Category Archives: General Support

Used for all posts about non medical topics.

On line Support Meeting

We will be holding an on-line support meeting on Wednesday 15th July at 11am. We will be using Zoom, you can download the app at https://zoom.us/support/download

If you are living with MND or have been affected by MND, you are very welcome to join us.

We very much hope this meeting will be a success and we will consider further meetings if there is demand. We feel it might be possible to have meetings for specific activities, such as music, films, books or indeed anything for which there is demand from members.

If you would like to attend on Wednesday 15th July please send an email to webmaster@mnda-eastkent.org.uk or telephone 01843 579941.

Video Consultations

One of our members wrote the following report about services being offerred during the current pandemic crisis.

Due to Covid-19 my normal clinic was cancelled. I was offered a video consultation instead.

This would be with the same consultant and specialist nurse that I would have seen.

The only stipulation was that I had to have a smartphone (ios or android).

If I didn’t have a smartphone there was a contact number to call to advise them.

On the day of my appointment I received a text message with a link that I had to press at the time of my appointment.

This opened a video screen on my phone where I could see the consultant and specialist nurse in a room.

The video quality was very good and the audio was clear. I had no buffering issues. Although I have a very poor mobile phone signal I have a very fast internet connection so I tend to run everything through my internet connection.

I felt that I had had a proper consultation and had covered everything that I wanted to ask (I had made some notes beforehand).

I didn’t feel rushed.

An issue was that normally before the appointment I would have blood/lung function tests at the hospital and then discussed at the meeting.

This could not happen.

Another issue is privacy. Its important that you are somewhere quiet and can talk freely. Likewise it is important at the hospital that it is treated as though the patient is physically in the room.

I would certainly like to use the system again.

When we are in more ‘normal’ times perhaps we could be given a choice hospital attendance or video consultation.

Chrissie Batts MND Specialist Nurse who was part of the above consultation added the following.

Since the start of the Covid-19 virus which has caused havoc in our lives, we have all had to adapt.  Being a technophobe with little knowledge, this has been even more of a challenge.

Usually, I would meet people living with MND at home or in the clinic, having face to face to discussions.  As clinics and home visits became suspended, I was asked to trial the new system that EKHUFT were introducing to support consultations.

I trialled this with a couple of colleagues prior to breaking it out to patients!

I surprised myself as to how easy this system is to use, so am encouraging other nurses to use this system.  Obviously it isn’t the same as meeting face to face but, at the present time, it is solving a few difficulties.

If you have used the system with me please let me know your thoughts which I can share with the IT team

Ruby Walk to D’Feet MND

The Ruby Walk to D’Feet MND took place in Canterbury on Sunday 6th October.

Under lowering skies, we hoped for a period without rain and our prayers were answered and our walk went ahead without a single drop of rain.

Brian and Hilary

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

Brian and Hilary hoped that 40 walkers would walk for 40 minutes and raise £40 in sponsorship, a target of £1600.

54 Walkers turned out on the day, walking for 40 minutes around the athletics track at Lifestyle Fitness in Canterbury, raising the astonishing sum of £3,113 in sponsorship.

The event started with a group photograph of all the Walkers by the Kentish Gazette, which we hope will be published in their next edition.

Walkers ready to start

Walkers came from all parts of East Kent and some walkers travelled from as far as the Isle of Sheppey.

Huge thanks to Brian and Hilary for organising this excellent event,  especially thanks to all 54 walkers who jointly raised £3,113 in sponsorship to date, a fabulous amount which will be used to support people living with MND in East Kent and to contribute towards researching a cure for this devastating disease. 

We would also like to thank Lifestyle Fitness for allowing us to use their track and to Kentish Gazette and the KM Group for their support and especially to everyone who contributed monies towards this great fund-raising event

If anyone has any sponsorship remaining to be paid, please send your cheque made out to MNDA East Kent to 171 Percy Avenue, Broadstairs, Kent, CT10 3LE or alternately to Just Giving at https://www.justgiving.com/fundraising/rubywalk2019  If you use the Just Giving Link please indicate this is sponsor monies for the Ruby Walk.

Anyone wishing to donate can also use the Just Giving link above.

You can see Brian and Hilary give an interview to Kent Online.  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.

Support Meeting – Battle of Britain Memorial

We are delighted our next Support Meeting will be at the Battle of Britain Memorial, Capel Le Ferne on Saturday 19th October.

The meeting will start at 11.00. We will enjoy tea, coffee and cake

It promises to be a great meeting and we look forward to a good turnout and of course wonderful weather.

The address is The Hunters Lodge, Battle of Britain Memorial, New Dover Road, (B2011), Capel Le Ferne, CT18 7JJ

Everybody affected by MND or has been affected by MND is welcome.

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 

A thoroughly enjoyable Spring Lunch

East Kent MNDA Group help their annual Spring Lunch on Saturday 27th April at the Yarrow Hotel, Broadstairs.

There were 36 diners and we all enjoyed a well prepared and presented 3 course meal by the staff of the Yarrow Hotel.  The food was excellent and heartily enjoyed by everyone present.

Diners at the Spring Lunch 2019

We had the honour of having Richard Coleman, the Chairman of our Board of Trustees as our guest.  Richard gave a short speech about the history of the association and where it is going in the future, which was very well received.

Richard made presentation to Katy Styles and Clive Hudson for service to the association.

We had been donated a 4 Ball Golf Prize for Goodwood and we duly auctioned this.  Pat McCabe won the bidding with a donation of £100.00.

Adrian Powell made an impassioned plea for diners to either join our walk to D’Feet MND on May 18th or get their friends to do so. See www.mnda-eastkent.org.uk/walk19

We ended with a raffle, which is always fun.  It is a joy to watch the anticipation of our young diners. Thanks to all our members who contributed prizes.

Our amazing raffle

Thanks to everyone for coming and special thanks to the staff and management of the Yarrow Hotel, who made us feel very welcome. f

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.

Fabulous Christmas Lunch

We had 53 diners at our annual Christmas Lunch at the Yarrow Hotel, Broadstairs on Saturday 8th December.

Diners waiting for the first course to be served

We had an excellent meal, beautifully served by the staff of the hotel, who as ever were excellent.

During the course of the lunch Katy Styles MNDA Trustee awarded a 25 year award to Hazel Izzard (Watts) for her service to MNDA in East Kent over the past quarter century.  Hazel has retired from our group  and we gave her a beautiful bouquet in recognition of the incredible work she has done to support people living with MND in East Kent.

Hazel and Katy with Certificate
Hazel with bouquet of flowers

As in previous years we had a superb raffle, with prizes being bought along by many diners and we had lots of fun drawing the raffle and the children present certainly had fun collecting various prizes.

Raffle prizes

We would like to thank the Yarrow Hotel and their wonderful staff, all raffle donors and everyone who attended for making it such a splendid lunch.

We wish everyone a wonderful Christmas and a good 2019.