Oxfordshire Branch’s 30th Anniversary year reviewed at the AGM and Lunch
Michelle Ward, branch Chair, was delighted to announce that over 30 events and activities had been achieved during the branch’s 30th anniversary year.
Support for people with MND and their families is an important priority of the branch’s work and the Family and Friends support groups have gone from strength to strength with the addition to our regular meetings of the meetings in Banbury in the north of the county on the alternate months. The branch contact and Association Visitor is always on hand to keep in touch and provide information and the good news is, that a new Association Visitor is now in training but the branch would still like to recruit more of them.
Various grants have been given to help with financial support as we know that the costs involved with having MND are considerable. This would not be possible without the funds our supporters raise in holding events large and small, coming on our annual Branch Walk and sending donations which amounted to an income of over £15,000 this year. All of them are much appreciated and deserve huge thanks along with all who give their time as valuable volunteers at branch activities. Mike Beaumont, treasurer, explained that a proportion of our funds are annually transferred to the Association’s central funds for things like research, financial grants and projects to improve care.
Michelle announced that after many valuable years contributing, Anne Silk would not be standing for the committee again, neither would Liz Lewis but she welcomed Kevin O’Neill as a new member. Volunteers are always welcome and there are various different ways in which they can help, so do ask if you are interested.
The AGM concluded with an inspiring quote from Stephen Hawking; thanks to those providing the enjoyable lunch and to everyone for coming along to share the day.
“Remember to look up at the stars and not down at your feet. Try to make sense of what you see and wonder about what makes the universe exist. Be curious. And however difficult life may seem, there is always something you can do and succeed at. It matters that you don’t just give up.”
Stephen Hawking 1942 – 2018
The AGM was followed by a talk about….
Making the most of life with MND by Kaye Stevens who began by describing her role as the manager of the MND Association’s Information service.
She recalled the words of Stephen Hawking, the Patron of the MNDA who had recently died. He said that he did not let MND define him. He said his quality of life was not measured solely by his physical capabilities. For instance his slower verbal communication gave him additional thinking time when talking.
The MNDA Care Information Service is focusing on helping people to make the most of life with MND and is developing quality of life information about MND. She noted that MND is a complex disease and that people’s needs are different. Consequently much information is available and it can be an intimidating task to read it all or use some of the new formats the MNDA is developing.
Kaye outlined the thinking on quality of life which means different things to different people. It can be defined as comprising five key aspects:
- physical health
- psychological states
- social relationships
- personal beliefs
- relationship to the environment
Data from people with MND shows that physical health impacts less on quality of life than do psychological states. The MNDA is looking at how it can better support the psychological and emotional aspects of people’s lives. Quality of life might be defined as having a sense of self and of purpose. And satisfaction with life might be described as there being no large gap between expectations and reality. MND brings unwanted change but humans are adaptable so that expectations can change too. Information can help in this area and so help people with MND adapt their expectations to the changing reality of their lives.
Kaye described the work the MNDA had done with a couple where the husband had difficulties with eating because of his MND. However he wanted to carry on eating out and socialising and enjoying food in company. Information could not change his MND but it could give him information and advice on how to manage eating and drinking and continuing to enjoy it. So the MNDA produced a guide on adapting foods, menus, recipes, swallowing and eating out in a way that added enjoyment to the experience. This approach is new and is also helpful for professionals caring for people with MND.
Kaye said that the MNDA had researched the expectations of people with MND about food and eating. A survey had been carried out, as had telephone interviews with people with MND, their families and carers. A cookery event had been held for people with MND, a dietitian and a Speech and Language Therapist. One of the notable things learned at the event was that people with MND may not be aware of how to eat to maintain their health. For instance people were avoiding foods with a high fat content because that is the advice for healthy eating. But for people with MND it is more important to maintain body weight than it is to avoid high fat foods.
The findings from the research and the event were tested and three chefs – Prue Leith, Levi Roots and Daniel Docherty – have been involved in producing the guide which includes information about food and eating, including recipes. There is information about tube feeding in enough detail to enable people to ask questions about it but not be put off. The guide, Eating and Drinking with MND, has been endorsed by the British Dietetic Association and the NHS. It has had a good response from people with MND and their carers. The guide provides information and help with humour and looks appealing, enabling people to provide love, nurture and support via food.
Also …. a new publication is available with the title Making the most of life with MND. It is written in a very positive way outlining challenges, what might help and who can help. It includes information on communication, using your hands, feeling tired, staying positive, work and employment and how the association can provide support.
Both guides are available on request from the Association.
By Lesley Ogden and Lynda Wigley