UPDATE 20th August- £4,000 fundraising target reached!

We did it! Such a team effort to get us over the £4,000 target. 

We've walked in the sunshine, we've walked in the rain, we've snowboarded in the alps, we've cycled in the snow, we've run around a palace, we've run by the sea with the dog, we've run the by the sea without the dog... and we've all done it to show our support for Ela and the tremendous work of the Lewy Bodies Society!

The Lewy Body Society was founded in 2006 to support research into Lewy body dementia and to raise awareness of the disease. 

Despite it being the second most common type of dementia, prior to Ela's diagnosis in 2018 none of us had heard of it and even within the medical profession, the subtleties of the illness are often unknown. 

Lewy body dementia causes a progressive decline in cognitive abilities and people often suffer with visual hallucinations/delusions/paranoia aswell as changes in alertness and attention, often from minute to minute. Other symptoms include Parkinson's disease symptoms such as rigid muscles, slow movement, walking difficulty and tremors.

Whilst it shares some symptoms with other forms of dementia, the correct diagnosis of Lewy Bodies Dementia is vital as certain antipsychotic medications can be potentially lethal when given to Lewy Bodies sufferers.

Ela was lucky in that she was asked to take part in a research programme after GP referral and benefitted from a full range of tests and scans (including a DAT scan) to help pinpoint her diagnosis. 

This is sadly not always the case and the diagnosis process and the support offered afterwards remains very patchy.

We have fought hard for Ela to 'borrow' a Parkinsons nurse from another borough, have picked the brains of friends who work as Admiral (Dementia) Nurses in other areas and have repeatedly made a pain of ourselves in A&E departments to try and help Ela stay as well as possible for as long as possible. 

It's been an extremely stressful and heartbreaking process and it shouldn't need to be so hard... 

The Lewy bodies Society aims to educate the public, the medical professions and those in decision-making positions about the disease. Their website is also a fantastic resource for sufferers and their families as they embark on a highly unpredictable and emotionally charged journey with Lewy Bodies.

Your support is very much appreciated as Team Ela virtually walk, jog, cycle and even snowboard 1700kms from London to Krakow... and back again... a total of 3400kms!

We are starting our family challenge on Ela's birthday (13th October) and are aiming to complete on her nameday (8th July).

Watch this space for updates and photo evidence of our endeavours. Many thanks in advance...

Krysia, Peter, Max, Jola, Rohan, Basia, Andy, Aleks, Ela and Gilles x