New Picture

Gordon wanted a new picture of him on his blog - hence the change. The old picture is now at the bottom of the blog and was taken, I think, in 2013.

Life with MND - November 2015 - 11

Swallowing

Things have moved on fast regarding the restriction on what I can now swallow without being blitzed into a smooth paste with a liberal amount of natural yogurt, or if salad, then mayonnaise.

Breakfast is by far the meal that goes down well with a substantial plate of porridge made in the Scottish traditional manner. Then at around 1000hrs I’ve banana; slivers of a chocolate flake; a touch of muesli; and stewed apples - this also goes down well.

However when it comes to lunch it gets a wee bit hit or miss whether I’m ‘up for it or not’ - fortunately most days I’ve got cereal/yogurt, salad/mayonnaise, or home made soup for a main course and if I’m ‘up for’ a pudding then it’s usually a milk based one, and that’s my last meal of the day. I take extra supplements of fortified nutrients through PEG by syringe to compensate for the missing of a 1700hrs meal.

It’s difficult to get head around

How from tips of fingers to the points of my toes I’ve still got sensitive feelings to touch, and with no signs of deformities and yet they are so useless. The legs, forearms, and shoulders are a shadow of what they once were with the now lack of muscle content. But for parts of the body that served me faithfully for some 66 years without any mayor problems, and bearing in mind about 40 of those years, they have been involved in hard manual work.

Jean’s diarrhoea and sickness since Friday the 14^th

 It’s now at the end of the month, the sickness was quickly stopped by an injection, but on the first night she was sick 4 times that I heard and to hear her wretch was horrible for me not being able to put a comforting and sympathetic arm round her shoulder to show she was not alone in her trauma.

She has ulcerative colitis on top of the diarrhoea, and at the end of the month still not regulated.

Plus having diabetes controlling her blood sugar can be difficult when ill.

Life with MND - October 2015 - 10

Giving up things outwith my control

To avoid frustration, agitation, and ultimately turning to panic in a still alert mind - believe me, this is not a road any sane person wants to go down!!

To expand on the above comment - it’s not life I’ve gave up on, but on daily things that happen to me now as I get more disabled that can very easily fester and become monumental.

Use of the ‘Lightwriter’ 

With the ongoing disablement I really miss the machine, which turns the printed word into speech for the quick response to every day conversation.

Whether the Speech Therapist may be able to solve the problem is in the lap of modern technology and the dedication of those involved in my welfare.

Upped fluid intake

We decided to up fluid intake through stomach via PEG from 2litre to 3litre, because of fairly frequent bladder infections resulting in having to change the catheter on each occasion.

Adjustments to bed position

Over the past 6 weeks I get carers when putting me to bed to put me hard to the left hand side of the bed with only enough room for a pillow between the safety rail and my body.

I now line this up with the open curtain - and to my satisfaction.

I’ve never had to call the carer in attendance - unless they come in on a voluntary basis to check up on me. This makes me feel good having not disturbed the carer, specially when Jean is on duty.

Regarding drawing attention of the carer on night duty and the deterioration of my voice, it’s difficult to draw their attention with my now feeble audible screech.

Marie Curie nurses

I can’t say how much we appreciate the overnight attention they give us.

Life with MND - October 2015 - 9

Grinding of teeth and swallowing

This is a recent change where, if swallowing saliva or food it rolls around the mouth before the brain actually conveys the message of movement to  swallow. Then before swallow I grind my teeth so hard I’m in fear of chipping them. I feel it’s just another adjustment I’ve to solve in ongoing problems related to MND.

O n the 6^th  October  - I got the results of bloods taken regarding my cholesterol level it was 4.5 - very satisfactory. I got community nurse on a ‘home visit’ to take my BP, it was 138 over 80, again for my age - fine! One must remember that since my weeks stay in hospital in March this year I was taken off all cholesterol and HBP medication.

On 10^th October - suddenly overnight I lost the ability to operate the computer, because of a non-functional right shoulder which severely restricts the use of the mouse on the specially adapted keyboard screen. As this is now my only way of communication - in that, about a month ago I found it very difficult to use the ‘Lightwriter’ (which turns the typed word into speech). However with daily persistence and a stubborn nature on the 13^th I was able to get the shoulder reasonably supple so I’m ‘back in business’ with my typing. 

It was such a shock to lose my only source of conversing with Jean regarding my daily requests/remarks etc and of course my blog. Like all professional chefs on TV they are often heard to say ‘this is one I prepared earlier’ so like the chefs, I intend to write my final farewell blog to Allison, our daughter, to post on when I’m no longer able to type.

Daily tiredness because of MND - It is most noticeable now as MND trundles on, I definitely get more tired as the day  goes on - so any lengthy and concentrated typing, such as my blog, has to be done in the morning. 

