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Sarah - Interview 21  

Sarah - Interview 21

Age at Interview: 41
Sex: Female
Age at Diagnosis: 34
Background: Sarah is a full-time mother (formerly secretary), divorced, with 2 children aged 6 and 9. Ethnic background/nationality: White British.
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.

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The hospice is a warm and kind place. They helped her draw up a Living Will. She does not want invasive treatment. [Voice software interview].

 



But I really found the best help within my local hospice which my MNDA visitor advised me of and I started attending around February 2001. I was not interested at first but I was so low that my brother arranged an appointment with a doctor there. I can safely say at that point I was disillusioned and disappointed with the doctors I had met. My GP seemed more shocked by my diagnosis than I was. I let my obstetrician persuade me to be induced and have an epidural (because of my diagnosis) and found the birth more painful and distressing than the birth of my first child where I only needed Entonox. So I didn't hold out much hope when I heard that I was going to see a hospice doctor. 

After diagnosis I was sent to various hospitals for speech therapy, physiotherapy, breathing tests and x-rays and it was exhausting. I decided I couldn't trust anyone within the medical system. Thankfully that changed when I went to the hospice. I was no longer pushed from pillar to post and I receive everything I need there. Coldness has been replaced by warmth and kindness. I have had many treatments there, including aromatherapy, healing, hydrotherapy and I use their gym twice a week. I'm sure that I would be weaker if I wasn't exercising regularly; I still walk with assistance and feel very well generally. 

I have stayed there twice for respite care, both times because I was very depressed and couldn't cope at home. I found those stays reassuring and comfortable, perhaps because many of the staff know me. I would rather stay in the hospice than a hospital and have made a Living Will stating that and also that I don't want intervention such as feeding tubes or ventilation. I know that my opinion might change as I become sicker but I've felt this way since diagnosis and don't anticipate that changing. I definitely don't want euthanasia because I don't think I have the right to decide when to die. I'm quite angered by the way the media always associate MND with euthanasia because there are so many people living a fairly happy existence regardless of MND.
Jonathan Miller - Motor Neurone
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