Oxfordshire Branch News

Joanne Warren

Joanne Warren completed a 10k hard run in Brackley on the 12th June. This is all in preparation for the Great North Run on the 19th September in memory of her dad, John Walliker who lived in Waddesdon. After only a year of having MND, he died in November last year. If anyone would like to sponsor her the just giving page is www.justgiving.com/forpops

New stem cell research to unlock the secrets of MND

This summer the Association will begin funding its first stem cell research programme. The programme will involve induced pluripotential stem (iPS) cells, which are created by reprogramming adult skin cells so that they behave in a similar way to embryonic stem cells. The iPS cells can then be used to generate living human motor neurones for laboratory study and, eventually, for efficient drug screening.

You can read all about the programme in the news in research article on the MNDA website.

Perfect Day From Start To Finish

The branch held its AGM at the Holiday Inn Oxford on April 10th. The day was well attended and David Cairns reviewed some of the branch activities over the year.

AGM_2 AGM_3 The outstanding amount of over £30,000 has been raised over the last 12 months for people living with MND in Oxfordshire. This included three large donations from individuals, a donation of £6000 from the Anglia Co-operative Society, and £5000 from AWE Aldermaston. There were also over 50 donations from individuals and small groups in the area. Fundraising activities in the area raised about £8000. This was a wonderful effort by all concerned.

We said goodbye to two committee members,John Kay and Stella Waterer who have served the Branch well for many years.

AGM_5 After lunch a cheque for £2,100 was presented to the Branch by the Chairman of the local lodge of the Ancient Order of Buffaloes. This money was collected by members of the lodge over the last year and is a very valuable addition to the Branch funds.

AGM_2 The afternoon speaker was Professor Colin Blakemore who captivated the room with his delivery on the development of the brain and particularly its ability to reorganise itself and compensate in particular areas.

Click here to view a lecture from The Royal Society website , by Professor Blakemore titled 'Plasticity of the brain: the key to human development, cognition and evolution'

AGM_1 Finally the afternoon closed with the presentation to Stella Waterer of long service medal by the MND Association for all her work in the area.

Moira recommends RCV

Ryder-Cheshire volunteers have provided me with a weekly visit from a volunteer for several years since I became disabled. It is an excellent scheme and my current volunteer visits for 2hr a week and we are currently sorting out all my old photographs into albums. Previously, I had a volunteer and we became great friends and went on holiday to Cyprus together in 2007.

RCV started approx 23 years ago and they are named after Leonard Cheshire and his wife Sue Ryder. Leonard Cheshire lost both legs in WW2 and found that there was nothing for physically disabled adults to do in their homes. He founded Cheshire Homes where disabled adults can live; go for respite care or holidays. Sue Ryder founded the Sue Ryder Homes which are run along similar lines and also Sue Ryder Charity Shops.

RCV was started to accommodate these people at home by providing someone, other than their carer and family, who can visit them at home to carry out leisure and learning activities. These visits are aimed at relieving boredom, befriending and providing company as most of its members are confined to their homes due to their disability. Also they offer meetups for lunch or afternoon tea.

There are 9 areas of the country covered at the moment, with 2 more branches due to open soon. These range from Aylesbury, VWH, South Oxon, East Oxon, Cherwell, East Midlands, Reading and Warwick.

The website is www.rcv.org.uk
Carole, Co-ordinator of White Horse Branch
email:carol.johnson@rcv.org.uk

Chinese whispers game representing a motor neuron played at the Oxfordshire Science Festival launch day

Many interesting stalls and a huge stage appeared in Broad Street Oxford to launch the Festival with events related to ‘Science in your World’.

There were not quite enough people to break the world record of 1330 people, but the attempt was fun and was successful in raising awareness of motor neuron disease and the Association.

Our stall entitled ‘Enabling Communication’, decked out with colourful balloons, attracted many people to try out various aids to help people who have difficulties in speaking.

OSF_2 The latest eye controlled technology was extremely popular with both children and adults. Using only a small eye movement to activate the screen they sat unusually still demonstrating how little physical movement was needed. Other aids tried out by the public were lightwriters, palmtops and a letterboard all invaluable aids currently being used by people affected by loss of speech. Adaptations to computers were also shown making communication easier for people with MND and other disabilities.

OSF_1 Our volunteers were able to talk to many people about MND and its effects and pages of signatures were collected for the petition to be presented to Government calling for a National Strategy to set standards for care of people with MND.

I Never Thought of That!

The Holiday Inn saw another Family & Friends Group event take place on Friday February 26th. It was part of the Oxfordshire MND branch calendar of activities. The event was geared around the theme of gardening as suggested by a member of the local branch.

