My Grandad was diagnosed with Lewy Body Disease, also known as Lewy Body Dementia (LBD) shortly after my nanna passed away. Coping with the loss of the most inspirational woman in our family was too much to take. My grandad's pain and loss impacted significantly on his health and it was here that we noticed the early signs of LBD. At first we noticed strange things he'd say or do, then the hallucinations started, and he got progressively worse.

It would be easy to label my grandad as a sufferer of LBD and leave it at that, but there's so much more to him than just a label. My grandad is my hero, he's always put his family first no matter what, he'd not see any of us go without even when times were tough, he fought in WWII in Burma and as his LBD progressed he became more open to telling stories about the war despite it being something we never spoke of growing up.

My grandad was always a proud man who liked to look his best, have his hair just right, liked to know we were all safe and working hard. He is so proud of his children and all 9 of his grandchildren (of which I am 1). He was very accepting of our individuality and although my grandparents didnt always totally understand some of the choices and decisions we made they always believed in our potential to achieve anything we worked hard to achieve.

He's always had an amazing sense of humour which I believe is the strongest trait I've inherited from him, he always liked to cause a bit of mischief and quite often got told off from nanna who kept him and the rest of us right. As his LBD progressed it became difficult at times to distinguish between genuine mischievous behaviour and his LBD but we'd like to believe that it was his sense of humour still fighting through until the end.

He's always been totally devoted to my nanna who we all miss dearly, he's been so loving and so important to me that it was so painful to watch his deterioration with LBD and other health problems. Grandad lost his fight to LBD on 22/07/12, and I believe in my heart that he chose his moment to leave us and nanna was there with him to lead the way... and probably tell him off for wondering what took him so long as his tea was getting cold, probably swiftly followed by a whole host of excuses finished off with "you stupid woman!" meant in the most affectionate way of course!

On the LBD journey we've had to face milestones together including him leaving the flat he shared with my nanna to sheltered accommodation, accepting our limitations in the support we could provide as a family and the heartbreaking decision to move him to a care home which didnt come easily for any of us, and then his move to an EMI unit in the home where he went peacefully in his sleep.

Seeing him deteriorate meant that each visit we were left saying goodbye, but not only because that visit had come to an end but also because we knew next time we saw him a little bit more of the man we loved might have been lost to the disease. Now that he's gone he's no longer being tormented by LBD and host of other health problems, yet it doesnt make the pain of losing such an important and loved member of the family any easier.

Until his diagnosis we as a family knew very little about dementia and even less about LBD. Together we have been learning through experience. The Lewy Body Society provides an enormous amount of information and along the way I've found people, both with the disease and their families which has been a comfort. Gradually the news is getting out there to raise awareness and due to the impact on my whole family I feel that I personally need to play a part in spreading the news about LBD and the impact it has on so many people on so many levels.

The Lewy Body Society is a registered charity whose purpose is to fund research into LBD. The patron for the society is June Brown MBE whose husband died of LBD. The society's community focus helps to bring together those who suffer with the disease and their carers and families. Their website provides information which I've found really informative, and their Facebook page helps to keep the community spirit and support going when you need to talk to someone who knows some of how you really feel from shared experiences. They have helped me to better understand the disease and what we can expect, it also shows others the impact of LBD which makes it easier to show others in addition to sharing our family's story. They also can direct people to groups working in all aspects of dementia care and research as well as other important information sources and books. The Lewy Body Society is the ONLY organisation in the whole of Europe dedicated solely to LBD, providing information and sponsoring research.

Through donations and raising money we can work together to raise awareness of LBD and its effects on whole families, like mine. It is essential that this awareness continues and the Society can continue sponsoring research into the disease in the hope of prevention, better treatments, and maybe one day a cure.

Please help, please donate what you can.

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