JB Progress

I went for my introductory wheelchair clinic, expecting to be told that I wasn't doddery enough to need a wheelchair, so come back later. I was also expecting to find a large room full of battered wheelchairs and harassed staff. The reality could have hardly been more different. We got there half an hour early but still rang the bell just outside. Out came a chap who said "Mr Burton?" and ushered us into a normal room containing no kit. He asked me what my expectations were, so I briefly described my health status and my limited understanding of the wheelchair world and spoke about the three electric wheelchairs that MNDA had developed with manufacturers for people with MND. I also said I'd come this early, as recommended a month ago by Maureen from Adult Social Services. Much to my surprise, Paul said I'd come at exactly the right time, as it gave him time to supply equipment without rush.  He knew all about the MDNA wheelchairs and reeled off their names.

We drove to Southampton yesterday for a driving assessment at Wessex DriveAbility, a charity. We met Laura and Katy who looked after us for the 3 hours we were there. Laura is an ex driving instructor and Katy is an Occupational Therapist.  Katy checked my strength and ability to move limbs, particularly the left leg, in an organised way. That is the limb currently operating pedals. She also checked how quickly I could move it from one pedal to another, using small pedals with a PC application. I achieved around 0.77 seconds, which is regarded as acceptable. She said she could achieve around 0.5 seconds. They were horrified that I had driven a left hand accelerator car for the first time with only 10 minutes practice in a small car park before driving on public roads. They said it was much easier to transit from pedals to hand controls than it was from normal right-hand pedalling to left-hand. One has to spend a large proportion of time concentrating on feet, leaving less available

I informed DVLA of my diagnosis, as required by law. They have written back, having consulted with the Oxford MND Unit, and now require me to return my driving licence, to be replaced with a 3 year medical driving licence. It makes little practical difference. My application for an attendance allowance has been granted, surprisingly quickly. It's tax free and can be spent on whatever one wants. So a weekly small sum is arriving in my account. An Occupational Therapist has visited. I had to pay for her services, as NHS OTs seem to be in short supply. I now have her report and she has approved the plans for a redesigned bathroom. Although I have a Blue Badge application form, I haven't sent it off as I'm still able to walk several hundred metres without undue difficulty. Its time will come. 

The decision to see out MND at home has enabled me to get moving on the two major house modifications needed.   I placed an order for a through-floor lift at the end of last week. It will go into the only possible location, an outside corner of the sitting room. I also placed an order for a completely redesigned disabled bathroom yesterday. It will be wheelchair friendly and level throughout. Installation of both projects should start in a couple of months time. That should be in plenty of time for me to stay ahead of the disease, rather than fall behind.