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Mid Kent Matters
Summer 2021
DATES FOR YOUR DIARY
21st JUNE
MND/ALS GLOBAL AWARENESS DAY
UNITED IN OUR VISION FOR A WORLD FREE FROM MND
Virtual Support Group Meetings will continue until we get the green light for face to face sessions, when we will
SHOUT IT FROM THE ROOFTOPS!
Wisdom Hospice Support Group
2nd and 16th June; 7th and 21st July; 4th and 18th August; 1st and 15th September;
6th and 20th October
Heart of Kent Hospice Group
11th and 25th June; 9th and 23rd July; 6th and 20th August; 3rd and 17th September;
1st and 15th October
Yoga Sessions on Zoom
25th May; 8th June; and 22nd June
Mid Kent Carers Meetings
Monday July 5th
Kent Carers Meetings
3rd June, 1st July, 5th August, 2nd September, 7th October
Full details of all meetings, including times and contact details are included on the inside pages
MND/ALS GLOBAL AWARENESS DAY
UNITED IN OUR VISION FOR A WORLD FREE FROM MND
Virtual Support Group Meetings will continue until we get the green light for face to face sessions, when we will
SHOUT IT FROM THE ROOFTOPS!
Wisdom Hospice Support Group
2nd and 16th June; 7th and 21st July; 4th and 18th August; 1st and 15th September;
6th and 20th October
Heart of Kent Hospice Group
11th and 25th June; 9th and 23rd July; 6th and 20th August; 3rd and 17th September;
1st and 15th October
Yoga Sessions on Zoom
25th May; 8th June; and 22nd June
Mid Kent Carers Meetings
Monday July 5th
Kent Carers Meetings
3rd June, 1st July, 5th August, 2nd September, 7th October
Full details of all meetings, including times and contact details are included on the inside pages
FROM THE CHAIR
By the time this newsletter comes crashing through your letterbox I hope many of us will have already had the chance to either renew friendships or to meet up for the first time. Whichever it is, I am looking forward to seeing you all.
Getting back to normal will seem strange after so long and it may be some time before our group sessions and social activities can all take place as they used to, but hopefully everyone will feel confident enough to begin to socialise again in which ever ways that feel safe and comfortable. If there is anything you want us to do or change to help you to feel confident about meeting up don’t hesitate to let us know.
Although the last eighteen months have been really challenging there have been some positive outcomes and there is no doubt that as people have engaged more with technology and social media, awareness raising of MND has never been higher. Thanks to the support of many high profile sports personalities fundraising has been amazing and this has encouraged many people to get involved at a branch level - we continue to be so grateful to all those people who choose to raise funds for us. It really is much appreciated and helps us to make a difference. So thank you.
I am sure you will have heard about the exciting developments that are emerging on the research front and hopefully the campaign to get the government to invest £50,000 over the next five years will be the catalyst to finding treatments and a cure for MND. The message from the experts is no longer IF this will happen but WHEN - so if you are like me I am watching this space with interest and optimism.
Annette
Getting back to normal will seem strange after so long and it may be some time before our group sessions and social activities can all take place as they used to, but hopefully everyone will feel confident enough to begin to socialise again in which ever ways that feel safe and comfortable. If there is anything you want us to do or change to help you to feel confident about meeting up don’t hesitate to let us know.
Although the last eighteen months have been really challenging there have been some positive outcomes and there is no doubt that as people have engaged more with technology and social media, awareness raising of MND has never been higher. Thanks to the support of many high profile sports personalities fundraising has been amazing and this has encouraged many people to get involved at a branch level - we continue to be so grateful to all those people who choose to raise funds for us. It really is much appreciated and helps us to make a difference. So thank you.
I am sure you will have heard about the exciting developments that are emerging on the research front and hopefully the campaign to get the government to invest £50,000 over the next five years will be the catalyst to finding treatments and a cure for MND. The message from the experts is no longer IF this will happen but WHEN - so if you are like me I am watching this space with interest and optimism.
Annette
CARE REPORT
As I write this the sun is shining, the gardens are looking refreshed after some, much needed, rain and there are ever increasing signs of Spring and new beginnings. Finally, there are some positive signs that we will be able to start planning to meet together again.
Meanwhile, it continues to be a pleasure to meet with many of you over Zoom and, once again, if you have not yet joined us the invitation, as always, is open to all and we may also continue with the occasional Zoom Meeting in the future even when we are meeting face to face again.
