In New York

In New York

Monday, 30 August 2010

Reasons to be Cheerful

He was out in the garden today, rescuing a field mouse from Oscar, the Killer Cat. I watched as he knelt down by our birch tree, where the mouse had taken refuge under a bucket (don't ask me why the bucket's there - it's filled with stones and bits of pottery). As the terrified rodent escaped to safety (with Oscar watching balefully from inside the house), Roch tried to stand up. I waited for a moment to see if he managed alone; then went out to offer assistance. I found it difficult. He did stand up with my help but there was a moment where I wasn't sure we'd do it. That depressed him, not being able to stand up alone. He says he did his ALS functional rating scale yesterday and he's down to 30 points now. I think I might have mentioned it before - it measures how the person is functioning in different areas of day to day life using sets of questions 1-4 in each area. As time goes on, the person will be able to do less and less and the points rating will fall. Roch says the next level takes him into dependence mode and there's no doubt, things are changing. I noticed last night he had trouble turning himself over in bed, that's a first. He's getting more self conscious about eating, too. He says soon someone will have to cut up his food for him. He says he's dribbling but I can't say I've noticed that. He tells me that people are beginning to say they can't understand him sometimes when he speaks. Now that's not something I've noticed at all. I do think his voice may be softer tho'. Is that part of it? I don't know. He is scared of the future and so am I. It's hard to take comfort from the fact that there is still so much that he can do. As he said today, in an effort to be cheerful - 'What can I do today? Well, I can still drink a coffee without a straw. So let's do that then.'

Not to go over old ground but it really doesn't seem fair, does it? We are twenty years married tomorrow. I don't know how many years we have left together, and please don't tell me 'No couple does.' Yes I know that but don't try to tell me this is the same.

It's not always been easy but something tells me it's going to be a lot more challenging as time goes on. I think I'm doing ok so far, but I know I haven't been tested yet.

'Lord, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.'

1 comment:

  1. glad you're back blogging again. Progression is difficult to deal with but you do adjust. We tend to notice things long before they become evident to others, I noticed vocal changes back in 2007 but nobody else did for another year. Keep your heads up, email me if you need any help