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Mid Kent Matters
Autumn 2018
DATES FOR YOUR DIARY
Saturday September 29th
Patient and Carer Meeting
Wisdom Wellbeing & Therapy Centre, 3.00pm
Saturday October 6th
Sponsored Walk on the North Downs
Registration at 10am, Trosley Country Park, Waterlow Road, Vigo DA13 0SG
Ring Kay on 01634 721160 for details
Saturday October 20th
Quiz Evening in St Peters Hall, Delce, Rochester, 7.30pm
St Margaret’s Bell Ringers. Contact Sheila Thompson 01634 723677
Saturday November 3rd
Come Christmas Shopping at our Christmas Bazaar
Princes Hall, High St. Rochester, 10am – 3pm
Ring Joan (01634 686685) if you would like to help
Saturday November 17th
Patient and Carer Meeting
Wisdom Wellbeing & Therapy Centre, 3.00pm
Speaker : Dr David Oliver
NB. This is a week earlier than usual
Monday December 3rd
Branch Pre-Christmas Meeting -Mince Pies & Fun Quiz
Wisdom Wellbeing & Therapy Centre, 7.30pm
Saturday January 26th
Patient and Carer Meeting
Wisdom Wellbeing & Therapy Centre, 3.00pm
This issue of MKM has been sponsored by Dave Sheridan
Saturday September 29th
Patient and Carer Meeting
Wisdom Wellbeing & Therapy Centre, 3.00pm
Saturday October 6th
Sponsored Walk on the North Downs
Registration at 10am, Trosley Country Park, Waterlow Road, Vigo DA13 0SG
Ring Kay on 01634 721160 for details
Saturday October 20th
Quiz Evening in St Peters Hall, Delce, Rochester, 7.30pm
St Margaret’s Bell Ringers. Contact Sheila Thompson 01634 723677
Saturday November 3rd
Come Christmas Shopping at our Christmas Bazaar
Princes Hall, High St. Rochester, 10am – 3pm
Ring Joan (01634 686685) if you would like to help
Saturday November 17th
Patient and Carer Meeting
Wisdom Wellbeing & Therapy Centre, 3.00pm
Speaker : Dr David Oliver
NB. This is a week earlier than usual
Monday December 3rd
Branch Pre-Christmas Meeting -Mince Pies & Fun Quiz
Wisdom Wellbeing & Therapy Centre, 7.30pm
Saturday January 26th
Patient and Carer Meeting
Wisdom Wellbeing & Therapy Centre, 3.00pm
This issue of MKM has been sponsored by Dave Sheridan
News For People Living With MND
Since I wrote last in Mid Kent Matters, when the days were getting longer and warmer, it is now time to reflect on our many successful events that we have enjoyed together over the Summer period. These I will not refer to here as there are various reports and pictures throughout this Newsletter. However, I will mention the Strawberry Tea which once again was a pleasure to host and an enjoyable afternoon when we were pleased to welcome all including those who visited us for the first time and we now hope to meet with you again soon at some of our other events. It was a cooler and slightly damp afternoon but this did not deter us and there was plenty of lively chatter whilst enjoying afternoon tea.
Referring to the cooler weather leads me to start turning thoughts to preparing to keep warm as the winter months approach. Heating as we all well know is expensive so I have sourced some information that you may find useful if you are faced with high costs for energy services. I have identified here examples of two or three of the schemes which are available, where many people with MND would meet the criteria to apply these are :- British Gas Energy Trust; Power Energy Fund; EDF Energy Trust. The MNDA Benefits line is also available to advise further. Also, at this time of year it is important that both people with MND and their Carer have access to a Flu injection which will be available from your GP surgery shortly (available already in some cases) so do get in touch with your surgery very soon now to arrange an appointment or contact them to arrange a nurse to visit if you cannot attend the surgery. |
Many of you will now be aware that the MND HEAD UP COLLAR is now available [see also article in latest Thumbprint]. There has been some confusion about the ordering process about how and by whom it can be ordered. To clarify, the information from MNDA is as follows: 'The HEAD UP COLLAR should be provided by the NHS and if there are any problems had by the Professional placing the order they should contact MNDA for a Grant for the order and then the Association can charge the NHS.' As far as those with MND supported by Mid Kent Branch are concerned, we will, as we have always done, continue to ensure that equipment etc is provided in a timely manner so please let us know if you encounter any difficulties in supply of not only the Collars but any Equipment or access to any of the Services responsible for your care.