Life with MND - 2015 - 7

Changes in my lifetime- in my lifespan- born in February 1937 I’ve seen many changes, so let’s reminisce a wee bit to add variation to the story.

Primary school days

I went to the local primary school at Mosstowie. We walked the mile, come hail or shine twice a day- on the way home we would often take a neep (turnip) from the farmer’s field- (this was not deemed as stealing in our era although it could be now with the present price of turnips) hit it on the end of a fence post to break into it so we could partially satisfy our hunger until we got home.

Classes would go and pick wild brambles near the school and the kitchen, which prepared school dinners would then make jam and the classes were asked to bring in slices of dry bread and staff would spread on the jam for our morning break.

Our headmaster… MrScrimigour when pupils were not paying attention he had the art of flickering a piece of chalk accurately, forces, and more than often hit the individual intended- imagine if a teacher did that now with present day school policy!

The girls and boys toilets were outside the main building and were very basic- I remember around the mid-forties we had 6 weeks off school as the toilets were frozen. 

My secondary school was Elgin Academy, which I left at the age of 16.

Mid to late teens

Living 3 miles from Elgin my top priority was purchasing a bicycle - it was a Raleigh costing £16,  which was essential for getting the 3 miles to Elgin for work and socialising. 

I got a temporary job, at a commercial market garden nursery. When after a month I was asked if I’d like to serve an apprenticeship in the greenhouse side of the business. As a point of interest the wages for a five and a half day week was £2-50.

Little did I think at the time it would lead me into many different avenues in horticulture for a most happy and satisfying career which lasted for over 50 years.

At 18 I got summoned to do my 2 years national service- the weekly wage was 29 shillings with a compulsory payment of 9 shillings for your parents.

For a ‘country lad’ who had never been further south than Balerno near Edinburgh to see my Grannie, it was a daunting thought. However it was a great experience over the 2 years and one that I feel could benefit present 18 year olds, although in 1955 when we did our ‘square bashing’ the drill instructors could really humiliate you in front of the whole squad which may not be tolerated in present services policy. I was demobbed from the RAF in July 1957 and went back to my old job of working at the nursery.

To be continued if nothing of interest to report on MND. 

Living with MND - 2015 - 6

Am I becoming a recluse?

It’s just I haven’t been outside this year. OK, the weather hasn’t always been conducive for me, as like lots of reptiles I need warmer temperatures before I venture outside - otherwise I just stiffen up and can’t move. Plus, now the hand that operates the motorised chair no longer has the finer motor skills to manipulate or operate the ‘joystick’ that takes me up the rather steep ramp into our adapted deck - mind, I could always get a battery winch fitted.

If the truth be known, I’ve no inclination for going out - whether it’s the body slowly shutting down, I don't know, but I just feel the effort and bother is not worth it.

Procedure for getting me into bed 

This precise and detailed procedure is so important. First, with very restricted movement for the 10 hrs spent in bed it’s certainly in my interests to get as happy and reasonably comfortable as possible before the carers leave. Plus, if I’m comfortable it lessens the chance of having to call the carer on duty during the night. If I don’t call them they will usually pay a voluntary visit during the night, just to check that I’m OK.

But time is changing things - a phrase I’m sure will be used often in the future! In July was a month where I’d no need to call the carer, whereas by mid-August I’d developed a gnawing core pain in my left ankle and knee joints. Exercising in bed certainly helps relieve the pain and I’ve started taking 2 ibuprofen tablets before bed which seems to have solved the problem meantime.

The Blog 

It’s amazing the capabilities of the computer and internet. On the 25/8/15, our page viewings were 3,596,  but more to the point this number includes world wide coverage including the following countries - 

United Kingdom -1806 views

United States - 892 views

France - 217

Russia - 193

Ukraine - 98

Australia - 48

Germany - 38

Canada - 31

Netherlands - 18

Romania - 17

A big thank you to my niece Carol who ‘setup’ the blog – without her help and enthusiasm it wouldn’t have happened.

World finance regarding China

As August draws to an end, the finances of the world is in turmoil, all because China has taken a rapid downturn in it’s sudden growth over the past 2 years. This leads me on to a story of some 30/40 years ago I must have read it, or heard it somewhere - that the world is like baking in an oven where countries become the items in the oven. The European nations were too white and under cooked - all the darker skinned nations were over cooked as they were too dark - whilst the Chinese were cooked to perfection by their skin colour and would ultimately rule the world. 

So in some ways it’s come to fruition - we’ll watch with interest for future developments. 

Note from Carol - I am happy to contribute what I can to this blog - but a big thanks needs to go to all our readers -- please do try and tell your friends and family about this blog - the more readers the better - I am quite sure we would all love for the blog to continue for as long as possible, so keep reading.