Kennedy's Disease Association

"Every few days a baby boy is born with this DNA defect"

Kennedy's Disease Chat Transcript  03-06-2004

Topic:  KD and sleep issues

Host: Terry Waite

Chat Participants:

Terryw
PA-Paul
BUTCH
FL-DON
Bruce
Gary_KS
Duane
Murf
JoeK
MICH


BEGIN CHAT

BUTCH: Hi guys. Hope everyone is doing fine.I registered 2 weeks ago. It says that my info is already being used. I am using the same info that was on the mda chat room.

Terryw: So how has everyone been?

Bruce: Terry, when do you plan to provide the information on Dr. LaSpada's research findings? This weekend?

Terryw: BUTCH I am not sure why it says that, I don’t think it likes the :;characters also

murf: Yes, Will we be posting to the web site?

Terryw: I think so Bruce, we got it yesterday and were gone until 10PM last night

BUTCH: So how do I delete the info and re-register on the KDA chat.

FL-DON: good here terry. did Susanne get the blonde jokes?

Terryw: Don, she has not seen them yet, she’s feeding the horse now

Terryw: Our Cat had kittens yesterday morning also

FL-DON: horse, u gotta b kidding

Bruce: How is the horse doing?

Terryw: busy weekend start

Terryw: What Don? LOL

Terryw: yes horse

Terryw: Now we have 15 cats

Bruce: And no mice...

Terryw: 4 indoor and 11 wild

Terryw: that we feed

Terryw: One of the wild ones gave birth

Terryw: So onto the topic, Who has problems getting a good nights sleep

Terryw: I know I do in the early morning hours

Gary_KS entered the room.

murf: I sleep pretty good if I use my CPAP machine

FL-DON: we had to put our old dog down 1 1/2 months ago. I bought Judy a new dog 2 weeks ago. this dog don’t know what the word walk means. runs everywhere!

duane: I can go to sleep at 9:30 and wake up 3 - 4 times during the night. Restless legs and breathing problems.

Terryw: My back & chest muscles seem to tighten up and get really sore and have pain, If I get up and do some stretching it goes away and I can get back to sleep for a couple more hours

Gary_KS: Good morning! Gary Uchiyama from Kansas.

BUTCH: Terry--no wonder you have trouble getting to sleep. You are supposed to count sheep, not cats. LOL...

FL-DON: since I started taking neurontin, I sleep like a baby. use to have lots of problems sleeping. I do get up 2 - 4 times a night to peeeeee

MICH: I had problems as wife left TV on and it woke me up at 4 a.m.... then since my feet were numb and calves were tight... went out to sleep on lazy boy... also I moan every night

Bruce: Good morning, Gary

Terryw: Hi Gary

FL-DON: gm gary

FL-DON: terry, this chat site is a great improvement from the MDA chat site

murf: If I don't use my machine I wake up every hour or so.

Gary_KS: How are you everybody! It is nice sunny day in Kansas this morning.

Bruce: I am a light sleeper. I wake up around 60-90 minutes after finally falling to sleep (usually 30-60 minutes). I then wake up about every 60-120 minutes and stir.

Terryw: I went to the store the other day to buy some Quinine Sulfate that John-C had recommended but they no longer sell it over the counter. They told me its by prescription only now

MICH: Murf, what your machine called??

Terryw: the FDA put it back on the prescription list

JoeK: FL-DON What is neurontin for

FL-DON: I usually nap during the day for short periods

Terryw: Some over the counter meds are being put back on prescription only list because drug dealers are using them in creation of illegal drugs

Terryw: drugs

FL-DON: joe-k, MDA doc prescribed neurontin for liquids in throat. sleeping just a nice side effect

PA-Paul entered the room.

murf: It's a CPAP machine; it forces air into your nostrils at low pressure. It stops snoring and most times you sleep through the night.

Bruce: I usually have a more difficult time if the legs are sore (ache).

Bruce: Good Morning, Paul

PA-Paul: Hi All cant login if you are not awake

PA-Paul: hi Bruce

murf: You need to contact a sleep center for a sleep study. Your doctor can set this up for you.

