My name was called, and I went into the appointment room on my own.
Myself and the two genetic councillors sat down. I was asked if I had any questions. I said no. I was asked if I wished to be told the result of my test, I said yes. And that’s why I’m writing this blog today.
It all started with my dad.
He was the most doting and loving Dad you could ask for. He was a big kid, avid train spotter and huge Norwich City fan. He was a doctor - so many people comment on how he had the most beautiful and caring bedside manner. My parents divorced when I was young so I’d spend the weekends with my dad. It was always fun and happy, he’d play Queen in the mornings and prepare breakfasts of pitta bread, frankfurters and cheese (he was an awful cook).
It was in my early 20s while I was away at university that things started to change. He wouldn’t call me so much as he used too, or when he did, he just seemed a little odd. I couldn’t put my finger on it.
I returned home for my 21st birthday and arranged to meet my dad but he didn’t show up.
Things continued to escalate from there. A couple of months later I went to my dad’s and when he answered the door he was really distressed. He told me there was a lady in his apartment trying to make him have a bath. I kindly suggested she left and made my dad a cup of tea. He was wearing a strange assortment of clothes and his flat was a mess. It transpired that dad had lost his job and the lady was hired by my family to help care for him.
After this I decided to move home and look after him. It soon became a full-time job and by the age of 22 I had to give up work to look after him 24/7. Inevitably it became unsustainable for us both. A crisis meeting was called; I had to admit I couldn’t continue to care for him. It was one of the hardest things to say as I didn’t want him to go into care. I felt like I was giving up on my child.
Dad was moved to a psychiatric ward as at the time he was deemed too young at 55 to be on a dementia ward. I ended up spending most of my days on the ward with him.
He continued to deteriorate and sadly passed away at the age of 60, just 14 months after my mum died unexpectedly at the age of 59.
I wanted to go away on my own, be anonymous, be 26. I moved to Melbourne, Australia and after a while I started thinking a lot about my family’s medical history. I’m sure I’d been told Dad’s dementia was rare and genetic and there was a one in two chance I could inherit that gene from him and be faced with the same fate.
I wanted to find out if this was true.
After some extensive research I found the right people to talk with and it was confirmed that if I inherited the gene from my father I would get early-onset dementia; no ifs, buts or grey areas.
I decided not to have the test at that time but was asked to take part in a drug trial to find a cure for dementia. I said yes. I wanted to do something positive in light of such a dark situation.
I have been part of the research trial for four years. I have an intravenous drug infusion every three to four weeks, I have various scans, MRIs, lumbar punctures and memory tests. I’m part of a small group of people working towards a huge medical breakthrough.
Three years into the study I started to realise the not knowing my genetic status was starting to impact my life. I thought about it. All.The.Time. So I decided to get tested.
The process involved six months of genetic counselling. It aims to prepare you to deal with information that would in one way or another change your life. It highlighted the importance of understanding the irreversible nature of the outcome. Once you know you can never ‘unknow’.
Waiting was sometimes torture and sometimes serenely calm.
I received my results on 26 August 2017. That morning I felt amazingly calm, a stark contrast to the day before when I was hysterical.
My friend Morgan came with me to the hospital. I started feeling insane levels of anxiety. Everything around me was a blur and white noise.
I remember seeing one of the councillors I had been working with for the past six months through a glass door. She would be delivering me the result. We met eyes and she smiled. For the first time in the whole process and potentially my whole life I thought ‘I’m ok!’, ‘I don’t have it, she smiled!’.
My name was called, and I went into the appointment room on my own.
Myself and the two councillors sat down. I was asked if I had any questions. I said no. I was asked if I wished to be told the result of my test, I said yes.
I was told, ‘Laura unfortunately you were tested positive to carrying the gene’.
I didn’t burst into tears, I just said ‘ok’. Maybe I was in shock, I don’t know. I felt a little in disbelief even though I’d always felt like I weirdly knew. They then left the room and I was alone.
I thought about the lady smiling, what else was she going to do on meeting my eye? Make a sad face?
I then thought of the people I had to tell, and that’s when my heart broke. I had arranged a plan to text my close family and friends then follow with a call at some point later that day. I thought of them receiving it and how sad they would be, it was truly horrible. Morgan came through and I told her. She cried, which made me cry. I just wanted to get out of the hospital.
So, we left, went to our favourite restaurant and ordered champagne at 11.45am. We laughed and cried through lunch, the staff thought we were bonkers. I then got home and into bed with my cat, a very heavy heart and an afternoon hangover.
Initially I didn’t feel sad about the fact I would get ill or die young but more so about the things I now know I won’t do. Like have a family.
I’ve never really known what I wanted to do in life, but I’ve always thought I’d be a great mum and just took for granted that one day that’s what I would do, and in some way, it would complete me.
Life felt weird and numb, at first I thought ‘what’s the point’. I felt like I had no purpose, like I had nothing to work towards, I would have no retirement, no family to bring up and care for, it was really tough and immensely lonely.
On receiving my results I decided to move back to the UK. It felt crazy to choose to live on the other side of the world from the family I do have and my old friends when I have limited time to play with. Plus, I needed more support.
For almost a year I just existed here. I needed a focus, a challenge, something to keep me on track and accountable for myself. So on one of many sleepless nights I entered the ballot for the London Marathon. Despite the fact I really don’t like running.
When I heard Dementia Revolution was the Charity of the Year it all made sense, like the universe had aligned.
I decided that I refuse to live in shame or embarrassment about my situation, which is how I felt. People don’t talk about dementia. If I was diagnosed with cancer I would have told people straight away, but with dementia it’s different and it shouldn’t be.
So when I got a place I decided to use the marathon as a platform to speak out about my diagnosis, to show people it’s not just an older person illness. It’s a cause that needs more support, more funding and more awareness to help future generations.
I can now say that the marathon is saving me. I wouldn’t say I’m overly enjoying the training process, but it is giving me purpose and reason.
People’s support through donations and messages are carrying me. I feel less alone and empowered.