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  12-03-2005

Topic:  Open Forum

Host: Murray Williams

Chat Participants:



murf entered the room.

Bruce: Good Morning, it is a cold rainy day in Georgia.

murf: morning Bruce

Bruce: How are you doing these days?  Has things settled down at work?

murf: A little cloudy here but looks like it might be a nice day

Bruce: We are supposed to be cold and rainy through Monday.

murf: I have a few weeks for this last deadline and think I might get it done.

Bruce: Of course, I could still be living in Minnesota.  Their high today is 14 and the low 8.  Tomorrow it is supposed to be a high of 8 and a low of 4.  BURR!!!!

murf: Then I would be taking on the world anymore. to much for us old farts

murf: That's way too cold for me

Bruce: That is why we moved from Minnesota and I said I wouldn't move back.

murf: opps - I wouldn't be taking on the world

Bruce: John had dinner with Paul Taylor Thursday evening.

murf: I don't know how some of our people can handle it

murf: I just talked with John, he said it was great

Bruce: The stock market looks like it will finish on an up-tic.  I hope so.  It started out looking good and then fell flat.  These last few weeks have been positive.  I need a good finish to stay ahead of plan.

murf: Tell me....I have a lot invested at the moment and looks like I'll do very well this year now

LouLou entered the room.

murf: We need to talk offline about fundraising

Bruce: Morning Ron

murf: Morning Ron

murf: We're thinking too small I think

Bruce: I agree.  It is too important of a subject.  I believe we should have a conference call on the subject.  We just don't have enough time during the BOD meeting.

LouLou: Good morning all. Hey Murf--we would just be getting back from the cruise.

murf: I agree we need to be adding a few 0's to the annual donations

LouLou: I still would be trying to get over my hangover, LOL

murf: I didn't think you went

MICH entered the room.

murf: Morning Mitch

LouLou: NO!!! If we went. Sorry to confuse you Murf.

MICH: Good Morning Bruce, Murf, and Lou Lou

murf: I mean Eric

Bruce: Good Morning Utah

Bruce: How are things at work these days Eric?

LouLou: Hi Mich. How is your weather? We are getting ready for snow here in Penna.

murf: My secretary and her husband was the only ones to go on the KDA cruise

Bruce: Did they have a good time?

murf: Their just docking this morning in Galveston. I haven't got a phone call yet so I guess they did.

MICH: We've been in the snow season for about a week... gave me just enough time to have cement poured for a small retaining wall to put up a vinyl fence... took two months with a shortage of powder for the cement.

Bruce: Ron, is the yard all cleaned up after falling the tree?

murf: I guess you wouldn't have made it home that quick would you ? Super Ron!

PA-Paul entered the room.

MikeG entered the room.

murf: Morning Paul

Bruce: Morning Paul.  Long time ...

doughboy entered the room.

LouLou: Bruce--you will be missing alot of snow storms this year. If it gets too warm in Georgia--come back to PA. Yes Bruce. It was pretty easy.

Bruce: Morning TJ

murf: Morning TJ

MikeG: Hi everyone

murf: Morning Mike

Bruce: Morning Mike

PA-Paul: Boy you can say that Again

doughboy: good morning everyone

Bruce: How are things going for you Paul?

LouLou: Hi TJ and Mike.

MikeG: we have a wonderful looking day going for us in Florida

doughboy: Hey Lou what's up!

Michael17860 entered the room.

Bruce: Not up here, Mike.  It is raining and cold in northern Georgia.

LouLou: Good to see you all on chat again.

PA-Paul: either am away doing something or just plain FORGET because by 10:30 est i am usually involved with something'

MikeG: that's why we moved down here

murf: Morning Michael

Bruce: Morning, Michael.  How are you?

Michael17860: Hi  all

doughboy: Well, I'm finished with my Christmas shopping, hope ya'll are too!  My wife and I also celebrated our 30th anniversary Monday.

Bruce: Congratulations !

murf: Shopping...what's that?

