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Mid Kent Matters
Spring 2021 - 3rd COVID-19 edition
DATES FOR YOUR DIARY
ALL OF OUR MEETINGS ARE CURRENTLY BEING HELD ONLINE!
Wisdom Hospice Support Group
20th January; 3rd and 17th February; 3rd and 17th March (St. Patricks Day); 7th and 21st April; 5th and 19th May; 2nd and 16th June
Heart of Kent Support Group
22nd January; 12th and 22nd February; 12th and 26th March; 9th and 23rd April; 14th and 28th May; 11th and 25th June
Mid Kent Carers Group
8th March; 10th May
Contact: davesh56@hotmail.com
Kent Carers Group
Meets via zoom at 11am on first Monday of every month
1st Feb; 1st March; 5th April; 3rd May
Contact : Ahmedabdeldayem@mndassociation.org
Mid Kent Annual General Meeting will be at 2pm
on 17th April on zoom
please ring Joan Simpson 01634 686685
WHEN the situation improves, and we are able to revert to REAL meetings, we will be delighted to update you!
Wisdom Hospice Support Group
20th January; 3rd and 17th February; 3rd and 17th March (St. Patricks Day); 7th and 21st April; 5th and 19th May; 2nd and 16th June
Heart of Kent Support Group
22nd January; 12th and 22nd February; 12th and 26th March; 9th and 23rd April; 14th and 28th May; 11th and 25th June
Mid Kent Carers Group
8th March; 10th May
Contact: davesh56@hotmail.com
Kent Carers Group
Meets via zoom at 11am on first Monday of every month
1st Feb; 1st March; 5th April; 3rd May
Contact : Ahmedabdeldayem@mndassociation.org
Mid Kent Annual General Meeting will be at 2pm
on 17th April on zoom
please ring Joan Simpson 01634 686685
WHEN the situation improves, and we are able to revert to REAL meetings, we will be delighted to update you!
FROM THE CHAIR
Well what can you say?
Who would have ever thought we would be where we are now or have had such a torrid year? Although I do hope you have stayed safe and well I do know that some of you have been badly affected by the impact of Covid and my sincere sympathy goes out to you. Whilst I know for many, there is little that anyone can do or say but if there is anything the branch can do that would help please do not hesitate to call any one of us.
For the foreseeable future we will be trying to keep in touch by using technologies – Zoom, social media and that tried and tested telephone and as soon as we are able you can be assured we will be re-establishing our hospice support days, our face to face meetings and our social and fundraising events, but sadly these look a little way off.
In the meantime please take some comfort from the wonderful coverage that MND has had on the media by both celebrities raising awareness and influencing government policy and especially from reports from our scientists who are optimistic about the outcomes of their research projects. Perhaps we will remember 2021 as being the one that discovers a treatment and ultimately a cure - how wonderful would that be!
But for now stay safe and well and stay connected in whichever ways work for you.
Best wishes for a happier year
Annette Scott
Who would have ever thought we would be where we are now or have had such a torrid year? Although I do hope you have stayed safe and well I do know that some of you have been badly affected by the impact of Covid and my sincere sympathy goes out to you. Whilst I know for many, there is little that anyone can do or say but if there is anything the branch can do that would help please do not hesitate to call any one of us.
For the foreseeable future we will be trying to keep in touch by using technologies – Zoom, social media and that tried and tested telephone and as soon as we are able you can be assured we will be re-establishing our hospice support days, our face to face meetings and our social and fundraising events, but sadly these look a little way off.
In the meantime please take some comfort from the wonderful coverage that MND has had on the media by both celebrities raising awareness and influencing government policy and especially from reports from our scientists who are optimistic about the outcomes of their research projects. Perhaps we will remember 2021 as being the one that discovers a treatment and ultimately a cure - how wonderful would that be!
But for now stay safe and well and stay connected in whichever ways work for you.
Best wishes for a happier year
Annette Scott
CARE REPORT
To begin, may I take this opportunity to send you all best wishes for the New Year in the hope of a kinder year for the world and for us all. We have all faced many challenges but together and by supporting one another we have found ways of continuing to keep connected. So, as we move into 2021 our Zoom Meetings, and regular phone or e-mail contact will continue uninterrupted by whatever is going on around us.
It has been a pleasure to meet with many of you over the past months on Zoom. Here we have enjoyed many lively meetings, been challenged by John’s quizzes and informed by interesting speakers. Our Christmas Meeting was particularly enjoyable.
