Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Back in the late 1990s, I felt alone. I had just been diagnosed with Kennedy's Disease. I came across the KDA and attended a Saturday chat. What an eye opener! There were two dozen others on the chat that were going through what I was experiencing."

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Kennedy's Disease Chat Transcript  02-06-2010

Topic:  Open Forum

Host: Lou Tudor


BEGIN CHAT

 

Stan: Good morning Paul. It looks like just you and me so far. Hope you are keeping warm. 20 degrees here in MI. At least the sun is shining.
Stan: Here I sie, waiting to chat.
Stan: Hi Terry.
TerryW: Good Morning
TerryW: I have not been in chat in a while
TerryW: I missed you all
TerryW: I was sick for a while
TerryW: am better now
TerryW: so what have you 2 been up to?
Stan: Anyway, to start where I left off. Here I sit, waiting to chat, playing with this, playing with that:| Nothing yet about which to converse, think I' start to write another verse.
TerryW: Hi Ron
TerryW: We are starting to put together the 2010 KDA conference for November
Ron: Good morning guys. It is snowy here in Penna. 22 inches so far.
TerryW: It will be good to see everyone and the newcomers there
TerryW: WOW Ron, I saw that on the news
TerryW: Hi Yakima
Ron: Are you doing better Terry?
TerryW: Ron, Do you have anyone to come help you clear a path to you house
yakima kid: Hi to you
TerryW: I am doing better ron
TerryW: They are giving me a Nebulizer
Stan: Sorry you wre sick. Nothing serious I hope. I 've been doing the usual, testing what I can and cannot do. Hangine Christmas lights and taking them down, shovelling snow as it hits the ground. Hi Ron. That's a lot of snow. Glad we don't have it here in MI yet. I remember getting that much here in years past.
Ron: Yes. My daughter Anita is living here with me,
TerryW: Stan, I had early stage Phnemonia
TerryW: spelling
TerryW: I fought it off with Zithromax
yakima kid: Whats up with KD? Any news?
loutudor: Good morning everyone!
TerryW: lots of different research going on
Ron: Glad to hear you are doing better. That is all we with Kennedys need is to not bemable to breathe.
TerryW: hi UTE & Bill
TerryW: Hi Lou
billeric: Hi guys
loutudor: Glad you're better, Terry
Stan: I have COPD on top of KD. I use a nebulizer daily along with an inhaler. It is what put me in the hospital for a month-and-a-half last summer. Still trying to get my fingers to work properly today.:}
UTE: Morning guys, Terry sorry to hear your sick
TerryW: I am still so weak though, cant seem to get energy to do anything
TerryW: They think a nebulizer will help
yakima kid: I keep hearing about promising things. When are we going to try them?
gary_kc: Good morning. This is Gary joining in from KC. It is 31 degres and couldy.
loutudor: Does your Dr suggest a special diet to regain your strength, Terry?
gary_kc: Hi UTE.
TerryW: Yakiima, Getting to clinical trails takes a while sometimes
loutudor: Good morning everyone...
UTE: Morning Gary, Bill...
Ron: What is happening with the 2010 conference and where will it be held.
Stan: Nebulizer Works well for me. I can breathe well enough to shovel snow! Strength is getting better, Terry.
loutudor: San Diego in Nov...
TerryW: Lou, no special diet, just want to make sure I am eating enough to maintain my weight and not lose weight
TerryW: I weigh 155
loutudor: Terry, I'll send you over a few calories!:}
TerryW: 5,11
Stan: I'm still on my weight-gain diet.
TerryW: Ron some info is on the website, we will post more as we get it
yakima kid: I'm ready to get into the trial loop. No info from any Dr. here though
Ron: Thanks.
loutudor: It is frustrating waiting for the trials to begin...
TerryW: Yakima, we will let you know when we hear of any clinical trials, the KDA will send out an e-mail to all that are registered with us.
billeric: Had my yearly MDA appointment this week. Nothing new but a chance to give an intern some info on KD. They rarely see one.
loutudor: KDA posts info on the website or a special e-mail is sent out for any updates...
TerryW: Lou is our chat host today, Lou did you have any particular topic in mind?
loutudor: Morning, Mike
MikeG: morning Lou
TerryW: Hi Mike
MikeG: hi Terry
loutudor: Today is an open forum...anyone have a special concern?
MikeG: not a bad crowd this morning
MikeG: hope everyone is staying warm
Stan: Too cold to do anything outside, so here I am. How are you all doing?
loutudor: We can discuss how you survive the cold weather....
Stan: Hibernate
MikeG: typical February weather in Florida - mid 60s
Ron: That's easy--stay inside.
yakima kid: Does anyone have trouble with swollen feet?
loutudor: Unfortunately that's what most do...
MikeG: I do if I take my blood pressure meds
