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Mid Kent Matters
Summer 2020 - COVID-19 edition
DATES FOR YOUR DIARY
Mid Kent Christmas Bazaar
Princes Hall, High Street Rochester
Saturday 21st November
The bazaar is the only event that we are sure we will be able to hold, please look out for all other event information on
www.midkentmnd.org.uk and on Facebook or Twitter
When we are able to resume our
Support Groups at the Heart of Kent Hospice and the Wisdom Hospice
we will contact all the people able to attend.
Mid Kent Christmas Bazaar
Princes Hall, High Street Rochester
Saturday 21st November
The bazaar is the only event that we are sure we will be able to hold, please look out for all other event information on
www.midkentmnd.org.uk and on Facebook or Twitter
When we are able to resume our
Support Groups at the Heart of Kent Hospice and the Wisdom Hospice
we will contact all the people able to attend.
The Heart of Kent Ukulele group has been meeting and practising remotely during Lockdown - see what others have been up to inside…
News for People Living with MND
CARE REPORT
I am not sure where to start? What the strangest of times we are living in. I do hope that you and your families have managed to stay safe and have avoided the misery that this virus has created. I know for many people this has been a very challenging and in many ways, frightening time, so I do hope that by the time that this magazine gets to you we are seeing bright lights at the end of the tunnel and we can get back to spending quality time with each other again. I hope it goes without saying, that if you are in need of support please do not hesitate to contact one of us.
The AGM would have been the time I would formally have thanked so many people for supporting the Branch, but as we are not having one this year, I will use this space to say a HUGE thank you to you all. We are so fortunate to have such a brilliant Committee and so many loyal friends. I am so proud to be associated with this Branch and it is only so strong, because as a team we all work together. So “Thank you Everyone for all that you have done over the last year”. I don’t like to single out individuals, but special thanks must go to Lynne, our Treasurer who has done an amazing job in not only tracking our money but also in raising more, and also to Sheila who has led the team of association Visitors so well despite not having back-up from an RCDA since Cathy Finnis left well over a year ago. You are all AMAZING! Looking forward to seeing everyone again soon. Annette |
BRANCH LEAFLETS
It took me three years to get around to designing a Branch Leaflet detailing all our events for the year – only for almost every one of them to be cancelled! Rest assured, we will be running groups and events again as soon as we are able to. As soon as we have positive news about the start of Support Groups, we will ring all those eligible to attend. Otherwise, please keep checking our Twitter or Branch Website pages to find out what is going on, or give me or any of the Committee a call as we will be pleased to have a chat anyway. Annette REGISTER FOR PRIORITY SERVICES NOW! If you, or the person you care for is not already registered as eligible for priority services with the utilities companies, NOW is the time to do it! NB Everyone aged 70 and over is eligible. British Gas Priority services register - www.britishgas.co.uk Tel 0800 294 86004 UK Power networks priority services register - www.powernetworks.co.uk Tel 0800 029 4285 South East Water priority services register - www.southeastwater.co.uk Tel 0333 000 2468 Southern Water priority services register - www.southernwater.co.uk Tel 0800 027 0800 |
Annual Care Report
I hope that you have all come through these last strange and difficult months without too much detriment to your circumstances. Hopefully by the time you read this there might be some light at the end of the tunnel and we might be overcoming this dreadful Covid 19 pandemic, albeit that we will still need to proceed with caution. Please be assured that, as always, we will be here to support you in any way that we can, so do not hesitate to contact your AV or myself for any help or advice you need, particularly in this ongoing situation.
As we have not been able to hold an AGM this year, the following is an attempt to provide an overview of the last year: The Mid Kent Branch currently supports 55 people with MND and their carers and families The past year has presented many challenges but with the loyal support of all our volunteers, supporters and those affected by MND we have faced these and come through stronger and are building on our successes. We are pleased to report that following the success of the Peer Support Group at the Heart of Kent Hospice, we continued our discussions with the Wisdom Hospice to develop a similar model. These were fruitful and thanks to the generous donation from Wendy Clarke and family at last year’s AGM we have been able to fund another very successful Group. Importantly, this Group has also provided the opportunity to rebuild and strengthen what had become fragmented relationships with Health and Social Care Services and Professionals. For both Groups we look forward to being able to meet up again soon so as to provide the valuable social, respite and monitoring of individual needs. |
You will be aware from previous reports in MKM that MND Association Headquarters embarked on a major redesign and restructure project at the end of the year. We were already without the support of a Regional Care and Development Adviser and it has been a long and bumpy road to achieve the positive outcome we are now pleased to report. Ahmed Abdeldayem took up the post as our Area Support Coordinator in April and he has already made us feel positive for the future by his warm, friendly and supportive manner. I leave Ahmed to introduce himself further, elsewhere in this edition.