I have recently had enquiries about Power of Attorney and writing of Wills. We did have a talk at a Patient and Carers meeting earlier this year and as a result we do have a contact that we can put you in touch with if you need advice on this matter. Finally, on a lighter note, I now leave you to enjoy reading about what we have been up to over the Summer and looking forward to future events and meetings which are planned for the rest of this year, many of which we hope you will be able to share with us. Sheila |
From The Chair
I hope you have all had a good summer and that if you have not been able to get away that you have benefitted from those lovely, long, sunny days – even if a few were hotter than we may have chosen! So much has happened since our last MKM newsletter and my sincere thanks to all of you who have either organised or supported events for the branch. I am always amazed at the range of events and the number of families who get behind the most hair brained schemes – you are all wonderful. Your help means we can fill the gaps left by statutory services as soon as they are identified and we know from talking to families affected by MND that this practical help really does make a difference. Eye Gaze Technology in Action |
On that note: there have been a number of investigations undertaken by the MND Association into the increased costs that are involved in living with MND and I would like to remind everyone to ask your association visitor if there is anything you need as we may have something we can give or loan you and if not we may be able to make a financial contribution to the costs involved. So please do ask. Finally the best news of the summer was that the research teams around the world are making real advances in using the faulty C9orf72 gene to get closer to their goal of beating MND. They have made significant discoveries into the inherited form of MND and hope that this could hold the key to curing all forms of the disease – wouldn’t that be wonderful. As always, we look forward to seeing you at future events and if you feel you are able to get more involved with the Branch, don’t hesitate to contact me. Annette |
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One of our members, Martin Page, has been featured in an article by Fay Sinclair in Community Health Summer 2018.
It describes how he operates the technology using special software, a large tablet on a table mounted on his wheelchair or table over his bed. His OT Julie Bradford from Kent & Medway Communication & Assistive Technology Service says that Martin’s background as a freelance programmer gave him an advantage over non techies. |
It enables him to generate speech & type messages or select pre-programmed phrases.
If you would like to read the whole article, go to https://www.kentcht.nhs.uk/wp-content/uploads/2018/07/Community-Health-magazine-issue-22.pdf |
Treasurer's report
Thank you to all our supporters and fundraisers for your work in helping to raise funds and make donations to Mid Kent MNDA.
I am pleased to report that over the months from April to the end of August we have received a whopping £17,754 from some fantastic fundraising events, individual and corporate donations and in Memorium receipts! A total of £7,568 from fundraising, the Wine and Wisdom evening, Fish and Chip sales and collecting tin (King and Queen, East Malling), Graham’s Brighton Marathon, lots of plant sales, 100 club tickets sold, coffee mornings…(with cake!), quiz sheet sales, foreign currency collections by Malling District Scouts at an international camp and Little Market, Leybourne, Church collection by St Margaret’s Infants School and from the Pearson Whiffin football tournament. A small proportion of this, £780, has been spent on Branch administration, higher than normal due to our obligation to comply with the new data protection requirements. This also includes the cost of our gazebo and deposit for the Dragon Boat race. The gazebo has been great for raising awareness of MND and also keeping us fit - it weighs a ton! (See picture at top of this piece.) Corporate donations of £6,000 and £470 have come from the Golders Green Foundation and the Waitrose token scheme. We are continuing to support people and their families affected by MND in the Mid Kent Area and our expenditure over the same period has been £11,829. |
Our total expenditure on care over the same period was £9,540. This included a range of therapies for people affected by MND, lifelines and key-safes, quality of life grants, together with provision of the new “Heads Up” collars, and fitting of a sliding door. We have also paid for scooters to be repaired and covered the costs of deliveries and collections of equipment.
