JB Progress

After a month of investigation and thought, we have decided to abandon the idea of renting a flat at the Thamesfield Nursing Home and to opt for a home-based care solution instead. It has been uncomfortable holding both options in play for so long, so we are relieved to be able to now to focus on just one of them. There have been many factors to take into account, with both solutions having strengths and weaknesses.

On Friday 25th May Grahame, a local choir member, kindly took me for a day sail on his 49 foot cutter, Sentosa, a beautiful boat. He drove me to her motoring in Haslar Marina, Gosport in his 5 litre open top Jaguar. Getting aboard and trying to move around the boat brought home just how weak my legs have become. I was fine, sitting or standing behind the wheel, but any further movement needed a lot of care. Going below down a steep companionway ladder looked out of the question, so remained unattempted. Thankfully it was a fine day with hardly any wind, so we motored over to Cowes for lunch and back. It was an enjoyable day and lovely to be out on the water. 

A busy and productive session at the John Radcliffe Hospital yesterday.  I saw Professor Martin Turner who, along with Professor Kevin Talbot, runs the MND Unit. We talked mostly about genetics and implications. The results of the blood test initiated last time have yet to arrive, in terms of identifying the faulty gene. We also spoke about implications for my five siblings and their descendants and he checked up my current condition. He was optimistic about there being a cure for later generations. He said that I should not assume that my progress will be as rapid as my mother's nor should I assume that I will lose as many abilities as she did.  I formally joined the two major research studies going on, one on Biomarkers and on one Genetics.  I met three researchers, led by Dr Emily Feneberg from Germany. The consequences of joining were giving nearly a pint of blood in 10 ampoules, a lumbar puncture to give 10ml of cerebro-spinal fluid and a po...

Peter Scott-Morgan is a robotics scientist who contracted MND in his late fifties. He has used this as an opportunity to conduct experiments on himself with the aim of thriving on the condition. He calls it his Radical DisABILITY Project. Its slogan is Break the Rules.  Some of his ideas on pre-emptive surgery are pretty extreme.  I admire his attitude though. Here is his website:  http://www.scott-morgan.com/ There was an article in The Times about him a couple of months ago. If you are a subscriber you can read it here:  https://www.thetimes.co.uk/my-articles/spinal-column-melanie-reid-089mdwwdr

Our good friends Ginty and Elwyn and her son Henry have come up up with a radical and informed suggestion for my future care. Ginty comes from a medical family and Henry is a doctor himself. The suggestion was to rent a retirement flat at Thamesfield nursing home in Henley-on-Thames. The flat comes with nursing support as needed and would be a stepping stone to the 12 bed nursing home when needed. I rang Thamesfield for a viewing immediately. We visited the place on Wednesday 2nd May and spent 3 hours there.  Most of the worries we had thought up the previous day melted away as we met nursing managers and other staff. Both the public spaces and the flat itself were charming. The flat has been empty for 18 months, which is why the agents were offering it alone for rent. Nine other available flats are only for outright sale. Having consulted family and my financial adviser and gained full support from Sandie, I put in an offer to rent on Tuesday 8th May. ...

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 be...

It is possible that I have inherited MND from my mother, who had it 30 years ago.  If that proves to be the case, this has implications for my five younger siblings. Research has discovered 70% of the faulty genes that cause MND. This link is to a helpful article on the subject. The article contains links to related information sheets, including one on genetic testing. https://www.mndassociation.org/research/causes-of-mnd/inherited-mnd/ I hope to become involved in the research being done by the MND Unit in the John Radcliffe Hospital and it is possible that they may be able to identify the faulty gene that I may have inherited.