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Kennedy's Disease Chat Transcript 08-16-2008
Topic: Choking & Swallowing
Host: Bruce Gaughran
BEGIN CHAT
Bruce: Morning
poohsdaddy: Good Morning--I got here a bit early too; and admire you being able to get up with Pacific time
poohsdaddy: Terry said that he would probably be here today with more information about the conference in Baltimore in the Fall.
Bruce: Check out the information on the conference in our web site. It was updated this week. You should have also received an email with a PDF file attached last Thursday or Friday.
Bruce: Morning UTE
UTE: Morning Bruce, Pooh and SH
UTE: I read the last meeting Minutes... glad to hear Terry avoided the fire!
Bruce: The last two weeks our weather in Georgia has been a little cooler. It has been nice compared to the previous three weeks with record temperatures.
SH: Goog morning everyone
Bruce: Yes, Terry said they were about 25 miles away and they were never in any danger.
UTE: We had an above average hot summer too until recently
Bruce: We were concerned because they have two horses, two dogs, about a dozen cats, and who knows what else. That would have been a nightmare trying to round up everyone of the critters and evacuating.
Bruce: Where are you located UTE?
UTE: Pooh and SH what states are you in? I'm in Utah...(use to be MICH)
SH: I'm in Michigan.
Bruce: Okay Rick, I didn't recognize the UTE ... How are you doing, guy?
Bruce: Morning DsProul
dsproul: Yes GOOD Morning
UTE: This seems to the year for breaking my feet...one at a time... but at least theres only two
Bruce: We are about six minutes away from officially starting the chat
dsproul: Early for me though
Bruce: Where are you located dsproul?
poohsdaddy: I am from WI (near Milwaukee)
dsproul: yakima WA I usually ge up at 8 am
UTE: So we have a couple midwesterners... Sh what part of MICH are you from?
Bruce: I am originally from Minnesota and then moved around - CA, GA, FL, PA, WA, PA, and finally retired here in GA.
Bruce: When I lived in Federal Way, we went to Yakima quite often. Great country!
SH: Albion. I'ts about 15 miles west of Jackson. Grew up in Detroit.
Bruce: Morning Don, how are you?
poohsdaddy: UTE--Do you think the climate from Utah has an effect different than when you were in MI?
Darwyn: good morning all
FL-DON: Use to live in warren, east detroit, sterling heights and caseville
Bruce: Morning Darwyn
FL-DON: now in fl
Bruce: Morning Ron
Ron: God morning Bruce and Don.
FL-DON: gm ron
UTE: When I was in Michigan I was there till after college... had no idea I had KD... snow and heat in Utah is difficult and adds to my injuriies
poohsdaddy: Has anyone considered a study of KD with regard to location--and progression??
Bruce: UTE, how did you break the bones in your feet? Separate falls?
Bruce: Not that I know of Poohsdaddy, but anyone living in the cold definitely knows the impact KD has on the muscles.
FL-DON: was told by my neuro that there seems to be a connection to pa.
Bruce: BEGIN CHAT
Bruce: ic for Today: Are you having problems with choking or swallowing? In the KDA Forum, several associates have mentioned choking and swallowing problems. A few, who are only in their forties, commented that they are experiencing these problems. We have heard that this problem can become a serious issue with some folks in the 60's and 70's.
Bruce: Morning Carofer
Bruce: Are any of you having problems with choking or swallowing?
SH: I have the issues now. Have had choking problems for about 5 years now. I'm 56
carofer: good morning and yes, i had a choking episode this week
carofer: i am 59
dsproul: Bruce I have to lean forward when swallowint to avoid chocking
Darwyn: yes
FL-DON: ive had choaking problems for 20 years
Ron: Hi Bruce-Yes--choaking is an ongoing problem with me. Still cutting food into smaller pieces but still having trouble.
Bruce: Morning Mike
MikeG: Morning Bruce
dsproul: makes it tough if I have to be in the hospital for anything
poohsdaddy: My swallowing is okay most of the time. Problem only when I try to eat too fast or don't take enough time chewing
Bruce: Well, it seems almost unanimous, we all have problems with it.
