Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"... almost all of the nurses and doctors did not know about Kennedy's Disease. I referred them here. I want to thank the creators of this website."

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Kennedy's Disease Chat Transcript  09-18-2004

Topic:  Open Forum

Host: Murray Williams


Chat Participants:




murf entered the room.
You are in Kennedy's Disease Chat.
There are 2 people in the room.
murf: Good morning
Bruce entered the room.
murf: morning Bruce
Bruce: Good morning world
Bruce: Is the foot fully healed?
Bruce: Chris, how are you doing this late night?
murf: No but it's getting there. How is the weather?
Terryw entered the room.
Bruce: It is a beatiful morning - a little on the cool side. The road is above water again and we have a lot of clean-up to do in the yard.
Bruce: Morning Terry
Terryw: Hi Huys
murf: Good morning Terry
Terryw: I can only stay a bit, we have lots to do today
Terryw: Susanne was out of town all week
murf: Bruce - did Ivan do much damage to you
Terryw: SHe got in an accident last night
Terryw: Lady hit her
Terryw: SHes OK
Bruce: Terry, was she hurt
moseremous is back again.
moseremous: morning all
murf: WOW She is ok?
Terryw: The other car ripped the back bumper almost completely offf, I had to go with rope at 10 PM and tie it up so she could get the car home
Terryw: Her auto roll bars popped up
Bruce: Ivan was kinder to us than a lot of people. It could have been much worse. Branches, leaves, ,etc. are down. The winds were not as strong as expected and the rain was only about 6" in 24 hours. Cindy's sister didn't fair as well, however.
Terryw: Volvo
PA-Paul entered the room.
Terryw: Hi all
Bruce: Morning Chris
PA-Paul: HELLO!!!!!!!!!!!!!!!everybody
Bruce: Morning Paul
moseremous: hi bruce
murf: Morning Paul
PA-Paul: hi
Bruce: Is Ivan visting you Paul
Terryw: Anyone heard from anyone directly hit by Ivan
PA-Paul: Lots of heavy rain
murf: How are our people in Florida?
Terryw: have not heard
John entered the room.
murf: We have one more on it's way
PA-Paul: I thinkl they missed this one but the Mississippy gulf coast got it
Bruce: My sister had her retaining wall collapse next to the house. The garage flooded and a tree fell on the dog house (about five feet from the house. Their bridge was destroyed. But, they made it through it fine.
Terryw: WOW Bruce
PA-Paul: where were they at
Bruce: Near Atlanta.
murf: This is a bad year for storms
Bruce: There were several cells that created havoc and several tornados. They just happened to be hit by one of those cells.
PA-Paul: I hope its no preminotion of the winter to come
Bruce: We have friends in Gulf Shores - right on the water. We haven't been able to contact them yet. It looked pretty bad on the news.
JoeK entered the room.
Terryw: hi Joe
Bruce: Joe, did Ivan visit you guys?
Bruce: Chris, does Australia have hurricanes?
moseremous: yes but we call them cyclones
JoeK: Hi to all ftom wet and blown NC
murf: How are you Joe?
moseremous: only in northern areas of australia
JoeK: My mountain house in Highland is isolated from the outside world
Chuck entered the room.
murf: Start recording the chat
Bruce: As I mentioned, we were locked in for about a day because the road around the lake was flooded. But, Ivan decided to spare us anything too serious. Only about 150 had to move to shelters in the area and only a few thousand lost power. Up until the evening the storn hit, they had projected 12" of rain in 24 hours and 50-60 mph gusts. Neither materialized.
Terryw: I have to go just wanted to stop in.
PA-Paul: Let me be the first to say Pennsylvania/ Eastern Region KDA, had a great user conference in Gettysburg Pa Thanks to Paul Deschamp and his wife.
murf: Take care Terry
Terryw: Susanne will be preparing conference packets this weekend
Bruce: Chuck, is Ivan visiting you also?
Terryw: bye all
MikeG entered the room.
Terryw has left the room.
MikeG: Greeting from SUNNY Florida
Bruce: Mike, you were spared most of the wrath of Ivan this time.
murf: Mike How are you guys doing?
MikeG: Yep - we missed that one - thank God!
PA-Paul: Mike is it really sunny?
Bruce: I have been practicing your hand exercises every day. THanks for sending them to me. Terry is going to put them on the web site soon.
