Katie Cooke – A Patient’s Story
Katie is a young student. Ten years ago she was diagnosed with epilepsy, which subsequently developed into one of the most aggressive forms of epilepsy. She was hospitalised in August 2012 at Crumlin Hospital, experiencing increasing issues with anti-epileptic medications and was there for over 8 months. During this time, Katie underwent seven different drug trials in quick succession, all with debilitating side effects and culminating in her spending six months in a wheelchair. At that point Katie’s Mam, Nicola, left her job to care for Katie.
Today Katie is under the adult care of St James’s Hospital, with Dr Colin Doherty. She experiences over 60 breakthrough seizures each week and the team is currently exploring surgical options with her.
Due to the limited space for neurology services, Katie and her Mam often find themselves in a cramped portacabin when they meet with Dr Doherty and his team. Nicola, Katie’s Mam says ‘Sometimes up to six or seven people, all key in Katie’s plan, standing and crouching to squeeze into space. Even a standard neurology exam is extremely hard for the team to carry out in these conditions, such as checking Katie’s mobility’
Katie and Nicola have great praise for the team and their work.
‘The support the neurology team provides to our family is indescribable. They are our life line and work so hard to help Katie in every way they can’. Nicola Cooke
Katie has some mobility issues but in June 2015 she ran the Women’s Mini-Marathon and fundraised on behalf of Brain Disease at St James’s Hospital. Although she experienced seizures during this race, she was able to manage her seizures and kept on running.
She then went on to run the SSE Airtricity Dublin Marathon in 2015 and in 2016, ran in many races including the Dublin Marathon yet again.
‘I’ve always felt really listened to about what my seizures and illness are like by Dr Doherty and his team. I don’t mind going to James’s at all because I know that everyone there tries to understand what it is like to be me. It would be better if we had more space for my visits’ explains Katie.
Katie’s Mam, Nicola says
‘the most remarkable thing about our story is Katie herself. She constantly strives to maintain her friendships, and boy does she have a lot of friends. She rarely moans and she is an inspiration to nearly everyone she comes into contact with. Of course there are challenges and lots of days spent in bed, but for the most part, Katie embraces life to the max and doesn’t give up!’
No Time to Lose- RTE Radio 1 Documentary
No Time To Lose
Courtesy of RTE Radio 1
Katie is more than her illness and running is more than an exercise for Katie. Two years ago Katie left hospital aged 17 in a fragile condition and confined to a wheelchair. Since that time she has made an incredible recovery one that she owes in large part to her running, in short, running has transformed Katie’s life. Despite long-term stays in hospital and frequent seizures, she is determined to live as normal a life as possible.
In July of 2015, supported by her neurologist from St. James hospital, Katie ran a mini-marathon and finished in 54 minutes. During the race she had three seizures. She woke up to crowds around her telling her to ‘take it easy’ but she explained that she just had to get up and keep going. Running and training have become a way for her to gain control over her a body, a body that frequently controls her.
We follow Katie over three months as she prepares for the Dublin City Half Marathon held on September 24th in the Phoenix Park. As well as preparing for this race Katie has had an otherwise busy summer. Sitting the leaving cert, the post leaving cert holiday with friends and her debs have all been squeezed into her busy schedule.
Katie’s Story – Fingal 10K 2015, Written by Nicola Cooke.
It’s just gone 10am on Sunday 17th July and I’m on Swords Main Street at the spectators’ side of the starting line for The Fingal 10k race. The sun beats down and before long the claxton bleats it’s starting horn and I realise that my emotions are entwined with the runner’s sea of colours, now picking up speed and being carried away. My daughter, Katie, complete with her red warrior paint stripes on her cheeks and blue emblazoned ‘Brain Disease for St James’ Hospital’ t-shirt is over the line and away. She appears just like any other teenager jogging a race, but life is oftentimes far from normal for her. Last night she experienced ten seizures and this morning I watched as my very brave girl took up her starting position with everyone else, her strong and determined spirit very much alive in her eyes.
Katie has a tricky type of epilepsy and it has been difficult for doctors to control her frequent seizures. She experiences seizures every day and night, usually more than ten in a 24 hour period. She can suddenly lose consciousness, fall over anywhere and her body will usual begin to convulse. Our family is very used to Katie and her frequent seizures and to us this is ‘normal life’. It is a true that you can get used to almost anything and we are very much a family that embraces ‘getting on with it’. Katie, now 18, has experienced a rocky time since adolescence.
She spent almost eight months in Crumlin Children’s’ Hospital as a long term in-patient a few years ago and ongoing seizure issues continue to have a big impact on her health and teenage life. Today, under the amazing care of the neurology team at St James’ Hospital, Katie has some potential surgical options being explored with her. For Katie, maintaining areas of focus which are of benefit to her body, mind and spirit are important. Like no other type of therapy she has tried before, her running, training and participating in races over the last year have played such a huge part in a good state of mind and much improved day to day physical functioning. Don’t get me wrong, it can be hard. There are a lot of really, really tough and very sick days. On the very rare occasion when she simply says ‘it’s not fair’, I really do choke up. Because it’s true, it’s simply not fair.
So when Katie finished the mini marathon in June in fifty four minutes despite having three separate seizures en route, the feeling of pride was overwhelming. And because she wanted to be involved in the SSE Airtricity Dublin Race Series for the proposed new Dr John Kirker Brain Disease Centre at St James’ Hospital, the SSE Airtricity team and St. James Hospital both offered her amazing support.