TerryW: The Pulmonologist told me I don't qualify for a cough assist machine because my lungs are still strong. I guess that is a good thing
TerryW: hi murf
TerryW: happy Birthday
MikeG: hey Murf
loutudor: Happy Birthday Murf!!!
murf: hEY tERRRY
murf: Mike Lou
TerryW: Yakima, no swollen feet here
murf: ALL
TerryW: just numb feet
Ron: Happy birthday you old f rt.
murf: tKS rON
billeric: My ffet swell after I have been on them for a couple hours.
Stan: No swollen feet here either, just some numbness
yakima kid: Yeah that too!
murf: dam capocks
loutudor: Do any of you wear special shoes?
TerryW: I had to run warm water over my hands for a while to be able to type in chat, fingers were numb
TerryW: cold weather
UTE: They have inflatable inner tubes on planes...I wish someone would invent an inflatable cushion to boost a person out of the seat...it's hard on my wife getting me up. Numb, neuropathy, in feet, yes.
TerryW: UTE they have them
TerryW: porI have seen them
TerryW: I
loutudor: Do you have a chair that rises, Ute?
Ron: They do have a lift cusahion. Check on the KDA web site.
murf: UTE do u have a lift chair?
TerryW: The device I saw sits in the chair seat and helps lift the person up a bit
gary_kc: I feel feet cold not only winter but summer.
MikeG: UTE - I have a lift chair that works pretty good
MikeG: you can put it in a regular chair and use it to help you get up
UTE: Yes, I have an elevatable chair but take a manual wheelchair for her to push me when traveling.
murf: u can now order a lift chair that fits your body
TerryW: I always find it funny when I go to the doctors and he takes his reflex hammer and starts hittin me all over and nothing happens
TerryW: No reflexes
TerryW: LOL
loutudor: What does a chair like that cost, Murf?
murf: u can get power chairs on eBay cheap
murf: $2K with heat & massage
MikeG: here's a link: http://www.amazon.com/Duro-Med-Seat-Assist-Chair-80-230/dp/B000BO9W5O
murf: full recline 0 gravety
loutudor: Murf, hows that new bathtub?
MikeG: be sure to buy it thru the KDA shopping page though
Ron: A decent lift chair is about $800.00.
murf: I would not recoment an I'll be diswcussing on the next chat
yakima kid: Awhile back someone talked about Choline. What ever happened to that? And nuerontonin?
loutudor: Sorry to hear that...
murf: I need a ceiling lify now for $10K
TerryW: The KDA just got a good check from Amazon from people doing their Xmas shopping thru the KDA site
MikeG: GREAT!
yakima kid: Good!
MikeG: I've got my family and friends and neighbors using tht method
loutudor: Can we discuss Yakima's question....Mike, Terry....
murf: Ron a basic cair is $800
murf: LOL
TerryW: My wife uses the KDA shopping page to send flowers to business clients and we get a good check from them also
MikeG: why not? It doesn't cost us anything more and the KDA makes money... win-win...
murf: a good one is $2K
Ron: I think you should let folks know just what you got from Amazon so we can see that it is worthwhile.
TerryW: Choline, Mike, Murf have you heard of that? I am drawing a blank
MikeG: I take neurontin for the dry drowning but not sure about choline
billeric: I tried Neurontin for over a year. Couldn't tell any differance.
murf: not me???
loutudor: What do you know, Murf???
MikeG: actually I take gabapentin - generic
yakima kid: I just don't want to pass up something that might help.
Stan: There is a question on the Forums about Choline. Don't know any more about it.
Ron: I too tried neurontin with no efects. Now I am on naproxen. Seems to help.
TerryW: Here is a link to an interesting research article that I found yesterday http://www.freepatentsonline.com/7655700.html
murf: for dry drounding ... nothing
MikeG: seems to help with the dry drowning - haven't had an episode in months
loutudor: That's good news. Mike!
TerryW: Mike I need that, I get the dry drowing numerous times a day now
TerryW: I will ask my doctor
murf: I've had two in the last few months, I didn't know we could take anything for it
billeric: Ron, does the naproxen help with back aches?
MikeG: some say it doesn't help and others swear by it...
TerryW: I will try it
Ron: Bill--Yes.
MikeG: it helps me sleep too.
MikeG: I take 2 300mg at bedtime
murf: & an Ultram ER
murf: LOL
loutudor: Just be careful with bleeding from overuse of the Naproxen, Ron
yakima kid: Is that over-the-counter?
Ron: Right.
murf: do u bleed Ron?
MikeG: no - Rx
TerryW: Although choline is not by strict definition a vitamin, it is an essential nutrient. Despite the fact that humans can synthesize it in small amounts, choline must be consumed in the diet to maintain health
murf: once a month?
TerryW: I found that online
TerryW: I have read more on it
TerryW: have to
MikeG: never heard of it
Ron: Stomach ulcers can develop if you are on it for an extended period of time. Be careful.
