How a research programme showed us how to shape up to Alzheimers

Who’d have thought that an Alzheimers diagnosis would mean a new beginning for Lena and me, the spur we needed to re-evaluate our priorities and get our lives back into shape?

Our meeting for Lena’s test results didn’t start positively. Yes, it was early-onset Alzheimers, as I’d suspected. And no, there wasn’t really an effective treatment: drugs could suppress the symptoms but not cure the illness.

But then our consultant went on to make a suggestion that, for both of us, has had a bigger impact than anything she could have prescribed.

The University of Warwick, she told us, had set up a nationwide research project to investigate the potential benefits of moderate physical activity for people living at home with dementia. DAPA, they called it – Dementia And Physical Activity. It would involve 2 sessions in a local gym each week, under the guidance of specially-trained instructors. Lena was relatively young, in pretty good shape physically – she’d be a perfect candidate.

We hesitated before volunteering. Lena wasn’t keen to sign up to an activity with ‘Alzheimers’ on the tin. Wouldn’t that just be even more depressing? And I had concerns about whether Lena would be able to follow directions well enough to get much out of a gym class. She’d already had a morale-sapping experience going to a couple of yoga classes with our kids a couple of months before – they told me that she struggled to keep up, the instructor couldn’t understand why, and they didn’t know how to explain.

Yet something told me we should give it a go. Was there anything to lose? Probably not … and if Lena really didn’t enjoy it, Warwick made it clear that she could just pull out, no questions asked. Was there anything to gain? Maybe.

Eventually, though Lena was still lukewarm, she agreed to add her name to the list.


Turning our lives around


8 months passed – and dementia was beginning to drag us down. As it does. Not so long ago, Lena travelled the world on her own, making friends everywhere. Now the front-door was her boundary, unless I went out with her. And in a new town, friends were just memories, especially now that the computer and the mobile had become alien devices. The question I feared the most was ‘So what’s the day got in store for us?’ Lots of days, I didn’t really have a good answer. I was used to thinking for one, not two.

Lena & Claire

Lena and gym instructor Claire Hinze – 3 months after the course at a research feedback day

But when the classes started, everything changed. Suddenly we had somewhere to go: the trip across town to the gym was a little adventure. There was a group of new people. OK, so they had dementia too, but that’s not what they talked about, because they were busy doing the exercises and having fun. Lena loved the instructors. They knew their role was to motivate and support, never be judgemental. And for a couple of hours a week, she got a break from me. No matter how close you are as a couple, you need space just to be yourself from time to time.

I made the most of the hours while Lena was busy. It was useful to share experiences with the other carers … but I had another plan too. Right next door to the room with Lena’s class was a fully-equipped gym, and, creeping towards obesity, I had 40 pounds of weight to lose. I took out a membership, sucked in my stomach, and tried to look like a professional as I fell off the back of the treadmill.

A few weeks later, and we were enjoying it all so much that we took out a gym membership for Lena too and started going 3 days a week. The alternate days I started running – for the first time in over 40 years. 100 yards was all I could manage at first, but now – well I have a couple of sub-25 minute 5Ks under my (smaller) belt. I’m taking on the Manchester 10K run in May and my first half-marathon in September. Life-long ambitions – and I’m in better shape than I have been since school.

Has DAPA had any medical benefits for Lena? I honestly can’t say. As each month goes by, I still see little signs that her memory is shortening, disorientation increasing. Would that have been any different without exercise? When we see the published DAPA results, in a year or so, perhaps we’ll understand better.

But you know what? Dementia is so much more than a medical condition. What starts with an illness can become a state of mind – a gloomy dark depressed place that just breeds more sickness. The ultimate vicious circle. We were close to that place, both Lena and I, before DAPA. But now? Well, now we know there’s an alternative, a lifestyle change that makes us feel better about ourselves, gives us fun today instead of fear for tomorrow. We’re both more … resilient.


A plan takes shape


 

February 2015, and Lena’s 4-month programme comes to an end. We still go to the gym, but somehow it’s not quite as enjoyable. I know Lena misses her instructors and the ambience – all she’s got now is me again … and of course I’m trying to do my thing. I’m going to be running to raise money for Alzheimers.

And then it suddenly hits me. If I’m running for Alzheimers, why can’t I be running for Lena? Why not try to sponsor a class just like DAPA? What would it need? A gym, a couple of instructors, insurance, maybe transport, a group of willing participants of course. How much would it cost? And wait, if it’s possible for 3 months, why not 6? Or a year? And if we could do it for ourselves in Manchester, why not for others in Birmingham, London … Los Angeles, Melbourne …? Dementia knows no borders, after all. Maybe we should take it further than gym sessions? Because there are plenty of other ways to stay fit, make friends and have fun. People must be offering these kinds of activities already – so how could we help people like us to find them?

And so Ctrl+Alz+Shift was born.

That’s why we’ll be forever grateful to our consultant, Dr Noble at the Salford Royal Hospital, and to Warwick University’s DAPA team for helping us to turn around our lives. And – who knows? – the lives of many others.

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