In New York

In New York

Monday, 7 February 2011

Cars and the Monkey or 'Every Which way but the way you want it to be'

Well, we've got the Sky guy in today. He was supposed to come between 8am-1pm but he didn't show up until 3pm. Cable everywhere as of course the new downstairs arrangements mean the main TV will be wall mounted in the central part of the house. The dish isn't too bad, but it's right outside the front door, so not exactly discreet. We'll have Sky in the new downstairs bedroom, too. Gradually things are getting organised now. We are waiting for the new sofa and a proper chair for Roch - I have to think carefully about where to arrange the new furniture so that there's plenty of room for turning in the wheelchair.

When I got home yesterday from evening Mass I had forgotten my keys - so I rang the doorbell and lo and behold (!) a man in a wheelchair rolled his way down the hall to greet me and open the door. Roch is practising. I felt so proud of him - and he felt good about himself, too. That's so Roch, once he makes up his mind to do it, he does it. So we're busy making sure everything he needs is within reach in the kitchen (he can still use the corkscrew and bottle openers himself (check) - all booze within reach (check), coffee machine (check). We have to get the priorities right.

He is having difficulty facing work in a wheelchair. Actually, Roch in a wheelchair loses none of the power of his personality and I use the word power deliberately. He has yet to realise this. He may be sitting down, but he still manages to tower over the rest of us.

He can't lift the chair in and out of the car himself and so we have to think around this. There's always 'Access to Work' - they already bring him in and back once a week. I can bring him in and pick him up some days, too. This week will be his first working at home for two days, instead of one. From now on, he will be home on Tuesdays and Thursdays. It'll give him a chance to rest a bit in between the days he makes the journey.

For the first time, he used the rollator when he was alone. He told me that he sat in the car for ten minutes beforehand, psyching himself up. He can still get it in and out of the car by himself. He really hates using it. But I think it is safer now than the sticks. Driving home, the monkey struck again. Roch's right leg played up. It wouldn't respond to commands and he's lucky he had enough control to drive (very very slowly, he said) up our road and park. Thank God he was almost home. Now this is the second time he's had a problem driving. He drove later in the day and had no problem at all. You may recall that the first time this happened was when we were coming back from Exeter, and we assumed it was muscle fatigue. Yesterday we speculated that it was the cold, as he had been sitting outside a cafe on the High Street for ages, he said. Giving each other false reassurance? Is this the first indication that driving will be the next thing the monkey takes away?


  1. Well done Roch, it isn't easy to make those transition. I try and think of them as victories over MND, enabling me to do something that it is trying to prevent me from doing. I try and think of my carer as a butler, getting her to do everything while I sit on my arse. Losing the ability to drive is tough, no escaping it although you do get used to it. I gave up in 2009 after my arms just couldn't turn the wheel far or fast enough. We had our wheelchair VW already but I had had other modifications made to enable me to drive it such as powered boot lid opening, lighter steering and a power step to help me in. I was able to get between the drivers seat and wheelchair through the car then operate the boot and ramp, get out, close it all up and head out. Then do the whole thing again in reverse later. but to be honest the prospect of doing all of that soon became a significant and within 3 or 4 months I couldn't drive anyway. It is the one expenditure I regret in hindsight, but illustrates the problem we all have when considering what to spend money on. You will know when its time to hang up the car keys. For me, having the offroad wheelchair cushioned the blow. If you ever want to come over to look at our setup you would be very welcome

  2. Hi Roch and Deirdre
    Look at my blog:-

    This is set up to try to give insight to new MND sufferers who, hopefully, will benefit from my experiences.