We are aware of the many reasons why some have not, or at first felt reluctant, to join the Zoom Meetings. Clearly it is not the same as our past face to face get-togethers and there may be concerns when not having met other participants or being able to speak well. Be reassured that we do understand these perfectly valid concerns. However, we do believe that they do not outweigh the benefits of being in the company of like-minded people whose lives are affected by MND. There is no expectation for you to speak and you can choose to remain silent and enjoy listening to others. You are always welcome to share your concerns with me or your AV in order to help you decide whether you might feel able to join with us on Zoom.
If it is the technology that is the concern, there is the opportunity to try a trial run by contacting me or Ahmed (our Area Support Co-ordinator) direct. So, whether you have never been to one of our Support Groups before or have been coming for months we look forward to welcoming many of you to our next meetings. We send Contact Details before each meeting and advance dates are on the front cover of MKM.
In spite of the various restrictions which continue both locally and nationally there continues to be a lot going on within the MND Community. Many of you will be aware of Rob Burrows, newly appointed MBE and ex Leeds Rhino’s Rugby League player and his fantastic fund raising for MND research and care that has resulted from the BBC documentary highlighting his journey with MND. The awareness raised nationally will hopefully assist our local attempts to bring MND more into focus with our services providers and the need for better co-ordinated, specialist, multi-disciplinary care for people living with MND.
Regarding the above, I was in December pleased to be invited by Healthwatch Medway to gather insights from people living with MND to gauge how Health and Social Care Services are or perhaps not benefiting them. A report will be prepared from the gathered information and presented to decision makers and relevant local authorities (CCGs, Local Councils and NHS Trusts). I extend my thanks to all who have provided their observations and comments, both positive and negative, which enabled me to have a constructive discussion with the Healthwatch representative and our Service Delivery Manager from the MND Association. I look forward to sharing the resulting report with you soon. I was also able to put Healthwatch in touch with other MND Branches across Kent. May I also take this opportunity to encourage as many of you who feel able, to continue to send in your comments (both positive and negative). They will be used anonymously to support our attempts to influence service providers across Kent.
The MND Association continues the momentum on research and there are some promising results. This would not be possible without the generous support that has been and continues to be given by all our supporters. We are extremely grateful to everyone who has continued to donate, raise funds and give so generously of their time to make it possible to fund research and care both locally and at national level. You can find more information regarding research progress and care projects on the MND Association website or as reported in the Association’s quarterly magazine, Thumbprint. Please do contact us if you are not receiving the Thumbprint.
I have only provided a snapshot here of what has been happening and will leave you to find out more as you read this edition of MKM. Should you have any questions about anything reported here, or indeed any other MND matters, please do get in touch with me on 01634 723677.
Best Wishes, Sheila
It has been a pleasure to meet with many of you over the past months on Zoom. Here we have enjoyed many lively meetings, been challenged by John’s quizzes and informed by interesting speakers. Our Christmas Meeting was particularly enjoyable.
We are aware of the many reasons why some have not, or at first felt reluctant, to join the Zoom Meetings. Clearly it is not the same as our past face to face get-togethers and there may be concerns when not having met other participants or being able to speak well. Be reassured that we do understand these perfectly valid concerns. However, we do believe that they do not outweigh the benefits of being in the company of like-minded people whose lives are affected by MND. There is no expectation for you to speak and you can choose to remain silent and enjoy listening to others. You are always welcome to share your concerns with me or your AV in order to help you decide whether you might feel able to join with us on Zoom.
If it is the technology that is the concern, there is the opportunity to try a trial run by contacting me or Ahmed (our Area Support Co-ordinator) direct. So, whether you have never been to one of our Support Groups before or have been coming for months we look forward to welcoming many of you to our next meetings. We send Contact Details before each meeting and advance dates are on the front cover of MKM.
In spite of the various restrictions which continue both locally and nationally there continues to be a lot going on within the MND Community. Many of you will be aware of Rob Burrows, newly appointed MBE and ex Leeds Rhino’s Rugby League player and his fantastic fund raising for MND research and care that has resulted from the BBC documentary highlighting his journey with MND. The awareness raised nationally will hopefully assist our local attempts to bring MND more into focus with our services providers and the need for better co-ordinated, specialist, multi-disciplinary care for people living with MND.
Regarding the above, I was in December pleased to be invited by Healthwatch Medway to gather insights from people living with MND to gauge how Health and Social Care Services are or perhaps not benefiting them. A report will be prepared from the gathered information and presented to decision makers and relevant local authorities (CCGs, Local Councils and NHS Trusts). I extend my thanks to all who have provided their observations and comments, both positive and negative, which enabled me to have a constructive discussion with the Healthwatch representative and our Service Delivery Manager from the MND Association. I look forward to sharing the resulting report with you soon. I was also able to put Healthwatch in touch with other MND Branches across Kent. May I also take this opportunity to encourage as many of you who feel able, to continue to send in your comments (both positive and negative). They will be used anonymously to support our attempts to influence service providers across Kent.
