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Kennedy's Disease Chat Transcript 05-07-2005
Topic: Open Topic
Host: Terry Waite
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?
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
LouLou: Bill--I used to take neurontin but stopped and started taking naproxin.
LouLou: Hi Denny.
murf: Ron do you notice a difference?
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: 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: 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
kelly: warming up here now
murf: 71 already in Houston
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
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
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 chatEND CHAT