Darwyn: eveything catch in my larnix
Bruce: The biggest issue is too large a bite or too large a piece of meat. Cutting the pieces into much smaller pieces will go a long way in helping. Taking smaller bites and fully chewing each piece will help even further. Meat is the most difficult to swallow ... especially beef products. Dry toast and white bread are also difficult to swallow. Another problem is talking while chewing (or with food in your mouth).
carofer: right, poohsdaddy, it's when i am tired or eat too fast or not paying attention to eating
Bruce: I talk while chewing way too often ... I never listened to my mother about talking with your mouth full.
SH: I find my choking problem is related to certain foods. Have a lot of trouble with rice, corn and french fries.
Ron: Liquid is also a problem sometimes.
dsproul: cruncy cereal often does it for me
FL-DON: and always have a glass of cold water at the table
dsproul: thats a must
Ron: Blanc pepper sometimes causes choaking. Does this affect anyone else.
FL-DON: i can feel food getting stuck in throat even if i don't choak
carofer: i have to be careful drinking a scotch
FL-DON: use water to clear
UTE: Feb 29 it was walking a few paces in front of my house... garage to car... and it was colder than I had anticipated... so I pushed my self too hard... 2nd time July 28th ... walked too much late at nite and fell inside house... and yes have monthly if not weekly choking at age 62... it can be cause by temperature or just about anything
Bruce: I found that if I practice the swallowing exercises provided in the exercise guide and I do them every day, it really helps. At first ten swallows is difficult, but over time it becomes easier and so does swallowing food.
SH: I find that water will make me choke. Milk, Soda or coffee is ok.
dsproul: any pill larger than an asprin will do it
poohsdaddy: Angela (from NIH) made many of the same suggestions; and also gravy or sauces, etc can make it slippery and easier to swallow.
MikeG: well I haven't had the dry drowning experience in quite some time and I never have the choking while eating - could it be the Neurontin (Gabapentin) that I'm taking?
Bruce: Robbie2 in our KDA Forum provided the following information on problems with swallowing/choking: The family doctor can order a Swallow Study (VFSS). This entails drinking a barium 'cocktail' and then eating and swallowing a variety of foods/liquids while a radiologist takes a video x-ray of the entire procedure. The information gained from this canbe helpful. Example: When swallowing a food or liquid, therecan be a considerable amount left behind in the throat - even though there is no sensation that there was any food there. You have to be careful to chew everything thoroughly and swallow a few extra times for each bite. It will slow down your eating considerably and sometimes you might become tired before the meal is through.Robbie2 in our KDA Forum provided the following information on problems with swallowing/choking: The family doctor can order a Swallow Study (VFSS). This entails drinking a barium 'cocktail' and then eating and swallowing a variety of foods/liquids while a radiologist takes a video x-ray of the entire procedure. The information gained from this canbe helpful. Example: When swallowing a food or liquid, therecan be a considerable amount left behind in the throat - even though there is no sensation that there was any food there. You have to be careful to chew everything thoroughly and swallow a few extra times for each bite. It will slow down your eating considerably and sometimes you might become tired before the meal is through.
Bruce: What does Neurontin do for you Mike?
Darwyn: i find any dairy product causes build up of flem in throat
Bruce: These are the recommendations that the speech therapists gave her husband, following his Barium Swallow Test: * DO: Drink fluids with each meal - helps wash down solids * Choose open-faced sandwiches/burgers - easier to eat than 2 breads plus filling * Take smaller bites with each mouthfull - use a tsp instead of Tbsp/dessert fork rather than a dinner fork * Choose soft foods that breakdown easier * Check mouth for residue before next bite * Take 2nd swallow (dry), then take sip of fluid and swallow in between bites * Clean your mouth after eating
MikeG: it's designed for spasms I believe... but my doc perscribed it when I came down to Florida.