We now look forward, with Ahmed’s support, to continue with the progress that we have made over the past year in influencing health and social service provider’s support for people affected by MND across Kent and Medway. It is a particularly important time to raise awareness and get MND on the map with the recent merger of the Kent and Medway Clinical Commissioning Groups as it has already been identified by Neurological Groups for the need to redesign outpatient services to enable diagnosis in a timely manner and there are proposals to introduce Neurological Hubs. I have only given a summary in this report. As you will see from the various other reports in MKM, all our members keep very busy in raising funds, campaigning, attending meetings, raising awareness etc and may I take this opportunity of extending a huge ‘Thank You’ to each and everyone of you for your continued support. We look forward to another busy and I hope productive year ahead. Sheila |
Treasurer's report
Well, how things can change! In my last report I mentioned the enjoyment I get from “counting” money! I am certainly looking forward to the day when I can get back to doing just that…counting money! None of our collection tins have been emptied, or possibly even filled with many of them placed in pubs and shops that are currently closed, and many of our fundraising activities have had to be postponed or cancelled for this year; we are therefore having to be a little more inventive with our fundraising, myself and my sons recently did the 2.6 challenge and I understand that the branch is planning an online “virtual quiz”. It goes without saying therefore that we have had very little in the way of income during the last few weeks and yet people with MND need our support now, more than ever. We are doing all we can to continue to provide financial assistance where it is needed; we have contributed towards stairlift installations and servicing, purchased lap trays and Bio bidets, covered the costs for new batteries and servicing of wheelchairs and continue to pay for lifelines, equipment collections, deliveries and maintenance. If you need any other financial assistance, please let us know, we will help where we can.
Thankfully we do hold some reserves to help see us through these “rainy days” (some might say it’s pouring down!). However, once we are out of this lockdown phase and back to some normality we really want to be in a position to get back to offering the level of support we were previously, with therapy treatments and the MND Support group days; we know how invaluable these are to people affected by MND, and are appealing for any help you can give the branch to help us maintain some of these important services. We have included a separate flyer with more information about how you might be able to help us, either with a fundraising activity or donation to our appeal. Any support will be gratefully received and help us to sustain the financial viability of the branch.
During the first part of the year (pre lockdown!) we had a wonderful boost to our balances with many donations, collection tins and fundraising events. We have received a fantastic £7822 from fundraising events and £4204 from corporate and individual donations and in Memorium receipts, making our total income for the period, £12026.
We were fortunate to have been granted £5000 from Kent Community Foundation, £425 from Involve Kent and £960 from the National Lottery 25th Anniversary Fund to be used for the MND support group days.
Thank you to :- Ashford Cattle Market, Sutton Valence Pre School, Waltham Chase Flower Club, St Margaret’s Infant school, Isabella Premble, Chequers Inn Doddington, Little Market Leybourne, Footsies Dance Centre, King and Queen E Malling, Bexleyheath Rock Choir, Maidstone Rotary Club, the General Gordon Masonic Lodge, Jolly Caulkers pub, WH Smith Post Office Maidstone, Jean for quiz sheets, Sue for 100 club, Jane for Ebay sales and of course to everyone for your support and general donations.
Over the same period, we have spent £13592 to support people affected by MND; £4928 of which has been on care, and £5961 on equipment. Our expenditure includes payment for therapies and treatments, the maintenance and repair costs, delivery and collection of equipment and provision of lifelines; we purchased and installed a lift seat, installed and serviced stairlifts, and supplied bio bidets and a call bell. A large portion of our spending, until mid-March, was on the MND support days at the Hospices, which benefit people with MND, through support, therapies and counselling. Branch expenses included the renewal of our Website, printing of a branch information leaflet and preparation costs for the AGM (See separate update).
I hope we will soon be out of lockdown and experiencing a “new normal”; in the meantime thank you for your continued support for MNDA Mid Kent.
Our bank details for anyone wishing to donate directly or via standing order:-
MNDA Mid Kent Sort Code 30.96.09 Account Number : 02968567
Please make any cheques payable to “ MNDA Mid Kent" (These can be sent to me at 4 Grassmere, Leybourne, West Malling, Kent ME19 5QP)
Easy Fundraising
Easyfundraising is a great way for us to earn money; over the last year you have helped to raise £235 for the branch. It’s a great site where you can help Motor Neurone Disease - Mid Kent Branch raise funds simply by doing your everyday online shopping!
Every time you shop, we receive a small donation to say ‘thank you!’ https://www.easyfundraising.org.uk/causes/mndmidkent/
0r
https://www.easyfundraising.org.uk/invite/7H3TVZ/VT9CIE/
Lynne
Thankfully we do hold some reserves to help see us through these “rainy days” (some might say it’s pouring down!). However, once we are out of this lockdown phase and back to some normality we really want to be in a position to get back to offering the level of support we were previously, with therapy treatments and the MND Support group days; we know how invaluable these are to people affected by MND, and are appealing for any help you can give the branch to help us maintain some of these important services. We have included a separate flyer with more information about how you might be able to help us, either with a fundraising activity or donation to our appeal. Any support will be gratefully received and help us to sustain the financial viability of the branch.
