'To not believe your own eyes is a very strange feeling'
In Dementia Action Week we talk to well-known Northampton journalist Willy Gilder about living with his Alzheimer's
By Sarah Ward
For more than two decades Willy Gilder entertained and informed listeners of BBC Radio Northampton.
His enthusiastic outside broadcasts, special way of making complicated issues sound simple and warm interviewing style made him a firm favourite with listeners.
Sadly in 2019 after a bout of mental illness, he retired from the station and has moved to Scotland, where one of his two sons is living. Recently he has been diagnosed with Alzheimer’s.
“I’m at the top of a hill and I don’t know whether I’m looking over a steep cliff or a gentle slope.”
That’s how Willy describes living with Alzheimer’s. It’s now six weeks since he was diagnosed and he is learning to adjust to becoming the person whom he calls Willy Gilder mark II.
He describes the process of what is happening to his body as a reverse metamorphosis, like turning from a butterfly into a caterpillar.
The brain disease, which affects around 850,000 people in the UK, is slowly killing off his brain cells. For him it is the parietal lobes (the part of the brain above the ears) that have been eaten away.
There is sadly no cure and the reasons why someone gets Alzheimer’s are unknown. What is known is that proteins in the brain cause brain cells to die, and the existence of these specific proteins within the brain is how the illness is diagnosed.
There are various hypothesis about what causes the damaging proteins to develop, including lifestyle and air pollution, but there is no definitive answer.
For Willy, he knew for some time before he was diagnosed that things were not right. He explains:
“I suffered from depression and because of that I went into hospital in Northampton. During the time I was in hospital I began to feel that there was something wrong, that wasn’t depression and I couldn’t really figure out exactly what this was and it seemed to me that there was something organic going on.
“I said to the staff ‘there is something going on’ and they gave me some psychological tests, but I did really well in those tests, so they were saying things like, ‘well your memory seems fine and you’ve done well in these tests and are not particularly old’ and I would go ‘yeah but I feel there is something wrong’.
“However when I moved up to Scotland and I had a follow up with the mental health team here, the psychiatrist I met said ‘oh that’s intriguing’ you have apathy’, (which is one of the symptoms I had) ‘and your depression does not seem to be lifting, I think we ought to send you off for a brain scan’. So he sent me off for a CT scan and that showed that my brain has shrunk over all.
“It seemed that there was something going on that was making my brain shrink a bit. He then put me in for a Spect scan - it shows where blood is flowing and crucially where it isn’t flowing. That showed there were bits of my brain where the blood was not flowing as well as it should do, which suggested a bit of a problem. That was in the parietal lobes - the bits of your brain above your ears - they do things like control your sense of up and down and left and right and they have a bit to do with visual processing and a bit to do with language processing.”
Willy was then referred to a neurologist at the Anne Rowling Regenerative Neurology Clinic in Edinburgh (founded by J.K Rowling in memory of her mother) and sent for an MRI scan and a lumber puncture. The lumber puncture detected certain proteins within his cerebral spinal fluid which are a tell tale sign of Alzheimer’s. The neurologist confirmed to Willy he had the disease.
He says the diagnosis was a bit of a relief. He had been certain for the previous 18 months something was wrong as he had become a different person to the one he had been before, but he didn’t have an explanation for that difference. Now he had a name for it - Alzheimer’s.
But Willy’s symptoms are not what people would stereotypically associate with the progressive condition. His memory is still fine (this function is controlled by the hippocampus, and this part of Willy’s brain is still working correctly) instead his eyesight has been affected. He sees things which aren’t there.
“About six weeks ago my vision seemed very disturbed and I discovered I had lost all sight in one eye. Now that came back but it left a large grey blob in my vision. If I shut my right eye I can see this light grey ragged blob in my left vision. It is there all the time but is generated by my brain - it is not actually in my eye. That was a bit peculiar and took a bit of getting used to.
“Then a few weeks after that I was having a shower. I looked down at the shiny white shower tray and I could see that all the hair on my head had come off.
“I thought that’s a little odd, but actually it was not that my hair had come off. It seemed that the shower tray was covered in hair. And then I realised the same thing happened when I looked in a white wash basin or a white toilet bowl. It is as if all of those surfaces are covered in light grey hair. Last week they changed colour.
“First off all they went green then they went blue and this week they are red. Now I just accept that I can see it but it is not there.
“But, to not believe your own eyes is a very strange feeling.”
The great unknown for Willy is whether memory problems will develop and he says nobody can tell him at what speed anything might happen. He thinks the disease has probably been ticking away for a number of years, perhaps as many as fifteen.
“I was talking to someone who works with people who have dementia and she says dementia is a terminal illness but that doesn’t mean you're dying.
“It’s very easy to get hung up on thinking ‘this is the end of my life’ and it's hard and difficult to think actually this is a different type of me.
“I can’t do what I used to do, I can’t drive - I used to love driving around the county - I can't organise myself as well as I used to and I have found that difficult to cope with, but the more I meet with other people and the more I engage with activities that people put on, the more I think this is Willy Gilder mark II.
"And so I'll be Willy Gilder mark II. I was thinking the other day it’s like a butterfly turning into a caterpillar and you can see that as a dreadful thing, or you can think - hey now I’m a funky caterpillar”.
The way Willy, who is 68, is also coping with his condition is finding out all he can about it.
He has copies of his brain scans and is planning to have them printed on a t-shirt. He is on a low dose of medication (to treat the neurotransmitters, which is making him feel better) and has become involved in working with other people who have the disease - research shows that keeping active can help stave off a decline.
In Scotland he has rediscovered his passion for creating art - a love that had deserted him for a year - but through listening to music (a known therapy for Alzheimer’s) the passion has now returned.
He wants to do as much as he can to raise awareness of his disease. He has started a podcast about his Alzheimer’s and has a blog. He encourages anyone who suspects something may be going on with their brain, or who thinks they are becoming forgetful beyond the norm, to talk to their GP and to friends and family.
“I cannot do anything about this illness,” he says.
“I can’t not have it - it’s here and now I’ve got it I’m going to make the most of it. I’m going to be as active as I can and I’m going to spread the word about it. To sum up what I’m trying to say - everybody with Alzheimer’s and dementia is different than someone else with it.”
There are a number of organisations in Northamptonshire that can help if you think yourself or a relative may be suffering from dementia. All the details are here
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Thanks so much for Willy sharing his experience with Alzheimers and thank you for publishing it.