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Mid Kent Matters
Spring 2019
DATES FOR YOUR DIARY
Saturday 26th January
Patient and Carer Meeting
Wisdom Wellbeing & Therapy Centre, 3.00pm
Friday 1st February
Charity Day at Maidstone Grammar School
Details from Lynne Eldred 01732 845278
Saturday 23rd February
Branch Open Meeting - Speaker Paul Rothwell on wills, LPAs etc
Wisdom Wellbeing & Therapy Centre, 3.00pm
Friday 4th March
Carers Group meet at the Malta Inn, Allington Lock, Maidstone 12 noon
Saturday 16th March
Mid Kent AGM and Afternoon Tea
Bower Grove School, Fant Road, Maidstone ME16 8NL
Saturday 25th May
Patient and Carer Meeting
Wisdom Wellbeing & Therapy Centre, 3.00pm
Saturday 1st June
Annual Wine & Wisdom
Bower Grove School, Fant Road, Maidstone ME16 8NL
7:30pm start - Tables of 6 - £6.00 per player
Booking essential - ring Joan on 01634 686685
This issue of MKM has been kindly sponsored by Margaret Sullivan & Andy Packham
Saturday 26th January
Patient and Carer Meeting
Wisdom Wellbeing & Therapy Centre, 3.00pm
Friday 1st February
Charity Day at Maidstone Grammar School
Details from Lynne Eldred 01732 845278
Saturday 23rd February
Branch Open Meeting - Speaker Paul Rothwell on wills, LPAs etc
Wisdom Wellbeing & Therapy Centre, 3.00pm
Friday 4th March
Carers Group meet at the Malta Inn, Allington Lock, Maidstone 12 noon
Saturday 16th March
Mid Kent AGM and Afternoon Tea
Bower Grove School, Fant Road, Maidstone ME16 8NL
Saturday 25th May
Patient and Carer Meeting
Wisdom Wellbeing & Therapy Centre, 3.00pm
Saturday 1st June
Annual Wine & Wisdom
Bower Grove School, Fant Road, Maidstone ME16 8NL
7:30pm start - Tables of 6 - £6.00 per player
Booking essential - ring Joan on 01634 686685
This issue of MKM has been kindly sponsored by Margaret Sullivan & Andy Packham
News For People Living With MND
As another year begins, I send my good wishes to you all for 2019.
At our November meeting, we were very pleased to welcome our President Professor David Oliver, who gave a presentation on his research project with MND about "Giving of MND Diagnoses". If you have not already taken part in the on-line questionnaire, I encourage you to do so. Sharing your experiences on this and other care associated issues is vital for MNDA to influence service providers, such as Health and Social Care Professionals to provide timely services to people living with MND. Paper copies of the questionnaire are available, so speak to me or your AV if you prefer that format. |
In addition you will be aware of the many changes happening within the NHS. The expectation should be that they will deliver a service in compliance with the NICE Guidelines. However, should any of you experience difficulties accessing a particular service (as per the NICE/MNDA Guidelines Information "What to expect from your care" - copies available from your AV), please do not hesitate to speak to any of us. Any comments can, of course, be anonymous. We welcome positive comments/experiences as well as negative ones.
It is always our pleasure to welcome you to our Patient and Carer Support Meetings (tea and cake readily available), so please note dates of future meetings on the front page of this magazine. Remember to keep in touch with our website for up to date information. I look forward to seeing you all soon. Sheila |
From the Chair
I cannot believe that Christmas already seems to be a distant memory and that we are storming towards spring and those beautiful sun filled days – well I hope we are anyway!
Whilst we wait for Spring to arrive perhaps you can spend some time planning a much needed break or a special day out – the Branch will be delighted to help fund a special trip so please let your AV know about your plans and don’t forget to take a photo to include in MKM. The last year has seen some exciting developments on both the research and campaigning front and as always the Association is at the forefront of many of these projects which are always well documented in the Thumbprint. |
The second reading of the Private Member’s Bill to “Scrap the six month time limit for the Special Rules fast track” will be held on 25th January so hopefully this will lead to a change in the law.
