In my last blog, I wrote about my intention to go to the local Motor Neurone Disease Association’s bi-monthly meeting in Turners Hill, and I expressed my fears about how I would react to meeting others with MND for the first time. My apprehension was increased by the fact that I had gone alone, as Doreen had to attend a family funeral in Northumberland
I needn’t have worried. What a wonderful group of people! I was given the warmest of possible welcomes and introduced to a whole host of people. Meeting two other HHGC members there, Ian Weatherstone and Mike Abbott, both part of the MNDA helpers group (Mike is branch treasurer), made me feel even more at home.
Did it upset me, seeing others whose MND is more advanced than mine, knowing that’s where I am heading? I thought it might, but it didn’t at all. Sitting talking to each other, you soon forget the disability, but the opportunity to share experiences, and to pick up tips from people who have already been where I am, was really helpful.
There were actually more carers there than people with MND, but living with MND is as much about them as those with the disease. They, too, need the support network and advice that MNDA can provide to help them with the challenge of caring for someone with ever increasing disabilities.
The over-riding feeling from the whole event was of caring cheerful optimism.
I have had two appointments, now, with Physiotherapy at the Princess Royal Hospital. The first one was essentially fact-finding by the physio, but since then I have been given an ankle support and a stick to help keep me walking, although it won’t get me round 18 holes! The stick is very helpful if I try to walk any distance but is also a useful ‘flag’ to others that I am not fully able. It also helps me feel that I’m not a fraud when I use a priority seat on a bus or train. To reduce the need for walking, I have applied for a blue badge, but that takes 10 weeks and I’m still waiting!
Everyone has their own rate of progression with MND, so not everyone’s journey is the same, and that rate remains constant throughout; there are no periods of remission, but neither are there any sudden accelerations or cliff edges. The health professionals seem to agree that my rate seems to be relatively slow. That’s not to compare me with the Stephen Hawking’s version of slow, but hopefully it means I’ll be around a bit longer than the average 2½ years from onset.
Slow progression means that, between these blogs, I can’t always report an obvious change in condition or capability. Walking, and tackling stairs, is slowly becoming more of an effort, but is still possible. The dexterity of my hands, especially the left, is also steadily deteriorating, but I tend only to notice the impact when I try to do something I haven’t done for a few weeks, and realise that it’s much more difficult than it was previously.
Last night, I struggled to open a screw-topped bottle of wine. Almost a disaster! But I managed it in the end so tragedy was averted. Fortunately, there are all sorts of aids available to help accomplish such essential day-to-day tasks. I mentioned previously my difficulty doing up my trouser waste bands. I have since acquired a tool specially designed to help do up buttons. It does work very well with shirt buttons but hasn’t helped a lot with the trousers. If you suddenly see me wearing trousers with an elasticated waist band, at least you’ll know it isn’t a fashion statement!