appointments helps Phil take in the information.
Talk as soon as soon as you possibly can to those around you that are going to be more directly involved, you know, husbands, wives, partners. I mean I was very, very fortunate that my wife was with me throughout the journey, right the way through, so, and that has been really important, because whilst the message has gone in here it’s also gone in somewhere else and sometimes the message goes in here and doesn’t always stay, or the message do, goes in but isn’t fully taken on board, whereas when the message has gone there, you’re then able to compare and have those conversations. So, you know, don’t, don’t go alone, take someone who is going to do; they, you know, I, I think it’s, take someone who you want to speak on your behalf, if you wanted them to; if you felt as though you couldn’t speak take someone who would speak for you; and I know that that can some, you know, I, I’m very fortunate that can be my, I’m lucky because I, that could be my wife, it might not have been my wife, it might be, you know, your best friend that could speak for you. So, I think, you know, those are the, the bits of advice.
Getting reliable information from support services was helpful for Phil.
Getting reliable information from support services was helpful for Phil.
Don’t panic; I think the very first thing, because I think, you know, that there’s that, you know, it’s like being told, I can imagine it’s like being told you have cancer. You have it and you had it before the diagnosis, you know, so it’s, you haven’t changed as a person, you, you’ve just got a label. I would suggest certainly using the national support services; there are so many, you know, Alzheimer’s, Dementia UK, all of the Parkinson’s, the Lewy Body dementia, they have got, the websites are very rob- I think very robust, and I, that’s from critiquing, I would say, as well as, you know, like the, the, academically I think that they are robust, they, they give sound advice.
Getting a diagnosis of dementia doesn’t change who you are says Phil.
Getting a diagnosis of dementia doesn’t change who you are says Phil.
But don’t, don’t panic, you, you know, it’s, it’s, but it’s, it’s not, you, you’ll wake up the following morning and still be the same person and you just kind of, just get on with it day-by-day. It’s the old adage of if you want to eat the elephant you don’t eat it all at once, just eat it in little bits; you know, having a diagnosis of dementia doesn’t mean that that’s it, you have to have the whole lot immediately, you dip in and out and, you know, it’s been two years since my diagnosis and I dip in and out.
Phil has not reached the eligible age for Attendance Allowance.
Phil has not reached the eligible age for Attendance Allowance.
It’s a very interesting thing about labels; when I got the diagnosis for Lewy Body dementia, the letter went back to the mental health, mental health team, memory clinic, and then the consultant wanted to see me. So, we saw the consultant, I then had a follow-up with the psychologist who gave me this wonderful booklet about all the I’m going to say benefits that you can get; most of it was wrong. But one of the things he said was, “You, you get, you get an allowance for your council tax.” Oh of course you don’t.
Oh.
No, you don’t. A lot of things in this world, you know, that, that; I, well the thing I’ve, I’ve learnt is, is that a label can be a key to certain things, it can also be a key that doesn’t turn, so it doesn’t allow the door to be opened, sometimes it’s a key that does allow the door to be opened, or sometimes it’s not even a key in as much as I can’t get a disabled railcard because I don’t get PIPs.
Right, OK.
So [sighs] so, and that’s, you know, I’m not talking about me personally but if someone, you know; so, in terms of actually people needing support services some organisations have set their barrier, threshold at certain criteria.
Yes. So, do you get attendance allowance?
No, because I am, I’m, I am; can you not tell? I’m only twenty-six. You only get attendance allowance when you’re state pension age.
Although Phil says he is a pessimist, he tries to look for the positives in his life.
Although Phil says he is a pessimist, he tries to look for the positives in his life.
So, I think that, you know, you take the sunshine while you can. However, I am completely a pessimist, there’s no two ways about it. Any psychological profiling of me will automatically put me down as a pessimist. But I think, you know, I, my interest in all of my career has been about emergency planning, doom and despondency, you know. My Masters was in civil emergency management; so, if something’s going to go wrong, I’m already starting to think about the things that – but when it comes to the dementia and the Lewy Body dementia, my view is, yes, we’ll plan for these things, these things may well, you know, having a [sighs] oh, oh see I’ve forgotten now the thing the legal – LPA, Lasting Power of Attorney. So got that all sorted, a Living Will, advance directive, all of those things are, are, are sorted but I still don’t want to go down the route of seeing the negative side to it. So sometimes there are positives; I’ve got a free bus pass which is great. I’ve travelled more now on buses than I’ve ever done in my entire life because, you know, I can do that.
