JB Progress

My first manually propelled wheelchair was delivered today, courtesy of the Wheelchair Clinic at the Royal Berkshire Hospital. It is a Medium Active wheelchair, the Invercare Action 4 NG.  Nathan, who delivered it, showed me all the controls and how to take it to bits and fold it up. It seems a very nice machine.  It's custom made to fit me.

Safety trials for treatment of the faulty C9orf72 gene are due to start in the last quarter of this year both in the USA and UK.  However, I learned at the John Radcliffe yesterday that these trials are likely to be delayed well into next year for bureaucratic reasons. Treatment will be an intrathecal injection into the spine, so that the drug gets into the cerebro-spinal fluid that bathes the brain. The trial is likely to be double blind, so one could get a placebo injected. A single shot would last 6 months or more. The people at the John Radcliffe have no control over who is selected to take part in the trial.  The point of the trial, as the title suggests, is to provide assurance that the treatment is indeed a safe one. They told me that they are pretty sure that it will be safe.  From my point of view, I place little hope that this treatment will arrive in time to help me. I might not be selected for the trial and if I was, I might be given the placebo. Even if all that we

Work is now under way around the house to install paving and ramps around the house to make the exterior wheelchair friendly.

I have added labels to my posts, to make it easier to read about a subject area, rather than having to comb through all the posts.  If you click Labels on the left, a list of labels will appear, which you can select. Click Show More at the foot of the list of labels, as it doesn't otherwise show all the labels.

Peter Scott-Morgan has had his triple ostomy, which was successful. He is now making a film with Sugar Films to be shown on Channel 4 later this year. Here is what he has to say. His video is well worth watching. Just click on the Vimeo link below. REALLY EXCITING NEWS! A major TV broadcaster has commissioned a primetime documentary of my search for Hi-Tech to help  # plwMND  THRIVE when we’re Locked In! It's being shot by award-winning Sugar Films (contact@sugarfilms.co.uk). They're now signing up companies to help, so PLEASE watch my video explanation on  https://vimeo.com/283453798  and then pass it to any SERIOUS contenders - or people who might be able to get us INTO the MOST serious contenders. We need the BEST!!! And I guess it goes without saying, if anyone happens to be friends of friends with the likes of Elon Musk, now would be an incredibly good time to get in touch...

Sandie and I did a cruise to Norway at the beginning of July in the P&O Arcadia, 2,000 passengers and 800 crew.  It was our first such cruise and we both thoroughly enjoyed it. Most passengers were able-bodied, but there were enough with mobility problems of one sort or another so that I wasn't in the least unusual, nor would be in the future.  We sailed from Southampton and visited first Stavanger, then minor ports at the head of the two longest fjords, finishing at Haugesund before returning to Southampton.