There continues to be much going on in the MND Community both nationally and locally. No doubt many of you would have seen the fund-raising events and challenges highlighted in the media and thank you to all who have participated or are planning to participate in any way in these.
Various campaigns by the MND Association are ongoing. ‘Act to Adapt’, ‘Scrap 6 Months’, ‘United to end MND’ are to name just a few. If you are invited to take part by providing information, e-mailing an MP, etc, I encourage you to do so as it is your voices that need to be heard and carry the most weight. Please do contact me or any of our Volunteers if you need any further information or help in these or any other matters.
The MND Association publishes a wide variety of information resources which are available on-line or can be obtained on request by hard copy. If you require guidance on this information, please contact a Branch Volunteer or MND Connect helpline (0808 8026262).
The MND Association can also loan Communication Aids, including voice banking equipment and can give advice on low cost or free Apps. If you have your own equipment and wish to get started on voice banking and would welcome some friendly, local support, Lin, one of our Volunteers is on hand to help. So, please do contact Annette or myself and we will put you in touch. If you have questions about any of the above or need further advice about any aspects of your care, please see the contact numbers on the back page of this MKM and get in touch with one of us.
Looking forward to meeting again with you all before too long.
Best Wishes, Sheila
Meanwhile, it continues to be a pleasure to meet with many of you over Zoom and, once again, if you have not yet joined us the invitation, as always, is open to all and we may also continue with the occasional Zoom Meeting in the future even when we are meeting face to face again.
There continues to be much going on in the MND Community both nationally and locally. No doubt many of you would have seen the fund-raising events and challenges highlighted in the media and thank you to all who have participated or are planning to participate in any way in these.
Various campaigns by the MND Association are ongoing. ‘Act to Adapt’, ‘Scrap 6 Months’, ‘United to end MND’ are to name just a few. If you are invited to take part by providing information, e-mailing an MP, etc, I encourage you to do so as it is your voices that need to be heard and carry the most weight. Please do contact me or any of our Volunteers if you need any further information or help in these or any other matters.
The MND Association publishes a wide variety of information resources which are available on-line or can be obtained on request by hard copy. If you require guidance on this information, please contact a Branch Volunteer or MND Connect helpline (0808 8026262).
The MND Association can also loan Communication Aids, including voice banking equipment and can give advice on low cost or free Apps. If you have your own equipment and wish to get started on voice banking and would welcome some friendly, local support, Lin, one of our Volunteers is on hand to help. So, please do contact Annette or myself and we will put you in touch. If you have questions about any of the above or need further advice about any aspects of your care, please see the contact numbers on the back page of this MKM and get in touch with one of us.
Looking forward to meeting again with you all before too long.
Best Wishes, Sheila
TREASURERS REPORT
As we come to the end of another lockdown hopefully it won’t be too long before we can start to get back to meeting face to face and enjoy some of our usual fundraising events and activities. I have missed the coffee mornings with cake! well not the coffee as I am a tea drinker, but I do miss the cake! Mid Kent started the year with a healthy balance, thanks in part to the online fundraising activities, like zoom quizzes that our supporters organised and took part in last year, and together with donations that were made via our Justgiving page or direct to our bank account. The pandemic has made us think differently about the way that we fundraise and in 2021 we will be looking at more new ways to raise funds in a “cashless” way as people are moving away from wanting to pay for things with cash. Many thanks to everyone who has continued to support us with your online donations via Justgiving and tribute pages, by standing orders or bank transfers direct to our account. Please get in touch (my contact details are on the back page of this magazine) if you wish to gift aid any donations that are made directly to our account, we receive an extra 25p for every £1 donated via Gift Aid which really does make a difference to our funds.
Please also contact any Committee Member if you have an idea for fundraising and need help with setting up a Justgiving page or if you would like any materials to support your event (eg. balloons, banners, or T Shirts). As always we commit to using every penny raised or donated, to support people diagnosed with MND so no one feels alone. Your donations and fund raising will help us to continue to provide this support.
