Alison is 43, and happily married to Richard and they have 3 children; Emily 18, Sam 16 and Joe . Alison is a qualified Primary School Teacher and for the past few years has been the Music Specialist Teacher at a special school.
I was diagnosed with FND on 12th March 2018. My symptoms are facial dystonia of the right side of my face, involuntary jerks and twitches, muscle spasms, chronic migraines, Chronic constipation, dizziness, lower back pain, achy arms and legs, parasomnia, chronic fatigue and recently developed dystonia of the left hand. I was diagnosed after about a year of going backwards and forwards to the GP, several trips to A&E, MRIs with and without dye, CT scans, a lumbar puncture and nerve conduction tests. All physical tests had come back negative. My neurologist said that he thought I was suffering with stress (as my job is stressful) and that was causing my symptoms. He told me to get counselling through our local NHS, which I did. He seemed to think that this would make it all go away!
Eventually, he agreed to arrange for me to have EEG video telemetry tests as an inpatient over a period of five days. The tests clearly showed involuntary movements and confirmed my parasomnia. It also showed that I slept a lot of the time. This proved that those symptoms at least were real! It was then that he diagnosed FND but he didn’t tell me much about it or how it can be treated. I came away from the appointment feeling quite hopeless. Nobody I know had ever heard of it!
My family and I began to research it online which is when we discovered the FND Hope website. It was such a relief to read all the information about the condition, recognise my symptoms that were listed and learn the clinical names for them, and realise that there is treatment available and hope for control of the symptoms and, possibly, a full recovery. I cried with relief. It saddened me that specialists are few and research is limited. Therefore, I decided to try and raise some money to help. I began a fundraising page on Facebook, through the FND Hope UK Facebook page, explaining my diagnosis and the lack of specialists, treatment and research and shared it with all my friends. I set my goal at £100 as I didn’t expect to make much. HOWEVER, loads of my family, friends, colleagues and acquaintances started making donations. In the end my Facebook amount totalled £579!
In the meantime, I had noticed that the International FND awareness day 13th April was coming up so decided to do an event to raise awareness and a bit more money. I think it helped me to have something positive to think about. I decided to do a café style event with some craft activities and competitions. I thought that this would appeal to all ages. I got my lovely family on board as volunteers and the event took shape. I just prayed that I would be having a “good day” that day. Fortunately I was! We sold tea, coffee, hot chocolate and cold drinks, had a cake sale, a guess the weight of the cake competition, guess how many chocolate eggs are in the jar competition (won by my little nephew who was absolutely over the moon!), a raffle, a decorate a biscuit table and a general art and craft area. I also set up an FND information point with leaflets about FND, the brain and the nervous system. On the café tables I put some FND leaflets and brain teaser activities to link with the whole brain theme and to get people talking. It was a brilliant morning. Family, friends, colleagues, neighbours, and people that I hadn’t seen for years came along to support and I was completely overwhelmed by people’s love and support. The café made £598.57, but, more importantly I was able to talk to lots of people about the condition and many of them took leaflets away with them.
I intend to keep fundraising and raising awareness as much as I can. We will beat this!
Alison, on behalf of FND Hope UK thank you for raising such an amazing amount of money, you are AMAZING! We hope the cake was scrummy, it looked delicious.