Not feeling witty today

I have recently started using my feeding tube for supplemental nutrition. I have been struggling for a while with eating; many types of food have become difficult to eat and even the easier ones still take time and occasionally result in a choking incident. The effort required combined with poor appetite meant it was becoming difficult to get through the recommended calories every day. With my weight at 9 stones it was important not to lose any more and having gone to the trouble and through the considerable discomfort (courtesy of the incompetent NHS nurses) of having the feeding tube (PEG) done, it seemed daft to die of malnutrition.
Having now mentioned the issues having the procedure, I feel compelled to tell some home truths about "our wonderful nurses". I am sure that there are many nurses who are caring, empathic, competent and completely committed to their profession, but I wish the media and politicians would acknowledge the fact that there is significant proportion who are uncaring, impatient and unfit for the job; nurses who think that the debt of honour they are owed for undertaking such a worthy vocation, negates any need to demonstrate any of the qualities of a decent nurse. I won't go into specifics but the experiences of me getting the PEG, Tracys post caesarian care, the indifference and lack of interest in caring for my dad before he died, along with many similar instances I know friends have experienced, illustrates that the NHS problems are not just ones of funding and management.

So, getting back to the original topic, the tube which has been sticking out of my stomach for the last year is now connected every evening to another tube, which via a small pump is connected to 750 calories worth of.... well, grey liquid... yum. It does take a lot of the pressure off eating but it is yet another piece of equipment and marks another stage of deterioration.
A more scary development has been episodes of shortness of breath. I have been coinciding any eating that I can do with the carer visits and although I am not eating huge amounts I was getting short of breath afterwards. It is caused by the stomach expanding and giving a weakened diaphram less room to move. Despite being well aware of the steady decline in respiritory test figures, reaching a point where I may soon need ventilation equipment, even if only on an intermittant basis for now, is difficult to come to terms with. It leaves no doubt about what's going on and without wanting to be over dramatic I can't help looking at it as being the beginning of the end game. Up to this point I have always been able to cushion the impact of increasing physical disability with the comfort of knowing my breathing was not too badly affected, but that is no longer the case. It forces me to think about what degree of intervention I will want. Hopefully the pace of deterioration will remain relatively slow but it is difficult to find anything positive at the moment.

Jealous Guy

I have never really done jealous. I was always convinced that 99 percent of life is in ones own hands. A phrase that has never failed to irritate me when something goes wrong for someone is "that's just my luck ". I know it is said without any self psycho-analysis but I just can't help judging them and concluding they have fatalistic approach to life. For the record there is now another phrase which instills equal irritation, so please refrain from saying "life's too short" in my company!

I was certainly never jealous for materialist reasons. Not because there weren't loads of people with a great deal more in this respect, but because I could accept that if I wanted the same it was solely down to me to put sufficient effort in to achieve it. I chose to achieve to the degree that I did and was very happy with the effort / achievement balance and I didn't want to have more enough to put the extra effort in. You could accuse me of underachievment or even laziness and to a degree it is true, but I was content and never jealous.

Unfortunately the 1 percent which you can't control can put a spanner in the works and for me it has proven to be a fucking big spanner.


And a couple of otherwise fairly ordinary experiences at the weekend,  by virtue of occuring on Fathers day made me realise how jealousy felt .

To start with, there was a fairly typical altercation between Daniel and Jake. Usual sort of thing; initial small verbal provocation, hugely disproportionate verbal retaliation, physical counter attack, full scale scrap. And this time for good measure, a Nintendo DS being thrown out of car on to driveway. I appreciate that this sequence of events is straight out the 9 year old boys instruction manual, between the chapter titled How to Make Farting Noises Using Almost Any Part of Your Body and the one titled The Most Inappropriate Behaviour For Any Occasion, but the Daniel / Jake conflicts far outnumber those of both other sibling combinations put together.

So I am sitting in the back of the car unable to intervene either physically or verbally. I always attempt the latter but it is just an incomprensible string of noises and other than maybe make them aware that their behaviour has not gone unnoticed, it does nothing to defuse the situation. Even if I have had my communication device with me, it would have been completely ineffective, you simply can't generate the sentences quickly enough or include the necessary intonation.

So I just have to watch as two of my sons tear chunks out of each other and tease one another mercilessly until one or both of them burst into tears. A few minutes later after being unloaded from the car, they are still going, but despite being mobile I am still not able to intervene.

We had meant to have been coming home to open Fathers Day cards and presents but I wasn't in the mood any more, and as I was already in the outdoor wheelchair I decided to go out by myself for a while. To a small degree I was angry with the boys behaviour, to a greater degree I was depressed by the continued animosity between them and my complete inability to help reconcile their differences.

