He’s best known as a TV newsreader – the presenter who announced the death of Princess Diana in 1997. Yet while he calmly read the national evening news to millions of viewers, Sir Martyn Lewis was also caring for his wife Liz who had been diagnosed with Huntingdon’s Disease.
Here Martyn, who received a knighthood for his charity work in 2016, explains how he and his family learnt to cope with Huntingdon’s and dementia
I knew when Liz and I married in 1970 there was a slight chance she may have inherited Huntingdon’s from her mother. But nothing was certain – the diagnosis was nowhere near as accurate as it is now. Besides, we were in love and it was a risk worth taking.
After 25 years of marriage and two children, Liz started tripping over things and behaving in a slightly strange way. By then, a new blood test for Huntingdon’s had been developed so Liz got tested… and discovered she did have the condition.
Huntingdon’s is a horrifying genetic condition. It causes the slow loss of brain cells and symptoms including dementia. A brain scan revealed that Liz already had the brain of an 80-year-old – she was only 50.
Perhaps worst of all, there was also a 50 per cent chance that our daughters Katie and Sylvie would inherit Huntingdon’s too. It was quite shattering.
I’ve always tried to have a positive attitude to life and in the early days at least we were determined that life would go on. Liz still went out for walks on her own and our youngest daughter Katie was quite a phenomenal help. (Sylvie was already living in the US and came home as often as she could). Katie was only 18 and gave up a promising career in the film industry to look after her mum. We were also lucky enough to have an incredible Admiral Nurse who was there not just for Liz, but for all of us. Her help, support and complete understanding was transformational.
But Huntingdon’s is an extraordinarily awful condition – a triple combination of Alzheimer’s, Motor Neurones and Parkinson’s all rolled into one. You lose your ability to speak, to balance and you eventually lose your mind. It also tends to exacerbate some of the characteristic the person might have had before diagnosis. Fortunately for us, Liz was a very gentle, loving person so it accentuated these qualities in her – she was always saying sorry and apologising for the tiniest things she didn’t need to apologise for.
I meanwhile continued working flat-out, my job as a newsreader was definitely an important distraction. I was able to move in a world where I had to concentrate on other things… I also got used to doing all the shopping and cooking – thank goodness for Marks & Spencer!
As a report and journalist, you develop an emotional cocoon to protect you from all the potentially upsetting things you encounter, but when it’s personal there’s no cocoon. It’s difficult.
At first, I only discussed what was happening at home with a few very, very close friends. I know many people find catharsis in writing and talking about their emotions, but my daughters felt we could deal with it better if it remained private. I respected their view.
Thanks to Katie’s amazing love and devotion, we were able to keep Liz at home for far longer than anyone expected. In fact, when we did finally agree to her going into a nursing home, the doctor told us she’d lived at home for two years longer than he’d normally recommend – which was a huge tick in the box for Katie.
Eventually we found a good nursing home in a wonderful setting. Katie visited every day. Liz was only expected to live another two or three years but incredibly she survived for another 11 years – probably because she was being so well cared for. Liz died in 2012 at the age of 66. We’d been married for more than 30 years.
It’s only now, six years after her death, that I feel able to talk about the experience.
Of course, my biggest fear was that one or both of our daughters might also inherit Huntingdon’s. Sylvie and Katie are great mates and at first, neither of them wanted to get tested in case they discovered one of them had it and the other didn’t…But after several years of agonizing and a fair amount of genetic counselling, they decided to find out.
I can’t tell you what a relief it was when they showed me their results – they were both clear. But I’m also conscious that for many families, the diagnosis is different and that we are therefore very, very fortunate.
As for me, time really is a great healer. When Liz was very poorly my daughters both said to me, “Dad, we think you should get yourself a life.” Not long after, I was lucky enough to meet an amazing lady, Patsy Baker, just at a time when I thought that side of my life was over. She’s been at my side ever since.
I firmly believe that life is for today. While the past is important – and you may have some great memories – you have to try to move on. I do have occasional down days when I start to feel negative but generally, I’ve always been driven by a great enthusiasm for life. I still consider myself a very lucky man.
Your Big Day
Martyn recently launched Your Big Day a unique way to celebrate special occasions and birthdays. Your Big Day creates short personalised videos, including historical footage, of significant events that occurred on your big day, all narrated by Martyn himself. The video films cost £19.95: enter charity code UFF at checkout and a donation of £4 will be made to the Unforgettable Foundation for each film purchased.