Sunday, May 8th 2011


It’s been quite a busy week for appointments with doctors and district nurses among others dropping in. But they have not all been medically related, some of them have brought improvements to my quality of life. Early in the week for example Paul from Possum called to install an intercom/door release system in my bedroom which means I can now answer the front door even when lying in bed. I’ve also been given an extension microphone for my hands-free phone. It’s a bit like those ones you see people wearing on their shirt when being interviewed. So now when I’m in bed it can be clipped to the edge of the duvet near my mouth so that it is easier for me with my weakened voice to make and receive phone calls. And in readiness for the anticipated hot summer weather I got Paul to program the functions of my new floor mounted oscillating fan into the Possum Primo. I now have the ability to alter the speed and direction of a large fan directly from my bed or wheelchair. It’s quite impressive actually and very useful for those of us with disability. I never realised you could get remote-controlled fans until I found one listed in the Argos catalogue. I’m also hoping it will bring benefits with my breathing.

Wheelchair Services called later in the week and have fitted some gel sheeting inside the seat cushion and back rest of my wheelchair. Hopefully it will allow me to spend more time in the wheelchair without the fear of developing pressure sores. Early signs are good so fingers crossed that I won’t need to spend such long periods of time resting on the bed once again.

I’ll sign off with a little bit of blog trivia. You are reading the 200th posting I have made to my blog since I started it in 2008! Back then I never imagined I would get this far and so soon! Thank you to everyone for your kind comments and words of support.


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Friday, May 6th 2011

Thoughts on NIV

I had a follow-up meeting with Lara, my palliative care doctor yesterday afternoon, to discuss the pros and cons of NIV (non-invasive ventilation) and the possibility of trialling it. It’s something that I had been giving some thought to recently as my breathing had shown further signs of deterioration. A couple of sleepless nights, slow to fully wake up, and a general feeling of weariness throughout the day plus a couple of mild headaches in the mornings were all indicators that my breathing muscles are not as efficient as they used to be. I wanted to explore what options I had and how they would impact both my lifestyle and my care package.

In tests NIV has been shown to improve quality of life by assisting the weakened breathing muscles so that more oxygen can be drawn in and more carbon dioxide can be expelled without leaving a person feeling so tired. Used overnight this can help with improving the quality of sleep so that you wake with more energy and without the headaches. Studies have revealed that NIV can extend life by months although it needs to be appreciated that it will not in any way slow down the progression of MND; it just makes the remaining life a little more comfortable.

But NIV isn’t suitable for everyone. Some people cannot tolerate wearing a mask especially for prolonged periods. I must admit considering all the problems I’ve had with skin irritation one of my concerns was definitely whether I will be able to tolerate something pressed firmly against my skin for so long without the ability to reposition it myself. So to get an idea of what it would feel like Lara had brought with her a mask for me to try. The one I was shown fully enclosed the nose and mouth and featured a cushion seal all around the edge to prevent air escaping. The whole thing is held firmly in place with straps that go around the back of the head. Without a machine to try it out on I could only gauge what it felt like and how comfortable it was. It did feel rather claustrophobic and after a short time it was already beginning to irritate me. Now I appreciate the fact that there are various kinds of masks which could be assessed for suitability so one of those might be better for me.

At this stage I have merely been exploring possibilities. If I were to go ahead with a trial I would probably need to go down to the respiratory centre at Southampton for some blood gas tests and the fitting of a mask etc. Alternatively because of the distance involved it might be possible for me to have the assessment done at my local hospice in conjunction with a team from the general hospital which fortunately is in close proximity. They seem to think I would be away from home for a couple of days or so whilst they tweak the settings.

Like just about everything in life there are pros and cons to using NIV. At the moment my body is somehow compensating for the gradual decline in breathing efficiency. If however I were to start using NIV my body would become dependent on it and I would lose the ability to compensate. This could lead to a situation whereby removal of the mask could lead to panic attacks because of the sudden difference in air pressure. How quickly I would become dependent on it is hard to say and it varies from person to person. I suppose initially the idea would be to use it only for a few hours a day, perhaps during the afternoon when I’m resting. But the question is how long would the benefits last before wearing down? If I quickly developed a dependence on it and started using it throughout the night then that would bring with it other factors to consider such as noise levels of the machine and requiring a carer to be on hand all the time which is something I don’t currently have. If it then progressed to wearing it during the day then that would introduce more problems. Masks that cover both the nose and mouth would make it impossible to operate the speech recognition on my computer. I would also lose the ability to independently drink from my wheelchair mounted drink holder and would of course have to manage without it whilst eating and drinking. Showering and shaving would also no doubt present their own problems. And finally, would wearing a mask isolate me? How difficult would it be to go out in the wheelchair? Apparently there are portable versions of the pump equipment but I would feel very conspicuous being pushed down the road hooked up to breathing apparatus, as well as having concerns about how long the batteries last.

So having had the benefit of a couple of discussions and a lot of thinking on my part I have decided for the foreseeable future to continue on as I am. Fortunately there doesn’t appear to be a window of time in which I must choose (unlike PEG) so I can revisit it later if I choose. But at the moment I am very wary of losing this compensating ability that I have. I would not want to rapidly develop a dependence on NIV because then I would simply have solved one set of problems and created a whole host of new ones which would also impact my quality of life. At the moment I can tolerate the occasional mild headache or feeling tired so as long as it doesn’t stop me from sleeping I will live with it. Instead I still have a few things that I can try to help ensure I can breathe easier. One thing I have noticed lately is that it feels easier to breathe outside especially when there is a light breeze. I mentioned this to my doctor and she said that even a fan has been found to have beneficial effects so this is something I plan to explore. In addition I still have considerable adjustment on my profiling bed so that my head and chest are elevated thus allowing gravity to assist more. Let’s see what effect these have over the coming weeks.


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