Michael17860: Came back from vacation on the Mississippi and got a bad cold.

murf: New Orleans?

doughboy: Hey Murf, I'm working my katootie off this morning, I've got some people putting my christmas lights up on my house.  Thank you, Bruce.

PA-Paul: Tomorrow is our 40th anniversary and our 3rd  sons 20 birthday

LouLou: Do you guys go to stores that have scooters in store, for handicap use?

murf: TJ- send them over when their done.

PA-Paul: hey Lou yes i do when i can

doughboy: Well congratulations PA - Paul

murf: Congrats Paul~!!!!

doughboy: I take my scooter Lou

PA-Paul: Thanks I think ha

MikeG: I bring my own...  their's is too slow for me

kelly entered the room.

MICH: I do got to stores with scooters including WalMart but if not a scooter store I take my Jazzy power wheelchair

Bruce: I just bought two shower bars.  They are the type that have a suction cup and clips on each end to fasten them to the shower stall walls.  I needed something for balance and for entering and exiting the shower.  They work great.  No tools required.  They hold a substantial amount of my weight and are very secure.  If I travel, they can be installed in any bath or shower and removed easily.  The price was also right.

LouLou: Great Paul--40 years is quite an accomplishment.

murf: I hear you Mike

doughboy: You got that right Mike, boy is it agravating to use theirs.

Michael17860: Was suppose to leave from N.O. but instead went form Nashville to Memphis.

PA-Paul: I agree on too slow but the trouble of getting mine out of the van makes it almost not worth it

murf: Bruce please send me info I need some

doughboy: You have a lift don't you Paul?

PA-Paul: No0 I dont I have a 48 pound ramp that folds up

Terryw entered the room.

doughboy: Well Murf talked me into a lift and it's great

Terryw: Hello All

doughboy: Hi

PA-Paul: yes bruce please email me that info also what is the weight suggested it supports

LouLou: Where is Coak this morning? Has anyone heard from him? Hi Terry.

Bruce: You got it.  John Test said if you couldn't get them, he would drop ship them to anyone of us who need them.  The price is approx. $12.50@ plus the cost of shipping.

murf: Michael - The cruise was also re-routed because of the hurricanes this year. Biggest season on record, glade its over!

Michael17860: Hi Terry

MikeG: that's true too... if I'm only going to a Walgreens or small store I usually walk.  With my cane and AFOs that is.

doughboy: Murf you need 2 sets of rails, your kinda heavy! LOL

Terryw: Has anyone tried Wheatgrass Juice?  I am gonna post this question in the forums also.

murf: John will not join us this morning

Terryw: I want to know if it makes any difference

kelly: wheatgrass?????

doughboy: Just kidding bud

Terryw: yes

Bruce: Paul, I leaned down on the the bar and put at least 30-40#s of downward pressure on each one and they didn't give at all.

murf: Funny TJ

murf: LOL

PA-Paul: I will also order 2 as 3 days ago i did slipo and lucky did not break anything (but the tile wall

murf: Morning Terry

Terryw: Hi Murf

Terryw: Its 31 here this morning. br

PA-Paul: hi Terry

doughboy: I know, bye the way, Bill is going to call a little later, we may be able to run over to your house this afternoon, Murf!

MikeG: 61 in sunny FLA

Bruce: I'll post the information on the forum today and also ask John how he wants to handle orders.

LouLou: Bruce--How do we contact John Test?

murf: OK

Terryw: But its a dry cold LOL

kelly: minas 10 in beautiful saskatchewan

MikeG: //1

kelly: lol

Terryw: wow kelly

murf: Morning Kell - is that deg C?

kelly: no snow yet !!!!

PA-Paul: hey kelley   OUCH

kelly: minas below cold

Bruce: Kelly, I talk about it all the time, but I always thought Minnesota was cold until I went to Prince Albert in January.

doughboy: Hello Kelly, my sister Louise is going to Canda for a few weeks tomorrow! I'll let her know how cold it is. How are you!

murf: right - I love Texas!!!!

MikeG: Terry, you've been arounf those horses too much...

kelly: Iam fine

kelly: thanks

PA-Paul: we might visit texas for jan/feb

murf: Look me up Paul if you have the time!!