The MND Association continues the momentum on research and there are some promising results. This would not be possible without the generous support that has been and continues to be given by all our supporters. We are extremely grateful to everyone who has continued to donate, raise funds and give so generously of their time to make it possible to fund research and care both locally and at national level. You can find more information regarding research progress and care projects on the MND Association website or as reported in the Association’s quarterly magazine, Thumbprint. Please do contact us if you are not receiving the Thumbprint.
I have only provided a snapshot here of what has been happening and will leave you to find out more as you read this edition of MKM. Should you have any questions about anything reported here, or indeed any other MND matters, please do get in touch with me on 01634 723677.
Best Wishes, Sheila
TREASURERS REPORT
My last report for MKM was written as we were getting back to some normality after the first lockdown, now we find ourselves in another lockdown and we are all once again having to adjust and come up with inventive ways of fundraising so that we can continue to provide support to people affected by MND. Many thanks to everyone who has donated via our “Special Appeal” justgiving page and whilst we have surpassed the “target” we originally set for our special appeal, we believe that this online option for making donations and leaving messages of support, together with raising awareness, has been a really great source of fundraising for Mid Kent during this difficult year. We plan therefore to keep the MNDA Mid Kent justgiving page available for donations and hope that you find this a helpful way to support people affected by MND. We can only express our huge gratitude and commit to using every penny donated, to support others diagnosed with MND so no one feels alone. Your donations will help us to continue to provide support to people with MND.
Our general donations and Gift Aid totalled £862 in the last three months and although there have been fewer fundraising events, our supporters have raised a fantastic £2277! We have gratefully received just over £4600 from corporate and “In memoriam” donations, and with Branch fundraising of £283 our total income for the period was £8042.
Our Thanks go to :-
Maidstone Borough Council (winter grant), Little Market Leybourne, Mr & Mrs Nichols, the General Gordon Masonic Lodge, WH Smith Post Office Maidstone, Neil Ord, Lynne’s Mission 5000, Joyce for plant sales, Dave & Family for Brenda Sheridan Walk to D’feet, Jacqui Jefferson for mask sales, Jean for quiz sheets, Sue for 100 club, Elaine for the online Zoom quizzes, our Easyfundraising “spenders” and of course to everyone for your support and general donations for our special appeal.
Over the same period, we have spent £13974 to support people affected by MND; £5247 of which has been on care, and £6582 on equipment. Our care costs have included quality of life and carer’s grants together with therapies for people with MND and their carers. We have recently assisted with heating and fuel costs and helped with hot meals and food vouchers, paid for from the grant from Maidstone Borough Council. We have contributed towards home adaptations, stairlifts, purchased some new ramp kits and small equipment items, paid for the provision of lifelines and covered the maintenance and repair costs, delivery and collection of equipment.
Lynne
My last report for MKM was written as we were getting back to some normality after the first lockdown, now we find ourselves in another lockdown and we are all once again having to adjust and come up with inventive ways of fundraising so that we can continue to provide support to people affected by MND. Many thanks to everyone who has donated via our “Special Appeal” justgiving page and whilst we have surpassed the “target” we originally set for our special appeal, we believe that this online option for making donations and leaving messages of support, together with raising awareness, has been a really great source of fundraising for Mid Kent during this difficult year. We plan therefore to keep the MNDA Mid Kent justgiving page available for donations and hope that you find this a helpful way to support people affected by MND. We can only express our huge gratitude and commit to using every penny donated, to support others diagnosed with MND so no one feels alone. Your donations will help us to continue to provide support to people with MND.
Our general donations and Gift Aid totalled £862 in the last three months and although there have been fewer fundraising events, our supporters have raised a fantastic £2277! We have gratefully received just over £4600 from corporate and “In memoriam” donations, and with Branch fundraising of £283 our total income for the period was £8042.
Our Thanks go to :-
Maidstone Borough Council (winter grant), Little Market Leybourne, Mr & Mrs Nichols, the General Gordon Masonic Lodge, WH Smith Post Office Maidstone, Neil Ord, Lynne’s Mission 5000, Joyce for plant sales, Dave & Family for Brenda Sheridan Walk to D’feet, Jacqui Jefferson for mask sales, Jean for quiz sheets, Sue for 100 club, Elaine for the online Zoom quizzes, our Easyfundraising “spenders” and of course to everyone for your support and general donations for our special appeal.
