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cervus

Senior member
Joined
Mar 18, 2011
Messages
935
Reason
Lost a loved one
Diagnosis
11/2010
Country
CA
State
AB
City
Leduc County
My husband Bob has been using a BiPap since April and has tolerated it quite well so far. We've had a few unusual ALS related events recently - those full body spasms I mentioned a few weeks ago followed by shallow breathing for the night, and then we were trying to transfer him from the toilet to his wheelchair but he just was too weak to help at all with my daughter and I helping him with a transfer belt and for safety sake, had to let him drop slowly to the floor so we could figure out a way to move him to the track in our bathroom. He didn't fall. Anyway, just after he was on the floor he passed out for a little while - maybe 30-40 seconds. His eyes were open but was unresponsive. Scary but he came to and was fine after that. Then last week we had to perform the Heimlich on him - flook choking. Now, for the last three days he's been waking up with headaches and is a bit more tired during the day. Of course it's the weekend - we gave the headache thing a couple of days to see if it was a random headache so we'll have to wait till Monday to contact the ALS Clinic. I guess what I'm wondering is if it's a BiPap adjustment thing for expiratory flow OR? Any advice or tips based on experience? Thanks again! Yasmin
 
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I use a sit to stand for transfering to toilet. I use a cough assist to clear lungs. I use a bipap at night and before transfering to toilet for energy. I also use the bipap after I eat to help as I feel tired after I eat. Hope this helps.:razz:
 
He should also have CO2 levels checked to make sure they are not too high.
 
Hi

It's never normal for someone to pass out. Did someone call the doctor and report that? Headaches combined with passing out should always be evaluated--or at least warrant an after-hours call to the doctor.


Good luck!
 
Thank you for your comments. Yes, after the passing out episode, we phoned the ALS Clinic and have been in touch with them. One of the team members is coming out on Monday or Tuesday to do a SNIF but I'm sure, once I report the headaches, they will organize a visit from our RT. Also since then we have switched from transferring on to the toilet to transferring, via track from power chair to commode. Much simpler and safer. I don't like the fact that Bob is getting headaches and then today slept for 3 hours this p.m., new for him. He usually takes a pm nap but for an hour or so. I do see some changes and although I've read enough on ALS to know that these things happen as this awful disease progresses, it's hard to accept when things change. Adapation to different day to day functions - from walking to wheelchair, talking to speech software, eating to mostly tube feeding, etc. are one thing. When noticeable respiratory issues arise, that's another to me, although speech to Bob was the worst out of all, until now of course. What a dreadful disease. Thanks for your support though. I hope you two are doing as well as can be. We've learned to completely enjoy each day together, as physically and emotionally demanding as they can be sometimes. I'm blessed and honored to be able to look after Bob and to have him here each day.
 
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HI

Remember, too, that not everything that can happen to one with ALS is ALS related. Absence seizures, for instance, can present as you described--eyes open, but not really 'there'.

I think when we are diagnosed with a serious disease--we just sort of assume nothing else could possibly go on --but unfortunately, that is just not the case :(

Hope you get it sorted out!
 
Yes, I realize sometimes it's difficult to differentiate between serious illness symptoms and other symptoms. We've been through this before - Bob had leukemia with a successful stem cell transplant in 2003 and then in 2007 he developed a rare type of lymphoma called Waldenstrom's - incurable but treatable. After chemo and anti-bodies, we've managed to keep that at bay and now ALS! I will let you know how things develop after we've been in touch with the ALS team, RT, etc. Thanks for your insight. Take care..
 
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