The Campaigns Team are also working with councils to try to improve the experience people with MND face when trying to get adaptations made to their homes. If you have had either a good or bad experience and would be happy for this to be used as a case study please let either your AV or me know. Finally do remember to ask your AV if you are thinking of purchasing anything as we often have pieces of equipment in stock that you can either have, loan or try out – please do ask. With very best wishes for 2019 and I look forward to seeing you at one of our forthcoming events Annette |
Treasurer's report
Well, I have now completed my first year as Treasurer for Mid Kent! When Annette approached me at the end of 2017 and asked if I would take on the Treasurer’s role, I agreed to “give it a try” for a year; I am sure she knew that it would be a role that is not easy to escape from! Unless of course you emigrate! So I am pleased to report that, if you’ll have me, I’m staying for another year!
From September to December we received a total income of £17,713, from fundraising events, in Memoriam receipts, and both individual and corporate donations. Thank you to everyone who hosted, organised, participated in, any of the wonderful fundraising and branch events that raised a over £7,000 for MNDA Mid Kent; Rainham Firefighter’s car wash, the Dragon Boat race, Brenda Sheridan’s Walk to D’feet, the Fingernail Fundraiser, Sponsored walks, many quiz nights, plant sales, Graham’s Brighton Marathon, Coffee mornings…with Cake, Sonia’s Brooklyn Marathon, 100 Club and Quiz sheet sales, the Christmas Bazaar and Christmas card sales. In Memoriam, general donations, and corporate donations including collection tins from Timpsons, Waller Associates, Parkwood Social, N Nichols, Little Market Leybourne and The King and Queen East Malling and from the exchange of foreign currency totalled £2,671. Finally we have been fortunate to receive a grant of £5,000 from Kent Community Foundation (KCF). Our expenditure over the same period was £13,365 and included £4,300 on Carer’s grants, Young person’s grants and Quality of Life grants to support people and their families affected by MND. We have purchased small equipment items, provided heads up collars, a ramp and access, an electric dual-motor chair, swivel seat, cushion and shoes and continue to aid the delivery and collection of equipment and provision of lifelines. |
We have been able to fund the MND Support Days at the Heart of Kent Hospice from our recent KCF grant and continue to pay for therapies. Other expenditure has been on branch administration and prizes for Jean’s quizzes and the 100 Club winners.
Thank you to all of our supporters and fundraisers, it has been great to meet many of you over the last year. Please contact me if you feel I can help in any way to assist with the finance side of your fundraising. Our bank details for anyone wishing to donate directly or via standing order- MNDA Mid Kent, Sort Code 30.96.09 Account Number : 02968567 Gift Aid – If you can donate with gift aid, please ask for a form (these can be downloaded from the MNDA website) and send it to 4 Grassmere, Leybourne, Kent ME19 5QP. Lynne FOREIGN and OLD BRITISH CURRENCY UPDATE Since I first placed a collecting tin in Leybourne’s Little Market shop in March last year, money has been arriving in a steady stream thanks to members, family and friends and Malling District Scouts. The total sum raised by exchanging the coins in 2018 was £704.89! We had one large bag of old British pennies and shillings worth £45 with one old penny worth £5 on its own! So if you have any old coins, unwanted currency or notes, please donate them to MNDA Mid Kent. Lynne |
100 Club Winners
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October
1st 23 Lynne Eldred 2nd 51 Chris Avery November 1st 88 Claire Richards 2nd 33 Jean Lear |
December
1st 94 Jennifer Sanders 2nd 45 Sheila Thompson January 1st 36 Margaret Rowe 2nd 21 David Sheridan |
Beginners2Runners Virtual 50k Challenge
This poster was used to advertise the Beginners2Runners virtual 50K Challenge in August 2018 to raise money for Mid Kent MNDA.
My son Carl has been a team leader for one of the B2R groups and they decided to raise the money in memory of Paul (as he inspired many local runners).
