Susie Hewer, Extreme Knitter
Susie Hewer holds the Guinness World record for extreme knitting, and fundraises for Alzheimers after seeing how it affected her mother.
Hannah - Hello. I'm Hannah Critchlow and you're listening to Naked Neuroscience. This month, we’re reporting from the Alzheimer's Research UK 2014 Conference in Oxford.
Alzheimer's is a progressive neurodegenerative disorder that’s part of a cluster of diseases called dementia. Those affected suffer from memory loss, confusion, mood changes, and difficulty with day to day tasks.
It’s estimated that 1 in 3 people in the UK over the age of 65 will die with dementia, and 2/3 of these will have Alzheimer's specifically.
Alzheimer's is caused when two abnormal proteins accumulate in the brain called amyloid and tau. They form clumps called plaques and tangles that interfere with how the brain cells work. The plaques often appear first in the area of the brain that makes new memories.
To find out more about how these plaques and tangles in the brain, affect people day to day, I firstly met Susie Hewer who features in the Guinness World Book of records for her extreme knitting. She’s constructed over 26 miles of scarfs while simultaneously running the London marathon. Why did she do this? Well, to raise awareness and fun for Alzheimer's Research UK. She’s prompted to do this after seeing first-hand how it affected her mother’s life as she explains…
Susie - She started to get quite depressed. She was very withdrawn and then the next phase was, she started to have wandering incidents. Because she lived with us and my husband worked at home, it hadn’t been really a problem until then but one day, he came downstairs, he found her sitting outside in the steps because she didn’t know where she was. She said, “Well, I couldn’t get in.” He said, “Well, why didn’t you ring the doorbell?” And she hadn’t thought about that.
The next thing that sort of changed our lives dramatically was, I left her in the library while she chose a book. I went over the road to the cashpoint and came back again. 5 minutes later, she wasn’t there. So, I looked up and down the road, couldn’t see her, went running one way and thankfully, I found her walking really fast with her head down. I said, “Mom, what's going on?” She said, “Well, you moved the car. I didn’t know where you were, so I'm heading for home.” She was heading completely in the wrong direction and the car was actually outside. So, at that point, we realised that the wandering could become a problem so I left my job to care for her full time. For a while, it was sort of alright because we could go out together and we both shared a love of nature and we go out together. She still help me around the house. She’d cook food sometimes although little by little, these things disappeared from her. She stopped being able to boil the kettle. She didn’t know where the kettle was. And then we started to enter the really unpleasant phase. She’d walk into a room and she wouldn’t sit somewhere because there was a woman there. She also had children hiding in her wardrobe stealing her clothes. She didn’t sleep at night at all. She slept for about 30 minutes and then she’d get up. I’d hear her moving around and I’d get up and put her back to bed again. Then she became doubly incontinent and it’s so humiliating for the person. But thankfully, by that stage, she was sort of beyond knowing what was going on.
Hannah - So, how long did it take for the doctors to finally realise that it was Alzheimer's and then start getting some kind of treatment for it?
Susie - It was about 7 years before she had a proper diagnosis. We were sent to the specialist and he took one look and he used all the questions like, what day of the week it is, who’s the prime minister, which floor we were, and she got every single one of them wrong. What I found really interesting from that was that she introduced me as her cousin and she started calling my husband Mark, by that time, his name was Mike.
Hannah - And you're very active now, with both your running and also your work with Alzheimer's Research UK. Can you tell us a little bit about that?
Susie - When mum went into nursing home, we decided to find out more about Alzheimer's and I discovered Alzheimer's was vastly underfunded. I got in touch with Alzheimer's Research UK and I decided I would run a marathon to try and raise money for them. It sort of spiralled on from there and here I am 9 years later and 31 marathons under my belt, and a couple of Guinness World Records and I'm still talking about it. People ask me why am I still doing it. It’s because although we talk about a little bit more, there's still this awful stigma attached to it. It’s an old person with a mental illness wherein rather the way we did about cancer, we’d refer to as a big C 30 years ago.
What I’d really like is that people will speak openly about it and not be ashamed of it. And the other thing, it’s still vastly underfunded. Even though the fund is made, measures to ensure that more funding is coming in, we still need more, and so, I still have to keep running.
Hannah - Thanks to Susie Hewer and you can find out about her next extreme knitting run by checking out the website, extremeknittingredhead.blogspot.com.