New blog for a new domain…

For a number of reasons, we are having to transfer all of our information from this domain name (www.bristolfnd.org) to our new domain (www.fndfriends.org). From now on, all new blog posts, and any other information that is put on our website, will be using this new domain name. There will be a period of overlap, and so don’t worry if you are unable to find the new website to start off.  The new blog address is https://fndfriends.org/blog/.  If you have any problems, please do not hesitate to contact us using the ways listed here.    

Let’s just wait and see.

When I was first diagnosed with FND, both my feet faced the right direction. At the time, this didn’t seem like a particularly remarkable fact, just as it wouldn’t seem worthy of a mention for most people. As the disorder progressed for me though, my right foot had a life of its own, and started to face inwards, a situation diagnosed as functional dystonia. To start with this was not too problematic as, with concentration, I could straighten my foot so that I could wear shoes. However, as time passed it became harder to rectify until finally the dystonia became…

Carers in Bristol and South Gloucestershire

Without my carer, I would be stuck. I think I’m right in saying that for an awful lot of people with FND. My carer, my husband, has taken on all the domestic tasks, a lot of the child care, as well as providing for us all by working full time, and ensuring that there is a meal on the table at the end of the day. I say thank you to him for all his hard work, but I’m not sure that this is enough sometimes, although I cannot think what else I can do. One option is to find…

Have your say

We have become aware of an opportunity for Bristol residents to have a say in healthcare. Healthwatch Bristol are inviting people to tell them their stories about how, where, when, who was involved in their healthcare, and what they would like to change. Stories are then passed onto service providers & funders, with the aim that services can be changed for the better. There are many ways in which stories can be shared: http://www.healthwatchbristol.co.uk info@healthwatchbristol.co.uk 0117 2690400 Twitter @HWBristol Facebook bristolhealthwatch Post Freepost RSBS-YBHY-RYLL Healthwatch Bristol The Care Forum The Vassall Centre Gill Avenue, Bristol BS16 2QQ

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…