Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

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Kennedy's Disease Chat Transcript  06-26-2004

Topic:  Open Forum

Host: Murray Williams


Chat Participants:



murf entered the room.
Bruce entered the room.
Bruce: Good Morning
murf: Good morning Bruce
Bruce: It looks like a weak turnout so far...
murf: It's early yet
Bruce: Are you still afloat down there? I understand there was some flooding.
murf: I'm ok I bought above the 100 year flood plain
murf: Lots of water this year
Bruce: I have to leave about 10:50 my time this morning. I have someone coming over at 11:00 and I need to get ready for them.
murf: ok
Bruce: I have always been thankful that we seem to always buy on high ground wherever we live.
murf: There is no agenda for today but I thought I would talk about aids for us
murf: Chairs ramps etc
Bruce: When our lake occasionally floods (we are on the ridge above it), we can't get out for maybe a day, but it is far better than those living on the lake and wondering if they are going to flood.
Bruce: Good idea. As I become less mobile, the aids come in handy.
murf: Last years conference I put together a spread sheet of companies and web site addresses
Bruce: Are you still buried at work?
Bruce: Yes, I remember. That was a good idea.
murf: Like you wouldn't believe
murf: I'll have to travel to Mexico next week for about 2 weeks
Bruce: 2 weeks - WOW. Where are you going down there?
LouLou entered the room.
murf: I don't want to be traveling on the 4th
murf: Good morning Lou Lou
murf: Villahermosa
Bruce: I remember my last trip to Mexico City. I was the only one that was extra careful about what I ate and was the only one that didn't end up with Tonto's two step.
murf: LOL
LouLou: Hey guys--Guess who is LouLou. BUTCH!!!It is the only way I can get in the chat.
Bruce: Do you speak the lanquage?
murf: Hi butch what gives
LouLou: I thought you guys had caller ID and wouldn't let me in the chat.
murf: We got to get that fixed. Did you talk to Terry about that?
Bruce: Butch, I though maybe you were taking some hormone therapy and your voice changed.
murf: LOL
LouLou: I've been having this trouble for the last couple chat sessions.
murf: I speak enough to get by, I have a long haired dictionary
murf: //6
stevefu64 entered the room.
Bruce: Hey Steve
stevefu64: hi bruce
murf: Morning Steve
stevefu64: morning murf
stevefu64: u too lou. lou??????
LouLou: I did talk to Terry about getting into the chat. I spent one complete session trying to get into the chat. Most times I could get into the chat if it wasn't our regular Sat. chat. Strange--
Bruce: Butch, we really miss Lancaster County - especially the fresh vegetables and meats.
LouLou: Hi Steve. How are you? I'll bet you miss the grreat smorgasboards.
murf: Maybe Terry has to wipe you out and you can re-register
stevefu64: oh yeah
Bruce: Shady Maple is still are favorite grocery shopping place.
stevefu64: you must be new here hey,lou lou???
murf: I hate grocery shopping
stevefu64: yep me to
murf: Steve - LouLou is Butch
stevefu64: pain in the butt lol
LouLou: Bruce--We just went to Shady Maple not long ago and they are making another addition to the place.
stevefu64: lol ok
Bruce: Murray, this place was great. I loved shopping there because everything was fresh and the meats were local. It was something that I looked forward to just because of the atmosphere.
murf: Sounds great I love fresh food
Bruce: Butch, that place grows and grows and the people just keep on coming. Is the additional to the grocery store, shops or restuarent?
murf: Just not all the walking
LouLou: Shady Maple has the greatest breakfasts. You can eat whatever you want and as much as you want.
LouLou: The restaurant is the next expansion.
billeric entered the room.
murf: Saturdays I usually make a 5 gallon pot of Killer chilly
murf: Start Chat
Bruce: Sounds good, Murray
murf: Morning Bill
Bruce: Is it TexMex Chili?
JohnM entered the room.
murf: O ya... Lots of peppers
Bruce: Hey John
murf: Morning John
billeric: Good Morning fellows. I sure have a time getting hooked up to the chat.
JohnM: Morning All.
Bruce: It sounds like it will cure what ales yah
LouLou: Hi Bill! Murray maybe you can make your chili for the next convention. I'm all for that.
murf: I haven't had any problems but others do. We need to fix that
billeric: Think I need some!