MikeG: sure is - beautiful day
Bruce: By the way, I think the exercises are pretty good.
MikeG: I've got some more - I'll send them to you
Bruce: Thanks
murf: Sunny in Houston too. We missed all of them so far. Touch wood.
Chuck: Ivan visited us yesterday evening and last night with heavy rains, thunderstorms, wind and tornados close by but we were spared any damage. Today is clearing off and looks like a sunny but windy day.
JohnM entered the room.
MikeG: Gonna be a hot day in Houston today, isn't it?
PA-Paul: Bruce will an email or note in newsletter remind people when they get put on web page and where to look
Bruce: I took my dog for a walk this morning (I ride the cart, he walks). It was pretty cool and my left hand didn't work so well afterwards.
murf: 83 right now and will probably hit 90 or so.
Bruce: Paul, I beleive Terry will note it on the web site and I plan on putting a blurb in the forum on where to find them.
PA-Paul: rub it in murf
PA-Paul: Thanks
Bruce: Did everyone see the most recent newsletter?
moseremous: yes
PA-Paul: yea
murf: Very good job!
JohnM: I did see the newsletter but haven't had a chance to look it over good.
Bruce: I felt terrible after hearing the Alan Jinks passed away one day after donating his award to the KDA. I emailed his wife and she sent me some additional information back.
moseremous: any news on the results of the survey
Bruce: The forum survey???
moseremous: the survey we did last year on drugs etc
murf: Yes I think Bruce is responding
PA-Paul has left the room.
Bruce: Ah, that one. It is all done except for one section that needs to be reviewed. We are trying to have a conference call with the person who put it together to finish it up. I hope it will be completed in October.
moseremous: thanks bruce
PA-Paul entered the room.
murf: Paul Having computer problems?
Bruce: We also heard that Karen Greenland will not be doing any further KD research in Australia because her grant has ran out. She hope to finish the KD survey before winding down.
PA-Paul: CockPit Tbl
moseremous: first i've heard of any research in aust
PA-Paul has left the room.
Bruce: She wrote: > > I wanted to let you know that today is my last day in my present position. Unfortunately, my research funding has run out. I am trying hard to continue research in Kennedy's disease but we have been suffering from a severe lack of funds for the past few years. We are hoping to get more funding so that I can continue my research, but for the time being at least, we don't have enough money. Research funding in Australia isn't great..

I will be continuing some work on Kennedy's disease for the next months at least (in a different lab) and I will be finishing up our publications based on the KD survey very soon. I'm sorry that I didn't manage to finish compiling the publication. It has been a bit of a rough year for me as I have had two deaths in my family and I have had an injured back for several months.
denny entered the room.
murf: The KDA BOD are discussing helping her
Bruce: Morning Denny
denny: Good morning.
murf: Good morning
Bruce: Ohio State pulled it out last week in the final two seconds - what a finish
JohnM has left the room.
JoeK has left the room.
murf: It's pretty quiet out there??
JohnM entered the room.
murf: No Ohio fans?
PA-Paul entered the room.
moseremous: hi murf
MikeG: Go Bucks ... go Bucs
duane entered the room.
JoeK entered the room.
Bruce: John, I see the Hurrican gods decided to spare Tampa this time around.
murf: Hi Chris Hows your weather mate?
moseremous: sunny and dry
denny: I'm a buckeye fan.
JohnM: We headed for Biloxi and turned around and came back home.
moseremous: well not sunny it's 12.51 a.m. sunday
Bruce: A wise decision
MikeG: I wonder how Keesler made out?
murf: We are sending some of our people down under to do some word near Mamba
murf: work
moseremous: what sort of work murf
JohnM: I haven't heard too much about problems in Biloxi.
murf: We realy appreciate you staying up to chat
JohnM: We'll see how it looks in November.
MikeG: Yeah, they were on the 'good' side of it.
PA-Paul: yes How do you do it
murf: Underbalanced drilling for Santos
MikeG: Panama City on the other hand...
moseremous: heavy work eh
JohnM: I was wondering that also Paul.
PA-Paul: Yes John I am in bed by 10 PM
murf: I would like to hear how all are people are doing in Florida
moseremous: i only stay up cause i love you guys
JohnM: I'm lucky to make 10 PM.
