Life with MND - September 2014

On the first we got first ‘double up’ in mornings with council carers relieving Jean of the commitment - again a welcome break for Jean.

 We had a visit from the Dietician - nothing new to report other than the fact, I always look forward to and thoroughly enjoy breakfast and lunch. However, this month found the usual tea time meal was causing reflux throughout the evenings, so I’ve had to switch to lighter meals, like poached egg on toast, or one of my favourites, porridge made with oat meal - seems to have solved the problem meantime.

On the eighth we again had weigh in at Forres hospital – really surprised when nurse said 68k, considering when last weighed on May 13^th I was 63kg. To put on 5kg’s with continual ongoing muscle wastage and no obvious signs of where my body has put it  on - a surprise.

Had Wilma, the self-employed carer, in for a week of continuous attention whilst Jean had her respite break at our time share in Aviemore. Glad to say, no mishaps during the week and a relaxing time for Jean and I - totally at ease with Wilma, who over the year has became accustomed to my ways and needs.

Although, MND is a truly ‘hellish disease with no known cure’ - oddly enough, for me, it has an ‘up side’ in that, it has opened my mind to a totally different set of thoughts, and priorities, which has made for a more understanding and tolerant individual seeing myself, in this alien world, heading I suspect, for total reliance on others as the disabilities trundles ever on.

It’s so hard to get my head round why my hands, which have served me faithfully for over 70 years and have always responded to my thoughts and needs, won’t work now - without  any signs of deformities and normal sensations to the tip of the finger.

Finally, in this installment of my story it would be remiss of me not to mention the referendum (for Scottish independence), so after some serious consideration and listening to views and reading reviews, I’ll just say I ended up voting with my heart and not my head. But I will die content that I put a cross in the right place for me.

Life with MND - August 2014

On the fifth we had a social worker visit to fill in an assessment questionnaire to see the degree my disablement has progressed, and so determine the extent of future care I’d receive from Moray council.

Then on the 13^th we had our first ‘double up’ of evening council carers to relieve Jean of her role of being the second carer. Whether it was because of the questionnaire we don’t know, but whatever, it’s been a welcome break for Jean.

On 29^th Jean had to call in Doctor, because of phlegm and mucus coming down nose ultimately turning red, which to us could have been blood. The GP sounded me and found that my right lung was a bit congested, whilst left one was clear, so put me on a week of anti-biotics.   

For about the past year because of muscle wastage in my right side and neck I now constantly lean to the right whilst in my chair. When in bed I’ve to spend the whole time on my right side and usually by the morning I’m making gargling noises, because of phlegm/mucus and not having the ability to cough, unless its really extreme, so it doesn’t surprise me that right lung is infected.

Other most noticeable deterioration's now is the left shoulder/arm. It is useless without assistance to move it where I want it placed in a particular spot, although grip is still good, but for the finer motor skills again, it is useless. Whilst my ‘trusty’ right shoulder/arm, I feel, is quickly reaching a state similar to the left. A frightening thought that will rob me of many things I can presently manage with a struggle - ah well! I suppose that’s the nature of the long drawn-out illness that’s been allotted to me.

I still strongly resist having to give up my ‘control freakish nature’ and feel it may be with me to the end of my life - as no doubt Jean would quickly verify!

‘The end of my life' above leads me neatly onto my thoughts on religion and my ultimate death.  As disablement creeps on and I get more reliant on others, I continually review my mind set and now consider myself with the opposite capabilities of a six month old baby – the difference being it has an open mind with a real thirst for learning and of course muscles that are getting stronger by the day, also a blank canvas of life’s unknown journey ahead.

 Whilst I still have an inquiring active mind, although now a ‘creature of habit’ one. I have reached the twilight years of life, plus with constant ongoing muscle wastage, and weakening daily my future is not looking too bright.

Being a realistic and practical individual I’ve told Jean the arrangements I’d like put in place for my funeral – no,  I’m not being morbid,  but as a controlled person I’d like to go out as I’ve done throughout my life.

Never having been a ‘church goer’, I’ve opted for a humanist to conduct the service followed by cremation.

