In March 2018 my mum was diagnosed with Motor Neurone Disease (MND) at the age of 63 years.This incredibly cruel disease is life-limiting, and is currently incurable and untreatable.
Because of MND, my mum can no longer walk. She can’t stand up. She has lost the use of her right arm and hand. Her left arm and hand are very weak. She is losing her voice. In fact, we have commenced ‘voice banking’ to create a voice library for her. Mum is finding it increasingly difficult to swallow and often chokes when she eats. We often feed her because she can no longer easily feed herself. She uses a straw to drink a cup of tea. In the next few months mum will have an operation to have a PEG fitted to feed her directly into her stomach. She can’t sleep flat in bed, so needs a profiling hospital type bed. Her weak diaphragm means she has to use a ventilator and a breathing mask every night. MND has done this to her.
Just for a moment, think what it would be like to not be able to lift a glass to drink, or a knife and fork to eat, or a hair brush to style your hair. Imagine not being able to shower or dress yourself, or put your favourite necklace or make-up on. And hobbies - walking on a sunny day, running on a crisp morning, cycling on a spring afternoon, mooching around the shops on a Saturday - are no more. Being reliant on people to cook, clean, turn on the tv or turn the page of a book for you. This is a reality for my mum. MND has taken hold of her and she is rapidly deteriorating before our eyes... MND is trying to break us - but we’re not going down without one hell of a fight.
The MND Association (MNDA) have been incredibly supportive to my mum and my family during this heartbreakingly difficult time with help, advice, resources, funding and equipment including; an electric wheel chair, a riser-recliner armchair, a stair lift, a shower chair, a toiler raiser as well as a host of other mobility aids. However, as this awful disease progresses, some of these things are becoming redundant. We have recently received a mechanical hoist at home to enable moving mum around safely, and we’ve been introduced to igaze technology as a method of communication for when she can no longer speak.
In April this year I will be running my first ever marathon, arguably the biggest in the world - The London Marathon 2019 - to raise funds for the MND Association so that they can continue to offer their help to other people and, crucially, to facilitate research to find a cure for this hideous disease.
To you MND - words cannot describe how I loathe you with every single fibre of my being. We are fighting for a world free from MND - and one day we WILL beat you.
Thank you for taking the time to read my story and for your support. From the bottom of our hearts, me and my mum are forever thankful.
Funds raised will go to the national office of the MND Association to fund research, care and campaigning and also the MND Association Northampton branch to be used locally.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.
Sarah Gyde's London Marathon 2019 page
Raising money for Motor Neurone Disease Association because my mum was diagnosed with MND in March 2018