Sarah - MND

Age at interview: 41

Age at diagnosis: 34

Brief Outline:

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.

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The medical director at her hospice helped her through a terrible depression by persuading her to...

I see the Medical Director at the hospice and he respects my wishes. He is honest with me and patient and as I experience new difficulties we discuss them and decide together how to proceed. He has pulled me through terrible depression by persuading me to take the antidepressant mirtazapine which has really helped me. Before I took it I had no appetite and couldn't sleep which was making me very weak so I'm quite sure they have kept me alive and possibly made my condition stable. I think depression is a far more debilitating illness than MND but unfortunately the two often go hand in hand. I resisted antidepressants for years because I didn't want to become dependent on what I then considered to be happy pills. I would never stop taking them now and believe neurologists should strongly recommend them to patients on diagnosis.

 

I definitely needed more emotional support from the medical profession early on but sadly, probably due to time restraints, none was forthcoming. I paid to see a private hypnotherapist and we worked on positive imagery; it just lulled me into a false sense of security and dented my bank balance. I was desperate for emotional support and felt rejected by everyone that I turned to. The counsellor at my surgery said she couldn't make me feel better but I could cry on her shoulder. I decided to cry on my own shoulder. I come from a traditional Jewish background but received no support from the three rabbis I contacted. The therapist at my hospice was fairly elderly and kept nodding off during our sessions which I quickly gave up. My hospice doctor rescued me mentally by letting me discuss my feelings and giving me advice. I can email him whenever I have a problem or just if I feel anxious or low and he always writes back. Because I can't speak well on the phone this communication is a life saver and I know most doctors wouldn't do the same for me. I believe I'm extremely fortunate to have met him.