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James Smith

Life is not much different since my official diagnosis. I just take one day at a time. It's not easy some days, especially with now having 3 kids, but I'm staying positive and feel that in itself is the best way to be.

Hi I’m James.

A married Dad of 3. I was once a keen runner. Completing about 30 miles each week rain or shine I was out running. I lost a lot of weight felt great and my times were getting quicker and quicker.

I was hooked.

I completed numerous running events from the London Landmarks Marathon, Bournemouth Half and a few 10k races while raising money for the MND Charities.

But one night I came home after a run and noticed consistent twitching in my left arm. Showing my wife she thought it was weird but we put it down to a normal twitch from either exercise or fatigue, bit like an eye twitch.

Roll on a few months, still running regularly and with the twitching still very consistent, I started to notice weakness in the arm.

Time to see a Doctor.

Having seen my local GP, they referred me onto the hospital where I saw a Neurologist. Lets call him Dr One. He examined me and made me an appointment to get an MRI and EMG test to see what the results came back with. MRI done which was fine, EMG done which was horrible. There were thick needles stuck into me all over my hands and arms which was a very uncomfortable feeling, but non the less it needed to be done.

As I waited for the results I did the stupid thing and ‘Googled’ my symptoms. Wrong move. With my Nan unfortunately loosing her life to MND and the results from Google all showing what I didn’t want to see I could only think the worst and desperately looking for mimicking alternatives.

With my anticipation for the test results looming and my mind full with worry and horror, I finally got my follow up appointment with Dr One.

At the appointment and tentatively waiting for the Dr to tell me my results, he said the MRI came back fine and the EMG came back inconclusive. Not the best news but not bad news either and was a little bit of a relief.

Dr One advised to give it 3 months and will see me again then. Then BOOM, the day after the appointment Covid struck the world and we were in Lockdown with this uncertainty hanging over me.

Six months later and out of Lockdown I was still experiencing arm twitching and weakness and noticed my other arm now twitching slightly.
Not hearing from Dr One 3 months later like he said, I thought best to call him to explain my new twitching I was experiencing. So while on the phone he refereed me straight away to get another EMG. this one was even more horrendous and more invasive than the first, hitting every nerve in the process.

Yet again I waited for the results.

What felt like a year with all that was going on in the world at the time, I finally got an appointment letter to see Dr One again with my second lot of EMG test results. However, he wanted to see me on Christmas Eve that year.

Not wanting to know the results nor able to make the appointment on Christmas Eve, I rescheduled for the January, which I’m so glad I did.

So the day I would rather forget came.

Still in lockdown and nervous as anything, I had to attend the appointment on my own due to Covid restrictions. Dr One examined me again. Mentioned he could see I had more weakness than the last time he saw me and proceeded to tell me my second lot of EMG results which gave him enough information to tell me the news I didn’t want to hear. ‘Unfortunately I believe you have Motor Neurones Disease.’

In a state of shock and Dr One having the bedside manner of a politician, he went onto say, ‘we try not to beat round the bush here and tell you straight.’
Still in shock, I was then told he will refer me to the main Neurologist in the department that specialises in MND for a second opinion, but added he was confident enough in his diagnosis that if he was wrong he would retire from his job.

Now I’m all for the NHS and feel lucky we have this available to us here in the UK but the way I was told this news was pretty shocking, especially when they were happy to tell me on Christmas Eve before I changed it.

So, on my own and not knowing how to feel or react to what I had just experienced while walking out of the hospital, I held back my emotions as men do, got into my car and just burst into tears knowing I had to tell my wife the news who was eagerly waiting on my call.

After taking the longest drive home I went straight upstairs so my kids didn’t see me upset and just fell apart in front of the wife for he first time in 20 years.

With emotions now all over the place and not knowing if I was actually diagnosed with a death sentence after Dr One wanting to refer me for a second opinion, my family and I now had to wait for the appointment to see the MND specialist at the hospital.

After receiving my devastating but uncertain news from Dr one, I now had to wait to see the specialist, let’s call him Doctor Two.