During the first part of the year (pre lockdown!) we had a wonderful boost to our balances with many donations, collection tins and fundraising events. We have received a fantastic £7822 from fundraising events and £4204 from corporate and individual donations and in Memorium receipts, making our total income for the period, £12026.
We were fortunate to have been granted £5000 from Kent Community Foundation, £425 from Involve Kent and £960 from the National Lottery 25th Anniversary Fund to be used for the MND support group days.
Thank you to :- Ashford Cattle Market, Sutton Valence Pre School, Waltham Chase Flower Club, St Margaret’s Infant school, Isabella Premble, Chequers Inn Doddington, Little Market Leybourne, Footsies Dance Centre, King and Queen E Malling, Bexleyheath Rock Choir, Maidstone Rotary Club, the General Gordon Masonic Lodge, Jolly Caulkers pub, WH Smith Post Office Maidstone, Jean for quiz sheets, Sue for 100 club, Jane for Ebay sales and of course to everyone for your support and general donations.
Over the same period, we have spent £13592 to support people affected by MND; £4928 of which has been on care, and £5961 on equipment. Our expenditure includes payment for therapies and treatments, the maintenance and repair costs, delivery and collection of equipment and provision of lifelines; we purchased and installed a lift seat, installed and serviced stairlifts, and supplied bio bidets and a call bell. A large portion of our spending, until mid-March, was on the MND support days at the Hospices, which benefit people with MND, through support, therapies and counselling. Branch expenses included the renewal of our Website, printing of a branch information leaflet and preparation costs for the AGM (See separate update).
I hope we will soon be out of lockdown and experiencing a “new normal”; in the meantime thank you for your continued support for MNDA Mid Kent.
Our bank details for anyone wishing to donate directly or via standing order:-
MNDA Mid Kent Sort Code 30.96.09 Account Number : 02968567
Please make any cheques payable to “ MNDA Mid Kent" (These can be sent to me at 4 Grassmere, Leybourne, West Malling, Kent ME19 5QP)
Easy Fundraising
Easyfundraising is a great way for us to earn money; over the last year you have helped to raise £235 for the branch. It’s a great site where you can help Motor Neurone Disease - Mid Kent Branch raise funds simply by doing your everyday online shopping!
Every time you shop, we receive a small donation to say ‘thank you!’ https://www.easyfundraising.org.uk/causes/mndmidkent/
0r
https://www.easyfundraising.org.uk/invite/7H3TVZ/VT9CIE/
Lynne
AGM Financial Report
In the absence of an AGM this year, I have put together a brief summary of the accounts for financial year from January 1st 2019 to December 31st 2019.
Total income for the year was £44,222.52.
£2,048.18 from individual donations
£4,071.43 from corporate donations
£450 from grants
£22,872.13 from a variety of 3rd party fundraising events.
£5,865.35 from committee members’ organised events and activities
£5,213.53 from Reclaimed Gift Aid, Bank interest, Tribute Funds and In Memorium donations
Every donation in 2019, whether large or small, has helped enormously in providing for local people affected by MND and their families.
Total Expenditure for the year was £49,606
£13,868 on financial support
£13,461.66 on the monthly MND support days
£7,240.23 on providing equipment
£1,243.95 for volunteers’ basic expenses
£4,097.50 transferred to National Office for equipment.
£2,991.29 on branch expenditure (IT, Stationary, postage and printing etc)
£12,41.98 on fundraising costs (merchandising items, prizes etc)
Our branch started the 2019 financial year with a balance of £28,153.02 and finished the year with a balance of £22,768.82.
Lynne Eldred
Total income for the year was £44,222.52.
£2,048.18 from individual donations
£4,071.43 from corporate donations
£450 from grants
£22,872.13 from a variety of 3rd party fundraising events.
£5,865.35 from committee members’ organised events and activities
£5,213.53 from Reclaimed Gift Aid, Bank interest, Tribute Funds and In Memorium donations
Every donation in 2019, whether large or small, has helped enormously in providing for local people affected by MND and their families.
Total Expenditure for the year was £49,606
£13,868 on financial support
£13,461.66 on the monthly MND support days
£7,240.23 on providing equipment
£1,243.95 for volunteers’ basic expenses
£4,097.50 transferred to National Office for equipment.
£2,991.29 on branch expenditure (IT, Stationary, postage and printing etc)
£12,41.98 on fundraising costs (merchandising items, prizes etc)
Our branch started the 2019 financial year with a balance of £28,153.02 and finished the year with a balance of £22,768.82.
