Northern Trust Charitable Funds

My story and why we want to fundraise for the Northern Trust Charitable Funds in the NHS…..

To raise these funds I saw an opportunity. My husband and his friends – Martyn, William, Tony and Paddy are each doing a relay in the Belfast Marathon on Sunday 5th May so I kindly asked if they could do it to raise money for the Northern Trust Charitable Funds, because of the support I have received from the Northern Trust Brain Injury Service (NTBIS) and here’s why….

On Friday 10th November 2023 our life as we knew it changed in a heartbeat. I was about to face the toughest day of my life so far. You always hear the saying “it’ll never happen to me”, but in this case it did. I was one of “them” people. I woke up with a lingering headache that I still considered was down to my one too many from the weekend before (I rarely go out) and got out of bed to get washed and dressed, only to notice my left leg wasn’t moving as normal. I can only describe it as “limited mobility” and I had never experienced this before.

After getting an emergency appointment with my GP we discovered I had reduced sensation in my leg and my reflexes in my foot were not reacting. This was a cause for concern and a trip to A&E. After some tests I was pulled aside and at approximately 5pm I was told news no-one wants to hear - Natasha we have found a mass on your brain and we don’t know if it is cancerous or benign. I sat in shock then burst into tears. I cried for less than 10 seconds, sat up straight, looked the doctor in the eyes and asked what happens next. My brain took on fight mode and I was ready to battle, especially with my husband holding my hand.

I was discharged from hospital with plans in place for more tests the following week but we weren’t in the house 5 minutes and Gordon had to ring 999. Something new was happening, I thought I couldn’t get any more scared but my leg started jerking uncontrollably and my toes and ankle twitching and it wouldn’t stop. The uncomfortable pain of my muscles contracting and relaxing repeatedly, we didn’t know what was happening. Then it stopped after a few minutes and I couldn’t feel or move my leg. It was like a dead weight. Gordon managed to get me onto the sofa while waiting on the ambulance, it happened again this time lasting 8 minutes. I was shouting out for people no longer with us to help make it stop. I was clawing the sofa like I was on a white-knuckle rollercoaster. I was so scared. Thankfully the ambulance arrived and the paramedics were fantastic and then it happened again and then again. I was blue lit to hospital, the ambulance crew rang ahead for my arrival. What I didn’t know then was that I was having focal seizures and they happened on and off for 21 hours. I had well over 100 seizures, in fact I wouldn’t be surprised if it hit the 200 mark. My last seizure was approximately 3pm the next day and I was exhausted both mentally and physically.

The next three weeks were a whirlwind. I eventually got power back in my leg as it went completely numb for days due to the seizures, I pushed to get home for a few days for Chloe’s 10th birthday and on the evening of 29th November (Chloe’s birthday) I made my way to the Royal and was admitted for an embolisation and angiogram the next day in preparation for craniotomy surgery on 1st December. As I left home for hospital I wheeled out our front door with my rollator walker at aged 39 and our 3 kids standing in the hallway. I stayed upbeat and smiling but inside I was petrified. I didn’t know if I was going to see them again, feel their arms wrapped around me or smell their wee individual smells. Not knowing if I was going to see my mum and Jeff again, the rest of my family or friends, even fearing I wouldn’t wake up from the surgery.

Thankfully the operation was a success and I later found out the tumour was benign. I did however spend longer than planned in hospital as a blood clot developed a few days after surgery and it needed to be stable before I got home, which I did on 15th December although Christmas was a blur.

I thought the worst was behind me. I thought all I needed to do now was take all my pills and spend time with my family and watch Netflix and Chill. Sure it was a benign tumour and they got most of it out but little did I know that waiting around the corner was an uphill battle with my mental health and physical wellbeing.

Whilst in hospital I was assessed by the occupational therapist on my cognitive skills. A check that all identifiable brain injured patients undergo. I was referred to the NTBIS from this assessment and this service has proven invaluable to my family and I.

NTBIS is made up of a small team of dedicated and compassionate brain injury professionals in Ballymena. It is a highly specialist service that provides assessment, treatment and management for those with an Acquired Brain Injury*. The service treats patients 18 years and over but overlaps with the Children’s Community Disability Service from the age of 16 to provide a seamless transition to Adult Services.

*Acquired Brain Injury is an injury to the brain caused by an identifiable event such as trauma (a blow to the head), hypoxia (loss of oxygen to the brain), metabolic disorders (e.g. unstable diabetes) or illness/infection (encephalitis / meningitis/tumour).

Those who have sustained their injuries recently are likely to have the greatest potential to benefit from rehabilitation.

The Brain Injury Service focuses on reintegrating patients into family, social, education and work situations. The Service is interdisciplinary and provides holistic multidisciplinary assessments, therapy and rehabilitation programmes that is generally delivered within one of its centres but can be provided within the patients homes and at clinics in Ballymena, Mid Ulster and Whiteabbey.

For further information please visit: https://www.northerntrust.hscni.net/services/brain-injury-service-2/

You are told in hospital that recovery time can take 4-6 months, maybe this is true for a minority but in reality this is not the case. After experiencing a brain injury nothing prepared me for the pathological fatigue and mental struggle of what just happened. The struggles of what my life is now, coming to terms with things I can no longer do - the new temporary me. I call it temporary because having the opportunity to avail of these services early in my rehabilitation I believe I will have a good chance of getting back some, if not all of what I’ve lost.

My first rehab encounter with NTBIS was attending group therapy sessions which helped me realise I’m not alone in this, we all relate to each other. Group has proven to be a crucial resource that I didn’t realise I needed. I honestly don’t know where I would be right now if it weren’t for Group. 3 months post-op my mood dipped and I confided in one of the leaders, within a short space of time I had one-on-one appointments set up with the clinical psychologist within the team. Again, this has proven to be invaluable.

I currently receive help from the occupational therapist (OT) where I’m trying to get my everyday life back on track and reintegrate into society. The OT has also assigned me a support worker to further support this. The OT also runs the Group Therapy Sessions alongside the Clinical Psychologist. NTBIS run live online fatigue management sessions to help patients better understand pathology fatigue and give informed information and tools on how to cope. The team have a Neuro-Physiotherapist (which I am on the waitlist for further physiotherapy) and a nurse. NTBIS provides information to support families of the brain injured through a Welcome Program and offer further services but from a personal perspective, this is what I have had the opportunity to benefit from in my recovery to date.

Group is helping me understand and accept my new temporary self and is playing a massive role in my recovery as is the same with other patients. Even though the tumour is benign, I am still trying to deal with the everyday effects. I’ve learnt that it’s OK to become agitated, sensitive to noise and light and become easily overwhelmed, even the feeling of talking like a robot because I’m so tired. The kids rolling their eyes at me because they have to repeat something they already told me and I’ve forgotten because I’m currently experiencing short term memory loss. Other patients have experienced similar effects and therefore it has given me reassurance and eradicated worry. I have been given answers quicker than waiting on my next hospital appointment or trying to get through to my GP.

Currently the NTBIS need to apply for funding for the group sessions from the NHS Charitable Funds Pot, therefore we would like to try and do something to give back, to ensure projects such as these can and will continue in the future. All money raised would go to the Mental Health, Learning Disability and Community Wellbeing Fund within the Northern Trust Charitable Funds. This means the money will be used to fund projects like the group I have experienced. All the money will go towards projects that support the emotional wellbeing and quality of life of people in our area. They are invaluable and help people not feel so alone. We really want to make a difference and your generosity will be greatly appreciated, however large or small.