Sunday, December 12th 2010

End of the week roundup

Not too much to write about at the moment which is probably just as well as I’ve not been feeling too good lately. My appetite is very poor at the moment and today for instance I’ve hardly eaten anything so far, which means I’ll probably be relying on high calorie protein drinks to boost my nutrition this evening. My legs have been giving me some trouble this week as well and this is making it increasingly difficult to operate my computer which only adds to my frustration. At times I just sit there staring at the screen unable to move the mouse cursor. It’s such a simple thing and yet it is slowly slipping away from me. To compensate I’ve been trying to do less ‘interface intensive’ tasks such as reading or listening to music. The blog has been given a bit of a rest although I did try and spend a little bit of time yesterday trying to create a Christmas e-card but gave up when it became too difficult to move the objects around the screen. I’ll try again next week!

I’ve had a couple of visits this week. The first was from Chris, my OT with the PCT. She’d dropped by to collect some of the equipment that I can no longer use. The past three years are littered with a trail of equipment that is issued one month and then discarded a few months or a year later. Such is the nature of a disease with a progressive disability: things don’t wear out, MND just moves the goalposts! This week I said goodbye to a glideabout chair that served me well for some time last year whilst I was still able to sit at the dining table and feed myself, a custom-made mobile arm support that was supposed to make eating easier but proved less than satisfactory and ultimately got used very little, a kettle tipper that for a brief time enabled me to continue making my own hot drinks (provided that the carers left it filled with water), and a pair of Ergo Rest Mobile Arm Supports (with customised extra long arm supports) that get the award for being the most useful piece of kit I was issued. It was only thanks to these that I was able to keep using my computer for so long before voice recognition software became a necessity. Now however my only hope is that they prove helpful to someone else in a similar situation. Far better that than have them all gathering dust here.

My second visit this week was from Sheila, a complimentary therapist at St Michaels Hospice. I’m in the process of having a series of about six complimentary therapy sessions here in my home, and today I was being given some head and shoulder massage whilst listening to some very soothing music, preceded by having mandarin and sandalwood oil worked into my hands and arms. All very relaxing and thoroughly enjoyable. I just sat there purring. It’s nice to be pampered!

In the latter half of the week there has been a carpenter downstairs busy in the extension fitting skirting boards in the new bedroom and (finally) a door into the extension. At least now the living room should keep warm. But the constant noise from all the drilling, sawing, and banging that drifted upstairs made it virtually impossible to operate my computer by voice. The background noise scrambled all my attempts at communicating with my computer, and at times it would seem to go haywire, opening windows at random. I gave up trying to get anything done and waited until they had finished for the day. Anyway at least we’re making progress so I mustn’t complain too much. Debbie has kindly taken a whole new batch of photos this weekend but I have yet to find the energy to run them through Photoshop to do all the tweaks. I’ll try and make them the subject of the next post.


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4 Responses to Sunday, December 12th 2010

  1. Farah says:

    Hi Mark,
    I have been reading your posts. My Dad fell asleep November 26th, funeral was 10th……..I feel like there is a whole huge gap in my life…..So I am back reading your posts. Keep me going, coz I am missing him a whole lot.

    • mndals says:

      Dear Farah,

      I was so sorry to hear of your sad news. At times like this words seem so clumsy and inadequate. I know that one of the stock answers people often say in situations like this is that they have gone to ‘a better place’ but that is of little consolation to those who are left behind. It is always hard when we lose someone, especially someone so close. Cherish the moments that you shared with your dad and take some consolation in the fact that he is no longer suffering from this horrific disease. My thoughts are with you and your family.

      With very best wishes


  2. Linda says:

    Hi Mark

    Sorry I haven’t been in touch. My daughter, Liz, had her baby 11days late on 25th Nov, so I’ve been helping her, and another daughter, Emma, is over from Canada for Christmas so I’m pretty busy. I’m hoping to get back to visiting after christmas. i was hoping to read that your extension was finished. Hopefully it’ll be done soon.
    We have 2 new visitors starting after Christmas so I’ll have some help.
    Hope you have a good Christmas


  3. Trish Cook says:

    Hi Mark,

    I wrote to you early November after I had completed the first half of my training to become an Association Visitor. Well, I am now a fully fledged AV and will soon be visiting people with MND and their families. I do hope I can make some difference to their lives.

    Once again, I want to thank you for your blog as you have certainly given me some insight into the disease that will prepare me for my new role.

    I am sorry that you are not feeling too good at the moment and hope you gather some more strength to continue to do the things you enjoy.

    I must admit I was very envious of your head and shoulder massage.

    My very best wishes to you for Christmas.

    Trish Cook

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