Thank you to all of our supporters and fundraisers. If you or anyone you know wishes to donate directly to our account by way of standing order or one-off donations the details are: MNDA Mid Kent, Sort Code 30.96.09 Account Number : 02968567 Finally – Gift Aid …..a tiny proportion of our income comes from Gift Aid at present. If you agree to Gift Aid, it will add 25p to every pound you have donated. If you haven't completed a Gift Aid form and would like to, please do contact me and I am always available for further advice. Thank you Lynne Eldred Update on Foreign and Obsolete Coins Left Over Currency (LOC) will accept any currency, notes or coins and although some may only have scrap value if they are obsolete, they all help as you need to send a decent amount in kilos to get a “deal” on the postage: Between 1-2kg of coin there is a postage cost (which may be reimbursed, not guaranteed) Posting over 2kg is costly - however, if we have 5-10kg then LOC will send a courier to collect - no charge Alternatively we are able to take the coins to them (if visiting London – they are based in Regent Street). Either way the more coins we can collect before sending off, the better the deal. Please ring me if want a tin or already have a full one. Lynne (Treasurer) 01732 845278 |
100 Club Winners
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July 1st prize - Jane Annetts 2nd prize - Peter Lowry August 1st prize – Judie Snow 2nd prize – Kathy Hales September 1st prize – Sophia Treadwell 2nd prize – Sue Copping |
Cake stall at Darent Valley Hospital
Sheila and Darent Valley Hospital staff with information and cakes
Pearson Whiffin Football Tournament
The cups to be won encourage the players getting ready to begin
Strawberry Tea
Everything in the garden was lovely – good company, tea, scones, strawberries, cream and cakes, plenty of seating & shelter from the sun…
…and then it started to rain!
Cakes for Sale!
Earlier this summer, some professional staff at Darent Valley Hospital held an event to raise awareness of MND. As you will see from a picture on an earlier page, they also baked cakes and as well as raising awareness of MND also raised £210 to be shared between Mid Kent and NW Kent Branches. A successful event and a pleasure to work in partnership with the professionals to support People living with MND. Sheila Dragon Boat Race 2018 
On Sunday 1st July MNDA Mid Kent Branch entered a team for the 2nd year in KM Charity Dragon Boat Race at Mote Park.
Our team Coppo's MNDA Mid Kent Heroes were ultra-competitive and achieved the fastest time of the day out of 38 other teams. Unfortunately they weren't able to secure first place in the final and return home with the trophy this year. However, it was an amazing day and the fun was enjoyed by all the team and their families. We raised £1,190 in sponsorship and there will probably be a few pounds still to come. Annette ran a Tombola stall which raised £154 so our Grand Total for the day to date is £1,344. I'd like to take this opportunity to say a big THANK YOU to everyone who gave their time, wore the T-shirts and raised awareness and funds for MNDA Mid Kent. The team is already planning next year - the first Sunday in July - so book it in your diaries NOW, it really is a fun day out and the sun always shines! Sue |
Pearson Whiffin Football Tournament
We are grateful to Pearson Whiffin Recruitment Agency (based in Kings Hill) for including the Mid Kent Branch as their charity of the year. They will be supporting events throughout the year held by the North West Kent, East Kent and Mid Kent Branches. Pearson Whiffin also hold an annual football tournament that took part in June. This was a great, VERY hot, family day out, with a lot of energy being spent on the football pitches! We understand that £5,000 was raised which will be added to the total raised at the end of the year. Thank you to Rob, Paul and all at Pearson Whiffin for the effort put into holding a highly successful event.’ Wendy 
Waitrose Shoppers Chose Us!
We were very lucky to have been nominated for Waitrose Allington's green token scheme again this year. Customers place their token in one of three boxes and it was great to see so many choosing to support Mid Kent. We were thrilled to receive a cheque for £470 from the Allington Branch - thank you to all the staff and customers for their ongoing support! Wendy |
Make it Count!
Paul and Emma with Kahlen and Annette
Paul Wharton and his friends in Norfolk have organised a number of “Punk Music” events over the last few months and have raised a phenomenal £2,671.20 which has been donated to the Branch. Paul is determined to make the theme "Make it Count” reach people in both the UK and Overseas and to raise both funds and awareness of MND. Paul is a real inspiration to us all.
Paul Wharton and his friends in Norfolk have organised a number of “Punk Music” events over the last few months and have raised a phenomenal £2,671.20 which has been donated to the Branch. Paul is determined to make the theme "Make it Count” reach people in both the UK and Overseas and to raise both funds and awareness of MND. Paul is a real inspiration to us all.
Trottiscliffe & Coldrum Barrow Walk
On Saturday 6th October come & enjoy a 4 mile walk which starts and ends on the North Downs. It has steep paths and steps down the escarpment and follows field paths near Coldrum Barrow and Trottiscliffe. Registration is at 10am at Trosley Country Park, Waterlow Road, Vigo DA13 0SG & costs £2 to be paid on the day. Call Kay on 01634 721160 for full details.
Plant stall at Summer Fetes
Joyce and a customer trying to shelter from the blazing sun – and move a few plants! at the Wisdom Hospice Summer Fete in July
Choosing the right plant needed a lot of thought and discussion at the Borstal Summer Fayre in June.