Over the same period, we have spent £13974 to support people affected by MND; £5247 of which has been on care, and £6582 on equipment. Our care costs have included quality of life and carer’s grants together with therapies for people with MND and their carers. We have recently assisted with heating and fuel costs and helped with hot meals and food vouchers, paid for from the grant from Maidstone Borough Council. We have contributed towards home adaptations, stairlifts, purchased some new ramp kits and small equipment items, paid for the provision of lifelines and covered the maintenance and repair costs, delivery and collection of equipment.
Lynne
MID KENT AGM JOINING DETAILS
Please zoom in to our AGM on 17th April at 2pm. Please contact Joan Simpson on joansimpson@ic24.net or 01634 686685.
Please zoom in to our AGM on 17th April at 2pm. Please contact Joan Simpson on joansimpson@ic24.net or 01634 686685.
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SUMMER BOAT TRIPS
We hope to arrange some trips in the summer and will let you know dates as soon as we can. Annette |
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WE CAN HELP WITH VOICE BANKING
As a volunteer with Mid Kent I offer support with Voice Banking. When I began in December 2017, the process required 1600 phrases to be recorded, thankfully this has now been significantly reduced to just 50. Voice banking is a process which enables a person to record and store a set list of phrases with their own voice. This recording is then converted to make a personal synthetic voice for future use on a computer, tablet or communication aid. The voice won’t be an exact replica of the persons natural speech but it will bear a strong resemblance. The recording process is quite straightforward and can be completed in a few short sessions. The only equipment required is a computer or laptop and a headset. The branch can loan these if needed and will cover the cost of the voice banking. It is important to stress that the earlier a person banks their voice the better, as the process is much easier and will have the best chance of being successful. The first step is to register which takes only a few minutes to do. If you would like more information or my support to bank your voice, please ring Annette, 01622 820719 or email annette.scott4@btinternet.com who will put us in touch. Lin Barnes |
MY EXPERIENCE OF VOICE BANKING
I did my voice banking session just before Christmas 2019, the branch lent me a very nice modern laptop computer and it had ModelTalker loaded up on it. I couldn’t log in to the software as I did not have an account set up. I got touch with Richard Cave, who contacted me and set me up with an account and password. He said that ‘Acapela’ was the new software to use and it only required 350 phrases to be recorded. The software account was quite expensive and I was very grateful with the MND association for funding my voice bank session. The software was quite easy to use, it displays the phrase and then you press record then read out the phrase. The first time you use this software it asks you to replay the phases. When you are happy with the sound of your voice you then read the next phrase. The phrases are short and are of American theme, some of them don’t make much sense, and they are just written in such a way to record all aspect of your voice. I did about 50 phrases per day and completed it in just over a week. Once you have finished all the phrases the account appears to be complete, and in fortnight you get an Email from Acapela telling you how to log in and sample the voice bank. They give you a 3 month free trial. All you do is type a phrase using a smart phone and it responds with your voice. I found Acapela very good software and easy to use. My voice has deteriorated over the last 6 months and I may need to download my voice bank to my note pad device soon. Neil Ord |
MID KENT CARERS GROUP
Our meetings are held on the second Monday of alternate months at 11am. I email all the zoom link information a few days prior to the meetings to carers or ex carers who may want to join in and have given me their details. There is no set agenda which leaves the discussion base open to the participants. Any carers or ex carers who may be interested in joining our group please send me your email and phone details and I'll include you in the link. davesh56@hotmail.com.
Our meetings are held on the second Monday of alternate months at 11am. I email all the zoom link information a few days prior to the meetings to carers or ex carers who may want to join in and have given me their details. There is no set agenda which leaves the discussion base open to the participants. Any carers or ex carers who may be interested in joining our group please send me your email and phone details and I'll include you in the link. davesh56@hotmail.com.
SUPPORT GROUP CHRISTMAS MEETINGS
Smiling faces, zany hats and jolly Christmas jumpers appeared at both events
At the Heart of Kent Group, Jan and Bob Weston won the prize for the best Nursery Rhyme themed hat with their “brown paper” (but no vinegar) creation for Jack and Jill. The winner at the Wisdom Hospice group was Peter Swain for his antlers and zany Christmas jumper.
Like AVs, Ahmed was able to get two outings – but no prizes - out of his hat, which was trimmed with holly and ivy.
Other prize winners
Jacqui Jefferson beat us all in another of John’s teasers and the lucky number winners were 1st prize - Stan Gibbons; 2nd prize - Stuart Braund; and 3rd prize - Peter Lowery
The Support Groups continue to be lively and interesting. We have had sessions on Yoga and Pilates, Direct Payments, Voice Banking and the Euphonia Project and most recently Dr David Oliver gave us an overview of the ALS International Conference. Further information on all these sessions is included elsewhere in MKM.
