Diana's story

Diana Ingrey, Stoke Newington

Four years ago Diana Ingrey was doing the job she loved, as a special educational needs co-ordinator at a primary school. She was fit, fiercely independent and planned to work until she was 75 - after all, she could still run up an escalator!

One day, she was running after one of the pupils in the playground and she tripped and fell. One of her feet felt strange and she couldn’t lift it properly. She started finding it difficult to stand at the bus stop for long periods of time, and so started getting a cab to work. Eventually she sought the help of her GP, who thought it could be a back problem, possibly a trapped nerve and she was referred to an orthopaedic doctor. Unfortunately this didn’t help and six months later she was referred to neurological services where she was diagnosed with Motor Neurone Disease (MND).

Diana didn’t know much about MND,so she looked it up on the internet.There are different levels of MND and thankfully hers wasn’t the most serious kind. She got very tired, but it didn’t affect things like her swallowing. Sadly, Diana had to give up her job which upset her, and she moved from her lovely flat in Stoke Newington High Street into a warden-controlled flat.

It was Christmas time two years ago when Diana started to have problems with her breathing and she was admitted to hospital for two weeks. From there she was transferred to St Joseph’s for a few weeks’ respite care. Diana already knew about St Joseph’s as her brother Alan had spent some time here 6 years earlier. He was living in Germany when he was diagnosed with multiple sclerosis and was very soon bedridden. Diana arranged for him to come back to England and he spent his final days at the hospice. Diana remembers how well he was cared for:

“The nurses and staff were absolutely marvellous; they made such a difference to the end of his life, the support they gave to him and to me was exceptional.”

Diana spent two weeks at St Joseph’s being “built up”. She had very little strength as she hadn’t been eating properly, so she was recommended a special diet, which really helped. After she was discharged from St Joseph’s Diana came to the Neuro Group every other Monday which she really enjoyed, spending time with other people with similar problems. She also did an 8-week course, once a week with the Occupational Therapy team called Re-energise, which gave her strategies to help her manage her fatigue. Her expectations were high, and she pushed herself hard, but by working with the group, she was able to change her mindset and rest when she was tired. She was then able to plan her day to avoid peaks and troughs of energy and eventually was able to go out into the garden to socialise with her neighbours. Diana found that managing her fatigue better led to more positive outlook on life overall.

Since her diagnosis, Diana has been through many stages, first of all anger at not being able to do things that used to be so easy, but the Re-energise programme helped her to adjust accordingly and make the best of it. She said “Most people can’t run in their seventies let alone run up an escalator and I was lucky enough to have my health and do a job I loved for many years so I am thankful for that.”

Diana is still in regular contact with the Occupational Therapist team and she plans to come back in to St Joseph’s later in the year for further respite as it really helped her last time.

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