Lynne Eldred
MID KENT'S FIRST ZOOM COMMITTEE MEETING
Elaine, Campaigns and Fundraising guru; Wendy, Webmaster; Ahmed, ASC; Lynne Treasurer; Annette, Chair; Joan Secretary and Poet and Sheila, Patient Care
We enjoyed a Committee Meeting on Zoom
With Wendy’s help seven of us made it to the “room”
We welcomed Ahmed our new ASC
And hoped we would meet face to face once set free
Time was of the essence 40 minutes allowed we must be quick
So reports from Chair, Secretary, Treasurer, and Patient Care came fast and thick
Cancelled are the AGM, boat trips, carers lunches, its all a bit much
When will we kick this silent enemy into touch
National Office has a loss of income to report
Some of their Staff furloughed or redeployed to care and support
The have made a special appeal to their groups and branches
If we have more funds than we need can we release some what are the chances
So after discussion careful consideration and thought
Yes no problem committee agree we can support
A reasonable sum will wing its way
Anything we can do that will help us all to fight another day
We ended the meeting in the allotted time
Everyone agreed it had worked just fine
But hopefully in the Hospice Green Room we will shortly meet again
Face to face this energetic team, Zoom is really not quite the same!
Joan
We enjoyed a Committee Meeting on Zoom
With Wendy’s help seven of us made it to the “room”
We welcomed Ahmed our new ASC
And hoped we would meet face to face once set free
Time was of the essence 40 minutes allowed we must be quick
So reports from Chair, Secretary, Treasurer, and Patient Care came fast and thick
Cancelled are the AGM, boat trips, carers lunches, its all a bit much
When will we kick this silent enemy into touch
National Office has a loss of income to report
Some of their Staff furloughed or redeployed to care and support
The have made a special appeal to their groups and branches
If we have more funds than we need can we release some what are the chances
So after discussion careful consideration and thought
Yes no problem committee agree we can support
A reasonable sum will wing its way
Anything we can do that will help us all to fight another day
We ended the meeting in the allotted time
Everyone agreed it had worked just fine
But hopefully in the Hospice Green Room we will shortly meet again
Face to face this energetic team, Zoom is really not quite the same!
Joan
INTERNATIONAL MND SYMPOSIUM
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In December 2019, I had the privilege to attend the 30th International Symposium on MND in Perth in Australia. This was the 28th time I had been!
Over 800 people attended from all over the World, and there was the opportunity to share experiences and discuss MND care with a wide variety of people. On the first evening over 400 people took part in the first Global Walk to D’feet MND, when we all walked along the river in Perth for a 5 kilometre walk with a barbie (an Aussie barbeque!) at the end. Perth was very hot throughout the meeting but the walk was most enjoyable and it was wonderful to see everyone involved walking, in wheelchairs, on scooters, from all over the World showing their commitment to MND, and advertising the symposium to the people of Perth. There were several interesting sessions and I would like to highlight some areas of interest: New developments in understanding MND The scientific sessions were looking at new areas and the development of understanding MND. There are no great breakthroughs but there is a greater understanding of the changes in nerve cells. One of the main lectures was on “glymphatics” – channels in the brain which are important in clearing unwanted substances from the brain itself. They are particularly active during sleep and seem to be important in clearing the abnormal substances, like the proteins that are known to develop in MND, and so a greater understanding may be important when looking for new treatments. New treatments There were reports on new drug trials. There are new drugs that may be promising but we are still a long way away from a cure. There are new ways of undertaking drug trials which will allow testing of more drugs and in a speedier fashion. This may prove to be an important way forward. |
One area of development has been in the treatment of one genetic form of MND. In people with the SOD1 gene an abnormal protein develops, which seems to damage nerves cells. A new treatment has been developed called Tofersen which is an anti-sense oligonucleotide – this stops the protein being formed. Initial trials have shown that the drug does seem to reduce the formation of the protein and there was a slowing in the deterioration of the patients receiving the drug. This is still in an early stage and only is relevant to a very small group of MND patients with this abnormal gene – less than 2% of all patients – but may be a really important step for future treatments.
Technology There was a wonderful talk about brain-computer interfaces, when brain signals picked up from the scalp, or sometimes from a sensor put into the brain, are used to control a computer. This is developing and has allowed people to control a computer without any movement, using only their thoughts. Care of people with MND The symposium has some lectures for everyone attending and then the audience splits into more scientific sessions- on the basic science – and sessions on the care of people with MND. There were interesting sessions on the support of family and child carers and on the development of research looking at the importance of diet – maintaining a good diet and not losing weight. This may be an important factor in keeping as well as possible and reducing the risks of the disease. I was able to visit Perth while I was there and I was then asked to speak at a Research Conference in Auckland, in New Zealand. Over 100 people attended a very interesting meeting and I was able to meet up with friends from my previous visits. The next International Symposium was to be in Montreal but has been cancelled due to the uncertainty over Covid 19. However, I am sure that new developments and ideas will be shared and progress made in the understanding and care of MND over the coming year. Prof. David Oliver, Honorary President |
NEW STARTERS
This issue of Mid Kent Matters gives up the opportunity to welcome two new members of staff who have been appointed to support local volunteers and people living with MND in Kent
Ahmed Abdeldayem (pictured elsewhere with some of our Committee) is the Area Support Coordinator who will be covering South London and Kent. His education and professional background has been in healthcare and well-being and he has worked in healthcare charities and in local authorities.