Bruce: Another good turn-out this morning

murf: Morning Paul

PA-Paul: Hi Murf

FL-DON: we have a slope in back of home going down to creek. the other day I was on my scooter and it started to tip, so I aimed scooter down the hill. ended up in a large bush. had a hell of a time getting out of bush and off scooter, and up hill to flat ground. when Judy saw I was not hurt, she busted out laughing.

BUTCH: I usually sleep like a log. My wife says I SNORE like I am sawing that log.

Bruce: That would have been a good one to watch, but not participate in Don

murf: I have my pressure (set by the sleep center) to 9" water pressure and have a humidifier because of the dry Houston air LOL

Terryw: Don my doc was going to prescribe me meds to dry up liquids that pool in my throat but he said I would have a harder time eating, so I opted not to go with it

PA-Paul: Terry I am not sure if you are aware but if a person fails his login. It seems that the box forgot password is gone.

Terryw: I noticed that Paul, but if you refresh the page it comes back

FL-DON: terry, I just take eating slow, with liquids often

Bruce: My MDA doctor always questions me on how well I sleep for some reason

Terryw: bug in program

FL-DON: turnout better here then the MDA site. wonder why????

PA-Paul: Thanks terry But I believe that is what has caused most login problems people have had

murf: I don't fall asleep in meetings any more and have more energy in the mornings.

FL-DON: I am retired now. when my body wants to sleep or nap, I just let it

Bruce: I mentioned this before, but sleeping on a foam wedge has really helped me. I haven't woke up gagging or choking in a couple of years.

MICH: Another thing that kept me awake was... stress?? ... after 6 months with no vehicle to transport my Jazzy ... had lift installed in a 5 year old GMC Yukon... happily brought it home only to find letter in mail box from County District Atty rejecting my workman’s comp claim after waiting 50 days... reason for not covering.... I have preexisting disease (MD) and fall frequently... it was the 1st time I'd fallen on the job

FL-DON: foam wedge in back of neck Bruce?

Terryw: when I sleep with my head propped I choke much more often

Bruce: Murray, my brother uses a CPAP and swears by it also.

Bruce: It is a 12" high wedge that is about 30" wide and 40" long. It elevates the back, shoulders and head. I still use a pillow on top of the wedge.

PA-Paul: As for the topic of today I too was told I needed a sleep study so I got the necessary referrals and even had to get a chest xray (not sure of connection) but then I showed up at the center and was hooked up to about 25 wires every where a lot of them on my head in my hair then I was told go ahead and go to sleep HA

murf: Mine is a REMStar. It's small, compact for travel but makes you look like a space allein when you're sleeping.

Terryw: Paul I will ask them about correcting the login box to see if they can do anything

Bruce: I saw my brother with the mask on and laughed...

duane has left the room.

Terryw: I am going to be back in a few, havve to do something. I will remain logged in

murf: I have the mask that just seals the nose with two probes and comes down from my forehead.

PA-Paul: I do know people who use the CPAP machines and they swear by them.

murf: I can tell all day long when I don't use it.

Bruce: About 18 months ago I hosted a CPAP chat with an expert on the subject. The transcripts might still be around if anyone is interest.

duane entered the room.

duane has left the room.

PA-Paul: yes murf thats what my doc said when I complained about tired all day long I was a person who could not go back to sleep after I was up and saw the sun

duane entered the room.

murf: I would highly recomend all KD'ers check with their doctor for a sleep study if you have truble sleeping.

Bruce: Eric, how cold is it today in Utah?

PA-Paul has left the room.

BUTCH: Terry--It sounds like you start the chat recording. What happens if you re not on the chat on any particular day. Does it start automatically? Hey Duane--why not stay for a while.

duane has left the room.

Bruce: Terry is away, but I will try to anwer. At the bottom is a 'save' disk icon. Whoever is moderating the chatroom has to save the chat before logging off.

MICH: its still below freezing at nite and we had snow fall during the day yesterday in Salt Lake but hopefully into the 50's in a few days??

murf: Are we having problems? or was it something I said LOL

FL-DON: what is snow????????????????????????

Bruce: When the chat is saved, you can send the file to Terry for publishing on the site.

Terryw: I am back

BUTCH: Duane--where did you go?

Terryw: BUTCH no I or someone has to start the logging manually

Bruce: It appears Duane and Paul are being kicked off

PA-Paul entered the room.

murf: Was it something they said?? LOL

PA-Paul: Hi All don’t know what I did but all of a sudden you were all gone...