murf: let me know what u learn please
gary_kc: Terry, it is an interesting resarch article. I would like to read after chat. Thank you.
murf: Ron LOL
TerryW: yw gary
Stan: Boy, I feel out of place here. I don't take any of that stuff, don't need it. Haven't had a dry-drowning episode in months. I have a Baileys before bed to help me sleep. No muscles aches. I guess I'll count my blessings.
murf: yes but you will
murf: I laughed 3 yrs ago too
MikeG: Stan, do you know your CAG repeat count?
murf: maybe 5 now
Ron: Murf--how is TJ doing. Last time I talked with him he still had issues with every day life.
murf: really depressed but is supposed to be over here tomorrow
UTE: When I start to feel like dry drownings coming on water sometimes stops it, otherwise I just lose my breath and heat up for a few terrifying seconds
Ron: He is lucky you are such a good friend to him.
loutudor: Good morning, guys!
TerryW: I get the dry drowing now when I bend over to get something and Saliva in the throat hits the trigger point, never had that before
Stan: No, I don't know my CAG repeat count
fergior: Good evening from Madrid
TerryW: HI Fergior
fergior: hi all
MikeG: the MDA will test you for free - you should go get the genetic test. That way you will be under MDA care if you're not already.
UTE: How's the weather in Madrid?
fergior: now 13ºC
murf: Did we ever look at the progression from the onset of sever symtoms?
loutudor: I never heard of dry drowning prior to these chats...good input...what do you drs say about it?
Ron: Sorry but I must go for now. Stay healthy till next we chat. Good bye.
loutudor: Bye, Ron
murf: mine started in 1999
Stan: Not under MDA care currently. No place close by to go. Everything is a min. 2 hr. drive one way.
murf: cya Ron
loutudor: Morning, Paul
UTE: The doctors say the worst that caN HAPPEN IS you'll pas out ... and then get your breathing back
MikeG: I used to have the same problem, Terry. I would wake up in the middle of the night with an episode - very frightening!!!
murf: Me too Mike
loutudor: Ute, what did the dr say to do or meds to take?
MikeG: but neurontin didn't help you - did it Murf?
yakima kid: With me it happens mostly when I'm leaning back and even water hits back of the throat and hits that trigger point.
murf: never uswed it
billeric: Mda gives a good check up once a year. Offered to let me use an electric chair if i would like. They seem pretty good.
MikeG: oh, you shoud try it then
MikeG: my brothers tried it and it helped them
yakima kid: I've had the night episode too!
UTE: I haven't felt the need for meds, so though I lose my breath, as I calm down eventually I'm breathing again
murf: only had 2 boughts
loutudor: Good to hear, Ute
MikeG: it may depend on that infamous CAG repeat though...
loutudor: Can you explain that, Mike?
MikeG: that's the recommended fix, UTE.
yakima kid: There ins't any MDA here in Yakima and travel is getting hared
fergior: My neurologist give me a thratment for feel quit and sleep all nigh wth a drug called STILNOX (10mg.) before go to bed
Stan: My biggest problem isn't dry-drowning, it's certain types of foods that cause me to choke.
fergior: Since take that, never moro sleptwith anxiety episodies
loutudor: What's your nearest big city, Yakima? Sometimes the will come to you...
yakima kid: Seattle is a couple of 100 miles
loutudor: Call the Seattle MDA and ask for help
yakima kid: Will do
fergior: My number of CGA repeat is 43
UTE: Paul, how's the weather where your at?
loutudor: Stan, is it fibrous foods?
fergior: me?
TerryW: You all know you can use the little magnify glass on the chat toolbar to make the text bigger or smaller right?
TerryW: I made it larger, easier to read
TerryW: its in the moddle of the toolbar
TerryW: middle
loutudor: Thanks, Terry...good reminder!
Paul Sramek: Cold feels like 28 F
Stan: It varies. Hamburger is the worst. Steak is ok. I have found it to be more the texture of the food. If it is too dry, I can't eat it, like white chicken breasts.
loutudor: Anybody have a Wii to use when boarded up inside?
TerryW: Breads, Cheese are my worst
TerryW: I have a Wii
UTE: Paul, we were talking about dry drowning and foot numbness today, how are you doing, and what state do you live in?
TerryW: have not used it much
yakima kid: Some high-fibre cereals I have tough time with
TerryW: The bowling is fun, no heavy ball to lift
Stan: No problem with bread or cheese here. Can eat Lasagna, but not spagetti.
loutudor: I like bowling and the tennis is fun...
fergior: Anybody have got a wheelchair electronic calle IBOT?
TerryW: the tennis wears out my arm strength in minutes
Paul Sramek: What is the CGA # ? I live in Dallas Texas
fergior: called
TerryW: Pauls the CGA are genitic markers in a the DNA string, It is the number of time the C, G and A repeat in the string of DNA