Phil first made an advance decision when he was working in intensive care.
Phil first made an advance decision when he was working in intensive care.
The advance directive, again did that online, and I sent it to, gave it to my GP and the consultants, actually physically gave it. No-one’s ever asked me as to, you know, ooh, you know, but you have dementia. I made it clear that I have got this diagnosis, however that I’m still capable of making those decisions for myself. And I think that I’m probably able to be sufficiently articulate at the moment to be able to argue that.
Absolutely. So how did you find out about the advance directive and what, you know, what made you decide to do that?
Well, the downside is I’ve always known about the advance and I used to, we used to call them Living Wills when they very first came out and a consultant that I was working with, my background is intensive care, critical care. So, consultant anaesthetist who was one of the first people to try to keep pushing for the Living Will. So, within starting intensive care I’d already had a Living Will written.
Oh right.
Because the last thing I’d wanted to be was on a ventilator for however many months, years or whatever; so, I did that. But it was only the diagnosis of Lewy Body that made me hunt it out again and realise how old it was so we updated it.
Phil and his wife thought about getting LPAs after he was diagnosed with Mild Cognitive Impairment.
Phil and his wife thought about getting LPAs after he was diagnosed with Mild Cognitive Impairment.
So, you mentioned there that you’ve got your Lasting Power of Attorney, or Powers, perhaps, of Attorney in place; had you, is that something you’d already done or was it prompted by?
No, it was something that we had thought about once I’d got mild cognitive impairment. It was suddenly, ooh yeah, really must do that, but oh I just never got round to doing it. But then, ironically, grandchildren arrive and things and you then kind of, you’re spurred very much on to doing things. So yeah, so I’m in the queue with thousands of other people just waiting for them to actually issue the Lasting Power. But we’ve, the last lot of documentation indicates that we should be getting it soon.
Yeah, yeah. That you’ve signed it all up and…
Yeah, that’s right.
And how was that experience? I’m just thinking back to your comment a few minutes ago about saying “oh as soon as people know that you have dementia or mild cognitive impairment that” you know, they sort of question your judgement or your ability to make decisions. And I’m just wondering how that experience was if you- did you go and see a solicitor to do that or did you do it?
No, I, we did, made the decision not to go to the solicitors; we had our Will redone or rewritten December-time last year and there was the option then to be able to do it. But we decided, no, it was all online so actually completing it was relatively, I’m going to use the word ‘easy’. The hard part was getting signatures from various people, because you have to do it in a very, very strict and regimented way. So, I fell foul of the, I think it was a forty-day threshold, so I had to do it all over again. But that in itself was, was relatively easy.
Rivastigmine makes Phil feel more alert.
Rivastigmine makes Phil feel more alert.
It’s Rivastigmine. So that made a huge difference to my cognitive state and processing; I felt far more alert, clearer in my mind, recall seemed to be better. So that seemed to be good; unfortunately, it’s, I’m, I think the word I would use is plateaued now; so, I’m on the, that’s, I can’t have any more of that. And so, yeah, but that medication has certainly helped. And I’ve just started Dopamine, so, literally in the last couple of months.
So that’s something you’re sort of, what, what, still testing out to see whether you think, feel, feel it’s helping?
Yeah, yeah, that’s for the Parkinson’s side.
Yes, yes, OK. And did, were, did you have any, any problems with the medication at all; have you had any sort of noticeable side effects or anything?
