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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.

Ruby Walk to D’Feet MND

Can you WALK for 40 minutes and can you raise £40 sponsorship?

If the answer is yes to both please join us in Canterbury on Sunday 6th October. The venue is Lifestyle Fitness, Canterbury Campus, Knight Avenue, Canterbury, CT2 QA and the time is 2pm.

This year is the 40th anniversary of the Motor Neurone Disease Association. To mark this event Brian Sackett and his sister Hilary Smith are organising a Ruby Walk to D’Feet. Both Brian and Hilary lost partners to MND, so it is a subject very close to their hearts.

Hilary Smith and Brian Sackett

Registration details are shown below, if you register on the web site, you will be sent an electronic sponsorship form which you can print, if you chose to register with Brian Sackett he will send you a sponsorship form.

Every sponsored walker will receive an MNDA tee shirt and upon completing the 40 minutes, you will receive a souvenir medallion of the day.

You can register for our walk at http://mnda-eastkent.org.uk/rubywalk

You may donate to the Ruby Walk to D’Feet MND at https://www.justgiving.com/fundraising/rubywalk2019 all monies donated will be used to support people living with MND in East Kent or to contribute towards research for a cure.

Brian and Hilary gave an interview to Kent On Line. It is very moving and worth a read. https://www.kentonline.co.uk/canterbury/news/i-thought-it-can-t-strike-our-family-again-how-wrong-was-i-210322/ this link also takes you to the KMTV interview.

Joe Shaves Head For MNDA

Joseph (Joe) Taylor a scaffolder from Deal, was enjoying some drinks with friends in The Farrier, Deal.

Joe Taylor

His friends tried to get him to shave his head and jovially offered to pay him to do so.

Joe decided to go ahead and have his hair shaved off, but insisted it was done for charity.

The charity Joe chose was the Motor Neurone Disease Association in memory of his Grandmother who died from Motor Neurone Disease.

Joe’s head was shaved at the end of May, donations were made by Friends, Family, Customers of The Farrier and colleagues at All Access Scaffolding in Margate.

The total raised was £300 and this was presented to Clive Hudson, Chairman of the East Kent Branch of MNDA.  The money will be used to support people living with MND in East Kent.

MNDA East Kent would like to thank Joe, his family and friends, customers at the Farrier and colleagues at All Access Scaffolding for their generosity. ff

Coastal Walk to D’Feet MND

The third Coastal walk to D’Feet MND took place on Saturday May 18th.  There were three walk options.

  1. A long walk (approx. 24 miles) Whitstable to Broadstairs.
  2. A medium length walk (approx. 13 miles) Minnis Bay to Broadstairs.
  3. A short walk (approx. 6 miles) Margate to Broadstairs.
Walkers at the Margate Start Point

Some 60 walkers walked on the day.  The weather was fair and the walk most enjoyable.  The walkers from Whitstable started at 7.30 am, those from Minnis Bay at 11.30 and the final group from Margate at 1.30pm

All walkers finished at the Wrotham Arms, Ramsgate Road, Broadstairs, between 2 and 4.30pm. Medallions were presented to all walkers who completed their walk. 

The Finish Line

Adrian Powell made a brief speech of thanks to all walkers, the organisers and of course our sponsors.

Refreshments were provided by the Wrotham Arms and excellent they were, thanks to Jackie and her team at the Wrotham Arms.  Soothing drinks were also enjoyed from the bar.

As of June 12th, the Walk has raised £6,500 including gift aid.  A fantastic result which means over 3 years we have raised over £25,000 to support people living with MND in East Kent and contribute towards research for a cure for this devastating disease.

As a direct result of our walk in 2018, MNDA East Kent have been able to fund the purchasing of a piece of equipment to allow the respiratory nurse to be mobile in the MND clinic at William Harvey Hospital in Ashford. This will make life much easier for patients with MND visiting the clinic.

We will be announcing details of installation on our web site, when the equipment is installed.

Huge thanks to our sponsors Greenwich Kitchens and Premier Signs and Graphics; to The Wrotham Arms; to all walkers; to everyone who collected sponsorship, and everyone who gave generously.

Thank you, Wrotham Arms.

The Wrotham Arms in Broadstairs has been a fantastic supporter of MNDA East Kent for several years.

The Wired New Year’s Day Jam, which featured many local musicians, and prizes donated by various people, with a special mention to Hornby for their generous donation, raised the fabulous sum of £960.30.  The main contributor being the raffle, but also sales of the Fairholt album and some £70 from the collection box.

