JB Progress

The MND Unit at the John Radcliffe Hospital have discovered that I have the commonest genetic case of MND, namely an expansion in the gene C9orf72. This is dominantly inherited, so likely to have come from my mother. They say that there is a huge amount of work focused on this particular cause of MND, and that they are expecting the first trials of targeted ant-gene therapy later this year.  They will discuss this and what it means for wider family members when I next visit them in August.

Two interesting appointments at the Royal Berkshire Hospital this week. The first was with a Neuro Physiotherapist, who put me through my paces in terms of increasingly hard balance tests and walking as fast as I could. She gave me tips on improving my sense of balance and on making my jerky gait more even. She spotted that my drop foot has made me more prone to trips as I can't lift my right knee by much. Other folk with drop foot can compensate by lifting the affected leg higher than usual.  The second was with the Orthotics team, who gave me a more robust method of holding up my drop foot to stop it dragging. It is similar to the Chinese made one I bought on Amazon several months ago, which is wearing out. This one has a strong piece of elastic cord to hold the foot up and is better engineered. Pretty good of the NHS to give it to me free of charge.