Historical Archive of Oxfordshire Branch News

The following news stories have been archived as a longer term history of the Branch

Year: 2009

• AGM 2008-2009
• Neurological Alliance
• Jeannette Back Home
• Hannah Gets to 28!
• New Year's Party
• Tenerife Dreaming

Year: 2008

• Off to Australia
• Sea Scouts
• Book Launch
• Thank You Waitrose
• Organ Recital
• Christmas Card Sale
• Family and Friends
• Blenheim Park Walk
• Thank you
• "Lancashire Night"
• Brighton day out
• Michael Wenham

Annual General Meeting: 2008-2009

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!

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.

Oxfordshire Neurological Alliance

The Oxfordshire Branch of the Neurological Alliance had its inaugural meeting at the Kings Centre in Osney Mead, Oxford on Tuesday March 24th 2009. There was a large audience of health care professionals and representatives from Neurological Charities.

Baroness Susan Greenfield was the exciting keynote speaker. She talked with optimism about her field of expertise. Her subject was "The Brain in Health and Disease".

Phillipa Muir and Sue Barnden were the representatives from the Oxfordshire Primary Care Trust. Their talk was entitled "Working together to shape Neurological Services". There was some criticism about the lack of implementation in Oxfordshire of the National Service Framework, but money is, of course, limited.

The last speaker was Fred Davidson from Berkshire who talked about the benefits of having a Neurological Alliance in his area. Guides for people affected by conditions of the brain spine and nervous system can be downloaded from here.

Jeannette Back Home

Jeannette our Branch member who has been to visit family in Australia, clutching her trusty Palmtop communication aid is now safely back home. We have been following her story on our Journal in the communications category.

Here you can see Jeannette with her son, Jeff, who got married to Samantha on September 14th at a wonderful venue on the harbour in Sydney across from the Opera House. She said the wedding was fantastic. From the photo Jeannette looks pretty good herself.

During her stay Jeannette managed to go here, there and everywhere in NSW and caught up with a lot of old friends. Here she is on a family boat.

Hannah Gets to 28!

Valentines Day 14th February 09 was a special day for the Batt-Rawden family - spent at Waddesdon Manor near Aylesbury.

Hannah, daughter of Susan & David reached a magic 28 National Trust Properties filling up her NT Passport by 5 years of age. Hannah first got her NT Passport as a baby and has visited all sorts of places with her Mum and Dad and her brother James. At each property she got a stamp in the passport. James is catching up on about 14 properties.

"We got the idea when Susan's grandmother gave us Life Membership of the National Trust" said David. We have been to fantastic places with the National Trust and have recently got hold of a copy of the NT "Access Guide" to help with visits.

What surprised the family at Waddesdon Manor was that whilst 99 percent of the snow had melted around Oxfordshire at Waddesdon Manor it was still a winter wonderland - getting the wheelchair stuck on a few occasions.

"Whilst most of the older properties don't have lifts you can usually get into the ground floor and around the grounds and shops of most NT properties. The NT staff and volunteers are also really willing to accommodate our needs" said Susan.

Pictured David, Susan (seated) Hannah and James (sitting) on a trip to Waddesdon Manor.

New Year's Party

Our annual New Year's Party took place at the Holiday Inn in Oxford on Saturday January 31st. 35 people attended including our President Colin Blakemore, Susan Passmore from National Office, Fiona Turner our Regional Care and Development Adviser, new Branch members and our youngest member a baby of 6 months. We were very pleased with the number who came but would like even more at the AGM.

We were all welcomed by our Chairman David Cairns who gave a short talk about Branch activities, fundraising and the need for new volunteers and committee members.

Our first speaker was Tracy Phillips, Speech and Language Therapist from the Oxford Centre for Enablement. She gives advice to clients at the MND clinic and provides an assessment service to find the appropriate communication aid for people with MND. The Branch had funded her to go to the health care professional's day at the International Symposium in Birmingham last year. She gave a short Powerpoint presentation of the highlights of the conference for her. She was impressed by the "MND Year of the Care Pathway" and particularly interested in new software called "Alphacore" which provides a comprehensive communication system for people with MND.

For a change from MND topics, the main speaker, Robin Aikten, gave a talk entitled "Can we trust the BBC?" based on his book. He had a long career working for 25 years as a journalist at the BBC. He claimed he was "That rare breed - a Conservative at the BBC". He feels that we should all be aware of left wing bias at the BBC and he supported this by ranging over such subjects as Mrs Thatcher and abortion. Although he did make a representation to the BBC governors about this, they replied that there was no conclusive evidence of systemic bias. His lively and controversial talk was followed by several questions and a stimulating discussion.

