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Ataxia UK
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Help xxxx Tracheotomy

My Mum, my nephew and his Mum and me all have Fred's Ataxia. I do loads of exercise and go out and think positive so does my Nephew. My Mum and sister did/do nothing and my Mum died after having a tracheotomy (for 7 years) and dying with choking. My sister (who is a year older and can not talk hardly and uses a wheelchair) was taken into hospital xmas day as she has lost 2 1/2 stone not eating as she is now choking. I need to know is this part of the illness and can I do something to help/stop this.

2 Replies


My husband has a PEG J, fed straight into his jejunum to try and stop the feed from coming up and choking him. Originally it was into his stomach but he still aspirated on his feed. He has been in hospital quite a few times with aspiration pneumonia. Is this something your sister has consider having fitted ?

All the best to you and your family, it's heart breaking to see.


Thank you so much Angel, I thought about that. My Mum said when she woke up with a trachi she wished she had died as it was horrible she said.


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