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Laura's Virgin London Marathon 2015 page

Laura Sweet is raising money for The National Brain Appeal
78%
£5,709
raised of £3,000 target
Donations cannot currently be made to this page

Virgin London Marathon 2015 · 26 April 2015 ·

We raise funds for The National Hospital to improve the lives of neurology patients

Story

Thank you for visiting my Just Giving page for the London Marathon 2015.


I am delighted to have a place to run with The National Brain Appeal which is the charity dedicated to raising much needed funds for The National Hospital for Neurology and Neurosurgery in Queen Square, London.

The National is one of the world’s leading centres for the diagnosis, treatment and care of patients with a wide range of neurological disorders and neuromuscular conditions including dementia, multiple sclerosis, brain tumours, epilepsy, Parkinson’s disease, stroke, Prion disease, and head injury.


Why am I supporting The National Brain Appeal?


As many of you will know my dad, Bob, was diagnosed with behavioural variant Frontotemporal Dementia (also known as Pick's Disease) in November 2012, and therefore, of particular interest to me is the work the National Brain Appeal does for this poorly understood form of dementia for which there is currently no treatment or cure. 


Aside from raising money for this great cause, my other aim for taking part in this Marathon is to raise general awareness of Frontotemporal Dementia (FTD), which does not receive much press and is barely known about compared to other forms, such as Alzheimer's. Lots of people say that they know someone who has Alzheimer's so know what we are going through, but this is a totally different disease, although put in the same category of 'dementia' as they both involve the loss of brain cells.


I am also running this marathon in loving memory of my two grandmothers Phoebe Bridcut (1930-1992) and Rose Sweet (1921-1995), and Charlie's father, Angus Walker (1958-2010), who suffered from illnesses covered under the umbrella of the National Brain Appeal.


Any donation will be much appreciated...especially during these cold winter months of training!


If you would like to know a little more about FTD and how it has affected my family, please read on.



About bvFTD


FTD gradually and irreversibly destroys cells in parts of the frontal and temporal lobes, essential for decision-making, emotion, judgement and language. Unlike Alzheimer’s, it does not attack memory at first, but begins with silence, apathy or odd behaviour. It usually affects people at a younger age than Alzheimer's and can profoundly alter a person's character and social conduct.


Symptoms include:


  • Behaving inappropriately - disinhibition

  • Becoming less interested in things - apathy

  • Becoming less interested in people - loss of empathy

  • Becoming more obsessive or repetitive in behaviour

  • Changes in the types of food eaten, such as sweet foods


Usually the person will be unaware of the true extent of their problems and will lack insight into what is happening to them. People with frontotemporal dementia tend to gradually lose the ability to speak, eventually becoming mute. About a third to a half of cases are inherited and run in families.


To put some of these in context I did my APC surveying qualification over a year ago and at the time I know dad didn't really understand what I was doing and why I was rather stressed out the night before the exam! Similarly he knows I am running the marathon but won't understand the cause. My sister, Claire, gave me a good example today - she just missed out on getting her 'dream job' at the last of many interviews and dad said "oh poor you, right I'm off for a walk"!


One of the symptoms that my mum, Angela, finds hard are his eating habits! Dad had a heart bypass 20 years ago and has since been very in to running and eating extremely healthy foods. Mum is a cardiac rehab physiotherapist, so as you can imagine, meals in the Sweet family consist only of vegetables! For dad this health drive has long since gone out the window, which mum finds annoying; she goes to so much effort to make a delicious healthy meal to which dad turns up his nose and says he 'couldn't possibly' eat more than a few mouthfuls. Half an hour later you will hear a sound in the kitchen and find dad gorging on cakes, biscuits, crunchy nut cornflakes, you name it!!


In general his concentration has completely gone - he is unable to read newspaper articles or follow tv programmes and is very distracted. The only tv programme he likes...for some odd reason...is Miranda, which he is completely obsessed with and will often watch at least 3 episodes a day!


I know mum finds social situations tricky as at parties he often interrupts people and does not always act appropriately, with almost childlike behaviour. We find that we always have to have one ear on the conversation he is having in case you need to rush over to the person afterwards and apologise for any accidental insult or insensitive remark he may have made!


It has been quite a struggle for Claire and myself watching him go from a really inspiring father who constantly taught me little facts and who loved work, even writing a book on commercial property, which is the industry into which I have gone, to someone who isn't really interested in what I am doing and I realise I am treating like a child.


Unlike others who are faced with this illness, we are very fortunate to have a caring network of friends who are helping mum, as there are very few facilities to deal with younger people with dementia and often little respite for the carer. Those of you who take dad on dog walks with Evie while mum is working; take dad on holiday to give mum a break; and take him for day trips to ease his boredom are all greatly appreciated, so thank you!


My family have been trying to get involved with the FTD community as much as possible - mum has been helping other spouses of people with bvFTD to come to terms with it and discuss everyday issues, and dad is currently on a clinical trial for a drug that aims to inhibit the abnormal build up of tau protein that causes the loss of brain cells. As a Physiology graduate, I love the science part...do let me know if you are interested as I have written a whole page on the genes and the proteins involved...hopefully in lay terms...and would love to share it!


For any further info, please contact me, and thanks once again for taking the time to read this and for any donations you make.


Laura

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Donation summary

Total
£5,708.16
+ £1,133.50 Gift Aid
Online
£4,898.16
Offline
£810.00

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