Daffodil Posted June 30, 2016 Share Posted June 30, 2016 The Brain and Spine Organisation publish a good set of literature on SAH which My family was given after my SAH , they run a helpline which I have called in the past and now they are organising their first ever conference solely about 'life after SAH' this November at the National Hospital in London which is where I was lucky enough to be treated. The agenda looks pretty good, I have personally met the Neuro physiologists speaking as they ran 6 group sessions I attended post my pysch testing over a year an a half on to help me develop some techniques to help cope with my cognitive challenges and they were very helpful and run this course throughout the year so will have picked ul a lot of experiences I am sure. It's a full day which might be a little much for any one in early days post bleed but maybe useful for a carer also? Anyway thought I would share. It costs £10 and maybe worth it for anyone within travel distance. http://www.brainandspine.org.uk/life-after-subarachnoid-haemorrhage-conference 1 Quote Link to comment Share on other sites More sharing options...
Super Mario Posted July 1, 2016 Share Posted July 1, 2016 It sounds very interesting and I would love to go but sadly the distance is a bar. Are you going Daff? If you are, could you give us feedback please? Quote Link to comment Share on other sites More sharing options...
Macca Posted July 1, 2016 Share Posted July 1, 2016 Hi Daff, Sadly too far away for me, but if there are any slides or handouts available they would be useful and informative. Could we get these - they might be interesting to scan and publish on the site as a useful resource (after checking for context etc etc)? Macca Quote Link to comment Share on other sites More sharing options...
Daffodil Posted July 1, 2016 Author Share Posted July 1, 2016 Macca that's a great idea, I will contact them as ask if that is possible.SM I'm not sure to be honest . I have a couple of check ups planned this year, one with the hydrocephalus team in August and another in December for my annual so not sure if I want to spend another full day up there with them brilliant though they are. Also I am not sure how much benefit for me with all the support I have had to date plus learnt from BTG but I wonder if someone who is maybe a little earlier on in recovery might find it more of use and if they decide to go might volunteer to share if they do. 1 Quote Link to comment Share on other sites More sharing options...
Karen Posted July 1, 2016 Share Posted July 1, 2016 I can see that the lovely Lesley Foulkes will be speaking.... she was one of my neuro specialist nurses at Southampton and has always participated in life post SAH/research and has contributed to many medical papers and still helps to run the support group at Southampton, as well as doing her day job.... I've got a lot of admiration for her. I'm not sure if the Brain and Spine Foundation will share with us .... they're a great charity and I would imagine that any info, would be on their website after the event, so if anybody finds a link to that info, just post. xx Quote Link to comment Share on other sites More sharing options...
Daffodil Posted December 2, 2016 Author Share Posted December 2, 2016 So this conference went ahead and the speakers have all shared their presentations which you can find visiting the Brain and Spine site http://www.brainandspine.org.uk/news/201611/bsf-organises-uks-first-sah-conference-patients-and-carers and following the links for the slides. It apparently was good and I thought worth sharing as I thought some good information in the slides. Kavitas video log of her SAH journey is worth a watch if you have some time on your hands and the slides from Clinical Neuropsychologist Dr Lynne Aitkenhead slides cover memory and cognitive problems after a SAH and stressed the fact that short term memory loss and attention problems are extremely common after a SAH but there are many things you can do to improve your memory such as keeping a diary and using certain mobile apps that help manage daily life. Clinical Psychologist Dr Sabah Khan ( who ran the sessions I attended at Queens Square) talked about relationships after a SAH. Her talk was focused mainly on analysing feelings and psychological behaviour of couples affected by a SAH. She explained the processes and stages which people go through if they themselves have gone through a SAH and how it affects their loved ones. I would have loved to have heard that one. If anyone reading went along it would be great to have some nuggets . I still think Brain and Spine do the best literature on SAH, it was all we as a family were given and theirs and Headways booklets were so helpful in my early understanding 1 Quote Link to comment Share on other sites More sharing options...
Daffodil Posted September 7, 2017 Author Share Posted September 7, 2017 Hi, I was late to see this to share but the Brain and Spine Organisation are running another event this year for careers and survivors in London on 16th September 2017 on "life after SAH" May be useful ful for anyone who might be able to make it. I was treated at The National and credit a huge part of my recovery to date to the support and access to care they have given me ever since and their staff are supporting this initiative, https://www.eventbrite.co.uk/e/life-after-sah-a-half-day-workshop-for-patients-and-carers-tickets-35930683642?aff=erelexpmlt is the link for the event to register of know more. 2 1 Quote Link to comment Share on other sites More sharing options...
Daffodil Posted October 2, 2017 Author Share Posted October 2, 2017 The organisers have shared the slides from this event, the slides on fatigue management and exercise are really useful https://www.brainandspine.org.uk/news/201709/presentation-slides-sah-workshop 1 1 Quote Link to comment Share on other sites More sharing options...
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