Archives - 2015 and Older Transcripts
Kennedy's Disease Chat Transcript 08-05-2006
Topic: Open Forum
Host: Terry Waite
Dart!: G'morning Terry
TerryW: I am just waking up
TerryW: 7:30 here
Dart!: It takes a bit, doesn't it? Your at the coast?
TerryW: I thought Murf would be here already
TerryW: Yes, in Calif
Dart!: You have some very faithful friends on board.
TerryW: I already went and fed the horses and cats
Dart!: No horses here - just cats.
TerryW: Even a flake of hay is hard for me to lift now
craig_h entered the room.
TerryW: Morning Craig
craig_h: good morning
craig_h: how are y'all ?
Dart!: Sorry about that, Terry - I know what it is like to be easily put off balance. And a good morning to you, V
TerryW: I am doing so so
fl-don entered the room.
TerryW: hi don
craig_h: hey dart
fl-don: hin terry, all
TerryW: We are finally cool here in Calif. all the heat went east
MICH entered the room.
fl-don: how r visits to nih by other kd'ers going?
TerryW: I am not doing the trial
fl-don: long ride 4 u terry
TerryW: letting others plus the travel
craig_h: I went about 10 weeks ago, drove up
MICH: Good Morning Guys, I'm not doing the trial either
fl-don: i did the ohio state test in mid 90's
Dart!: Hopefully, those who take the trial are encouraged by it.
MICH: Anyone else not doing the trial besides Terry and I?
Duane entered the room.
TerryW: I am encouraged just hearing about it
fl-don: nfl starts next friday, my favorite time of the year
TerryW: Hi duane
Duane: hello terry
fl-don: how do i turn the doorbell off?
PaulaG entered the room.
TerryW: turn speakers down LOL
TerryW: I am not sure don
TerryW: hi Paula
PaulaG: It's Mike - I just set Paula up as a user.
TerryW: do any of you remember Denny in the chats
PaulaG: I'm gonna go login on my system now.
TerryW: Sad news last week. He passed away :(
TerryW: Heart attack
craig_h: oh no, how old was he?
TerryW: I am not sure I would have to look that up
MikeG entered the room.
fl-don: gm mike
Dart!: Sorry about that - but it happens even if one is not ill.Death is a hard fact of life - not in the original plan!!
TerryW: denny mostly just logged in and watched the chats
TerryW: Has anyone here had problems with Kidney stones?
craig_h: I haven't
TerryW: I passed another one last week and they say I have 3 more in both of my kidneys
Gary_KS entered the room.
TerryW: last time was 2 1/2 years ago
fl-don: <-- no problems with kidney stones
TerryW: hi Gary
Gary_KS: Good morning, all. Gary Uchiyama joined from Kansas City.
MikeG: Terry, my brother Jim has had kidney stones.
fl-don: gm g
Dart!: A person sure does have to be made of good stuff to handle ssickness.
TerryW: I wish I knew what kept causing them
Gary_KS: Hi Terry.
MikeG: need to drink lots of water
TerryW: I drink about a gallon a day
Dart! has left the room.
MikeG: how do you get them removed? Ultrasonic?
fl-don: didn't we have a chat about the nih study a few weeks ago? i cant find it
TerryW: Pass them
TerryW: I have not had any real large ones
TerryW: yes don, I have not posted that transcript yet
TerryW: I was down sick
fl-don: ty terry
Dart! entered the room.
TerryW: Do you all know why they say drink cranberry juice for kudney stones & bladder infections
Dart!: I lost you for a little bit - what a bummer!!
TerryW: it changed the PH of urine to a lower PH. not so acid
TerryW: easier on system
craig_h: it's the only way they can sell cranberry juice :)
TerryW: I found a good brand
TerryW: 100% juice
MikeG: Terry, why does this chat hosting system keep losing my profile selections? Seems I have to set it up every time I log in...
TerryW: no sugar or perservatives
TerryW: A&L Cranberry delight
TerryW: Mike I can ask the tech guys that and get back to you. send me an e-mail reminder ok?
MikeG: no one else seems to have that problem...
TerryW: I had my prostate checked last week. WHat fun....NOT
fl-don: i had problem mike, but somehow figured out how to save profile
TerryW: it is ok , no problems
fl-don: can't remember how i did it
Duane: does anyone have constant lower back pain? I thought mine would go away but after 4 weeks, not any better.
MikeG: I'm working at Tropicana and can have all the juice I can drink - for free!
Dart!: Are you experiencing pain with your stones Terry? I understand that some magnezium and Calcium [Calmag] helps, though too much mag can weaken bones, they say. Everything in moderation!
MikeG: too bad it's so fattening though
TerryW: Duane, is it during the day also? dumb ? huh?
craig_h has left the room.