Runners or walkers could complete the virtual run of 50K during August and could split it up into smaller runs and complete it in their own time, rather than run in a race on a set day. Carl and I both completed the challenge and everyone who completed it received a small trophy.
The money raised, via Justgiving totalled £257 for Mid Kent.
Lynne
(The small picture is of Paul and Carl and was taken a few months after Paul's diagnosis in April 2013).
My son Carl has been a team leader for one of the B2R groups and they decided to raise the money in memory of Paul (as he inspired many local runners).
Runners or walkers could complete the virtual run of 50K during August and could split it up into smaller runs and complete it in their own time, rather than run in a race on a set day. Carl and I both completed the challenge and everyone who completed it received a small trophy.
The money raised, via Justgiving totalled £257 for Mid Kent.
Lynne
(The small picture is of Paul and Carl and was taken a few months after Paul's diagnosis in April 2013).
Body Parts
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Some of the returned sheets look as neat as ever, but others bear the marks of the festive season! Thank you all for your enthusiasm and to the agents for their ability to continue selling the sheets – fridges to Eskimos comes to mind!
The answers were:
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24. Thigh
25. Shin 26. Skin 27. Liver 28. Eye Lash 29. Waist 30. Fingers 31. Hip 32. Gums 33. Belly Button 34. Sole 35. Wrist 36. Heart 37. Temple 38. Stomach 39. Mouth 40. Vein 41. The palm of my hand 42. A shot in the arm 43. Like a bear with a sore head 44. By the skin of one’s teeth 45. Tongue tied 46. No elbow room 47. Down in the mouth 48. Hanging on by ones finger-tips 49. Head over heels 50. Fed up to the back teeth 51. Neck and neck 52. Blood is thicker than water 53. Many hands make light work 54. Eye for an eye & a tooth for a tooth 55. Hair raising |
Christmas Bazaar
Joan organised an early bazaar this year in the hope of catching some of the first Christmas shoppers. We had a steady stream of discerning and generous customers from the time we opened. As always, it was good to welcome old friends – one even travelled from Spain to see us! Father Christmas, ably assisted by his elves and Dave did a good job enticing people over the threshold and in drawing the raffle. It is a lot of work, but the bazaar plays an important part in making local people aware of MND and ensures that they know that there is a branch which supports people living with MND in the Medway Towns.
The overall total was boosted by £80 when Annette sold a golf trolley on ebay.
Sheila
Joan organised an early bazaar this year in the hope of catching some of the first Christmas shoppers. We had a steady stream of discerning and generous customers from the time we opened. As always, it was good to welcome old friends – one even travelled from Spain to see us! Father Christmas, ably assisted by his elves and Dave did a good job enticing people over the threshold and in drawing the raffle. It is a lot of work, but the bazaar plays an important part in making local people aware of MND and ensures that they know that there is a branch which supports people living with MND in the Medway Towns.
The overall total was boosted by £80 when Annette sold a golf trolley on ebay.
Sheila
Father Christmas and Dave drum up support - in some wintery sunshine
Sue puts final touches to Bric-a-brac - and someone is pleased to see Joyce!
Young helpers and Annette help Father Christmas draw the raffle!
An AGM Experience
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Earlier in the year I was reading a Thumb Print magazine and saw an article on the MNDA's AGM and conference which was being held at the Radisson Blu Hotel, East Midlands Airport on Sat 14 July. Before I fully realised what I was doing I had emailed the MNDA and booked a place! East Midlands can't be that far from Kent.
