Had A Scary Moment - Gasping for air, loss of breath with ALS

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Distinguished member
Aug 10, 2005
Hello ALS Family,

Well can you believe that it has been more then a month that dad moved in. Seems like yesterday.

In any case most things have normalized. Dad is now comfortable and has his surroundings pretty much in place so he is doing well.

However, last night I had the scare of my life but remained pretty calm. I think I was mad more then anything. Dad had a really busy day yesterday and was unable to really drink or eay anything. This coming from someone that must always eat and drink. He took his rilutek at 6pm and he always feels the need to not only not eat for an hour but also not drink. This is no good and I tell him that he must drink more water or whatever. Some days he listens and others he does not. In any case we got into a fight sort of silly actually. I was having a bad day. I told him that his breath was yucky cause he was not drinking and he got mad gulped a big mouth full of the water while driving not realizing that this water had been in this spot for days. He swished it around his mouth and then got the taste and the warmth he was grossed out and spit it out. The scary thing was all this mess caused him to what I say no idea. He gasped for air a few times all while pulling over, spitting out water, he was actally trying to catch his breath. No caughing until he cought his breath. Then he was fine we went home and he ate a man sized meal and dessert with no problem.

I can't get the image out of my head and am not understaning why he was was gasping for air like that?

Has this happend to anyone and what have you done or what should we do. This happend only once and it was under very strange circumstances I know if I tasted what he tasted I would have spit it out. Gasp for air in that manner I would not have done and I am very scared and so was he.

Please HELP
I've done the gasping for air thing quite a bit.
If I rush to swallow then it sets off that reflex. For me, I find that candy will do it, especially chocolate. I don't know why but sometimes it starts that reflex...really freaks my wife out!

I am so sorry you went through that moment of fear. It sounds very frightening. Our dietician said that sometimes they worry more about the liquids going down than properly. This can happen with als. It is possible though that this was a one time thing and it happened due to the circumstances. He might have swallowed the wrong way, we all can have this happen sometimes. I have had this happen myself if I eat sweets and it catches my breath, I have to take a drink right away. I understand how you feel about trying to get him to drink more water, it is very important. I do not believe there is one person that would not have moments when things do no go right and feeling frustrated happens to all of us. I sometimes will sit and just cry because I think I am trying so hard to do everything right and my loved one will feel irritated at times. You are human and you need time for you to. Take care.

Hi Kim I too find that chocolate for some reason makes me cough too. As far as the Rilutek it is recommended that it be taken on an empty stomach either 2 hours after or 1 hour before eating. A glass of water should be used to wash it down. The coughing fit was probably a bit of choking because it went down the wrong way being stale and hot. I wouldn't worry about it unless it happens a few times a day. Take care. Al.
Here is an excellent article by Diane Huberty that all PALS & CALS should read about the different types of choking. I normally get the Damn-Near Heimlich Choke or The Foodless Sneaky Choke:

All Choked Up

Pat McClellan

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."
Thank you all so much for your updates...

I am trying to learn to remember that just cause dad has ALS it does not mean that everything that he gets or does is cause of ALS.

Hard to learn... But will continue to learn :)

Dad actually got out of the house and in the yard and swung the club. He did real well... Then he went on the driveway which is gravel and did not fall but was real nervous. He began to do the nervus thing. Big wide eyes, a few deep breaths, and of course the nervous clearning of the throat and coughing. He talked himself down played for a bit longer and was fine. Can someone with ALS tell me when you are nervous and all the tightness happens and these little triggers go off is it like a rus of aderliene? I ask cause a simler thing happens to me can I have panic disorder and I know how overwhelming the feeling is and I hate that dad has to feel this on top of the ALS issue. Is is a similer feeling for those that are familer with it?

It seems that he is doing great. Certain things we have to make sure of and all is good.

Thanks again in advance for your response.

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