Bruce: Bill and Butch, send a message to Terry again asking for his help. Something must be wrong someplace if you two continue to have problems.
murf: Butch - It takes me 6-7 hours to get it right
FL-DON entered the room.
billeric: Probably old age,
murf: Morning Don
Bruce: Hey Don
JohnM: Hi Don.
LouLou: IDon't worry Murf. We have plenty of time. It is the only thing we have plenty of.
murf: I'm sweating just thinking of some
FL-DON has left the room.
JohnM has left the room.
LouLou: Is the chili "killer hot" or only hot?
murf: Don is having trouble too
JohnM entered the room.
FL-DON entered the room.
Bruce: John, are you having any trouble getting in?
Bugsy entered the room.
Bruce: How about you Don?
murf: It has a delayed reaction, makes you sweat but can be eaten
stevefu64: hey good morning Bugsy
Bugsy: good morn
murf: Morning Bugsy
JohnM: Bruce, I just clicked on the wrong button. No other problems.
Bugsy: morning murf
Bruce: Okay, just checking
murf: Must be old age
murf: LOL
FL-DON: we had a nice picnic with 5 KDA'ers last weekend here in Tampa
Bruce: Great
murf: Great any chilly?
stevefu64: lol
FL-DON: yup, lots of chilly
Bruce: How about red beans and rice?
stevefu64: yuck i hate chilly
LouLou: Hey Don--How come we didn't get an invitation?
FL-DON: caregivers fed us well
murf: red beens but no rice
FL-DON: u all r invited anytimje
FL-DON: had an okra cassrole
Bruce: That sounds good
FL-DON: just got back from wading pool
Bruce: Did you ever notice how we all respond positive to food?
LouLou: It is really great that that many KD'ers get together just to shoot the bull and share experiences.
JohnM: I think we all ate tooooooooo much. Everyone brought something and we had to try it all, TWICE.
stevefu64: you gentleman ought;ta try my fried rice//2
murf: Any one having problems getting around?
stevefu64: nope not yet for me
Bruce: It sounds like we should have a cook-off contest
murf: I'm in
billeric: Just make sure I use my cane. Man, those falls are something else.
FL-DON: get around well with cane and scooter if needed
JohnM: No problem getting around as long as I have my wheelchair, scooter, or power chair.
murf: Travelling kills me. I can't take my chair
Bruce: My scooter is my salvation at places like WalMart and Sam's Club. Otherwise I get too worn out on those concrete floors.
billeric: Are you past the cane stage, John?
murf: We can rent chairs in San Diego!
stevefu64: when can one expect? to start havin major problems with gait? as iam only 41 yrs old
FL-DON: yup, also football games and daytona 500
Bruce: Travel used to wear me down also, Murf. It is tough on the body and the airports don't help much.
JohnM: Murf, I don't even carry a cane any more. I just ride my scooter or chair.
Bugsy: well by have to go just wanted to see whta was up
stevefu64 has left the room.
Bugsy has left the room.
Bruce: Steve, give yourself another ten years.
murf: I ask for a chair and most airlines are good about it
FL-DON: do u have a scooter murf?
stevefu64 entered the room.
murf: Take care Bugsy, Steve
stevefu64: i got booted for some reason
murf: I have a chair but it wieghs 167 lbs
murf: 6 wheels and does 7 1/2 mph
Bruce: Well, as I mentioned, I have to run. We have company arriving in about ten minutes. You guys take care - stay healthy and happy. Also - remember July 10th. We have Dr. Paul Taylor as our special guest on the chat.
murf: Thanks Bruce take care
JohnM: I guess you don't lift it too often, do you murf?
billeric: Bathrooms are scary for me. If there is only a regular stool I really sweat getting offf of it.
LouLou: I was on jury duty here in Lancaster. I couldn't believe that they didn't have habdicapped bathrooms. There is an old and new courthouse. The old courthouse is not handicap friendly. I thought all government buildings must be HC accessible.S
Bruce has left the room.
Bruce entered the room.
