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’.