Wendy Weyman's Life Story (by husband Keith)

Wendy Weyman, who died suddenly of pneumonia on 27 February 2007, aged 68, was diagnosed with Limb Girdle Muscular Dystrophy when she was 20 years old; two years before the launch of the Muscular Dystrophy Campaign.

Wendy was an accomplished pianist and organist, a promising tennis player, a keen gardener and a lover of the countryside. As her condition progressed Wendy had to stop playing tennis; but for the rest of her life she maintained her interest, watching many of the tournaments on television. She continued to play and teach the piano until the mid 1980's when her arms became too weak to cover the keyboard. Undaunted, she acquired an electronic keyboard that she continued to play until 1995 when her arms again became too weak to play. But her passion for music continued and she attended concerts and listened to recorded music.

Born and brought up in Gloucester, Wendy was a pupil at Denmark Road High School for girls. It was here that she excelled at ball games and was regarded as an academic high-flier. Wendy left school to take up a post at Gloucester City Library, as a trainee librarian, with the intention of studying for a degree in librarianship. Sadly this was not to be realised with the diagnosis of muscular dystrophy in 1958.

Wendy and I met while she was employed at Gloucester City Library, we were married in 1961 and our son, Andrew, was born in 1963. Despite being told by medical experts that she would not be able to maintain her balance whilst pregnant, Wendy remained ambulant throughout this period – determinedly proving the experts wrong, and not for the last time.

In 1965 the three of us moved to Worcester where I, now a qualified librarian, took up a post at the City Library.

In 1967 Wendy obtained a provisional driving licence. However, this was the mid-1960's, and the general view was that disabled drivers should be confined to precarious devices sporting only three wheels, for people with no friends (there was only one seat) and available in any colour you like - so long as it was sanitary-ware-blue. A better solution was needed - so Wendy tried a car with automatic transmission, took to this like a duck to water, and passed her test at the first attempt in 1968. This opened up a whole new world for Wendy and her family. Wendy continued to drive until 1980.

Like many others, Wendy was determined to do her utmost to stave off the day when she became wheelchair-bound. Walking was possible provided she was able to maintain her balance. However as her condition progressed she found it increasingly difficult to stand from a sitting position. In 1976, two motorised sit-stand / assisted riser chairs were acquired, one for the living room and the other for the bathroom. Both chairs enabled Wendy to stand so that she could gain her balance which allowed her to walk. Our home was laid out with pieces of furniture strategically placed so that she could steady herself as she moved around. At around this time a manual wheelchair became a necessity when moving about out of doors. These simple living aids allowed Wendy to maintain her independence for the next 10 years. This allowed her to keep her home effectively free of the unsightly clutter of the contraptions inflicted upon the less able. For Wendy 'living aids' were to be resisted – on the grounds that each new addition was a very real symbol of her diminishing ability and, above all, due to their aesthetic impact on her environment.

In 1985, Wendy had a serious fall, resulting in a broken leg and a three month stay in hospital. Although many believed she wouldn't manage it, with great determination and the help of her family, she managed to get back on her feet again; and was able to walk around the house as she had before. The stay in hospital, though, meant that there had been no opportunity for a summer holiday. In view of Wendy's preference for warm conditions the question was raised where to go? A travel agent friend suggested that Eilat on the Red Sea (Israel) offered a warm climate during our winter months, moreover it was pointed out that, in view of that nation's troubled past, levels of provision for the disabled were good and, in many respects, exceeded those, then, present in the UK. The holiday was a great success; the warm climate gave Wendy a great psychological boost. We holidayed in Eilat on thirteen more occasions. Planning is the key to the success of any holiday, EL-Al airline were fully briefed of our requirements and were first class in attention to detail and care.

In 1986 Wendy was diagnosed with breast cancer. This was successfully treated although, perhaps understandably, she did ask “why me?” But, again with family support and her positive attitude she made a full recovery.

Wendy regularly accompanied me to the annual Public Library Conference and weekend study schools, playing her part as hostess to visiting speakers, including government ministers and, on occasion, meeting members of the royal family, drafted in to open new public libraries. She was never phased by anyone she met, no matter how grand their title or social position.