Ahmed’s role is to support groups, branches, volunteers and local services to ensure that people affected by MND are supported and empowered in accordance with their needs.
Rob Wallis, is the Service Development Manager covering London and the South East. Rob has spent the majority of his professional career developing and managing services and programmes that promote health and wellbeing particularly physical activity and has worked across the public, private and charity sectors at national and local levels.
Rob’s role with the MND Association is to develop relationships with service providers, commissioners and decisionmakers to influence and improve services for people with MND. He will be able to build on the sterling work carried out by Sheila during the last two years. Rob will work closely with Ahmed, in particular on escalated cases of concern and implement plans to improve the quality of services.
They both look forward to working with Mid Kent so that we can continue to improve the quality of life for all people living with and affected by MND.
Ahmed Abdeldayem (pictured elsewhere with some of our Committee) is the Area Support Coordinator who will be covering South London and Kent. His education and professional background has been in healthcare and well-being and he has worked in healthcare charities and in local authorities.
Ahmed’s role is to support groups, branches, volunteers and local services to ensure that people affected by MND are supported and empowered in accordance with their needs.
Rob Wallis, is the Service Development Manager covering London and the South East. Rob has spent the majority of his professional career developing and managing services and programmes that promote health and wellbeing particularly physical activity and has worked across the public, private and charity sectors at national and local levels.
Rob’s role with the MND Association is to develop relationships with service providers, commissioners and decisionmakers to influence and improve services for people with MND. He will be able to build on the sterling work carried out by Sheila during the last two years. Rob will work closely with Ahmed, in particular on escalated cases of concern and implement plans to improve the quality of services.
They both look forward to working with Mid Kent so that we can continue to improve the quality of life for all people living with and affected by MND.
LOCKDOWN with MID KENT
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Faced with filling a magazine and with little or no fund-raising to report, I decided to include reports on how some of you have been spending your incarceration. Jan started the ball rolling with her thoughts about Spring It is lovely to watch what is growing in the gardens. It is lovely time of year. My friend puts pictures of her daily walks through a country park which is local to her. I wish though I could travel out to see the bluebells bursting out in the woods. I just love the wonderful “sea “ of blue they make. Jan W 
And then I was sent this photo of Amelie carrying Daisie (you can just see her head and tail) on a walk through a bluebell wood near Loose.
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The patients and carers I’ve spoken to are looking forward to the resumption of days in the hospice and the carers group get-to-gethers but in the meantime they are phoning their MND friends. They are very pleased and grateful that the hospice has kept in touch with them. The Heart of Kent ukulele group is “meeting” each week and practising via Zoom, - and I’m looking forward to the concert.
Today after 5 weeks I drove my car (would it start – it did!) for a necessary Clinic appointment. There was more traffic than I expected but the clinic was almost empty and I wore rubber gloves and a scarf over my face. Back in lockdown, my hedgehog gives me something to look forward to each night - now for coffee! Joyce |
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TOMATO PLANTS
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CULINARY ACTION AND MORE
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I have been busy potting up lots of tomato and cucumber plants and they have sold like hot cakes - sales have reached £208 and have a few plants waiting to grow big enough to be put out for sale. Thanks for the used flower pots but I have now run out again!!!
I also completed the world’s smallest jigsaw which was truly horrible - I will get you back Chris Avery! Annette 
WHAT WE DID WHEN WE COULDN’T DO ANYTHING ELSE!
My Grandson sent me the picture and pattern of these hearts to knit for an NHS appeal So I am now busy knitting some to send to Darenth hospital from where we heard of the appeal. Each pair of hearts needs to be put in an envelope and when the Hospital receives them the are left for 72hrs to observe infection control regulations The idea is one is given to a patient in hospital and the other to the family at home who cannot be with them so that it keeps a connection between them. Sheila 
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The last few weeks have been so strange, being stuck at home and not going out. Several conferences have been postponed or cancelled and one conference, which was to have been in Paris in May is now going to be a “virtual congress” – all on line and I am working on a “talk” which will be recorded and played with slides.
