Heading for Autumn (September) – part 1

Calendar entries highlighted in yellow

1st September 2009 – New registration day

My brother and his wife called round at midday proudly showing off their brand-new car that they had just been and collected from the garage. It’s a Mazda 3 and looks superb in its high gloss black finish. I’m already a big fan of it not just because of the way it looks or its high specification, but because it has height adjustable seats which makes it a lot easier for me to get out of. As I walked around the car studying all the nice little design touches and admiring the well laid out interior I felt a pang of regret that I could no longer drive such a car myself. Still, at least I can enjoy being a passenger.

Proud owner...and envious brother 🙂 (photo courtesy of Chery)

Chery getting comfortable in ‘her’ car! (photo courtesy of Chery)

2nd September 2009 – More tests

I spent the day with my aunt and uncle who had kindly offered to take me to the Southampton Hospital for some respiratory tests in the afternoon. This time I decided to take my wheelchair with me as I was not feeling too strong today and wanted the reassurance of having somewhere to sit in case the walk from the disabled car park and then through the hospital to the first floor proved too tiring for me. We spent half the afternoon in the Respiratory Centre but most of that was spent in the waiting room either waiting for tests or waiting for the doctor. Despite last time hinting that I would have a full set of tests the next time I came I was surprised when I was subjected to only a few of them. At least I didn’t have to have an arterial blood/gas test which can be a bit painful. Anyway the good news is that there does not appear to be any further deterioration in my respiratory muscles compared to last time. I think this surprised even the doctor a little especially after the dramatic fall the previous time. Therefore she feels that there is no need for any form of intervention at this time and after discussion we’ve agreed that I will only contact her if my situation changes i.e. when I start to experience problems sleeping. We talked a little about non-invasive ventilation and I asked her if before we went down that road could we try altering my sleep position so that my head and chest are propped up a little as I understand that it is far more difficult to breathe when lying horizontally compared to standing up. She agreed and said that that is all that some people require to improve their breathing. So this is what I shall do as I am in no rush to have strangers sleep in my house each night which is what would be required as a condition of the hospital providing the ventilation equipment. As a personal target of my own I want to get through the remainder of this year breathing unassisted.

The other subject we touched on was PEG. I’m consciously aware that there is a narrowing window of time for this procedure to be safely performed should I wish it and today I wanted to seek the advice of a respiratory specialist to see how much longer I had to make up my mind. The answer, that I need to make the choice now, doesn’t really come as a surprise at all as my breathing is already less than 50% of predicted. I explained my dilemma and said that so far I had exhibited no bulbar symptoms i.e. I could still talk perfectly normal and had no problems swallowing food. Considering all the weakening in my breathing muscles that I was experiencing, it seemed at least to a layperson like me that I was more likely to suffer breathing issues before speech or swallowing became a problem. I was therefore leaning quite heavily in the direction of saying no to having PEG fitted as for the foreseeable future it would be something that would have to be constantly maintained each day and yet never used. Having a PEG is a way of delivering food (or medication) if you cannot take it orally, but it is still not a guarantee that you will not lose weight or be prevented from choking. In fact it adds the additional complications of possible infection. I just feel that having a PEG fitted and seeing a plastic tube dangle from my chest would make me feel like I have reached a certain milestone in disease progression despite showing no signs of deterioration in my appetite or ability to eat. From what I could tell the doctor seemed to agree with my train of thought and could tell just from talking to me that my speech was not affected and indeed may never be or at least not until the late stages by which time I’ll have other things to worry about. At the end of the day it’s a personal decision and to some degree it is a gamble. I’m gambling that I’ll suffer respiratory problems before the disease progresses to my throat. But then again all life is to some degree a gamble and it’s important to realise that all the interventions being offered do nothing to alter the progression of the disease. They are only designed to manage the symptoms and to make life more comfortable. The outcome will always be the same.

3rd September 2009 – It’s here! / A new hope

Finally after what has seemed like an endless wait my stairlift has arrived. I was expecting the installation to be a two-man job but in fact just one man, Stewart, turned up and fitted it all by himself in about four hours. I was expecting there to be a lot of noise and dust flying around but he made remarkably little noise and was very clean. The installation has turned out a lot better than I had imagined it to be and blends in quite well thanks to a seat colour that matches my carpet and a curved track that is a fairly close colour match to the walls. The big surprise is that I have not had to give up the decorative hand rail that follows the stairs from bottom to top. Some months ago when I was at the quotation stage I was being told by everyone that it would have to be removed because there was insufficient clearance and yet somehow they’ve managed to design it to work with in place. Splendid!