The, the reason I’m laughing is it was a side effect that I had never even thought about and that was being allergic to the adhesive that is used on the patch, because it’s a patch; and I, when I first got the medication I got one, I got two packs but from different companies, and I put the first one on and after the first couple of days, you, you know, literally the, it, it, great big blister marks; and it was all right because you move it around your body so after a couple of days it went. And I happened to speak to the pharmacist when I went in and said, “Is there anything I can do?” And she said, “Well you can apply some emollient cream,” which I did use. She said, “But actually try one of the other patches from the other company,” and I did that and it, much better, much better. They, they, they’re; I got a little bit of a side effect of; I can tell; it has an advantage because it reminds that I don’t stick it there again, so I shall have to stick it there. So, in terms of side effects that, those are the only things that I’ve noticed with the Rivastigmine; so that’s been really, you know, really, really good.
Phil received his diagnosis in the post.
Phil received his diagnosis in the post.
So, it took probably six months/eight months before I was then seen by the neurologist at our local hospital, who was very thorough, and it was a face-to-face, which was very, very good, I was very pleased for that. So, she did a full physical and she said, “I want to send you for various scans and also for lumbar puncture.” Obviously because of the pandemic it took time to have all of those things done. And then I received one or two letters or, yes, the first of two letters; these letters came from the neurologist to my GP, they were addressed to the GP, I was copied in. The first one said, and it was a two-liner, results of the, and it was the scan, is, is indicative of Parkinson’s; that was it, there was nothing else, there was, you know which was, I thought ooh I’ve, I’ve got Parkinson’s, and there was a slight bit of euphoria, because I thought oh I’ve got Parkinson’s, I haven’t got dementia or anything else like that, I’m, you know, if I’m, have to have an illness perhaps Parkinson’s is mu, is better to have than, you know, Alzheimer’s or anything else like that. And then two weeks later another two-liner letter arrives, again same format, addressed to the GP, from the consultant neurologist, saying, lumbar puncture results indicate dementia markers. So that, at that point, I must admit, I was quite angry, because I’d had no contact with the, my, this, the consultant, hadn’t phoned up or anything; so, I made a point of contacting the secretary and said, “I’ve received these two letters,” and even she was taken back a little bit when she read them; she said, “I’ll make sure that the consultant rings you.”
The consultant suggested Phil went for a second opinion.
The consultant suggested Phil went for a second opinion.
So, the consultant did ring, she was guarded, hesitant, and said, “I,” she said, “well I think the, the important thing is you, I, you need to be seen by, I’d like another opinion and so I’m going to refer you to UCL to someone who’s got a specialist knowledge and they can see you in a satellite hospital so you don’t have to go up to London.” So that was, that was fine and I, we waited for that to happen. She said, “Whatever happens, I will keep seeing you, that’s not a problem.” So many months later we got a letter to see the consultant; am I allowed to say names or should I not?
It’s probably easier if you don’t.
OK [laughs]. So, I saw the consultant, or we saw the consultant from UCL; the very first thing was his manner, which was utterly amazing, his approach; and we were with him for two hours. Now, you know – if you get ten minutes with a consultant, you’re lucky, you get five minutes with a GP you’re even luckier; two hours, utterly, utterly amazing. He did various tests, etc, and at the end of it he said, “What do you want from me?” I said, “Well, you know, I’ve got these results, you know, I, can you tell me?” He said, “You want, of course,” he said, “what you want are the dots joining up?” I said, “Yes.” And he said, “Well I think you’ve got Lewy Body dementia, in fact I’m almost certain that you have.”
The memory clinic practitioners warned Phil that seeking a diagnosis could impact on his employment.
The memory clinic practitioners warned Phil that seeking a diagnosis could impact on his employment.
So I decided to phone my GP service because of my memory and I, once I’d got past the receptionist I got to speak with a clinical nurse practitioner who did the usual, you know, ten, ten questions, I thought well this isn’t going to be of any use because, you know, this is not going to be a problem, and I was quite surprised when he said, “OK, I do think you probably do need to be seen by,” and that, I must admit, did take the wind out of my sails because I thought the questions were relatively easy. So, I thought what on earth did I get wrong to, to kind of merit this? And so, he made a referral to what was then, what is the memory clinic, our community memory clinic, and I went there. I had several sessions with, it was always with two people, with OT and a mental health nurse, for the assessment of my memory state; and I can remember distinctly because as soon as I started talking, they, nine times out of ten they trained at the same university, so they all said, oh you come from so-and-so. So, we’d spend a few minutes, you know, you know, saying how wonderful it was or how bad it was. [Interviewer laughs] And then – they were very keen to tell me, you know, “Are you sure you want to pursue this because there could be a likely diagnosis that could have an impact on you?” And I, you know, but, and I was very clear that, yes I did, because I want, I want to know is; 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.
