Oxford MND Unit 1
A productive afternoon at the John Radcliffe in Oxford, with Sandie. I saw Professor Kevin Talbot, one of the two professors that run the Nuffield Department of Clinical Neurosciences, the other being Martin Turner. After a short examination he was clear that I had the ALS variant of MND and that both upper and lower motor neurones were affected. He will give me a written and unequivocal diagnosis. At my request, he will also give me a referral to the Occupational Therapist at the Royal Berks, that being the most urgent need to enable house modifications to be got under way.
I asked him how he knew about both upper and lower motor neurones being affected and he said it was because my toes curled upward when he drew a stick along the sole!
My progress is likely to be similar to my mother's, but with differences that can't be predicted.
We talked a lot about the research he and the unit are doing. They have discovered many more defective genes. I have fully signed up to being involved in their research programmer and gave some blood so that they can look for the three most common defective genes. If none are found, they'll progress to the next few and so on.
He is hot on the trail of a cure for MND that could stop the disease in its tracks, involving gene editing and splicing. I said it sounded unlikely to help me, but that it could possibly help my siblings and their descendants. He agreed, but said that he was planning to start trials next year in which I might be involved.
After seeing Kevin Talbot, I was introduced to Rachel Marsden, who is a specialist MND nurse and is to be my nurse. She seems to be a gem and gave me all sorts of useful information, including a comprehensive pack of contacts and advice. She promised to give me rapid answers to any question or problem I might have. So I feel properly plugged in.
I was exhorted to eat 10% more food to slow down weight loss. The extra food should be primarily fat (rather than protein or carbohydrate). So lots of cream, butter, cheese, chocolate and so on. I reckon some people would kill to get such dietary advice!
I asked him how he knew about both upper and lower motor neurones being affected and he said it was because my toes curled upward when he drew a stick along the sole!
My progress is likely to be similar to my mother's, but with differences that can't be predicted.
We talked a lot about the research he and the unit are doing. They have discovered many more defective genes. I have fully signed up to being involved in their research programmer and gave some blood so that they can look for the three most common defective genes. If none are found, they'll progress to the next few and so on.
He is hot on the trail of a cure for MND that could stop the disease in its tracks, involving gene editing and splicing. I said it sounded unlikely to help me, but that it could possibly help my siblings and their descendants. He agreed, but said that he was planning to start trials next year in which I might be involved.
After seeing Kevin Talbot, I was introduced to Rachel Marsden, who is a specialist MND nurse and is to be my nurse. She seems to be a gem and gave me all sorts of useful information, including a comprehensive pack of contacts and advice. She promised to give me rapid answers to any question or problem I might have. So I feel properly plugged in.
I was exhorted to eat 10% more food to slow down weight loss. The extra food should be primarily fat (rather than protein or carbohydrate). So lots of cream, butter, cheese, chocolate and so on. I reckon some people would kill to get such dietary advice!
Comments
Post a Comment