Your Stories
Your Stories
MY BRAIN AND ME
My Brain and Me is a unique project to share stories and experiences of encephalitis through a series of short films. You can find all the films here and on our YouTube channel, on our “My Brain and Me” playlist.
If you are in any way affected by these stories please do get in touch with our support team on support@encephalitis.info or call +44(0)1653 699599.
Our My Brain and Me Project is proudly supported by the National Lottery Community Fund.
Steve's Story - Part Two
Steve’s Story – From the outside Summer 2018. Read Part One The start Looking back there were signs from as early as July 2018 (writes Lisa). Steve had completed a half marathon on a hot day and, in the weeks afterwards, he started to describe his calf muscles as ‘bags of snakes’ – they were […]
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Steve's Story - Part One
My name is Steve and I work as a trainer within a social services setting. I am a runner (ultra/full/half-marathons), I surf, outdoor swim, mountain bike, play tennis, badminton and occasionally even table tennis. I love to move! That is a truth. Basically any sport outdoors I will give a go. I tell all this […]
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Tony's Story
Sheesh…now where exactly does one start? Since September 2012 I’ve told this story to so many people it’s unreal, but I do think that it’s always been for a slightly different audience to what this telling of the tale probably is. Firstly some of the people reading this will actually know what encephalitis is whereas […]
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Sue's Story
Sue talks about her experiences with meningoencephalitis, its diagnosis, her treatment and recovery. If you are affected by this story at all we encourage you to get in touch with our support team
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Veronique's Story
This is a documentary about Veronique by Attitude Read Veronique’s Weird Wonderful Brain blog It all started pretty suddenly for me. I was vacuuming when I felt like something had hit me behind the head leaving me headachy and foggy. Never having been troubled by headaches before, I thought to myself “I must be tired… early […]
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Yvonne's Story
One Saturday night at the end of January 2013, I lost my sense of taste, and was unable to eat my evening meal. It was no big deal; after all, this had to be the symptoms of a stomach bug, didn’t it? By the next day, I was vomiting profusely and I was losing sensation […]
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Shawn's Story
I woke up with pain in my eye. I usually do not have pain in my eye, unless I stick something in there. I hadn’t, so I thought I’d better pay attention to what was going on. The pain was severe enough that I felt it warranted a visit to the hospital in the hopes […]
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Ross' Story
Ross, from Australia, had encephalitis two years ago. The 63-year-old writes about his recovery and how his love of the ocean and surfing has helped his recovery. “During the first six months of recovery my physical well-being was shot, and my mental state was crazy. I slept a lot and I had no memory […]
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Richard's Story
Richard, who was affected by encephalitis in his early 20s, shares his story with us. He shares his experiences of the after-effects of his encephalitis, his interest in mindfulness, and living in the present. If you are affected by this story at all we encourage you to get in touch with our support team support@encephalitis.info
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Richard's Story
Richard is a conductor and artistic director at Burlington Choral Society in Vermont, USA. I cried several times yesterday as I watched the 2015 movie about the lives of Danish painters Lili Elbe and Gerda Wegener called “The Danish Girl.” I recommend it highly, though I have no way of knowing whether you will respond the way […]
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Reggie's Story
Reggie was four-years-old when he became poorly with COVID-19 encephalitis. His parents tell his story. Sunday, the 7th of February, 2021, was a day we as a family will never forget as this was the start of something that would change our thought process through life forever. Our son Reggie, four, started out with […]
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Rachel's Story
It was Saturday night, and I’d been out to see a friend’s band play, usually one of my favourite things to do. Anyone who knows me knows I love music and I love to dance. I remember towards the end of the night every chord jangled in my head. This wasn’t normal! I had a […]
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Polly's Story
My name is Polly, I’m 23 years old, and on 25th April 2018, things took a bit of a turn for the worse! At the start of January 2018, I packed my bags and set off to New Zealand on a working holiday visa. I was having an amazing start to my year away, travelling […]
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Pete's Story
Viral encephalitis: the first seven months ‘Errr, I really don’t feel well. Errr, early start but must make it up to the Snow Roads Scenic Route – last day of construction, can’t miss that. And then back to the office for financial year end!’ Three days later, thanks to the smartness, persistence and care of […]
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Paul's Story
For years I was in the ‘wilderness’ of recovery after I suffered encephalitis in 2002/2003. My family and I struggled to come to terms with the person I had become. In one of my many visits to the neurologists, I was told I would never work again, something that for a time destroyed what little […]
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Pauline's Story
Pauline was affected by autoimmune LGI1 encephalitis in 2015 and then again in 2017. Here she shares her story and experiences with us. This film is part of our My Brain and Me Project. If you are affected by this story at all we encourage you to get in touch with our support team
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Nicholas' Story - 5 years on
Nicholas died in July 2018 after a tortuous battle with Encephalitis over twenty years, which affected his mind and body; he was only 36 years old. As parents we have had to deal with the fact that our only son died before us and the impact and grief that followed not only for us but our […]
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Natasha's Story
I was a happy and healthy toddler – walking, talking and generally trashing the tidy house by the time I was two years-old. But a few months after I turned two, in 1996, I was struck down with encephalitis. After a few weeks in hospital, I made a good and full recovery and was able […]
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Michele's Story - Part Three
On the 5th September 2014, after a lot of hassling on our part we finally got Ross transferred back to Norwich where he was admitted to the Hellesdon Secure Unit. Ross had his own room. It was a very secure unit with a strict visiting regime but, as a family, we were not going to accept […]
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Michele's Story - Part Two
Over the next day or two we did little walks and went for lunch, in hindsight I now recall Ross again coughing and also sweating when eating. Ross was not sleeping at all and was becoming very distressed. We arranged a back and shoulder massage for him and he tried breathing exercises as well. Nothing […]
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Michele's Story - Part One
If there is one thing I’ve learnt as I have got older is the fact that we cannot control everything that life throws at us. I realise that we can only keep hope and faith but along with that we can and must fight for our loved ones when they need us most and always, […]
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Martin's Story
My encephalitis journey: coping with a re-designed mind In December 2014, my life was going as expected. I had completed an MBA at the age of 40 in 2010, and was working as a senior manager in a large organisation. I had a beautiful fiancée and was looking forward to an incredible future – life […]
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Mark's Story
Mark became ill with viral encephalitis caused by the Epstein Bar Virus when he was a teenager. Now 33, he reflects on his journey. I feel ill in my first year of college at the age of 17. My parents told me at the time I was complaining of headaches in the run up to […]
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Maddy's Story
Maddy is a 21-year-old who was diagnosed with Hashimoto’s encephalitis at the age of 16. Maddy speaks of her experience with her disease and the impact it hass had on her life going through high school and college. She encourages people to ‘defy expectations’ in life by letting go of what we think life should […]
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