Location: California, USA
I found a good site and explanation for this common symptom that we with KD have often.
Location: San Luis Obispo CA
Very helpful post!
I kind of had discovered on my own that breathing in very slowly during a "choking" episode was the best solution. This paragraph from the article confirms:
"With the Bernoulli principle in mind, one can see that slower breathing in will effectively get more air into the lungs than rapid breathing in. In fact, we spend most of our life breathing out, as in talking, then we take a quick breath in and spend more time talking. When one has an episode of laryngospasm, one can reverse this usual trend and take most of your time to breath in slowly and then a quick breath out can be followed by another slow breath in. This can be repeated until the spasm stops."
Another benefit of breathing in slowly is that it doesn't scare the crap out of those around you!
email:rheitzman at gmail
I'll second that - Very helpful! I wasn't sure that these alarming episodes were attributable to KD, but this so accurately describes what I experience that I'm now in little doubt.
It is interesting to note that an episode of larnygospasm ("dry drowning") is caused when food or water touch the vocal bands. Here's a quotation from the www.voicedoctor.net website:
"As soon as your voice box or the area of the windpipe below the voicebox detect the entry of water or other substance, the vocal folds spasm shut. Evolutionarily speaking, this works very well to keep water out of the lungs - if you start to drown or a bug flies down your throat while you were starting to inhale, or you inhale that glass of water, then the vocal cords very immediately and very effectively close."
A contributing cause is weakness in the throat muscles. There is a very good, and easy, exercise that strengthens the swallowing muscles in the throat, and that helps to reduce the laryngospasm. The exercise is described at this website:
Also check out the KDA forum under \Exercise discussion\Swallowing exercise?\
Location: Las Cruces, New Mexico
I tried to click on some of the links and it said the link expired or no longer used. I can however get voicedoc videos and it has helped a lot. I have lost more weight due to my throat, I have trouble swallowing food. I guess I never thought it was a spasm because it felt like a lump...I hate that feeling. Thanks for educating me on me!
Lori, what links are you referring to? All the links on this page work for me. Let me know which ones you are having trouble with.
Here is a another link to a medical article that talks about a similar type of swallowing exercise.
I have tried these exercises myself and I am very pleased with the results for improving swallowing and reducing larnygospasm (dry drowning). I recommend them highly.
1. When I was at NIH in the dutasteride trial, I asked the "swallow doctor" what would happen if I passed out during a laryngospasm due to lack of oxygen. She said that my throat would then relax and I would be breathing again (assuming there was no throat blockage).
2. Parents are told to teach their children to raise both arms high if they feel like they are choking. I tried this during a laryngospasm recently and it worked beautifully, relaxing the throat and making it possible to breathe again. Your mileage may vary.
The best advice I received was to "relax" and accept the fact that you WILL survive this, even if you pass out. If a laryngospasm happens, I immediately go into meditation mode and try to extract myself from the current situation, and allow it to pass without forcing anything and definitely not panicking. It works for me.
During the latest KDA Convention in San Diego, the moderator asked if anyone had ever passed out from a laryngospasm. NO ONE raised their hand.
My husband has recently been diagnosed with Kennedys Disease. He is 33. Symptoms have appeared quite rapidly over the last few months. The most alarming for him has been difficulty swallowing and feeling like he cannot breath. There is very little services here in Australia so we dont really know who to go to for support. We would really appreciate any advice.
i think this is one of te scariest parts of KD. When Bob started doing this, he would look like he was going to pass out any second. His MDA Dr called it dry drowning. He also told us the throat will relax if he passes out. I have him raise his arms and I pat hardly on his back and keep saying, "try to relax." At night, i'm tuned into the breathing and get tell if he is about to choke. He cannot sleep on his back; two pillows also seem to help a lot. Contact me anytime to tak "wife stuff!"
God is the greatest physician of all.
Practically all of us with SBMA/KD have experienced laryngospasm, and I can tell you from personal experience it is very scary, as it feels like choking or drowning. But every time it has happened to me, I have been able to get my breath back.
When actually having a spasm, I have had good success using the advice higher-up in this discussion thread from Bob H. Purse the lips as if using a straw, then breathe in and out very slo-o-o-wly. It is the opposite of the first instinct to try taking a big gulp of air, which makes things worse for me.
To prevent future spasms and swallowing difficulties, have your husband talk to the doctor or physical therapist about trying the throat-strengthening exercise at: http://www.mcw.edu/display/docid26360.htm
It has helped me a lot.
Finally, tell your husband to talk to the doctor about getting the pneumonia vaccine. The swallowing trouble makes it likely he will aspire some liquid into his lungs, putting him at high risk for aspiration pneumonia. The pneumonia shot could save his life someday.
Good luck and keep in touch.
This message has been edited. Last edited by: Dan B,
Dan did an excellent job of explaining the situation as well as provide helpful suggestions.
Dry-drowning sounds and appears more frightening in the beginning. Almost everyone with KD does experience this problem at some time. It still happens to me occasionally, but not nearly as often. I normally wake up in time to clear the throat.
When it does happen, have your husband sit up immediately (throwing his feet off the bed). Sitting up helps because you are not compressing the lungs. I also keep a glass of water next to the bed and I find that taking a drink (rinsing out my mouth) every so often during the night helps.
Throat exercises, you can find several on the KDA website ( http://www.kennedysdisease.org...357-throat-exercises. There are also some exercises in the KDA Smart Exercise Guide ( http://www.kennedysdisease.org...ormation/info-guides).
One other strengthening exercise that can make a difference (not just for dry-drowning) is the "hard cough". Several times a day have your husband cough as hard as he can. It is best when first accompanied with a few strong "sniffs". When you do this you are exercising your lungs and keeping them strong for when you need to clear your throat or lungs.
The key is to be proactive with throat, tongue and lung exercises to that they are all functioning normally when you need to clear phlegm.
Recently I have experienced a continuous difficulty swallowing, which has coincided with a persistent cough. Has anyone else experienced this sort of thing? I did go to the doctor and there was nothing in the lungs to indicate pneumonia.
Pete, thanks for sharing. It is difficult to say what happened. If allergies, a cold, or the flu were not involved, who know what it could have been. Pneumonia is still the major threat, especially later in life. You did right by seeing your doctor. Not everything is KD related.
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614