The main business of the afternoon was in two separate parts led by Susan and David Batt-Rawden and Susan Williams-Bradley.

David presented illustrations of a wide range of wonderful gardens to visit and shared with everyone the experiences of family outings and disabled facilities. The beautiful and varied venues were diverse and full of adventure. The research around accessibility at each place was inspirational.

Fun was a theme in Susan Williams-Bradley illustrated talk. Susan explained ideas how to make gardening possible for all. Susan talked about planning being pivotal to managing the garden and ensuring it continues to be a pleasure and fun, not a burden for anyone.

Marvellous practical ideas were put across for gardening at different heights and with different plants. Susan offered her services to those who might welcome a little personal input.

New Year Celebration

Saturday January 23rd saw a well attended branch meeting take place at the Holiday Inn Oxford. Not only was this the first get together of 2010 but an opportunity to hear about the Berlin International Symposium on MND which had taken place in December.

Dr Kevin Talbot spoke with enthusiasm about the symposium and the huge opportunities it presented for scientists, doctors and researchers to explore and discuss latest research findings together. From the symposium Jenny Rolfe, occupational therapist, explained how she is now planning to map out individual needs and types of wheelchair a person may require at different stages of their journey.

The local branch has been delighted to be able to raise funds for the provision of three cough assisters. The cough assister was demonstrated by Liz Bellido and Jenny Rolfe. Liz explained how the cough assister worked and how it can be of huge value to people with MND in specific circumstances. Dr Kevin Talbot reinforced the value of these machines. Thank you to everyone who has helped with fund raising.

During the afternoon cheques were presented by Chris Boyer to David Cairns for the local association on behalf of her husband’s memorial.

Pieteke Marsden delighted us all with a musical interlude singing and playing her guitar adding yet another dimension to the occasion.We hope you will come again! Everyone enjoyed a chat and homemade refreshments following the music which is always a special opportunity for catching up with friends.

What a fantastic and special start to 2010!

Donation

AWE Aldermaston made a very generous donation of £5000 to the Oxfordshire Branch of the MND Association.

Kilimanjaro Climb

Gareth Ogden completed a climb of Mount Kilimanjaro raising more than £1,520.

Gareth’s uncle was a founder member of the Association 30 years ago and in this anniversary year, he decided to climb Mount Kilimanjaro, the highest mountain in Africa. On his ‘just giving’ page he says, “The MND Association is a charity that means a lot to me and my family. My uncle died from MND at about the age I am now (35) so I want to raise awareness and hopefully a few donations."

It was a very tough climb over five days over rough terrain but mainly because the effects of the altitude take their toll on progress. Only 6 of the group of 12 reached the summit and Gareth was one of these. On his blog he writes: “with one final push we were there.. again the last few steps are emotional. 8.30am - Uhuru peak, the summit of Kilimanjaro and highest point in Africa. The pressure of taking this on and asking people to support you is relieved. It’s now all justified. There are a lot of things and a lot of people you think about. Then there is the most spectacular view everywhere- amazing glaciers also the barren crater itself. I won't even begin to try to describe it, it is very 'other worldly' ".

Gareth is very grateful to everyone who sponsored him so generously and the experience brought home to him just how tough life with MND must be.

Christmas Appeal

Last year's appeal raised £280 for the Branch. Thanks to everyone who contributed.

Rose Prince meets Friends & Family group

Rose Prince, food writer and judge on Radio 4’s Food and Farming Awards, talked to the Family and Friend’s group meeting on 2nd October. She challenges many food fetishes and recommends a balanced, common sense approach to cooking well-sourced food with a view to making meals stretch further as often as possible. Soups which are easy to eat and nutritious are a particular favourite of hers. She stressed the importance of variety and making food look tempting.

MoiraJeannette She has given us many easy to eat recipes which we are hoping to make into a booklet including a wine jelly which preserves the alcohol! Butter has anti-viral properties the well-attended meeting was also glad to hear.

Visitors The subject certainly proved popular as many people were keen to receive the recipes and chat to Rose and others afterwards.

Walk at Cornbury Park

Saturday September 12th was a glorious day for our annual Sponsored Walk, this time on the Cornbury Estate at Charlbury.

About 60 people, including a couple of toddlers, took part, many dressed in red MND T-shirts, carrying balloons and wearing ribbons.

We set off up the driveway towards the "great house" and were greeted by a herd of deer, just as ordered. We then went on to the Vista Gate, back around the house to the North Lodge, and into Charlbury. After a picnic lunch, Bruce left with about 20 tough people who had chosen to go on the long walk to Chilson and back through the Wychwood Forest. Jackie led the rest on a more leisurely shorter return trip via Cornbury to our parking place. Everyone had a great time.

