Like every person with a cavernoma my story and experience is unique, though the story is also very similar. Cycling is a common theme: my first seizure took place in October 2008 after a cycle ride, I then cycled to Paris in 2009 fundraising on my 60th birthday, and I had a seizure two years ago whilst cycling. Like many members I was initially misdiagnosed, and it was only after a second seizure whilst alone in a hotel room in London in February 2009 that a fresh look was taken at my scans and I was given the diagnosis of a cavernoma. Within hours I’d googled my condition, and made my first contact with Cavernoma Alliance UK, and was welcomed to this new community by Ian Stuart. The 2009 June Forum came soon afterwards, I met Ian, and before long I was a trustee, inspired by Ian and his work.
I counted myself lucky in so many ways: I was able to carry on working full time despite the loss of my driving licence, my cavernoma manifested itself very late in my life, its particular location in my brain means that I do not suffer too many problems – though four days ago, in May 2015, I temporarily and suddenly lost the use of the right side of my body. Luckily this time I wasn’t cycling.
Being a trustee of Cavernoma Alliance UK was a wonderful experience. I was able to support Ian when attending conferences of neurosurgeons and neurologists. I met inspirational people, both fellow members, supporters and professionals. I attended receptions at the House of Commons. And although I myself do not need medication (ok, I get away with refusing it) or surgery, it has been so empowering to be able to give support to Cavernoma Alliance UK as it grows, and it gives even better support and advice to members.
I do still cycle, though like my regular weekly one-mile swim it now takes place with the support of a “buddy”. I remain distinctly Pollyanna-ish, enthusiastic and extrovert, and I look forward to attending more international forums.