JB Progress

It's been a wheelchair intensive week.  The power wheelchair, an Invercare TDX SP2 ,  was delivered on Tuesday afternoon, courtesy of the NHS. Laila's partner Michael made a temporary ramp for the back door over the weekend. The delivery driver walked the machine into the house using the ramp without stopping.  Once in, it took my sister and I nearly an hour to find the socket for plugging in the charger. We hunted through the user manual as well as the machine itself. Eventually I found it, hidden under the control panel. I put it through its paces, including raising the seat so that I was at normal head height and could reach the higher kitchen cupboards. Today Margie drove us to Aylesbury and Gerald Simonds. We met Nesad again who wheeled out the new Helio C2 manual wheelchair. He spent some time adjusting it to suit me and making it less tippy. This afternoon, we tackled two potential major potential gotchas: Would the Helio C2 fit in the ...

Here is an update on how my MND is progressing.  My right leg remains the most affected, but still supports me in standing and walking. It has very little lift ability. If lifted and then let go, it just flops downward with a thud. My left leg is slowly following suit, running about a year behind. I can still lift the left foot several inches from the ground. The leg has plenty of push ability, which is important in getting me from sitting to standing. However the left foot is getting close to becoming unable to switch reliably between brake and accelerator pedals, which is why the car is now equipped with hand controls. The rest of me remains OK, with body, arms, neck, breath capacity, ability to talk and swallow all normal. We saw Professor Kevin Talbot at the John Radcliffe today. He says that progression of MND from one leg to another is the best path and means that my MND is progressing more slowly than the average lifespan of 2-3 years. If it went from one leg to say ...