Portrait no.9

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9 of 26 Hilary Rowberry Hilary Rowberry was living with a slowly developing ALS variant of MND and working as a branch MND Association volunteer when we interviewed her in October 2015. She sadly died after a stroke on June 9th 2017. She told us she had not heard of motor neurone disease before she was diagnosed and felt that she should have done because she worked as a nurse for forty years. She was amazed at how varied the symptoms of MND can be. “I just say that the brains not connected with the muscles and the muscles have become weak in my legs – in my case in my legs – but that’s me. There was another lady near here who’s one arm went completely and there are people who look perfectly well up and about but they have no voice. I find this quite staggering – the different ways it affects people. I’ve been to a couple of the big MND Association meetings and you meet all sorts of different people with MND. Some are quite obvious as they’re in neurological wheelchairs and others are walking around looking like normal and then you notice they have a device that helps them communicate with you because MND has taken away their voice.” https://www.justgiving.com/fundraising/26miles4mnd #MND #ALS #running #marathon #Tallinn #motorneuronedisease

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Portrait no.5

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5 of 26. Professor Martin Turner. Professor Martin Turner is a consultant neurologist based at Oxford University and is researching MND Biomarkers for use in drug trials. We interviewed him in September 2015. "The closest thing is Sherlock Holmes – when all the letters are dropping down in front of his vision and he’s assimilating masses of information just by looking at someone – that’s exactly what most neurologists do. We can assimilate huge amounts of information just watching someone get up from a chair, come into the room, how they introduce themselves. And that’s one of the massive draws of neurology because then you listen to the story. As a consultant 95% of the time, by the time you’ve heard the story you know the diagnosis. Then you examine the patient to confirm your thoughts and that examination in many ways certainly in MND is far more important than any test. In my research the buzz word is BIOMARKER – a biological marker of the disease activity. I’m looking for markers at the system level and that’s using very, very high resolution scans of the brain which both look at the structure of the brain and the individual nerve tracts and how they function – the individual nerve impulses that are being fired between these tracts – and looking at how that changes over time. If I can measure damage to tracts and show that they’re not getting worse or perhaps something that the nerve cells are releasing into the spinal fluid or the blood and we have some of these markers to measure and we can show that these levels have changed, we know that that drug (or we think) it might be working. I’ve never been more optimistic about better treatments for MND ever in my career. There’s more going on now than there ever has been. When I first started fifteen years ago it seemed intractable and now it seems absolutely practical, it’s just a question of when and not if." #mnd #ALS #running #tallinnmarathon www.justgiving.com/fundraising/26miles4mnd

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