During the first months of 2021 our general donations and Gift Aid totalled £1546 and from fundraising events, our supporters have raised a fantastic £1675! We have gratefully received just over £4200 from corporate donations and grants, our “In memoriam” donations and tribute funds came to £2355, and with Branch fundraising of £924 our total income for the period was £10748
Our Thanks go to :- Maidstone Borough Council (winter grant), Rotary Club Maidstone, Leybourne convenience stores, the General Gordon Masonic Lodge, WH Smith Post Office Maidstone, Jacqui Jefferson for a sponsored swim, Jean for quiz sheets, Big Steps of Hope, our Easyfundraising “spenders” and of course to everyone for your support and general donations.
Over the same period, we have spent £12203 to support people affected by MND; £6310 of which has been on care, and £4152 on equipment. Our care costs have included quality of life grants and therapies for people with MND and their carers. We have also assisted with heating and fuel costs and helped with hot meals and food vouchers, paid for from grants from Maidstone Borough Council. We have contributed towards home adaptations, stairlifts, bio bidets, pillow lifts, arm supports, ramps and small equipment items, paid for the provision of lifelines and covered the maintenance and repair costs, delivery and collection of equipment. We have also transferred £7100 from one of our restricted funds (from donations in memory of Alex Ward) to MNDA National Office for research as requested by the family.
Lynne
As we come to the end of another lockdown hopefully it won’t be too long before we can start to get back to meeting face to face and enjoy some of our usual fundraising events and activities. I have missed the coffee mornings with cake! well not the coffee as I am a tea drinker, but I do miss the cake! Mid Kent started the year with a healthy balance, thanks in part to the online fundraising activities, like zoom quizzes that our supporters organised and took part in last year, and together with donations that were made via our Justgiving page or direct to our bank account. The pandemic has made us think differently about the way that we fundraise and in 2021 we will be looking at more new ways to raise funds in a “cashless” way as people are moving away from wanting to pay for things with cash. Many thanks to everyone who has continued to support us with your online donations via Justgiving and tribute pages, by standing orders or bank transfers direct to our account. Please get in touch (my contact details are on the back page of this magazine) if you wish to gift aid any donations that are made directly to our account, we receive an extra 25p for every £1 donated via Gift Aid which really does make a difference to our funds.
Please also contact any Committee Member if you have an idea for fundraising and need help with setting up a Justgiving page or if you would like any materials to support your event (eg. balloons, banners, or T Shirts). As always we commit to using every penny raised or donated, to support people diagnosed with MND so no one feels alone. Your donations and fund raising will help us to continue to provide this support.
During the first months of 2021 our general donations and Gift Aid totalled £1546 and from fundraising events, our supporters have raised a fantastic £1675! We have gratefully received just over £4200 from corporate donations and grants, our “In memoriam” donations and tribute funds came to £2355, and with Branch fundraising of £924 our total income for the period was £10748
Our Thanks go to :- Maidstone Borough Council (winter grant), Rotary Club Maidstone, Leybourne convenience stores, the General Gordon Masonic Lodge, WH Smith Post Office Maidstone, Jacqui Jefferson for a sponsored swim, Jean for quiz sheets, Big Steps of Hope, our Easyfundraising “spenders” and of course to everyone for your support and general donations.
Over the same period, we have spent £12203 to support people affected by MND; £6310 of which has been on care, and £4152 on equipment. Our care costs have included quality of life grants and therapies for people with MND and their carers. We have also assisted with heating and fuel costs and helped with hot meals and food vouchers, paid for from grants from Maidstone Borough Council. We have contributed towards home adaptations, stairlifts, bio bidets, pillow lifts, arm supports, ramps and small equipment items, paid for the provision of lifelines and covered the maintenance and repair costs, delivery and collection of equipment. We have also transferred £7100 from one of our restricted funds (from donations in memory of Alex Ward) to MNDA National Office for research as requested by the family.
Lynne
MID KENT 100 CLUB
The 100 club is a method of fundraising for our Mid Kent Branch. It is an opportunity for giving with the added benefit of possibly winning a prize. The 100 club runs from July to June so if you would like to join for 2021 please fill in the enclosed leaflet and return to Sue Copping – if you have already set up a standing order for the 100 club then you don’t need to do anything as your numbers will be reallocated automatically.
Good Luck!
Annette
The 100 club is a method of fundraising for our Mid Kent Branch. It is an opportunity for giving with the added benefit of possibly winning a prize. The 100 club runs from July to June so if you would like to join for 2021 please fill in the enclosed leaflet and return to Sue Copping – if you have already set up a standing order for the 100 club then you don’t need to do anything as your numbers will be reallocated automatically.
Good Luck!