Other prize winners
Jacqui Jefferson beat us all in another of John’s teasers and the lucky number winners were 1st prize - Stan Gibbons; 2nd prize - Stuart Braund; and 3rd prize - Peter Lowery
The Support Groups continue to be lively and interesting. We have had sessions on Yoga and Pilates, Direct Payments, Voice Banking and the Euphonia Project and most recently Dr David Oliver gave us an overview of the ALS International Conference. Further information on all these sessions is included elsewhere in MKM.
HOLIDAY IDEAS
Now that I have retired from work I need to occupy my time, and certainly spending time doing house work and sorting things out still don’t remain on the top my list......... However having a good time, making memories and having opportunities to do fun things is definitely at the top of my list. That said lockdown and the increase in my level of need, makes going away so much harder, e.g camping, staying in historic buildings or just going somewhere on the spur of the moment, like I used to. I find I have to do a bit more planning, and take more equipment with me than I did for my daughter when she was a baby.
Many hotel rooms and holiday lets really do not have adequate accommodation for wheelchair users and if they do, they are very far and few between and compromises need to be made, which are not always ideal. Fortunately I recently visited a couple of places that I really liked and enjoyed and thought that some of you may want to consider.
Greenbanks Hotel and Self-catering accommodation can be found near Swaffham in Norfolk. The hotel’s rooms are a good size with great wet rooms and there are also self-catering apartments in the building called The Barn. Downstairs are two wheelchair accessible apartments and upstairs two other apartments. The downstairs apartments have a good kitchen/lounge diner with everything you need for a break, a very good size bedroom with twin electric beds and a really good size bathroom with both a wheel-in shower or a bath you can get a hoist under. Greenbanks also has a variety of equipment you can use in addition to the electric beds that you can get a hoist under, and include different types of shower chairs and a hoist. On site there is a lovely pool which has a hoist and there are slings you can borrow and there is even a changing bed. The owners are lovely and make you feel welcome. On site whether you use the hotel or apartment you can avail yourself of the restaurant. Wheelchairs go easily under the table. Access to all buildings was easy and not a problem if you are a wheelchair user. If you want to book the self-catering accommodation you will need to ring directly, here is their link https://www.greenbankshotel.co.uk/
Wallops Wood Self Catering Accommodation is near Petersfield in Hampshire. The setting of the cottages is really beautiful, peaceful and quiet. I recently went there with friends and family, as my daughter had booked a surprise break for my husband and I. There are about 8 self-contained cottages on site with some being really good for wheelchair users but all are disabled friendly. Many of the cottages can be configured to cope with larger groups, although with the rule of 6 and lockdown this is something we cannot do currently. I stayed in Teal, which was a lovely 3 bedroom cottage. Each bedroom had its own bathroom and one had a great roll-in wet room. It was easy to move around and to go in and out of the cottage using the front door and through the patio windows into the garden to admire the fabulous views of the country side or use your own hot tub. The cottage had good facilities although they had taken items out due to COVID, but when we asked for extra, it was not a problem. On site there was a lovely indoor pool and another hot tub, with a hoist and sling to get in to both. It was even better as we could book our own time slot for our exclusive use of the pool, which was fabulous. Unfortunately the cottage hot tub, did not have a hoist so I could not use it, but my family enjoyed it enormously. Wallops wood does have some equipment you can borrow free, which you will need to book ahead, although if you want a profile bed and a hoist for the cottage you will need to hire this separately, which can be done with a local company for you to arrange with. A lovely welcome pack was there on arrival which consisted of bread, cake, wine, beer, butter and milk, as well as a very warm welcome. We liked it so much we are planning to go back. The link to Wallops Wood is https://www.wallopswoodcottages.co.uk
Jacqui Jefferson
Many hotel rooms and holiday lets really do not have adequate accommodation for wheelchair users and if they do, they are very far and few between and compromises need to be made, which are not always ideal. Fortunately I recently visited a couple of places that I really liked and enjoyed and thought that some of you may want to consider.