Top marks for effort go to Jeannette who managed most of the way on foot.

Thanks to everyone who took part the event has so far raised about £1000 for the work of the Branch in the Oxfordshire area (with more to come!).

Special thanks should go to Jackie and Bruce who organised the event and who are seen here enjoying a well-earned rest at the end of the walk.

You can see more of Jackie's photos of the walk on her Snapfish account.

Coffee Morning, August 15th

Barbara Ferrar held her annual coffee morning in aid of our Branch at the Witney Methodist Church Hall. Barbara and her friends attend the Ducklington Parish Church but the Witney venue attracts more people. The event was very well attended, everyone enjoying the delicious coffee and cakes. Several branch members were able to attend.

Cakes There was also a stall with homemade cakes and jams provided by Barbara's friends. Barbara's son, wife and grandson helped by collecting and helping with our Branch information stand.

Roy Gill and Brenda Cook We were especially pleased to welcome two guests. Roy Gill and his wife, Roy from the Royal Ancient Order of Buffaloes Witney has adopted our Branch as his charity during his year of office, in memory of Barbara's husband who died of MND. Brenda Cook, one of the trustees from the Witney based Bartlett Taylor Trust was also present. The Trust has funded equipment for people with MND who live in the Witney area.

The morning raised a splendid £325 for our Branch.

Moira Climbs Snowdon!

I went to the summit of Mount Snowdon last week. Yes, the SUMMIT! - Moira

Pam, Mark, Nev and Marie, all from my old road running club took me to Mt Snowdon on 11th July. We travelled to Llandundo the day before and stayed at the Premier Inn. This was very good as Pam and I shared a disabled room. We headed off to the Orme on arrival where we debated the views. Could we see the Isle of Man and where was Anglesey? Then we returned to the hotel to change for dinner. I am afraid I opted out of dinner and opted instead for chips followed by the large double bed!

Later that evening when Pam returned and I said "drink?", thirstily, she replied "Yes, I've had a few!". However, I slept like a log and was up early for our trip. We parked at the base of Snowdon. We went on the platform for the train up and the staff were most helpful. An easy ramp and I was on the train. The weather was sunny and the views over Snowdon are absolutely spectacular. It was a marvellous trip up the mountain and over so fast in 50mins.

Suddenly, just 200yds from the top, a mist fell. We got off the train and headed to the cafe and out the other side. Pam said "Do you want to go the summit?" How?, I thought. Facing me were some old grey slate steps twisting round and disappearing into the mist.

A small crowd gathered as people were curious to see if this person in a wheelchair was going to the summit. Pam announced to the crowd what was wrong with me. Suddenly, two blue-plastic-wearing superheroes appeared out of the mist and said "we will help get her up".

So I agreed to go!! On the way up, Mark and Nev carried me (minus chair!) and the superheroes walked behind. I touched the summit! We had been up over 100 old steps and no rails! On the descent,the superheroes took my arms and my friends took my legs!

Marie and Nec ran down the mountain to try and beat the train which they did with great aplomb! More chips at the base as we basked in the sun before winding our way home.

What an amazing trip!

Ayres & Graces

On the 21st June, an open air event with songs, minstrels, troubadors and a jester was held in the riverside garden of the Plough Inn, High Street, Witney. The Ayres and Graces madrigal group performed to much acclaim.

Attendance was good and the evening was thoroughly enjoyable.

Ayres Stalwarts like Jeanette seemed to be doing very well.

Ayres And, newcomer to these events, Jean, reportedly enjoyed the evening greatly.

Of course, there was a drink or two for everyone. But, most important, the event raised over £800 for the Branch. Thanks to everyone who came, and most of all to the organisers who generously gave the proceeds to the Branch.

Family and Friends Meeting

Liz Physiotherapist, Liz Bellido (pictured left) gave a very interesting talk to the Family and Friends Group about the benefits of exercise to everyone for their well being. She said that it was important to get the balance right between enough and not enough to avoid fatigue, so a personal plan was recommended. However she also gave out some general exercises that could be used by anyone.

Jeannette Worton Park provided a pleasant friendly venue in rural surroundings for the meeting to talk about the benefits of exercise to everyone for their well being.

Socialising afterwards provided a chance to exchange ideas and experiences, meet new contacts and enjoy the tea and cake.

Co-operative Society Award

Anglia Share 600

The Anglia Regional Co-operative Society this month made a very generous award of £6000 to the Oxfordshire Branch of the MND Association.

