"My memory started to let me down"
Diagnosed with Alzheimers, Wendy Mitchell is adapting her life to compensate for the parts of her brain which aren't working as they used to, taking part in clinical trials and research, she is raising awareness of this cruel disease and writing a blog which has become her memory
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7:05AM BST 17 Aug 2015
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I had always been renowned for my brilliant memory - for names, dates, facts and figures. Until I reached my mid-50s, that is, when my memory started to let me down.
I’d recognise the faces of colleagues but could not remember their names, even though these were people I’d worked closely with for years. Embarrassingly, I’d forget the simplest of words in meetings. The worst episode came last spring when I left my office and just didn’t know where I was or to whom all the voices around me belonged. It was then I knew it was more than just normal memory problems associated with ageing.
I was once a very private person but now want to shout from the rooftops and raise awareness of this cruel disease
The diagnosis of Alzheimer’s was made this time last year by a neurologist after a nuclear imaging scan showed an area of my brain wasn’t functioning as it should. It was July 31– a date I will never forget, despite my memory problems. I was 58 years old, otherwise healthy and working full time as an NHS manager St James’s Hospital, Leeds. Although the diagnosis was devastating it was also, bizarrely, a relief: it finally put an end to all the uncertainties I’d been having over the previous 18 months.
Last week, researchers at Bournemouth University found that dementia is being diagnosed in people a decade earlier than it was 20 years ago. No one really knows why this is happening. I think in my case, as in most, it was totally random. I was doing all the right things for my health – I don’t drink, didn’t smoke, used to run regularly and had a good diet.
Every day is different now. Some days I feel bright and my brain feels clear. But on bad days, a fog descends on my brain and confusion reigns from the minute I wake up. I liken this feeling to the process of untangling a necklace. If I’m feeling calm, I can patiently untangle the knots and work out what day it is and what I’m supposed to be doing. But if I panic, it’s like being impatient with the necklace, so that the knots get worse. When this happens I feel as if my head wants to explode.
While I would love scientists to find the elusive cure, it is also equally important to research the best ways to live with and care for someone with dementia
At these moments I tell myself the fog will clear eventually so I’ll just quietly sit and wait. It’s a bit like a game of chess – you sit waiting for your opponent to make their move and then try and outmanoeuvre them.
I loved my job but took retirement in March so as to enjoy being me while I still could. I also had to give up driving as I’m no longer able to process information quickly enough. But I still carry on doing the things I love. Walking is one, although I have to go more slowly. I still love reading too, but I now only attempt short stories as I can’t follow the storylines in novels. Writing is my other passion and I’ve started a blog as a way of recording all my thoughts before they’re lost. This blog has become my memory.
I’d lived happily alone in York for some two decades, and still do. Independence is very important to me and I don’t have any help. Instead I have the support of two lovely daughters – Sarah, 34, is a newly qualified nurse and lives in York while Gemma, 31, in her final year as a PhD student, lives in a village 45 minutes away.
Author Sir Terry Pratchett who died at the age of 66
Despite how my life has changed over the past year, I remain very positive. You can still live life to the full if you accept that changes will need to be made to compensate for the bits of your brain that no longer work as well. There are so many simple strategies to cope with daily living – the clock I have that tells me the day when I wake up; a weekly magnetic calendar that sits on the fridge and tells me what I’m doing each day; ear plugs that dull the harshness of noise in the street; reactalite lenses in my glasses that reduce the harshness of light. All of these make a difference.
As soon as I was diagnosed I knew I wanted to be involved in research trials so I got involved with the launch of the new national database, Join Dementia Research. This enables people to register their interest in participating in dementia research and matches them to suitable studies. If only clinicians could see the positive impact being involved in a trial has on a person’s well-being, maybe they would promote the opportunity more.
In the last year I’ve taken part in a trial at the West of Scotland Universitylooking into the experiences of people with dementia in the workplace. My workplace had no experience of supporting employees with dementia and I was able to help NHS Employers, which represents health service leaders, draw up new guidelines for doing so. The Alzheimer’s Society has also published the first guidance for employers, which will help other workers (although this has come too late for me). Helping people with dementia stay in work as long as possible is important as the age of retirement gets higher and people are diagnosed at a younger age.
Although the diagnosis was devastating it was also, bizarrely, a relief: it finally put an end to all the uncertainties I’d been having over the previous 18 months.
I’ve also been testing a new app being developed around facial recognition, as well as taking part in clinical trials. For one trial headed by King’s College London I am taking an antibiotic called minocycline, which is currently used to treat acne. It is thought the drug could reduce inflammation of the brain in those of us living with Alzheimer’s disease. If it doesn’t work, at least I may be free from acne.
The recent findings on solanezumab, a potential new treatment thatcould slow the progression of Alzheimer’s, were encouraging but there is still a long way to go before the drug is proven to work and then made available to patients. I’m not naïve enough to think it would benefit me. After all, who knows what stage my brain will be at in two to three years’ time? However, it does bring hope for my daughters and their generation. At the moment I take a drug called donepezil, but it’s hard to say how effective it is at slowing down progress of the disease.
Research doesn’t just mean drug trials though. While I would love scientists to find the elusive cure, it is also equally important to research the best ways to live with and care for someone with dementia for the 44 million people worldwide with the condition.
No-one knows at what speed my own condition will progress. I was once a very private person but now want to shout from the rooftops and raise awareness of this cruel disease. I’ve spoken all over the country at conferences, universities and the House of Commons, and been on the radio and TV. Some quite remarkable opportunities have come my way since being diagnosed – I call these the “advantages of Alzheimer’s”. Having coffee with Julianne Moore at the premiere of Still Alice in London, for instance, was not to be forgotten.
Julianne Moore in 2014's Still Alice
If someone newly diagnosed asked me for advice, it would be not to panic. Not to give in. To adapt and find new ways to compensate for the parts of you that don’t function like they used to. See it as a challenge to outmanoeuvre this terrible disease.
Wendy is an Alzheimer’s Society ambassador and will be taking part in the charity’s flagship fundraising event, Memory Walk, this autumn. Sign up to your nearest walk and start fundraising at www.memorywalk.org.uk Wendy’s blog can be found at www.whichmeamitoday.wordpress.com
