Motor neurone disease: 'I try to live from week to week' - Features - Health & Families - The Independent

Motor neurone disease: 'I try to live from week to week'

To Rob Hastings, she was an inspiring and energetic English teacher. Now, Lindy Jones has motor neurone disease – and has devoted her talents to a moving and funny memoir

There are two things in particular that I remember from lessons with Ms Jones – as I still instinctively want to call her nine years after our A-level English class left that room on the top floor of the sixth-form block at Edmonton County for the last time. The first was the drive of her dramatic energy: her ability as a teacher to use her emotions and ours to pull us moany, tracksuited teenagers through what seemed like endless reams of bloody Carol Ann Duffy.

The other was her endearing love of what she freely admitted was "depressing literature". We didn't have to study any Sylvia Plath poetry for our course, nor Wuthering Heights, yet those names stick in the mind when thinking back simply because of her self-confessed passion for them.

Terminal illness changes the context of everything in life, big and small. Those two small memories have certainly felt different since Lindy became one of the 5,000 people in the UK to be suffering from motor neurone Disease (MND).

She began developing symptoms of the condition – which involves the steady decline of the brain's ability to communicate with muscles in the body, resulting in the gradual loss of bodily functions and usually ending in breathing failure – just over two years ago.

First it affected the muscles in her tongue, then her mouth, neck and arms. It now means that not only can she not teach any more, but she can't eat or talk. With her mouth too weak to chew or swallow, she is fed through a tube into her stomach, and relies on a breathing ventilator at night.

For now, she still has use of her fingers and communicates by typing on her iPad mini, though missing the social aspect of chatting with friends and family is "almost unbearable," she tells me. "I now feel terrified of anyone trying to talk to me. It's like being a toddler."

Typing has, however, allowed her to self- publish her memoir, The Voice In My Head Is Perfect, a deeply moving but often brilliantly funny book recounting her experience of being diagnosed with MND and trying to cope with the inevitable, inexorable decline. With all profits going to the Motor Neurone Association, it is now also being recorded as an audiobook. And the process of writing it has provided at least some form of catharsis.

"I have always kept diaries and written stories, so when I was diagnosed with MND, writing about it seemed something I just had to do," she tells me. "At first I felt too depressed to write, but it has given my life meaning and purpose now that I am no longer able to teach. Although obviously it isn't really the book I ever imagined myself writing, as getting MND is not something the average person spends much time thinking about, seeing the finished book was an amazing experience."

Visiting her in her house in Enfield, north London, which she shares with her husband Gareth, two sons in their twenties, Robbie and Owen, and her loveable dog Scrappy, we laugh as we discuss schooldays and our class's creative writing trip to Wales – recalling how she a found an empty bottle of vodka under the sofa after my friend Tom and I smuggled in some booze for the group, bought from a local petrol station. But such memories are bittersweet.

Though she is in no physical pain, her condition is rarely comfortable. "I have to wear a collar to support my neck. One of the most distressing aspects of the disease for me is my uncontrollable drooling, and now my arms are so weak I am unable to wipe my own mouth thus having to have someone else to do this, which is humiliating. I imagine people looking at me thinking I must be mentally subnormal."

In time she will have to communicate through a computer detecting words through her blinking patterns, and she may only have months to live. "It all depends on how my respiratory muscles hold up," she writes. "I was told last May, after a lot of pushing, that I had about a year. But it depends on my health. If I get a chest infection it might kill me. I feel very afraid of the future so I try and live from week to week."

Remembering the fountain of enthusiasm that once sprung from her lips in those lessons has therefore become hard to take, for her and others, since it has been corked up inside a willing mind but a failing body. As for her love of "sadcore" writing, her temptation is to wonder if it was some kind of curse, as she moves the search for poetic justice that informs the reading of many books to an examination of her own life.

Along with writing to a prisoner on death row, thoughts of her grandma, "Mad Mary", having a lobotomy in the 1960s, and the trauma of a false accusation of assault made against her by a pupil in 2005, "an unhealthy interest in books about death and suicide" is among a list of possible "bad karma" triggers she drew up in vain hope of trying to explain or justify what was happening to her. "I found it very painful going over reasons for why I might have got MND, as no one knows what causes it," she writes. "You keep thinking: why me?"

The lack of medical understanding of what causes motor neurone disease indicates the extent of the challenge still ahead in developing better treatments, let alone a cure. There is currently only one drug for the condition – and that extends lifespans by just three to six months. What makes things worse for sufferers is the lack of knowledge about the disease and its severity among people they encounter – some people naively attempted to reassure Lindy she would live to be a grandmother, not realising how quickly MND usually ends a life.

Stephen Hawking's appearance at the opening ceremony of the Paralympic Games last summer further cemented his position as what Dr Brian Dickie, director of research development at the MND Association, describes as "the best and the worst example of motor neurone disease". "Here we have this brilliant mind trapped inside a body that isn't working, which is the best example, but on the other hand as far as we know he holds the British record for survival," he explains. Unfortunately, Hawking's case really can be classed as unique. "He's lived with his disease for more than 40 years. That just isn't the normal reality of this disease, but it's often how the public perceive MND – they don't think of it as being rapidly progressive, relentless and terminal."

But it is not only the public who lack awareness. Farah Nazeer, director of external affairs at the MND Association, says many in the health and care services are equally ill-informed due to the relatively rare number of cases, meaning diagnosis can be delayed and palliative care can be painfully slow in being arranged – a particularly bad situation given that half of sufferers die within 14 months.

Ms Nazeer says the problem is compounded by the National Institute for Clinical Excellence's "appalling" lack of any official guidance on the disease for GPs. Indeed, Lindy's book comes at an important juncture for sufferers: a parliamentary audit into what services primary care trusts are commissioning for the disease will be published, and Ms Nazeer warns that the results will be "shocking".

It takes around 18 different professionals to provide the various aspects of care needed for an MND sufferer, but in many places these services cannot be obtained or are not co-ordinated in an effective way. "It's like being doubly discriminated against," she says. "You've not only got this condition but you've got one that the health service just isn't able to respond to or respond to quickly enough."

This is one respect in which Lindy can consider herself lucky, saying that her care from the NHS and the North London Hospice has been excellent. Nevertheless, she feels a "burning anger" at how MND is largely ignored compared with similar neurological conditions such as MS and Parkinson's.

Hopefully, her book might help address that for the benefit of future sufferers. As for Lindy, there is still the writing, as she slips into dreams of being her hero, Emily Bronte, "roaming the moors full of intensity, passion and suffering".

Lindy Jones's book 'The Voice In My Head Is Perfect' is available to buy from lindyjones.co.uk. For more information on MND, visit mndassociation.org

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