Walking beyond the shadow of dementia

Tracey Shorthouse tells Sue Mott how she is dealing with the early onset of Alzheimer’s disease in her forties. Her plan to walk at least part of the South Coast Challenge this summer fits in perfectly with The Mixed Zone’s She Who Dares campaign to get women to do something outside their comfort zone

It’s like having an alien riding in my brain
At times, it takes control
And I feel a lot of strain
As my memories unroll

From a collection of Poems I Am Still Me by Tracey Shorthouse

Tracey Shorthouse fell over thirty times in 2014. Thirty-ish. It was pretty easy to lose count. So she is treading carefully, prodding the earth here and there with her stick, as she walks through the Kentish parkland as the Dover Channel glistens through the trees. She pauses to take in the blossom and birdsong and a deliriously disobedient dog splashing in a stream to the loud exasperation of its distant owner. “It’s lovely just to stop and look around you, isn’t it?” she says. “Brings you peace. I never used to when I was a nurse. Always rushing, in a hurry, no time to stop and just look.”

Nearly three years ago she had put those falls down as random accidents, due to the whirlwind of working and social life. But then she began forgetting small but significant parts of her medical training. Alarmed, she did exactly what she always told her patients not to do and checked them on Google. “Slurred speech, wobbly on my legs, falling over, perception problems.” She self-diagnosed MS. She was in hospital for a week to have MRI and CT scans. “I went to my GP once I as out of hospital to be told there was nothing wrong and stop wasting his time.”

Initially relieved she became more and more convinced that something was amiss. The symptoms persisted, but given the battery of tests that had indicated no problem the medical profession was sceptical. Frustrated in her attempts for more than a year she eventually made an appointment with a locum doctor, who by great coincidence was someone she already knew in the health service. Attempting to walk into his surgery, she collided with the doorframe. “All right, Tracey,” he said. “I get there’s something wrong.”

This time the diagnostic tests included two memory tests, a Spect scan, a type of nuclear imaging test, and a lumbar puncture. The results were no longer all clear. She was diagnosed with early onset Alzheimer’s disease and a variant of posterior cortical atrophy, another form of dementia. She was 45. It was Christmas 2015.

“Both conditions affect my memory. I have difficulty with words, numbers, spatial awareness, depth perception. I can’t drive because of PCA. In the early days before my diagnosis, I was parking – but in the middle of the road. And I’d lose things. I’d know there was a cup on the table, but when I went to pick it up it was gone. It was like a hallucination backwards. It wasn’t really gone, but my brain had hidden it and I couldn’t see where it was anymore. When that happens I have to go away and do something different and then it’s back again.

“Once, in my car, I nearly hit someone at dusk on a zebra crossing. My friend was with me screaming blue murder. It was quite awful. I’d never had an accident in my whole life. I hated it. Eventually, even though I was on medication – Aricept, which made a huge difference – and could go for a driving assessment, I decided, ‘Actually, I don’t want to drive anymore. It’s too scary’.”

But the initial shock wore off quickly. She swiftly jettisoned feeling scared for more positive emotions, like willful, happy, ambitious and bloody determined not to succumb to atrophy herself. She lives in her own home with her two cats, complete with alarms to nudge her to drink every hour, and a checklist on the door reminding her to lock up and take her keys. Her occupational therapist now visits once a month, cut down from weekly sessions.

“She’s my Godsend. In the early days she was someone I could really talk to. I couldn’t really talk to my family and friends, but she used to come and let me cry. She said it was like a bereavement process. I have lost a part of me, no matter how much I say I haven’t. I’ve lost a little bit of me because some of my memories have gone. There’s a whole two years I can’t remember at all. And I can’t go out so much, especially to busy pubs in the evenings. The noise is like busy bees in my head. So I go out with friends somewhere quiet instead or we have a picnic. My friends and family adapt to me, which is nice.