Now at this stage I’d like to say that I’m now the happy owner of a stairlift that works beautifully and I no longer have to worry about using the stairs. Unfortunately when he was finishing up and starting to demonstrate it to me we hit a major problem. None of his installation instructions mentioned the fact that I cannot move my arms and therefore required a hands-free solution as previously discussed back in June. The chair had a standard joystick mounted in the left arm which I would neither be able to reach or operate due to paralysis and weakness. There was supposed to be some kind of foot operated switch so that I would just need to sit in the chair and press and hold the switch with my foot. None of this equipment had been supplied so the fitter left me with instructions to contact my OT whilst he promised that he would raise the issue with his boss.

So a bit of a disappointment really. They’ve not supplied what we asked for and there is no way that I can physically operate the stairlift in its current state. There are call buttons at the top and bottom of the stairs but these would only be of use when summoning the chair. For the stairlift to work you need to be applying constant pressure to the switch which of course is of no use if you’re sitting in the chair and the switch is mounted on the wall. So at the moment I’m actually worse off than I started because I now have a curved track occupying the widest part of each stair tread forcing me to walk up the stairs using the narrower end of each stair tread. I’ll have to be extra careful when using the stairs now.

I spoke to Marion, my OT, this evening to put her in the picture. She’s been in touch with the company fitting the stairlift and has arranged for them to call me tomorrow as a matter of urgency.

I had a phone call this morning from the home care manager of my care agency. She was calling with the good news that a carer that I had identified as being ideal to join my care package has agreed and was prepared to commit to 3 evenings a week plus would be willing to step in and cover for other people in my team as and when needed. So from next week Kim will be put in as the default carer for three weekday evenings every week. Kim brings with her years of experience (unlike some of the people who have been sent to me lately whose experience is measured literally in weeks) and has been with the agency practically since they started. Although she’s not previously cared for somebody with MND she has plenty of experience with MS, another complex disease. Kim is another one of those people like Alison and Francesca who immediately impressed me with her thoughtfulness, attention to detail and pleasant personality. Unlike some of the people I’ve had recently who show little initiative and hover around when I’m eating instead of finding things to do, Kim is constantly looking to see what needs doing. She utilises her time much more efficiently and she certainly comes across as far more professional. So fingers crossed things might actually be starting to improve a little after a bumpy few months.

4th September 2009 – More stairlift problems surface

Tim, a Liftech engineer called early this morning to take a look at the problems I was experiencing in being able to control the stairlift in a ‘hands-free’ fashion. But instead of bringing a rocker switch with him, which is what I thought he was going to do, he removed one of the call switches from the wall and proceeded to experiment by placing it in different positions on the footplate whilst I was sitting in the chair. Trying to position my feet so that they could activate and then hold down the switch for the duration of travel proved difficult. We then experimented on placing the switch vertically behind the footplate so that I could activate it with the heel of my foot. This seemed like an improvement until we discovered that the switch prevented us from raising the footplate when not in use so that it wasn’t a trip hazard for other people using the staircase.

However, an even more worrying concern surfaced when we tested the stairlift and I found that it stopped short of the landing. Even when the chair had pivoted round it still did not allow me to place both feet firmly on the landing. I’m finding these days that I need to brace my legs further apart when standing up to give myself some stability. Trouble is when I try to do this at the top of the stairs when seated in the chair I find that my right foot is protruding halfway off the landing. At the moment I would have no confidence in trying to stand up and lean forward as I know that as soon as I place weight on my right leg it could slip off the edge of the stair tread. With the chair hanging over the stairwell it just doesn’t feel safe. I’d be even less inclined to reverse back into it to sit down knowing that the chair is already in the stairwell.

Marion is out for a few days now so another OT, Claire, called round later in the morning to see and understand the problems for herself. She’s booked a meeting for late next week and arranged for Marion as well as members of Liftech and Freelift to call round my house to discuss the problems. I’m really quite concerned about all this now as it’s beginning to look like they have not fully understood the problems I’m facing or engineered a suitable solution. Even if I had somebody present to operate the stairlift using the call buttons I would still have problems getting off at the top because the stairlift does not deposit me on top of the landing. Interestingly one of the pictures in the brochure clearly shows the stairlift on the landing at the top of the stairs not adjacent to it. In my case there is a limit on how much further the track could extend onto the landing before it obscures a doorway. It will be very interesting to see what they say next week. In the meantime I’ll have to be very careful on how I use the stairs and just hope that my legs continue to hold out.


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