Tuesday, July 13th 2010

Two weeks on

Hard to believe that it’s been two weeks since I arrived at the hospice and a little longer than that since I stopped walking. What amazes even me is how easily I have made the transition. Perhaps it’s because over the past month or so before I was admitted to hospital the only walking I did was to and from the bathroom, bedroom and study, and if you added up all the minutes I spent on my feet each day it would still come to less than half an hour. Looked at that way I was almost there anyway, but losing those last few minutes signifies the transition to the next phase of the disease… and all that it entails.

Ann was back from her holidays today so we’ve taken the opportunity to start rolling out some training for my carers in readiness for when I get discharged from the hospice and returned home. All my carers are trained in manual handling, but up until now they’ve never had a need to use those skills with me, and as I am in some cases the only client they care for they don’t get regular practice. Also there is the simple fact that no two people are the same and in my case the MND has had almost 3 1/2 years to waste away the muscle tissue around my upper body. This will mean that special care and techniques will be required when handling me to avoid damaging the shoulder joints and causing pain. An example of this is that I cannot be rolled on the bed. So today Ann had the benefit of working with the lovely Tracey, one of the staff nurses who is very good at instruction. Later in the morning after my Jacuzzi bath, Jean (one of the hospice’s physiotherapists), dropped by to pass on some hints and tips on performing passive movements on my arms and legs.

I had a meeting with Rachel, my social care manager, today to discuss progress on all the various outstanding issues that are preventing me from returning home. One thing that was becoming clear is that we are not going to meet next week’s discharge date. We have therefore moved this date back to around the end of the month which will hopefully allow us the time to get people identified and trained up as well as equipment delivered and trialled.

My laptop computer was picked up by courier late this afternoon and taken away for repair. The company I had contacted on Sunday evening e-mailed me back yesterday morning saying that they would fast track a repair for me. They operate a system whereby collection and repair quotation are free (return is £25). They’ve even provided a transit case, acknowledging the fact that most people discard their original packaging. Hopefully they’ll contact me again in the next day or two and fingers crossed the fault is economically repairable.

I shall be trialling a new mattress overlay tonight that sort of looks like a giant upscaled version of bubble wrap. Each ‘cell’ is pumped full of air using something similar to a bicycle pump. You then lie on it and air is released until it moulds around you. The whole thing is designed to sit on top of a foam mattress like I have at home. The reason for trying it is that although I have a very good alternating pressure mattress here at the hospice, it is very expensive. Also that particular model has not been made available in the community so therefore they are trying to come up with a cheaper solution that will meet my needs.


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