The Lewy Body Society is delighted to have been selected as the Charity to benefit from this year’s Dementia Awareness Day or D.A.D day. Lewy Body Dementia is the second largest class of dementia known but it is not widely understood, even within the medical profession. Being chosen as the focus charity for ‘DAD’ will help raise our profile further.
Please help by organising an event any time between now and Sept 15th (The Big day). Sponsored “ANYTHINGS” are always welcomed. A just giving page will be set up soon to make sure that every penny donated will go straight to the Lewy Body Society. We will add more news as it becomes available.
We are delighted to announce that a Senior Engagement and Partnerships Officer has been appointed to work jointly between the Lewy Body Society and Parkinson’s UK commencing at the end of February 2012. More details will follow soon. There has been an excellent response to the Society funded research grant advertisement and a decision about the successful recipient(s) will be made by expert reviewers in the next few weeks. This means that we will be continuing to fund the highest quality research into DLB. We are also pleased to tell you that the Government have invested in a specialist research unit focussed on Lewy body dementias. Based in Newcastle upon Tyne and funded to the tune of £1million per year over the next four years, the National Institute for Health Research (NIHR) Biomedical Research Unit in Lewy Body Dementias will serve as a centre to support national and international research collaborations. A primary aim of BRUs is to conduct research which has direct impact on patient treatment and care in the shortest possible time. For more see NIHR and Newcastle University Medical Research
Sarah Mothershaw is running in the Brighton Half Marathon 2012 on Sunday 19th February 2012. She is raising money in memory of Michael Winson for the Lewybody Society. Please support Sarah at her Just Giving Page.
The Lewy Body Society is supporting an innovation grant under the Parkinson’s UK award scheme. For more information use this link.
Our office will close at 1pm on Friday 23rd December and reopen at 9am on Wednesday 4th January, 2012.
Jenny Thomas wanted to write about a person who has a disease which slowly destroys the ability to communicate or recognise anyone, causes the loss of bodily functions, forces dependency and dehumanises the sufferer – as Lewy body dementia did to her mother. So during the six years that they struggled with the disease, Jenny wrote a diary, which is now a published paperback – Over Streams and Squirrel Woods’ by Alys Williams £8.82 on Amazon or £4.58 as a Kindle e book. Jenny says that she would love to have has this book to read at the time, and hopethat it helps others. All profits will go to the Alzheimers Society.
More and more people are now being diagnosed with DLB – how does it feel if you know that it is happening to you?
“Some sufferers have said that it enriches awareness and acts as a prism through which life is viewed differently. I could see that fantasy and reality merged in my Mum’s mind and often wondered if she had an alternative world where her insecurities and fears manifested themselves as monsters and where she was powerful, resourceful and a leader, in contrast to her claustrophobic, trapped and deteriorating reality. Hopefully the human brain can still be creative and powerful even when it is damaged by plaques and tangles.
I have imagined her thoughts based on what she said to me and from what I observed and have described factually and honestly the journey we took together. Recording my experience of her illness, treatment and life in two nursing homes made me question what constitutes identity, self and the soul and be appalled by the way we treat our elderly, corralling and containing them and be shocked by our lack of effort to communicate with those with dementia.”
‘Over Streams and Squirrel Woods’ explores what can happen when reality becomes too painful, and the disconnection between people when they see and hear differently from one another. It is about boundless love, frustration, guilt and the inexorable inevitability of aging.
“This is a valuable addition to the dementia literature, rewriting our expectation of what those with dementia can think.” John Suchet.
Jim McIntosh plans to run the Dublin Marathon on October 29 2012 and wants you to support him in memory of his Dad, Douglas McIntosh, who died in July 2009 after suffering from Lewy Body Dementia for 12+ months.
Jim’s Just Giving Link.
On September 18th 2011, Alex Haydock ran the Great North Run to raise money for the Lewy Body Society. His aunt Susan Hill joined his fundraising activity and between them both they now hope to raise a total of £1400 for the society. This is a terrific effort and the society is grateful to them both.
Alex’s Granddad suffers from Lewy Body Dementia.
Jane Johnston & and Daughter Sarah ran this year’s Great North Run in Memory of Jim Johnston who recently died from Lewy Body Dementia. The GNR is 13 miles long so it is a great effort and very well done Jane and Sarah. Thank you for the £100 raised.
On September 18th 2011, Alex Haydock ran the Great North Run in Newcastle in 1 hour 56 minutes. He ran the 13.1 miles to raise awareness for the Lewy Body Society because his Grandad suffers from Dementia with Lewy Bodies (DLB). He picked the Great North Run as his Grandad and half of Alex’s family reside in the area. He has fond childhood memories of the two of them watching the Great North Run on TV and so it seemed the logical choice.
Alex found that the event itself was an amazing experience with such a great atmosphere and with so many people running for so many good causes.
He said that “It is very sad to see someone you love suffer from such a terrible disease for which there is no cure” and he asks for your support in raising awareness of DLB. Please sponsor Alex by clicking the link to his ‘Just Giving Page’.