Dr Kevin Talbot thanked the Oxfordshire Branch for their continued support to the MND clinic and the health care professionals. Often the only way people can go to conferences is if they have financial support from the Branch.

Tea with cakes followed giving everyone the chance to talk, meet new people, swap experiences and study the Branch literature. Thank you to everyone who helped with the afternoon.

Tenerife Dreaming

Moira has recently returned from holiday in Tenerife, with her travelling companion Karin, where she had a great week acquiring a lovely tan.

One of Moira's presents at Christmas was a microwaveable "Lavender Bag" which apart from keeping her warm during the journey, sent her off to sleep as soon as she hit the sun lounger by the pool!

To see Moira's lively and informative account of her journey and the resort, please visit the Branch Journal in the Travel section.

Moira's trip to the resort Mar-y-Sol was arranged through Enable Holidays.

Off to Australia

Jeannette, one of our Branch members who is mobile but cannot speak any more has gone alone to Australia. She obtained funding for her own Palmtop, a small communication aid with very good quality synthesised speech. The majority of her family live in Sydney and she wanted very much to see them. She left on December 20th won't be back until March 2009.

Jeannette is very adept with her Palmtop but the long journey to Australia was rather daunting. Lots of people helped her contact the airline, get what she needed etc and according to her husband Mike everything went well. She was whisked away through a special entrance at Heathrow and managed to sleep on the journey and is now safely with her family in Sydney.

See Jeanette's story in our Journal in the communications category.

Sea Scouts to the Rescue

The 23rd Didcot Sea Scout Group raised a magnificent £225 for the Oxfordshire Branch. The scouts collected up household bric a brac and held a sale that raised £135 to fight the disease. Another £90 was given as an anonymous donation, making a total donation of £225.

David Cairns, Chair of the Oxfordshire Branch, visited the group at their meeting on Friday evening and accepted the cheque from Scout Marc Hackett. He also spent some time talking to the boys about the illness and the devastating effect it has on sufferers and their families.

Thank you to the Scouts for the superb way they rose to this challenge

Book Launch

For over two hours, popular vicar from Standford in the Vale, Michael Wenham was kept busy signing copies of his book My Donkey Body at The Cornerstone Christian Centre in Grove near Wantage. It has a well stocked bookshop and café serving delicious home cooked food. This Saturday it overflowed with people queueing up to buy the book and have a chat with the author.

Michael's warm personality and gentle humour radiate from the pages as he tells the story of his life and the honest realities of living with motor neurone disease. He also talks of the enhanced pleasure and appreciation he has experienced in his life. It is an inspiring read for anyone. for further information, please see Michael Wenham's story on our Archive page.

My Donkey Body may be purchased (£7.99) from Cornerstone Bookshop (01235 772280).

Thank You Waitrose

The Oxfordshire Branch was chosen to be a recipient of "green tokens" at Waitrose in Witney in September. This is just one of the John Lewis Group's charity activities.

For achieving the most tokens, the Branch received a cheque for £531, presented to our Chair David Cairns by the Waitrose management. We also benefited from the publicity it gave MND and our Branch activities. Thank you to Waitrose/John Lewis for supporting this fundraising activity.

Organ Recital

An Organ Recital was held at St John's College in Oxford on Thursday November 20th in aid of the Motor Neurone Disease Association and to honour Professor Elizabeth Fallaize. Organ scholars performed on the new Aubertin organ installed in January 2008.

Thanks to the College for organising the event and for their generous donations.

Charity Card Sale

The Branch took part in a Charity Christmas Card Sale at Chipping Norton Town Hall on Saturday November 1st, raising £96. Thanks to Stella Waterer and Jackie Reeves.

Don't forget you can still buy cards directly from us FOR NEXT YEAR and raise a little more money for the Branch, please get in touch. Contact our Branch Secretary for details.

Family and Friends Support Group Meeting

One of our Group members, who experienced difficulties using the bus travelling in a powered wheelchair with the added problems of speaking and handling money, wrote to Oxfordshire County Council for help and advice. She also recounted the issues she experiences finding suitable taxis; particularly those who will hold an account for her that would ease her problems. In addition, she finds that holidays incur substantial additional costs for transfers, hired equipment and carer's costs. As she says "Life as a disabled person is expensive!"

In response, Deborah, one of the team of Disability Equality Advisers at the Oxfordshire County Council, came to the Family and Friends meeting on October 3rd at the Holiday Inn, Oxford. She gave us a detailed presentation of the work of her group whose main focus is 'to promote the inclusion of disabled people in the community'.

