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.

Life with MND - May 2014

Dietician arranged for me to get weighed at our cottage hospital in Forres. Both the dietician and I are very happy with my weight of 63kg (10-3) considering last time weighed was 14/11/2013 when I was 65kg.

Our Occupational Therapist organised a demonstration of a neck brace and a mobile floating arm aid - I was impressed with both items - they would certainly be of benefit at this stage of my illness, so OT will try and get funding for both items.

Retaining this month of well-being I’m happy with my sleep pattern over the past two months, although far from perfect, but considering my present level that MND has progressed - It’s very acceptable!  Also, in bed I can still do beneficial exercises, that no way could I do from the chair.

With nothing further of interest to say on MND, now would be a good time to air my views on the referendum.

First, I’ve voted SNP, for the past 25 years. Not, I hasten to add for breaking up the Union, but to get more say for Scotland regards political considerations. Now having achieved this, it’s time to consider if Scotland could be independent. According to Google the population of London is over 8 million, whilst Scotland just over 5 million. To think a small concentrated pocket of people in England could theoretically, politically control a geographical area the size of Scotland is frightening and certainly if contemplating a ‘yes’ vote for independence, is food for thought!  

 Other points to ponder for a yes vote on independence:

Those against separation say Scotland couldn’t support itself, but after 300 years of Westminster rule one may say that over that period, we have lost our creative industry etc. 

Small is beautiful - and Scotland with its current population, I feel falls into a manageable category. Also beautiful scenery - lucrative for tourism;  Energy scope with it’s potential wave and water for future hydro schemes, could  well be able to become self-sufficient for it’s energy. 

I’m listing to all arguments for and against, readers will surmise that I’ve a strong leaning towards independence, but my decision will be taken nearer the date. Anyway I feel it’s not us in the twilight of our years, but the younger generation who will have to  face up to the coming years, which ever way the vote goes.

Living with MND - April 2014

Continuing my March remarks on Jean’s 24/7 care we had a meeting on the 2^nd with the council’s community carer and the care teams organiser regarding more care time for Jean, as my condition progressively gets worse.  As the year moves on I now see the importance of support for Jean to have regular respite and ‘backup’ to my now constant needs as MND disablement is now focusing on care - I’ll keep readers posted on the outcome of our meeting!!
To move this forward we have, on two occasions, taken in a paid carer so Jean could have up to three hour breaks to relax and do her own thing.

5/6^th I call days when I go into a zombie mode and doze frequently, my MND days - thankfully these days don’t happen often!!

Wheelchair team visit to fit moveable body supports on the chair to try and stop my tendency of leaning to the right - certainly when fitted it keeps me more upright.

On 27^th and after two aborted attempts, my article in 'The Herald' newspaper was published - fair chuffed with the result!!

The weather being favourable on the 28^th it was decided to try getting into the car. Bearing in mind the ongoing deterioration of right arm and hand which controls the manipulation of the chair, and the fact that I haven’t been in the car this year, the outcome was - I managed fine!

 With the relatively mild winter trees are breaking into leaf - for someone that’s been involved in horticulture for 50 years it’s a good feeling that the universe is still consistent and reliable regarding the seasons. Spring has always been my favourite!

The new life of leaves bursting forth in lovely fresh shades of green, before pollution dulls them down.  Also the uncertain season ahead when trees are susceptible to climatic conditions and disease - I suppose on hindsight similar to us humans.

As a point of interest, I remember reading whilst studying for a horticultural diploma that a fully grown mature oak tree needed to draw up through its roots 200 gallons of water daily to avoid drought conditions - some feat for the mighty oak - aye nature is wonderful!