My husband and I decided to travel up the day before the conference and stay overnight so I booked an accessible room with breakfast at the Radisson Blu Hotel. The journey should have taken about 3 hours from Maidstone but we left a lot later than planned so we were caught up in very heavy traffic on the M25 and M1-this was due to me having an major altercation with an escalator in town that morning! Well it was Fri 13th! (Note to self...you have MND, don't assume that you can still use an escalator even though you could four months ago. We eventually arrived at the hotel about 8pm. There were lots of disabled parking spaces and a large car park, all with level access for wheelchairs. The hotel is very close to the airport and you have a great view of planes taking off but there was no aircraft noise. The hotel was lovely; very modern with lifts to all floors, with plenty of space for wheelchairs and mobility scooters. As we had arrived so late we had dinner in the hotel which was rather expensive. Our room was very comfortable and we enjoyed a lovely breakfast the following morning. We had agreed I would attend the conference on my own partly because I would only have spoken to my husband if he was there and I really wanted to 'mingle' and partly because my husband wanted to visit nearby Donnington Park motor racing circuit. I was quite nervous when I checked into the Conference to get my Welcome Pack and name badge but I needn't have worried. I was immediately put at my ease and everyone was so friendly. The Association had a stall in the foyer selling Christmas cards and other merchandise and again the staff were incredibly friendly and helpful. There were several other stands from the MNDA giving information on research, fundraising, MND Connect/Care etc as well as external exhibitors such as The Head Up Collar, Smartbox technology, Eye Tracking and Communication Matters. |
There were also several therapists offering free head, hand, neck, back and shoulder massages in a private room. You just had to sign up for a slot at various times throughout the day.
There was also a chance to sign up for a Virtual Reality session. You were able to slip out of the conference at your allotted time to attend either of these sessions. I swam with dolphins and it was one of the highlights of my day. It was absolutely incredible, so moving and words cannot express how amazing it felt. There were several speakers at the AGM, who told us about the amazing work the MNDA has been doing, and continues to do, with regards research, fund raising etc. I was shocked and humbled at the massive amount of work and research that is being done all over the world to try and find the cause and ultimately a cure for MND. The absolute highlight of the day for me was during the AGM and listening to Professor Martin Turner from Oxford University. You could tell immediately how committed he was to ultimately finding a cure for MND and despite the very serious subject matter he had the audience crying with laughter several times. I thought he was just wonderful. I would guess there were approximately 200 people at the conference and the vast majority seemed to be people who had a loved one with MND either in the past or at present, AVs or medical professionals in some capacity. There was only a handful of people there who were living with MND and we were honestly treated like royalty. Everyone was incredibly kind. I found the day at times extremely moving but at the same time very uplifting and positive. Everyone attending the conference was 110% committed to supporting people in some way who are living with MND and it felt very reassuring to know all these people 'have your back'! I understand the conference is being held in the same venue on July 13th 2019. If you are able to travel to the East Midlands the conference is well worth a visit. Sally Doherty |
Connor's sponsored swim
I am a very proud of my 16 year old grandson Connor, who decided to do a charity swim for MND Mid Kent.
Hoo Swimming Pool provided a lane for his swim on 23rd December, when he swam 5Km in 1hr 45 mins and raised £635 and counting. Below are his own words on the Just Giving page he set up before he told the family what he was about to do............
" My grandfather sadly died of MND before I was born and my Nan has volunteered for the charity ever since. This Christmas I want to give back to the charity that helped my grandfather all those years ago and continues to help them today. All funds raised will be given back to MND Mid Kent branch as they supported my grandfather before he passed and to help more of the local people still suffering with the disease. "
Linda Blagden
JustGiving |
Mid Kent Support Days at
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Many of our fundraisers are starting to use online sites like “JustGiving” or “Virgin Money” to raise funds for MNDA. Often this is an easier way to reach more “donors and sponsors” for your event, and the “gift aid” is simpler too!
If you are raising money in this way, and want to support the Mid-Kent branch it is important to mention us on your fundraising page. We are a relatively small charity and, where there is no mention of the Mid Kent branch on the page, then all the proceeds of the fundraiser will go to our national office where, unless specified otherwise it could be spent on research, care, campaigning, awareness raising or at the trustees discretion. We have an obligation to ensure that our donors are aware of where their money is being used/spent and therefore if you specifically want to support the Mid- Kent branch (maybe because you have received support from us or know someone who has had support from Mid-Kent) it is important to mention on the just giving page that the money is for Mid-Kent, or to support local people. An example wording for including us in a JustGiving site is shown within the piece above from Connor who raised money for us with his recent swim. So if you want your fundraising monies to come to Mid Kent, supporters, and fundraisers should keep mentioning anywhere you can that the money is being raised for MID KENT! Lynne |
Due to the support, in terms of a grant, from the Kent Community Foundation and the wonderful co-operation from staff at the Heart of Kent Hospice we have been able to establish a monthly, support group at Magnolia Place – the day centre at the Hospice.
