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BarryG

Extremely helpful member
Joined
Nov 19, 2008
Messages
3,000
Diagnosis
02/2008
Country
CA
State
Alberta
City
Hinton
Well, I had a really not so much fun experience last night, I was sitting in my chair watching tv when I felt the need to get rid of some of what I call "throat snot", that thick, sticky, gooey saliva that defies all remedies and tools.

So off I go the the bathroom sink and try to wash it out with water and drag it out with my toothbrush. No luck, still there. Next to the suction machine, my ultimate weapon of goo extraction. So I am washing and suctioning and the suction wand latches onto a large blob and I start to gag. And with gagging comes puking and the whole thing escalates from being an uncomfortable annoyance to a serious problem where I am vomiting and cant get a breath. There I am barfing and struggling for a breath and making all kinds of horrible whooping noises and Beth comes running in but there isn't much that she can do except catch me if I fall over. I now know what they mean when they talk about aspirating vomit, not that I did but it was very close.

After that I went to bed propped up and slept well and I feel good this morning but it was a really scary episode that I hope I never have to go through again.

One thing that I have learned from it is that I need to teach Beth to use the suction machine. Also I am going enquire about a cough assist machine, maybe that might help if it ever happens again. Any other suggestions would be appreciated cause like CJ says "bulbar ALS sucks".
 
I am very glad you feel better this morning!
WOW, what a horrible experience.

Here is hoping it never happens again!
The cough assist sounds like a good idea.

Take care!
 
Barry, so sorry to hear about your lousy evening! At least Beth was there! Would of been much scarier without her. Here's hoping that you never experience that again!
Colleen
 
YIKES! What a "putrid" experience and toooo scary! Definately teach Beth how to use the suction! Do you have the long hard attachment that is somewhat the size of a toothbrush with a hole and the soft little tube that is used for trach suctioning? You need both kinds. If you can, breathing in through your nose when you are coughing and choking can get in a little O2 and will sometimes stop the choking if that makes any sense. Glad that you are feeling ok today :]
 
Barry, that is scary and I hope it never happens ever again! Are you taking anything to suppress the secretions like Atropine drops or perhaps the Scopolamine patch? My dad now has both. We give him the drops as needed and he now wears the patch. My dad has been through the ringer when it comes to secretions and goo so he totally sympathizes with you. Take good care of yourself, Friend and please thank Beth for everything she does.

BULBAR ALS REALLY SUCKS! I hate it.
 
Barry ... I have had those choking episodes where you cannot get air, and I'm vomiting out my nose! My caregiver tried the Heimlich maneuver on me once (it doesn't work when your air passages are filled with glue) before calling 911. I ended up in the ER, even tho I was over the choking, because my b/p was so high. (Normally it's on the low side.)

I get so weak while it's going on, I nearly collapse and it takes me a long time to recover. I have moved the suction machine to the bedroom, and am using the cough assist 3 times a day as maintenence. I thought it was only for emergencies, but the RT says no ... try to keep your lungs cleared out.

I've also (alas) given up everything by mouth, including chocolate and yogurt for pills. If a pill can't go in the tube, it doesn't go.

The throat slime always builds up in the afternoon and evening, and taking in too much supplement makes it worse. I've been regurgitating feedings recently ... into the tummy, out of the mouth if I bend forward ... with lots of gagging and choking. And it tastes like hell. (Something for you to look forward to.) So I cut back to 3/4 cup of supplement at night and ease off on the water. Part of this problem seems to be that my stomach empties very slowly now. Don't know if that's true, but it seems to contribute to the throat slime.

Get the cough assist. It doesn't produce a cough for me ... sounds more like I'm gargling ... but it helps clear the airway better than the suction device. Using both seems to help.

Glad you survived it! It is a scary, scary experience. The worst thing I've encountered so far with ALS.
 
Barry I am so sorry to hear you had such a horrible episode. My Dad use to have these as well. It took so much out of him, he would need a nap to recover. Mom would say she felt so helpless when Dad had an episode. If your wife can learn to suction she can help you avoid aspirating during a crisis, plus it gives her something "to do" if that makes any sense. The cough assist for maintenance could help with the build up as well.

