3 April 2012
The first, of our two visitors today was Sarah Lahert, the Area Manager for Sumed International, the official agents for the Roho cushion that I have been going on about over the last couple of weeks. What it came down to was this the cushion, that my OT had kindly managed to extract from the NHS, proved to be 12 years old, lacking in its covering and was almost certainly well past its ‘ sell by date’. Sarah reckoned about five years was the average life for such cushions, perhaps a little longer if just one person had used it but over the years, if a number of different people sat on it, the differential pressure could affect the individual air pockets and render it unable to perform its function
I was especially pleased to learn that the other cushion, the one that they provided for my wheelchair, was top of the range and was probably brand-new. What surprised me was the wheelchair people did not give us any instructions or an air pump and a puncture kit, all, apparently necessary to maintain this cushion. Sarah adjusted the air pressure and showed us how to do it for ourselves. The overall effect was that the patient should feel as though he/she was sitting on a soft pillow. I must admit, after her adjustments, this cushion did feel softer and more comfortable (that may be because I was expecting it to!). The test will come after I have sat in it for 13 hours, when normally the last two or three hours the other cushion gets very uncomfortable.
Ideally one should have one of these cushions in the wheelchair and the other in the lounger but knowing how expensive they are (anything between £450 and £675, depending upon which supplier you went to). I think the chances of getting a second one remote.
So, it just means when I’m hoisted out of the lounger chair someone whips out the cushion and puts it into the wheelchair before I am lowered,
I must say you. I wish I’d known about this Roho cushion a little earlier. It’s like so many things that we have found useful or necessary. In many instances we have had to discover them for ourselves and then usually our team are prepared to provide them. This harks back to a suggestion I made to the MND Association, a year or so ago, that someone should prepare a little handbook of tips for new MND patients pointing them to various gadgets or anything that would enhance their quality of life, the Roho cushion being typical. Incidentally I love the name Roho it has very jolly ring about it and I am very grateful to Sarah for making a special trip just to make sure we were happy with one of the cushions. That’s service for you. I shall report back on my experience of sitting for long periods on this cushion.
My second visitor was Gavin from Able 2, a company that has a very large range of medical equipment, but the one I’m concerned with is my’ floating’ armrest. It is a wonderful gadget to which I clamp my left arm and by a series of spindles and complex looking joints, it relieves the weight of my arm and allows it to hover over the keyboard. The up and down movement of this arm being affected by a serious of heavy duty elastic bands. One of the joints had come adrift which Gavin kindly replaced and at the same time adjusted various other parts of this incredible piece of equipment to make it more effective.
Since the only use I have in my left hand now is one finger sticking out of the special plastic splint that my splendid OT (Occupational Therapist) Lynne Gates, had made for me, without this piece of equipment I very much doubt whether I could press any of the keys on my laptop as my fingers and my arms are now very weak. I must try to do more and more on my laptop using voice activation, as it should be possible to do around 95% using my voice. There are always one or two key sequences which I believe I might need help with otherwise, with patience (of which I’m not blessed with an abundance), I should be able to continue sometime to use my laptop to its full potential.
With these two visitors and the residual fatigue from the previous day, I was quite tired and did not achieve that much today. But then there is always tomorrow, so the saying goes!
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