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PeteJr

New member
Joined
Sep 8, 2013
Messages
8
Reason
PALS
Diagnosis
07/2013
Country
US
State
Utah
City
Lehi
Hi everyone....Im glad this forum is here to help me and anyone else with this horrible diease. My wife and I first noticed my systems by my slurred speech, it wasn't bad, and that was in March. At first everyone thought I was drinking too much or drunk. Then my right arm started twiching from my middle arm up to my shoulder. So I was just blowing it off and everyone said it had to do with something else. But as the months progressed my speech got worse and went to the University of Utah doctor on July 18 and diagnosed with ALS or motor nureon diease as of today my syptoms are my speech is to the point that my wife hardly understands me. It is so hard for me to get words out, but my brain says to me just say and talk normally. But when I try to speak its all a slur..... I am now having a hard time swallowing. I have been drinking the drink brand Naked and the flavor is Mango. It seems to break up the flem so that I can't clear my throat. My question to anyone is now more often I am experiancing bouts of choking to the point that I act like Im going to throw up. But nothing comes out, and then follows the closing of my vent tubes and can't breeth... then I go into panic mode and it makes it worse. I have to calm myself down to start my normal breathing again. So has this happened to anyone, and how do you control it or make it so you can breath easier.

I try not to think about whats ahead and I am to the point where I am having to get a program where I can type my conversation. I am 58 years old and am at the point in my life where I want to enjoy it. But this is slowing me down. Lets all get together and be strong for each other and beat this stupid disease. Thank you all for your time. And any help would be apprecaited......
 
Welcome and sorry you are here. A lot of people seem happy with the IPad apps for speech My sister lost her hands first so now her voice is going she has a dynavox. Sometimes using a thickening agent can help with the choking on liquids at least for a while. Go slowly, small amounts tuck your chin when swallowing. Talk to the people at ALS clinic about this too.
Start doing all the fun things you have been putting off and try to take one day at a time!

Best wishes
Nikki
 
Sooner or later we all experience the same symptoms and problems. Here is my two cents for what it is worth Try assistive express app. on an IPAD if you need to speak.. A boogie board from Wal-mart is lightweight and accomplishes the same as long as your hands still function.The choking thing is scary. The best liquid i've found so far is V-8.
For meals I'm on the blended clam chowder diet. It is easy to say don't loose weight but it something else in reality.The thickening agents work but don't do much for flavor. I attended an ALS symposium this past weekend at MGH and found that when you join this exclusive club it is good to be overweight and have high cholesterol. I've found these forums very informative so my advice is you should bookmark this website.
 
Hi, Pete -- you and I seem to be in a similar place. I am 61, left hand is almost useless which I blamed on a stroke event a year ago, but the speech and swallowing led mt to Dr. Appel's ALS research team last month. My wife, Sandy, says she can still understand me but when I hear video/audio when I am shooting the dogs, I can hardly understand what it is I am saying. Eating is very slow and I have to concentrate on every phase -- chewing, swallowing, etc.

you can find pictures and video clips of us (mostly our dogs) on Facebook ([email protected] or [email protected]). We may not have time to beat this, but I am damn sure going to try :). This is our season!
 
have you considered a feeding peg ?

Every time food goes down your lungs you are shortening your lifespan.
 
I am also new to this site. My husband was diagnosed with ALS in June of 2012; we noticed slurred speech late fall early winter of 2010/2011. At first doctors thought he had had a TIA. Regarding the phlegm in your throat, my husband uses a suction machine which helps tremendously. This was also recommended by the doctor.

K
 
I was also diagnosed on 7/18/13 in Columbus, OH. Although now my new doctor says it is not 100% but I think he is just doing all the tests to rule out anything else before he confirms the first docs diagnosis. One day at a time!
 
Get some good drugs for the anxiety.
 
Hi PeteJr,
The bouts of choking and sensation of vents closing like you describe sound a like "laryngospasms". Of course, I am not sure and guessing but simply wanted to share that I have these spasms quite frequently and regularly. It is like a "charlie horse" of the vocal cords and for a few seconds no air can pass through.

What seems to help me:
Drinking lots of cold water or hot water with honey & lemon throughout the day
As soon as i feel a throat tickle, i drink cold water (i always leave a full glass beside me just in case)
Breathing through nose as much as possible during the spasms and finding a way to stay calm

These laryngospasms are terribly scary and super uncomfortable. Talk to your dr or ALS clinic. If your swallowing is affected, you might want to try another way other than drinking water as it will increase your chances of choking.
 
Hi PeteJr,
The bouts of choking and sensation of vents closing like you describe sound a like "laryngospasms". Of course, I am not sure and guessing but simply wanted to share that I have these spasms quite frequently and regularly. It is like a "charlie horse" of the vocal cords and for a few seconds no air can pass through.
...
These laryngospasms are terribly scary and super uncomfortable. Talk to your dr or ALS clinic. If your swallowing is affected, you might want to try another way other than drinking water as it will increase your chances of choking.

ditto that Cricket! I have been having these since last June and have to concentrate always when drinking anything!

Max
 
What Cricket said as far as the laryngospasms. My husband experienced a few and they were scary but breathing through your nose and knowing that the spasms will pass, might calm you down a bit. Speak to your ALS team too to ask about ways to swallow different foods, to avoid choking episodes and aspiration. Also, try to keep meal times quiet so you can focus on eating and swallowing carefully. This might help until you start to use a PEG if that is your choice. So sorry about your diagnosis. Yasmin.
 
My PALS experiences the same, and he says it is like his palate just closes off. When we had the barium swallow study we could see clearly that his palate hangs down way too low in his throat.

Aspirating or choking is really scary and it took him a while to learn to stay really calm through an episode but it helps him so much. He was quite anxious about it for a while, but he did get a lot calmer, but it is really a disturbing feeling.

Cold water is what my PALS has most trouble with, and he has excess saliva that can also just be a cause of a sudden aspiration.

I really am in awe of him sometimes how he manages to stay calm, but he tells me that it really does make all the difference. He has trouble breathing through his nose too, but it's more the staying calm. NOT EASY I know I don't feel calm when it happens!
 
Welcome and sorry you are here. A lot of people seem happy with the IPad apps for speech My sister lost her hands first so now her voice is going she has a dynavox. Sometimes using a thickening agent can help with the choking on liquids at least for a while. Go slowly, small amounts tuck your chin when swallowing. Talk to the people at ALS clinic about this too.
Start doing all the fun things you have been putting off and try to take one day at a time!

Best wishes
Nikki

Nikki, thank you so much for replying to me, that really helps by tucking my chin down, I grab a drink of water when my throat starts to tickle and it seems to help a little. I had a thread from another member and it told me to watch the You Tube called the ABCs of als and it had a lot of information. I wish the best to you...Pete
 
Thank You Richard, I will try the V-8 another thing that helps me a little is those Naked Brand Mango drinks, there thick and make things go down easier and it breaks up the flem a little. I hope everything is going well for you. Pete
 
Max, I totally agree with you this is our season. How long have since you were diagnosed and how is your swallowing? My voice is pretty much gone , I can still blurt out a word if I really concentrate on it, But my brain goes faster than my mouth, so I am having to learn this. Hope all is well and thank you for getting back with me....Pete
 
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