Heading into summer (June) – part 1

Calendar entries highlighted in yellow

1st June 2009 – A good start to the month – not!

The fan oven on my cooker is blowing cold air! It suddenly dawned on me to check it this morning after one of the electrical circuits in the house tripped yesterday evening when my carer was here. The circuit took out my central heating boiler, cooker, desktop PC, bedside clock and my new electric door openers. That’s when we discovered that something was wrong – when she tried to leave the house and the doors failed to respond! Thankfully once I’d directed her to reset the MCB everything returned to normal and I thought no more about it. But it was obviously playing on my mind today as I recalled a similar circuit failure three years ago when the heating element on my fan oven blew and tripped the MCB. I was particularly unlucky that time as my desktop PC was in the process of writing to the hard disk. The sudden power cut resulted in the hard disk crashing and total data corruption. Thank goodness for backups. So when I asked Ann to switch the fan oven on this morning it wasn’t a great surprise to find it still cold after 10 minutes. I then had to rely on Ann who was kind enough to stay and help me find a repair company. My arms are so bad now that I just can’t flick through the pages of trade directories and even dialling multiple phone numbers tire my fingers out. Anyway, with luck it should be repaired by Wednesday.

I’ve received some paperwork from the council on the preliminary means test for the Disabled Facilities Grant. Phoned up Cheryl to see how things are progressing and was told they are just waiting on the final stairlift quotation. Once that’s in she’ll issue a release note so that we can go ahead and place an order.

2nd June 2009 – Techie stuff

It’s been a very hot day with temperatures around 25 deg C. I actually managed to spend some time sitting out on the patio before the sun moved round to the back of the house and turned it into an oven. I’m normally catching up on emails and news in the morning but had my computer tied up upgrading to the new Service Pack 2 for Vista so didn’t want to disturb it. In the afternoon I had a break from all things MND and evaluated the new Windows Live Mesh which enables you to keep your files synchronised across multiple devices such as desktop and laptop computers, PDA’s and smart phones. I really do believe that it helps to keep your mind occupied and engaged in interesting things and I actually enjoyed playing around with the software. It reminded me of the days I used to evaluate software at work so I could train others. I think if I just sat around and brooded all the time I would deteriorate a lot quicker so learning things like this keeps me active.

3rd June 2009 – A repairman calls / A new way to go shopping

Had a bit of a restless night. It was hot and I just couldn’t get comfortable on my back. With my arms and hands becoming ever more paralysed it’s becoming harder to know where to rest them. I really do miss being able to turn on my side but it just hurts my shoulders too much.

The cooker repairman arrived early this morning, diagnosed the problem and quickly confirmed my suspicion – it was the heating element. These things don’t take long to swap over and in no time at all I had a hot oven again – and withdrawal symptoms over how much it cost. That’s two elements in less than eight years. They don’t make things to last these days, that’s for sure.

Francesca called round midday to prepare my lunchtime snack and to use up a little of this week’s social time by taking me to the supermarket where I had my first experience of being pushed around in a wheelchair. I had intended to walk around the aisles but half way round my legs started feeling rather weak so a concerned Francesca went off and grabbed one of the courtesy wheelchairs that Sainsburys provide. I must say that it felt rather strange seeing the shop from a lower height but apart from that the only thing I worried about was the embarrassment of running into people I knew – I know, silly really. I’ll get used to it. But at the moment I’m still in that intermediate stage between walking and not.

Cheryl (the Grant Officer) phoned to say that all three stairlift quotes are now in. Price and feature-wise they’re all pretty close so I’m just waiting for an authorisation note to be issued so I can go ahead with placing an order. I’m actually paying for the stairlift out of my own funds so the purpose of the authorisation note is to ensure that this amount is deducted from whatever I will be required to contribute towards a Disabled Facilities Grant to adapt the house – assuming I get it.

4th June 2009 – Dinner with Alison

It’s been a hot sunny day again and I’ve spent an enjoyable afternoon down at West End (near Southampton) with Alison, my lovely friend and carer. We had a really nice and relaxing meal at Haskins together. I’ve never been there before and imagined it to be a restaurant of some kind so was rather surprised when it turned out to be a garden centre. But it’s not like any I’ve been to; this place was huge and more like a superstore, catering not just for all things to do with gardens but also all manner of gifts for the home. Tucked away at one end was a large restaurant split into two rooms and overlooking some of the larger plants and a screen of trees, behind which I caught a glimpse of a couple of Spitfires flying low – bonus! Alison treated us to a lovely roast lunch with all the trimmings, a huge piece of triple layer chocolate cake and a pot of tea – nothing wrong with my appetite although I was grateful that Alison helped feed me when my arms tired. All in all it was a pleasant afternoon. It’s so nice to be able to still go out for a meal and have a change of scenery. Thank you, Alison.

‘Gavin the Gardener’ has pretty much finished tidying up the front and back garden this morning. From now on he’ll call every two weeks just to keep it up to scratch. It looks so much better now.

7th June 2009 – Frustrating weekend

I’m having real problems with my hands again this weekend and it’s starting to seriously impact my ability to interact with my computer. As this is both a crucial tool and just about the only thing I now have which can occupy and engage my mind throughout the day, I am understandably rather concerned. I’ve mentioned before that I use an adapted Ergo Rest to support my right hand and arm with the fingers hanging over the edge. The trouble now is that it is becoming increasingly difficult to keep my fingers straight. They keep trying to curl in towards the palm and this has the effect of my fingernails making contact with the trackpad instead of the fleshy fingerprint area of the finger. Trackpads don’t respond to dragging fingernails so I’ve spent a frustrating amount of time staring at a cursor that refuses to move. Annoyingly it would seem that fingernail length is now directly affecting computer usage and I’m having to keep asking for them to be clipped! Need to find some other solutions – like finger splints for example. But aside from that my fingers are just getting that much more tired and need frequent breaks. My ability to type cannot keep up with my thoughts. Very frustrating.

Mark

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One Response to Heading into summer (June) – part 1

  1. jane c says:

    Richard had two fabulous custom built finger splints made by his OT, with those rubber page turner thingies on the ends of them which kept his two index fingers in the right position (there’s a photo of them on our blog in the aids section) and they kept him going for a bit longer.

    I take it from the way you are still talking about what you eat, that your voice and swallow can’t be affected, so why not look at voice activated software. Not something I have experience of, as Richard lost his speech VERY early on, but Neil Platt in his blog (see entry Wow! could it be the T-shirt? Feb 16 2009) obviously had something really good, arranged through AbilityNet (have you been in touch with them yet?).

    Glad your garden looks good again – I know how irritating it is when it doesn’t look nice, I’ve had two carpal tunnel operations on both hands in the last 3 months and can’t yet muster the strength to tackle the weeds, which are growing in abundance after the recent mixture of rain and sun – just a small taster for me, perhaps, of the frustrations caused by MND?

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