Tom: Alzheimer’s disease has been a part of our lives for so long and we’ve always struggled to deal with it.
My nan was diagnosed in her late 40s, and as a child this made me confused and sad. As time went on I found visiting my nan in the care home very tough. Alzheimer’s was taking my nan away from me.
My mum then tested positive for the mutation in the APP gene, which is hereditary in our family, and shortly afterwards she was diagnosed with Alzheimer’s at the age of 49. She’s now living in a nursing home relying on care 24/7 at the age of 54.
Jack: Mum was a superwoman. She tried to protect us. When she was diagnosed, she would say ‘I’m fine you’ve got nothing to worry about’, but deep down she knew what was going to happen.
It’s been shocking how rapid her decline has been. It’s like one minute you’re going around your mum’s house for a nice cup of tea and a chat and then you blink and she’s in a nursing home.
When you visit her you have to accept that the visit is not going to go how you want it to go. A lot of the time you are asking her questions and then having to answer them yourself. But now and again she can be like her old self, with little jokes or just her mannerisms that let you know the old mum is still there.
Tom: Due to Mum having this gene we also have a 50 per cent chance of inheriting it too, which also means our children could then have it.
I like to try to stay positive, but when I visit Mum in the nursing home I do have the fear that one day my children will be doing the same for me.
Jack: For me, I was a bit oblivious to it at first. You think you’re invincible and it’s not going to happen to you. But now I have children I think about it more and thinking about the possibility that I might have the gene and my children could have it terrifies me.
When I think about it, there’s a little bit of anger. You just have the big question of why. Why my family? Why my mum, why my nan? It’s hard to process as it feels so unfair.
Tom: Although it has been very tough for Mum, when she was diagnosed she took part in research for a short time before it got too much for her and she had to stop. She did this as she wanted to help others, and it’s her passion that drives me forward today.
When I found out the Dementia Revolution was the official charity for the 2019 London Marathon I had to apply. I am delighted to be a part of the Dementia Revolution team. Together we are creating so much more awareness of dementia, tackling stigmas and raising money for research to find a prevention or ultimately a cure to help families like ours in the future.
I’ve never run a marathon before and I find the prospect of race day very daunting. I know training is going to be tough over the coming months, but I am looking forward to getting stuck in and tracking my progress. My main aim is to cross the finish line on Sunday 28 April with my family by my side.
Jack: I have more running experience than Tom as I’ve completed two marathons. But I won’t be aiming for a personal best time. This is about us all running together as a family for such a great cause. We all said from the get-go that we’re going to start the marathon together and finish together. This is a family affair for us.
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