Kennedy's Disease Association

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"Surfing the internet I found the KDA and for me it was like an island for a castaway."

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Kennedy's Disease Chat Transcript  02-4-2006

Topic:  Mobility

Host: Murray Williams

Chat Participants:




Murf: Morning Craig

craig_h: good morning Murf

Murf: Hows the weather in Virginia?

craig_h: finally was able to log in !!!

Murf: We all had to re-register for this one

craig_h: rainy ..... might snow later ..... how is Houston ?

Murf: 56 now and looks like it will be 70 and sunny today

craig_h: wanna trade?

Murf: no thanks anyway LOL

Murf: I've had my fill of snow and cold weather and thats why I live here now

craig_h: 2 weeks ago with Dr. D was interesting

Bruce entered the room.

Bruce: Morning

Murf: It was a good chat... we have another good one with Paul Taylor coming on the 18th

coak entered the room.

craig_h: morning Bruce

Murf: Morning Bruce and John

craig_h: cool, I saw Dr. Taylor in August

coak: Hi everyone

craig_h: hi coak

Bruce: I am only on for a short while today.  We have family coming up to celebrate two birthdays.

Murf: Me too the big 50

DavidJames entered the room.

Bruce: Oh ... to be 50 again

coak: Glad you all are still here to celebrate them

Bruce: Happy Birthday, Murray.  Are your folks still in town

DavidJames: hello

Murf: Morning David Hows the weather in Canada this morning?

coak: I can't remember that far back

Bruce: Morning, David, what is the weather like up there today?

TJ: What do you mean Murf about not much in my profile?  Good morning everyone!  I can't stay on the chat very long, my construction workers just showed up to pour my new sidewalks and ramp.  I got my new powerchair this week, Yipee!

coak: Hi Craig.  Do we know each other?

DavidJames: we have had a very mild winter. It is close to freezing.

craig_h: might not coak, I've ust come into this chat the past few times

coak: I'm happy for you, TJ.  You'll really appreciate it.

coak: Where are you in NJ?

Murf: David - I moved here 6 years ago - its 56 and going to 70 today, just so you know LOL

TJ: Yes and medicare paid for all of it!

craig_h: Murf is a weather bragger, lol

TJ: Now I have a new scooter and powerchair!

Murf: LOL

DavidJames: Where are you Murf?

Murf: Houston TX

DavidJames: I am in OTTAWA..

TJ: I'm ready for another hoedown! Up north, how about you Murf!

TJ: How's the Coakley Cane going, John?

Murf: TJ - the My Profile tab above. I think it only works if someone else is online with you. I tried twice loging on alone unsuccessfully.

coak: Hoedown on the Sat after Labor Day (every year) -- everyone invited!

TJ: Got to go, it was fantastic last year!

coak: Coakley cane has been re-named to the LIBERTY CANE

Murf: We'll have to plan the trial around that day

craig_h: at the hoedown, will you be serving Dutesteride smoothies?  lol

TJ: A proper name for it.

TJ: I never did receive an e - mail about the test

coak: With the 444 +/- here, I don't know what we serve.

Murf: right click to someone's name to the right and you can see their profile

Murf: I sent you one and so did John

coak has left the room.

TJ: Hey Murf it worked

TJ: I did not get either one, sorry!

Murf: cool

DavidJames: I sent in a response to the drug trial but i have not got a response yet.

coak entered the room.

coak: Blown off -- back again

TJ: I don't know if anyone has poured concrete lately, but it's expensive, $75.00 a yard

DavidJames: Which drug are they going to test?

Murf: David - you won't

Murf: not yet anyway

craig_h: what is the liberty cane?

TJ: How are you Bruce and John both?

coak: Dutasteride (check spelling)

Murf: better than gravel though right TJ?

coak: This shouldn't be considered a commercial, only a reply..... Look at

TJ: Yes, absolutely Murf!

Murf: Can you spin your tires on the concrete?

craig_h: thanks, I'll check it out later

TJ: I heard a rumor that all KD people get one free, is that right John, LOL!

Murf: Very good cane I love mine!!!

coak: If concrete was being poured here, I'd probably fall and leave my as- print in it.

Murf: and well worth the money!

craig_h: so far luckily I haven't needed a cane much

Murf: You will - sorry

TJ: John, you have a beautiful place, no concrete neede there!

craig_h: I know

coak: Thanks

craig_h: I can still get through Walmart as long as I hang onto a buggy, and go first thing in the morning

coak: Today's topic is what? Mobility?

