Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"As a mother with a son who has KD, I appreciate those of you who are so dedicated to informing the public of this rare and difficult disease."

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Kennedy's Disease Chat Transcript  08-05-2006

Topic:  Open Forum

Host: Terry Waite

Chat Participants:




TerryW: Hello

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.

Dart!: Craig.

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

TerryW: hello

MikeG: howdy

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

Duane: no

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

MikeG: oooch!

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: 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.

Duane: balance?

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?

TerryW: Liberty

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

TerryW: after

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

kellyC_: yeah....

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.

MikeG: bye

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

TerryW: lol

kellyC_: 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

TerryW: flutter

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 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!

fl-don: //10

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

ernie: bc

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

fl-don: ohio

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?

kellyC_: suffer's

Gopher: good

Duane: I go the end of this month

fl-don: i go in sept

Duane: to NIHGHH

Duane: NIH

Gopher: Is it your first time to go to NIH

Duane: yes

fl-don: anyone going sept 19/20?

fl-don: who fell at study?

Duane: ?

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

kellyC_: yup

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 wish