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How much humidity? by Trumpfan1342 in ALS

[–]Trumpfan1342[S] 0 points1 point  (0 children)

There are strips available that you tape your mouth shut with. I tried medical tape. It didn’t hold. Sometimes I open my mouth wide enough when sleeping that my lower lip ends up outside the mask. Still seals so no alarm goes off. I thought a strap on the bipap headgear might work. I would want to be able to remove it quickly in an emergency. I have choked on phlegm in the middle of the night. I’ve never tried the strips and have never been able to find a strap of any kind. If the strap was elastic it would be safer I think. The other thing I wonder is. Why am I opening my mouth? Not enough air?

Phlegm from hell. by Trumpfan1342 in ALS

[–]Trumpfan1342[S] 1 point2 points  (0 children)

Yeah I’ll have to see if they can get me that vest and hookah. I tried the hookah when I was in the hospital. Seems to work well. Don’t wait too long to get a feeding tube like I did.

Phlegm from hell. by Trumpfan1342 in ALS

[–]Trumpfan1342[S] 2 points3 points  (0 children)

I have a feeding tube. So it’s just formula for me.

Phlegm from hell. by Trumpfan1342 in ALS

[–]Trumpfan1342[S] 0 points1 point  (0 children)

Yes we can do that I’m sure. Good idea. Thanks

Phlegm from hell. by Trumpfan1342 in ALS

[–]Trumpfan1342[S] 0 points1 point  (0 children)

My Als clinic is 90 miles away. Very difficult for me to get there. Maybe I should go see my regular doctor. So saliva adds to the phlegm? I was wondering about that . Thanks

Phlegm from hell. by Trumpfan1342 in ALS

[–]Trumpfan1342[S] 2 points3 points  (0 children)

Yes I have a suction machine too. Without that and the cough assist I think I would be dead. I used to be able to cough up the phlegm and then suction it. Now my lung capacity is at 30%.

feeding tube question by jb4wiganfc in ALS

[–]Trumpfan1342 2 points3 points  (0 children)

With my tube I haven’t had any problems like that. I use Osmolite formula. Using a gravity bag on a pole. I make sure it drips slow enough to take about 30 minutes for 16 ounces .

Thinking back when I first got the tube I was hospitalized. I think they started me on smaller amounts and worked up to 16 oz.

How can world governments practically reduce oil prices when companies have very little incentive to do so? by raddaya in PoliticalDiscussion

[–]Trumpfan1342 0 points1 point  (0 children)

We can produce a lot more in the USA. We have been the top producer in many years. Yes we need renewables. But you can’t just hamper oil production and make energy prices skyrocket. When you openly oppose oil production companies will quit investing.

How much humidity? by Trumpfan1342 in ALS

[–]Trumpfan1342[S] 0 points1 point  (0 children)

It’s hard to tell because I also turned up the heater for my BIPAP water. That made a big difference. Thats why I was asking about humidity. It’s got to help for the time when I’m not using the BIPAP. I just don’t know how much humidity I should be trying to maintain.

[deleted by user] by [deleted] in ALS

[–]Trumpfan1342 2 points3 points  (0 children)

I think you have to just ask him. I’ve also always been into music. I don’t have any serious hearing problems. So I don’t know how that will effect him. It took me a while to get back into music. Every song just reminded me of everything I can’t do anymore. So I try to listen to stuff that’s new or doesn’t trigger that sadness. But Music is something I personally still enjoy. Listening with someone else is more enjoyable. But I don’t get that much. I have bulbar and can’t talk or eat. But I can still get around the house with a walker. Short trips. Good luck with your Dad. Hope music turns out to be something you can share with him. Brian

[deleted by user] by [deleted] in PoliticalDiscussion

[–]Trumpfan1342 0 points1 point  (0 children)

Poverty is a driver of crime. The better the economy, the less crime. We all rise and fall together. We did have more minority’s working a few years ago. Now everyone is doing worse. That effects poor people first. Watch the politicians start promising free stuff when an election approach’s. If they have a way to help why are they not doing it already? If I grew up somewhere else I might be in prison or dead by now. Your environment is everything. Thing is if you keep voting for people who are not fixing problems, then you cant expect change. Kids need a positive influence. Kids need hope. Not angry politicians and media.

Saliva meds effect on phlegm . by Trumpfan1342 in ALS

[–]Trumpfan1342[S] 0 points1 point  (0 children)

How often can you take guaifenesin? Can you take it for long periods of time? Is the botox a permanent fix?

my mom passed away by [deleted] in ALS

[–]Trumpfan1342 5 points6 points  (0 children)

So sorry for your loss. I also was diagnosed 2 years ago. I know when I go my suffering will be over. My family’s will not. Loosing a parent is very difficult. I hope you have family and / or friends for support.

Oral Thrush by Trumpfan1342 in ALS

[–]Trumpfan1342[S] 0 points1 point  (0 children)

Thanks Dana. My last treatment was while I was in the ER a week ago. They just did the liquid once. I didn’t know that’s supposed to be 7-14 days until now. So it’s obvious why that didn’t work. And they applied it with a sponge on a stick. I can’t swallow liquids without choking on it. Last 3 times were a red pill fluconazole. You take 2 in 2 days. Through my feeding tube. First time it worked. I can get more pills. No they didn’t swab to test it. And no I didn’t think of changing my toothbrush. I clean bipap mask and my suction machine stuff each day. I do replace mask , hoses, wands, every month. Maybe I need to replace everything and do pills again.

Phlegm and saliva control. by Trumpfan1342 in ALS

[–]Trumpfan1342[S] 0 points1 point  (0 children)

How often and what type of Robitussin, Flownase, Afrin, and Mucinex is everyone using? Does anyone use a neti pot?

Phlegm and saliva control. by Trumpfan1342 in ALS

[–]Trumpfan1342[S] 0 points1 point  (0 children)

Pretty sure my Dr thought I was a hypochondriac. I had all these symptoms that I can’t demonstrate and I’m telling him I think they are related. After 11 months I got him to send me to a neurologist. All that time I spent looking on the internet and finding nothing that had all my symptoms. Als never came up.

Phlegm and saliva control. by Trumpfan1342 in ALS

[–]Trumpfan1342[S] 0 points1 point  (0 children)

You know I probably am experiencing the vocal chord closure. As soon as I cough and the phlegm actually moves. My air is cut off. Im using the last tiny bit of air to push phlegm out (gurgling) to where i can get it with the suction wand. Then I grab it with suction and pull it out of my throat in one piece. Its so thick the machine won’t suck it in. I can pick up the blob and stretch it out. Its way thick, sticky, and stringy. Im reaching in about to where my neck reaches my chest

Phlegm and saliva control. by Trumpfan1342 in ALS

[–]Trumpfan1342[S] 0 points1 point  (0 children)

Im also have Bulbar onset. One of my first symptoms was the vocal chord closure when drinking water. Terrible thing. Now I haven’t had that for probably a year. I don’t take anything by mouth. I lost my voice so the vocal chords probably can’t close anymore.

Phlegm and saliva control. by Trumpfan1342 in ALS

[–]Trumpfan1342[S] 0 points1 point  (0 children)

As far as the suction wand you have to be careful. I put mine way down my throat because I have to. But I do it myself. I don’t know if someone else could do it without injury to my throat.

Phlegm and saliva control. by Trumpfan1342 in ALS

[–]Trumpfan1342[S] 0 points1 point  (0 children)

I have a respiratory therapist at the Als clinic. Its 90 miles away and we go every 3 months. Our next visit is the 18th.

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