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Sarah - Interview 21

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.

More about me...

(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. 

 

She developed symptoms in pregnancy. She believes the neurologist knew at once what was wrong but...

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I was diagnosed with Motor Neurone Disease in April 2000 whilst 7 months pregnant with my second child. My only apparent symptoms were slightly slurred speech, weakness and muscle wasting in my left arm; they appeared suddenly in February that year and I thought perhaps I'd had a mini stroke. Looking back I've realised that my very first symptom, emotional lability, started around April 1999. I would laugh or cry excessively and inappropriately and it bewildered and disturbed me because I couldn't work out why it was happening. 

I mentioned my symptoms to a doctor during an ante-natal check up. He referred me to a neurologist and I waited from February until April 2000 for an appointment. Considering I was pregnant I think a two month wait was unacceptable although in my case it didn't make any difference because my form of MND isn't hereditary. I do worry about my children developing it, although there's no history of it in my family, but what if I'm the first? And if I was told it was hereditary I wouldn't have had the option of aborting because I was kept waiting (although I'm thankful I didn't have to consider abortion). I only received an appointment after numerous phone calls and was then told I'd been lost in the system and there was a long waiting list. 

My appointment, when April came around, was impersonal and cold. My neurologist recognised my symptoms immediately I later discovered and booked me into hospital for tests that same week. She wouldn't tell me why but I knew it must be serious from her haste. I burst into tears after leaving her office; that was the emotional lability, I'm sure. 

I had several tests including a lumbar puncture, EMGs, brain scans and answered numerous questions from doctors. They gave nothing away although I fired questions at all of them. I'm plagued by their lack of honesty now; I function far better when I know the truth and by keeping me in limbo they actually tortured me. I'm aware they were trying to protect a young pregnant woman but surely honesty is imperative in a situation such as this? I know they couldn't diagnose me without running all the tests but if I was told what they were testing me for they would have empowered me with choice. I could have chosen whether to have a lumbar puncture which left me flat on my back for two days or whether to have two sets of extremely painful electrical muscle tests because they botched the first set. 

Because it was a teaching hospital, when asked I'd also agreed to take part in a session where doctors from other hospitals would observe me. I walked into a sizeable lecture theatre with about 40 people sitting in the audience which I wasn't expecting at all. After an examination they started shooting questions at me and my response was to just deny everything! I now think that was an insensitive situation to put me through knowing almost certainly what was wrong with me.

 

Organising care was hard at first but now she has a great team of dedicated people. With their...

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My mum and brothers built a wall around me and made me feel safe and protected even though they were struggling emotionally. I admire their strength and devotion to me and love them very much. I also have great friends who will do anything to help me. Unfortunately, none of them were able to care for me full time which I understand of course.

I was appointed a social worker and an occupational therapist to attend to my care needs and adaptations to my home. However, this didn't happen automatically but as I was finding daily living increasingly difficult I blundered around trying to get help. Because I'm Jewish I contacted a local Jewish family centre and they gave me a Social Worker. She only worked part-time and had very little experience dealing with care packages or agencies. When she left the organisation I was without a Social Worker for about one year. I was eventually appointed one from my local council who is fantastic and sorted out the mess that was my care package. I really think Social Workers should be appointed on diagnosis because this was a cause of enormous stress and worry to me for several years.

My first Social Worker arranged for care from an agency for a few hours every day which eventually increased as I became more disabled. Because I had a baby, whom I dropped a couple of times (poor mite!) I was given more care hours but my Social Worker was always reluctant to ask the council because of her inexperience. I became an employer to the carers which I wasn't prepared for at all. They walked all over me but now I have learnt how to choose carers and have a wonderful team helping us. I was given full custody of my children after my divorce and have carers working here all the time doing day and night shifts. I was also given 15 hours care per week for the children by the children's division of Social Services which is an enormous help. I'm so grateful for the support I have from Social Services because I know that people living in other countries are not as fortunate and really struggle financially. I also have to give credit to my carers, who are not particularly well paid by most agencies, but care for us with such kindness. There are some amazing people around and the benefit of having MND is that I have met some of them.

I had someone from the DSS come here and help me apply for benefits. At the moment I receive Severe Disability Allowance, Disability Living Allowance and Income Support. I also receive help to pay the interest on my mortgage and thankfully am able to manage quite well on this income.