Bruce: * AVOID: Toast (dry foods) * Breads that are sticky * Sticky foods * Distractions - talking while eating/multi-tasking while eating
dsproul: Bruce sound like good advice
Bruce: * CALL IF: Unintentional Weight Loss * Meal times are lasting more than 45 minutes (very tiring) * Coughing, choking, gurgling with meals * Not feeling well after meals
MikeG: I eat peanut butter all the time - np
Bruce: Peanut butter isn't a problem for me, but peanuts with the husks on them always causes me problems.
carofer: i asked the swallow-testing doctor at NIH if I was in danger of suffocation if I passed out during choking -- she said that the involuntary muscles would take over and start my breathing again...fwiw
Darwyn: i'm restricted to a minced food diet
MikeG: is anyone taking Neurontin or Gabapentin with the swallowing problem?
dsproul: When eating with others and they expect a response then it's tough
MikeG: peanuts with husks - np
Bruce: Another option is to use a blender or food processer for specific food that is enjoyed but difficult to swallow. know of several that can only eat blended food.
Darwyn: water between most bites
dsproul: and no talking!
Bruce: Swallowing Exercises: Terry Waite saw a TV program where they were showing an exercise to help being able to swallow food easier. This exercise was for patients that had had throat surgery and the muscles became weak after the surgery. It is to strengthen the swallowing muscles. There are 2 exercises; 1. Stick your toung out and bit down slowly on the tounge to hold it in the out position. then swallow 10 times while holding that tounge between the teeth. Do this numerous times a day. 2. make the sound EEEEEEEEEEEEEEEEEEEEEE on and off and you will feel the neck and throat muscles stretch. They reported good results on patients that had swallowing problems with food.
FL-DON: my wife blends salads. they taste the same as normal
Bruce: I practice these exercises every day; often several times a day. It has been very helpful.
Darwyn: that would be me bruce, minced or blended
Ron: During the swallowing barium test at NIH I had to swallow several times to move the food from my throat.
carofer: thx bruce, i am gonna try them
Bruce: Reference Choking : My neurologist recommends that you practice coughing hard (using the diaphragm) several times a day. It will strengthen the lung and diaphragm muscles and will help you clear your throat should you ever choke.
carofer: my doc gave me nitroglycerin to put under my tongue if i started choking -- i never tried it. Has anyone else?
SH: I had one doctor suggest electro-stimulation for the swallowing problems. Anybody know if it works, or how effective?
Bruce: Whenever I see my neurologist, before we start he always has me cough (hard) several times.
Darwyn: my respiratory doctor sad same about coughing
Bruce: I also notice that if I have ice cream or other dairy products that my flegm (sp) becomes very thick and makes it difficult to swallow.
Darwyn: said
Darwyn: breathing also bruce
Bruce: Morning Gopher
dsproul: doctors here in Yakima wont offer any advice
Gopher: Morning..
FL-DON: dairy products cause the flegm. i avoid
poohsdaddy: No problem so far with dairy products;and being from the dairy state.
Bruce: But, Don, what does an ice cream addict do about no fix (a large bowl) for the week?
FL-DON: i have post nasal drip which causes lots of coughing
FL-DON: drink beer i nstead
Bruce: Good advice!!!
Bruce: My brother swears by beer
carofer: there is a big difference between difficulty swallowing and having the throat spasm that prevents you from breathing -- i think the doctors are clueless when it comes to the spasm, but that has been the most frightening to me.
Bruce: Yes, you might be talking about a term we use ... dry drowning
carofer: right, bruce
MikeG: I have lots of flegm after I eat Mexican food or hot salsa - but I like it too much to stop eating it...
Bruce: It is very frightening. Especially for our spouses.
dsproul: The excersises are the best was to go
poohsdaddy: I take an allergy medication daily which helps reduce the mucus and pflegm in throat
FL-DON: i concentrate on being relaxed when i get throat restrictions. seems to relax me faster
UTE: Another term for it that doctors will understand is esphogil spasm (sp?)
carofer: that's been the most important thing for me, fl-don: do your mantra or whatever it is that relaxes you and always know that it's going to go away
Bruce: That takes a lot of discipline, Don.
Gopher: How frequently do you have dry drowning? Seems to go in streaks for me
dsproul: Post nasal drip--dairy products--all of the above does it for me
Gopher: Colds are horrific
carofer: nowadays, dd happens less than once per month
Ron: When having a choaking episode if you stretch your neck back and to the left or right--this will help to clear the obstruction in the throat.
