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Diablog Number 1: On Diagnosis

Posted in DiaBlog with Larry, and Support and Advocacy

 On Diagnosis: Elizabeth Peel in Conversation with Larry Gardiner

In a series of six blog posts I talk with Larry Gardiner. Larry describes himself as a Change Agent, Co-producer, Citizen Advocate, Gentle Irritant. He is in his early 60s and has memory disorder which falls under the umbrella of younger onset dementia but, he tells me ‘the diagnosis for what ails me has been re-described as “stroke sequela” which is an acquired brain injury presenting in many respects like the cognitive impairment that leads to dementia’.

I first met Larry at a ‘Dementia: A National Crisis’ conference in late 2012. He was instrumental in encouraging me to fundraise for YoungDementia UK – an Oxford-based charity which provides him with support and he also volunteers for. He is also actively involved with Dementia Adventure.

On a warm spring day I interviewed Larry who shared with me his experiences and views – or rants as he puts it – on numerous topics: the diagnostic process; human potential, being and engaging in the world; the distinctiveness of younger onset dementia; the importance of communication, interaction and meaningful engagement; the “bigger picture” and how people with dementia are represented and treated in society; his views on research; anti-psychotic medication. 

What follows in this series of ‘diablogs’ are themed exerpts from our bigger interview. I enjoyed our conversation, I hope you do too. Thoughts and feedback very welcome.

Liz: So, maybe if I start by asking, you know I’m sure you’ve told this story so many times now, but can you tell me how you came to get dementia?

Larry: I’d started to get symptoms that I recognised as being troublesome around when I was fifty, but I think I probably had impaired cognition and memory disturbance earlier than that. The watershed was I kept losing my car (laughs). I’d park it somewhere and couldn’t remember where I’d parked it. So, just short-term things were the first things I noticed, but could still function quite well most of the time.

On the diagnostic process

I’ve been engaged, um, in the diagnostic process, it’s lasted years, and years and years…at that time I had three school age children, I had a marriage, I had a career, a bloody good job, a salary, I had a mortgage the size of the bloody titanic… I kept going but then my employers said “well you’re just not working to your pay grade anymore”… I kept forgetting things, like clients saying “well you know, you said you were going to do something, when are you actually going to it?” Well, of course, I’d forgotten I said I was going to do it.

Then I started having these transient ischemic attacks, I’ve probably had quite a few of them. There’s five that I remember of episodes when something dire went wrong, that at the time, I didn’t know what they were. I thought oh, you’re over working, you’ve got to slow down, they told you to slow down (laughs)

I used to be really pleased with my brain (laughs), I used to be astounded with the things it could hold and thinking about quite big things, or every aspect of quite big things all at the same time. I was chuffed to bits with my little self, but um, I just couldn’t keep it up.

They did MRI scans and there’s no gross abnormality of the brain, there’s no bilateral atrophy and there’s no sort of big lesions or anything like that. You just see where the blood supply had um

Liz: been cut off?

Larry: been cut off, that’s what I wanted to say (laughs). And um, that’s how some brain cells died.

Liz: And just to come back again to the time around diagnosis what kind of services or support did you receive?

Larry: Bugger all, bugger all. …So, you see somebody, they prescribe you something and then they discharge you…So I have a bee in my bonnet about this and I have a little rant if you let me

Liz: Oh do.

Larry: Okay so this is my little rant, it goes like this. If you go to your GP and you go “I have problems with my memory and cognition”, they will refer you to a memory clinic and you’ll see probably a registrar at first who’ll do like a screening, like a triage, have you really got problems that they are interested in looking at. And then after you see the registrar a couple of times and the lots of silly tests, then what they’ll do is do some sort of screening to screen out functional disorder like depression, anxiety, or organic like um, things like aneurisms or tumours or things like that. Physiological problems just in case.

So they’ll do tests, take pictures of your brain and stuff like that, they’ll do that, and they’ll make you do memory tests and stuff to sort of take a baseline. And then they will repeat them periodically to see if there is any progression, so every six months you’ll go back and do those same tests again. Those things, so with young onset dementia, so if you ask me “do I know who the Prime Minister is, I do, do I know what the day is? Not so sure about the day, the date? A bit sketchy, the month? Mmm, I think we’re in April”. That sort of thing. So, when they do these screening tests, what usually happens they say to people with young onset dementia, you’re doing really well. If there’s something wrong with you I don’t know what it is and they, if the registrar, saves their integrity, says “you’re puzzling me, but we’ll have another look”. Um, if they are really snowed under with work, really, really busy in like a big city, you’ll probably get discharged, sent home and told that you’ve got depression. I still function really, really well compared to lots of people who I live amongst… I’m still somewhere in the middle, I’m not an outlier. I still function really, really well I just can’t remember stuff and my organisation is chaotic. Doesn’t mean I’m not bright, just means I can’t manage it. So, and that’s one of the reasons why some people with young onset dementia takes years and years and years. Because they actually wait until you are old enough to show some other symptoms, before they’ll say, oh yeah you’ve probably got so and so, you know…the medical way of doing things is a sort of diagnosis by exclusion.

It’s of no earthly use to me that they do that, because even when they do hang a label around my neck there’s no cure, it’s a progressive degenerative disorder, there are very few medicines and they only work for some of the people whom are suited, so the only medicines which seem to help are the ones which work with Alzheimer’s type dementia which are the most prevalent. But it doesn’t help with other types of dementia and it really only works with a small proportion of people with Alzheimer’s and they have to be at a certain point of their journey. Give it to them too late and you’re wasting your time, give it to them too early and you can’t see a clinically significant effect. Might help, might not. So, GP’s tend not to do very much because, there’s nothing in my tool kit, there’s nothing I can offer.

The importance of social support

What I would prefer to see is, if it looks like a duck and it quacks like a duck, and it lays eggs, it’s probably a duck and it doesn’t matter whether it is a blue duck, a red duck or a yellow duck, it’s a bloody duck. If somebody’s got problems with memory, cognition, organisation and whatever have you, put some social support in because they need that. Just put the social support in, put that in early. You’ll keep people at home, you’ll keep families, you’ll keep people functioning in society, they’ll have a life worth living, they’ll probably last a really long time. The more engaged we are the less depressed we get. I think depression kills more people with dementia than dementia symptoms do. We get despondent we get despairing. So put the social support in and stop sodding around, paying hugely inflated salaries to sit there and pontificate over which flavour of ice cream you’ve got floating in your brain. I mean I don’t begrudge them their salaries, I wish I was still earning a good salary. …Their diagnosis doesn’t help me.

And that’s all for now folks.

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2 Comments

  1. Larry Gardiner
    Larry Gardiner

    I think I must have left out something I wanted to say. I have met so many good people who started out in their respective professions wanting to do good things. Many of them have been thwarted by a rationing of resources that has left them acting as gatekeepers to those resources being rationed. In most cases these same individuals are probably more unhappy than I am. In most cases they are left handling their own distress at not being able to do what they were trained to do, with an additional dollop of my distress on top of it. I don’t know how they cope.

    May 31, 2014

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