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Hi Alex , it's been 2 weeks and so far so good, the mucus in my throat and chest has been much thinner. My chest isn't perfect but I've been able to clear my throat in one or two minutes which is a vast improvement. Re: acetylcysteine I suspect they wanted to see if saline worked first then upgrade if it doesn't. I've been on oxybutin aka ditropan for my bladder for 3 years so I don't personally believe it's affecting the mucus.
So for now I'm pleased with how the humidifier etc is working out

Well, I am glad to hear that. So the saline solution worked. I tried acetyl cysteine again a few days ago but it didn't work. I may try the saline solution. Thanks twitchykitty,
Alex
 
Alex, i admire your approach, management of this.

my paralysis progressed far enough to make me bedridden since October. i experience physical pain often, mostly from old injuries and being unable to move i can not alleviate the pain.
but for me the choking on the phlegm, or gunk is the hardest part of this. these are newer issues for me, and my bulbar issues are not as tough as yours and many others.
i do not know much about remedies for this. i have been trying papaya chewable enzymes with some success. i keep it under my tongue, and let it melt, so i dont choke on it. mucinex seems to help me too, but my bulbar issue are not advanced. a suction machine has brought relief. i also had a yeast infection in my mouth, taking medicine for that improved my swallowing. i have read this is common with pals.

u knew all this already. i just wanted to say i am inspired how u r handling this.

take care,

pat
 
Pat,
Thanks for sharing your experience with us.
Do you have a hospital bed? (I would assume you do)
I wonder if you typically have your face looking upwards. In my experience, when lie in bed sideways, there is less chance of choking, although the secretions can accumulate in my throat.
Also, having my head sideways, when I sleep the saliva just leaks out of my mouth on a towel that I place under my head.
 
we have split twin adjustable beds, feet and head of each bed move independently. pushed together they make a king bed. not good for a hoyer lift, no room underneath. we are having a ceiling lift installed, possibly soon.

i have enough atrophy, that i can only be on my side for 30 minutes. i am bony now, not much padding. mattress overlays recently provided much relief to my bones and joints, thanks to the info on this site.

afternoon,

pat
 
Hi Bob, How are you doing? I tried to send you a private message but the drop-down menu does not show that option for you.
 
I have a question (that probably not even doctors can answer). My secretions, as well as those of some other forum members have some white stuff in them that seems to be dead cells. Regardless of what it is, we can say that it is some kind of solid "junk" that needs to be removed from the body. Now, if we find some way to "successfully" reduce secretions, couldn't this white stuff get accumulated in the throat and form thick lumps that could eventually choke us? I understand we could still do some washing with salty water but that might not always be effective. Any ideas?
 
Alex and others,

Botox; As the Dr's mentioned... The first round was not tremendously successful. Was probably semi-effective for several weeks, but then seemed to dissipate quickly. To compensate I went back to glycopyrrolate (1MG 2x day), but I had to increase to 3x day. I go back for the second round in about a month. If that doesn't hold up, I don't imagine I'll continue. The injections a somewhat painful. Have your CALS hand to squeeze.

I'm also using a nebulizer at least twice a day with Ipratropium Bromide. Leaves me with an incredibly dry mouth, but I'll take that over the bathroom every two to three hours for twenty or thirty minutes a visit. That was getting really exhaustive, especially over a twenty four hour day. Not so bad now.

Yes, it sounds as if you are more advanced than myself. I'm not quite a year since dx, but slurring started a year fourteen or fifteen months ago.

White goop... All of my extractions have been of a thick white composition. I presume it's predominately mucus. It seems to me that both the nebulizer and the script only seem in effect for about six hours each. So I try to take both within an hour of each other. I've noticed that if I get off schedule with them, that my mouth starts to pool with one or the other (mucus or Sylvia). Based on whichever I took longer ago, dictates what to take now. Usually, I don't fall asleep till the wee hours, but when I do I sleep in for the morning. Often with a very dry mouth (sleeping with open mouth), but I let that ride for as many hours as I can before heading to the bathroom for the first extraction of the day. Of which visits are currently down to two, maybe three, a day. As a result I find myself with a bit more energy in the day.

Just several days ago I found a small-ish ball of white goop stuck to the end of the suction wand. First time for that. No others so far, but I'm on the look out!!!

Mobility is pretty good. Mornings being the worst. Really unstable, but I can get from here to there with the cane and hanging on to walls and furniture. The rest of the day I cruise, by comparison, around the house like I own it... Oh wait, I do. However, if we do go out, hospital or maybe a quick trip to shop, I cane or snag one of those electric scooters, usually both. For the most part though... I guess you have to say that I'm 'couch ridden'. And then, as I'm often up till all hours, I frequently end up sleeping there/here.

BTW... You are now a group of one on my friend list. Your message did get through, I just hadn't been on site for a few, maybe several, days. Keeping track of time these days doesn't seem a priority.

I think I've touched base on most points. Talk atcha later,
Bob
 
Hi Bob, thanks for keeping us posted about your condition and the effect of Botox. I am in a tough situation now. My lung function has been reduced a lot, my secretions make it harder to breath and now I have a "dropped head syndrome" and I my arms are semi-paralyzed. I have been told that I need a tracheostomy. I think I am not going to have it done it as in my case I my quality of life most likely would not be acceptable.
I think I said before that my secretions got thinner and less abundant as soon as I went to bed, but now even they are reduced during the night, they remain thick. I am trying to hydrate myself more as this change happened as the weather was getting hotter.
I have also added you to my friends list. I hope the next round of Botox works better for you. Good luck Bob.
Alex
 
Alex do you use a brace to keep your head upright?
 
Hi pat, you can get bed raisers to go under your bed so you can still use your hoist, we are getting some next week to use in our new house. Regards Gem
 
Hi pat, you can get bed raisers to go under your bed so you can still use your hoist, we are getting some next week to use in our new house. Regards Gem

Thank u, we got a used ceiling lift donated... Will have some friends install it... thank u.

Want to avoid a floor lift ( Hoyer ), if possible, they are bulky / clumsy...

Thank u though, you're a Gem.

Morning,

pat
 
Alex do you use a brace to keep your head upright?

My neck became an issue the last few months... there are threads on this site, with info about neck braces.

my biggest problem has been it falling backwards.

We tried a few collars, all can be bought online. The ones we got were all around $40.

The best collar for me has been a Philadelphia Collar, about $18 on Ebay, $30 with shipping.

keep your head up Kid,

pat
 
Oh yes, I remember your invention now, I loved that one!
 
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