Committee Member

My name is Alan Coates I’m 49 years old married to Joanne Coates an ICU nurse in the Royal Victoria Hospital in Belfast, I have 3 children Ryan 26 Katie 20 and Harry 14, and 2 grandchildren Ella and Theo.

In January 2020 whilst taking a phone call out of the blue I basically blanked out nothing made sense I couldn’t speak properly it’s still hard to describe, it was as I know now called a vacancy, over the next few months I was having feelings of deja Vue and fixed staring, being able to go private through work, I spoke with my neurologist in March 2020 and mentioned my symptoms it turned out what I was experiencing was in fact epileptic seizures and I was prescribed medication to help control the seizures whilst being informed I could no longer drive, cycle, swim, or have a bath without someone present, so in the blink of an eye all the things I took for granted were gone for the foreseeable future, so I walked outside handed Joanne the keys explaining everything and off we went, with a scan to follow. Not long after I went for an MRI in the Ulster Independent Clinic in Belfast, I received a call on the 3rd April 2020 to say the scan had showed abnormal cells in the brain most likely a tumour and in the space of 2 or 3 weeks I went from living a normal day to day life, I now had been diagnosed with epilepsy and a brain tumour and my journey in life is on a different path now. Because of the location no biopsy has taken place, I’m basically on watch and wait with yearly scans, for now everything has remained stable long may that continue. My wife Joanne has been the rock especially in the early days when I struggled to come to terms with everything.

Fast forward to today my seizures have been under control now since May 2020 and my last scan showed stable appearances again, so I recently got my driver’s license back for 12 months, I’m as active as I’ve ever been and I took up cold water dipping as well anything I could think of that could possibly benefit me in any way I will look into it. I’ve managed to come to terms again with life make changes and keep a positive outlook on life albeit not every day is easy, sometimes life can creep up on us when we least expect it, but after months of mixed emotions I made the decision to refocus my mind and not look back or into the future but concentrate on what I can control here and now and if I slip and I do I refocus go again and Joanne is right behind me.

I came cross Brainwaves back in 2020 and made contact with them and I’m very glad I did, they welcomed me and straight away I was able to make contact with people in a similar position one way or another, and to be able to talk and meet up at one of their organised events is priceless, an opportunity arose recently to join the committee and I thought if I can help no matter how small then that’s something that I would love to do, brainwaves is a fantastic organisation run by volunteers trying to raise awareness and much needed funds in our continued fight against brain tumours, so if anyone finds themselves in a similar situation Brainwaves is only a phone call away and I’m glad I made contact.