Oxford MND Unit 2

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 pot of urine. Some of this gets stored away indefinitely.   This will be repeated at intervals to look for trends. 

 I had a good chat with the specialist MND nurse, Rachael Marsden, who is making me think again about my forward care plans. Apparently most people opt to stay at home and buy in visiting or live-in nursing care. She reckoned I could live all year on a cruise ship and be cared for, for less money than a nursing home charges. 

Comments

  1. Unknown19 May 2018 at 15:03

    The food would be better and so would the view....

    ReplyDelete

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