To begin with, Phil was forgetting everyday things, but it was happening more and more.
To begin with, Phil was forgetting everyday things, but it was happening more and more.
I would forget things; so, going shopping, I would go out for a particular thing and I wouldn’t get that, I would get other things but I wouldn’t get the thing that I was; so, memory and recall, I started struggling with names of people that I knew quite – knew well but on a fairly regular basis and I, it always on the tip, “oh I, I know, tip of my tongue” that type of thing. So, it was [sighs] those types of things but family and friends started also; [wife], my wife, made comment about, you know, “Your memory’s not as good as it, as it used to be and I’ve told you that, we’ve discussed that, we, we talked about that,” that type of thing. Not in a, you know, an unpleasant; it was that kind of, you know, jogging sort of way. So that was kind of like the, the start to it and that was probably the year before the pandemic where I started to think that, yeah, I, is it stress, is it because I’m, you know, it’s hard at work, those types of issues; so, you start thinking, this is everything else, perhaps it’s a bit of old age creeping in and we’ll see how it goes. So that was kind of the initial bits and pieces.
So, those sorts of things that you’re describing, I think a lot of people would say, ooh, you know, that, that happens to me, I go to the shops and I forget what I go to the fridge and I forget what I’m going for or whatever, but it seems to me like it’s sort of, it’s not just a one-off here and there, it, it’s the, all of those things are happening.
No, it’s the repeated nature. So I think, there’s something about having insight into your; I’m talking about my memory, your memory, our memory, you know, you, you might forget the name of someone on the television, it’s just a one-off, but during the course of a twenty-four hour period you wouldn’t expect to have two/three/four different occasions where memory or recall just isn’t, or it’s, it’s just not there; and sometimes those events, those, those opportunities, you, I can do a complete day and everything was fine and other days I’ll have a dozen. So, it isn’t even as though it’s a consistent, it, there could be peaks and troughs between, you know, “ah, you know, this is, it’s been a” you know, I already, thing is you don’t, I never, I can remember thinking you, I don’t have good days; when it, this first started there wasn’t such a thing as a good day or a bad day, there was just days. So, then I now started seeing bad days, bad days when, when I needed more prompts, I needed to ask more questions. I don’t know if that makes sense?
Looking back, Phil had been having hallucinations for longer than he’d realised.
Looking back, Phil had been having hallucinations for longer than he’d realised.
I know hallucinations is something that can happen with Lewy Body; is that something that you’ve experienced?
Yes, yeah, yeah, yeah, and it is quite – perhaps I should have said this at the beginning and I forgot, is the fact that there is, the hallucinations were there but of course you don’t realise that they’re hallucinations because, for me it was animals, so I might see a cat or a rabbit or something like that, and often they were in context. I might have felt or seen someone out of the corner of my eye in the office, a telephone ringing and I’d pick it up and the, but it wasn’t ringing, so they were auditory as well, but someone calling my name. So, so they are [sighs] you don’t know that they’re hallucinations until you start reading the literature [laughs] and people, then you, and people say, “Have you had hallucinations?” “Well, no, I don’t have hallucinations, I sometimes think I see things.” Oh, that’s what you mean by hallucination.
So, are you, when you experience that is it something else that’s there that you’ve misinterpreted?
Yeah, because you see I think when we talk about the word hallucination that may well conjure up seeing things that are abnormal with Lewy Body dementia some, they’re often normal, they’re not frightening and [sighs] the, you know, the presence of somebody else, it’s not something that, you know, I get frightened with, ooh it’s a ghostly apparition or something like that, it isn’t, you know, I see the cat going across, then I look again and the cat isn’t there.
OK, mm hmm.
Yeah, and the auditory ones, you know, the phone ringing, you just think oh I must have just misheard something.
Phil contacted his GP because of his memory problems.
Phil contacted his GP because of his memory problems.
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.”