30 September 2010
This turned out to be a crunch day for considering the future. The problem being that we do not know precisely how long that future is and when changes to our present routine will be necessary. The two matters that we gave some considerable consideration to today, were how we would cope when I was no longer able to stand, and how to improve my voice control of the computer.
Our wonderful OT, Sarah Moss, came to discuss the hoist problems in the bathroomÂ and although she brought some brochures with her none of them would work without me having some strength in my lower limbs. Of course, the main problem always comes down to a lavatory one. Yes, we will be able to use the main hoist to get me out of bed onto a commode or a wheelchair. BUT
Will Alice be able to do that on her own or, as recommended, will she need a second person?
If a second person is necessary for getting me out of bed, to lavatoryÂ me, shower me, and dress me, then what time will they come in and how long will they need to stay?
What happens if I am unable to ‘go’ to the lavatory in the brief period when the helpers are here and the urge comes on me an hour or so later? Incontinence pants?
Having got me to the point of sitting in the wheelchair fully dressed will we be able to move the hoist into the study and transfer me from the wheelchair into the main chair in front of my laptop and will Alice be able to perform this exercise alone?
Alternatively, if I am put into the electric wheelchair and drive out to the office, how will I Â move from that chair to my office chair and back, or will I need to sit in the wheelchair all day?
What happens if I need to move from that chair during the day before the evening helpers, if we need them, come in? Will we need to arrange a short lunchtime visit?
Of course, ideally one should have a permanent helper to be on call when required. Wouldn’t it be great to have some sort of robot that you could call on from time to time when needed but life just isn’t like that. Full-time carers are out of the question in terms of cost.Â We will have to work in with whatever arrangements we make with either social services helpers or private helpers.
All of this may appear to be premature whilst I am still able to move about using the gutter frame but my arms and legs are both weakening by the day, so it is best to plan ahead the two or three months, or hopefully more, and therefore be prepared. If we wait for the day when my legs give out altogether and we do not have something in place, I could see myself being carted off to hospital, or a care home, whilst things are worked out, and that I will not countenance,
The second problem involves the computer. A very nice young man called Charlie, who is a consultant to AbilityNet came for a two-hour session with me today. Charlie is a specialist occupational therapist who has worked extensively with MND patients, helping them to get the best out of their PC or laptop, so could not have been a better person for me.Â
This visit was in answer to my request to AbilityNet as to what I would do when my hands no longer functioned and he showed me a number of devices that can be used such as a chin, hand or foot switch which can be operated with the gentlest of touch. However, he recognised that I am not yet at that stage and he says when I am, something can be arranged very quickly.
Basically, we spent much time on considering a greater and more effective use of voice activation which fortunately I have been using for the last 15/20 years stop. I explained that I get rather impatient I tend to use my one finger rather than voice commands for correcting documents.. There is, no doubt, that I could do almost everything by voice and I have committed to attempting more and more in the near future. Even so, Charlie is recommending another two-hour training session to improve that aspect. He is also recommending I have two armrests whilst I can still use my finger to hover my weak arms, above the laptop keyboard.
I suppose what I got most out of this session was that nothing is impossible. As Charlie pointed out, Prof Hawkins uses an eye blink switch to move letters about on the screen to spell out words. Basically a slow and painstaking process and oneÂ that one can achieve given the patience, which I wonder if I possess?
The most disastrous piece of news we heard was that Sarah will be moving jobs, sometime possibly in the near future, and therefore will no longer be our OT..We have come to rely on her so much and she has been brilliant in everything we have needed.
So not a great day, all in all, but at least we are facing up to the future, whenever that comes, and hopefully I will be well enabled to continue to lead some sort of active life. Althoughh, I have not mentioned ‘ my lovely’ in all of this, of course, she is a pivotal part of all of these possible changes, except perhaps for the laptop.
Sue here, having finally found a few moments to read your recommended blog! I am not sure about the ” incontinence lady” title! (My father once checked in to a hotel with my sister, myself and my Ma saying 2 “ladies” and my wife! I do not think it went down very well with my Ma but it gave the receptionist a bit of a laugh. She then called him a cheeky bugger which was probably the first time he had ever been called that in public! thankfully he has a very good sense of humour.)We are generally known as continence specialist nurses these days!
I digress..the reason I am actually writing is to reassure you that bowel managemnt in your more debilitated state can be helped by a system of rectal irrigation called Peristeen. It was developed at Stoke Mandeville and can be relatively easy to use by anyone caring for you. It is not perfect but is an option should other methods such as suppositories, enemas etc not be suitable. I can organise this to be available for you if needed. Best wishes. SB
it’s good to have an ‘ incontinence lady’ with a sense of humour, goodness knows you needed doing what you do.
I have e-mailed you separately about the other matters will stop