Annette
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100 CLUB WINNERS
The latest winners are:- March 1st 82 Lesley Sargeant 2nd 52 Dr David Oliver April 1st 83 Jim Stevens 2nd 99 Sheila Howe May 1st 72 Jill Montgomery 2nd 18 Carl Eldred |
BOAT TRIPS
Do you fancy a day out on the river? Good company, a lovely lunch and the possibility of seeing a kingfisher. We have booked 3 trips on the River Medway sailing on the “Kingfisher” (so you will definitely see at least one!) which is wheelchair accessible. The trip will take place on Friday 9th July, Wednesday 18th August and Friday 20th August. The trip starts at the Medway Wharf Marina at Wateringbury, ME18 5ED. The boat has a lift and a large accessible toilet. It can accommodate up to 12 people on any trip including up to 3 manual wheelchairs or 1 electric wheelchair (provided they are not larger than 100cms long or 80cms wide). The boat will leave the Marina at 10.00am ( boarding will take place from 9.45) and will return at 2.00pm. A delicious picnic lunch will be provided. Car parking is available at the Marina. Anyone with MND is invited along with a guest. In order that I can plan the days would you please phone or email me if you want to reserve a place - letting me know whether you will be bringing a wheelchair or if you have any special dietary requests. I hope we will be able to accommodate everyone who wants to attend but if not we will try to book an additional trip - so don’t worry if you have done the trip before please join us again this year. Contact Annette asap to reserve your place on 01622 820719 or Annette.scott4@btinternet.com |
FUN DAY TO PUT IN YOUR DIARY
We are holding a family fundraising event in aid of Mid Kent MNDA at The Bull in East Farleigh on Sunday 23rd August, which would have been Liz Tredget’s 63rd birthday. It will start at 12.30 and there will be a buffet in the function room for ticket holders - £10.00. There will also be Live Music and a Charity Auction. The Bull has a mini farm and a play area, so it will be great for kids too. Let's pray for good weather! https://thebullinneastfarleigh.com/ Any helpers will be given a free ticket. If you would like to book a ticket or want further information please phone Judith on 07808 829754 |
MID KENT CARERS GROUP
The next Carers Group meeting is on Monday July 5th currently on zoom at 11am. However, with Covid 19 restrictions hopefully being totally withdrawn before then, the meeting venue may well return to the Malta Inn Maidstone. I will email carers, whose details I have, nearer the time to discuss the options. If there are any other carers who would like information on our group, please email me at <davesh56@hotmail.com>.
Dave Sheridan
The next Carers Group meeting is on Monday July 5th currently on zoom at 11am. However, with Covid 19 restrictions hopefully being totally withdrawn before then, the meeting venue may well return to the Malta Inn Maidstone. I will email carers, whose details I have, nearer the time to discuss the options. If there are any other carers who would like information on our group, please email me at <davesh56@hotmail.com>.
Dave Sheridan
CAMPAIGNS UPDATE APRIL 2021 |
THE MID KENT CUDDLE SEAT |
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Local elections are coming up for many of us on May 6th and we’ve been asked to contact our local candidates asking them to make a pledge in support of the Act to Adapt campaign. I’ve got a template letter and Tweet which I can forward if anyone would like to do this. There’s also an “action” for after the elections which I’ll send round when the time comes.
Here are a few brief updates. Scrap 6 Months Well this is rumbling on with no prospect of any concrete news at the moment, unfortunately. We were told by the DWP that they were waiting to hear from clinicians so the Policy and Campaigns Team drafted a letter which was then signed by a number of Royal Colleges and sent to Justin Tomlinson, Minister for the Disabled. This has most definitely not been forgotten and I’ll obviously let you know if any other action is needed from us. Act to Adapt See local elections note above. United to End MND I sent round the link to the online petition in support of this and at the time of writing this it has 98,256 signatures, so thanks to everyone who signed and shared it. The Government replied after 10,000 signatures (as they’re required to do) but it was the usual “we’re already investing in research into neurological conditions” line. The Association has responded stating that it is requesting funding for targeted research into MND, as this is currently underfunded. If the petition reaches 100,000 signatures, it will be considered for debate by Parliament but the more signatures we can get the better, so please continue to sign and share it. Elaine Coates |
In 2007, we started to explore the possibility of a cuddle seat. The idea came from Sarah Lavender OT at the Wisdom Hospice, who said that “patients become isolated when their partner, grandchild or even a pet is unable to sit next to them and provide physical contact and affection”.