Terryw: Bruce I was thinking it would be better if 2 of us log the chat just in case one of us gets knocked out of chat then we lose all previous text

murf: Wecome back

Bruce: Duane is still gone

Terryw: as a safegaurd

Bruce: Good Idea - I'll attempt to save also today.

BUTCH: Our chats used to start at 7:15 and end at 8:45 California time.

PA-Paul: Is anyone here using any of the voice type programs????

PA-Paul: don’t all answer at once

murf: We can chat any time now BUTCH.

FL-DON: <------ no paul

Bruce: I have it installed and have played with it at times. It works pretty well, but not perfect

Terryw: no paul, I used to

PA-Paul: thanks

PA-Paul: Bruce which one do you have

Bruce: My program required training, but still made mistakes that had to be corrected

murf: Paul I still have a copy of ViaVoice that I don't use if you would like me to send it to you let me know

Bruce: The software that came with XP Home

Terryw: I had my voice program trained pretty well, them my PC blew up and I lost the program and did not want to spend all the time retraining the voice program over again

BUTCH: Paul, I tried it also. The more you use it the better it gets. I used AOL's point and speak.

PA-Paul: I tried two of them but had trouble doing the training so I wondered who had good luck with which one

duane entered the room.

Terryw: I used Via Voice and it worked good

Terryw: Hi Duane

PA-Paul: thanks

duane: hi. lost connection. couldn't get logged in

Terryw: Be careful not to close that KDA chat login page windo or you will knock yourself right out of chat

BUTCH: I make mistakes typing--I make mistakes talking---which is the easiest?

Terryw: Oh that's what caused it

PA-Paul: both

murf: BUTCH - I have that problem all the time LOL

Terryw: Joe, yo are so quiet

Terryw: you

Terryw: Gary you still here also?

PA-Paul: guess its the subject SLEEP lol

Gary_KS: Yes, I am reading the chat. Thank you!

Terryw: I hate to go outside and then come back in and try to type when its cold, my fingers don't work when cold

Bruce: Mine also

murf: I thought we may have put some people to sleep.

Terryw: LOL

FL-DON: zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

Bruce: The other day it was just 50 degrees and it took some time to get the left hand functioning correctly again

duane: mine too. fingers arms legs

Terryw: I can sleep real good for about 6 hours then my body starts to hurt

FL-DON: move south Bruce

Bruce: I did, Don

Terryw: from hips to neck

FL-DON: not far enuf

murf: Agree, that's what I do. Moved to Houston

Bruce: Maybe move further south?

FL-DON: fl Bruce, 2 sun city center

JoeK: It is hard to use keyboard on this laptop. I am recovering from a fall tha crack a bone in my back,

Terryw: I feel like my torso & chest muscles are not holding up my skeleton and it causes pain

murf: I can't go much further LOL

Bruce: I love the sun. It warms the muscles and bones and I feel like a different person

Terryw: I see Joe

Terryw: The weather here is finally starting to turn nice

PA-Paul: same here in PA

duane: by 3:45 am in finally get out of bed. can't get comfortable

Terryw: Same Here Duane

Terryw: but I do stretching and then lay back down

Terryw: it helps

murf: I can't sleep more that about 6 hours but I think that is just years of training.

FL-DON: age also murf

Terryw: Yes Murf, sleep habits do form and the body remembers

murf: That too!

MICH: Does anyone else find the cold or even walking a short distance will effect speech... particularly long sentences??

JoeK: I sleep OK just have to pee 2 plus times a noght

duane: I take 1.5 mg of Mirapex each night for legs.

Terryw: MICH, my speech is affected by tiredness

Terryw: thats about it

Terryw: and alcohol

duane: mine too. almost like mush mout

Terryw: LOL

murf: MICH - Yes, when it's cold my lips don't work so good.

duane: mouth

Bruce: As I mentioned, I was at the MDA doctor this week and he had two interns try to get my knees, elbows, feet and hands to involuntarily react to the rubber mallet. The once intern struck my elbow so many times it is still sore. The two interns finally gave up saying that they couldn't get any reaction. //13

duane: I know my boss used to think I was hittin the bottle :)

PA-Paul: thanks Terry Good By ALL

Terryw: Bruce you can make money that way betting them

Terryw: :)

Terryw: Bye Paul

PA-Paul has left the room.

