The People’s Forum is a group of volunteers who work with the Board of Epilepsy Connections to maintain and develop services. The main roles of the People’s Forum are to
- Feedback to the Board relevant ideas and suggestions that will help to:
- maintain and develop existing services
- maintain and develop communication between Epilepsy Connections and its existing and potential service users
- fill perceived gaps in services
- Respond to requests from the Board and the Executive Director to:
- contribute short-life working groups
- carry out small-scale tasks or research relevant to maintaining and developing services.
My name is Mary Antczak, I live in Falkirk. I have 2 daughters and four granddaughters who keep me very busy. I was delighted to be asked to join the Forum to represent Forth Valley Area.
Epilepsy Connections have given me a lot of support and allowed me to make lots of new friends and I look forward to future meetings.
I have recently become interested in politics which came as quite a surprise. I take an active part in our local community and enjoy attending our local church.
My name is James Berrington and I am 62 years old. I took early retirement from work and within 2 years I had been diagnosed with epilepsy at the age of 60. I have tonic clonic epilepsy. Finding out this diagnosis came as quite a shock to me. I had had 3 mini strokes but had no real reason of this at all.
One day I woke up and realized I had bit my lip and tongue during the night and made it bleed I went to the doctor. The biting of the tongue and lip is an indication of a small seizure. Within a few weeks I fell out of bed having a full seizure with jerking of my limbs and not knowing where I was. An ambulance was called and I ended up in hospital where I was diagnosed as having epilepsy. I thought epilepsy was there when you were born; not something you were diagnosed with later in life. This has been an eye opener. It is not rare for people to be diagnosed with epilepsy in later life.
I wanted to be part of the people’s forum to gain knowledge from others and to impart the little knowledge I have. As a group we can share and let others know that with medication we can lead a normal life.
I’m John Bruce. I’m 57; I live in Glasgow and have a son and a daughter. I was diagnosed with epilepsy about 10 years ago. Due to the severity of my seizures and the length of recovery time, I had to give up work and close my graphic design business. However, since then I have become involved with Epilepsy Connections, taking advantage of their groups.
Since my diagnosis, I have qualified as a Life Coach and NLP Practitioner, which allows me to explore my interest in alternative therapies. I am also a member of “Neurological Voices”, a group set up in the Queen Elizabeth University hospital, supported by senior medical and admin staff, as a voice for people with various neurological conditions to help improve their medical experience from diagnosis onwards.
I decided to do this because there have been many mistakes made in my life because not many people have complex partial epilepsy like me and I’ve had to work out each problem as it came along. I was diagnosed with epilepsy at two but the complex partial fits were not recognised till I was in my teens. It goes in a 7 – 8 year cycle which means that every 8 years I lose 2 years with months of depression. Others say I’m like two different people and some think I’m putting it on. I wish you were allowed a little understanding as it changes you physically and mentally.
I am a parent of a service user who developed epilepsy when he was 3 years old. His seizures have proved very difficult to control and he has tried many different treatments.
I joined People’s Forum with the aim of ensuring that the needs and rights of young people like my son are met and also that they are able to achieve their full potential.
One of the reasons I joined was to contribute something to Epilepsy Connections who have provided great support to our family over many years.
My name is Carol McNeil and I am 58 years old. I live in Grangemouth and have two daughters and three grandchildren. I have had epilepsy for 44 years and been in numerous situations due to the seizures. I was diagnosed when I was 14. I have tonic clonic seizures but three years ago I had a couple of drop seizures. With the support of family and friends I have managed to lead a relatively normal life.
I worked as a legal secretary then as a paralegal in a Solicitors office for 17 years. I am not working at present. I love to keep active and go to the gym when I can. I enjoy the internet and socialising with friends. I am delighted to be part of the People’s Forum as I feel that together we can help to improve the lives of people with Epilepsy.
I am Ruth’s Dad. Ruth has a genetic condition that affects all her development; she has a profound learning disability and is non-verbal. She then started having seizures and was diagnosed with epilepsy when she was 8 years old in 2011. Despite these difficulties in her life, Ruth is a lively young person who lives for the moment. She loved being with the Epilepsy Connections outdoor activity weekend in Ardentinny. I loved being there too and I enjoy working with others, to bring us closer together for shared understanding and positive change. Due to Ruth’s situation I have a particular interest in the impact of epilepsy on children and young people with learning disabilities and their families.
My name is Joe Neeson. I was diagnosed with epilepsy 3 years ago. At the time I thought I would be able to cope and it would be like taking another pill. How wrong I was. The devastating effect on my life was something I did not expect but I want to use my experience to good use by becoming a member of the People’s Forum. I had to give up work due to the frequency of seizures which I found really difficult. The road back to recovery is a long slow process as we all know.
I have worked in mental health for over twenty-five years which gives me a bit of insight into how staff work within the care sector. My daughter is deaf blind which means I’ve been a carer for over 30 years or, as my daughter calls me, the bank. I’m also on the Parents forum at Sense in Scotland and we have been campaigning on having the welfare reforms regarding PIP abolished. I have also, in the past, been a union rep and health and safety officer so I’ve been trying to look after staff, carers and service users all my working life.
It at any time anyone wants to contact me for a chat, through Epilepsy Connections office, I would be more than willing to do so.
My name is Paul Patrick. I am 27 years of age. I was diagnosed with epilepsy in July 2015 and I joined Epilepsy Connections in August 2015.
Over the year, I have joined the allotment group on a Friday and Friends Connected. Taking part in these activities has benefited me a lot.
My name is Gillian Stewart and I am 30 years old and come from Bishopton. I left school in 5th year and attended a 3 year course at ‘Reid Kerr College’ on ‘Sports Coaching and Development’ where I graduated. I then got a full time position with Renfrewshire Leisure as a leisure attendant/coach and I have been doing this job for 14 years now.
I have suffered from ‘Temporal Lobe Epilepsy’ where I take ‘Complex Partial Seizures’ since the age of 14 months. I found out about Epilepsy Connections when I was 27 years old, from then I started taking part in the children’s trips/activities and also do befriending which I feel has given me more confidence working with others that suffer from the same condition as myself.
With working in the leisure industry I enjoy taking part in classes when I can, especially Zumba. I like to keep active as much as I can and enjoy socialising and meeting new people and having a good time.