FL-DON: just learned to relax over the 20 or so years i have had this (&&^$%&*( problem
Bruce: Fortunately, I haven't had an episode of dry drowning in some time. It happened frequently about ten years ago.
murf: morning all
Bruce: Morning Murray
MikeG: Hi Murf
dsproul: maybe we should all be more diligent with our execcises
poohsdaddy: My coughing episodes are almost daily--usually when I first get up and before having large glass of water or cup of hot coffee.
Bruce: It almost always happened to me when I was in bed sound asleep.
murf: hey Bruce mike
Gopher: in bed sleeping, YES
MikeG: all eyes on Fay here lately...
Ron: Hi Murf.
Bruce: I have hayfever. And when everything is in bloom, I have to more be careful.
murf: Hey Ron
MikeG: how was your last hurricane, Murf?
dsproul: Bruce I try to go to bed with an empty stomch, that helps
murf: Didn't even water the lawn
MikeG: :)
murf: yup thats ok
MikeG: best kind!
Bruce: Yes, dsproul, that has been extremely helpful for me. I don't eat anything after six at night.
Darwyn: :}
carofer: bruce, if you have gerd, the acid reflux may cause it when you are lying down. I always take my anti-acid pill before bedtime and that seems to keep the problem at bay.
Bruce: No, fortunately I don't have any acid reflux related problems.
Bruce: I just sleep better when I don't have a late night snack.
Ron: Has anyone else experienced weakness since no longer taking the drug at NIH?
MikeG: carofer - what do you take?
carofer: famotidine
Bruce: I also drink plenty of water every day and that helps keep the pflegm loose.
carofer: over-the-counter
MikeG: ok, tnx
carofer: the nih trial does not end for me until november
poohsdaddy: Is that the reason the pill bottle for famotidine (pepcid) suggest taking it at bedtime rather than during the daytime?
Bruce: Mike, I also love Mexican food, but I don't seem to have any problems with it.
murf: Any one have trouble getting pflegm from deep in the lungs?
carofer: not sure, but it works for me, poohdaddy
carofer: murf, it's tough to get a \productive\ cough for me
Bruce: Murray, that is the most dangerous. Coughing exercises help keep that free most of the time.
murf: I haven't got the strengh to cough hard enough
MikeG: I wish I didn't, Bruce...
FL-DON: murf, i have had lots of phlegm the last month or so. fl allergies i think
murf: anyone try those coughing machines?
FL-DON: think they have a maching to assist clearing throat
FL-DON: machine
carofer: i think milk and dairy products can aggravate phlegm production... i try to avoid these near bedtime
Bruce: Yes, when my brother was in the hospital, he had to use it regularly to keep things clear.
FL-DON: yeppers carofer
Bruce: Beer is the answer; right don?
murf: I might try one
FL-DON: definate yeppers
carofer: we like wine in california
MikeG: not just any beer - Fosters!
poohsdaddy: Seems to be a seasonal thing for me too with allergies and high pollen counts, bad air days
FL-DON: omg oilcans
dsproul: on occasion I choke on plain warer
FL-DON: me2 dsp
Bruce: When I drank beer, my favorite was Special Export.
carofer: guinness stout for me
FL-DON: any brand will do
murf: when I drank beer my favorate was an open one
MikeG: Pearl?
dsproul: carofer Yeah!
Ron: My favorite beer is FREE!!!
FL-DON: wet
MikeG: cold
Bruce: I can tell that most of you are experts on this subject.
FL-DON: getting thirsty here
poohsdaddy: Haven't actually had a beer in years, but use one for soaking and cook brats and burgers.
dsproul: :) :)
Bruce: Awh ... brats, the food of kings
MikeG: only trouble now is - I have to quit after two or I fall down... :(
FL-DON: prone is our best pose
carofer: i just tried some hemp beer from humboldt county, cal -- very good
Bruce: Did anyone notice how we moved from a serious subject to a more enjoyable topic?
MikeG: :)
FL-DON: beet is serious
FL-DON: beer
dsproul: Moose drool from Idaho
MikeG: hemp - now yoiu're talking...