In November 1989, Wendy had another serious fall resulting in two broken legs, kneecaps and one ankle. After a stay of four months in Worcester Royal Infirmary she was transferred to Oswestry Orthopaedic Hospital, with a view to getting her back on her feet. This she managed to do, however, unfortunately she fell, this resulting in a hip replacement. Tests revealed that osteoporosis was quite advanced, this likely precipitated by the limited movement enforced by her MD condition. She was never able to walk again.

Immediately, following her hip replacement she returned to Worcester Royal Infirmary, but after a period of four months decided that after a couple of near-misses (i.e. injuries associated with the care regime) she would discharge herself. She always maintained “you need your wits about you when you are in hospital! [if you are not to come to any harm]”. Even if she could not walk Wendy reasoned that if she could weight bear I could lift her to a standing position to allow transfers from wheel chair to car, or bed to wheel chair etc. These transfers were only possible using a turntable device. This aid was invaluable for the rest of Wendy's life, as it allowed me to lift her to a standing position and pivot her through 90 degrees. This solution was far more portable, less distressing and more convenient than having to use a hoist.

From 1990 onwards, Wendy used an electric chair and an Arjo bath hoist and transfer chair – but it was the turntable that was the real key to being able to maintain a relatively normal life style. More than any other it was this device that allowed further trips to Eilat, France in 1996 and the USA in 1998. American airlines were first class, flying from Birmingham to Chicago. We were boarded last at Birmingham and first off at Chicago, after all 7hrs is a long time without access to toilet facilities. The USA was a revelation, disabled facilities were everywhere combined with the indigenous population's great willingness to help. We both agreed that we should have had the courage to take this trip before.

Wendy enjoyed an active social life corresponding with many friends and family. There was nothing she liked more than to have the family around her. She was very supportive of others, particularly when people were experiencing difficulties in their lives, writing or telephoning to give them encouragement and support. She had an amazing ability to understand other peoples' problems, while at the same time coping with her own.

Largely a reflection of social attitudes and standards of access provision that were the norm until quite recent times, Wendy had not been able to pursue her promising career as a librarian. This meant that her home life was very much in the traditional mode, focused on domestic tasks. These she performed over the years to the extent that her, gradually diminishing, physical abilities allowed, delegating where necessary, to her staff (me and Andrew) both of whom routinely failed to maintain the family home to her exacting standards – I, in particular, benefited from her expert direction and acquired cooking, washing and gardening skills - well beyond my natural potential.

From 1990 – 1998, while I was at work Wendy was supported by a Home Care assistant. Wendy developed a firm friendship with her carer and they kept in contact after even after I retired and took-on the full-time carer role.

A holiday to Northern Ireland in 2001, was the last venture aboard. By this time Wendy was beginning to suffer from postural problems, as her dystrophy started to affect her supportive muscles, and her arms to a greater extent than before. Life became more difficult, her breathing was also becoming a problem. There were constant visits to hospitals, but she somehow kept her spirits up. The medical advice she received during this period was variable. Some appearing to be considered, taking account of her condition, and the need to support the 'normal lifestyle' she held so dear, and which kept her going, on other occasions less so.

For Wendy her condition was a source of frustration, an annoyance, an inconvenience, not the thing that defined her. She fought long and hard to maintain as normal an existence as possible, and I am firmly of the belief that it was this determination and the commitment of her family that allowed her to continue to enjoy life for as long and to the extent that she undoubtedly did.

Her initial prognosis in 1958 was that she would be unlikely to survive beyond the age of 30. As she had all along the way, Wendy managed to prove them wrong, being just two months short of her 69th birthday when she died. As far as is known Wendy lived around 20 years longer than any other woman diagnosed with limb girdle muscular dystrophy. Her specialist felt that Wendy's strength of character and resolute determination, combined with the commitment and support of her family, were key influences on her relative longevity.

Wendy and I were together for 50 years, we did everything together and decided early on that if we remained positive we would always be able to achieve - if the determination and will power are there, you can find ways around disability when it becomes a barrier to doing what you want to do.

Wendy was a remarkable woman, who faced up to her disabilities, and with the love and support of her family lived a life full of achievement and happiness.