In New York

In New York

Thursday, 7 October 2010

So, where are we now?

So, where are we now? Well, Kate is off at Exeter University and Bless her, she has fallen victim to 'Fresher's 'flu' but has settled in nicely and we are so proud of her! It's a wonderful opportunity, but it will be hard for her, and not just for the usual reasons. She knows she must expect to see changes in her Dad - there will be developments between visits and the decline will continue.
As for us, after various delays beyond our control (and some, I admit, within our control - really, none of us wants the building work to happen) we are All Systems Go for Stage 1 - the new kitchen. I find I can't get very excited about it, (for shame Deirdre, who doesn't want a brand new kitchen?) Thanks to Maura for working so hard to clear space in the shed for storage. She made herself ill (!) and of course, thanks to Chris. Well, frankly without Chris's plans we would never have got this far. Enter Tony, Roch's cousin, who is going to carry out the works. The kitchen is chosen (what a palaver) and to be delivered in the next two weeks. Stage 2 is the Wet Room and you're right, Steve, the Clos-o-mat is sooo expensive.

We have been to the quarterly meeting of the local MNDA group, a gathering which I find more helpful now than before, although it's never easy. They had a guest speaker there, a speech therapist with special experience in MND. She talked to us about communication aids and also explained how speech/swallowing is affected. I think I've mentioned that Roch feels there may be a slight deterioration - his voice may be getting softer and he is conscious of a droop at the sides of his mouth. I did ask her about this, and she says that's how it starts, as the muscles weaken. However, this is not obvious to others (Tom will tell you that Dad can still raise his voice when necessary!). Also, at the dentist the other day Roch found it difficult to breathe during the examination. He had to take breaks. Lung capacity seems less. So he'll have to have this tested and we'll see how it's changed. The walking is slow but the wheelchair has not been used since Somerset. Thank God he still drives. Only one fall - and that happened playing football in the hall of our house with Tom! Don't even get me started...he didn't hurt himself, but it was a bit of a struggle to get him to his feet again.

We went to Ikea last night and as we left, clutching our plans and quotation etc., the guy closing up stared at Roch, open-mouthed. We figured it was because Roch was using his rollator. The man's curiosity was so obvious it was comical. It could have been upsetting but we ended up having a good laugh. "He didn't say it out loud, but his eyes said, 'what the f*** is wrong with that guy?" said Roch. This would be the first question - we do know there is a second question, mercifully seldom asked but we guess in the minds of many, and recently posed by an acquaintance, so - "You should have said, "I've got bloody MND awright mate? - and yeah, we do still have sex!!" was my suggested rejoinder to the question in his eyes... So now you all know and you can stop wondering. (I realise this may be 'too much information' for some of you, just forget I ever mentioned it).

As for me - well, isn't the menopause a great thing? I don't know how much of the fatigue, headaches, low moods and cotton wool head is false menopause, real menopause or just mnd wife symptoms! Does it matter? Just two weeks and the fibroid comes out. Hopefully recovery will be swift and I will start to feel much better, as the effects of the hormone injections wear off. Then we'll find out if it's the real menopause...

Last but not least I record here the very sad death of my dear Auntie Maura. Roch and Tom managed beautifully in my absence as I raced home to Ireland for the funeral in Kilkenny. It was good to spend time with family and to have a chance to be part of a very lovely farewell to a remarkable and much loved lady. R.I.P.

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