To blog or not to blog……

Whilst looking at the FNDFrieNDS twitter account this morning, I came across The Chronically Awesome Foundation, an American organisation which strives to reduce the social isolation using the arts, with particular focus on crafting, blogging and photography to name but a few. I  was particularly taken by some ideas, thoughts, questions, and ways of coping with the myriad of emotions that an altered life can produce. One section, entitled Why ask Why? looks at how, when diagnosed with a chronic illness it is very easy to spend a lot of time looking back, grieving for the life lost. Why me? …

The start of something big……

We all know that FND is a difficult diagnosis to be given. It often feels like a diagnosis reached because of the lack of any positive tests. It frequently is a diagnosis that is given and then the patient is discharged, with no follow-up support, help or information. Patients with the diagnosis can be disbelieved in A & E, causing stress, frustration and anger which can result in the worsening of symptoms. I have been given the opportunity to talk to senior managers in UBHT, with the aim to improve prospects for patients treated there. I would be very interested…

Neuroscience research talks in the SouthWest

‘A Pint of Science’ is a series of talks held in public venues on the 15th 16th and 17th May, where researchers convey their findings to the public. The topics are wide and varied including: understanding and new treatments for Epilepsy (Prof Liam Gray, Cardiff and Lauric Ferrat, Exeter); memory (Prof Kim Graham, Cardiff), Computers vs brains (Cian O’Donnell, Bristol) Rewiring the brain (Dr Chris Bailey, Bath) Whilst there aren’t any talks that are FND related, there are those seeking to understand and help those with PTSD  or autism (Bournemouth). And of course there are many talks that are not…

One year anniversary

BristolFND is soon to have its first anniversary! Many things have happened during this year: FND now has two charities in the UK to support those with the condition, with a third on the way; we have created an active online support network and have held regular meet-ups. However, most importantly, we have decided the direction that BristolFND is going to take, and how we are going to augment the other good work that is being done. BristolFND started as a support group for FND sufferers by FND sufferers. It’s initial aims were to help those in Bristol through creating…

New beginnings

January is traditionally the month for new beginnings. BristolFND is starting to move into a new era, as we hold our first AGM tonight. I for one am quite excited about this, as it gives us the chance to re-evaluate what we have done, what we want to do and how we are going to go about doing it. BristolFND was started as an attempt to create a community in which people affected with the disorder can support each other through difficult times. So far we have held a number of social meetings, a number of business meetings and we…

ANNUAL GENERAL MEETING AGENDA

1/ DISCUSS OUR OBJECTIVES,AIMS AND TARGETS 2/ DRAW UP OUR CHARTER. 3/ LEAFLETS AND PRINTING. 4/ BANKING. 5/ MOBILE PHONE. 6/ TRAINING COURSE. 7/ LUCY UPDATE. 8/ FACEBOOK AND ITS USES AND CONTROL. 9/ WEBSITE AND ITS USES. NEW DESIGN INLUDING LOGO. 10/ ANY OTHER BUSINESS. AS USUAL WE WILL HAVE AN HOUR FOR CHAT AND FOOD, BEFORE WE START MEETING. WE HAVE A LOT TO DISCUSS AS ITS OUR ANNUAL GENERAL MEETING SO WILL TRYING TO CUT INTRODUCTIONS DOWN TO AN HOUR MAX. ANY NEW MEMBERS ARE WELCOME AS USUAL, THERE ARE QUITE A FEW NEW MEMBERS AND IT…

MOBILE PHONE

HI ALL WE NOW HAVE A MOBILE PHONE NUMBER, WHICH IS 07900 905937, THE PHONE WILL BE HANDED AROUND THE GROUP ON A MONTHLY BASES I ( KEVIN ) CURRENTLY HAVE THE PHONE IF ANYONE HAS ANY QUESTIONS YOU CAN CALL ME WETHER YOUR A NEW MEMBER WITH A QUESTION OR SOMEONE FROM FND IN NEED OF A CHAT THEN FEEL FREE TO CALL. I WOULD ALSO LIKE TO WISH MARK ALL THE BEST IN HIS FIGHT AGAINST CANCER, MARK IS DUE TO HAVE AN 8 HOUR OP IN THE COMING WEEKS, IM SURE YOU ALL JOIN ME IN WISHING…