PA-Paul: Sure
PA-Paul: you must sleep all day before the chjat
murf: Chris - I'm office bound so I'm support only.
JohnM: Punta Gorda, North Port, and Orlando people came out OK.
moseremous: i'm only 41 years old and still getting around okay but will sleep in tomorrow
PA-Paul: you need a shorter name so I can address you directly
moseremous: mose is okay
PA-Paul: AOK
JohnM: Mose, you appear to be the BABY in this crowd.
moseremous: no, you are just all old
JoeK: I am please that I sold by last real state in Port Charlotte last year
murf: Good come back Chris LOL
JohnM: Joe, where are you now.
Bruce: I believe John Coakley said he had 300 people at his annual hoe-down. He didn't get to bed until 6 am. I told him he is a far better man than I am.
murf: We are!
John has left the room.
Bruce: I like your sense of humor, Chris
JoeK: Greensboro, NC
PA-Paul: murf or bruce is there any place on the KDA that we can look to see the number of DNA repeats for anyone who has shared theat info
JohnM: I like a warmer climate.
murf: John had a great time from what he said. Lots of KD'ers
PA-Paul: that
John entered the room.
Bruce: I am considering am electric wheel chair. Any comments on good brands, models, accessories, etc. and what not to buy?
John: I am 53 and was diagnosed a year ago. Is this late for KD onset?
murf: Paul - that was part of our study but I have a friend here with higher repeats than was recorded
PA-Paul: bruce you know that MDA provides up to $2000 toward it
Bruce: Paul, some of that info is in the personal stories, but more info will be made available with the survey results - hopefully published in October.
Chuck: We know all had a great time at John's Hoe Down and he certainly had a beautiful day/evening. He really knows how to throw a party. We were there and Ron Wiker and his entire family is all of the KD'ers. Peter and Betsy Glick were trying to work their schedule to make it but guess that didn't work out.
JohnM: Bruce, I have a Golden Aliente and am VERY happy with it. It cost me $74.40 after Medicare and my other insurance.
Bruce: Yes - thanks Paul
Bruce: John, I haven't heard of that brand. Thanks
JohnM: My CAG was 45.
PA-Paul: mine was 53
Bruce: Mine is also 53
murf: Bruce - Don't get a leather type seat. I have an Invacare exterra GT. It allows me to go fishing with my grandaughter and travel off the beaten path
Chuck: There was a couple at the Gettysburg Meeting from Poughkeepsie, NY that was just diagnosed. His name was Will and Anna Edel. They seemed to really be hungry for information and seemed to really enjoy the entire get-together. I believe he will join KD Association.
JohnM: My scooter is also a Golden Companion II and my power recliner is also a Golden.
murf: We did find out that the repeats increase over time
Bruce: Thanks, Murray. I have a cloth seat on my scooter and like that.
moseremous: sorry murf, do you mean the cag repeats can alter in an individual?
murf: Yes
PA-Paul: Hey ALL guess I will go now its storming pertty good and I just saw light flicker cant believe PC did not go down but not taking any chances BYE
PA-Paul has left the room.
JohnM: Has anyone been retested after being diagnosed?
Bruce: Yes
Bruce: One year later
moseremous: no, i thought cags stayed the same will reing dr on manday
murf: We've heard that someone has been tested twice and there was an increase in CAG repeats
moseremous: that's doctor on Monday
JohnM: I'll have to check on that also.
Bruce: My cag number went from 48 to 53. The doctor said that was unusual and could be the results of the lab (+/- results).
John: Bye
murf: I have not been retested but probably will request it when I visit my Neuologist next month
John has left the room.
MikeG: Bruce - did the same lab do the testing both times?
Bruce: No
MikeG: maybe the problem...
MikeG: I'd like too see what the same lab would test at the 2nd time.
Bruce: I have my CPK count checked every time they do any blood work. Does anyone else track their CPK?
moseremous: no noy yet
murf: I will not be able to test in the same lab either, first one was in Amsterdam
MikeG: no - all I know is that mine is quite high... don't know the number though.
murf: I don't either Bruce
moseremous: i think mine were flown to usa initially. don't know if they test here
Bruce: I also have the CPK count from my brothers with KD. Mine went from 850 steadily down over three years to 280. During this time I was doing my exercises every day - twice a day.
JoeK: Bruce = What is CPK count?