Bruce has left the room.
murf: John - I have a lift for the van
murf: Butch - must have been tough
FL-DON: i have van with HarMar lift for scooter
JohnM: Bill, I don't even try to sit on public toilets. I get my job done before I leave home.
murf: Mine is a Bruno curbsider
JohnM: Mine is a Bruno also.
murf: Me too John
FL-DON: i avoid regular height toilets if at all possible
billeric: I try John but sometimes a "special" need arrises
murf: I'm luck my office has a handicap bathroom
JohnM: There's NO was I could get up off a regular height toilet.
murf: I have to rock forward but try not to go to far LOL
billeric: I have a traveling stool riser now so when we visit for a couple days I take it.
FL-DON: we head for las vegas in 4 weeks
LouLou: Because of 9/11 security in the courthouse is pretty rigid. For lunch you had to exit and enter an area that had 3 steps about 11 inches high without a handrail. You guessed it. I didn't go to lunch.
murf: Don good luck!
FL-DON: me2 murf
FL-DON: vegas is very accessible
LouLou: Don--Where in Vegas will you stay?
murf: We have concret barriers up around our building in Houston as of yesterday
JohnM: Bill, I have a riser that I take when we travel also.
FL-DON: this time i will stay at Westward HO as we get 3 nights free. usually stay at Excalibur
stevefu64: well gentleman i have to go u guys take care all
murf: I think we are expecting something
stevefu64 has left the room.
FL-DON: cya steve
murf: Bye Steve
LouLou: So long Steve.
FL-DON: what building murf?
murf: our Halliburton head office
FL-DON: yeah, good target for terrorists
murf: Don I loved the Excalibur! great dinner show!
LouLou: I guess the barriers are for security.
murf: Yup. Truck bombs
FL-DON: murf, spent most of my time in poker room. only do shows when wife insists
JohnM: It's really a shame that we have to take these precautions now.
murf: We've lost 43 guys so far
murf: Makes it tougher for us to travel but I don't minde the extra security
LouLou: That is terrible--You go to work and you are a target for terrorists.
murf: We can thank osama for that
murf: My boss doesn't want me travelling if I can help it anymore
FL-DON: are any of you goping to san diego this year?
murf: I will be
JoeK entered the room.
murf: Already registered
FL-DON: good 4 u
murf: Morning Joe
FL-DON: i enjoy the conventions
JohnM: Murf, sounds like you have a very understanding Boss.
billeric: I will go Don. Also am on the planning committee.
LouLou: Murf--are you still traveling abroad as much as you were last year?
murf: He likes my work and wants to keep me around and safe
JohnM: Hi Joe.
JoeK: Good morning from Nc
murf: Butch - not as much anymore
FL-DON: gm joe
billeric: Hello Joe
murf: Mexico is relatively safe
murf: They look after me well
FL-DON: anything new on the research front?
murf: Joe - Hows the weather?
LouLou: You never know. These "a" holes want to take your head to make a statement.
murf: We have 2 project in the mid east and I worry about our guys all the time
billeric: Lots of stuff on the stem cell situation but My neurologist said we are a long ways off of helping us already affected.
murf: Don I believe Terry is posting updates on the web site for both our grants.
LouLou: Has anyone been to visit our doctors since the convention?
FL-DON: i c MDA doc every 6 months
murf: I think John c has
FL-DON: all 3 of us KD'ers in sun city center, fl see the same MDA doc
JoeK: Sun is out in Greensboro 73 degrees ------------ Highlands 68 degrees
LouLou: Did you see the research being done on the most powerful mouse. Just think what that might do for us. We could develop muscle mass and gain stregnth.
murf: That's great Don!
FL-DON: should be in 90's here in fl
murf: There is hope for us!
FL-DON: see where LouLou?
JohnM: 90's here in Florida EVERY day.
FL-DON: right, 90's till oct
murf: It'd hot and wet in Houston
billeric: I am not bragging about Phoenix this time of year!
JoeK: That is why I left Miami
FL-DON: luv Tampa
FL-DON: hotter in NC
JohnM: I can handle the HOT weather a lot better than I the COLD.
LouLou: Don--Not sure where, but the research is from stem cells being injected to achieve the results.
FL-DON: thanks lou
murf: Everyone remember that next chat we'll have Dr. Paul Taylor
FL-DON: who is he, should we know him?
billeric: agree John. Especially when you thrw in the ice and snow.