Karl Grossfield of the Tana Trust was willing to support such a development financially and encourage its introduction to the market. After a long search using students from Canada we found that Wealden Rehab in Chatham had a chair that could, with modifications, be made to help people with MND. Without the generous support (of £15000) and encouragement from the Tana Trust we would have been unable to get beyond the “good idea” stage There were many favourable reviews about the Cuddle Seat, including a piece in Thumb Print and Sarah Lavender used it as part of her presentation at the International MND Symposium in ? One chair spent some months in a Help for Heroes home in Blackpool. Before every one has forgotten, it seemed that now might be the time to see if anyone would like to borrow the chair that is still in Wealden Rehab’s store. Ring me (01634 846330) and I can arrange a visit so that you can try it out. Joyce Onslow |
SOME INTERESTING PODCASTS |
FUND RAISING DIRECT FOR MNDA NATIONAL OFFICE
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Do you who enjoy listening to podcasts? If so, you might like to try these two MND-related podcasts.
MND Matters is a new podcast recently launched by the MND Association. The first episode is available to listen to now and features Kevin Sinfield who supported Rob Burrows’ fund-raising efforts by running seven marathons in 7 days. The Dodcast is hosted by sports commentator Jill Douglas, with Doddie Weir. In each episode they are joined by experts from different aspects of the MND world and covering subjects such as support for people living with MND, the current research projects and hopes for the future. Doddie gives his honest reflections on his experience of living with MND. |
A group of Sittingbourne school friends of Denise Boney’s daughter Sarah took up the 7 in 7 Challenge set by the Association. They and their children, whose ages ranged from 14 down to 2 walked, ran, bounced and cartwheeled – and sometimes did more than a mile a day. They soon reached their target of raising £77 – and then they carried on. They have already reached £1,500 and have been amazed at the generous response of their families and friends.
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ZOOM INTO YOGA FOR MND |
KENT CARERS MEETINGS |
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Cheryl has kindly agreed to host additional yoga and relaxation sessions for us until end of June, when we will review depending on how things develop with end of lockdown
These sessions are still open to anyone (including volunteers) in South London and Kent who wants to attend, focusing on gentle seated relaxation and breathing exercises. All you need is a chair and a zoom connection, and you don’t have to have your camera on if you’d prefer privacy! Future sessions will continue to be held every other Tuesday at 11:00 am on 25th May; 8th June; and 22nd June (to be confirmed). The link for all sessions is https://us02web.zoom.us/j/82842861706?pwd=ZUJSTThGT1BJZ25Lay9uY2xVUE93QT09 Cheryl has also done a short guided relaxation recording for us, which Ahmed has put on YouTube for us https://youtube/oQuaQG6TnDU Please feel free to share with anyone who may be interested |
These meetings are designed for newly diagnosed people and families, although anyone interested is also welcome to attend. The dates are as follows
3rd June, 1st July, 5th August, 2nd September, 7th October, 4th November, 2nd December The link, (below) will remain the same for all subsequent meetings https://us02web.zoom.us/j/86831547488?pwd=Q3c3eWNURzc4blRSbDlJMDRjZVVodz09 |
Helen Whately, MP visits Wisdom Hospice Support Group
n January 22nd members of both Mid Kent Support Groups were joined by Helen Whately, MP when they shared their experiences of living with MND. It was a very emotional session (even reducing Helen to tears) and she certainly left with a good insight into the challenges plwMND face.
Helen is MP for Faversham and Mid Kent and Minister of State for Social Care and she has been given the task of co-ordinating the Government’s response to the paper on investment in MND research so I hope that her experience at the Support Group will inform this. She sent me the following email afterwards:
Thank you for your email and for inviting me to your support group. The screenshot is great – I don’t know how Ahmed got one with most people smiling – quite a feat!
I was pleased to attend the support group as it is important that I understand the challenges of being diagnosed with MND and how it affects people medically, but also how the government can better support people who are living with it. If any of your members live in Faversham and Mid Kent and need any help with the NHS, PIP, social services or anything else please ask them to contact me and I will do my best to help them..
Can you also let the branch members know that I am working to increase investment in research for a cure for MND, and I have raised the issue of people with MND being asked by the DWP for reassessment for their PIP. I will keep you up-to-date with progress.
