Motor Neurone Disease (MND)

Maryse - Interview 06

Female
Age at interview: 74
Age at diagnosis: 72

Brief outline: Maryse was diagnosed March 2005. She was told she had 2-3 years to live. Within months she could no longer live independently and moved into a nursing home. Her speech deteriorated rapidly.

Background: Maryse is a retired senior university lecturer, widowed with 2 adult children. Ethnic background/nationality' French.

Audio & video

(Maryse's daughter was also present and contributed to the interview)

Maryse first noticed symptoms in early 2005, around a year and a half before she was interviewed. She had recently taken up flying lessons and had passed a stringent medical to be allowed to fly, but soon after her first course of lessons her leg started to feel floppy. She went to her GP, suspecting it might be multiple sclerosis or motor neurone disease. Although her GP thought either diagnosis was unlikely she referred her quickly to a neurologist, and MND was diagnosed in March 2005. Maryse was told she had 2-3 years to live. At the time she did not cry, but now she often feels tearful when she wonders how much worse she will get.

Her condition has deteriorated quite quickly. She had to stop driving in July, and by September she needed a carer to help her get washed and dressed in the morning. She had lots of help from friends and help from social services with equipment such as a stairlift, but it soon became very difficult to manage at home. She moved to a nursing home in a different part of the country in January 2006, so she could be nearer to her daughter, although it was sad to leave her friends behind. At this stage Maryse was still able to walk with a Zimmer frame, but within two months could not walk at all. Her breathing and swallowing have become more difficult, and her speech began deteriorating rapidly. She takes riluzole, but does not feel it is having much effect on how fast her symptoms are progressing. It seems to make her feel very hot all the time.

The nursing home has become home now and Maryse feels well supported there. However, when she was admitted to hospital recently for a test, she felt the nursing care was very unsympathetic and that staff did not seem to appreciate her needs as a person with MND. They did not get her to the toilet on time, and later made her lie on her back when she wanted to be on her side. She was so upset she demanded to be taken home, but felt no-one was listening and they were treating her as if she was senile. The nursing staff contacted her daughter who told them to respect her wishes, so eventually they called a taxi and she went home. She never wants to go into hospital again. Similarly, although her first GP was excellent, two GPs she has seen since do not seem to know much about the condition or how to care for someone who has it.

Maryse knows she will die soon, and she does feel frightened and sad sometimes, but she feels lucky that she is not in pain and that she is in a place where she is well cared for.

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