Bruce: Well, I have a smile on my face after all of this ...
MikeG: me2
Bruce: Mike, that is hemp beer ....
FL-DON: all set for the convention, amtrac
dsproul: :}
MikeG: I know... :(
poohsdaddy: Yes; none of enjoy the difficulty swallowing or choking episodes.
Bruce: You don't live in California where it is medically acceptable to use hemp
murf: gee I showed up and the chat went to he...
Bruce: YUP, you are a bad influence, Murray
murf: LOL thanks
MikeG: did Nevada also pass a law like that Bruce?
Bruce: Don't know, but I wouldn't doubt it. ... stays in Vega
carofer: once, when i had a choking episode eating rice in a chinese restaurant, a gentleman from another table gave me the Heimlich maneuver, and it cleared right up -- (embarrassing, but effective)
FL-DON: any news on the research front?
MikeG: carofer - that's a good idea!
Gopher: yeh, my son broke a rib doing it to me, but it worked
dsproul: when I choke I can breath out but not In
Bruce: Well, we are accepting final proposals for the KDA research grants right now. We have three that look very interesting.
dsproul: Bruce good to hear that
Gopher: Tell us more, Bruce
FL-DON: the day they solve this illness, i'm gonna drink a ton of beer, all kinds
Ron: I was always told that you don't use the Heimlich manover unless the person stops breathing. Is this right?
poohsdaddy: In what way--medicines, diet, exercise, or something different???
carofer: ron, i was not breathing at the time
murf: No Ron
dsproul: they better hurry up I'm 81
Bruce: I don't have the ability (smarts)to easily put the research into a short paragraph. We will be publishing the results in late November or early December, however. Sorry. If Ed was on today, he could easily summarize the findings and research, however.
murf: If they can still take air let them so I guess the answer is yes
Bruce: I can say that all three research papers are focused on the DNA factor and using drugs to reverse the wasting process ... but by different means.
MikeG: when I had a dry drowning episode I couldn't breathe in OR out!
dsproul: I'm ready to try anything---whats to lose
Gopher: Mine differ a lot...
MikeG: Heimlich sounds good to me.
poohsdaddy: How many KD members are there for the chat room? I usually see 8-10 names per session.
Bruce: The exciting news is that there are several labs across the world that are focused on KD research. It is quite promising.
Bruce: I don't understand the question poohsdaddy.
UTE: I'm with Mike...can't breath in or out when it happens
dsproul: can you still get out a word?
murf: Been there, its scarry when you're alone
MikeG: not me!
Gopher: or with somebody too
carofer: i have trouble breathing out, but nothing at all comes in
poohsdaddy: Are there even more invited to the chat; with a limit as to first come to participate?
murf: no one to do the Heimlich
Bruce: When we have a special guest, we can easily have 20-25 associates on the chat. We usually have less attendees in the summer.
Bruce: Everyone can register for the chat and we can take up to 50.
murf: I think we have a 30 member chat limit at one time
poohsdaddy: That's the answer I was looking for
dsproul: I have to push out a \NO\ when someone offers to pat my back to relieve the chocking
murf: ok 50
Gopher: agree dsproul
Bruce: The biggest reason that we don't have more attendees is that it is already happy hour in Florida
dsproul: I'm usually sleeping the best at 7AM
Gopher: Thanks for chat...nice to know you are not alone with problem
Bruce: By the way, this years conference is scheduled around the SNF conference, so we believe we should have an excellent turn out of researchers and doctors. We also are trying to have a tour of NIH scheduled for Friday afternoon.
Bruce: Mornig Dart
carofer: what is snf?
Bruce: It is the society of neurologists (largest concentration at one place).
murf: SFN?
murf: SFN
Dart!: Good morning All
Bruce: Thanks Murray, TYPO
FL-DON: enjoyed the chat. ya'll take care now, bye
Bruce: Take care Don
murf: CYA Don
Bruce: Several thousand converge at one time to discuss results
Ron: So long don.
UTE: So how far is NIH from Baltimore?
