Life with MND - update 2

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Fluid intake through PEG

For past month or so my fluid level has been just over 2 litres, which I’m happy with, - this does not include soups, yogurts and the likes.

Eating through mouth 

 I’m always looking forward to a good breakfast of a plate of porridge made with oatmeal and plain yogurt followed by cereal of ‘special K’ bran flakes and raisins. Then at around ten I’ve a banana, stewed apples, muesli, and small piece of chocolate. Lunch is around 1200hrs and normally consists of either soup or salad and a pudding. Jean ensures that all my meals are of a texture and consistency easy for me to swallow.  Lunch is my last meal of the day as about a year ago I was bothered with reflux in the evenings and decided to stop the meal at 1700hrs.

As far back 2003 when my tongue lost the ability to get the true taste of most meals I eat are pretty tasteless—salads are ‘spiced up’ if accompanied with a dressing of chutney—sweet onion (my favourite), not too hot chilly, or if any other meals a curry sauce/ hp, sauce. Oddly enough I still get the true taste of bananas.

Whilst chewing I have a tendency to bite my lower front lip.

Life expectancy

I always thought I’d die of respiratory failure, but being a creature of habit that monitors him self regularly, there has been a slight deteriorated in breathing over the past two years.

I was in the hospital for just over a week in the spring time and when I got home they had taken me off all blood pressure and cholesterol medication—so I presume the heart is sound! Then the MND area specialist visited and took my oxygen level and heart rate — the former registered 96 and for a person of 78 was quite acceptable and heart rate was 73. So if nothing unforeseen happens I may well last into my eighties — I feel it’s a daunting challenge for both Jean and me.

The things I really miss especially whilst in bed

On the whole, it’s simply the lack of movement, and isolation - when the carers put me to bed I’m fussy to  how I want positioned – after all I’m the one who has to spend ten hours in bed. It’s a combination of strategically placed pillows cocooning the body. After the carers have gone Jean does the final tweak of pillows and arms/hands. It would be so nice in the morning, after an acceptable nights sleep to stretch; scratch any body parts/head, or rub eyes — but I don’t have the ability to do any of the things that normal humans do automatically.
This is where my basic knowledge of yoga comes to the fore whereby (if persistent enough) I can block out the urges and concentrate and transfer the mind to more positive and pleasant thoughts.