Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The site is essential for a source for the general public, whenever one encounters the diagnosis of Kennedy's Disease and has no idea what that might be. There is simply no other source as easily available to the public."

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript  05-07-2005

Topic:  Open Topic

Host: Terry Waite


Chat Participants:



murf: Morning

LouLou: Good morning. Seems everyone is sleeping in this morning. Hi Dave. Where in Ohio? I live in Lancaster Penna.

Dave-OH: In the Cincinnati area

LouLou: Hi Murf. How are you?

murf: I'm doing ok, you guys?

murf: Dave are you new?

LouLou: Dave--have you been on the chat before?

Dave-OH: Yes. I've read a few of the transcripts

Dave-OH: Yes to being new here

murf: Do you have KD like us?

Dave-OH: The doc thinks I do - still waiting for the dna results

LouLou: Dave--do you have Kennedy's and when were you diagnosed?

murf: Well, there is lots of support here if you do

LouLou: Who did your DNA test?

Dave-OH: Athena diagnostics in MA

murf: We're (some of us) going on a cruise late November out of Galveston for 5 days if you are interested.

billeric entered the room.

LouLou: Boy it is really slow this morning from the time you send your message until it appears on the screen.

murf: We like to get together once a year to talk and have some fun.

murf: Morning Bill

billeric: Good Morning folks from sunny Phoenix

LouLou: Hi Bill

billeric: What's our topic today?

murf: So that's where it is, in Phoenix! No sun in Houston this morning.

LouLou: Dave--do you have any questions about KD which we might be able to help you with?

murf: No topic Terry is the host but I'll save the chat for him.

murf: I hope everything is ok in Coarsegold

LouLou: Same here Murf--hope there is alot of understanding.

murf: What do you want to talk about?

murf: Cruises?

billeric: Do any of you guys take Neurontin? I quit taking it about 2 weeks ago and I don't feel quite so good. Guess I will start taking it again.

denny entered the room.

LouLou: Terry said he has fallen ALOT lately. Hope all is ok. Especially with Susanne having the broken wrist.

billeric: Hi Denny

denny: Good morning.

murf: I never took it but I do take extra B12

murf: Morning Denny

denny: Hi.

LouLou: Bill--I used to take neurontin but stopped and started taking naproxin.

LouLou: Hi Denny.

murf: Ron do you notice a difference?

denny: morning.

billeric: My new neurologist put me on creatine. I have taken it for about a month. I see no improvement in strength etc.

LouLou: I think so--wouldn't know unless stop taking the naproxen. Seems to help with pain and clenching.

murf: Bill - mine did too but I stopped taking it last year I noticed no difference.

LouLou: I also take 2 extra stregnth tylenol. Doc sait tylenol doesn't build up in the system.

murf: I was also scared of liver damage with Creatine.

billeric: murf, that helps me as to what I am going to do.

murf: Is that for pain Ron?

LouLou: How can we be scared of anything. We are already dealing with Kennedy's. Yes Murf. Seeems to work.

Dave-OH: anyone have high cholestorol - what do you take for it?

murf: I do Dave and take atenolol 100mg for it.

billeric: I take Lipitor Dave. So far liver tests o.k.

murf: oops thats high blood pressure

murf: I take crestor for high cholestorol

Dave-OH: I was on Lipitor for a little over a year, but when I saw a doc about leg pains months ago, he said to stop that til we know the cause.

murf: I got acid reflex too (what a mess!)

murf: LOL

murf: and a broken foot again!

LouLou: My wife, Mary Lou has high cholesterol and is on Lipitor 80 MG with zetia 10 mg. Brought her cholesterol down to 114. Great!

billeric: There is a herbal remedy for high cloresterol called Beta-sitosterol complex. Available at health stores.

murf: does it work?

LouLou: Murf--Broken foot--When?

Dave-OH: my neurologist said I might want to avoid lipitor because of the possible muscle side effects

murf: The Thursday before last. So I can now hobble around

LouLou: Same foot? How bad is it?

billeric: Not sure murf but I read it in a very reputable health supplent. If you don't need any more medicne it may be worth a try.

murf: This is #4 in one year. third one on the left foot.

LouLou: Shoot Murf---give it a chance to heal.

billeric: Murf, do you have osteoporosis?

murf: I don't think so but I know we brake bones easier now.

LouLou: Murf--Old grandad must be taken in moderation. LOL

billeric: I agree, I broke an ankle 18 months ago. Never should have happened.

murf: Our bodies are giving out but we're not. LOL

murf: My knee gave out and down I went on my left leg. Buggered up my knee too.

murf: We just need to take it a little slower these days.

murf: I used to say I'll slow daown or sleep when I'm dead but I think I'll start now. LOL

billeric: I am not sure what happens to me. Seems like I just cave in for no reason. Worst yet, you have no idea it's coming.

murf: That's what happens to me, I was on the ground before I knew my leg gave out.