Glorious June Garden
Sun, tea, coffee, cakes, stunning views and a new garden to explore! What more could I have asked for on the glorious June day when June opened her garden in aid of St Alban’s church and Mid Kent MNDA? Answer – nothing! (And as a bonus I sold a few quiz sheets.) The photo elsewhere in MKM does not do justice to it, but should give you some idea of the setting and the other customers and the heat. The garden looks across Blue Bell Hill to Maidstone and the hills beyond and there was always something to watch in the unlikely event of the conversation faltering. Thank you June and your cohort of helpers for sharing your garden with Mid Kent MNDA branch. Jean Car Washing in Rainham On another sunny Saturday Jack Staunch and his colleagues from Rainham Fire Station, gave the people of Rainham the chance to shop and have clean cars all in one visit. As we were setting up and working out the system, one or two people failed to appreciate the opportunity, but they were in the minority and others gave a donation “to a good cause” even though their vehicles were depressingly clean. There were other ways of using the willing labour of Jack and his team. One couple who found a flat battery on returning to their car were pushed the length of the car park to get a jump start and other donations came from parents whose small children grabbed the chance to sit in the cab of one of the fire engines. The collecting buckets were wielded by Diandra and Luisa and our youngest collector, Calvin (Denise’s grandson) who was looking forward to starting school the following Monday, and other friends of the family. |
The water of course came from the fire engines which returned to the station from time to time to refill their tanks. The team had filled up with a large breakfast before beginning work – and after a night shift.
An original and very practical way to raise money for Mid Kent and the Fire Brigade’s own charity. Thank you all very much. Jean 
PS Old girls got to sit in the cab too – and it is a LONG way up!
WALK TO D’FEET parts 1 & 2
This year’s Walk to D’feet organised, as is becoming traditional, by Brenda Sheriden’s family inadvertently came in two parts! Both walks took place in the woodland setting of Shorne Country Park. The first was on Sunday September 2nd and part two was a week later on the 9th - as advertised in the last issue of MKM. About 60 people and several dogs took part over the two days and the weather stayed fine for both. The walkers on the 9th were fuelled with delicious sausage rolls made by Annette, but those on the 2nd had to make do with whatever was provided by the park café. Jennifer (Brenda’s daughter) and one of the organisers told Sheila that they are already planning next year’s walk, (hopefully just the one!) - so put Sunday September 1st in your 2019 diaries please. |
June's Open Garden
Blue sky, sun and a wonderful view over the valley
Waitrose shoppers vote for Mid Kent MND
Wendy accepting Waitrose’s cheque
Car Wash at Rainham Shopping Centre
Applying the elbow grease!
It wasn’t only water that was taken on board!
And still the customers arrived…
2018 Walk to D'Feet - In Two Parts
1st step - registration...
Part 1: Everyone - two feet & four feet- raring to go
Part 2 : More two feet also raring to go
Dragon Boat Race 2018
Gary cheer leading the team - dig those t-shirts!
Coppo’s MND Mid Kent Heroes in action
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UK Tour Answers
I don’t think anyone got irretrievably lost while solving this quiz, as many of the sheets I have received have had several answers the same as mine. I have to confess that I failed to check that AYRE had 4 letters rather than 3 and that it is KIRKBY not KIRBY and there is only one E in BRIDGWATER -which I still think looks wrong! Welshpool
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44. Montrose 45. Newmarket 46. Appledore 47. Stockport 48. Castle Bar 49. Wicklow 50. Bridgewater or Bridgwater 51. Cork 52. Cowes 53. Killarney 54. Sandwich 55. Elgin We are up close and personal for the next quiz as the answers are all parts & sections of the body. Thank you to everyone for taking part and for selling so many sheets to friends and family. Jean Not to be Missed! FUN QUIZ NIGHT On 21st November Liz Presley is running a fun quiz night at The Reliant Fish Restaurant, 4 Queen Street, Gravesend DA12 2EE with the proceeds going to MND Mid Kent and Bloodwise. Ring Annette 01622 820719 for details. WALK ON THE NORTH DOWNS Ring Kay (01634 721160) for full details about her next walk on Sat October 6 at 10am from Trosley Country Park. MID KENT CHRISTMAS BAZAAR On Saturday November 3rd in Princes Hall, Rochester High Street. This year it will be just right for buying early Christmas presents, and cards, etc. QUESTIONS, QUESTIONS St Margaret’s Bell Ringers Quiz Night on Saturday 20th October in St Peter’s Church Hall, Delce, Rochester. Ring Sheila 01634 723677 for details. |
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
