Participants
Esther Boyd
Participant who’s husband Howard had DLB
We had looked forward to an active retirement, but Howard became frustrated as he felt inefficient and unfit. He had always been a keen cyclist – he rode a tricycle to Egypt with two friends when he was 19 and got a cycling ‘half blue’ at Cambridge University. His varied career ended as a transport engineer, focussing on projects that improved safety for cyclists.
Howard welcomed his diagnosis of DLB (aged 67) as it explained his difficulties. Together we worked hard to slow down the progression of the disorder – and even reversed some symptoms, for about two years, unblocking neural pathways by rapid cycling on a tandem turbo trainer we had set in the garage.
We wanted to meet other people who were affected by LBD. It took 5 years to overcome the obstacle of Data Protection. The peer support that followed lived up to our expectations. After Howard’s death I set up a group, called Lewy Buddies UK. Buddies support each other by sharing experiences, providing a listening ear. The group is growing steadily across the country.
Esther’s Lewy Buddy support group can be contacted by e-mail lewybuddiesuk@gmail.com.
Melanie Jarman
Participant and her mother Roselyn Watson
My mother, a bright, witty, vivacious woman, called me one day because there were children in her house who wouldn’t leave; when I got there I saw no one. While there had been significant signs that something was wrong before that, it was a turning point as it was the first time mum acknowledged she didn’t understand what was happening to her. Those children became both a blessing and curse, and I learned quickly to acknowledge them with her.
Ros was officially diagnosed with LBD in 2019, which came as a relief in many ways. The ‘children’ lived with her until she moved to a care home; she looked after them, and had to be persuaded they would be OK if she went out. When I was clearing her house later, I found plates of food tucked away for them so they wouldn’t go hungry.
Our shared love of knitting, texting (!) and going to the pub, was thwarted early on and caused mum great frustration, especially as she couldn’t understand why. I am learning how to be there for her in different ways now, but I find it impossible to articulate just how much I miss her.
Gill and Jeff Keighley
Participants and their daughter Laura
We met over 40 years ago whilst Jeff was studying for his second Masters degree at Cranfield. As he managed increasingly larger engineering/manufacturing companies, we moved around the country a lot. He was diagnosed in February 2019 after over a year of trying to convince the doctors that he had dementia. It was a relief to get a diagnosis, but support has been patchy and largely only found through Gill’s research.
Our lives have changed hugely as the daily fluctuations in cognition, physical deterioration and levels of hallucination lead to difficulty in making plans for day to day living, with Gill having to take early retirement to care full time for Jeff. The Covid 19 restrictions have certainly had quite an impact on the effect of this disease.
Des O’Sullivan and Valli Yanni
Participants
Des is an accomplished Educational Publishing Project Manager who was diagnosed with DLB 5 years ago, at the age of 60. Valli is a consultant in international development. Des (Irish) and Valli (Egyptian) are based in Oxford and have been married for almost 27 years.
The diagnosis of DLB has forced Des to decide on an early retirement, and Valli to reduce her workload to accompany Des in their shared journey of the ups and downs of LBD. They both have a positive attitude to living well with dementia. They are very open, vocal and articulate about sharing their experience. Their little dog Milo, as well as yoga have kept Des very physically active. Music, films and audio books have kept Des mentally and intellectually stimulated. The support of family and friends and regular meetings with other people living with dementia have sustained Des’ social engagement. Des and Valli are keen advocates for a dementia-friendly society through public speaking and research and media involvement.
‘Living a New Life’ is a short film about Des and Valli’s experience with DLB:
Anita Varey and her late husband George
Participants
We met 50 years ago, in 1972, on a blind date arranged by mutual work friends and married in 1975. From the outset we laughed and were best friends. George was my chum who could lighten up a dark moment with his wit and sense of fun; he was a supportive and encouraging husband who made life fun and was a great ironer; he was approachable and persuasive and was at his best and completely at ease getting to know people whatever their background or circumstances. He could also be stubborn and refuse to give in about things that in due course he’d agree didn’t matter that much.
George was diagnosed finally in 2019 having pressed clinicians to consider Lewy Body dementia as the cause of the various symptoms we had experienced for some time. The hallucinations began slowly but became more noticeable and frequent including when he was acting out dreams. I noticed his demeanour gradually change as he became afraid and uncertain eventually becoming withdrawn and worried. He often said he was lonely as he became more isolated in this ‘other’ world without the real and familiar people and things that give us comfort.
George and I readily did what we were able to raise awareness and contribute to research about DLB including. The last years of George’s life were blighted by Lewy Body Dementia which had crept up on us for several years but even then he readily volunteered to take part in research towards establishing cause and effect. This included contributing to Another Presence to help others to understand what people experience when they have hallucinations of seeing people and objects that aren’t there.
Also featuring testimonies from
David Slater and Fiona Geddes
Philip and Helen Robins
