High Summer (August) – part 1

Calendar entries highlighted in yellow

1st August 2009 – Some normality returns.

Francesca is back after a two week absence and instantly brought a smile to my face with her bright and cheerful manner. For the last week I’d been cared for by stand-ins so it was really nice to see a familiar face again.

It’s my youngest brother’s birthday soon so Francesca took me shopping for gift wrap and a card. When we got back she creatively wrapped up the presents and wrote out the greetings whilst I looked on helplessly but at the same time gratefully. It’s so frustrating now not to be able to even write a few words in a card. I’m so lucky to have people like Ann & Francesca caring for me. They really do go out of their way to help me. I’d be lost without them.

3rd August 2009 – Ejector seats!

Ann was kind enough to take me to the hairdressers this morning – yes, I know it needed cutting! Had the same problem getting up from the chair though as I’m finding everywhere these days, i.e. I needed help. Afterwards we called in to the Hearing & Mobility shop to take a look at riser/recliner chairs. I was able to try a couple out and very comfortable they were too and much easier to get up from when tilted forward – however, my hands are so weak now that I couldn’t operate either the toggle switch or push button remote controls. And like the stair lift, the switches require constant pressure otherwise the chair stops moving. I just can’t maintain pressure with my fingers anymore. So it looks like an ‘off the shelf’ product is going to be unsuitable and would need some kind of adaptation. Another concern would be if I lost my grip on the corded remote control. I have so little use over my arms that I could end up stuck in the chair unable to reach the remote.

4th August 2009 – A visit from CommuniCare

Heidi from CommuniCare called round to talk about and give me a demo of a call alarm system – basically an emergency lifeline hooked into a response centre. I’m definitely at the stage where I need help getting up from the floor should I fall over so this is all a bit overdue. The system comprises a box of electronics with an in-built speaker plugged into the phone line. You then have the option of either wearing a pendant alarm around your neck, which is of no use in my particular circumstance as I cannot lift my arms, or you can wear it on a strap placed around your wrist like a watch, which is what I tried. First problem I encountered even when just sitting on the sofa was trying to get my semi-paralysed right arm into a position where I could reach my left wrist. Talk about struggle! Second problem was that I didn’t have enough strength in my hand to push the button. Yes it’s that same problem I encountered when looking at stair lifts and riser/recliner chairs. I just can’t operate anything! Next option was to place the switch inside a rather large plastic U shaped frame and strap the whole thing to my wrist. It certainly made it easier to press the button but was huge and clumsy looking on my wrist and liable to catch on things. Because I currently don’t have a night call at the moment I would have to wear it in bed where it could easily be activated by mistake as I wouldn’t be able to remove the strap myself. Another problem is when it gets colder and I return to long sleeved clothes. With that large frame on my wrist I would not be able to get my arm out of my sleeve. Another option we looked at was a fall alarm which again proved unsuitable because it self-activates as soon as it detects you are in a horizontal position – not so good when I’m lying in bed! So at the moment I’ve had to hold fire on this idea until I can get further advice. MND sure makes things difficult.

6th August 2009 – A little bit of good news

Had some wonderful news today from Becci, a colleague from my days at Eli Lilly. Shortly before leaving last year I made a request that the Motor Neurone Disease Association be put forward as the next Eli Lilly (Basingstoke) Charity of the Year. Well it looks like my wish has been granted although funding for charities has altered so that a different one is appointed each month. The MNDA were Lilly’s Charity of the Month in June. So a big thank you from me to everyone who contributed. I’d also like to say a special thank you to Becci who’s been working hard on behalf of the MNDA through a series of Ladies Night fundraising events. Well done, Becci, and good luck with the next one in October!

7th August 2009 – A visit to the Orthotic Centre / Trouble with a carer

I spent an hour up at the Basingstoke hospital today discussing the problems I’m getting with keeping my fingers straight when trying to type for long periods. I’d already been trialling a finger splint that Chris, my OT had supplied, but she had put in a referral for me to see the folks in the Orthotics Centre in the hope that they might be able to come up with something better. As it turned out it was all a bit of a waste of time. The referral (which wasn’t signed off by my regular GP as she’s on holiday) was very vague. Consequently the young woman I saw was unsure of what she was being asked. To make matters worse she had little experience of finger splints and specialised more in feet. We ended up looking through what appeared like the same catalogue as the one my OT showed me. All she could suggest was a tubular splint designed to just slip over the finger. She’s going to order one for me to try.

I had a disagreement with one of my new carers this evening which ended in my asking her to leave my house…and she won’t be coming back either! She’d only been in my house a few minutes when she confronted me with her concerns about my having a guest present in the house the previous evening when she was cooking my dinner. She said (in a stern voice) how it made her feel uncomfortable and that she felt like a maid! I’ve no idea why this should be as my guest immediately introduced herself in her usual friendly manner and in no way encroached on the carer’s duties but sat quietly out of the way. In fact it was the carer who cold-shouldered her much to my embarrassment. Having a carer making me feel bad about having guests in my own home was bad enough, but when I asked her how she would have felt if my brother and his wife had turned up and was told “well I haven’t come across that scenario yet” it really angered me. The cheek of it! I’ll be damned if I’m going to be made to feel uncomfortable having family or friends in my own home just because a carer is present. Other carers had managed just fine. There’d been a few other things I’d not been happy about with her so I took the opportunity to raise my concerns. In for a penny… Oh well back to square one. All I can say is come back Alison, please – I really need you!

I would like to say a big thank you to Ann, one of my remaining long-term carers, who rushed round to my house to make sure I had a dinner and received my medication. Thank goodness I have some really loyal people supporting me who genuinely care.

Mark

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One Response to High Summer (August) – part 1

  1. I can’t believe the problems that you are having with getting things sorted out as you are obviously not the first person with MND. They must have come across these situations, like lack of finger strength, with others needing chairs and personal alarms, so what did they do then?

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