Deborah explained to the Group that OCC works hard to ensure inclusion and equality for disabled people by, for instance, providing and monitoring bus driver disability training, delivering required information in a 'user friendly' way and taking up issues for customers, among many other projects, to improve the quality of services.

It was generally agreed that, in spite of excellent work being done in this field, the reality did not always match expectation for people living with Motor Neurone Disease and their carers. Deborah has followed up the issue of taxis and buses and one or two of the other issues raised, and says, "That if we can make inclusion work for one extra person or affect the quality of life of one local resident we have achieved something in the right direction."

For some further information about public transport and the disabled in Oxfordshire, please see the link to 'Transport for All' on our Information page.

Blenheim Park Walk

This year on Saturday September 6th we were able to walk through Blenheim Park. Despite the weather, 45 people registered and made this the best sponsored walk we have ever had.

Kirstine Knox our Chief Executive was able to join us with her family.

The Blenheim Park staff were very helpful, opening gates and helping take photos. Everyone said they enjoyed themselves, chatting with new friends and swapping experiences.

The walk has raised a record of over £3400 for the Oxfordshire Group. Thanks to everyone for their efforts!

Thank you to all our supporters

On Saturday 5th July at the Holiday Inn, Oxford, members of the Oxfordshire Branch, their families and friends, fundraisers, volunteers, businesses, and staff from the National Office of the Motor Neurone Disease Association were invited to a strawberry tea to celebrate their contribution to the Branch's success in supporting and raising funds for people with MND in the area.

Midsummer "Lancashire Night"

East Hagbourne Village Hall was filled on Saturday June 21st for a very special "Lancashire Night". Friends of our RCDA, Fiona Turner, organised a great evening. A group called Pure and Simple (pictured) provided the musical entertainment.

We dined well on specially imported Balck Pudding, Lancashire Hotpot and dessert. The event raised a magnificent £920 for the Oxfordshire Branch. Thank you all for your efforts!

Moira's Day Out to Brighton

On the 24th July, one of the hottest days this year, Moira McIver went to Brighton for the day courtesy of the Oxfordshire Branch of the MND Association. Wheelchair accessible transport was provided by "Quality Care & Travel".

Moira's lively and informative account of her visit to the Pier, Brighton's "Lanes", and Pavilion Park is in the latest issue of the newsletter.

Have some media m'dear - Michael Wenham

For some reason a vicar with MND - which is what I am - became a news story on the BBC.

It was a chance comment of a church member that led to my being interviewed for The Door, the Anglican newspaper serving Oxfordshire, Berkshire and Buckinghamshire.

To be more accurate, my wife Jane and myself were interviewed for the 'God in the life of...' feature in January, by an excellent journalist, Rebecca Paveley. Her aim was to let us speak and she succeeded (with one minor inaccuracy - which was not bad for a full page spread!).

My fear was that it would make me sound like a celebrity or a saint - both of which are far from the truth. Everyone with MND will know the frustrations (there must be a better word to describe the daily grinding and frustrations which are part and parcel of the disease) and its unremitting juggernaut, frightening, inevitability. Well I'm not immune. I hate the beast. One part of the article which elicited most response was talking about dying, which I admit I don't look forward to - even though I do believe in a better afterlife. But that doesn't help dealing with the present, does it? I suppose the 'God in the life of' bit was best summed up by the discovery that as I get more and more useless, I become no less valuable to God. That's something I've discovered from people who surround me, in the church, the village, and my family who seem to love me nonetheless.

Next, BBC Radio Oxford contacted me. They'd seen the article. Would we be interviewed for the Sunday night programme Journeys? So Mike Beaumont came to see us in our home in Stanford-in-the-Vale. After the interview, he warned me that my voice might be a problem, so would I mind if it was dubbed or summarized? In the event it was dubbed by an actor. And when I tuned in to the broadcast, I could see why. Jane's voice was clear as usual, but was that how I really sound? It was sobering how much worse my voice sounds outside my head! How does anyone bear listening to me when I'm taking a service or, worse, preaching? Again, the broadcast produced feedback, including from others in our sort of situation. The catch question of this interview was, 'You're a Christian. Why do you think God allows something like this to happen to you?' My answer was the same as Roy Castle's about his cancer, 'Why not me?' I don't believe God insulates us against the harsh realities of life, but I've found He's still there with me through it all - and that helps.

This media business must be addictive, as I've now written a book, My Donkeybody, published by Monarch. It's about having a stubborn ass of a body which is steadfastly going on strike. I hope it will help people understand more about this diabolical MND and how precious life still is.

[Editor's note: If you are interested in purchasing Michael Wenham's moving account of living with MND, you might try the followng link My Donkeybody ].