This award is part of the Anglia's Share 600 scheme which started in 1985 and which has made donations to virtually all major charities. The awards are derived from Anglia's Members who donate the dividend from their purchases to Share 600, instead of putting this on their own share number. This scheme has raised over £690,000 since 1985 for local charities and worthy causes.

These awards are designed specifically for the benefit of local branches of the chosen charity. Here, Director Jean Humphreys of the Anglia makes the cheque presentation to David Cairns, our Branch chair in Abingdon. Paula Lloyd and Steve Wing, Managers of the Comfortmaker and Contact Electrical Stores (part of the Anglia Group), and Douglas Boyall, Chairman of the Anglia Group, also gave their time to make the award a special occasion for the Branch.

In Praise of Parks And Gardens

Oxfordshire has an abundance of open gardens, parks and wildlife places, but are they accessible? Well we have visited a number of different ones around Oxford and here is our review of a few of our favourites. Both places are accessible from the centre of major towns with good bus routes. Once in the parks you can get enjoyment if you only walk a short way or explore wider in a wheelchair. For any more details about getting to these places please feel free to contact the Batt-Rawdens on batt-rawden@rosepergola.plus.com.

Abbey Meadows - Central Abingdon

Abbey Meadows is a vast area of parks, play areas and gardens in central Abingdon, but is perhaps its best kept secret as well. Only 5 minutes from central Abingdon the Abbey Meadows comprises of formal gardens, children's play areas, a swimming pool, golf course , the River Thames and a Lock. There are a few free blue badge disabled parking spaces immediately adjacent to Abbey Meadows. Some park in Waitrose and find the route into Abbey Meadows. Once you have arrived you will find the whole area is flat with plenty of accessible paths for wheelchairs and walkers alike. Quite near the carpark is a useful toilet block. The disabled accessible toilet is fine but needs a RADAR key so don't forget yours. You will also find a kiosk selling snacks when it is open. Around the Abbey ruins (which the Meadows gets their name from) you can relax and picnic, or head to the childrens play area and water jets! (if you know anyone who is 5+ they will know what they are!). Your can wend your way along the side of the River Thames or nearby stream. If you are looking for a wheelchair friendly circuit from Abbey Meadows then head to the weir/lock on the Thames about quarter of a mile inside the meadows past the golf course (there is only one bit of the path that needs good driving in a wheelchair) you can cross the main weir which is spectacular in a wheelchair but you will find the lock inaccessible! BUT here is another secret, the lock keeper has a set of ramps and will get you across. Don't forget to get your ice cream at the lock. Once over the lock head down the tow path or road towards Abingdon Bridge, back into town and when you see a double archway on the right in town head through there and within a half mile you are back in Abbey Meadows carpark.

Why we like Abbey Meadows so much is that it really is a family location with something for everyone. For us all areas are accessible, there is a toilet and you can get an ice cream.

University Park - Central Oxford

University Park is just North of the City Centre of Oxford. Parking is difficult on the town side of the park, but if you head for the roads behind the park, particularly the very end of Norham Gardens, you will find free disabled parking with no time restriction and a lovely entrance to the park between two walls. All of the park is completely flat and there is loads to explore.

Entering University Park you may start to think you had entered the set for Logan's Run!. This cult film was based on a world where everyone was around 18-20 years old. As this park is the play ground of Oxford University everyone you see is in this age group.

Getting practicalities out of the way this is a big park and in the middle is the cricket pitch. Head for that and you will find a toilet block with a good open disabled access toilet. On the Oxford side of the park you will also find a mobile stall selling pancakes and ice creams in abundance.

This park is a mix of formal sports ground ponds, tree lined walks and gardens. This including a cricket ground. Several years ago I saw a player bashing the ball all over the park, turned out to be Robin Smith ex-England player. We once went to this park because Susan wanted to put a tree in our small garden a specimen of which was in the park. We found the tree and it was beautiful, only 100ft high and wide!

The last time we went to the park we intended to go through to the Pitt-Rivers and Natural History Museum but the weather was so good we "hung out" on the grass, we saw ducks, punters on the nearby Cherwell and ate ice-cream – bliss. After a hard day relaxing at the park we decided to get some food – the park usually shuts at Dusk so read the boards about the actual time. We headed for Browns at the top end of St Giles. This is a bistro type place inexpensive good food and very welcoming to us. All the restaurant is ramped and accessible the staff were excellent and helpful. The only downer is that there is a disabled toilet on the same level as the restaurant but it is too small to take a wheel chair without it sticking out of the door, blocking the corridor! However it is worth the hassle and you can always use the park facilities first as Browns is about 5 minutes from the park.