We have now had three sessions and in addition to having had a wonderful Christmas lunch and party we have also benefitted from complementary therapy and chiropody services. This is proving to be a very valuable social activity and we will be trying to raise the funds that will enable us to replicate this project in Medway too – so watch this space! |
Carers Group |
Golden Wedding Cruise |
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On Monday 7th January the carers support group met for the first time in 2019. Ten of us enjoyed a lunch together at the Village Hotel and it proved to be a very sociable occasion with plenty of good ideas for what we can do in the future.
All Carers, whether current or previous carers for someone with MND are welcome and we look forward to seeing you at a future event. We aim to meet bi-monthly and our next meeting will be on March 12that 12 noon at The Malta. Please let me know if you can to join us. Annette |
David and Theresa celebrated fifty years together on board the P&O ship "Aurora" in November last year and took to the cruising lark like ducks to water. They thoroughly recommend it as a wonderful holiday.
Among the places they visited were Athens and the Acropolis; Malta; and Gibraltar. David can remember visiting Valetta in the 1970s when he was serving in the RAF and Ronny's Bar was his favourite watering hole, but this time he and Theresa explored the countless small streets and cafes. It was Remembrance Day when they visited Gibraltar and back on board they enjoyed a special service taken by the Aurora's captain. It was t-shirt weather for most of the voyage with the small exception of livelier seas on the home strait! |
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Not to be missed! |
A Summer Outing |
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March 16th Luxury Afternoon Tea and a short AGM!
This year’s AGM will be held at Bower Grove on Saturday 16thMarch at 2.00pm. The formal meeting will be followed by a luxury afternoon Tea and this promises to be a feast! The intention is that this will be a social event for family, friends members and and anyone else you can drag along! Although it is not essential it would be helpful if you can let one of the committee know if you are able to come. |
The Kingfisher Trust is a registered charity which offers trips for disabled people from Wateringbury, up and down the river Medway.
I have booked it for Mid Kent on Tuesday 11th June, 2019. The Kingfisher is a fully adapted boat with a lift and a loo which can take a wheelchair. It can take up to 10 people, but only 1 electric wheelchair or 3 manual ones. If you are interested in joining a small group on a boat trip along the river Medway on June 11thplease let me know. Annette P.S Some passengers have reported seeing real kingfishers. |
Golden Wedding Celebrations
Theresa and Dave on board 'Aurora'
St Mary's Island Christmas Fair
Sheila manning the Mid Kent stand and taking advantage of the opportunity to tell customers about Mid Kent MNDA
The Nail Job!
Annette gave the Thumbs-Up when she received a cheque from Sheila and John Clark – the result of a throw away comment. John had been unwise enough to wonder aloud whether men would rise to the “have your nails painted challenge” as they had to the Ice-Bucket Challenge!
Did the questions ring any bells?
The colourful embroidered banners of St Peter’s church provided a splendid background for a quiz organised by St Margaret’s Ringers in memory of Ray Morgan who had been their Captain. Colin provided some rotten questions and Sheila kept all the papers in order. The Mid Kent branch team under Linda Blagden came an honourable second.
Fund raising by Malling District Scouts
Malling District Scouts who attended an international camp in Kandersteg
Lynne presented a certificate for all Malling District Scouts to some of the scouts who went to the International camp at Kandersteg
USEFUL INFORMATION
Motor Neurone Disease (MND) is the name given to a group of related, but widely varying, diseases affecting the motor neurones in the brain and spinal cord. Motor neurones are the nerve cells that control muscles; hence their degeneration causes weakness and muscle wasting.
