Sunday, November 21st 2010

End of the week roundup

We’re coming up to 3 weeks now since I arrived home from the hospice. In that time I’ve settled back into a regular routine, and although I am now being cared for by a new agency, I am for the most part still being cared for by people I’ve known for quite a while. And I’m grateful for this too as it gives me the stability and continuity that I need. We’re in the process of introducing some new faces as well and this will help spread the load and buffer against unforeseen events. Earlier this week my care manager called round and we had our first care package review. It was a big relief to be able to honestly say that there had been no problems during the first couple of weeks. All the calls were getting covered correctly and everyone had a willingness to cover for each other and a determination to ensure that it didn’t fail. Okay, it is only a fortnight but nevertheless it is encouraging. Having a core team of familiar faces with a proven track record has been a big plus and as long as we don’t have any major ‘unforeseen events’ then there is no reason to expect things to change dramatically.

Apart from that the only other visit of note I’ve had recently has been on Friday afternoon when my OT and the folks from Liftech called round to take a look at the extension and to finalise details for the X-Y axis ceiling hoist. I’m being told that as things stand we’re looking at about two weeks to get it fitted.

My appetite has been a bit up and down like a rollercoaster lately and on a number of occasions I’ve had to fall back on high calorie drinks to ensure I get enough nutrition. I’ve also continued to feel very sleepy when I wake up in the morning and tired and ready for bed halfway through the evening. Lately I’ve been feeling I could sleep my life away…

Because of my general tiredness I’ve not achieved a great deal recently. Writing has taken a backseat as I try to catch up with some much-needed reading so the blog is taking a lower priority than usual as I really do want to get on and do some other things, and unfortunately everything takes so long these days. I really miss the use of my arms!

One piece of news that did catch my eye this week was hearing that her Majesty the Queen has just formally opened The Sheffield Institute for Translational Neuroscience (SITraN). This state-of-the-art research centre dedicated to finding a cure for motor neurone disease is believed to be the first of its kind in Europe. How times are changing. Go back 20 years or so and very little was being done to unravel the mysteries of this insidious disease. And now here we are with an actual research centre here in the UK that will bring together scientists and medical specialists from around the world to work together on the problem. For people in my position this is like an early Christmas present, a glimmer of hope that before too long we will be able to flip over a few more of the jigsaw pieces that will give us the big picture. Okay, I’m not exactly expecting this to be a white knight for myself, but knowing now what this disease does to a person I can only hope that something can be done before too long to at least significantly slow it down so that others are spared the horror of having their life dismantled. You can view a short video courtesy of the BBC here or read a press release from Sheffield University’s own website here.

I’ll close out with another batch of photos that Debbie has kindly taken over the past week of the work going on in my new extension. As you can see the plasterer has been in and the ceiling has been boarded up so it is starting to come together. There’s been a lot of dust flying around lately and my carers have been kept busy constantly sweeping up and trying to keep the place dust free. We’re actually further ahead than these pictures suggest as towards the end of the week the walls were painted which has made a big difference. Apparently it’s a lot brighter too. I’ll post some more pictures soon. In the meantime you have these to enjoy and as you can see my fury little friend has been skittering around the place too!

My inquisitive little friend up to mischief again 🙂

Playing hide and seek!

Bedroom walls in the process of being plastered. 13th November 2010

Bedroom wall alcove. 13th November 2010

Bedroom ceiling now in place. 13th November 2010

View towards bathroom and electrics for hoist. 14th November 2010

Bedroom walls awaiting plastering. 14th November 2010

Bathroom taking shape. 14th November 2010

Bedroom walls plastered. 16th November 2010

Bedroom wall and alcove now plastered. 16th November 2010


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2 Responses to Sunday, November 21st 2010

  1. michelleoreilly says:

    Dear Mark have just discovered your website while researching motorneurone for a course i am doing.
    My thanks and admiration to you for your remarkable effort in dealing with this most dreadful disease!
    God bless you and bring you the peace you need.Your blog is an inspiration and joy to read.


  2. Lorna says:

    Hello Mark
    My husband has just received his recliner riser chair as is chuffed to have it. His fingers are swelling now and feeling tired most of the time but trying to remain positive.
    Your blog is so importnat to me as his wife it helps such a lot.
    it is great news about the new centre opening and a glimmer of hope.
    Keep up the good work and the extension looks good.

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