To touch on my thoughts, I can’t imagine a happy contented life without a strong faith or belief – mine happens to be of a fatalistic belief. A big majority of the population is however, of a religious nature, of many faiths.  I tend to see strong faiths/or beliefs as a crutch to help one through life. Regarding religion; I’ve always said that when out in the countryside, I’m nearer my creator than any church that I’ve ever been in. Yet feel I abide by the Ten Commandments pretty well. However, I feel that when dead there is no afterlife. 

I once read a book, where the author was saying on death our soul meets up with those already deceased including parents and close relations. I read the book three times, as it was such a lovely comforting thought, but reluctantly my realistic mind set took over, so when I die it will be a lovely surprise if I see my parents and brothers again.

Regarding cremation, having spent 5o years in horticulture I feel I’m ‘a true son of the soil’ and to be returned as fertiliser for one of my favourite Scottish trees - the birch, in the form of potash from my ashes, seems very appropriate .

Although readers may think this part of my story seems all gloom and doom about funerals, dying, and death - not so. The days that euthanasia crosses my mind, thankfully, are still very few and far between as I still see life is a challenge.   

Unless something unforeseen happens with my health, other than MND,  it seems fairly good. I’ve always thought respiratory failure would be my demise, so I’ve tried to prepare and train the mind - ‘I may well be here for the long haul’.

Life with MND - July 2014

Unless something dramatic is happening regarding my illness I thought I’d tell readers of what I’m sure formed my mind set, personality and how  I’m  coping  with the drawn out type of  MND that I  appear to have.  

Contentment 

My description of the word is the inner satisfaction accrued over a lifetime.’ It comes to one who learns to bear  what they cannot change, or one of Mum’s favourite sayings ‘what’s in front of you will not go past you’. Having  always had a strong fatalistic belief helps get my head round this.  Now that I’ve explained contentment, lets get on with my childhood. 

I’m the youngest of five brothers:- Ian, Willie, Bob then our parents had a ten year gap before having Allan, and me. 

Very sadly, Allan and me lost our three older brothers who all died well into their eighties, the five of us got on so well together!.

M um would have been 38 and Dad 37 when I was born and I remember Dad as a quite hard worker, who as a farm worker was out during summer months doing general farm duties, but in winter months until early spring, when beef cattle were indoors, he fed and tended them 7 days a week including no break over the festive period.  I’m sure the older brothers would have different tales to tell on his younger years.

Dad was the bread winner whilst Mum was always there ‘for her boys’ and tending all our needs, with Dad taking top priority over us all (this priority was entirely Mum’s attitude to their marriage, as Dad was no way demanding, he just went with the flow’).

What definitely shaped my personality was a speech impediment, I suspect hereditary, from Dad’s similar affliction. Mine was not so much a stammer as a halt when asked a specific question, such as my name, and my voice would just freeze.

To me, certainly in my teenage years, there were two options, be bold and brash, or avoid being in the limelight of those in authority which may ask me specific questions - I was definitely the latter! Yet, this is where my challenging nature came to the fore. 

 I went to a speech therapist in the early seventies and she was surprised at how I could disguise my impediment - consequently saying there was very little she could do to improve my speech, but thanked me for the learning experience I’d given her.

In an earlier comment of my story I mention that I like a challenge and when I felt relaxed with the situation I’d move on to another challenge - as there were few days in my lifetime when my impediment didn’t cross my mind in some form or other. Until my very early twenties I was very self conscious of my speech defect, but then began to see it a part of me and something I’d to live with, accept as a challenge, and try to overcome it, or discreetly disguise it.

The earliest I can recall was at primary school if told to stand up in class and read  in  front  of the  class. Secondary school went ok with no real embarrassing situations arising that I can recall. On leaving school I got a job at a commercial market garden – that also went well.

In 1955 I was ‘called up’ to do my national service for two years in the RAF. This for ‘a country lad’ who had never been outside Scotland was daunting, but a great adventure, in fact, I always say over the two years it was one of my  memorable lifetime experience and say it’s a disciplined military environment  that all eighteen year old's would benefit from.