My Occupational Therapist had the difficult task of convincing a fairly able woman who was in denial to make significant adaptations to her home which I strongly resisted. I didn't want to stop using the stairs or climbing into the bath whilst I could. But when the care agency carried out a risk assessment and threatened to pull my care I had no choice. The council kindly gave me a grant to provide a walk in shower, through floor lift from lounge to bedroom and an outdoor lift. I also appreciate this support very much because I'm able to live very comfortably in my own home.

 

After some frustrating failed experiments with voice software, she successfully uses a system...

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There's one piece of equipment I would recommend to everyone with MND and that's a computer. Having been an extremely active woman, losing the use of my arms was devastating. I was also a very tactile person and missed hugging the children most of all. Then I started to miss practical things like using my computer, reading books and newspapers, writing letters and everything else that we all take for granted. 

The first piece of equipment I asked for was a page turner to enable me to read. My MNDA visitor told me that they were ineffective and very expensive. With a young baby and myself to tend to, my carer didn't have time to sit with me and turn pages over. So reading was OUT and how I missed that. I consoled myself with audio books but they weren't the same as seeing the words and being able to go back and read bits again. 

I contacted my local physical disabilities day care centre and they gave me a program and switch so I wouldn't need to use my hands to work my computer. Both the program and switch were totally wrong for me and after a few frustrating attempts I gave up using my computer. I had made friends with people here, in Australia and America all with MND, via email and chat rooms and was sad to lose that contact. Unfortunately, I did not pursue an alternative at that time because I was having so many other problems. 

My speech was also deteriorating. My speech therapist gave me a Lightwriter with a pressure switch that I operated with my foot. The pressure on the switch constantly had to be adjusted with a screwdriver which was another unbearable frustration. It was easier to repeat myself umpteen times or try to spell words out, than use the Lightwriter. 

So I spent a few years without a computer during which time I was depressed and bored. Then my MNDA visitor said that she had seen a man with MND using a laptop with a chin switch. She arranged for a specialist computer company to come to my home and demonstrate and with the help of the MNDA and a couple of other charities, I was able to purchase a laptop, a program called EZ Keys, a chin switch and have some training. 

I'm never bored anymore and I believe technology has saved me. I read e-books and it's fantastic being able to read again. I have developed a passion for writing and am writing my story and some articles which I hope will be published. As my body has become progressively disabled I feel that my mind has become sharper and I enjoy a good mental challenge!

 

She became very depressed and tried hypnotherapy and counselling. The hospice medical director...

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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.

 

Her husband couldn't cope and left. She thought no-one could find her attractive but she met...

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My computer also helped me pull and I think I'd better explain myself before it sounds like I've been trawling the internet looking for a man! From diagnosis my marriage started to disintegrate; I don't know whether that would have happened eventually, regardless of MND but the pressure of having a terminally ill wife was not something my ex-husband wanted. He was used to me running our home and I was a very competent wife and mother. I used to work as secretary before my children were born and was organised and efficient (I still am!) The shock of diagnosis and having a new born baby and 3 year old to care for was terrible for me, especially when I started losing my motor skills. We had to rely on carers and he hated that. 

He soon became verbally and physically abusive to me and as my speech began to deteriorate he started to mock me. He moved out of my bed very early on so that was the end of my sex life which I found really sad. My self-esteem hit an all time low and I felt like a freak. In August 2003 I couldn't put up with it anymore and he left our marital home. Two days after he left I went to court and obtained a non-molestation order and that kept him away from me for a year by which time we were divorced. The crying and hurt slowly disappeared and I have peace now. I also have great sadness that the man I loved and believed loved me couldn't support me through my illness. 

So I had myself down as physically repulsive and didn't believe any man could find me attractive again. I was wrong because in August 2005 I met a man who was able to see beyond my illness and see my personality. We have a sex life and don't let my disabilities get in the way. He makes me feel beautiful and I don't feel ill when I'm with him. Email helped our relationship along but he understood me well within a very short time, so it's great being able to converse with him. I don't know if our relationship will last but I'm happy that we met because he changed my perspective of myself with MND. 

In conclusion I have to say don't ever presume that a diagnosis of MND is the end of your life and you can't be happy. I spent about 3 years wishing I were dead and I spend most days now being thankful that I'm not. I'm grateful for every moment with my children who are growing into kind and caring individuals. I think they have benefited from seeing MND close up and although I wish that I were able to do more for them I like to believe they haven't suffered too much because I'm ill. Life with MND isn't a bed of roses but it is bearable if you have the right support and a positive attitude.

 

The hospice is a warm and kind place. They helped her draw up a Living Will. She does not want...

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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 (ADRT), 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.
 
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