JohnM: Sounds like stem cells be be what will eventually help us.
murf: We awarded him one of our $25,000 grants and he will be talking about his research
FL-DON: thanks for info
JohnM: I meant MAY BE //3
FL-DON: i keep reading different things about the stem cells. god only knows
JoeK: Is any usnig an alternative medican doctor
LouLou: I know that in the last couple of months I have beenexperiencing quite a loss of stregnth. I don't understand why. I use the scooter to do things around the yard that I was able to do without use of the scooter.
FL-DON: lopulou, i have experiences a gradual (slow) decrease in strength for 20 years
murf: Butch - my stregnth comes and goes. I guess I'm hanging in
FL-DON: but i still mostly get around with a cane
billeric: I experiance losses of strength in streaks also LOU. Not sure why it happens.
murf: I need my cane or chair. lost without them
JoeK: I am stronger in the AM
nando entered the room.
JohnM: I seem to be hanging pretty steady on the strength aspect.
billeric: Me too Joe.
nando: hi all
murf: Some days are better than others
billeric: Hi nando
murf: Hi nando
nando: I am Fernando from Madrid (Spain
LouLou: It is strange how having the same disease has so many different effects on individuals. I guess we are glad to have the difference.
murf: Great! how is the weather in Spain?
FL-DON: hello my friend Fernando
nando: Today too much hot. 40ºC
billeric: I can notice bicept muscle loss. Lots of skin hanging that wasn't there a year ago.
nando: hi Don how are you?
LouLou: Hi Fernando--How have you been? Are you staying healthy?
FL-DON: good here fernando. how is your family?
nando: yes, the winter was sweet
murf: You travel lots Fernando
nando: no, I stay at home everytime
LouLou: Bill--Muscle loss is the name of the game. Stregnth goes with muscle mass loss.
JohnM: We don't do much traveling any more either.
LouLou has left the room.
nando: I am just ready to go my coast home for all summer
murf: Sounds great
murf: Will you be able to chat there?
nando: Go to Mediterranean sea in front to Baleares islands
JohnM: I guess you have snow birds in Spain the same as here in Florida.
billeric: Sure is easier staying home but that's giving up one more thing. No easy answer.
nando: Sea temperatures are now pver 27ºC. Very good for us with KD
LouLou entered the room.
murf: Getting in and out of the water must be tough
JoeK: It is the unknown that keep us from getting out
LouLou: It must have something I said. I was kicked off the chat.LOL
murf: I hear you Joe
murf: LOL
billeric: Not sure I could get out of the water anymore.
JohnM: My wife is afraid of me ending up in a Hospital far from home.
murf: Me either Bill
billeric: I know what you mean John.
murf: The beach would kill me
nando: We have in the beach very places with special wheelchairs with float and two monitors for assistance , so i can take longtime baths
murf: Thats terrific!
LouLou: I still walk-run in the pool. I try to do it every day. I have an above ground pool which is 53 inches deep. it is great exercise.
nando: No, tha baths are very goods . warm temperatures of water and small waves not more than half meters
murf: We really need to get out more but it is tough
murf: Water is the best for us
billeric: It's a struggle Murf but we need to force ourselves or lose the option.
LouLou: Murf--How is Karol? She had quite a time last year.
murf: I agree, if we don't do it now we may not have the chance tomorrow.
nando: salad water is very good. I feel better the next winter after pass twoo month taking salad bath in warm temperature water
FL-DON: LouLou, we have a 3 1/2 to 4 1/2 foor deep wading pool here at the community hall, and i try to do 1 - 2 hours a day
LouLou: What is salad water? Salt water.
FL-DON: water is 90 degrees
nando: ok salt. M english is not strong enough
murf: Better that our Spanish LOL
LouLou: That's OK. Just wanted to be sure.
FL-DON: i think daily exercise if we can do is helpful. so does doc as long as we dont overdo
FL-DON: u have good english fernando
FL-DON: wish i could speak spanish
JohnM: I don't do much of any kind of exercising. I figure it just speed up the deterioration.
murf: We are so lucky we can chat with those from other countries
billeric: Wish my spanish was as good as your english nando.
nando: Don , in Florida you can learn a lot of spanish
murf: Me to John
FL-DON: well, i must go. take care all and good luck in your endevours., bye
murf: Bye Don take care
billeric: By Don.
FL-DON has left the room.
JohnM: Bye Don.
LouLou: So long Don. SAtaqy healthy. Kill them in Vegas.
murf: Chat is over but you can stay as long as you want