Greenbanks Hotel and Self-catering accommodation can be found near Swaffham in Norfolk. The hotel’s rooms are a good size with great wet rooms and there are also self-catering apartments in the building called The Barn. Downstairs are two wheelchair accessible apartments and upstairs two other apartments. The downstairs apartments have a good kitchen/lounge diner with everything you need for a break, a very good size bedroom with twin electric beds and a really good size bathroom with both a wheel-in shower or a bath you can get a hoist under. Greenbanks also has a variety of equipment you can use in addition to the electric beds that you can get a hoist under, and include different types of shower chairs and a hoist. On site there is a lovely pool which has a hoist and there are slings you can borrow and there is even a changing bed. The owners are lovely and make you feel welcome. On site whether you use the hotel or apartment you can avail yourself of the restaurant. Wheelchairs go easily under the table. Access to all buildings was easy and not a problem if you are a wheelchair user. If you want to book the self-catering accommodation you will need to ring directly, here is their link https://www.greenbankshotel.co.uk/
Wallops Wood Self Catering Accommodation is near Petersfield in Hampshire. The setting of the cottages is really beautiful, peaceful and quiet. I recently went there with friends and family, as my daughter had booked a surprise break for my husband and I. There are about 8 self-contained cottages on site with some being really good for wheelchair users but all are disabled friendly. Many of the cottages can be configured to cope with larger groups, although with the rule of 6 and lockdown this is something we cannot do currently. I stayed in Teal, which was a lovely 3 bedroom cottage. Each bedroom had its own bathroom and one had a great roll-in wet room. It was easy to move around and to go in and out of the cottage using the front door and through the patio windows into the garden to admire the fabulous views of the country side or use your own hot tub. The cottage had good facilities although they had taken items out due to COVID, but when we asked for extra, it was not a problem. On site there was a lovely indoor pool and another hot tub, with a hoist and sling to get in to both. It was even better as we could book our own time slot for our exclusive use of the pool, which was fabulous. Unfortunately the cottage hot tub, did not have a hoist so I could not use it, but my family enjoyed it enormously. Wallops wood does have some equipment you can borrow free, which you will need to book ahead, although if you want a profile bed and a hoist for the cottage you will need to hire this separately, which can be done with a local company for you to arrange with. A lovely welcome pack was there on arrival which consisted of bread, cake, wine, beer, butter and milk, as well as a very warm welcome. We liked it so much we are planning to go back. The link to Wallops Wood is https://www.wallopswoodcottages.co.uk
Jacqui Jefferson
ENJOYING THE VIEW
CHRISTMAS QUIZZERS
Elaine’s pre-Christmas quiz – at least one further “team” intended to attend, but completely forgot the date - on that evidence it’s unlikely that I would have been any good had I remembered!
SUPPORT GROUP MEETINGS REPORTS
Richard Cave (who works for Kings College Hospital and is associated with MND attended both our Virtual Support Group meetings last Autumn,) is also working on another project. Project Euphonia is a Google Research initiative focused on helping people with affected speech be better understood. Currently speech software like Alexa and Google Assistant is built to respond to the general majority of voices, but it doesn’t work for those in the minority - such as people with speech difficulties. To fix this, Project Euphonia is collecting more voice samples from people with impaired speech. Research scientists will use this data to study ways to refine their speech recognition algorithms to better understand different types of speech. The project is asking for voice contributions from adults who have difficulty being understood by others (but not because of an accent). You can assist in the research from home, by recording a set of phrases. The phrases are in groups of 20 and do not need to be done all in one session. If you would like to be involved with Project Euphonia, or would like more information please visit g.co/Euphonia where you can register. Would you believe? The Euphonia talking machine was invented by Joseph Faber in 1845. It was exhibited in London’s Egyptian Hall a year later. A Euphonia is also a small songbird! |
Direct Payments
Peter Paley from Medway Council Advice and Social Care attended our Wisdom Hospice Support Group to tell us about the support offered by his department. He explained that choosing to use Direct Payments is a sure way of getting the care you want and remaining in control of that care provision. Everyone who has Social Care requirements can use the Direct payments system and Medway Council do their best to make it painless. An award of Direct Payment is made in exactly the same way as a normal Social Care Grant. The use of Direct Payments for care allows you to tailor your care to your specific needs and to use the providers of your choice, and you will be guided in these matters by your local Social Care department. They will handle Inland Revenue Matters and you will be given a Debit card to which your care allowance will be added. It can be a complicated process but you will not be expected to take it all in in one visit and your situation will be reviewed during your first year with a your key worker. If you do not want to manage the DP yourself, you may nominate a relative or friend to act for you. This gives you greater flexibility, and you can pay expenses, such as mileage, of a Volunteer who might be a friend. JJ and her husband PJ chose DPs and were keen to emphasise the support they had received from PP. It is also possible to manage a Carers Grant as a Direct Payment. Jacqui uses hers to pay a Personal Assistant and there is a list of registered PAs on Medway Council’s webpage. |
31st International symposium on ALS/MND
Held On-line: 1800 Participants
Awards
Humanitarian – Carol Birk, CEO of MND Association in Australia
Forbes-Norris – Prof Ammar Al-Chalabi (King’s)
Covid
Although COVID initially stopped all research this is now restating
Use of telemedicine / monitoring online / reducing attendance at hospitals for tests / looking at new tests e.g., using accelerometer (even on mobile phones) to show activity and people speaking on a weblink to look at changes in voice
This may help people join in research more easily as it involves less attendance at hospital
Also, acceptance of home working – for people with MND and their families
Trials reported
REFALS levosimendan – no effect seen
NurOwn - no clear effects
AMX0035 – seems to be safe and early signs that it may slow decline Further trials needed
New ideas on research - completely open research with no patent restrictions would mean drugs will be much cheaper and not restricted by drug companies. It is hoped that such New Thinking will become used more in the future.