Murf: Johns cane is the best nost functional cane i have used

Murf: yes and this falls (LOL) in line with that

Murf: so does TJs concrete

coak: I had to get a power chair about 2 months ago & got a used Chrys AWD van to haul it in.

TJ: Well, I'll tell you all, 2 years ago I didn't need anything, now today I'm tickled to death to have my scooter and powerchair, what leg savers!  My wife's Uncle died Thursday of ALS, we have to go to the funeral today.

DavidJames: I get around pretty well on my own so far.

TerryW entered the room.

coak: Hi Terry

Murf: Morning Terry

TerryW: Hello,

TerryW: Just woke up

DavidJames: helllo terry

craig_h: morning Terry

TJ: Hi, Terry

Murf: sorry TJ

TerryW: Did anyone see ER this week on TV?

TerryW: very good episode

DavidJames: I missed it.

TJ: Yeah, he 's a great guy!

TerryW: on a man with ALS"

coak: I put a lift in the back of the van and also put an inverter in it to keep it charged up while driving from here to there.

TJ: No was it interesting!

TerryW: Yes very good.

TJ: Hey good idea John

coak: Great show this week

Murf: John  can you send me info on the inverter?

TerryW: Today is Bruces BDay

coak: I wish I could type as fast as he was able to communicate -- what a neat technology!

DavidJames: happy bday bruce

TerryW: Happy Birthday Bruce when you read this transcript

TJ: Happy B-Day, Bruce, I'll bet your 30! LOL

Bruce: Well, actually, it is Tuesday.  But we are celebrating it today because it is a weekend and everyone can come.

TerryW: LOL I just noticed he was herre, I am still 1/2 asleeep

coak: Happy B'Day, Bruce & Murray

Bruce: Thanks, all ... I don't feel a day over 70

Murf: John you and me are mr gadgets

TerryW: I thought you were not gonna make it Bruce?

Bruce: I am only here for a little while awaiting everyone's arrival.

TJ: You know talking about mobility, I wish I had gotten my scooter and chair earlier just because it saves the strength in my legs

Murf: me either Bruce I feel 90

TerryW: Murray is it yourBDay also

TerryW: If so Happy BDay to you

Bruce: Speaking of canes, John's cane is very sturdy and comfortable.

Murf: 50 Terry

Murf: TJ - I'm glade

Bruce: TJ, how do you haul the wheelchair around?

coak: Murf -- $50.00 at Radio Shack. Plug it into an outlet that is alive when Ignition is on and you have to push the ON button on before you leave on a trip. It will chg until Ign is off.

DavidJames: I will turn 50 in may.

TerryW: I just read my e-mail it looks like FLDON can't get logged in?  I bet its that security setting. I will have to fix it with him this week

TJ: Guy's I have to go, the construction workers pouring my new sidewalks need me outside, Murf update me later, please.  Bruce I bought an SUV and put a lift on it

coak: He needs to re-register

Murf: I use mine every day and have for the last 3 years at work. Otherwise I would not be able to go to work.

Bruce: I wonder if that is why our turnout is a little low today...

TerryW: he did earlier this week, but I am not sure that he tested it

Murf: Thanks John

craig_h: terry, I couldn't get logged after re-registering .....  I had to go to "history" and find  to get in

TerryW: 40 people reregistered

Murf: Have fun TJ

TJ: Hey I liked the message I saw about the chat being the 1st and 3rd saturdays, good info Terry!

Bruce: Out of how many before Terry?

TerryW: maybe more but i did not check this morning

TJ has left the room.

TerryW: we had about 150 before

Bruce: We might need to send out another reminder next week when we notify everyone of Paul Taylor's attendance as our guest.

coak: Terry, Can you send that link to Don? I just asked him to re-reg again.

Murf: Some will not test the system before hand so it may take a week or so to get back there. (to 150)

TerryW: I put a new post in the KDA forums about swallowing exercises I saw on the news this week. to help with swallowing food

coak: OK Men -- Who is saving this chat today?

Bruce: The forum has almost died again.

Murf: I just ordered a DVD on Qigong exercises

TerryW: OK

DavidJames: I got some swallowing exercises from my doctor,

TerryW: I noticed bruce

coak: Bruce, I can not remember to look at that -- too much on the plate.

Murf: I am going to save the chat every time I'm loged on .... Just in case

Bruce: Murray, I still practice every day even though most of my exercises are now done sitting down.

coak: I practice with Guinness!  Smooth and no large parts to get stuck.

Murf: I ordered the wheelchair tape # 001 so I'll be doing it sitting down too.