Bruce: It is my understanding that CPK reflects the muscle wasting that is taking place. The higher the number, the greater amount of burnt (?) muscle tissue.
Bruce: A normal CPK count is somewhere around 200.
JohnM: Joe, thanks for asking.
LouLou entered the room.
Bruce: Morning Ron
LouLou: Good morning to all. Sorry to miss the firsthalf of the chat.
murf: Morning Ron
denny: Hi LouLou.
denny has left the room.
Chuck: LuouLou, did you change your name from Butch????
Bruce: Besides "no" leather seats, are there any other thoughts on accessories? I am considering adding an electric seat that can be raised 7 inches. Anyone have that option?
moseremous: lou lou sounds butch
LouLou: Just to let yopu all know that the regional meeting was a great success. Thanks to Paul.
denny entered the room.
murf: Good discussion Ron, you can read it on the site when Terry posts it.
LouLou: No I didn't change my name, just my log-on name. When they knew who I was, they wouldn't let me on the chat. LOL!!!
murf: Great job Paul!
LouLou: You all missed a great time at Coakley's Hoe Down. Great food and fellowship.
murf: We try to keep out the rif raf LOL
JohnM: Bruce, I have leather seats and have no problem with them. I use and Up-lift Seat Assist rather than a rising seat. Much cheaper.
MikeG: Bruce - that is a very good point about exercise. As long as one doesn't over do it.
LouLou: Thanks Murf. Caller ID is wonderful.
murf: I find I sweat in my seat if I'm sitting for long periods.
JohnM: I'm afraid that exercise isn't VERY high on my priority list.
Bruce: Thanks for your thoughts on the chair. Well, I need to run in a couple of minutes (or walk slowly, anyway). Take care of yourselves ... be healthy, safe and happy. We'll talk in a couple of weeks. Does anyone have any subjects they would like to see addressed? If so, drop me an email at This email address is being protected from spambots. You need JavaScript enabled to view it.. Thanks
moseremous: take care bruce
murf: Take care Bruce
MikeG: later everyone - I gotta run too.
Bruce has left the room.
murf: Chat recording will end in 10 minutes.
LouLou: I loaned my chair to my neighbor. He had his right leg amputated just below the knee. When he sits for long periods of time, he sticks to the chair and can't slide very easily.
murf: Bye Mike take care
MikeG has left the room.
LouLou: So long Bruce.
murf: My problem too Ron
JohnM: I can see why sweating might be a problem but I don't sit on the leather.
murf: The seat part of the chair should be cloth
LouLou: Sorry to have missed alot of the chat. What was the main topic of discussion? John--Does your up-lift seat wear your leather seat?
denny has left the room.
moseremous: main topic was the weather
duane has left the room.
murf: Ron- Bruce is looking for suggestions on a new electric chair
LouLou: Anna Lea and Chuck--It sure was nice to spend time with you all at the meeting and at the hoe down.
JohnM: Ron, it really doesn't do too much harm. I haven't had them for very long yet.
murf: and yes we talked about the storms
LouLou: I sure feel for thoes of you in Florida. What a mess.
murf: Chris - thanks for hanging in till this late hour!
JohnM: Murf, I don't like to call them "Electric" chairs. LOL
moseremous: wouldn't miss it
murf: I was wondering if anyone would catch that LOL
moseremous: lol
LouLou: John--I thought adding an up-lift might cause excesive wear to your chair seat.
JohnM: I think the chair will wear out before the seat.
LouLou: I don't want an electric chair. I wouldn't know when Mary Lou would throw the switch. LOL
moseremous: must get some shut eye. take care all and be happy
moseremous has left the room.
murf: I am looking at replacing my batteries in my chair at the moment
LouLou: So long moseremous. Stay healthy till next we chat.
murf: Bye Chris
JohnM: Murf, MDA does a good job in paying for upkeep.
JoeK: nice chat to all joe
JoeK has left the room.
LouLou: Murf--Does MDA help with the cost of your batteries?
murf: $500 per year I hear
JohnM: MDA paid for batteries and foam tires for my scooter.
JohnM: $500 is correct.
Chuck has left the room.
LouLou: Has anyone had any unusual health problems lately?
JohnM: I'll be leaving ya all also. Til next time.
murf: I'm having problems saving the chat, Can someone please capture this?
JohnM has left the room.
murf: Ron?????