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

Comments

Post a Comment

Popular posts from this blog

11/02/2024 - 'The highest of highs and the lowest of lows' by Alice

Image
Strap in for a rollercoaster - it's been a big, emotional and busy week.  'Monday Monday... so good to me'. Well, not really. I'm doing the blog this week and that's because David just couldn't face it and needs a week off. I'm sure our regular readers usually feel reassured that despite his disease, he's upbeat and positive but this week, started with him feeling down (and that's OK!). So was there a trigger to this low mood? Probably yes. And that was our check up with his neurologist at the hospital. We get a 30 minute appointment and as usual, we were joined by Clare, the MND care co-ordinator for the area. The consultant starts with the same question he asks every time - 'what's changed?' and we have deteriorarion to report. David's hands are becoming weaker and every day tasks are becoming harder (if not impossible). Not only that, his arms are failing him so his overall strength is weakening. He had been packing up his percus
Read more

18/02/2024 - 'My running days are finally over' by David

Image
In a week where both Alice and I really wanted to rest and relax, we unfortunately did neither. Alice is suffering from a bad back, and I was still recovering from my running and musical escapades last weekend, so the thought of sorting, boxing, and transporting to the new house wasn't something to look forward to. With the help of family, including Fin, who used all his lego building experience to help assemble units and desks, we have made a good start though. Unfortunately, my leg strength has deteriorated and on Monday I walked back from the new house to our old house on my own as Alice and Fin were busy assembling furniture and after only a few minutes of walking, I felt unstable on my feet, and I was lifting my left foot in a strange manner as I walked. Admittedly, I didn’t have my stick, or my shopping trolley, or the hand of a good woman to hold onto to steady me, but it was very disappointing and left me in a low mood. Amidst all the emotions and household possessions arou
Read more

26/11/2023 - 'What is MND and what does it feel like?' by David

Image
Recently, the blog has been about exciting travels, reunions, concerts, meals out and parties, and long may that continue as Alice and I make the most of my mobility and my time. This week though, I thought I would explain a little about motor meurone disease and describe how the daily life of someone living with MND actually feels.  I have spinal onset amyotrophic lateral sclerosis (ALS) MND, known as Lou Gehrig's disease in America, a painless but ultimately, terminal disease.  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. MND affects up to 5,000 adults in the UK at any one time. MND is very rare with only a 0.3% risk of getting it across a lifetime. It can affect adults of any age, but is more likely to affect people over 50. I am grateful that I don't have something like an inoperable cancer with all the painful treatments that are associated with such a horrible
Read more