Charity of the Year 2020

The Tadcaster Harriers Charity of the Year for 2020 was submitted by Amanda Apperley

Amanda’s Submission on behalf of the Motor Neurone Disease Association (MNDA)

I was aware of Motor Neurone Disease having seen the impact it had on a family a few years ago but until you are really close to someone who has suffered at its hand it’s impossible to fully realise the devastation it can cause. Even though I had seen it I did not see the signs in my beloved mum, Christine. 

In hindsight we think that she kept them hidden until she could not anymore. At this point mum already had a diagnosis of Alzheimers from 2014 but this did not bother her, she would say ‘it’s just old age’ we laughed at all the changes in her life for example mum had always enjoyed a glass of red wine but now insisted that she had white! Things didn’t change that much until later in 2016 when she began with breathing problems and from then on she was in and out of hospital and trips to the GP with her breathing they labelled her with chronic obstructive pulmonary disease (COPD). Hence, every A&E visit was pointless as she was admitted, assessed and sent home with steroids or just plain sent home. By the time mum was diagnosed with MND in August 2017 she was already admitted to Respiratory Care Unit and very scared. 

They diagnosed her and sent her home with approximately 3 days to live! Mum battled, she battled hard and suffered so many set backs but she lasted another year. 

I say lasted because that was no way to live, having lost use of her legs, her voice and using none invasive ventilation is not living. It was not living for mum as we knew her. It all happened so fast! From really realising there was something seriously wrong, to when they started talking about palliative care it was fast. Too fast to register, so imagine having to try and register it with Alzheimer’s also!! Mum’s care really only kicked in when she was seen by a team purely funded by the MND Association. She got access to a better chair to sleep in; my mum couldn’t lay down as she just couldn’t breathe and once laying down, she didn’t have the strength to get up if her breathing was compromised. After leaving hospital in August 2017 till she passed away in September 2018 she must have been in a bed no more than 5 times, so she needed a comfy chair! 

The MNDA gave us access to a specialist nurse and she co-ordinated her care, providing aids and adaptations as the disease progressed through her body. The team at MNDA are still there for us now, I get phone calls, emails and even hugs when needed. Sadly, I know other people who are in need of support and are supported by the Association and this spurs me on more than ever. I really can not believe the absolute devastation Motor Neurone Disease brings. I can not believe how many people have told me that a family member also has MND. I can not believe that there isn’t a beneficial treatment and I can not believe there is NO CURE.  This charity has a fantastic helpline, can loan important equipment, give benefits advice, give grants, access to communication devises and has care centres and community services. I want to see it continue to succeed and continue in its endeavour to research for treatments and hopefully a CURE.

All of this has led me to fundraise for MNDA I have done some running since my first half marathon for them in March 2018, I have met some wonderful people. One day I had a crazy idea that I could run the LONDON MARATHON and fundraise for MNDA so I was trying to work out ways to maximise my fundraising when I realised I could apply for MNDA to be my running club’s Charity of the Year……..so here I am about to start my training for London 2020 with the backing of Tadcaster Harriers, a fantastic, friendly, inclusive and extremely supportive on so many levels running club who have seen me through my running journey since 2015 and the past few dark years. I couldn’t ask for more. Thank you all for having me. I mean that!       

AMANDA

More Information about the Motor Neurone Disease Association:

https://www.mndassociation.org/