I have taken up some cooking during the lockdown. Some of you know that my culinary skills are limited but if cake or biscuits are involved, they improve! The Branch cookbook has my version of chocolate squares, which was first introduced to me at Branch bazaars many years ago. While buying my morning paper in the local corner shop I noticed a tin of condensed milk! I looked up their recipe site and I have been making chocolate caramel flapjack and chocolate crunchie cakes. Cornflake or Rice Krispies crunchies are planned for the weeks ahead. I have also used the opportunity to sort out my study and I have become re-acquainted with the colour of my carpet, as the books and papers are now on the shelves in their proper place! Lack of physical shopping has led to an increase in on-line retail activity and this has also helped the Branch, as by using the Easy Fundraising site a small percentage is raised for the Branch. Although it is often only a few pence each time over the last few weeks I have raised up to £1 a week and have had a few bigger rewards and so my total raised is now nearly £150. Do give it a go! – every little helps!! All you have to do is to register on the Easy Fundraising site and let them know when you are buying on-line and they do the rest for you! (Full details can be found in the Treasurers Report). My best wishes for you all to keep safe and keep well! David Oliver |
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HOW IT ALL BEGAN
My exercise every other day has been a 5k run, on Easter Monday I saw 2 robins on the route and finished in under 30 minutes for the first time in about 3 years... Playing lots of board games, including a game with my son's girlfriend on video link, and got in a tangle with a game of twister! Watching every Marvel film from the start (all 22 of them) and finally understanding who each character is! Clapping on a Thursday at 8pm for the NHS, dancing on my doorstep at 7pm every Saturday with my neighbours whilst enjoying a pink Gin 😂. Lynne E NATURAL WORLD This female Sparrowhawk joined me for lunch one day, but unlike her I didn’t dine on a baby bird! If I hadn’t been self-isolating, I’d have missed her. Jean 
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VILLAGE SUPPORT
We ran a quiz on Zoom for a few people in the village and those who joined in seemed to enjoy it - it certainly gave us all something other than the virus to think about! We'll probably do another one once we've recovered! I've ordered myself a jigsaw puzzle! It'll be the first one I've done for years. (If you’d known, you could have bought one at our MND Bazaar!) Our village is a very friendly and supportive community and neighbours have been looking out for each other, making sure those classified as vulnerable, or who can't get out, are getting what they need. The Parish Council circulated a leaflet to most households in the village, providing information on where to get help etc and 2 Councillors have volunteered to act as contacts for shopping, collecting prescriptions and so on. As well as the quiz, my choir rehearsals and Pilates classes are also now delivered via Zoom and I think the current situation has really shown how essential online communication has become. Elaine |
Let's Go Travelling - if only!
Little did I know what a tantalising subject this would be when I sent out the new sheets in January. Heigh ho it will have helped to keep to keep many people amused over the past weeks of incarceration. The returning sheets with their kind comments and donations have certainly kept my spirits up. Everyone seemed to enjoy the topic and there were lots of all correct (ie same as mine!) answers.
1. Kiev 29. Zurich 2. Antwerp 30. Pisa 3. Belgrade 31. Rotterdam 4. Naples 32. Salzburg 5. Marseilles 33. Luxembourg 6. Copenhagen 34. Sarajevo 7. Oslo 35. Seville 8. Cordoba 36. Moscow 9. Florence 37. Rome 10. Ghent 38. Stockholm 11. Haarlem 39. Turin 12. Paris 40. Velletta 13. Bratislava 41. Amazon 14. Helsinki 42. Zambezi 15. Budapest 43. Seine 16. Lisbon 44. Danube 17. Zagreb 45. Oder 18. Madrid 46. Congo 19. Brussels 47. Ganges 20. Milan 48. Indus 21. Athens 49. Mississippi 22. Minsk 50. Severn 23. Warsaw 51. Yangtse 24. Sofia 52. Hudson 25. Munich 53. Yellow 26. Bucharest 54. Tamar 27. Nice 55. Tees 28. Orleans |
The next sheet, Sweet Somethings is ready now – I just hope it doesn’t encourage you all to gain weight, after your enforced stay at home. Lockdown has meant that many of our fund raising events have had to be cancelled, so remember a quiz sheet helps to exercise the brain as well as being social distancing friendly! Please ring me to discuss methods of distribution (01634 404378 or email me on jeanlear@btinternet.com )
Jean 100 Club Winners & Subscription Renewals
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V.E. DAY BELLS
Joyce’s brother Robin single-handedly rang a peal of three bells, during their village’s social distancing tea parties. 
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TWO SISTERS FUND RAISE FOR MNDA
My wife Kay Ord and her sister Amanda Perring have been training hard for fund raising events which were due to take part over the weekend 28/29th March. Due to the coronavirus pandemic these events were postponed. Amanda was to run a half marathon in central London starting in the Mall and passing Nelson’s column, the London Eye, St Pauls Cathedral, Tower of London, and finishing at Westminster. On the due day, she ran the thirteen miles locally in Cornwall using an app on her phone to log the event and raised £600 for the MND association. Kay was due to take part in the Great Hospital Hike on 28th March, starting at Kings College Hospital, and walking 17 miles via parks and scenic paths to Royal University Hospital South Bromley. In spite of coronavirus, she has raised over £543 for KCHF and £300 for MND association. I have raised £50 for MND on behalf of Kay’s efforts. Neil Ord
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100 CLUB RENEWAL FORM
Rosie the Therapy Dog
Janet Bates one of our Association volunteers and her dog Rosie, a beautiful Cavapoochon, have completed their ‘Therapy Pet’ training with flying colours and will now be regular visitors at the Heart of Kent MND Support Days. Rosie even brings her own box, which means that she can get as high as she needs to make sure she gets plenty of cuddles from everyone even when they are in a wheelchair. I suspect this is going to be one spoilt pooch when she is finally able to return to work.