MikeG: Wheatgrass...

PA-Paul: sounds good

doughboy: What the heck is it for

murf: Dinneers on me

da*rt entered the room.

MikeG: how about arginine... has anyone tried that?

Terryw: Wheatgrass juice is getting big herre in the US

PA-Paul: for what

Bruce: Morning Don

doughboy: What's it for Terry

Terryw: they squees the juice out of the grass

murf: Morning Don Hows the weather in BC?

Terryw: and drink it

PA-Paul: GREAT for horses

Terryw: Supposed to be good for you

kelly: is it one of those miracle drinks terry?? for all kinds of ailments??

MikeG: Yep, it always starts in CA.  Then ripples east

da*rt: Good morning All - Sorry I'm late - login problems!

Bruce: Mike, what is arginine?

Terryw: I think it cleanses the body of toxins

Michael17860: I unerstand that  wheatgrass will clean the inner organs.

Terryw: not sure

murf: That drink sounds illegal to me!

Terryw: Peopke only do it in 1oz shots

kelly: oh ok

PA-Paul: i'll have to look it up

doughboy: I don't know this, but I'm on a new drug called Byatte for Diabetes and it's making me lose 15 to 20 lbs. per month and whenever you reach the weight you are supposed to be at, it quits making you lose it.

PA-Paul: do you know whay it costs $

MikeG: yes, sorry Arginine

murf: Yup I thought so! LOL

Terryw: about $2,50 an oz

kelly: i bought a bottle of xango from hawia?? it kinda does the same as wheatgrass cost me 45 dollars canadian

PA-Paul: That does not sound too bad if it does something good

MikeG: It's a strong amino acid that I was told helps you regain strength...

PA-Paul: hey doughboy   can you email me with that info also or post info to find it

MikeG: I've tried Mango juice too... never helped me

kelly: you did

Michael17860: Kelly did  you see any difference after taking xango?

Bruce: Who recommended the stuff, Mike?  Do you know if it helps?

kelly: no not really

MikeG: too expensive too... I was paying $35/bottle

kelly: yup its another scam i think lol ??

Terryw: I have been having lost of smoothies lately at Jamba Juice

PA-Paul: like the noni juice from some island

Terryw: Love em

Terryw: need to make my own

doughboy: Well Fella's, I have to leave now.  Paul, you can look it up on the web under web MD but I'll be glad to email you the specifics.  you can also look it up under type 2 diabetes and type in Byatte and it will give you the info.

murf: I guess we have to watch out for the crooks out there.

Bruce: Take care TJ

kelly: jus drink green tea lol its the same lol//2 //2

LouLou: So long TJ. Stay healthy.

PA-Paul: That is fine i will look into it.

murf: Talk to you later TJ

doughboy: Thanks, Bruce, my guy on the roof knocked the latter over and can't get off, so I'll have to try and put it back up there, see ya

Bruce: Green tea is very good for you and so is Banchi Twig tea (the twigs that green tea is made from but without the caffine).  I really like that stuff and it is an antioxident (spelling).

doughboy: Bye all!

doughboy has left the room.

PA-Paul: bye

kelly: yah its good bruce plus its cheap to buy

Bruce: Don, what is going on in Liverpool these days?  Is the weather good?

murf: Fire down the street I guess the holiday season has started here

Terryw: I had an isasue with my new PC the TV tuner.  when I tried to run it it told me hardware not installed or makfubctioning.  I had to pack it all up and take it back to Best Buy.  The techs told me they did not know how to fix it and I had to re-install operating system

Terryw: I came home and called Sony, thay had it fixed in less than 30 min

PA-Paul: dont you just love that TErry

Terryw: The guy from sony said, You learned a lesson here" never go to best buy for tech help always call Sony first LOL

murf: I was only santa on two fire trucks!....COOL

MikeG: Bruce - it was a friend of mine in Atlanta who reccommended it.  I bought a bottle yesterday and just took my first one today.  I'll let you know if I see any good results from it.