TerryW: Duane, lower back pain can be caused by weak abdominal muscles sometimes
TerryW: it causes the back to curve because the abs are weaker then the back muscles
TerryW: I have that problem
Duane: I think that may be it. Although the problem started when I fell in my garage.
TerryW: I try to do light worouts on my abs
MikeG: Duane - I have lower back pain - just about constant.
TerryW: Duane did you get checked by a doc
TerryW: you could have damaged a disc
MICH: My garage seems to be a favorite place to fall too... makes for quite a few bruises
Duane: I'm considering accupunture. Might help, sure can't hurt
TerryW: I found that I fall easier when going down an incline not up
Duane: yep MICH, I don't have any problems falling, in fact I definitely know how to do it
Gary_KS: I need my driver's lisence renewal in August. Does anyone know the process for handicap person like me? I can't stand up from chair level and can't walk either. I drive eletctric scooter on public road. So I don't want to give it up.
TerryW: DUane you need to get the back checked by a doc
MikeG: Same here - I fell in my garage and hurt my tailbone bad.
TerryW: I am not sure Gary
Duane: My appointment is next week. I kept putting it off, thinking it would get better.
TerryW: Duane you need to go
MikeG: maybe if we can't take the pain we should stay out of the garage.
Duane: yep. :)
TerryW: DId you all see the news on the website on the new Libert Cane?
Duane: no what's the news
TerryW: John Coakley JohnC designed a new cane
MikeG: yes, I'd like to have one. Does anyone here have one?
TerryW: check it out agter chat
Dart!: Wasn't he a gunslinger from California, or Texas?
TerryW: John had a prototype at the last KDA conference
MikeG: I think he's dropped the price, hasn't he?
Dart!: Sorry, that was supposed to be a delete action - not send.
TerryW: I think so, also from each sale $10 goes to the KDA
MikeG: good deal
TerryW: Don, any Hurricanes yet your way?
fl-don: no canes so far for me and mike g. but will have some 4 sure
TerryW: the weather has been very strange this year so far. I think it is going to be a bad year for them
fl-don: is the cane covered by mediare?
TerryW: don, I would call or write john on that. I am not sure
fl-don: will do
fl-don: gonna talk 2 john c tonight
TerryW: when you talk to him tell him that I have had it up on the website for a week now.
TerryW: I sent him an e-mail about it but he may have missed it
kellyC_ entered the room.
fl-don: ill ask him to send u a response
TerryW: Gary how is it going for you these days?
TerryW: Ki Kelly
kellyC_: having pc problems good morning terry
TerryW: Paula I still need to get back to you on your e-mail you sent me
TerryW: sorry for the delay
kellyC_: Well made it in the chatroom anywho lol
TerryW: PC problems, Ahhhhhh, You buy a brand new system and they even have issues
kellyC_: yup.. crazy just like our world lol
TerryW: I think it's made that way to keep them in business
TerryW: Don, I know you are big into football. Did you used to play
Gary_KS: Terry, It keeps hot summer weather and I don't have much change for my muscle weakness.
TerryW: My muscles like hot weather
TerryW: It's amazing hopw much better they work in the heat
Duane: mine too, better than cold.
fl-don: played for grade/high school, and for marines in san diego. scrimmaged the chargers when they were getting strarted. got our butts beat
TerryW: fingers especially
MikeG: well, I've got to go - chat with you folks later.
TerryW: bye mike
fl-don: bye ike ttyl
Gopher entered the room.
TerryW: hello gopher
MikeG has left the room.
PaulaG has left the room.
Gopher: Hi...lost track of time and then had trouble with my password..fixed now
TerryW: Don, I only played when I was young, 6th grade flag
TerryW: Our team was called the Cowboys, I was #22 I can still remember
fl-don: at one time, was the baddest guy in the valley, now if i get into valley, i can't get out, lol
fl-don: 33 herew
Gopher: Roger has had a cold/cough for two weeks. Really had trouble breathing. Has this happened to anyone?
TerryW: I could never play basketball
kellyC_: i was the baddest dude to in my high school yrs lol
TerryW: Yes Gopher I had that about 4 months ago
kellyC_: kd is hard the lungs!!!
TerryW: when he breathes does it make a gurgling sound in his lungs
fl-don: when i get cold, i get really sick. have lots of trouble breathing. use a nebulizer now, much beter now.
Gopher: Yes...gurgling andlack of air like an asthma attack
TerryW: Gopher has he seen a doctor
TerryW: he needs to get on that right away with his doc
Gopher: Yes, the doctor in Mankato ordered predisone which did help
TerryW: very important
TerryW: he needs to get his lungs clear
Dart!: Did Murf not have a set of exercises, including one for breathing improvement?
kellyC_: yes for sure gopher
fl-don: i breath in 'muco mis't and 'albuteral' using my nebulizer
Gopher: Doctor won't give a 66 year old man a nebulizer..to hard on the heart
TerryW: Dart, check out the KDA exercise page
kellyC_: where is murf anyways lol
fl-don: i am 62
kellyC_: he usally always on here lol
TerryW: Not sure on Murf - MIA
kellyC_: oh ok
fl-don: a young 62//1
JoeK entered the room.