Please let me know if there is ever anything that I can do for you or the Mid Kent Branch of the MNDA.”
Helen is MP for Faversham and Mid Kent and Minister of State for Social Care and she has been given the task of co-ordinating the Government’s response to the paper on investment in MND research so I hope that her experience at the Support Group will inform this. She sent me the following email afterwards:
Thank you for your email and for inviting me to your support group. The screenshot is great – I don’t know how Ahmed got one with most people smiling – quite a feat!
I was pleased to attend the support group as it is important that I understand the challenges of being diagnosed with MND and how it affects people medically, but also how the government can better support people who are living with it. If any of your members live in Faversham and Mid Kent and need any help with the NHS, PIP, social services or anything else please ask them to contact me and I will do my best to help them..
Can you also let the branch members know that I am working to increase investment in research for a cure for MND, and I have raised the issue of people with MND being asked by the DWP for reassessment for their PIP. I will keep you up-to-date with progress.
Please let me know if there is ever anything that I can do for you or the Mid Kent Branch of the MNDA.”
THANK YOU AND WELL DONE TO ALL THE STAFF AND PUPILS FROM WESTBROOK TRUST
Inspired by Kevin Sinfield’s ‘7 in 7 Challenge’ and England Does The Daily Mile, our aim was to raise £1,400 for Motor Neurone Disease.
Linked to the five areas of wellbeing, our community chose a daily challenge to complete for 14 days between the 30th April and 14th May. This could have been as simple as taking part in the daily mile at school or choosing another challenge linked to the number 14, for example completing 14 press ups each day.
Individuals also chose a challenge that could lead to a positive change in the longer term to help them to be more active each day.
Oliver Allen
To watch our celebratory video, please visit the link to our website
https://www.thewestbrooktrust.org.uk/community-events/14-challenge-for-motor-neurone-disease
Paula Fewtrell, Headteacher, St Margaret’s Infant School, Rainham
Linked to the five areas of wellbeing, our community chose a daily challenge to complete for 14 days between the 30th April and 14th May. This could have been as simple as taking part in the daily mile at school or choosing another challenge linked to the number 14, for example completing 14 press ups each day.
Individuals also chose a challenge that could lead to a positive change in the longer term to help them to be more active each day.
Oliver Allen
To watch our celebratory video, please visit the link to our website
https://www.thewestbrooktrust.org.uk/community-events/14-challenge-for-motor-neurone-disease
Paula Fewtrell, Headteacher, St Margaret’s Infant School, Rainham
And of course, some of the fund raisers were four footed!
JOYCE'S PLANTS ARE READY - ARE YOU?
As I’m sure many of you already know, Joyce is always eager to sell plants for Mid Kent’s coffers. She specialises in perennials which come up year after year, and as well as those pictured above, there are Salvias, which come in several shades of red, pink and purple and flower all summer and into the autumn, poppies ( both Orange and the Welsh lemon one), shade lovers like Alchemilla Mollis and lots more. If you have some gaps to fill, why not ring 01634 846330 and arrange a shopping trip?
As I’m sure many of you already know, Joyce is always eager to sell plants for Mid Kent’s coffers. She specialises in perennials which come up year after year, and as well as those pictured above, there are Salvias, which come in several shades of red, pink and purple and flower all summer and into the autumn, poppies ( both Orange and the Welsh lemon one), shade lovers like Alchemilla Mollis and lots more. If you have some gaps to fill, why not ring 01634 846330 and arrange a shopping trip?
Jon and his dog Sasha have been walking along the river Medway and enjoying the scenery. I hope she wasn’t planning to eat the bluebells.
YOGA FOR MID KENT
On the 10th February, I joined a yoga session on zoom I've have never done this before I'd like to share my experience, it was good to meet people, we learnt how to control are breathing and how to relax, gentle movements with limbs, this was all done sitting position. Cheryl took the Yoga session was understanding to are needs, she said if you can't do what she says, well don't do it. I found after the yoga session I had a feel good factor.
Jon
Our sessions have been taken by Cheryl Fenton who has had family experience of MND and who felt that local people living with MND could benefit from yoga sessions. During Lockdown she has been unable to offer her normal face to face sessions but hopes that when things return to normal, she will be able to visit our real Support Group meetings and offer further help.