The only downside was in the mandatory eight weeks ‘square bashing’ where all intakes for that period congregated in a large hanger to get paid. This was done alphabetically, so as my was McKenzie I’d a long wait of creeping nearer the front and shouting out Sir, and last three identity numbers- mine was 141- the anticipation and negative thoughts that had built up after an hour of waiting often led to panic with speech and more than often than not had to call my name a second time- with their unsympathetic and aggressive manner of having to call my name again was a horrible humiliating experience.
However, I forged ahead with my tenacious and challenging nature. From being in charge of a garden nursery complex to working in a garden centre where I’d to constantly converse with the public. Then I applied for a position, and got it, as Head Groundsman in the civil service at a fully operational air station — it involved 2,000 acres between airfield and domestic areas. Again, I’ve had a fear of using the phone with my speech, but in 1969 I opted to accept the position of ‘area Grounds Maintenance Officer’ for the north of Scotland based in Aberdeen, which involved lots of phoning and travelling.

And finally in my early sixties I joined a collection of entertainers where my participation was singing, playing mouth organ, jews harp, reciting monologues, and the occasional joke.  My time in the band was so enjoyable and fun times, but  was cut  short in 2003 when MND got to the stage that I had to, very reluctantly, give it up. We mainly performed for old folk’s homes and the like, so under no pressure. It was a great way to end my speech impediment being on stage with an appreciative audience. 

My motto throughout life is at the end ‘never regret the things you never done’ inevitably, there’s been a few wrong turnings we’ve taken in our lifetime, but as the song says ‘regrets we’ve had a few, but then again to few to mention’.

So, in spite of the speech defect and this prolonged ‘hellish disease’ of MND I’ve been inflicted with, Frustration has often crept in at not being able to express myself, but I’ve accepted my lot, and never thought ‘why me’— maybe there’s ‘nothing befalls one except it’s in their nature to endure’

Overall I embrace all that’s good in my life still-- like the 24/7 care provided by Jean who now has to do silly wee things, but to me important—like switching on my computer and TV. Also the council’s dedicated team of carers which gives Jean a welcome break - plus with no pain this is indeed a blessing! I could go on about quality of life items, but won’t.

Life with MND - June 2014

Where has this year gone in that, we are already into the sixth month? Bystanders may well think my time drags, not so. As disablement of arms and hands now moves quickly on, all my time is involved in trying to maintaining my communications abilities. I’ve already lost the finer motor skills to text and the effort/concentration and sloth like pace whilst typing is becoming a real ‘labour of love and determination’, but a good ‘character building exercise’.

You know if you’ve got an itch, you automatically go to the area and scratch it! With the deterioration of arms and shoulders, I no longer have the capability to scratch any itchy area. In bed is worst, when I’m  isolated, and that’s when reading  the book ‘mind over  matter ‘ comes into It’s own.  In the mid-sixties this book by Harry Lorraine became my bible whilst a ‘ground maintenance officer’’ in the civil service. It taught me to diversify the mind away from ongoing problems. I look at it as a mild form of medication and yoga, but whatever, it’s a blessing when I’ve an itch and I’ve usually the capability to ignore it.

Jean and I both agree that the maximum time I can now be left on my own is two hours, so we hired  a ex-council carer, who has since gone self-employed for a ‘trial run’’ for 4 hrs – it worked out well!  So we arranged for Jean to have a long overdue break at our daughters for 3 days. We both benefited from the break. Jean, for a welcome rest from my constant needs and me for totally out of my usual comfort zone (including sleepovers with a stranger in attendance upstairs, although my nights are usually pretty acceptable other than I usually need toileting around 0500hrs) I suppose, on reflection, the first day regarding communication was hard going for both of us, but ‘hey ho’ by the second day we had ironed out many of our misunderstandings. Other noticeable facilities lost, or changed this month is the ability to stand at the toilet with the aid of two parallel bars and carers help. This was far quicker than the now diversification to the mini lift which needs a double up (2 carers). I suspect this is for insurances purposes by the council, as Jean constantly uses it on her own to toilet and put me to bed.  I do risk assessments all the time and I’m totally at ease with the mini lift.

My speech therapist introduced me to a Lightwriter which incorporates scanning facilities in anticipation of when I can’t efficiently work the keys with my hands, as come that will, I’ve no doubt.