ALS Registries
In Ireland they have very good records over many years of nearly all MND patients. This
facilitates research across many areas, such as different types of MND, links to other diseases, and cognitive change. Now looking to develop a European-wide Registry
New treatments for genetic forms of MND
Still only 5-10% of all MND Known as antisense oligonucleotides (ASO)
Torfersen for SOD1 genes
Looking at treatment for c9orf72 gene
Some ideas form the posters
Physical evidence - strenuous exercise and leisure time physical activity seems to be linked to increased risk of MND – but only one risk factor of many. Seems there may be 5 things needed to cause MND, genes may be one (or even more) and other factors are not known.
Use of cannabis being investigated
Importance of Team Approach to Care – particularly a team that has time to build up rapport / look at personal values over time
New online support website for non-invasive ventilation
Coping And Living well with MND (CALM) - interventions, e.g. relaxation, tips for coping – being developed for people with MND and caregivers
2022 Symposium: Berne, Switzerland – but it may be online .
David Oliver
Awards
Humanitarian – Carol Birk, CEO of MND Association in Australia
Forbes-Norris – Prof Ammar Al-Chalabi (King’s)
Covid
Although COVID initially stopped all research this is now restating
Use of telemedicine / monitoring online / reducing attendance at hospitals for tests / looking at new tests e.g., using accelerometer (even on mobile phones) to show activity and people speaking on a weblink to look at changes in voice
This may help people join in research more easily as it involves less attendance at hospital
Also, acceptance of home working – for people with MND and their families
Trials reported
REFALS levosimendan – no effect seen
NurOwn - no clear effects
AMX0035 – seems to be safe and early signs that it may slow decline Further trials needed
New ideas on research - completely open research with no patent restrictions would mean drugs will be much cheaper and not restricted by drug companies. It is hoped that such New Thinking will become used more in the future.
ALS Registries
In Ireland they have very good records over many years of nearly all MND patients. This
facilitates research across many areas, such as different types of MND, links to other diseases, and cognitive change. Now looking to develop a European-wide Registry
New treatments for genetic forms of MND
Still only 5-10% of all MND Known as antisense oligonucleotides (ASO)
Torfersen for SOD1 genes
Looking at treatment for c9orf72 gene
Some ideas form the posters
Physical evidence - strenuous exercise and leisure time physical activity seems to be linked to increased risk of MND – but only one risk factor of many. Seems there may be 5 things needed to cause MND, genes may be one (or even more) and other factors are not known.
Use of cannabis being investigated
Importance of Team Approach to Care – particularly a team that has time to build up rapport / look at personal values over time
New online support website for non-invasive ventilation
Coping And Living well with MND (CALM) - interventions, e.g. relaxation, tips for coping – being developed for people with MND and caregivers
2022 Symposium: Berne, Switzerland – but it may be online .
David Oliver
PLANTS FOR SALE
Yes, really! The Hellebores are blooming in red white and various shades of pink and the Sarcococca (above left) whose tiny ivory flowers smell wonderful when it is brought indoors, gives a much needed lift at this time of the year. Please give Joyce a call, 01634 846330 if you would like to discuss collection details.
Yes, really! The Hellebores are blooming in red white and various shades of pink and the Sarcococca (above left) whose tiny ivory flowers smell wonderful when it is brought indoors, gives a much needed lift at this time of the year. Please give Joyce a call, 01634 846330 if you would like to discuss collection details.
CAMPAIGNS UPDATE JANUARY 2021
The two main national campaigns for this year will be:
'Act to Adapt' and 'United2EndMND'
The first one will obviously have a local element and I’m going to have another attempt at engaging with my local councillors. I’ll let you know what the next phase of this campaign will involve and how you may be able to help.
The second campaign has long been pushed for by people who are living with MND and now, the My Name’5 Doddie Foundation and MND Scotland are also involved. They had a meeting just before Christmas with Matt Hancock which those who attended described as “positive”, so we’ll see.
For those of you who aren’t aware, Lee Millard has a blog called onein300.com about living with MND and which also has lots of interesting information and opinions about research. It’s going to be another busy year!
Elaine Coates
'Act to Adapt' and 'United2EndMND'
The first one will obviously have a local element and I’m going to have another attempt at engaging with my local councillors. I’ll let you know what the next phase of this campaign will involve and how you may be able to help.