FL-DON: u r ready for trash heap like the rest of us Bruce

murf: I have not had reflex for years Bruce.

FL-DON: bye paul

murf: Bye Paul, take care

Bruce: I continue to tell them they won't get a response, but they continue to try.

Terryw: WHat do those reflex actions actually do for us

Terryw: and what does it affect when we lose them

Terryw: ?

duane: especially having problems with alergies in the am. Stopped up and choking. Anyone else?

Terryw: hmm

murf: Makes you want to grab the mallet out of their hands, doesn't it?

Bruce: The way I felt afterwards - YES

FL-DON: do u take "contact" med duane?

Bruce: It has been four days and the elbows are still sore.

Terryw: I have bad allergies Duane, but don’t get the choking from them just itchy scrathy throat & roof of mouth, and Itchy wter Eyes & runny nose sometimes

duane: Just makes it hard to swallow.

Terryw: yes

Terryw: A bit harder

duane: hard time coughing up the "gunK"

MICH: don't know if its allergies but I cough alot, like right now with dry throat... and after meals... and can easily send food or even dry or moist air down the wrong wind pipe

Terryw: I used to take Dimatap extend-tabs but they made me suicidal (no joke)

duane: I know what you mean. same here. I got choked earlier this am just swallowing.

Bruce: My doctor asks me to practice breathing deep and coughing - to maintain the strength in the lungs

Terryw: for allergies

duane: good itea.

Terryw: I only felt that way when I took them

Terryw: strange huh

murf: Moist food or lots to drink when you're eating is the only way I can get it.

duane: I take generic Walmart actifed. works good during day but jittery.

BUTCH: I've noticed that using black pepper on food many times will make me cough. Especiallyfresh ground pepper.

duane: me too. but i'll suffer through the cough. gotta have my fresh pepper !

BUTCH: How are the plans going for the next conference?

FL-DON: time 4 me to go. great chat room. cya all in 2 weeks, bye

Terryw: Bye Don

FL-DON: sleep tight

murf: Bye Don

BUTCH: So long Don--Stay healthy.

Terryw: BUTCH, plans are moving ahead, getting groundwork laid

FL-DON has left the room.

Terryw: we have a great commitee

murf: Good to hear Terry!

duane: In San Diego?

murf: I know it's a lot of work!

BUTCH: Good--Many hands make the work easier.

Terryw: Conferences are always a big task though as Murray & John-C found out last year

Terryw: Yes Duane

murf: I'm looking forward to sunny California this year

duane: Sounds great. Saving my pennies. Planning to attend.

murf: Bruce - Will you be able to attend this year?

Bruce: A question for the group: Is there any subject you would like to see discussed in the next session (March 20)?

Bruce: Uncertain, Murray. I would like to attend with my brother, but for now we are just talking.

Terryw: Yes Murf, It will be nice to have one on the west coast to allow the people on the west that could not make it to previous meetings to come this time.

MICH: I will do everything I can to save up for San Diego as it's only about a 12 hr drive from SLC and would love to meet some of you... haven't heard from Bill or Shakely from AZ in the chats for a while??

Terryw: Only a few minutes until official transcript logging stops. You can remain in the room after that to talk for however long you wish though.

BUTCH: I guess it is about that time, so I will say good bye and stay healthy till next we chat.

murf: We should alternate east & west coasts every year

Bruce: Take care, Ron

duane: Energy Conservation , Hints and tips for "honey do's" around the house. :) Lori says hello to everyone.

JoeK: bye to all

Bruce: HELLOm Lori

Bruce: Take care, Joe

murf: Have a good weekend Ron

JoeK has left the room.

BUTCH has left the room.

duane: Speaking of honey do's ...gotta go. Take care all

Terryw: MICH, check with Jet Blue for flights to ontario Calif and then rent a car, the flights are cheaper and its only an hour drive from there to San DIego

murf: I'm going to have to go too, nature is calling

murf: Bye all

murf has left the room.

Terryw: John Wayne Intl Airport

Bruce: Well, I need to walk (ride) the dog before the BOD meeting, so I will also sign off until the 20th. Stay safe, healthy and happy.

duane has left the room.