Well, we thought we'd never get there and when we did, we almost didn't find the Walkers, but although we were late to arrive, I am proud to report that I stayed the course and walked my five miles - and even caught up with our fellow MND Association members, Gerry (pictured with Roch), his wife Pat and their daughter Clodagh, with her husband John. We finished the Walk together. So, been there, done that and have the (rather unflattering) tee shirt to prove it! I have been touched by the number of people willing to sponsor me and I am thrilled we managed to go along and support the local Group. So let the cash roll in People!
I enjoyed the walk a lot - I realised that it was hard for Roch to be there when he couldn't participate and I did offer to go along by myself, since I was the one who had looked for sponsorship, but he came along in the end. There will be stuff to process now.
In other news: back to King's College Hospital on Thursday. This will be interesting. It looks like we may not have an appointment with Professor Al-Chalabi, which is disappointing. However, the interim appointments Roch has attended at the West Middlesex Hospital with the local Neurologist have been pedestrian to say the least. He has not felt reassured and describes the experience as 'monitoring his decline'. Somehow, this is not our experience with Professor Al-Chalabi. We shall see. The appointment was brought forward by the Motor Neurone Clinic there, and this was a welcome development for us. We have had our own development and would like them to give us their professional opinion. While in Venice, Roch suddenly lost a degree of power in his right arm. He can't extend it as far as the left now, or lift it as high as before. It was so sudden we wondered if he had strained it in some way. But, hey, it's probably the monkey again.
Today Gerry was saying it's day by day - he wakes up not knowing how he'll be, whether he'll feel the same or if there'll be another change. It's the same for Roch. But Gerry was also keen to say that he adapts to the change, and finds some other way of doing things. (This is a man in a wheelchair, with a peg for feeding and who can barely form words- Go Gerry!). Roch can still lift pints with the right arm, all the way to his lips - and that's important, believe me. Let's get our priorities right.
I tend to agree with Roch on the hospital visits, a lot of hassle for a little chat where you tell them much more than they can tell you. I think initially I went hoping to be told that my rate of progression (strange using that word, but maybe less depressing than saying deterioration) was slow or at least slower than average. But 3 years down the road I can work it out myself. Well done for doing the walk, I was at Bushy Park myself today, tootled up there in my chair and stuck myself under a willow tree for an hour
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