There are 2 kinds of suctioning. The suction catheter that Dad had at home was too big to get deep where the suction was needed. The kind that was done at the hospital (nasotracheal suction) was much more aggressive but also took alot out of him and I am not sure it can be done at home. Towards the end when Dad was really having trouble and in the hospital being treated for pneumonia, we discussed a trach instead of the N/T suctioning with the docs. In order to put a trach in you have to have surgery and he would have needed to be ventilated for the procedure. There was a small likelihood that he would have come off of the ventilator so Dad declined the tracheotomy.

I say this because if you are considering a trach at some point, maybe like the feeding tube it might be better sooner rather than later to help manage secretions and protect the airway even if you did not want the vent. I mention this with the best of intentions as I keep replaying in my mind the "what if we had did this or that" for Dad and thought this might be something others could consider.

Dana
 
Thanks everyone for the kind words, encouragement and suggestions.

Kay Marie, my suction hose has a long, tapered attachment that has a hole in the side and it works ok and even allows me to suction my nose out but I'll see what else is in the bag.

Rosella, I haven't been taking anything for the saliva and associated goo but the patch was suggested to me at my last clinic visit so I will talk to them more about that. Sorry that your dad has had to go through this horrible stuff, it is bad enough for me as someone who can still get around and look after myself (sort of) so I can only imagine what it is like for him and your mom and you.

Beth, I agree, that it is the scariest thing that I've been through too. I wish it made me feel better to know that others have had vomit coming out of their nose too but I really wish none of us had to have that fun. I am still able to drink my morning smoothie but that is it by mouth other than water out of the tap. I have pretty much given up trying to eat anything solid cause "if it don't flow, it won't go" so all of my wife's great cooking just smells good to me. Sorry about the chocolate, that really does hurt. Christmas will be hard without all the good food but I'm going to make an eggnog smoothie and enjoy that (with Captain Morgan).

Dana, thanks, I will be thinking of a trache sometime but because my breathing is still at 87% hopefully it is a ways off for me. I know what you are saying about being proactive and doing it while it is easier but because I am still walking and breathing well it is hard for me to accept. I will keep looking at what I have for suctioning tool and managing the goo. BTW when I asked the ALS Alberta rep about a trache and vent she said "Oh you don't want that, it is too expensive and too hard to get someone to look after you"

Thanks Joel and Colleen, I am going to be careful, no more barfing for me!
 
Barry you have an amazing spirit! Good for you for making an eggnog smoothie to celebrate the holidays. Your family is SO LUCKY to have you... and so are we here on the forum. It breaks my heart that you experienced something so scary. Thank you for being careful. I'm so glad that your FVC is 87%. That is very good!

Big hugs to you.
Rosella
 
well barry, one good thing is i guess you pretty much cleared all the gunk out for awhile, right? take care.....
 
One thing I found interesting in the midst of my panic was that the vomit was only coming out of my left nostril. We couldn't make this stuff up if we tried!
 
Barry, what an episode! I appreciate you sharing it!

Zaphoon
 
You would think "they" would've come up with something effective by now to control the goo problem.

Glad you are OK!
 
Someone on the PLM Forum suggested this. A German company makes a product that is also distributed in the USA. It is called ACC akut 600mg. I visited the Healthierlung.com website and got the number and my wife called and talked to a really nice lady named Savannah, who explained the product and we ordered it for me to try. I have been on it for about two weeks and it works great. Not only does it help tremendously with the mucous and pleghm it helps with swallowing. Savannah told Mitzi that they have a lot of PALS using it and everybody loves it.
It comes in a large pill that you dissolve in water or juice up to three tiimes daily (I use it twice daily)
This works for me and I will now stay on it. I also have a Cough Assist machine and this helps loosen the mucous so it comes up easily and you can swallow it.
Gordon
 
This sucks big time. I have episodes where I feel like I am choking and as they progress and I lose control, I get laryangospasms where the vocal chords completely shut over the wind pipe. I have learned to take small breaths through my nose and put my chin to my chest and swallow, but it doesn't always work right away. It is very hard to control panic when you can't breathe! It usually starts with a tickle in my throat and I feel the panic well up. If I catch it in time I can control it, but sometimes I can't and panic overtakes me. The way to control it all is to calm down, take small breaths through the nose and chin to chest and swallow. But if you can't breathe through your nose, it is hell. I fully agree Bulbar sucks!
NancyS
 
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