PA-Paul: I know Bets buy has some great prices on some things but I really dislike that place here in PA

Terryw: It was a auto-update from Microsoft that messed it up

PA-Paul: thast really can tick you off.

Bruce: Thanks, Mike.  I need a good legal pick-me-up.

Terryw: I was not about to re-install on just one guys recommendation. It took 2 weeks to get it up and running back where I had everything

MICH: Do any of you use a wheelchair or powerscooter in the house... I haven't yet but I can see the day coming sooner than later

kelly: it's good terry, you have alot of pc knowledge hey?

Terryw: Now I can get back to work and get those past chats posted & stuff

JoeK entered the room.

Terryw: Bruce the CutePDF writer I have says it wont work with XP is ther another version

murf: I have but not very often. I use a walker with wheels now in the house

MikeG: cheap too!  I think I paid $3.50 for 50 caps.

Bruce: I do, Eric.  Ever since the second fall this year and two broken bones, I use it for my general transportation.  I still stand and move around the kitchen, office, etc., but I am not taking any chances right now.  I am a little paranoid.

Bruce: Yes, Terry, I believe so.

PA-Paul: Hey MICh  I have for a short time now and getting worse faster

Terryw: Bruce I am going to start taking Calcium to build my bones just in case I fall

kelly: as for me I'am still mobile,,, but my legs get sore often

LouLou: Has anyone heard when the tests by Dr Chen will be taking place? I was looking forward to that test at NIH.

Terryw: I have never broken a bone

kelly: and my lower back bigtime to

murf: Don't blame you Bruce I look at it the same way after braking my foot 4 times in one year

PA-Paul: you are lucky Terry

MikeG: Bruce, what bones did you break?

kelly: i emailed dr chen to??? he replyed to me but there only recruiting americans hopefully ill get selected for the study trial

Bruce: My wife carries a Glock around and said she will just shoot me if I go down again this year.  (LOL)

kelly: when they go for canadains

murf: Ron- John will have word soon on that for us

Bruce: This last time, Mike, I broke both the tibia and fibula on the left leg.  In January, I broke the left ankle, left fibula, and fractured the right tibia.  It has been a hell of a year.

kelly: if and when they recruite canadains???

murf: LOL LOL

MikeG: Wow!  I broke my fibula in September.  Now I'm wearing the AFO everywhere.

Bruce: I now us a walker or chair all of the time.  I hated for it to come to this, but ...

PA-Paul: Yes Bruce I do too

murf: We will need to get 50 people for the study

murf: Before they will start

kelly: well murf my twin brother and i applyed to nih for the study, we are perfect canaditates, in bethasda hopefully we;ll be selected for the placebo and muscle testing its a 2 yr study

murf: Canadians are welcome (aren't we lucky?!)

JoeK: Murf I gon on late -- What study?

LouLou: Are you guys getting ready for Xmas? If you are all ready, you are missing the thrill of last minute shopping. What a challenge.

kelly: actually dr chen told me they may recruite canadina if there is not enough americans

Bruce: Some time we need to have a chat on fire safety.  I was reviewing our exit plans the other day and I could easily be cut off from the ramp.  I need to update my plans just in case.

murf: Joe - its a clinical trial that NIH are planning

Terryw: I am gonna go guys,  talk with ya all again soon.

kelly: ok bye terry

Terryw has left the room.

JoeK: Murf   where can I get details?

murf: e-mail me later

MICH: Those that use walkers in the home... have you found any that do well in the grass outside, or on carpet, or winter ice??

LouLou: Good thought Bruce. Never know how to respond because, each case could be very different. Best laid plans--not always the best solution.

murf: no grass or snow just carpet and tile

murf: I would need chains for the wheels!

Bruce: Eric, carpet works well with mine, I don't believe any will work well on ice.  My brother has one that has four wheels and brakes and he uses it most everywhere.

LouLou: LOL. Murf.