Sixth Form Charity Week
During the Sixth Form Charity week at Fort Pitt Grammar School, Westwood House chose to support our Mid Kent branch. I was pleased and proud to collect the £425.59, which they raised, from the house captain Rosie and Connor and Teagan her deputies. Many thanks to all of them.
Again, I was a proud grandmother.
Linda
Again, I was a proud grandmother.
Linda
More Lockdown Activity
Linda painted her garden wall- she will remember her incarceration every time she sees that disgruntled toad in the top left hand corner!
BIRDIE BULLYING & LOCKDOWN MEALWORM BONANZA
I have always enjoyed watching the birds in the garden or out in the countryside. I started feeding the birds in my garden a couple of years ago but have struggled with piggy pigeons and menacing magpies and often flap a tea towel out of the back door with the hope of guarding the food for the small birds. I think the small birds are grateful for my antics as I now have a quite tame pair of blackbirds, a brave pair of robins and numerous sparrows who visit several times a day. However the flip side of this achievement is that I am now bullied by Mrs Blackbird on a regular basis. She sits on the fence outside my kitchen window looking at me daring me not to go out with her mealworms as soon as I notice her and if I don’t jump to order she runs closer to the window peering at me whilst making quite a racket. I was running a bath the other day and made the mistake of opening the window and there she was on the fence looking up at me almost stamping her feet running back and forth until I turned off the taps and went out to feed her, saying to her “I don’t believe I’m doing this”, particularly as still in my night attire! Last week I was sawing some timber behind my garden and could hear her making a racket on the fence and I said out loud “You’ll just have to wait until I’ve finished this piece” but no, she came out to me landing perhaps 6 feet away and just looked at me so I stopped sawing and went back indoors to get her mealworms. The robin is less demanding as much more timid but has the annoying habit of waiting for me to take out some tasty morsels only to take just one and fly away, I have now learned not to provide a lavish spread for him/her Lock down has been a boon time for the birds as they have me feeding to order throughout the day when I would usually be out at work so hopefully they will have raised healthy young before I am back on the road. I think I may start restricting their feeding times so that they also find their own food as they will have to do once I return to work.
Jane
TECHNOLOGY IN LOCKDOWN
As for what I’ve been doing during lockdown - well, I’m still working (albeit at home) but we have a daily video meeting, which I brightened up by painting my face. (Sorry, the photos are not a good enough quality to publish!). We do weekly quiz evenings with friends and regular Bingo games with my mum using FaceTime, but it’s no substitute for being able to give someone a hug - roll on the time when we can do just that.
Wendy
BIRDIE BULLYING & LOCKDOWN MEALWORM BONANZA
I have always enjoyed watching the birds in the garden or out in the countryside. I started feeding the birds in my garden a couple of years ago but have struggled with piggy pigeons and menacing magpies and often flap a tea towel out of the back door with the hope of guarding the food for the small birds. I think the small birds are grateful for my antics as I now have a quite tame pair of blackbirds, a brave pair of robins and numerous sparrows who visit several times a day. However the flip side of this achievement is that I am now bullied by Mrs Blackbird on a regular basis. She sits on the fence outside my kitchen window looking at me daring me not to go out with her mealworms as soon as I notice her and if I don’t jump to order she runs closer to the window peering at me whilst making quite a racket. I was running a bath the other day and made the mistake of opening the window and there she was on the fence looking up at me almost stamping her feet running back and forth until I turned off the taps and went out to feed her, saying to her “I don’t believe I’m doing this”, particularly as still in my night attire! Last week I was sawing some timber behind my garden and could hear her making a racket on the fence and I said out loud “You’ll just have to wait until I’ve finished this piece” but no, she came out to me landing perhaps 6 feet away and just looked at me so I stopped sawing and went back indoors to get her mealworms. The robin is less demanding as much more timid but has the annoying habit of waiting for me to take out some tasty morsels only to take just one and fly away, I have now learned not to provide a lavish spread for him/her Lock down has been a boon time for the birds as they have me feeding to order throughout the day when I would usually be out at work so hopefully they will have raised healthy young before I am back on the road. I think I may start restricting their feeding times so that they also find their own food as they will have to do once I return to work.