LouLou: Hey Terry--Where are you? Most times when we fall it is because we are stressed or unusually tired.

LouLou: Do you use a cane? Did you have it when you fell?

billeric: I try to use a cane outside but have not used it inside. That's when it happens to me.

murf: I was coming out of a restaurant at lunch

kelly entered the room.

murf: Morning Kelly

LouLou: A cane doesn't help you walk but it helps you to keep you from falling down.

kelly: good morning all of my kd friends

billeric: Morning Kelly

murf: I stepped down off a curb 6" and did not lock my knee.

kelly: hi bill

murf: Cane was not on the lower section

kelly: u should try and get patrick in the room here bill? lol

LouLou: Kelly--What happened to you? You were on the chat about 10:25.

kelly: yes

kelly: when did the chat start??

LouLou: 10:30 EDT.

kelly: oh ok

billeric: I almost missed the chat. Arizona does not go on day light saving time.

murf: hows the weather in the great white north?

murf: Bill - so it's 10:10 in Arizona now?

billeric: No, 8:10

murf: o, 10:10 in Houston CST

kelly: it;s 9 15 am here in sask

murf: Cold?

kelly: warming up here now

murf: 71 already in Houston

kelly: wow!!!!!

murf: I don't think it will get much passed 80 today

billeric: I didn't know Susanne broke her wrist. How did that happen?

murf: She feel off her horse

LouLou: I went to NIH on Monday to talk with Dr. Sharu Chen. She is great. I also invited her to one of our chats, whenever shew can.

murf: Her horse bucked her off

billeric: Ouch!!!!

kelly: what's dr. chen;s speaialty?

LouLou: Kennedy's Research.

murf: Great Ron we need to get more reseachers and doctors involved in these chats.

kelly: oh ok cool good stuff lou

kelly: welll thanks to the kd ass i got brochures for the gp;s and neurologist;s here in sask wow! they were amazed

murf: We need to send out a call for donations again and grant another +/- $50,000 to a researcher

billeric: I expect Terry is feeeling Susannes mishap. My wife needs both hands to grab me by the belt to get me off a chair quite a bit.

murf: Ron - we've got to bring this up at the next BOD meeting

LouLou: I told her she would get alot of questions from us, but also would gain alot of knowledge from us. She didn't know that some women show symptoms of KD and are not just carriers.

LouLou: Is anyone having unusually severe problems? I know that warmer weather helps all all.

LouLou: (us all)

murf: Just a tough time staying on my feet. LOL

denny has left the room.

Terryw entered the room.

Terryw: hi all

murf: Morning Terry

kelly: yes that's correct, lou lou, the weather affects all of us kd pple

Terryw: sorry I got my dates messed up

billeric: Hi Terry. We was worried about you.

LouLou: Just tell the folks whereever you are that you are looking for a four leaf clover. We all could use some LUCK.

murf: That's ok we'll send you the chat in a minute

Terryw: I am ok

murf: Is everything ok Terry?

Terryw: thanks murf

Terryw: Yeah murf I just got the dates messed up

billeric: Sorry to hear about Susanne, Terry.

LouLou: How is Susanne?

murf: How's Susannes arm?

Terryw: Her arm hurts, she has to go back on Mon and have them re-do the cast

Terryw: hi dave, you are new to the chat I se

Dave-OH: hello

kelly: TERRY? you have to be espicially careful when you mount your horse. a fall could be quite dangerouse for you

murf: I bet it hurts

Terryw: yep, I know kelly I think of that all the time

Terryw: I am getting a helmet

kelly: good thing terry yup

LouLou: I didn't know she was in a PLAY---I hear she is in the cast. LOL

Terryw: I need football gear really

Terryw: LOL Lou

kelly: lol yeah no poop yup lol

LouLou: Oh well! I tried for a laugh.

murf: You're a killer Ron LOL

billeric has left the room.

Terryw: Finally some sun today

murf: ok was going on? were is the Sun in Houston?

billeric entered the room.

Terryw: we have gotten so much rain this year for here

Terryw: 50 inches

Terryw: normal is 30

LouLou: Dave--Any questions which we can help you with about KD?

murf: You won't have to worry about brush fires this year, right?

Terryw: yes murray even more this year because of all the growth

Terryw: they changed the brush clearing from 30 ft to 100 ft around houses

murf: oh never thought of that

murf: ok I'm off to save the chat