JB Progress

Friday 22nd March 2019 marked one year since I was diagnosed with MND. We marked it with 3 days staying in Sidmouth. Here is a video of me rolling through the Byes, which run alongside the River Sid. Here is a selfie of Sandie and me: This blog entry also marks the point at which I started to use the wheelchair for indoor as well as outdoor use. An involuntary giving way of the knees in my bedroom late one evening has triggered this, as I found I was unable to rise from the floor by my own efforts and had to phone a strong neighbour to lift me on to the bed. The wheelchair is safer, as one cannot fall; and now faster than using a rollator. I can't afford to allow myself to slump to the ground if I cannot then pull myself back on to my feet. I started the past year walking without any supports; moving to using one, then two sticks. That period was followed by many months using rollators, which has only just ended.  

I visited the Oxford Centre for Human Brain Activity yesterday, for a whole day of being a research subject.  It involved three unusual and interesting machines. I've linked each title to Wikipedia, should you want to find out more. The first was  TMS . This only required me to sit still and be relaxed. Electrodes were attached to head and hands. A coil was held at a precise point on my head and I felt pulses that caused fingers to twitch slightly. Its purpose was to look at nerve conductance between motor cortex and hands. The second was  MEG .  This was more impressive, involving a sealed metal room, with a control desk outside with about half a dozen screens. They attached lots of electrodes to me with long wires, then slotted me into the machine which fitted like a helmet.  I had a simple task to do. The third was  MRI .  Their MRI machine has a magnet twice as powerful as the average NHS machines, so they are extra cautious about s...

As the left leg follows suit to the right one, I am now wearing ankle-foot orthotics on both feet to counteract foot drop. I estimate the left leg is running 6-9 months behind the right one in terms of losing function. A consequence of this is that I'm now using the manual wheelchair for all trips outside the house, it being much faster and more secure than using a rollator. This is made possible by having the Topper box on the car roof to hoist and deliver the wheelchair. I've now attended both Goring and Pangbourne choir rehearsals by wheelchair for the first time. However, I'll be unable to sing in the pending Pangbourne choir concert, as it involves clambering about on staging. I'm still using a rollator within the house and hope to do so for some months yet.

My ground works team have just completed a major enhancement to the the Mark 1 ramp that led to the car.  The new Mark 2 system consists of an area of decking, with three ramps leading off it: One to the drive, car and garage, One to the path round the side of the house, which leads to post box, dustbins and gate onto the road, One to the outhouse, with its freezer and storage. The decking has enough space for a table and chairs.   The advantages of this scheme are: It allows me to use the back door to exit the house in a wheelchair, mount the ramp to the car, load the chair into the Topper and drive away, The gradient of the ramp to the car is much reduced, as it springs from the decking rather than from the ground, as before. I can get to the outhouse and front gate in a wheelchair. Here is a video of me using it: Here are some photos:

The Reading and West Berkshire Branch of the MND Association publishes a regular newsletter. I have written an article for it, which you can read on page 5 of the newsletter. Just click the link below.  There's also an article by Sandie in it about raising money for the MNDA. MNDA Branch Newsletter

Yesterday I drove Sandie and myself to the Redbridge Park & Ride outside Oxford, using hand controls for accelerating and braking. I am getting better at using them, although still can only go slowly round sharp junctions and tight roundabouts. We parked in a disabled slot, then I lowered the wheelchair from the Topper, opened it up and popped in the cushion, a key component. I levered myself out of the car and got into it. Then made my way to the car's back door, where I took out arm rests and foot plates, inserting them where they belong. A push or so on the rings sent me towards the bus stand, where we found a waiting P&R bus. On seeing me, the driver put out his ramp and helped push me on board, where I found a wheelchair bay into which to go and put on brakes for the trip. We left the bus in the city centre, with the driver again lowering the bus and putting out the ramp. I exited without help. We made our way a short distance to a lift which took us in...

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 ...