Monthly Archives: August 2019

Ela’s Story

I am writing this article for publication. 

It is for people with Motor Neurone Disease (MND) to give courage, hope and positive determination for others to live with this condition.  I don’t like to call it a disease it such a horrible word for people to say Martin had MND for five years.

Martin and I would often start reading articles in the magazine and stop reading them as it would often be about people who had left us, I don’t want to sound disrespectful to anyone, but we found that extremely hard reading.

Martin Miller

We wanted to open the magazine and find positive stories, uplifting articles, tips and guides on how to manage life with MND.

Articles about people’s adventures, ideas that people might have and hobbies that people can do despite MND.

We would often start reading articles only to shut the magazine so I wanted to write an article that was uplifting and if only one person gained from it, I would be happy

At the beginning everyone who has MND knows what it is like, so I’m not even going to go there. I was racking my brain every minute for something to help.  It came to me acupuncture may be beneficial, now this may not work for everyone, but in our experience, it was so helpful.

We went to see this doctor in Canterbury, who was extremely professional.  You can imagine our lives were upside down and we could discuss nothing.  It seemed we could only talk about getting calls from hospitals, from nurses, from the hospice; all this at the most stressful time.  We felt situation was helpless. Our emotions were so high, and everything seemed to be collapsing in our world.

We went to this Chinese doctor, who lead Martin into the back of his practice, and I waited in the front, not knowing what to expect.  When Martin came back after half an hour, he was smiling which made me smile.  Just the way he was different.

We left and when we got to the car, I was asking millions of questions about what the Doctor had done.  Martin told me he had put these needles around arts of his body, telling him he could not cure MND, but that he could but all the emotions Martin was feeling in a box and put them to sleep in the back of his mind.

Having shut the lid on the box, from that day our lives changed we could talk about everything freely without having a breakdown.  The positivity was astonishing, and we started living with MND.   Our lives were no longer taken over by MND.

Martin continued to see him for a few months until it was no longer necessary for us to go.  We decided that we would live each day as we would have done without MND and we did just that!

We often went fishing, it took our minds somewhere else, outside in the fresh air laughing and having fun.  When Martin could no longer fish, I started to fish and my excitement and laughter when catching a fish, made Martin laugh.  He said it made no difference who was fishing he found watching me, so engaged in it, fun for him.

That the sort of guy he was to be able to find hobbies and activities that keeps your mind focused is the best medicine in the world.  It takes you out of your thoughts and allows you to think of other things.   It gave us the strength to carry on as normal.  We were not hiding away from MND, this was the therapy which worked for us

I’m not saying it was all rosy, there were the hospital visits and the consultant visits which in the end we stopped attending.  Martin thought them a waste of time, all doom and gloom.  Our experience was not positive, but this article is about hope, courage and determination.

The time came when Martin needed a wheelchair, challenging for most but not content with the wheelchairs available, which would just about go over a stone when outside.   A friend put up a fundraising page and Martin had the best outdoor wheelchair available and a van with ramps.  He would sit in the back and I would drive, and we went on the beach, up hills in the mud this wheelchair went everywhere.  Martin could still do whatever he wanted to do and go anywhere he wanted.

As Martin’s condition progressed, we sold the van got a car with a portable car hoist and Martin sat in the front still doing what we wanted to do.  He would spend hours looking for stuff on the Internet so we could continue do what we wanted.  

Over time we changed our hobbies to the garden which became our sanctuary.  I bought trees and shrubs.  All sorts of planning went on and we always kept busy.

I could write pages and pages more.  I wanted to write this article to give you an insight into Martin’s world with MND.

It was never a walk in the park.   We coped by being together, doing everything together, having many interests.  Keeping one step ahead motivated by love, caring for one another, smiling, laughing reading books out loud, listening to music, having a beer, smoking a cigarette, sitting out in the snow, and standing in the wind because you like the wind in your face.

Still facing forward even when you are ill you are still you!  MND cannot and will not change that.

Ela 

National Citizenship Service Group fund raising in Thanet.

A group of young people doing their National Citizenship service have selected MNDA East Kent as their charity for a series of events taking place in Thanet from Tuesday 13th until Friday 16th August.

The reason for selection of MNDA was the death of a family member, you can see the video the group made about this here https://t.co/QYjklKXEEt?amp=1

NCS Thanet Group 3 2019

You can donate to the group on Just Giving by visiting https://t.co/ccILEJNMM4?amp=1 Please support this group of young people who hope to raise in excess of £500, to date they have already raised over £200. Huge thanks to every donor.

The events planned are:

Tuesday 13th August Walking Football with a cake sale at Margate Football Club, Hartsdown Road, Margate. 13.00 – 16.00. Admission is free. To play football, the donation is £1 and for 3 penalties the donation is £2. Full details can be found by visiting here https://www.instagram.com/p/B084k9VFjnu/?igshid=16kb9oyjavwvs and here https://www.instagram.com/p/B08-OltlmEh/?igshid=1dvkortoex0xq

Tuesday 13th August at 16.35 members of the NCS Group will be visiting 107.8 Academy FM to be interviewed. Details here https://www.instagram.com/p/B053laKFlAg/?igshid=1rl585ob4lbos

Wednesday 14th August there will be a live stream on Twitter, Instagram and You Tube. Details to follow.

Friday 16th August NEON PARTY at Newington Green Community Centre,
Marie Thomas, Princess Margaret Avenue, Ramsgate, CT12 6HX, from 16.00 – 20.00. Entry will be £3.00. There will be music and refreshments.