MND is usually regarded as progressive but the rate of progression varies greatly from person to person and between the three main types of disease. In the UK it is believed that there are about 6,000 people suffering from MND at any one time.
BEFORE YOU SPEND MONEY ON A PIECE OF EQUIPMENT, CHECK WITH THE APPROPRIATE PROFESSIONAL. IF IT IS SOMETHING THEY DO NOT PROVIDE, SPEAK TO YOUR ASSOCIATION VISITOR OR JOYCE ONSLOW (01634 846330).
WE MAY BE ABLE TO HELP YOU.
Mid Kent Branch covers the ME postcode area except ME13, and includes DA11-13
Meeting place : The Wisdom Wellbeing & Therapy Centre, High Bank, Rochester.
Branch web address - www.midkentmnd.org.uk
OFFICERS
PRESIDENT: Professor David Oliver
VICE PRESIDENT: Mr Colin Thompson, 01634 723677 colinwthompson@btopenworld.com
CHAIRMAN : Miss Annette Scott, 01622 820719 annette.scott4@btinternet.com
PATIENT CARE : Mrs Sheila Thompson, 01634 723677 sheilaathompson@btinternet.com
SECRETARY : Mrs Joan Simpson, 01634 686685 joansimpson@ic24.net
TREASURER : Mrs Lynne Eldred, 01732 845278 lynneeldred@hotmail.com
LOCAL CONTACT : Mrs Joan Simpson, 01634 686685 joansimpson@ic24.net
FUND RAISING : TBA
WEBMASTER : Wendy Buchan wbuchan1@gmail.com
MKM : Miss Jean Lear, 01634 404378 jeanlear@btinternet.com
REGIONAL CARE & DEVELOPMENT ADVISOR : Dr. Cathy Finnis, cathy.finnis@mndassociation.org; MND CONNECT : 0808 8026262
MND is usually regarded as progressive but the rate of progression varies greatly from person to person and between the three main types of disease. In the UK it is believed that there are about 6,000 people suffering from MND at any one time.
BEFORE YOU SPEND MONEY ON A PIECE OF EQUIPMENT, CHECK WITH THE APPROPRIATE PROFESSIONAL. IF IT IS SOMETHING THEY DO NOT PROVIDE, SPEAK TO YOUR ASSOCIATION VISITOR OR JOYCE ONSLOW (01634 846330).
WE MAY BE ABLE TO HELP YOU.
Mid Kent Branch covers the ME postcode area except ME13, and includes DA11-13
Meeting place : The Wisdom Wellbeing & Therapy Centre, High Bank, Rochester.
Branch web address - www.midkentmnd.org.uk
OFFICERS
PRESIDENT: Professor David Oliver
VICE PRESIDENT: Mr Colin Thompson, 01634 723677 colinwthompson@btopenworld.com
CHAIRMAN : Miss Annette Scott, 01622 820719 annette.scott4@btinternet.com
PATIENT CARE : Mrs Sheila Thompson, 01634 723677 sheilaathompson@btinternet.com
SECRETARY : Mrs Joan Simpson, 01634 686685 joansimpson@ic24.net
TREASURER : Mrs Lynne Eldred, 01732 845278 lynneeldred@hotmail.com
LOCAL CONTACT : Mrs Joan Simpson, 01634 686685 joansimpson@ic24.net
FUND RAISING : TBA
WEBMASTER : Wendy Buchan wbuchan1@gmail.com
MKM : Miss Jean Lear, 01634 404378 jeanlear@btinternet.com
REGIONAL CARE & DEVELOPMENT ADVISOR : Dr. Cathy Finnis, cathy.finnis@mndassociation.org; MND CONNECT : 0808 8026262
Motor Neurone Disease Association
Registered Charity Number 294354. Registered in England.
Company Limited by Guarantee No 2007023
Registered Charity Number 294354. Registered in England.
Company Limited by Guarantee No 2007023
