21/07/2023 - 'My diagnosis' by David

I have some terrible news to tell I'm afraid. I have been diagnosed with Motor Neurone Disease. 

For the last three years I have experienced a bilateral ache in my groin that comes and goes and leg cramps at night and have been to my GP twice, had physio and been referred to a long covid clinic as that was what I was told that it probably was. As they were the only symptoms that I was having and with the knowledge that I had contracted Covid 19 in the first wave of April 2021, this diagnosis was entirely plausible. 

My running ability has deteriorated from being able to run a marathon before I contracted Covid, to just about being able to run a half marathon a year later, then struggling to finish a 10km race in April of this year.

You may remember I fell while out running in January. I was trying to train for Brighton Marathon as I had a place prior to Covid 19 pandemic and had deferred it twice. I was nearly home from a long run when I fell and a kind off-duty midwife picked me off the pavement and drove me to A&E. They initially thought it might be heart related and I spent two days in hospital on cardiac monitoring and had an echo, bloods and a treadmill test which were all fine. 

Alice had noticed twitches in my legs that I couldn't feel and in March, I noticed a slight foot drop on the left and the cramps had started in my hands too so I returned to my GP who agreed to send me for a Neurological assessment and I have recently had a brain and spine MRI,  and Electromyography tests which have unfortunately resulted in my diagnosis of MND. 

This is a rare condition with just 5,000 people affected in the UK at any time. The average life expectancy with MND is 2-5 years and my consultant thinks I am in the early stages so I am hoping that because I am otherwise fit and healthy, that I will have a very good life for some time yet, although it is degenerative and incurable. 

I can still run a 5k parkrun and my walking is unaffected although I can feel weakness in my legs so I just have to keep positive and see how it goes. This is the same illness that Professor Stephen Hawking had and there are also a number of high profile rugby players that are going through this journey also. Unfortunately I struggle to spell Theoretical Cosmology and I was shit at rugby so there is no real help there! 

I have told my family so this is the right time to tell all my friends of which I am blessed to have so many. I have always been a positive person and I am determined to enjoy all that life has to offer while I can.

It was so hard having to tell my mum, my daughters and my brother and sister but I am so grateful for their love and support and my wife and best friend Alice, has been amazing and I will need her to be at my side all the way. I have been referred for a research trial which means I will be able to contribute towards finding a treatment for this horrible disease. 

Life goes on as normal for the time being and I look forward to traveling, going to gigs and football matches, meeting up with family and friends and doing a few more dj sets! 

If you would like to know more about this condition, here is the link https://www.mndassociation.org/about-mnd/mnd-explained/what-is-mnd (I have ALS).

Love to you all x

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