Bruce: 20 minutes
dsproul: I'm going to see if I can get someone to prescribe famolidine or neurontinin
Bruce: The plan is to have the tour while the doctors/researchers are having their private break out session.
poohsdaddy: Or $100 by taxi--no shortcuts the last time we were there
carofer: famotidine is available over the counter
Darwyn: takes 45 min from Reagan airport
murf: The Hotel will be about 45 minutes from NIH
Bruce: We are at the Marriott - Baltimore Washington Airport
dsproul: I have't seen it
Bruce: It is half way between Baltimore and DC
murf: Good Hotel we were there for our first conference
dsproul: can't travel much anymore
murf: Hopefully Mary K will not be there
Bruce: The conference planning team led by John Coakley has done an excellent job of putting together a great schedule for this year.
murf: dsproul nether can I but this will be no problem
poohsdaddy: I have nieces and nephews in the Baltimore area, but the air fares and restrictions are getting rediculous
dsproul: Long rides kill my back
murf: Oil is coming down
MikeG: yep! $3.65 in FL
Bruce: If you can't make it, we will try to summarize all the activities and results in the month following the conference and have a special chat room to answer questions about/from the conference.
dsproul: Good to hear
Bruce: We have heard from several researchers and junior researchers who plan on attending.
murf: and post on our conference page
poohsdaddy: Travel arrangements to and from NIH were very helpful. Gas here was $3.87 yesterday.
Bruce: I believe the doctors and researchers look forward to it as much or even more than we do.
UTE: Does anyone know how the accomodations for power wheelchairs are on AMTRAC to Baltimore?
Bruce: I wish Don was still on, because he was planning on taking AMTRAC I believe.
murf: they do Bruce it gives them a venue they don't normally get. Friday afternoon to talk
MikeG: yes, Don is taking his.
murf: UTE I'm bringing mine
dsproul: We need more trains to solve the gas shortage
murf: Yes we do
poohsdaddy: That all sounds great! Yes, Amtrac has personnel and equipment to get you in and out as needed with no additional fees.
MikeG: Don is going via Amtrak too.
Bruce: Rick, that is a good question though. If you find out more, please let me know and we will try to post the information on our web site.
MikeG: has to take a commuter train from the Amtrak station to the Hotel
dsproul: Time for breakfast!
Bruce: Do they have special rest rooms that are handicap (wheelchair) accessible?
Ron: Good question Bruce.
dsproul: The LA to San Diego does
murf: Hey Darwyn you ok?
poohsdaddy: Yes, we took a few extra days and used Amtrac to get from NIH to our son's in PA.
Bruce: I haven't road the train for ten plus years. I am certain things have changed.
Darwyn: yes things are okay
carofer: what's the closest amtrak station to nih?
Darwyn: how about you?
murf: Good will you be coming this yr?
murf: I'm ok
poohsdaddy: We went from DC (Union Station) to Philadelphia.
Darwyn: no, can't travel
Bruce: Well folks, I really enjoyed your participation in the chat today. I need to log off and take my dog for a walk before the Board meeting. Take care and stay upright!
murf: Well we'll be thinking of you anyway
carofer: thx -- i saw some kind of train station directly on the nih campus, but i don't think it was amtrak
MikeG: me2 - been nice chatting with everyone - take care.
poohsdaddy: They also have several stops in Baltimore and heading North.
carofer: good subject -- thanks bruce
Darwyn: hanks, i would love to be there.
Darwyn: thanks
murf: We'll send you some pictures etc
carofer: i am gonna try to make it to the conference -- my first one
Darwyn: good
poohsdaddy: Thanks to all--hope to be here again on the 30th. BYE
murf: I need to go so stay vertical all
murf: cya
carofer: cya, had fun
SH: Bye
UTE: My computer and it's software are about 10 years old so have trouble getting into chat and can't type in instant messages... if your willing...SH...(and anyone else for that matter can e-mail me at
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
... I use to live 20 miles from Jackson when I was growing up!
Darwyn: bye all
Dart!: Be well, All!
UTE: Talk to you all next time
Ron: Stay healthy till next we chat.
poohsdaddy: You guys can e-mail me too at
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END CHAT
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