Sandra Grant – A Patient’s Story
In 2009, Sandra was admitted to St James’s Hospital through the emergency department, suffering from multiple seizures. She was in a critical condition due to extreme and persistent seizures. Sandra had never experienced such seizures before and for Sandra and her family this was a most unexpected and frightening time.
Sandra was placed in the care of the Neurology team, led by Dr Colin Doherty. He describes her case:
‘On the surface Sandra had a straightforward case of focal epilepsy responsive to treatment, then one day it all blew up. The seizures began again slowly at first then more persistently and intractably. Nothing worked to stop them. And after weeks of deteriorating seizures in the ward, we elected to put her into an induced coma in the ICU. That fateful decision brought her to the brink of death on several occasions; finally after 2 months on the ICU I decided to push for emergency surgery in Beaumont. This is done rarely maybe one per year or less’
Sandra underwent very successful surgery at Beaumont Hospital. The operation was completed within two hours, and within three hours she was awake but unable to speak. Dr Doherty explains the concerns ‘We thought – we may have stopped the seizures, but will she be able to speak again, so was it worth it? Is that what she would have wanted? A few days went by and she began to speak. We breathed finally. Within weeks she was back to herself and on a programme of rehabilitation for speech and movement’.
She returned to St James’s where she spent five months in ongoing treatment and rehabilitation. Due to the nature of her illness, Sandra does not remember much about her lengthy stay in hospital, especially in those early months, but her parents and siblings were there for her, alongside the medical team. During those critical first weeks, as a solution was sought to her condition, her parents were dependant on the advice of the team questioning and understanding what actions needed to be taken.
Part of Sandra’s ongoing treatment at St James’s included significant physiotherapy as Sandra had to re-learn how to walk and take on normal daily tasks which required considerable physical effort. ‘Trying to move even a small distance around the bed required great physical and mental energy. It was very exhausting. It is very important to understand the intensity of the care and treatment required after major surgery in order to re-start your life, the therapy is so important.’
Sandra worked with the speech therapist at St James’s Hospital as had to re-develop her speech and memory skills. Some of Sandra’s clearest memories of her time in hospital are of the nurses.
After Sandra was discharged from hospital she had to attend Out Patients’ Care, initially three times per week. Her parents were the backbone in getting her to and from appointments. A year later Sandra went back to work part-time where her employer supported her and where she now works full-time and lives independently.
‘The nurses on the ward went out of their way to care for me and always made time to see how I was and encourage me. One of them sat and brushed my hair for me. I was told a doctor came into the hospital from his time off as he wanted to get blood tests done and check on progress himself. That was the level of personal treatment and care given to me that I won’t forget’.
In 2010 she participated in the Women’s Mini-Marathon. This year she completed the annual Dublin to Galway cycle for Console for the second time.
Dr Colin Doherty reflects:
‘Most clinicians whether in training or practice or will remember signature cases in their lives which stretched then intellectually, physically and emotionally. This was my case. It’s hard to overstate the bravery and resilience of Sandra in the face of relentless seizures. Then once the seizures were dealt with, Sandra went through months of rehabilitation. Sandra’s family were dragged through the ringer with Sandra and the medical team too! Today Sandra is modest about what she went through. But while she remembers little I have no doubt that her spirit brought her through!’
Sandra wants to see more investment in our Brain Disease services at St James’s hospital and is supporting our appeal for the John Kirker Brain Disease Centre.
Katie Cooke – A Patient’s Story
Katie is 18 years old. 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.
‘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!’