Motor Neurone Disease (MND)

Sarah - Interview 21

Female
Age at interview: 41
Age at diagnosis: 34

Brief outline: Sarah was diagnosed 7 years ago when 7 months pregnant with her second baby in 2000. Now she cannot use her arms or walk unaided, and her speech is affected, so she uses voice software to communicate.

Background: Sarah is a full-time mother (formerly secretary), divorced, with 2 children aged 6 and 9. Ethnic background/nationality' White British.

Audio & video

(Sarah was interviewed at first in writing via e-mail, and then using her computer to speak the text on video).

Sarah started noticing symptoms about 7 years ago (2000), when she was pregnant with her second baby. Her speech became a little slurred and slow, and her left arm felt weak. Looking back, she thinks she started experiencing unusual or extreme emotions (emotional lability) about a year before that, but did not realise at the time that it was significant.

She mentioned her symptoms to her doctor during an antenatal appointment and was referred to a neurologist. She spent three days in hospital having tests, and found it difficult to get anyone to answer her questions, though she thinks the neurologist already had a good idea what the diagnosis would be. She took her husband with her to the appointment to find out her results but he did not want to wait and left before the appointment. As a result, she was alone when she heard the diagnosis, and left the room feeling shocked and dazed, with no written information to take away. She called her husband on a public phone to tell him, and got a taxi home. It was a Friday afternoon and the MND Association helpline number she was given was on an answerphone.

She was told she had both bulbar and limb onset MND. For a long time Sarah did not tell anyone except immediate family, and they all kept hoping the diagnosis was wrong and she would recover after the birth, but her symptoms have continued to progress slowly. Now 7 years on she can still walk with help, but has no use of her arms. Her speech is only understandable to people who know her very well.

Her mother and brothers have given her huge support, even though they also struggled to accept what was happening. However, her husband was unable to cope with the diagnosis, and could not accept or support Sarah as she now was. Their relationship deteriorated and he finally moved out about two and a half years after the diagnosis. They have since divorced. Sarah felt very depressed and alone for some time, but more recently she has entered into a new relationship and is happier.

As she comes from a Jewish background, Sarah initially turned to a Jewish family centre for help. They appointed a social worker but she was inexperienced and left the organisation shortly after. Since then Sarah has found a social worker from the local council who has been really helpful in sorting out her care package. She has also tried to get spiritual support, but found the three different rabbis she turned to unhelpful.

Two things have been especially important for Sarah. One is the excellent and caring support from her local hospice, where she goes for treatment and exercise sessions, including aromatherapy and hydrotherapy, and occasional respite care. Her doctor at the hospice has helped her talk about her depression and persuaded her to take antidepressants, which has really helped her. Secondly, having access to a computer with voice software which she can operate by a chin switch has been a major turning-point, giving her back the ability to communicate, to read books, to write and to find information. 

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