This month brought with it a number of anniversaries. It is a whole year since I said farewell to Sussex and moved full time to Nottingham. It is two years since my MND diagnosis was confirmed, and over 3½ years since the onset of symptoms. My MND ‘bible’ tells me the survival rate after this period is only 30%, so I’m doing well. Covid19/coronavirus permitting, I could still be boring you with my blogs for quite some time yet! I also celebrated my 68th birthday this month, probably the strangest ever, in total lock-down, not seeing anyone but Doreen. I did though, receive some lovely birthday cards and spoke to friends and family by telephone/ video chat.
As mentioned in previous blogs, getting up out of the wheelchair has been getting progressively harder for some time. I now need a ‘bit of a boost’ from Doreen more often than not. The good news this month is that my electric wheelchair is to be replaced with one incorporating a rising seat to help me reach a standing position unaided. That facility is not provided by the NHS but the MND Association has agreed to fund the extra cost for MND patients that need it. Amazing!
A ‘first’ for me, early this month, was a visit to the local hospice. Leslie the OT and Fiona the Physio from NHS Community Neurology have been encouraging me to try out their day centre, providing a change of scene for me and a break for Doreen. The hospice is non-residential but provides a ‘hospice at home’ service for house-bound patients. For day visitors in wheelchairs, they have a number of adapted minibuses with tail lifts so they can provide a home pick-up and drop-off service. What a wonderfully kind and caring group of people make up the hospice’s staff and volunteers.
While at the hospice, Leslie and Fiona came to see me. The hospice has a home hoist which they wanted me to try out, to help me get up out of my wheelchair. Leslie demonstrated it with Fiona operating the controls. They advised adopting the same posture used while skiing. I’ve only skied once. When we lived in Chile, we had a family weekend at the Andean ski resort close to Santiago. On the Saturday, we attended beginners’ classes on the nursery slopes. That was enough to convince Doreen, and our daughter Fiona, that skiing wasn’t for them, so on Sunday, only our son, Adam, and I took to the ski lift to reach the main slope.
Adam, 14 years old and very athletic, sped off, while I contemplated the slope. What was I doing here, starting to ski at 44 years of age, when, even in my youth, I’d struggled to maintain balance on skates? Gingerly, I set off, began to pick up speed, and promptly fell over! Hauling myself upright I tried again. Another 10-15 yards and, crash! Down again. And so it went on, falling and getting up, as 5-year old tots on mini-skis zoomed past. An hour later I finally reached the bottom, and crossed to the ski lift to do it all again; and then again before, exhausted and demoralised, we headed home. Afterwards, just to complete my humiliation, Adam admitted to playing a game, seeing how many times he could go up and down in the time it took me to do it once!!
When Leslie and Fiona heard of my association between skiing and falling over, they hastily changed the example to water skiing. That was fine. I’ve never water skied but could envisage the physical movements needed. As I glided upwards on the hoist, I even swung gently from side to side, imagining myself on a slalom course. Piece of cake!
Leslie has procured a home hoist for us as a back-up in case I just can’t get up. At least, now, I don’t have to worry about being stuck in the wheelchair all night, and/or desperate to go to the toilet!!