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Diagnosing PCA

Ken, who has posterior cortical atrophy, describes his route to diagnosis.
I guess this was the best part, of three years ago. I’ve used private medicine for years on the logic, not that it’s superior, but that I could afford it, and it was much more flexible for me. I noted that my sharpness, my ability to do mental arithmetic for example, was less good than once it had been. And I had no tolerance of that. And I said, well, I’m just beginning to have less good, basically, memory and ability to handle numbers. Muh! And you know, these things happen. You’re getting older, we all are. Nothing to be done. Just get on with it. And I said, well I’m quite anxious about it. He said, well let’s leave it for six months.
And of course, he whacked in the normal, usual bill. And six months later, I went back and said, I don’t think this is going to clear up. So okay, we’ll do an MRI scan. We did the scan. The scan came back. I went in to see him. And I said, what does it show? He said, oh, what you’d expect, a bit of brain shrinkage. I said, bit of brain shrinkage? You’re joking. No, no, no, he says, perfectly normal, perfectly normal. And nothing can be done about it. No point in doing anything at all. No. Forget about it. Go home. And slapped in another bill. I decided at that point that this was not the response that I needed and wanted.
And I decided privately to sniff around. And I was recommended to Michael Lum at University College, University College Hospital.
I went to see him privately, and I took him the brain scan, a copy of it. He refused to look at it. He said, no, I’m going to diagnose you on the basis of our conversation. We’ll then have look at the scan together, and we’ll see whether the scan supports my analysis and diagnosis or counters it. Turned out that he said, I am virtually certain that you have a variant of Alzheimer’s disease that effects the rear of the brain. And it has limited impact, at least in its early stages, upon memory and things of that kind. But it does make it more difficult for you to judge things.
And he then arranged for me to see Professor Cipolotti who applied a 500-question cognitive test and concluded that the areas in which I was strong were the ones that she expected. And the ones in which I was weak were the ones that were impaired by the form of Alzheimer’s that I received. I went back to Michael and said, well, what do we do? He said, well, I’ll tell you what we do. In this hospital, we have the best unit in the United Kingdom, run by Professor Fox.
And so I’m going to drop him a note right now because he will be fascinated, one, by the fact that you actually are a rarity, because there are not that many people with your variant. Also, the fact you appear to be compos mentis, and you are therefore useful for research and so on. And that’s where it went. A lot of people have a really slow route to diagnosis. So we’ve heard the story again and again of people going, for example, to a High Street optician because they think it’s a visual problem. Must be something wrong with my eyes. Maybe I need new glasses.
But because they pass simple tests of eye health, sometimes being referred back two to three times trying new glasses or other tactics. Sometimes it’s misrecognised as well because people are often younger at the time when symptoms begin. So sadly, we’ve had lots of people where it is difficult to distinguish sometimes between anxiety, because people’s insight is very well preserved into their difficulties, to say, is vision the first problem? Or is anxiety the first problem? So often a circuitous route between opticians, general practitioners, and then eventually finding their way, perhaps, to a psychiatrist, or most particularly to a neurologist who perhaps has seen this before, or at least recognises that there’s a degenerative component.
This isn’t just sort of a static problem, but one that is getting worse over time, and therefore indicates one of these rarer forms of dementia. I think the impact of PCA is very varied on one level, because PCA is defined by relative preservation of memory and insight. Some people, I remember Terry Pratchett, for example saying of all the types of dementia, this is the one to get, because the sense of self is very much preserved relative to some other dementias.
The flip-side of that though is it’s grossly disabling because we interact so frequently with the visual world in almost every task that we do, and because the difficulties go beyond vision into sort of our general understanding of where things are, and how far they are away from us, and how we interact. So even things like dressing, which you and I can do with our eyes shut, someone with PCA wouldn’t necessarily be able to do because they wouldn’t necessarily be able to perceive where their arm is relative to the jacket, for example. So I think it’s grossly disabling. And lots of carers say, with a tiny bit of help, my partner can do everything.
Without that help, they can’t do anything on their own. So even really basic things like finding the light switch to turn the lights on, or knowing which door is which to get to the bathroom rather than the kitchen can become very difficult for people. So I think as a huge impact on everyday skills. It means that most people have to stop working. And I think it’s because of just the sheer difference between what you were able to do before and what you’re able to do afterwards. I think it has a lot of impact on mood and your sense of who you are as a person, your sense of independence, your ability to contribute to your family life, and so forth.

Ken, who has posterior cortical atrophy, describes his route to diagnosis.

This involved undertaking a number of different tests and brain scans over a long period of time. We also hear from Prof Sebastian Crutch why people with PCA often have a long route to diagnosis.

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The Many Faces of Dementia

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