Help xxxx Tracheotomy: My Mum, my nephew and his... - Ataxia UK

Ataxia UK

4,141 members4,725 posts

Help xxxx Tracheotomy

HazelCarr123 profile image
2 Replies

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.

Written by
HazelCarr123 profile image
HazelCarr123
To view profiles and participate in discussions please or .
Read more about...
2 Replies
Angelcake1 profile image
Angelcake1

Hi

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.

HazelCarr123 profile image
HazelCarr123 in reply toAngelcake1

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.

Not what you're looking for?

You may also like...

SCA17- Why is life so cruel sometimes

My mum, aged 46 has just been diagnosed with SCA17 after two long years of going back and forth to...

Can anyone please help me?

My mum was diagnosed last yr with SCA17, after 6yrs previously Mistakingly diagnosed with MSA. We...
vix86 profile image

Disabled parking refused

My sister has been diagnosed with cerebellum attaxia. She is so wobbly she is unable to go out...
rosalinda profile image

Regarding ataxia and memory

Does any one her with ataxia suffer from forgetfulness or memory loss? My mum and big sister have...
Junie1984 profile image

What can my 'ataxian' friend do about her choking problem

My 'Ataxian' friend has recently experienced very frightening choking to the point that she thought...
tedjohnson profile image

Moderation team

See all
HarryB profile image
HarryBAdministrator
VE93 profile image
VE93Administrator
WendyBom profile image
WendyBomModerator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.