TerryW: Hi Joe
kellyC_: //1 //1 43 here
Gopher: And Roger is a young 66 too
fl-don: i would check with pulminary doc
Gopher: I wish I would have had a movie to show doctor what it looks like
JoeK: 74 here
TerryW: what what looks like
MICH: I just turned 60... let's here it for the 60's!
Gopher: A recent appointment to the U of MN showed his throat has a deformed muscle...not seen on other Kennedy patients??
TerryW: 60's great music
kellyC_: gosh you fellow's are quite healthy for being inur 60's as for me god only knows what kind of shape i'll be in when i hit 60
Gopher: 60's the beginning of rock and roll
fl-don: we hired "platters" 2 perform here earlier this year
ernie entered the room.
kellyC_: deformed muscle's??? in the throat gopher?
TerryW: in the 50's I hung out at the station with my dad, he was a DJ and I hung out in the studio and even got to talk on the radio in L.A
fl-don: naw, 50's start of rock and roll, i wuz there
TerryW: i mena 60,s
MICH: throat muscles probably part of problem for us KDer's with dry drowning
TerryW: yes Mich
fl-don: dry drowning, been there, dont that
kellyC_: as for me my tongue is wasted good already
kellyC_: @43 yrs old???
Gopher: MICH, that makes sense, he always says dry spot and then comes the problem with breathing
Gopher: OOOs dry drowning..explain
kellyC_: hey ernie what province you from in canada
TerryW: dry drowning is when your airway closes
MICH: Gopher, dry spots, hot spots, cold spots, dry air, cold air, spices.... anything can cause it
kellyC_: oh ok ty...
TerryW: all of the sudden
Dart!: THOSE symtoms don't sound good - I don't think that we should subscribe!
Gopher: yes! that's it.
kellyC_: yeah i had the dry drowning alrady to a few times scary,,,,,
TerryW: I cannot count how many times it happens to me
TerryW: 3-4 times a week
kellyC_: the bad scenrio is that i still smoke tobaco//10
MICH: My doctor always said don't worry about dry drowning... the worst thing that can happen is you'll pass out... and then start breathing again
ernie: question for terryw: how effective is Lupron in treating KD?
Dart!: I have never heard of 'dry drowning'.
fl-don: first few times i had dry drowning, thought i wuz packing it in
TerryW: yeah mich LOL, but what if you are driving
Gopher: That is what we have been told too, but passing out is scary!!
JoeK: I keep a slice of bread and a bottle of water to clear throte when needed
Gopher: driving..very scary...stop car fast!!
TerryW: Never heard of that Joe, Bread usually trigger it for me
TerryW: Hi Ernie
TerryW: where are you from
TerryW: do you have KD
kellyC_: i often wonder? if throat spasms are the same as dry drowning are they???? anyone?
TerryW: yes kelly
fl-don: i think same
ernie: BC, see my previous question
kellyC_: phewwwwwww...... ok ty terry
TerryW: I see ernie
TerryW: I missed that
kellyC_: how old are u Erine from BC
TerryW: I must have been typing, I look at keyboard
fl-don: dont think there is any treatment for kd
ernie: Is lupron a proven med for KD?
TerryW: not proven, yet
kellyC_: nope nothin is at this point intime as far as i know
fl-don: is i remember, luperon just stopps the body from producing testosterone
ernie: How safe it is?
fl-don: they used luperon in the 'ohoi state study' in the 90's
ernie: Does testosterone weakens the muscles?
fl-don: safe, but made me extremely weak
JoeK: Terry, I sleep in a lift chair so I can clear throat as need. Has any arrangement been made in Atl. for special equipement been made?
TerryW: ernie, research shows that testosterone aggravates the disease
fl-don: this is all from memory, which aint what it use to be
kellyC_: Hope fully after the KD trial @ the NIH will prove helpful with us kd'ers
Gopher: Is anyone having god results from new trial drug?
Duane: I go the end of this month
fl-don: i go in sept
Duane: to NIHGHH
Gopher: Is it your first time to go to NIH
fl-don: anyone going sept 19/20?
fl-don: who fell at study?
Gopher: How many are in the study?
TerryW: I am not sure if people in the trial are supposed to discuss it with others in the study. may throw off results
kellyC_: over 50 men and alot more on the waiting list
fl-don: heading to the pool for exercise. cya all later, bye
TerryW: results/progress I mean
TerryW: bye don
kellyC_: oh ok terry sorry about that
Gopher: Great....will wait for results and not ask questions
fl-don has left the room.
TerryW: well folks I am going to be ending the chat logging here. you can continue to chat if you wishEND CHAT