We were now in another lockdown as was the rest of the world, so I had to just get on with life as I was told I wouldn’t be able to see the specialist for around 6-12 months which would have brought me up to almost a whole year since my first consultation with Dr One.
I tried on many occasions to find out when my appointment would be to see Dr Two as the uncertainty living with what Dr One had told me was almost too much to live with but no luck.

My family and friends supported me and offered to pay to see private doctors to undergo more tests and a second opinion but even they had a waiting list so made sense to just be patient and wait.

On top of all this. My wife was around 20 weeks pregnant at the time with our third child. Luckily the excitement of baby number 3 and entertaining my other two children in lockdown kept me busy and my mind from wandering back into the dark hole about an official diagnosis of motor neurones disease potentially looming.

I desperately Googled alternative things that could be mimicking Motor Neurones Disease.

I came across things like Lymes disease, cramp fasciculations syndrome, benign monomelic amyotrophy (MMA), Peripheral Neuropathy, Hirayama disease (juvenile muscular atrophy of distal upper extremity) and benign fasciculation syndrome. Any of these would have been a better option than MND so noted them all down ready to show Dr Two.

Role on 2 months and after weekly calls and emails to try and get my appointment to see Dr Two, the letter finally came to see him. Luckily I was able to take my wife to this appointment.


Eagerly waiting, sweating and fidgeting in the waiting area my name is called. I was weighed, and confirmed the daily drinking I was partaking in throughout lockdown showed on the scales. 12 o’clock somewhere.

With nothing yet said from Dr Two we were escorted into his room where I met 4 other people from Occupational Therapists to Physiotherapists. I already knew then this was not going to be good news.

I had to be examined and showed off my sexy atrophied shoulder muscles and then sat back down with my wife.

Dr Two then confirmed he also thought it was Motor Neurones Disease and explained I have a very slow progressive version. However, uncertainty loomed again and I was then offered an appointed to see the Professor at Oxford Hospital and was advised to take the appointment for yet a 3rd opinion, so still not yet officially diagnosed.

While at this appointment Dr Two offered me a genetic test to see if I had 2 of the most common forms of MND called CO9ORF and SOD1. This would also show if I could pass it onto my kids. Another two months later, the results came back negative.

So yet again I waited for another appointment, this time to see the Professor.

As everything seemed to come in threes, 3 months later I received the appointment so off to Oxford we go with 3 weeks until my wife’s due date with baby no 3.

Feeling more fed up than anxious, we arrived at the appointment to see the Professor. Yet more examinations and within 10 mins my diagnosis was official and turned to my wife to see her in floods of tears.

I felt hopeless, but now relieved after all this time I finally knew what I had.

I needed to ask the, ‘how long have I got’ question. He said, ‘if I have a bucket list I should fulfil anything on it before I was 40,’ which was hard to comprehend.

However, I was yet again reassured that my version of MND was slow progressing which is not the norm in most cases. The Professor was also confident enough to say he feels I’m looking at at least 10 years if not decades and, in this time, hopefully receive treatment to help with slowing my progression.

Not great news but could have been a lot worse.

Following on from my family history with Motor Neurones disease, the Professor offered me a full genetic panel test which tested 30 plus genetic mutations they can test for. This would show other forms and help to know if mine was sporadic or hereditary. 6 months later and a lot of chasing, my results came back negative for all 30+ versions. It was sporadic.

Great news for my kids as it won’t be passed down to them, but for me not so good. They are currently closer to finding treatment for those with the most common genetic versions known.

I’m now under the care of an Occupational Therapist/MND Nurse and Dr Two where I see them as and when needed.

Life is not much different since my official diagnosis. I just take one day at a time. It’s not easy some days, especially with now having 3 kids, but I’m staying positive and feel that in itself is the best way to be.

I no longer can work as a Barber so I’m now concentrating on family life raising awareness for MND both on social media @diagnoseddad and as an ambassador for Challenging MND Charity.