loutudor: smaller bites and more chewing before swallowing...that's what we're told
yakima kid: Yes and then evryone is finished and your only half done
Stan: I know that. It takes me over an hour to eat dinner now. Couldn't take any smaller bites or chew longer or dinner would merge into breakfast:}
yakima kid: lol
loutudor: It is a problem...I agree. Or in a restaurant the waiter takes away the other's plates:o
TerryW: DNA Sequence explained http://en.wikipedia.org/wiki/DNA_sequence
loutudor: Thanks, Terry
Paul Sramek: I have tested the IBOT it works well. I have a little elec cart called Travel Scoot found on the web. have had it for about 2 years I can fold it up put in my small trunk & go. It is allso airline approved
Stan: Don't go to restaraunts anymore. They can't prepare food the way I like it.
yakima kid: IBOT--what is that?
TerryW: I have to take a drink with almost every bite of food I eat
loutudor: Terry, you must fill up fast having to do that
TerryW: I take little sips
loutudor: What kinds of foods are most tolerable?
billeric: Probably why your weight remains low Terry
TerryW: I hear that wheelchair that climbed stairs is no longer made, Insurance did not cover it so they stopped making it
TerryW: I guess when it climbed stairs you still had to use your arms on the rails to pull yourself up
TerryW: Lou, Yogurt
TerryW: otsoups
TerryW: soups
loutudor: Do you use protein shakes?
TerryW: no, I should
fergior: IBOT is an electronic wheelchair with 3 gyroscopes end a wheel system tha put you near tha high a nomal people, climb stairs . Only sells in USA and its costs is about $ 30,000-35000.
TerryW: I get Jamba Juices on occasion
yakima kid: ouch!
Stan: I put together a two-page document for food services when I was in the hospital. They kept it on file in case they ever get another patient like me. My family finds it useful too. Yogurt is my backup when I don't see anything else I want, or can, eat.
fergior: Very expensive but is wonderfull. You need a test from Fisioterapist for a week in order if you are able to drive it
TerryW: stan can you post it to the KDA forums?
loutudor: That kind of info would be good for our newsletter..thanks Stan
TerryW: yes
Stan: I can, but is tailored to what I can and cannot eat. It may be different for others. I'll clean it up.
TerryW: thanks
yakima kid: Being below others vision, That's my gripe--everyone standing around talking and I am sitting down out of line of sight.
fergior: search in google for ""IBOT"" and you can see this cpecial chair.
Paul Sramek: I am still able to eat any thing But I have to have water to help get down @ the end of the meal
loutudor: I have a feeling that kind of info re foods would be very helpful for a lot of people
yakima kid: Small bits and careful chewing--that's my MO
loutudor: ...and it's working for you...that's great
yakima kid: and with the water
loutudor: Mike, are you still juicing??
MikeG: oh yes
Stan: The yogurt brings up a good point about food texture. I have no problem with Dannon (preferred), but Yoplait and certain store brands are a problem. Yes, I can tell the difference in taste alone.
loutudor: Thanks, Stan...what is everybody eating for Superbowl fare??
billeric: Mike- has juicing help keep your weight in check?
MikeG: yes, it does
TerryW: Susanne is headed out of town on Business tomorrow so I am alone
MikeG: and I feel like I have more energy with it
TerryW: I may go somewhere , maybe a party
Paul Sramek: My CAG 44;What is AR allele1:
billeric: Always carry a cell phone Terry
MikeG: fruits are really good but I even like all sorts of vegtables juiced
TerryW: I am still afraid of catching something again so I stay clear of crowds so I may not
loutudor: Good reminder, billeric!
TerryW: especiall where there is group food
murf: I don't go anywhere
TerryW: yes Bill, I do
loutudor: bring your own...
TerryW: good idea
yakima kid: Yes, Ihave my cell around my nexk and in my shirt pocket
yakima kid: always
TerryW: I think I am beginning to get OCD on germs
TerryW: just call me Howie
TerryW: LOL
TerryW: :D
loutudor: We are nearing end of hour....any other helpful hints?
MikeG: ok, fellas - I need to go. Stay safe and upright if you can.
murf: I don't go anywhereMike
TerryW: Murf if I was there I would be over to visit alot
loutudor: Murf, have folks in...
yakima kid: Good session--thanks
Paul Sramek: Got to go
murf: huh
TerryW: yes, good chat today
billeric: Good talking with you guys. Stay upright.
loutudor: Thanks everyone for a great chat!!
Stan: Take care. Gotta go work on my Nieces car.
TerryW: take care, Bye
UTE: Terry, get well soon!
TerryW: ty
murf: cya
loutudor: Bye Murf
murf: Tka Lou
gary_kc: A good chat. Bye all.
loutudor: Take care




END CHAT