Monday, February 8th 2010

Busy day

I had one appointment after another today. First up was Sharon, a urology specialist with a company called Fittleworth who specialise in the home delivery of continence products. Some weeks ago I flagged up as a priority to my visiting district nurse that it was getting increasingly difficult to get up from the bed in the middle of the night if I needed to visit the bathroom. In the early hours of this morning for instance it took several attempts before I was finally able to sit upright on the edge of my bed. With each successive failed attempt essential energy is lost and I start to worry about the embarrassment and consequences should I fail to get up. The way my strength is draining away lately it’s not going to be long before getting off the bed unassisted becomes impossible. So the purpose of today’s meeting was to discuss a continence product that would remove what has become a very traumatic experience (and replace it with one that chips away at my dignity even further). I suppose some people might say just have a live-in carer or have somebody doing waking nights but I am very uncomfortable having strangers in my house all night long whilst I am asleep. Besides, it seems overkill at this time to have someone in the house all night long if I’m only going to call on their help only once or maybe twice. Of course if my breathing drops dangerously low and I choose to have non-invasive ventilation then I would have no choice but to have somebody on hand all through the night. But for now I’m just looking for a solution to a particular problem so today we looked at something called a Conveen Optima urisheath. Basically it’s a two part system: a transparent sheath that slips over the end of a man’s you-know-what, and a collection bag with an attached tube that connects to the nozzle on the end of the sheath. And that’s really all there is to it. Because the system is non-invasive (unlike a catheter) there is no chance of infection. I’ve agreed to give it a go so Sharon has left enough supplies for a one-week night trial. I say ‘night’ because if it was worn during the day (and it can be for up to 24 hours) then a smaller collection bag is required. But for now the main problem to overcome is night time. The things you have to go through with this disease!

Lara, my palliative care doctor dropped in at short notice this afternoon in response to my e-mailing her about my reduced appetite, and the fact that she’d heard about my difficulties swallowing last week. The subject of PEG was discussed and whether I would want to have some suitability tests done. PEG as I’ve mentioned before is time sensitive and dependent on respiratory performance which is one of the reasons why lung function tests are carried out at regular intervals early on in the disease so that it can be determined when the best time for intervention is. I was already at the bottom end of safety for this procedure back in September last year and since then my breathing has deteriorated slightly so it would probably be risky or inadvisable. To be honest it’s a near impossible decision to make. PEG is a solution but it is not necessarily the right one for everyone and it doesn’t come without its own problems. Infections can be a real problem as it is an invasive procedure and just because food is bypassing the throat it is not a guarantee of being able to maintain your weight. People can and do still lose weight even with a PEG. Of course the advantages are that it can make mealtimes less traumatic and remove the fear of choking or indeed of starving to death. It can also be a way of delivering medication. But the flipside is that the longer a PEG keeps the body going, the more time MND has to spread throughout your muscular systems. I think for me the real horror of this disease would be lying on a bed totally paralysed and unable to speak, communicating only by blinking, and being dependent on the various tubes attached to me for air, food and waste. Like I say it’s a very difficult decision and each person who has to make this journey will have to reach their own decision based on their own particular circumstances. There is no correct answer.

Dan, my local councillor, dropped in late this afternoon to give me an update after his meeting with the planning case officer. I’ve now been presented with a couple of options with a far greater chance of success than I had previously been told. The most promising seems to be to resubmit the first application for the side extension as this could then be processed under delegated powers of authority with a committee. Unfortunately time is still an issue but I’m currently drafting a letter to my OT with some suggestions on how we can run a few things in parallel. I also got confirmation today via my own investigations that at the time of the first application the planning department were not made aware that there was a progressive disability with a real health need driving the request. It staggers me that the company supposedly set up to handle adaptations for disabled people would not communicate this information and stress its importance.

Steve from Possum called lunchtime to do a one-year service on my environmental control system. Whilst he was here I took the liberty to ask him if he could add my new digital photo frame to the little black box of tricks I have on my desk by capturing the infrared code of the remote control unit. So thanks once again Jason and Chery for the lovely Christmas present which I can now enjoy more frequently and not have to keep asking someone to switch on for me. The pictures on it look great by the way.


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