Jonathan wasn’t the only debutant! I had never even considered thinking about taking part in a yoga session – I was afraid of getting my foot stuck behind my head! I found the breathing control session useful too – and it was good to actually NOTICE what happens to the rest of your body, when you breathe. As in many of our online sessions, we were joined by four footed friends checking up on our activities – and stealing the limelight too.
Jon
Our sessions have been taken by Cheryl Fenton who has had family experience of MND and who felt that local people living with MND could benefit from yoga sessions. During Lockdown she has been unable to offer her normal face to face sessions but hopes that when things return to normal, she will be able to visit our real Support Group meetings and offer further help.
Jonathan wasn’t the only debutant! I had never even considered thinking about taking part in a yoga session – I was afraid of getting my foot stuck behind my head! I found the breathing control session useful too – and it was good to actually NOTICE what happens to the rest of your body, when you breathe. As in many of our online sessions, we were joined by four footed friends checking up on our activities – and stealing the limelight too.
THE CUDDLE SEAT
These photos show in more detail the special features of the Cuddle Seat and how the double seat works and looks. Please look elsewhere in MKM for its history and information on how to access one.
SAMPLE LETTER TO LOBBY CONSTUENCY MPs
PLEASE SUPPORT YOUR CONSTITUENTS AFFECTED BY MOTOR NEURONE DISEASE
Dear …………………………………………..,
I am contacting you as one of your constituents to ask you to attend the Motor Neurone Disease (MND) Association’s online drop-in event on Friday 18th June between 11am and 12:30pm.
As you may know, MND is a devastating terminal illness which can affect an individual’s ability to walk, talk, eat, drink, and breathe. Up to 1 in every 300 people will develop MND, which means that over 200,000 of the current UK population will die from the condition unless effective treatments are found.
The event will focus on research into MND, with current gene therapy clinical trials offering real hope of an effective treatment for some forms on MND within the next few years. MPs will get to hear from leading researchers as well as people living with and affected by the disease.
I hope you will support me and thousands of others who have been affected by this cruel illness by attending the drop-in event on Friday 18th June.
Please contact Lana Ghafoor on lana.ghafoor@mndassociation.org to receive the joining instructions.
Best wishes,
Please use the above sample letter to lobby your M.P or go to https://ecampaigns.mndassociation.org/page/82087/action/1?ea.tracking.id=cc
where you can invite your MP online
JACQUI'S MISSION 5000
Last year I wanted to do something to raise money for MNDA, so decided I would try and swim a mile, however a few weeks later I was then inspired with MND’s Mission 5000. Whilst I would have loved to have achieved 5000 miles, I knew that would be impossible, so I decided that my challenge would be 5000 metres - a metre for each person living with MND, well that was a mad thought.
From the first swim that I was able to do after Lockdown 1, it was a shock to discover that due to the MND my technique had changed and swimming was not going to be easy. My daughter Victoria however was such a big support that she made my challenge possible even if we did have a few scary moments and it meant as time went on I had to keep changing what I did and only doing a little at a time. With the help of friends and family I worked on my challenge I even managed to squeeze in a few metres during a spa weekend at Hempstead House, Sittingbourne.
A few months later we went into Lockdown 2 with just over 900 meters to go. I hoped that it wouldn’t go on for too long, and that I would be able to return to swimming soon, not only to complete my challenge but also because not being able to walk and losing more and more of my independence and freedom, swimming was something that gave a bit of the old me back. However life was not straight forward and before we knew it we were in Lockdown 3 and I started to wonder if I would ever complete this challenge and wishing that I had kept it at a mile - that would of been so much more sensible, which is something I am not!
Finally the day dawned and I could go back to swimming with my new flotation devices. I was determined to finish this challenge although I was very apprehensive as things with my body had continued to deteriorate. My daughter Victoria and her fiancé Joel and good friends Maggie, Steve and Angela and her husband Peter were determined I would finish and gave me the fair bit of assistance I needed. Finally I completed my Mission 5000 on the 29th April 21, at Wallops Wood (see last MKM). I managed to raise £1185 plus an additional £270 making a grand total of £1455.
Jacqui Jefferson
From the first swim that I was able to do after Lockdown 1, it was a shock to discover that due to the MND my technique had changed and swimming was not going to be easy. My daughter Victoria however was such a big support that she made my challenge possible even if we did have a few scary moments and it meant as time went on I had to keep changing what I did and only doing a little at a time. With the help of friends and family I worked on my challenge I even managed to squeeze in a few metres during a spa weekend at Hempstead House, Sittingbourne.
