Living with Motor Neurone Disease

Danny Fudge-Harman of Key Drummond speaks out about his experience.

Note to reader: This was an incredibly heartbreaking piece to write. What I’ve since learnt of those suffering with this cruel disease has opened my eyes to something most of us will never have to think about. Despite this, I think that the most astonishing part of this interview was Danny’s outlook. His ability to remain cool, calm and positive throughout our talk (unlike myself) was a testament to his bravery. By the time our interview concluded, it was evident that I was in the presence of an incredibly selfless man, one hoping to make a difference and leave a lasting legacy. Danny is a beacon of hope, not just for those suffering MND, but to all of us. Whatever hardships we might be enduring, his story encourages us to implore some perspective in our lives and to take stock of what truly matters..

Ok, This has taken me over a year to post, something I wish wasn’t happening but feel as though it’s time to share, so here goes. We all think we are immortal and think ‘it won’t happen to me’. Three years ago that was me; beautiful wife, beautiful children and a great life, all was good until I started to suffer from a disease that can only be described as a silent killer, Motor Neurone Disease. A horrible, degenerative disease that eats away at your muscles until such as you can no longer function. This is a terminal disease, no cure, no second chances […] My life will physically become difficult and my time shortened, but like most things I will never give up and will never give in. I hope that some day (really soon would be helpful) a cure will be found but in the meantime we carry on… 
Extract from danny’s facebook post

Danny held onto this message for over a year, editing it almost daily. Returning to it as a kind of outlet for all of the things he wanted to say. It sat in the notes on his phone until he decided to finally post it on his personal Facebook page, just three weeks ago.

I read this status for the first time at the start of our interview and I can’t even begin to imagine what was going through Danny’s mind when he finally decided to post this. The pressure of conveying such a difficult subject, to people who had no idea what he had been carrying around with him for almost three years, must have been torturous.

There are so many people out there, myself included, who don’t know enough about Motor Neurone Disease, can you explain it to us?
MND is a progressive neurodegenerative disease that attacks the upper and lower motor neurons. Degeneration of the motor neurons leads to weakness and wasting of muscles, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing. The muscles first affected tend to be those in the hands (which is where mine had started), feet and mouth, dependent on which type of the disease you are diagnosed with.

The effects of MND can vary enormously from person to person, for instance mine is relevantly slow, but from the presenting symptoms, and the rate and pattern of the disease progression, to the length of survival time after diagnosis life expectancy is from two to five years from onset of symptoms.

Are there everyday things that are more difficult?
The disease has wasted the muscle in both my arms which makes the easiest of tasks impossible. Things we all take for granted like, writing, tying shoe laces and turning door keys, which is somewhat of a problem being an estate agent!

Facing life with a terminal illness is hard but that is the hand that I have been dealt. I have learnt so much about myself since my diagnosis mentally, emotionally and physically. I am so lucky to have the support of my beautiful wife, children and family, the fantastic Key Drummond team and amazing friends who have gone above and beyond to help and support me.

What are you’re intentions for the foundation?
With the support network I have it is my intension to set up a foundation, not just to help me, but for others locally who are suffering from MND. This idea is in its early stages but something that I feel very passionately about, the MNDA is the only national registered charity, which does an incredible job nationwide, but I would like to help more people locally. I lost a colleague and very good friend a few years ago through MND and know of other people locally who have this terrible disease who could benefit both financially and emotionally from this foundation. I intend to start raising the money through Key Drummond of which I am a Director. A small proportion of all commissions will go into the foundation which will then be utilised accordingly. I also intend to raise money via fundraising and other events. Some people think I’m mad and that I should just concentrate on me and my family and not add to my already stressful situation, but if I can help others as well as myself, then it will make it all worthwhile.

The way you speak about your family is lovely, I take it they are your biggest motivators?
My wife Helen and our families have been amazing, it’s obviously difficult with the children but they know that daddy’s arms are bad. My family means everything to me, and the harder I fight this disease, the more time I get to spend with them.


Current Fundraising for Danny and MNDA.
My niece, Daisy Fudge(pictured above left with Danny Fudge-Harman) has just completed the Silverstone half marathon which was just incredible raising in excess of £5000 for the mnda association.


Gary Fisher, managing director of GF Electrical(pictured above right with Danny Fudge-Harman) has set his sights on completing ‘The Oner’ on Saturday April 8, a self-proclaimed ‘brutal event’ to raise funds for the Motor Neuron Disease Association. Gary was inspired to push himself to the limits and out of his comfort zone, to raise awareness for the charity when he heard about my diagnosis. Gary commented: “I like a challenge and I’ve completed a number of triathlons and extreme events over the years, but on hearing of Danny’s diagnosis it knocked me for six – so I decided to put my fitness and midlife crisis to good use and raise as much awareness and funds as possible for the charity.” Please help and support Gary by donating to

We will be running regular updates on Danny and Key Drummond’s efforts towards setting up the foundation, watch this space.

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