Bruce: Even if we would post items that work for us, for example the Joey, it would be a good resource.

Murf: LOL John you lush

coak: Craig, Can you briefly describe here --= or send me email

craig_h: coak, about?

coak: Murf, we need to stay in practice before we all go out in Atlanta

coak: Craig -  swallowing

Murf: Oh .... I  forgot

craig_h: sorry coak, that wasn't me

Murf: Guinness makes my legs go funny

Bruce: I have to go.  People are starting to arrive.  Have a great day and stay safe, healthy and upright (unless sleeping).

coak: Info on JOEY lift ... Check it out . It's from Bruno and I'm really pleased with it.

Bruce has left the room.

TerryW1202 entered the room.

TerryW has left the room.

Murf: You cloned youself.....

Murf: Take care Bruce

coak: Craig -- sorry. The screen moved faster than my eyes.  OK whoever has swallowing, pls advise.

TerryW1202: I sent don the link and then I tested it and it logged me in twice

TerryW1202: I missed that text coakwhen I got kicked out

TerryW1202: what did you ask

coak: I just scrolled back up & found what I wanted -- thanks

Murf: John - I also have a Bruno lift but a curbsider

coak: Terry -- swallowing

TerryW1202: My name appears wierd, I will be right back

TerryW1202 has left the room.

Murf: Will I catch what you have as I get older John?

craig_h: I keep opening email hoping to see "The NIH would like to invite you to Bethesda" ............ lol


TerryW entered the room.

Murf: Good Morning Terry LOL

TerryW: Thats Better

Murf: Craig - Cotach John for this

Murf: contact

craig_h: heck, if I got that email, I'd buy Murph a case Guiness

craig_h: oh, I got the volunteer email, I sent that back immediately

Murf: the case is for John

coak: The Joey is really user friendly.  Chair sits on platform that goes up & in the back of the van. I sprung for retractable hold down straps (worth a million)

craig_h: or forwarded it

coak: I'm the fully mobile crippled guy now.

Murf: Craig - we have to find 50-60 people for the NIH. They can't go looking for themselves. John Coakley is leading this effort.

TerryW: We need to think of a way to get people more involved in using the forums

craig_h: thanks Murf. I understand.

Murf: Me too John and my boss wants a speed limit in the office now!

TerryW: NOTE: to anyone reading this transcript - If you have a topic or category that you think would be good to put in the KDA forums please e-nail the KDA with your ideas.

TerryW: e-mail

TerryW: where did bruce go?

Murf: I agree Terry

Murf: He had people coming over for his Bday

TerryW: In 2 weeks I go to speak at a hopital on KD

TerryW: in from of students

TerryW: front

coak: I'm sure that everyone who has contacted This email address is being protected from spambots. You need JavaScript enabled to view it. will be contacted within the naxt 2-3 months after the protocol is approved & in place.

Murf: Cool doctors?

TerryW: spelling is bad this moring finger are cold

TerryW: some may be there. I am still getting details.

Murf: good luck!!

craig_h: hope that goes well Terry

TerryW: Today the auction ends on the items the KDA put up on Ebay

coak: I've done that 5 times now, Terry. It's a good thing. Last time was at NIH w/Dr. Chen

Murf: Would it be worth reminding the membership on that Terry?

coak: Craig -- email me at This email address is being protected from spambots. You need JavaScript enabled to view it. & put KDA in subject line.

coak: I'll get back with you later this weekend.

Murf: Dr. Paul Taylor will be here to chat on the 18th of Feb

craig_h: ok coak

coak: Got to go -- Family matters. Talk with you all again soon

coak: Bye

TerryW: we may just do that Murf

coak has left the room.

craig_h: Looking forward to seeing Dr. Taylor. He was very friendly and informative when I saw him in August

Murf: We need to get the word out so no one has problems loging on

Murf: Take care John (always a dollar short and a day late)

TerryW: one other problem that people may have had is that the KDA server was relocated and some people trying to get into chat may have been routed to the old server

DavidJames: I must be going now

DavidJames: bye

DavidJames has left the room.

Murf: Bye David

TerryW: I think I am gonna go take my shownow myself,  Hot water always feels good and gets me moving better

TerryW: shower

craig_h: ok, y'all have a good one. See ya  on the 18th

craig_h: Hot water helps me too

TerryW: see ya

TerryW has left the room.

craig_h: see ya Murf .......

Murf: This is the important computer anyway so if I can't log on at work its no big deal

Murf: see ya

craig_h has left the room.