There is really no good news.
There are four different types of the disease and Stephen Hawking has one of them. He is being kept alive by God knows what - it just shows how unpredictable the disease is.
My stepmother, Anne, has Progressive Bulbar Palsey (PBP). The first signs were that she was slurring her speech. My sister in law (more on her later) phoned me to say she thought she had a drinking problem. I thought that perhaps she wore false teeth and they were giving her some gip. She also started to have problems swallowing and weirdly, found that she was struggling to get out of the swimming pool, but couldn't quite work out why.
After tests, tests and more tests, she was diagnosed with MND. Prognosis: three year. How do you come to terms with that? Still in your 60s, recently retired to enjoy a well earned rest in life, fit and, until now, well. It beggars belief. Whatever that means.
So after talk of Dignitas my Dad and Anne started the long road of getting on with life. Now about 18 months from diagnosis, Anne's tongue function has pretty much given up the ghost. She can't swallow much at all, and that includes her own saliva, which constantly drips from her lips. She chokes regularly on food and spittle. She cannot talk at all. She has had a PEG operation - has had a tube put into her stomach through her belly button - which she can fix to bags of nutrients which keep her going. She uses a ventilator at night to help her breathe. She can just about still walk with a stick, but she clings onto my Dad as her balance is terrible. About 50 metres is her lot. Just keeping alive is exhausting, and she sleeps during the day,
It will just get worse.
She, amazingly, still laughs with my Dad about the things we all laugh about in life. She uses an iPad to talk, Stephen Hawking stylee, and is the faster 'dibber' in the west. (The dibber is the pen thing you use with the iPad. Not sure if this is a real word or if I've just made it up.) She has lost weight and looks ill, but she still has her hair done every week, wears full make up, dresses beautifully - and she and my Dad play bridge three times a week.
The physical symptoms are sodding awful, but the onset is slow, and Anne seems to cope with each new challenge thrown at her. But it's not just the physical stuff that she is expected to overcome.
A family occasionMy Dad and Anne met up with my brother, his wife and their two children for a meal some months back. There was no one else in the restaurant. Anne started to choke. My Dad, used to this, carried on regardless, talking about someorother. Anne continues to choke. My brother and his wife start to get concerned. My niece starts to cry. My nephew runs to the toilet. Anne's colour changes. My Dad carries on talking.
Eventually Anne recovers and conversation returns to the table. My Dad doesn't refer to it, appears not to have noticed.
My brother and his wife, instead of feeling compassion for Anne, choose to feel upset that their children have been put through this episode. After a few days discussing it, my brother phones my Dad and tells him that Anne 'frightened the children' and the whole episode was 'horrific', so they did not want to eat a meal with her again.
My Dad, so upset by this, temporarily loses his powers of tact and logic, and instead tells Anne exactly what was said.
Can you imagine how absolutely fucking shit this must have been? My brother might as well have spat in Anne's face. She not only has MND, and has to cope with all that entails, but is now an object that frightens children. She is horrific. A monster.
My brother, an Oxford graduate with two houses, a great job and supposedly a perfect family, is a twat. Anne is a wonderful woman, has been more of a mother to me than my own mother, is kind and generous to my boys, and is going through a world of shit. And my brother, the selfish tit, has in a moment shown that he lacks the humanity of a dung beetle. I am crying as I write this, because I am ashamed of him.
I don't know where our family goes from here. My brother has realised his mistake and, although he's not actually apologised, is phoning my Dad regularly. Which is something. But Anne never wants to see him or his family again.
The sad thing is that 'never' will probably be less than a year.
To find out more about motor neurone disease, visit the excellent website of the MND Association: http://www.mndassociation.org/
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