Raffle Prizes

More recently on 14th April Lodestone, Flame Pilots and Spyplane played in the afternoon.  Ben Mills and Robert Jarvis performed in the evening, great fun was had, and a raffle raised some £310.00.

Flame Pilots

The Wrotham arms has now raised over £6,000.00 for MNDA East Kent, since the 1st Jan 2016. Thanks to Jackie and her staff at the Wrotham Arms, thanks to all the musicians who have played at various functions, thank to all organisers and finally thanks to all the customers at the Wrotham Arms for their generosity over the past few years.

Saltwood Boxing Day Fun Run 2018

The Saltwood Run has been held for many years on Boxing Day.  Large numbers of runners turn out to run off some of the Christmas dinner.

North Kent MNDA have been a recipient of funds from the run for many years.  We have received a cheque for £2,500.00 from funds raised at the 2018 run.

Thanks to Ross Sansom and the team organising the Saltwood Run and to all the runners who efforts over many years have raised substantial funds to support people living with MND in East Kent.

Many thanks also to the Members of Rotary Club of The Channel for their continuing support over many years.  We received a cheque for £250 for the run in 2018.

Huge thanks to everyone involved in the Fun Run:  The Runners, Ross Sansom and his team, Rotary Club of The Channel and everyone who donated. People living with MND in East Kent and MNDA East Kent are very grateful for your continuing support.

We Care Campaign wins national campaigning award from UK Parliament

On Tuesday 2nd April, Katy Styles and the We Care Campaign team arrived at Westminster to collect the UK Parliament’s Digital Campaigner of the Year.

2019 marks the second year of the Your UK Parliament awards. The winning entries were chosen by the Speaker of the House of Commons, and a judging panel of MPs, Peers and independent judges. All of the winners attended an awards ceremony hosted by the Speaker in the Houses of Parliament.

The Rt. Hon John Bercow, Speaker of the House of Commons, said:

Katy Styles ©UK Parliament_Mark Duffy

“There is nothing more inspiring than hearing how these winners used so many innovative ways to get people more involved and connected with UK Parliament. This year’s awards have shone a light on this amazing work – and will hopefully encourage others to join the campaign.”

We Care Campaign is an ongoing campaign to get a better deal for the UK’s 7 million unpaid carers. It is led by carers, for carers. Carers are a hard to reach group as they often feel too tired, too isolated and disempowered to take part in campaigning.

We Care undertook 3 digital activities. Katy ran an e-petition calling on government to publish a Carers’ Strategy. The petition obtained 2,124 signatures. We Care also encouraged unpaid carers to take part in a twitter #AsktheMinister question session to the Minister for Social Care, Caroline Dinenage. We then used our own @WeAreCarers account to host Barbara Keeley, the Shadow Minister, enabling carers to ask more than one politician the same questions during Carers Week. We Care organised a Valuing Carers digital event where decision makers, carers and the cared for posted messages of support for unpaid carers during Carers Rights Day.

We Care Team with Mr Speaker Bercow ©UK Parliament_Mark Duffy

We Care Campaign’s activities made a massive difference and impact on our target audience of unpaid carers who took part in our campaign actions. Individual carers took part in digital actions which helped organise a real grassroots campaign. We Care worked hard to utilise every contact made, by replying to every single contact individually. An unpaid carer speaking of one of our digital takeovers said, “Normally we get a bit of cake and bunting for Carers Rights Day. This is so much more than that. It’s not been done before.” We equally made an impact on individual decision makers, within parliament and beyond and have built a strong network, enabling us to reach more carers in 2019.

Katy Styles who led the campaign said,

“We Care want to thank you so much for a special day in Parliament. Engaging with Parliament at this time in a positive way has never been so important and we have loved playing a small part in this.” fff

Thanks, Beyond the Valley Travel

Beyond the Valley Travel is a not for profit organiser of travel for members in the Elham Valley.

Jenny Barling who sadly died of MND in late 2017 organised the travel events for many years and was a very popular figure.

Upon her death David and Surian Tamsitt took over, continuing Jenny’s excellent work in previous years.

During the period since Jenny died the group have held many events and at these event raffles were held in memory of Jenny.

Surian Tamsitt presenting cheque to Clive Hudson, Chair MNDA East Kent

This culminated in Mid-April with the presentation of a cheque for £1,100.00 to MNDA East Kent to be used for the support of people living with MND in East Kent.

Members of Beyond the Valley Travel at the cheque presentation.

MNDA East Kent would like to thank David, Surian and all the members of Beyond the Valley Travel for their generosity.  Huge thanks to you all. fff