So with an hour or so before the carer would arrive, I took myself down to the Hampton Court to watch the world go by on the river and this was the second fairly commonplace event that had more significance on Fathers Day.

I find myself with a lot of thinking time but for the sake of psychological self preservation I have learned what not to think about. This includes what I used to do and enjoy, what I previously had thought I would be doing in the future, what it will be like as my condition worsens and what I would do for the first week if I was cured. But the first and foremost thought to avoid is what I would have been doing with the boys if I didn't have MND, that one is a killer.

Sometimes you just can't avoid it. When they play football in the garden or playing on the Wii. When everyone else is singing Happy Birthday to them or when their Uncle dangles them upside down by their feet. Otherwise I'm pretty good at obeying the rules.

But last Sunday sitting by the river I slipped up. It was impossible not to notice dads and sons cycling, fishing, rowing and playing football. And it was impossible not to be jealous.
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Being Ripped Off

I was looking for an infrared remote control with a single large button which I could control with my foot in bed. It would simply operate the power to my TV. turn it off when I ready to sleep, on again in the morning. I thought about standard £10 programable remote control with all buttons programmed with the power ir so any contact with my foot should turn tv on or off, and I may well resort to that.
Anyway to the point, after much internet searching the only product was from disabled product specialist, GEWA. And it costs over £500, and you don't even get the buttons. It is essentially a £10 programable remote with 6 wires soldered to the circuit board and presented as 3.5mm sockets on a plastic case.
http://www.qedonline.co.uk/catalog/product_info.php?cPath=86&products_id=609

sum costs of parts, £20 or less


This is just one example of this shameful exploitation of disabled people and it costs us, charities and local authorities millions.
Hopefully a friend who is handy with a soldering iron will make me the same thing with a programable remote control and 3 nudge buttons from a fruit machine spares supplier.

other examples are these buttons at over £50
http://www.qedonline.co.uk/catalog/product_info.php?cPath=78&products_id=218

and this was a great example. An over bed table at Argos £65
http://www.argos.co.uk/static/Product/partNumber/8640314/c_1/1%7Ccategory_root%7CHealth+and+personal+care%7C14418350/c_2/3%7C15701120%7CMobility+aids%7C14418351/c_3/4%7Ccat_14418351%7CMobility+and+home+help%7C14418354.htm

same table at specialist disabled supplier £235
http://www.betterlifehealthcare.com/view_product.php?prodID=659

Raising Awareness for MND

A friend of mine, Liam Dwyer who also has MND has arranged an awareness campaign involving motorcyclists riding round the M25 with High Viz vests with his campaign message.

If you are a biker or you know bikers who would like to get involved

visit http://www.disabled4disabled.co.uk/m25.html

We have to get many more people aware of this disease, so please get involved

Ambitious?

I have just installed remote control software on my eyegaze computer so I can control all the pcs in the house and continue to provide technical support to Tracy !

Why don't governments provide more research funding

I was thinking about this recently. A common claim is there is insuficient financial incentive for drug companies to invest in MND research and this may be true. However, there is a significant incentive for governments to invest.

Without breaking it down the combination of disability benefits, unemployment benefits, carer costs, equipment and medical services costs, loss of income tax revenue the annual bill for me is at least £50k per annum. In the uk there are around 4000 sufferers. So based on a conservative estimate, that is £200 million per annum. In the States, based on the costs being similar, that equals £2 billion. So worldwide it might be £4 billion possibly


I appreciate that government health and social funding is dramatically different in the US so I would welcome any feedback on typical patient costs

I don't know how these figures compare with cancer care or MS or Parkinsons. Obviously we constitute a much smaller population and have relatively short duration of care but I suspect that proportionally it is an expensive illness. Now whilst financial investment is no guarantee of finding a cure, not investing IS a guaranteed way of never finding one. The example of cancer research demonstrates that progress is made when money is thrown in the right direction.



The prevelance of cancer at least creates massive public awareness and vast charitable funding which, although not resulting in a cure for all, has significantly improved the chance of survival. I don't believe MND awareness will ever reach the point that it will raise enough charitable funding to make an impact on the research required to find a cure and the past 20 years have proven that pharmaceutical companies aren't sufficiently motivated.



So if governments don't start changing their approach, billions will be spent every year for the foreseeable future. Even if this funding only resulted in finding a drug that halted progression, the extra cost burden created by ongoing care for current patients would be greatly offset by the longer term savings keeping future sufferers working and able.

Sitting Duck

I am sitting in the garden and a spider has decided to make a web between my computer and my head and I can't move enough to persuade it to stop!




Yesterday evening I sat and watched as a mosquito feasted on my leg.
 
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