Competition

The following competition is from the Batt-Rawden family.

The competition for October is all about lists. Come up with a list of up to 10 things, completely of your choice and give it a heading of your choice. It could be, my 10 favourite TV programmes, 5 songs that make you smile, 2 films that are special to me. The choice is yours. Here is my (David's) list of songs that give me inspiration:

War of the Worlds (both CDs), Land of Hope and Glory, the theme from the film the Piano, Three Lions World Cup song, Piano Man by Billy Joel, Sit Down by James.

The winner will be the list picked out of a hat.

The prize this month is something out of or to do with your list - if you pick 5 movie stars you won't get one of them! but you might get a DVD of one of their films. Happy listing.

David, Susan, Hannah and James Batt-Rawden

Answers to: batt-rawden@rosepergola.plus.com

Previous competitions can be found on our News Archive Page.

Parachute Jump

Richard Richard from Witney who had an uncle who died of MND last September does events for charity each year. This year it was for the MND Association. He did a tandem parachute jump at Weston on the Green airfield on Sunday April 26th. He had a large group of supporters including Jackie Reeves, our Branch Secretary.

Richard Surprisingly, Richard did not seem a bit nervous. The participants went up rather high in what seemed a ramshackle plane and eventually we were able to see them descending with very colourful parachutes. Richard landed safely and found the whole experience exhilarating.

Richard hopes to have raised about a £1000 for the Oxfordshire Branch.

Annual General Meeting

AGM The Branch AGM was held again this year at our favourite venue the Holiday Inn at Peartree Roundabout, Oxford. It is a very accessible and pleasant building. Approximately 30 people attended, and the cakes (made by Branch memebers) and sandwiches were much appreciated!

AGM We were delighted to see Francis again, an older Branch and ex Branch Committee member.

Our Chairman, David Cairns, reflected on his first year in office, and talked about what we had achieved and his aims for this year. He stressed that we need more volunteers as he would like to set up a sub-committee for fundraising. Our Treasurer, Tim Kennedy, described the monies we had received over the year from donations or fundraising and how we spent this for our clients with MND in Oxfordshire. The Branch Committee considers requests for funding carefully each month.

Dr Kirstine Knox, the Chief Executive of the MND Association gave a talk "Our Progress in 2008 and our Prospects in 2009" which was very interesting and informative and resulted in a lot of questions.

One of the points of discussion was the amount we send to the National Association each year and what the Branch receives in return in the way of support.

Jenny Rolfe, Occupational Therapist at the MND Care Clinic, Oxford gave a stimulating talk "Transport and Mobility". She discussed the problems people who have MND might have with walking and showed pictures of mobility aids that might be useful. Jenny explained that the NHS will provide manual wheelchairs, but not all of these are supportive enough. It is advisable for anyone considering a wheelchair to have an assessment so that the right chair can be selected and their long term needs considered. A tilt-in-space wheelchair may be more appropriate.

Jenny also gave examples of powered wheelchairs which can be divided into power-assist and powered wheelchairs. These can be very costly and cumbersome and again an assessment is recommended. People often think a scooter would be useful but this would have to be purchased privately and insurance can be difficult. For someone sitting in a wheelchair pressure management is very important, the use of a TIS wheelchair can often help this problem.

Several Branch members have been concerned about getting around when they begin to use a wheelchair. Everyone with MND who is still driving must inform the DVLA and may need to have an assessment. Jenny showed us pictures of swivel seats and vehicles with adaptations such as hoists. The Motability scheme may help people to obtain the car they need. For more information and links, please see our Information page.

News Archive

The following news stories are now available on the News Archive Page

Oxfordshire Branch Newsletters

The Branch Newsletter contains up to date news about Motor Neurone Disease, not just in the local area, but nationally. It contains useful contact information, news on research, and reports about local Events and Open Meetings.

We are always looking for contributions for the newsletter (and to our Events page). If you would like to contribute photographs, personal experiences of living with MND (e.g. a holiday or trip you have taken), or items that may be of interest to others in the Oxfordshire area, please contact our Branch Secretary.

To request an email or paper copy of the latest newsletter, please contact our Branch Secretary. To download a copy, please click on the link below (opens a new window).

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April 2010

Interview with Val Russell
Oxford Science Festival
Family & Friends
Keep communication going
Study days in the snow
Fundraising
Letters Page

Past Newsletters

The main contents of the past few issues of the newsletter are shown below. If you missed or can't find a previous issue you can request an email copy from our Branch Secretary.

Previous issues of the newsletter can be downloaded by clicking on one of the links below.

November 2009