As I’m scribbling notes for this article, now down by the finish line in Swords, my phone rings and it’s the news I was hoping not to receive. Katie has fallen, just 2 kms into the race and she is convulsing for longer than her usual brief seizures. Of course, safety first is the rule in these situations, but I can’t help but feel the disappointment that I know my daughter will be feeling when her seizure resolves. Passing runners have come to her aid by the roadside and although they are nameless to me, I am always so grateful for the compassion and kindness of strangers. Katie arrives back to the first aid tent by ambulance and thankfully, she does not require any emergency medical treatment. She is visibly upset and crying and pleads with me to let her finish the race. This is not an option but this is a girl who wants to pick herself up immediately and get on with living. It’s one of those ‘it’s not fair’ moments and a setback for her esteem. But I know my girl and I know that she’s going to pick herself up again and try another day.
In regards to the brain disease fundraising appeal for St James’ Hospital, this is a centre that is needed so very badly in our capital city now. It is so hard to believe that with 30,000 people suffering with a form of chronic brain disease in the community serviced by St James’s Hospital, 1800 admissions with acute neurological problems each year, and more patients from outside the hospital’s catchment area – all being currently treated at St James’ Hospital – that space is so cramped that families are congregated in portacabin type structures.
Brain disease is so often not highlighted in the media and yet it is something that will probably impact most of us either directly or indirectly in the future. This includes epilepsy, but also MS, Alzheimer’s and Parkinson disease, to name a few known diseases. The neurology team at St James’ Hospital has a great track record of reducing waiting lists within the services in Ireland despite currently operating out of the smaller service units in the country.
Please help this amazing service. You can help in so many ways from getting involved in the SSE Airtricity Dublin Race Series, to holding your own fundraising event, or by making a kind donation. SSE Airtricity are kindly partnering with St James’s Hospital to also raise funds for Brain Disease.
For further information contact Clodagh Memery at email@example.com / ph: 01 410 3986/410 3936
Gone with the wind – Katie Runs the VHI Women’s Mini Marathon
In many ways, I’m like any other teenager. I use social media, go to teen events and giggle endlessly on the phone with friends. On the surface you would think me no different to see me as part of a group. But I have a severe form of epilepsy which gets in the way of normal living and presents daily challenges. You see, I fall over a lot and I mean A LOT!! I have had more than 5,000 seizures since my diagnosis and sometimes there are too many to keep track of.
Currently I’m experiencing around 8 to 10 seizures every 24 hours. Many come at night, giving me a hugely interrupted sleep pattern. Of the four or five seizures I experience during the day, I could be doing anything that most people don’t think twice about; crossing a road, going for a jog, going down an escalator. And I usually get no warning at all. I have spent nearly a year in hospital at a time in my life when my friends were having fun without me. There have been a lot of health issues to put up with, I can go blind, weak to the point of paralysis, have many types of seizures and spend a lot more time lying down than most . But I have made it clear to my family that I do not want to be wrapped in cotton wool and live a sheltered and fearful life. I have dreams like every other teen and I won’t let epilepsy define who I am. Sometimes that’s hard. Having all these seizures makes me particularly tired in the mornings and the medication can make me sick sometimes. When I do manage to make it to school, I have an assistant with me at all times because of the large number of seizures and the implication it has, not just on me, but those around me.
So you can imagine the reaction of people when I said I wanted to run the mini marathon! Really?! What about the risks? The inevitable falls? But I know I have a determined spirit that can conquer almost anything and with my family, neurology team at St James’ Hospital and local gym all supporting me, I knew I could at least give it my best. Now I can’t stress enough that unless I had the personal support and calm reactions of the staff at Ben Dunne Gym, Cherrywood, to my daily seizures, I’m not sure I would have been able to get my training started. When I come around from a seizure to hear that calm voice saying ‘it’s ok, Katie’s alright’, it’s the best reaction for me. I can’t thank my gym enough. They have given me a semblance of normality in a world gone a bit mad with stringent health and safety rules. I can be me there and know that if I communicate that ‘I’m ok’ after a seizure, they will listen to me. So I trained hard and after every seizure, I got up and trained more. I was determined to do this marathon and to finish it in under an hour! A tall ask perhaps, but that’s where my push to achieve comes in.
On the day of the mini marathon, mum and I made our way into town. We were soaked to the skin before we got to my starting position and I was beginning to have big nerves when I saw the seas of people. Could I do this? I wasn’t given time to think much as the start was on. My mum walked near me to the start line and I could see the glint of a tear in her eyes as we made eye contact for the last time. I was off! I suppose I go inside myself when I run. I feel a sense of freedom that is difficult to achieve in my life a lot. The wind in my face and the crowds around me propelled me on. I don’t know how I fell the first or second time, but I do know that when I came around, there was a big crowd around me telling me to ‘take it easy’. Now, I’m not recommending this to anyone who has a seizure, but I know my body and I also know the fear of others in these circumstances.
If I didn’t manage to get going again, I wouldn’t achieve what I had set out to do. So, I took off, probably leaving those behind me a bit flummoxed! I’m sorry, I had to. Sometimes the explaining is the difficult bit. With the finish line nearly 4kms away, I was so completely exhausted. I think it was around this point that I fell again and once more I managed to shake off the concerned passer bys. Adrenaline kicked in and the rest is a blur. Then my mum was gathering me in her arms and I needed to sit down on the road.
My name is Katie Cooke and I’m proud to stand for those who are different. Did I finish it? Of course I did! My finishing time was 54 minutes and 28 seconds on behalf of St James’ Hospital Neurology fund.