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kentmnd
28th December 2011, 00:25
My mother sadly passed away last night in farnborough hospital. She was 70 years old and I am her only son. I thought it might be helpful for other carers and sufferers to hear about our experience.

Around two years ago, mum became incapable of walking up a small hill. We all thought she was unfit and needed to take more exercise! Then in August last year she dropped her 1-year old granddaughter and fell over for no apparent reason. She had previously fallen over irregularly over the last 8 years, which was worrying but easily ignored. However, we insisted that she get fully checked out. She was provisionally diagnosed with mnd in October 2010, which was confirmed in dec 2010.

The initial prognosis is frankly terrifying, but my wife and I took the view that mum has always been an adventurer and we managed to take her on five holidays this year. These were not grand affairs and often we'd only go away for 3 days to the isle of Wight but some of my favourite memories with mum came from these trips. In August we took her to France for 10 days and she even managed to swim a bit on two days. Only two months ago, mum took great pleasure going round the galleries and museums in st Ives.

However, mnd takes no prisoners, in particular bulbar mnd. With the colder weather, mum caught several colds and was on antibiotics for the last four weeks. Her mobility deteriorated but she could still walk with her walker until two days ago. But the biggest psychological problem was losing her voice. From early October onwards she could no longer communicate effectively with her grandchildren and the anti-depressants no longer seemed to have any effect. We bought her an iPad with proloquo2go software in addition to her light writer, but she never used either device.

The strange thing about mnd is that your mind stays sharp right up until the end. Six hours before she died, mum asked me (with great difficulty and much interpretation) what my friend whom she hadnt seen for twenty years did for a living. Ultimately I think it was mnd which killed her, although the pneumonia hastened the descent. Over the last four days of her life, mum went from being able to speak every word(slowly) to hardly being able to speak at all. Once mnd paralysed her tongue, it seemed to take hold of her ribcage and slowly she stopped breathing.

One small piece of advice: make sure you get a peg feeding tube fitted way before you think you need one. Mum missed her window of opportunity to get a tube fitted and it might have prevented her from catching aspirated pneumonia caused by inhaling food or other foreign bodies.

I'd like to thank Kent mnd association for all their support and kindness over the last year. Good luck to everyone who has been touched by this terrible disease.

Bels
28th December 2011, 11:57
Kentmnd,

I am very sorry for your loss, particulary at this time of year. Thank you for taking the time to share yours and your Mums experience.

Bels

MikeFD
30th December 2011, 10:17
Sincere condolences from everyone here.

Mike.

luce
31st December 2011, 09:22
Thinking of you and your family, so sorry to hear your news. Cherish those nice memories you have of times shared
lucy

kentmnd
10th January 2012, 00:04
Pleased to say that we raised over 1'000 Gbp in the collection for the mnd association at mum's funeral on Friday. Thank you to everyone who was so generous.

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