A BIT OF AN UPDATE

Hi Jim,

Fingers not working too well, but other than that I'm fine. How are you?

I had a good Respite at Rothbury, Culminating in my RAF mate pushing me on Great North Run(attached) and met a few MND old faces.

Last month the RAF Leuchars GC I belong raised over £5500 for the SMNDA.

All the best,
John
 

Jan, Laurence & Me

Liz, Ann, Alan, G & Me

 

First of all let me introduce myself. My name is John Mackie . I am married to Jenny and have 2 daughters and 2 granddaughters.

Born in Glasgow and adopted into a Forfar family I joined the Royal Air Force from school at age16 achieving my ambition to reach the rank of Warrant Officer, being medically discharged in Aug 98 after 34 years service.

I was diagnosed with M.N.D. on 6 March 98, which was a shock, and a relief as it had taken almost two and a half years to diagnose. It was at a time when I was approaching my 50^th birthday and my youngest daughter was getting married, so we decided not to tell my daughters till after the wedding.

To me this was just another challenge after 17 R.A.F. Stations in 34 years, being separated from the family many times... and on one occasion living away from home for eight and a half years only seeing them at weekends. During this time I also spent six months on Ascension Island.

I had also participated in a few sports from swimming, rugby and running,  achieving 30 full marathons over 10 years.      

On leaving the R.A.F. after my diagnosis I was able to join 2 charities, Castle Furniture Project (Cupar, Fife) as a driver with a team of mental health patients, picking up second hand furniture and redistributing it to people on low income, benefits, single parent families, etc.

The other charity was Sargent Cancer Care for Children (St. Andrews), where I either collated money collections or counted the contents of moneybags from can collectors throughout Scotland.

After a year as well as my speech deteriorating, my balance got worse, so had to give up these activities.

My first apprehensive meeting with the local M.N.D. community was at the M.N.D. Christmas Lunch at the Grouse and Claret in December 98, where I was made very welcome meeting characters like Dave Chambers, Stephen Lang and Archie Johnston. Dave amazed me with almost no use of muscles from the neck down yet was still in very high spirits. He was my mentor.

This stimulated me to try and `get involved with raising awareness of M.N.D., so at every opportunity I would display stickers when out on my various means of mobility ie. wheelchair, scooter, trike, etc. This has prompted various people to stop me in the street and ask about M.N.D. including one lady whose brother had been newly diagnosed and who did not know much about the disease.

I am proud to be involved as Chairman of the Perth and Kinross Branch of the S.M.N.D.A. following Dave Chambers, whose Memorial Football Tournament is an annual event for the Branch. It is a great committee with the backbone being the Ladies of our Perth shop which is the only S.M.N.D.A. Charity shop in Scotland.   

One of the best ways of combating this disease is to keep positive and keep busy. Jenny and I joined the Stroke and Splash Club in St. Andrews, with club meetings on Mondays and swimming Tuesdays and Thursdays. The swimming club has been great fun and we have had many laughs along the way. I did a charity swim for S.M.N.D.A. and the Stroke Club and Dave Chambers was my length counter on this occasion. Unfortunately, of late I have found that the effort of getting into the water and the fact that I have lost my confidence has forced me to give up the swimming although Jenny and I will continue to meet up with the group for a coffee and to catch up with ‘the gossip’.

I think because of my happy attitude and outlook on life I was fortunate to be given a full hip replacement 3 years ago, which had never been performed on an M.N.D. patient before. This has relieved me of much pain, especially at night and getting in and out of the car. Mr Espley, my orthopaedic surgeon, was brilliant. 

I am very lucky to have the local support at R.A.F. Leuchars and Elmwood Golf Society. R.A.F. Leuchars GC organised an S.M.N.D.A. Charity Day raising over £3000 and they take me on golf days and last year they had hired me a buggy as normal, but I crashed it on the 3^rd Tee, not doing any damage to the buggy but I was thrown out, to end up with an immobile shoulder and large bump on the head, consequently no more buggy driving for me. Unfortunately I decided to stop driving later in the year

2 years ago I purchased a Power Trike (Jenny curses!!!) that fits onto my wheelchair and this has made a fantastic difference to my being able to get outside and advertise the S.M.N.D.A., with a number of people speaking to me, particularly at the Links Golf Courses in St. Andrews. Very useful so long as you’re careful and there are not too many steep inclines. On one occasion at St. Andrews around the Jubilee Course I got ¾ the way up an incline and it slid back into a ditch, so I had to wait about half an hour for someone passing by to help me. I tried to catch the attention of a Ranger by waving but he just waved back.

In last years S.M.N.D.A. Fun Run in the pouring rain a friend helped me up the hill and to do a bit of advertising. On a couple of occasions Jenny has had to come and find me as the battery had gone flat but generally it is a useful independent tool.   

I was able to achieve another ambition last year in fulfilling a challenge that Dave and I wanted to do and that was to go gliding, so this was done near Kinross at Scotlandwell airfield. I don’t think Jenny has laughed so much as I looked like a trussed chicken in the hoist getting into the glider, so if any of you out there want to go gliding, they do 'Walking on Air’ for the disabled on a Friday.

Living with M.N.D. is not all doom and gloom and Jenny and I have had many   experiences and laughs while eating out and trying to find toilet facilities.

There is a particular hotel in St. Andrews that has a disabled toilet but this is upstairs – they have a lift but this is so small you cannot get a wheelchair into it. There is a story told that an American died in the hotel whilst on holiday and the coffin had to come down in the lift vertically – see what I mean!!

Christmas last year was spent with my daughter in Peterborough and all the men volunteered to take me to the local pub and on arriving 3 large steps was no problem with so many helpers, then of course after a few pints, the inevitable ...only to find no disabled facilities so once again the only course of action was to use the Ladies  - not the first and probably not the last time I visit the Ladies. There is one thing that could certainly be improved and that is facilities for the disabled – alright in big towns and cities but if you are off the ‘beaten track’ facilities are few and far between.

Over 3 years ago I was given a Laptop Computer, which I use for the majority of my communications i.e. Emails to family and friends and to send various jokes to heighten peoples days. This has given me a lot of satisfaction as a couple of people have said, “They were depressed and it helped them”.

Hopefully I can meet the challenges ahead with a smile and just to see my granddaughters grow up.     

In conclusion I’ve met many friends through the M.N.D. Community, which I wouldn’t otherwise have met, and with the help and support of family and friends and most of all to Jenny (my carer, taxi driver and mechanic!) I hope to carry on raising awareness and leading a busy life and most of all thinking positive. I would also like to thank Shuna and health teams and social work teams for their continuing support. 

 

DIAGNOSED WITH MOTOR NEURONE DISEASE GO OUT AND MAKE PEOPLE AWARE DON’T BE IMPRISONED