Jane
TECHNOLOGY IN LOCKDOWN
As for what I’ve been doing during lockdown - well, I’m still working (albeit at home) but we have a daily video meeting, which I brightened up by painting my face. (Sorry, the photos are not a good enough quality to publish!). We do weekly quiz evenings with friends and regular Bingo games with my mum using FaceTime, but it’s no substitute for being able to give someone a hug - roll on the time when we can do just that.
Wendy
Physical Action and Fund Raising in Lockdown
Carl, Harvey & Lynne coming up to the finishing line
So HOW did we run...we started at 10.30am with 2.6k laps of our village, in the following order, the idea being to run a total of 26K :-
Lap 1 Carl; Lap 2 Lynne and Carl; Lap 3 Harvey; Lap 4 Lynne; Lap 5 Carl; Lap 6 Harvey and Carl; Lap 7 Lynne; Lap 8 Harvey; Lap 9 Carl;
AND FINALLY Lap 10 Lynne, Carl and Harvey (plus a few neighbours)
We set up some bunting and banners outside our house and had told friends and two local facebook pages Leybourne Village and Leybourne Village Community of our plans. We wanted the local community to be aware of our event so that they did not think we were doing anything that went against the current lockdown rules! One of my neighbours had agreed to take a photograph of us at the start and was planning to do the same for our last lap of the village.
However....when we came outside our house at 10.15am, all our neighbours were out ready to cheer us on, (at least 6 households, all in their gardens waiting for us to set off), and they stayed outside cheering, clapping and supporting us throughout the challenge, (which took 2hours 14 minutes!), and then remained outside their houses celebrating with us into the early evening!
It was an absolutely amazing day with so much support from the whole community, work colleagues, friends and neighbours and friends of friends, it brought everyone together. Many of the neighbours knew my husband Paul and so did the wider community, I work at the local school and the staff also supported us with donations, waves, cheers and messages.
During the second lap one neighbour followed us on his bike and took some great pictures which he put together in a short video.
On the last lap a few of our neighbours joined in (each socially distancing families from each other) and other neighbours had set up a finishing line for us to run under. It truly was an amazing experience and the total raised is a fantastic £1805.55. The amount raised includes £54.10 in cash donations, plus one of my neighbours added the MND button on her page so there is another £60 that may go direct to National Office.
Lynne
Lap 1 Carl; Lap 2 Lynne and Carl; Lap 3 Harvey; Lap 4 Lynne; Lap 5 Carl; Lap 6 Harvey and Carl; Lap 7 Lynne; Lap 8 Harvey; Lap 9 Carl;
AND FINALLY Lap 10 Lynne, Carl and Harvey (plus a few neighbours)
We set up some bunting and banners outside our house and had told friends and two local facebook pages Leybourne Village and Leybourne Village Community of our plans. We wanted the local community to be aware of our event so that they did not think we were doing anything that went against the current lockdown rules! One of my neighbours had agreed to take a photograph of us at the start and was planning to do the same for our last lap of the village.
However....when we came outside our house at 10.15am, all our neighbours were out ready to cheer us on, (at least 6 households, all in their gardens waiting for us to set off), and they stayed outside cheering, clapping and supporting us throughout the challenge, (which took 2hours 14 minutes!), and then remained outside their houses celebrating with us into the early evening!
It was an absolutely amazing day with so much support from the whole community, work colleagues, friends and neighbours and friends of friends, it brought everyone together. Many of the neighbours knew my husband Paul and so did the wider community, I work at the local school and the staff also supported us with donations, waves, cheers and messages.
During the second lap one neighbour followed us on his bike and took some great pictures which he put together in a short video.
On the last lap a few of our neighbours joined in (each socially distancing families from each other) and other neighbours had set up a finishing line for us to run under. It truly was an amazing experience and the total raised is a fantastic £1805.55. The amount raised includes £54.10 in cash donations, plus one of my neighbours added the MND button on her page so there is another £60 that may go direct to National Office.
Lynne
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 SHEILA THOMPSON (01634 723677).
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
CAMPAIGNS CONTACT: Mrs Elaine Coates, 07884 355423 elainep.coates@hotmail.co.uk
LOCAL CONTACT : Mrs Joan Simpson, 01634 686685 joansimpson@ic24.net
FUND RAISING : TBA
MKM : Miss Jean Lear, 01634 404378 jeanlear@btinternet.com
AREA SUPPORT COORDINATOR: Mr Ahmed Abdeldayem, 01604 800651 ahmedabdeldayem@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 SHEILA THOMPSON (01634 723677).
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
CAMPAIGNS CONTACT: Mrs Elaine Coates, 07884 355423 elainep.coates@hotmail.co.uk
LOCAL CONTACT : Mrs Joan Simpson, 01634 686685 joansimpson@ic24.net
FUND RAISING : TBA
MKM : Miss Jean Lear, 01634 404378 jeanlear@btinternet.com
AREA SUPPORT COORDINATOR: Mr Ahmed Abdeldayem, 01604 800651 ahmedabdeldayem@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