“Being quite a strong person, I don’t cry very often. It is cathartic when I do. Writing poetry is cathartic, too. I wrote about how I was feeling. One poem called Acceptance is asking for people to accept me how I am. I am not dementia. I’m Tracey still. That why I called the collection in my book I Am Still Me.

“The other poems in there aren’t about dementia at all. I don’t want to go on about it. It’s not going to define me. I write about nature, trees, my garden, love, the precious things in life that when you work all the hours God sends you don’t see. You don’t stop long enough to look.

“Now I think that dementia is the best thing that ever happened to me.” She pauses to let that statement sink in. Everyone challenges her on it. It can’t be true, surely. “Yeah, I do,” she says patiently. “I do so much more with my life now. I talk to people who have been recently diagnosed with dementia and tell them not to give up. You can live well with dementia. You can. You just have to believe it in your heart.

“I wouldn’t have wished it on myself, but I have got it. I can’t change it and so I look beyond it and enjoy everything I do. Yes, I do get tired very quickly and I might have days when I can’t walk or talk. I just sit and do nothing to recover. But if an opportunity arises I grasp it with both hands even if it exhausts me. I’d rather do too much than do nothing at all. People give up far too easily. You just have to adapt, get on with life and keep a sense of humour.

“I know – because I’ve nursed people in the last stages of dementia – what is going to happen to me in the long run, but I’ve said to my consultant, ‘I want to have at least 20 to 30 years ahead of me before I’m batty as a fruitcake’. He laughed and said, ‘Well, actually, with your positivity I can imagine you doing that’. So every day I wake up and think, ‘Today is not the day’.”

Crucially, she loves walking. For the exercise, the pleasure she takes in being outdoors and – Tracey very much remaining Tracey – as a training session for a massive ambition she holds for this summer. Last year, in August, she – with no companion – attempted a 46-kilometre walk along the South Downs as part of a Bank Holiday walking event. The journey had been stressful since changing trains can be baffling. Finding her accommodation was difficult. Her sleep was disrupted. She began the event feeling exhausted and then forgot to hydrate herself properly. Even so, she completed, through sheer stubbornness, 26 kilometres in nine hours.

This year she plans to go back with a more realistic goal. She will walk the first quarter of the South Coast Challenge, approximately 23 kilometres from Eastbourne to Alfriston, on the August Bank Holiday weekend. This time, ideally, she will get less lost on the train network, less tired through stress and remember to drink water along the way. It may be that a companion or two would help spur her along, so if anyone is around the South Downs area at the time and would like to become – for however short a distance – part of Team Tracey, let us know at The Mixed Zone.

Sometimes, not often, she looks back at photos. “I think I can’t remember going to a dance, but clearly I did because I’m in a ball gown. But there’s no point dwelling on it. The memory’s gone, so why keep on about it. And the future hasn’t happened yet, so what’s the point of worrying about it.” As philosophies go, it’s pretty flawless.

ABOUT THE AUTHOR

Sue Mott is an award-winning sport journalist who has worked on radio, TV and the written press. Sue’s latest articles

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3 thoughts on “Walking beyond the shadow of dementia

  • 18th April 2017 at 2:59 am
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    I know your pain I was falling often brain was buffering and I couldn’t remember what I did the day before. It took a while to get a diagnosis so now I have Lewy body dementia. It difficult to articulate that to others but I try and now I go for long walks with my dog he is my companion. Good luck to you in the future. I’ve also noticed a personality change as I would never communicate on these types of forums. Good luck and god bless

    Reply
    • 18th April 2017 at 12:05 pm
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      Hi Thomas,
      I wish I could have a dog but unfortunately I am never at home long enough. But I have my two cats for company. I never thought I would have written a book or go out and give talks, but I think I have nothing to lose now. Thank you for your kind thoughts and good luck to you as well.

      Reply
  • 18th April 2017 at 2:48 pm
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    Thanks for sharing your story Tracey …. Keep those positive thoughts top of mind and keep going!!! 🙂 I am 49 and was diagnosed with Early Onset Alzheimers a couple of years back.

    Reply

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