Life with MND - update 2

continued ....

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.

An update from Gordon for 2015

Living with MND-2015

Well this is my first attempt at compiling my story this year; suddenly in May I seem to have rallied regarding typing and use of the ‘lightwriter’

To date this has been a dark and challenging year with the left arm/hand having to be lifted and placed by someone and the right arm/hand also needs assistance to reach my rib cage. I don’t know why after four months of further disablement I should get this positive mind set, but long may it continue.

Catheter

I’ve had numerous catheters fitted but all have had the problem of bypassing the tube until the most recent one fitted, which seems to be working fairly consistently: fingers crossed it goes on working!

Jean

Has finally been relieved of putting me to bed on her own. Now when carers come in at around 8-30 in the evening to change me into pyjamas they put me to bed. It means an extra two hours in it, but if that’s what it takes to ease Jean’s work load, then so be it. I’m virtually in one position until the carers come in at 0700hrs the following morning. It can be a long night sometimes, but overall if I get comfortable when carers put me to bed, my sleep pattern is quite acceptable.

Euthanasia

In an earlier installment of my story I said if ever I felt that my life had reached what I considered unbearable I’d opt for euthanasia.  In the past year my disablement is now so severe that there is no way I could function without constant care. Make no mistake, the deterioration since diagnosed in 2005, has been ‘a long haul’- and am prepared for death whenever, but I’ve a stronger urge to live.   

I’ve accepted, and learnt to cope with what I can’t change, - so could it be that there are no conditions in which a person cannot become accustomed to - or nothing befalls a person what is in their nature to endure. 

Carers overall

Jean is my main carer, she’s on call 24/7 - although there is a person who comes in for sleepovers two nights a week and a Marie Currie nurse who spends one night to give Jean an undisturbed sleep. Unless anything unforeseen happens, normally, I’d call the carer once to change my position a night.

Communication in bed

I’m at my most isolated and vulnerable- with my only source of communication with carer upstairs- they have a baby alarm close bye. So if I can muster a feeble screech- hoping they hear me. I can’t position and operate the ‘lightwriter’ in bed - plus no specks on to see letters!

My communication frustration with carers – especially Jean

Yeah, having been married for over 53 years it’s very hard for us both, I would say it’s harder for Jean to cope with my condition and as I get more disabled my needs on Jean’s time more necessary.  We both have different ways of dealing with my illness - me it’s been loss of ability to communicate with all carers, but especially Jean on these occasions when I get frustrated which can very easily lead into agitation which can then very easily turn into uncontrollable shaking of the body.  Called CLONUS – ‘a violent confused motion of involuntary rhythmic muscular contractions and relaxations caused by neurological conditions.

Then of course I’ve the Councils very capable team of carers that tend to my ablutions, showering, toileting, dressing/undressing, and getting me up and out of bed. I can get up to twelve regular carers all with their caring qualities, and characters. But all are dedicated making me feel at ease and I’m sure they contribute a long way for my still zest for life.

to be continued......

Note from the techie - Gordon is finding the updating of his blog very difficult, but he is still determined to do it. He asked me recently how many hits he had to his blog, he smiled when I told him. He is still tickled to know his musings are being read across the world, so please do continue to check his blog - each hit helps keep him going. If you cannot keep checking back, please do add your email address to the 'follow me by email' box on the main blg screen, and you will receive an email when the blog is updated. Regards

An update

Gordon has not been too well recently, with a brief spell in Hospital. He is home now and seems to be improving. I am not sure if Gordon will update the blog too often now, but dear readers, please do check back or better still add your email address to the link on the blog and you will be updated automatically.

I will keep you all posted with what information I can.

thanks for your support

A website to check out - no relation!

Just read about this website - please do have a look, and donate if you can.

www.gordonsfightback.com

A Program on Channel 5

Just a heads up to those readers who may be interested.

There is a documentary on Channel 5 (UK TV Channel) on Wednesday 11 March at 7pm. It is about a man with Motor neurone (not Gordon) revealing the effects of the condition on his life. I do not know how good the program is, but thought I would let this blog readers know.
If you cannot catch it live, it may be on Demand 5, the web replay service.

Life with MND - December 2014

1^st took collection of a new air ripple mattress – a strange feeling – not happy with it, but decided to try it for the next week – and by the end of the seven days I was getting an average of five hours sound sleep per night.

On the 11^th Ross, our son, took us up to wheelchair care in Inverness to see a specialist rep, who dealt in a specific neck brace that may help keep my head upright – it went well and so one was ordered.

12^th had a home visit from our Dentist for  a check up – my tilting chair worked very well to allow him to examine my teeth – no need for further work needed at this time.

15/17^{th self} employed-carer in for sleepovers, so Jean can have 2 nights  a week undisturbed sleep, although since catheter fitted there is little need now for getting anyone up. 

On 18th Jean had to phone the 24hr care Doctor, I had problems in passing urine

Doctor decided to get nurse to fit catheter, - and 2300hrs it was fitted – it was great relief since last time I had managed to empty bladder had been early morning.

Christmas is a lovely time to meet up with all the family and indulge in lovely food.

This year has been a time of comprise and change in the early months, but towards the end it’s really been a time when I’ve had to rely on others for the simplest of tasks.

Very reluctantly this may well be the end of my blog as right hand and arm deteriorates to the extent that this page has taken over a week to type up.

New picture

Here is a picture of Jean and Gordon taken at Christmas and still looking good!