Story
18th December 2023
In loving memory of Kamlesh Jain, we invite you to join us in honoring her legacy by contributing to the Alzheimer's Society. As we commemorate a life well-lived, we aim to make a lasting impact by supporting research, care, and advocacy for those affected by Alzheimer's and related dementias. Your donation will help ensure that future generations facing this challenging disease receive the support and resources they need.
Prior to 18th December 2023
My Grandma's Story
My grandma is trapped.
Once a vibrant light of our family. She was independent, house proud, an artisanal cook who had a deft dry wit, she was a figure in the local community and extremely doting. She used to travel, organise community events and look after her grandchildren.
However, her ability to lead the life she loved was taken from her. Seven years ago, aged only 67, my grandma was diagnosed with dementia (dementia with Lewy bodies), a ‘decline in mental ability severe enough to interfere with daily life which gradually inhibits one’s ability to think and move’. Dementia is thought to be caused by a gradual breakdown of neurons in the brain. Dementia is not a normal part of ageing it’s the ‘umbrella’ term used to describe a range of symptoms associated with cognitive impairment caused by diseases such as Alzheimer’s disease, Vascular dementia and Dementia with Lewy Bodies etc.
As the days pass my Grandma’s, or as we call her Nani, condition compromises more of her life. Her brain has been significantly damaged by dementia. She has lost the ability to walk. She can’t talk or express how she feels to anyone despite her most sincere efforts. I cannot comprehend how perturbed and frustrated she must feel. She cannot eat without being fed nor sleep without hallucinating. But she still understands, she still seems to have a degree of awareness which is diminishing daily. She has been robbed of her individuality as if her mind is being held captive by her body.
Nani is in her early 70s, she had often worked tirelessly 7 days a week to help support her family. She has a debilitating disease and to this day I’ve never heard her complain. For me, her ability to endure such torment is fundamentally confounding.
Through my grandma’s experiences with dementia, I decided it was best to try to understand more about dementia. Research showed that with our current ageing population as well as a lack of disease-modifying treatment, dementia is a disease that does and is going to affect many loved ones including their families and friends. Such was the case of my granduncle (lovingly called 'Nanu') who suffered from Alzheimer’s.
Nanu's Story (My Grand Uncle)
"Nanu was a successful businessman in his prime years working in clothing retail. He was very independent and happily retired aged 60 allowing him to pursue his love of gardening, travel and spending quality time with his family. He was very content and happy with life. Nanu achieved everything he set out to do when he left India as a young man aged 21.
In late 2017, Nanu was diagnosed with Alzheimer's Disease. This changed him dramatically in a very short space of time. He found it difficult to process information, holding a conversation became increasingly difficult as he lost his confidence to do things independently. Living amongst a close-knit family, this became challenging and upsetting for all of us to witness.
We lost Nanu, my Grand Uncle, in May 2020.
Above is a picture of my Grand Uncle
Even though his Alzheimer’s was quite advanced, we could still see how much he loved us all and enjoyed being in our presence and will always be missed."
Research organisations predict that by 2050 131 million people will be suffering from dementia, a population over twice the size of Britain. For Alzheimer's disease specifically, the last symptomatic drug approved was in 2003, 17 years ago.
Our Campaign
My friends and I decided that we wanted to raise money to fund research into dementia, which would enable researchers to gain a greater insight into the causes and risk factors associated with the disease. Hopefully, this research will lead to the development of a disease-modifying treatment and perhaps a cure in the near future.
The Importance of Funding Research - click image below to watch:
The charity I've chosen to raise money for is ‘Alzheimer’s Research UK'. They fund research into the many different types of dementia namely; Alzheimer’s disease, vascular dementia, dementia with Lewy bodies, Young-onset dementia, frontotemporal dementia and Parkinson's Disease Dementia.
By donating through JustGiving there are no platform fees meaning more proceeds go directly to Alzheimer’s Research UK, than other online donation platforms. These invaluable donations will help fund; clinical trials, UK based initiative programmes which, research areas such as; the genetics underpinning dementia allowing scientists to understand the risk factors involved with the disease. ARUK also help fund research at Cambridge University, UCL and Manchester University. They also recently funded a research project which allowed scientists to use state-of-the-art stem cell techniques to study Alzheimer’s disease in the laboratory. This transformational technology is now changing how scientists across the world can study diseases like Alzheimer’s and frontotemporal dementia, enabling the possibility for the development of new drugs to help treat the disease.
For Alzheimer's disease, for example, your donations would help scientists develop a greater understanding into the transport of proteins namely tau and amyloid ß, how they behave and go wrong sometimes leading to neurofibrillary tangles (damage to the neurones) and why they are unable to be removed by the microglia (the cleaner cells) of the brain.
To read more about some of the progress Alzheimer's Research UK has made, click on the link below:
https://www.alzheimersresearchuk.org/research/about-our-research/our-progress/
The Challenge
We decided that between us we’ll cycle the equivalent length of Britain, from John o’ Groats in Scotland to Land’s End in South West England, approximately 874 miles, it’s a challenging feat that will require a great deal of resilience, but it will symbolise the sheer endurance people with dementia have as they live with increasingly severe symptoms.
By cycling this distance, we hope to raise awareness about the types and causes of dementia as well as the importance of funding research into dementia treatment. We also hope to raise money through this JustGiving donation page where all of the donations go directly into funding dementia research via Alzheimer’s Research UK.
By donating to our campaign, you will help fund vital research into dementia that will, hopefully, one day enable improvements to the quality of life for people like my Nanni.
The Team
Credits
I want to give my sincere thanks to the team and all their efforts: Thomas, Aiyush and Tom and their families in support of this cause.
With special thanks to Dr Tournier.
With thanks to Alzheimer's Research UK (ARUK) for all of their support and guidance.
Thanks to all the family and friends for their help and to everyone that has supported this campaign.
Thanks Mayek
Helpful links to help understand Dementia:
https://www.alzheimersresearchuk.org/dementia-information/quick-guide-dementia/ - A simple explanation of what dementia is and the different types by Alzheimer's Research UK
https://www.bmj.com/content/367/bmj.l6217 - A clinical review by Elizabeth Joe, assistant professor of clinical neurology and John M Ringman, Helene and Lou Galen professor of clinical neurology on the current scientific situation with Alzheimer's disease.
https://www.youtube.com/watch?v=twG4mr6Jov0 - A Ted Talk by neuroscientist Lisa Genova. She shares the latest science investigating the disease and some promising research on what each of us can do in the interim to help reduce our risk of dementia.
