Last summer my Dad, Peter, aged 65, was diagnosed with Motor Neurone Disease (MND) after experiencing some changes with his arm strength and his speech and swallowing. It came as a devastating blow to us all, for my dad to be faced with this life shortening disease. 

Ever the pragmatic and forward thinking man, it took him only a week to record every syllable of his voice into a speech support app to prepare for when talking gradually becomes more challenging. Within a month my parents had planned out several large modifications to their house, my childhood home, to make living with Motor Neurone Disease more tolerable; my Dad all the while focussed on making sure the changes were done tastefully and weren’t detrimental to “normal” life. One thing I know for sure about my Dad is the idea of his circumstance having a negative impact on the people who love him is unbearable, which makes the inevitable challenges of MND all the more cruel.

Motor neurone disease describes a group of diseases that affect the nerves (motor neurones) in the brain and spinal cord that tell your muscles what to do. Messages from the motor neurones gradually stop reaching the muscles. This leads the muscles to weaken, stiffen and waste. MND can affect how you walk, talk, eat, drink and breathe. However, MND affects everyone differently. Symptoms also progress at varying speeds, which makes the course of the disease difficult to predict.

MND is life-shortening and there is no cure. Although the disease will progress, symptoms can be managed to help achieve the best possible quality of life. Charities like MNDA make living with Motor Neurone Disease less challenging, by offering people affected by this disease the much needed support as well as researching into how the disease occurs and therefore potential cures for people who contract the disease in the future.

With Covid lockdown restrictions making life difficult for everyone, I wanted to do something from a distance to support a charity who are instrumental in supporting my parents, and also show my Dad I’m thinking of him every day, through rain sleet wind and snow, embracing a physical challenge which is a fraction of the challenge he faces now on a daily basis and with such dignity.

So I’ve committed to running a minimum of 1000km (620miles) in 2021 to raise awareness of Motor Neurone Disease and specifically to raise funding for the South Herts branch of the MND Association, who are helping support my Dad and my Mum through their challenging journey. That's the equivalent of London to the South of France, and it’s more running than I’ve ever committed to in one year!  Every wet, cold, hot, windy, slippy, sweaty kilometre will be with my Dad and my Mum in my mind, forever proud of their positive energy and their can-do attitude as my Dad lives with MND.

I'll post a monthly roundup of my progress here, and I'll be posting regular updates on Strava and Instagram:

- Strava @acharlienorth
- Instagram @alexandercharlie

Finally, I'm so proud of my dad who is spreading awareness of MND and sharing his journey to help people understand the mental and physical hurdles, and also that there is still a fulfilling life after an MND diagnosis. You can read more below at his website:

https://www.myneurodiary.com 

Thank you for your support!
ACx