The second campaign has long been pushed for by people who are living with MND and now, the My Name’5 Doddie Foundation and MND Scotland are also involved. They had a meeting just before Christmas with Matt Hancock which those who attended described as “positive”, so we’ll see.
For those of you who aren’t aware, Lee Millard has a blog called onein300.com about living with MND and which also has lots of interesting information and opinions about research. It’s going to be another busy year!
Elaine Coates
CORONA VIRUS – THE QUIZ
|
The arrival of completed sheets has brightened my day more than ever in the ups and downs of this year. Thank you for taking part, your encouraging comments and the extra donations sent in by so many of you. Together in the last financial year we made £1, 158. I hope you have forgiven a quiz sheet devoted to C19, and trust that there will never be another such timely opportunity. it was obviously in all your minds as there were several all correct sheets! The answers are
1. Coronavirus 2. Bubble 3. Personal Protective Equipment 4. Mask 5. Toilet rolls 6. Nightingale Hospital 7. Eight o’clock clap 8. Daily exercise 9. Social distancing 10. Zoom 11. Lockdown 12. Covid 19 13. Furlough 14. Working from home 15. Click and collect 16. Rainbow 17. Pandemic 18. Hazmat suit 19. Virtual meetings 20. Home schooling 21. Barnard Castle 22. Vegetable box 23. Visor 24. Keyworkers 25. Pharmacist 26. I.T. staff |
27. Plumber
28. Family 29. Midwives 30. Bin Men 31. Nine, nine, nine 32. Neighbours 33. Teachers 34. Social workers 35. Post men and women 36. Carers 37. Supermarket staff 38. Nurses 39. Delivery drivers 40. Police 41. Doctors 42. Cleaners 43. Public transport 44. Broadcasters 45. Sir Tom Moore 46. Scarlet fever 47. Bubonic plague 48. Cholera 49. Malaria 50. Smallpox 51. Spanish flu 52. Whooping cough 53. Black death 54. Bird flu 55. Diphtheria My apologies, I thought I knew how to spell DipHtheria, but only one person noticed that I had omitted the first h! The next quiz sheet, Time to Spare could also have been called Time to Fill. Jean |
100 CLUB DRAW WINNERS
January
1st prize 52 Lesley Sargeant
2nd prize 57 Sue Copping
February
1st prize 19 Eve Ovenden
2nd prize 13 Sheila Jeffery
1st prize 52 Lesley Sargeant
2nd prize 57 Sue Copping
February
1st prize 19 Eve Ovenden
2nd prize 13 Sheila Jeffery
SOME OF THE MANY WAYS YOU CAN SUPPORT MID KENT MNDA BRANCH
AND
SOME INFORMATION YOU MAY NEED
Donations may be made directly to our fundraising page where you can leave a message if you wish: https://www.justgiving.com/fundraising/mid-kent-branch-emergency-appeal
Please make any cheques payable to “ MNDA Mid Kent “
Send to: MNDA Mid-Kent, 4 Grassmere, Leybourne, West Malling, Kent ME19 5QP
If you wish to make a direct payment to our account
or set up a standing order:-
Account Name : MNDA Mid Kent
Sort Code 30.96.09
Account Number : 02968567
Justgiving/Muchloved/Virginmoney Fundraising pages -If you wish to support the branch via one of these fundraising pages, please make it clear on the page that you wish the donations to come to the Mid Kent Branch.
Gift Aid - If you wish to gift aid your donation please send the Gift Aid declaration form with your donation. If you are making a donation by standing order or direct to our account and wish to Gift Aid then please let our treasurer know and she can make the arrangements. The Gift Aid Declaration Form can be downloaded at:- https://www.mndassociation.org/app/uploads/2013/08/mnda-gift-aid-form.pdf
Please make any cheques payable to “ MNDA Mid Kent “
Send to: MNDA Mid-Kent, 4 Grassmere, Leybourne, West Malling, Kent ME19 5QP
If you wish to make a direct payment to our account
or set up a standing order:-
Account Name : MNDA Mid Kent
Sort Code 30.96.09
Account Number : 02968567
Justgiving/Muchloved/Virginmoney Fundraising pages -If you wish to support the branch via one of these fundraising pages, please make it clear on the page that you wish the donations to come to the Mid Kent Branch.
Gift Aid - If you wish to gift aid your donation please send the Gift Aid declaration form with your donation. If you are making a donation by standing order or direct to our account and wish to Gift Aid then please let our treasurer know and she can make the arrangements. The Gift Aid Declaration Form can be downloaded at:- https://www.mndassociation.org/app/uploads/2013/08/mnda-gift-aid-form.pdf
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
