Last week I interviewed an exceptionally lovely theatre director. At the end of our discussion he turned the tables and began to ask me warm, genuinely interested questions about my own life and work.
Very few interviewees do that. It’s as if journalists are a special breed of automata who don’t have mortgages and dogs like everyone else. And anyway they’re usually not interested. In fact it’s quite common to spend two hours in close conversation with someone and then be completely ignored when you see him/her at an event the following week.
So it was rather uplifting to tell this nice man a few things about myself and what I do in real life. And of course I ended up mentioning the presence of Ms Alzheimer’s in my marriage and home – it simmers near the top of my mind almost all the time even when I’m working.
Most people, as I’ve said before, immediately launch into an account of someone close to them who have died horrendously of the illness. Not this charming man who clearly had no experience of Alzheimer’s at all. “Oh dear” he said. “I’ve heard that’s a ghastly disease. What causes it? Is there a cure?”
What refreshing questions. I hadn’t meant to go into details but of course I found myself trying to explain Alzheimer’s which was useful because – as every teacher knows – the best possible way of straightening something out in your own mind is communicating it to someone else.
It’s easy to say that nobody knows what causes Alzheimer’s. Actually we do. Amyloid proteins in the brain clump together to form Amyloid plaques – look at the large coloured blob on the right of the photograph at the head of this blog. That’s an amyloid plaque. It’s sticky. And it’s very bad news. What we don’t know is why this clumping business happens in some people and not in others.
I’ve read dozens and dozens of theories in the last 15 months since My Loved One was diagnosed, many of them based on very serious, reputable scientific studies. Is it linked to diet? Or lifestyle? Or smoking? Or alcohol? Or whether or not you do mind puzzles? Is there a correlation with depression? Could it be hereditary? Is it triggered by drugs taken for a different health problem?
None of those fits MLO’s profile. What about regular migraines which he used to suffer from quite badly in his twenties and thirties? As far as I know that possibility has not been explored but perhaps it should be.
On and on it goes. Scientists are doing their best (although there’s still too little money spent on Alzheimer’s research) but we’re not really much further forward. Even the drugs prescribed to hold back symptoms for a few months have been around for decades.
Then a day or two after my chat with Mr Theatre Director came a study reported at the Alzheimer’s Association International Conference in Chicago which could – just possibly – be a turning point.
Eight hundred and fifty six patients in US, Europe and Japan, all showing early signs of cognitive decline were given fortnightly injections of BAN 2401 (no, I don’t know what that is, either). There was a control group in the experiment too who got a placebo. Cautiously described by commentators in the know as “encouraging”, the results show that this drug improves BOTH the physical changes in the brain tissue and the symptoms of the illness. And that’s a first.
Of course, even if the research is corroborated via much larger studies and the drug, or something similar to it, is eventually licensed it will come far too late to help MLO. But I cling to hope for future generations.
Meanwhile MLO isn’t getting any better, as I say in my understated, double negative, English way to all the kind people who routinely ask.
On Sunday I wrote a birthday card put a stamp on it and said: “Could you pop over the road and post this for me, do you think?” I do this on the grounds that it’s vital to keep him involved and feeling useful although it’s a job I could have done myself in about 3 minutes.
He disappeared upstairs for 10 minutes, having apparently decided that he couldn’t walk the 150 yards to the post box in his sandals and needed to put on a pair of lace-up shoes. Then he asked whether I’d be here to let him when he got back because he struggles with locks. “Yes I’ll be here but please do take the keys from the hook because it’s feeble not even to try” I said. He trudged off.
Fifteen minutes later (he really does walk very slowly now) the door bell rang. I found him outside failing to open the outer porch door with the car key which was on the same ring.
Heavy, heavy weather. That’s life with Ms A as she tightens her grip.
Photograph by Simon Fraser/Science Source