Hi Everyone~
The Dr. says my Ataxia has affected my diaphragm muscles and I only have 40% of my lung capacity. I use a ventilator machine (called a trilogy machine) and oxygen at night when I sleep. Does anyone have trouble with their breathing or lungs??
Thanks for replies~
Yes I do have trouble breathing most of the time it does nt take much for me to get breathless. I put mine down to trying to hard to do things. Yet times I get out of breath doing just nipping to the loo and back.
Hi Anthony,
I often have to stop mid sentence and take a breath. If I laugh hard, I begin to wheeze on intake breath and start to cough (still worth the laugh any day!)
I also get out of breath hobbling with my cane to the mailbox and back, and any other same type of activities. It doesn't take much.
I also use an oxygen machine every night.
It is frightening, but I do everything in my power to not let it get to me and to get on with it.
Hugs,
Robin
Robin Yule said:
Hi Anthony,
I often have to stop mid sentence and take a breath. If I laugh hard, I begin to wheeze on intake breath and start to cough (still worth the laugh any day!)
I also get out of breath hobbling with my cane to the mailbox and back, and any other same type of activities. It doesn't take much.
I also use an oxygen machine every night.
It is frightening, but I do everything in my power to not let it get to me and to get on with it.
Hugs,
Robin
cindy clark said:No, so far I don't have any trouble breathing , but sometimes chocking at the dinner table. I get an uncontrollable cough. I too , talk and walk like I'm drunk
Robin Yule said:Hi Anthony,
I often have to stop mid sentence and take a breath. If I laugh hard, I begin to wheeze on intake breath and start to cough (still worth the laugh any day!)
I also get out of breath hobbling with my cane to the mailbox and back, and any other same type of activities. It doesn't take much.
I also use an oxygen machine every night.
It is frightening, but I do everything in my power to not let it get to me and to get on with it.
Hugs,
Robin
yes, mostly at night. tHIS HAS AFFECTED MY SLEEP TERRIBLY
I do, especially first thing in the am when itt wakes me up.GP has done breath tests but can't find anything wrong.
Seems to be worse when I try to rolll over in bed on the left side. Everyone who has slept in our house says I make a dreadful noise when asleep.Luuckily I am a deep sleeper.
wish I was
I have some of the kind of breathing problems described above, particularly at night, but sometimes during the day. My ataxia doctor says this couldn’t possibly be related to my ataxia, but a 5 minute internet search shows that breathing problems can develop with ataxia, and I don’t know why else I would have breathing problems since I didn’t before I had ataxia. My type of ataxia is as yet undiagnosed (I have had it for about 2 years), but I am curious—for those of you with breathing problems, what specific type of ataxia do you have?
Hi, welcome🙂 Is it possible your breathing problems could be linked to Sleep Apnea🤔 This can be quite common with ataxia, it could be worth asking to be tested, and it’s treatable.
Thanks for the tip.I will look into that.
cindy, keep an eye on that choking and request to see a specialist. I had 2 weeks of pure choking. got discharged from the specialized clinic, blame more my incorrect breathing.they give you plenty of advice.some foods can set you off.I was eating soup andbread but had to eat pone thing at a time.it hasn’t returned since December 2018. knowing myself I’ll jinx it…
as I am new to this site, I have ataxia sca2. as I found it under general. it can be heart-angina, COPD, breathlessness…