Bruce: It also has a seat for when he becomes tired.

murf: I got one like that too Bruce cost me $100 at SAM's Club

murf: Wheels are abour 6"

murf: but the brakes wouldn't work so well on ice I think

PA-Paul: do they roll when you are seated on itr??

murf: You can hold the brake easy enough when seated

PA-Paul: if the brakes are not locked LOL

Bruce: Well, I need to go.  Thanks for the chat today Murray.  I'll post the info on the forum for the grab bars as soon as John tells me how he wants to handle orders.  Everyone, take care and stay healthy and safe.  Mike, if the stuff works for you, let me know.  Take care.

MikeG: You guys all need to move down here where we don't know what ICE is!

Michael17860: By all see you next chat.

Bruce has left the room.

Michael17860 has left the room.

PA-Paul: no I mean can i uise ti to move about if I want while seated

kelly: well my fellow kd friends i have to go to see ya next time take care

kelly has left the room.

murf: Paul I did the last time I broke my foot but it's not the best

LouLou: Paul--they are not made to move about while seated.

PA-Paul: thanks Murf 'and Lou

murf: Take care Kelly, Bruce & Michael

MICH: Speaking of seats does anyone have one of those seat cushions that catapults you out of a lazyboy chair and do they have them a Sam's Club?

MikeG: Gotta go too - take care everyone.  Until next time... bye.

MikeG has left the room.

PA-Paul: MICH  i do but very seldom use it got mine at wallgreens for 100./

PA-Paul: if we were close enough I would loan you mine....

murf: Mich - yes and the spread sheet online has them too. Their great

MICH: What do you call the seat ejector for 100??

PA-Paul: up easy

murf: Gee - mine was $650. did they see me coming or call me?

PA-Paul: what spread sheet Murf?

PA-Paul: murf do you mean a whole auto up recliner?

JoeK: I got a catapult cusion and use it often --- I installed backwards and leaned forward and it sent me to the floor

PA-Paul: my recliner that can raise me up cost about $600

murf: I put it together for the NOLA conference and it has all kinds of aids , websites, toolfree numbers for companies that supply everything we need to help us live.

LouLou: Murf--did your up easy lift cost $650? Was it just a chair lift that you can take with you to use anywhere.

murf: I bought the hole chair

da*rt has left the room.

murf: I guess that is where the cost difference is

PA-Paul: ok thats why it cost so much.. as for the spread sheet is it on line at the webv site?

murf: It is supposed to be but I'll send it to you and check online again for it

PA-Paul: Thanks so much

LouLou: Murf--Yours was cheap--mine cost $800 at the scooter warehouse in PA. I guesss they saw me coming.

PA-Paul: well BYE ALL till next time  stay warm

PA-Paul has left the room.

LouLou: See you Paul. Stay healthy.

murf: See ya Paul I just sent it to you

JoeK: The cushion lift is a spring that compresses and releases when you shift your weight  ($100 =/-)

murf: I kind of got a little side tracked when santa went by so I'll have to read this chat again

murf: That sounds abouut right Joe. Mine is the whole chair

MICH: It seems like its been months or even a year since I last borrowed my daughters computer for these chats... good to be back... God Bless... talk to you later

murf: Take care Mich Later...

JoeK: Lift chairs can be bought at Wal-mat pharmacy area here in NC

MICH has left the room.

LouLou: Well guys--I must go for now. Hope you all hav a merry Xmas. Stay healthy....

LouLou has left the room.

murf: Joe - Lots of places have them so I would be good to shop around and get the best price

da*rt entered the room.

murf: Ron - Take care

JoeK: need to go now

JoeK has left the room.

murf: Good chat today...very fast for me

murf: Well Don - I hope you have a great holiday season and we'll talk to you next time.

murf: Don?

da*rt: I regret having lost contact - I will have to think of something intelligent to say so that I stay on line

murf: No probs

murf: This is the official end of the chat

murf: we can still talk if you want

da*rt: Lots of good stuff today, I thought - I look forward to reading it when it is posted.

da*rt: I'm gone, Murf and all - Thanks!

murf: I'll be getting it to Terry before noon but he has had computer problems lately so hopefully by Monday it will be up

murf: Take Car Don

murf: Care