Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I had just been diagnosed with Kennedy's Disease and had no idea what it was or what to expect. The KDA maintains an excellent website that explains the disease. I found details on symptoms, the cause, and exercises I could do to maintain my strength."

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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