High Summer (August) – part 2

Calendar entries highlighted in yellow

10th August 2009 – Going up in the world

Roger the craftsperson from Hampshire Adult Services called round this afternoon to take a look at my sofa to see what could be done to raise it up further. It’s already resting on 3 inch extension legs fitted earlier in the year which at the time made such a difference. Unfortunately the disease has moved on since then and it’s becoming borderline whether I can get up by myself from that height. Roger has been able to fashion a couple of timber struts with some mounting blocks to which the extension legs are now attached to raise the sofa up to the required height. He’s actually done a good job and the whole thing looks quite presentable. It’s certainly much easier to get up when I’m sitting on it. A simple but very effective adaptation.

12th August 2009 – Ann to the rescue – again!

My care agency made an ‘administrative error’ (they’re not doing too well lately) which resulted in a mix up with carers and no one being assigned to do my evening call. It only came to light when I grew tired of waiting for someone to turn up and had to phone up the out of hours help desk. After a series of frantic phone calls my ever reliable Ann rushed round and cooked a meal, made sure I had plenty of drinks to hand and had my medication. Thank you once again, Ann, especially for coming out so late tonight. Where would I be without you?

17th August 2009 – Stumbling along

It’s been one of those days! I had another problem with my care agency and was left without a lunchtime call and consequently nothing to eat. My regular lunchtime carer had notified the agency at 9am to say she’d hurt herself and couldn’t make it, but it wasn’t until 2pm that the agency contacted me to say they were trying to get hold of someone still out on the road. By this time though it was becoming too late as there would not be enough time for someone to arrive, prepare food and for me to eat it before being picked up for a doctor’s appointment so I had to cancel it. Fortunately, Jim and Val, my lovely friends from Neighbour Care, made me a hot drink when we got back from the surgery. Oh, and my appointment? Total waste of time. After sitting in the waiting room for ten or so minutes we were told that my doctor had been called out on an emergency and we would have to re-book. So back I go on Wednesday.

18th August 2009 – Thank you again, Ann

Where would I be without Ann lately? Not only did she do her usual morning personal care/breakfast/housework session but also got the care agency out of trouble by stepping in at lunchtime and again in the evening. I’m really starting to be concerned about the intermittent nature of my service lately. I have a care review coming up soon so I’ll try and get some answers then.

19th August 2009 – 45 / Presents from AbilityNet

It was back to the doctor’s surgery this afternoon, courtesy of Jim & Val, for a second attempt at my monthly appointment with my GP. I was finally able to see what the results of last month’s lung function test were and part of me wished I hadn’t. Unfortunately, although perhaps not unsurprisingly, there has been further deterioration. My FVC (Forced Vital Capacity) now stands at 45% compared to 52% back in March. It would certainly explain why I’m feeling that little bit more breathless when I physically exert myself by doing no more than climbing the stairs. And to think back in 2007 shortly before my diagnosis I was above average at 109%. So in just under two years I have lost slightly more than 60% of my breathing ability. Crikey! And yet despite what the figures say I am still able to get a good night’s rest and not wake up constantly through the night or in the morning with bad headaches. I guess it affects everyone different but common sense tells me that sooner or later my good luck is going to run out and I will need help breathing.

My brother, Jason, called round this evening to setup some of the equipment that I had received yesterday from AbilityNet. This included a foot mouse and switches, gooseneck microphone, and the Dragon Naturally Speaking speech recognition software. All of this was plugged in and installed on my laptop computer. I’ve also received a wireless foot mouse and switches for the media centre computer connected to the TV although we did not have the time to set these up this evening. After my evening carer and brother had left I spent a little bit of time playing around with my new toys. The foot switches, which replicate the actions of the left and right mouse buttons, are going to make life a lot easier for me when performing click and drag operations when photo editing. The speech recognition software also looks promising, and certainly more accurate than the one bundled with Vista. In fact today’s whole blog entry has been typed ‘hands-free’ simply by dictating into my new noise cancelling microphone. I’ve not even run through the tutorials yet but have still managed to be productive with the software. I’ll try and put together a separate blog entry on speech recognition at a later date once I’ve fully understood how the software works, which hopefully will prove useful to others in a similar situation as myself.

Mark

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