Category Archives: Awareness

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.

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

Support Meeting 9th February 2019

The local association held its regular support meeting on Saturday 9th February at Thanington Neighbourhood Resource Centre Canterbury.

The meeting was well attended by those living with MND, their carers, association volunteers and friends.

We learnt about the role of Association Visitors, how they can support people with MND and their carers/families. 

We also learnt about the role of a trustee of the national MND association. How it was important to support research via funding and to constantly highlight to MPs and the wider media the difficulties and frustration that people with MND have in accessing benefits.

Clive, the local association chairmen gave an update on monies recently raised. He also spoke about how the local association spent its funds.

One of the issues discussed was how to access priority services with the major utility companies, such as being able to have an emergency electrical supply during power cuts so that ventilators will still work.

A variety of  homemade cakes were enjoyed by those present.

3rd Coastal Walk to D’Feet MND May 18th 2019

We will be holding our third Coastal Walk to D’Feet MND on Saturday May 18th 2019.There will be three walks, the first  from Whitstable to Broadstairs , the second  from Birchington Minnis Bay to Broadstairs and the third from Margate to Broadstairs.  All will end with refreshments at The Wrotham Arms, Ramsgate Road, Broadstairs.There is an entrance fee of  £10 which includes a tee shirt (collected on the day), training program, detailed plan of walk, and full insurance.  Only registered walkers can walk and they must wear the tee shirt for insurance purposes.Each walker is requested  to find sponsorship to support people living with MND in East Kent.  There is no obligation to raise sponsorship but all support is greatly appreciated.To register for the walk, please visit www.mnda-eastkent.org.uk/walk2019 , complete the form, then follow the link to Just Giving to pay your entry fee of £10. If you intend to set up your own JustGiving page, we are happy for you to do so. Please select MNDA as your charity and then please mention MNDA East Kent in your story to ensure that funds you raise are used for people living with MND in East Kent.  Once you have set up your JustGiving Page, please link it to our team at www.justgiving.com/teams/coastalwalk2019/join  so we can keep track of the total funds we raise.If you want to make a donation in support but not register please visit our Donations PageShould you experience any difficulties please email webmaster@mnda-eastkent.org.uk

The route is shown on the map above. Training programs for the walks, the Walk Plan, sponsorship forms, posters and flyers can be downloaded below:

24 mile walk training programme download PDF

11 mile walk training programme download PDF

Walking Route and Plan download PDF

Sponsorship Form download

Poster download

We  thank our sponsors, with whose help we are able to raise substantial sums to help people living with MND in East Kent.

 

Pearson Whiffin Charity Football Competition

On Saturday 2nd June the 7th annual Pearson Whiffin Charity 5-a-side football tournament took place at KSports Cobdown in Ditton, Aylesford. 

Competition in progress

The day was overcast but dry, ideal conditions for playing football.

48 teams played several matches each seeking to win the coveted Champions Cup, the cup was won by Macklands with ISS winning the Consolation Cup.

Macklands – Winners Champions Cup 2018
ISS – Consolation Cup Winners 2018

The chosen charity for the day was MNDA in Kent, with all proceeds to be shared amongst the branches and groups in Kent.

Pearson Whiffin organisers and MNDA volunteers

Through various activities on the day and raffles, Pearson Whiffin raised over £5000 to support people living with MND in Kent.

MNDA East Kent warmly thank Rob Pearson and his team for organising this wonderful event and raising funds to support people living with MND in Kent.

Please support our sponsors by visiting www.pearsonwhiffin.co.uk for all your recruitment needs.

http://www.pearsonwhiffin.co.uk

Prescription Charges Exemptions and Iniquities.

The article below was published in The Huffington Post – and is best seen by following this link https://www.huffingtonpost.co.uk/entry/since-my-husbands-diagnosis-with-kennedys-disease-our-income-has-plummeted-prescription-charges-only-add-to-this_uk_5b1142f3e4b0d5e89e1ef965?guccounter=1 

This Sunday marks the 50th anniversary of the prescription charges exemption list. This list has remained largely unchanged since 1968, which campaigners say has resulted in people living with long-term conditions paying high amounts for necessary medication. This week we hear from campaigners and people, in their words, on these costs on why they believe these charges should be scrapped.

Unless you’ve seen your income erode to nothing, you probably wouldn’t get aerated about prescription charges. You might notice when you pop into your doctor’s surgery for a prescription, that the cost has gone up per item (currently £8.80 in England if you are interested). You might think about why some conditions get free prescriptions and others don’t but you probably don’t send much of your time worrying about it.

Katy and Mark Styles

As my husband and I have recently found out, we are all one illness, condition or accident away from discovering all about prescriptions charge exemptions and the inequity present in the current list.

The list of medical conditions which are exempt from paying for prescriptions hasn’t changed since 10 June 1968. Cancer was subsequently added to the list in 2009 but that was the last change. Why is this a problem? I’m going to use my husband Mark’s long-term illness as an example. The first paper published on Mark’s condition was published in July 1968. This was a whole month after the list of prescription exemptions was drawn up. The list hasn’t kept up to date with medical progress or treatments.

Kennedy’s Disease is a rare disease of the motor neurones. Mark was once fit and active, with a professional career and interested in cycling, swimming and running. He started to limp and we all thought he needed some rest and a bit of physiotherapy. The limp became worse and he started to fall over. He went from using a stick, to crutches and now has a wheelchair to help him move around. His muscles are simply wasting away and his breathing muscles need to be supported by a machine at night.

Kennedy’s Disease is progressive and degenerative so things get worse over time. There is no treatment and no cure. So, no drugs. However, Mark does get frequent chest and throat infections, sometimes needing steroids and antibiotics.

Mark was ill health retired four years ago and I no longer teach. I am now his full-time carer. Our income has fallen off a cliff. We used our savings to adapt our house. We created a downstairs room and a wet room as he could no longer climb stairs. Having a long-term condition means additional expenses. We travel further for medical appointments to see consultants in specialist clinics. Heating and water bills are higher and costs are rising.

In addition to specific illnesses, there is one other category that enables a medical exemption from prescription charges. Anyone with a continuing physical disability which prevents them from going out alone, is exempt. In other words, someone in a wheelchair, or who is unable to go out without a carer, is eligible for free prescriptions.

We didn’t find out about this from any of the clinicians who had diagnosed or continued to support my husband, nor did we find out during his NHS wheelchair assessment. We found out from a member of staff at the Motor Neurone Disease Association (MND Association) * during an unrelated conversation two years ago.

Once we were told this we filled in a simple form, the GP signed it and sent it for processing. The onus is on the person living with the condition to find out whether they are exempt and to complete the form. We do feel that signposting is needed to highlight that this exemption is available. Anecdotally we are aware of people who are eligible for free prescriptions via this category but do not know about it.

And the real kicker – Mark has recently been diagnosed with diabetes as a consequence of his Kennedy’s Disease. His body effectively destroying the delicate insulin producing cells he needs. Diabetes is a condition exempt from prescription charges. He now qualifies for free prescriptions on two fronts. But me, as an asthmatic, and his carer, earning just £64.40 a week in Carer’s Allowance does not. A prescription charge of £8.80 for me is pretty much a whole day’s pay (£9.20). Now that’s a sobering thought.

*The Motor Neurone Disease Association (MND Association) support people with Kennedy’s Disease.