A few months later we went into Lockdown 2 with just over 900 meters to go. I hoped that it wouldn’t go on for too long, and that I would be able to return to swimming soon, not only to complete my challenge but also because not being able to walk and losing more and more of my independence and freedom, swimming was something that gave a bit of the old me back. However life was not straight forward and before we knew it we were in Lockdown 3 and I started to wonder if I would ever complete this challenge and wishing that I had kept it at a mile - that would of been so much more sensible, which is something I am not!
Finally the day dawned and I could go back to swimming with my new flotation devices. I was determined to finish this challenge although I was very apprehensive as things with my body had continued to deteriorate. My daughter Victoria and her fiancé Joel and good friends Maggie, Steve and Angela and her husband Peter were determined I would finish and gave me the fair bit of assistance I needed. Finally I completed my Mission 5000 on the 29th April 21, at Wallops Wood (see last MKM). I managed to raise £1185 plus an additional £270 making a grand total of £1455.
Jacqui Jefferson
TECHNOLOGY TO HELP YOU
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We recently attended a talk by Richard Cave going through a number of free and very useful apps for people with MND. These are all available on Android smart phones and tablets (eg Samsung, Motorola etc), with alternative versions available on Apple devices.
Live Transcribe: Live Transcribe does exactly what it says on the tin; it types up as you speak. For those with difficulty typing, this would allow you to dictate a long email or document for instance rather than having to type it. Action Blocks: This app allows you to set up any Google Assistant commands as buttons on your phone or tablet. Example commands include calling someone, sending a template text or controlling smart devices around the house eg light. The buttons can be any size you want, including the whole phone screen. This makes it easier to continue to use your phone if it is getting difficult to navigate the small menu items. Voice Access: This app enables voice control of all aspects of your phone or tablet. Everything from browsing the internet, sending a tweet or typing up an email could be easily done using voice commands. Look To Speak: A new free app designed to track eye movements to select one of 16 customisable sentences. The app doesn’t require any special set up, and doesn’t have a problem working in sunlight or recognising eye movement behind specs. This can be particularly helpful for Eye Gaze users in situations where Eye Gaze can’t be brought along. In addition, most smartphones are water resistant so this can be used in the wet room for instance, where other high tech communication devices can’t go. Ahmed Abdeldayem, Area Support Co-ordinator |
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TIME TO SPARE
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Time certainly flies and the time to think up another quiz has zoomed around again. This time, returned sheets have been a bit slow in finding their way back, but I’m pleased to say that like the swallows they are winging their way home. John Townsend was driven to verse again -
“Your quiz this time is all about Time, Time on our hands, hands on the clock, Clocks on the wall and clocks in the hall, Despite all the time, my mind had a block – I couldn’t find time to finish it all.” The answers are:- 1. Time bomb 2. Doing time 3. Railway timetables 4. Times tables 5. Time honoured 6. Good time girl 7. Time signature 8. Time trial 9. Time warp 10. Time slot 11. Time Limit 12. Time and time again 13. Time after time 14. Have a good time 15. At the same time 16. For the time being 17. Time flies 18. Time share 19. Have no time for 20. Time sheet 21. Time Gentlemen Please! 22. Time Team 23. A stitch in time 24. Once upon a time 25. Time stood still 26. In good time 27. What’s the time Mr Wolf? 28. Every so often 29. Hickory Dickory Dock |
30. The 4.50 from Paddington
31. A night at the opera 32. A hard day’s night 33. A month in the country 34. Stands the church clock (still) at ten to three 35. Just a minute 36. Longcase clock 37. Alarm clock 38. Grandmother clock 39. Carriage clock 40. Cuckoo clock 41. Stop watch 42. Wrist watch 43. Missing from the sheet! 44. Pocket watch 45. Half-hunter watch 46. Fob watch 47. Minute 48. Mainspring 49. Key 50. Pendulum 51. Hour hand 52. Second 53. Tick 54. Second hand 55. Strike As I typed the answers, I realised that I had jumped from no. 42 to 44! I also miscounted the number of letters required more than once, so no prizes for me on this occasion. Retirement looms? The next quiz takes us all to the sea-side so get your buckets and spades ready! The sheets are still popular but if you think you might be able to help us to sell more, PLEASE get in touch 01634 404378 or jeanlear@btinternet.com Jean |
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
