Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The site is essential for a source for the general public, whenever one encounters the diagnosis of Kennedy's Disease and has no idea what that might be. There is simply no other source as easily available to the public."

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript  03-19-2005

Topic:  Open Forum

Host: Bruce Gaughran


Chat Participants:



murf entered the room.

bugsy: ooooooooo..........i ccccccccccc

billeric: I can't hear you Lou lou!

Terryw: Hello all

bugsy: hi terry


kelly: hey terry how are ya???

murf: ok I'm here

Terryw: just woke up 5 min ago

wolfman: hello Terry

kelly: sleepy head lol


murf: a Little late but here

murf: Good morning all

LouLou: Murf was to host today so him not being on line, I have started the chat. Paul you are crazy as ever.

PA-Paul: LOL loulou

denny entered the room.

billeric: It's o.k. Murf

Terryw: ok

murf: Thanks Ron

LouLou: Paul--I am here.


PA-Paul: sorry about the caps

JoeK entered the room.

LouLou: Hi Murf and Terry. How are you guys?

Terryw: be right back, have to take my pill

Terryw: we are fine

murf: I'm taking mine now Terry...All 10

bugsy: so terry how's your KD ,are you progressing...if you don't mind me asking?

murf: ok I guess the cruise is off

LouLou: Terry--So sorry about your father passing away. How did all the arrangements go? I know it is a tough time.

PA-Paul: how many cruisers did you have

JoeK: Good morning from Greensboro, NC

murf: We had two cabins book

bugsy: //35

PA-Paul: i see

Terryw: Bugsy I am doing a lot more walking since I can't ust the powerchair on the proprty gravel and my lift on the truck is under repair. So I walk everywhere

kelly: be careful of falling TERRY

bugsy: really ...well that is certainly a good sign..........i am happy to hear that terry

murf: Terry - your walking better that a few years ago

Terryw: Most of the time when I fall now is under the horses when I bring them in

LouLou: Murf--I called Claudia Ramirez from the cruise line--She wasn't sure if we were going or not.

Terryw: dangerous

Terryw: have not been stepped on yet

murf: Right - no one had booked

wolfman has left the room.

bugsy: its better to move as often as possible ...get those mucles worken works for me

Terryw: murf, we still have not gotten any further deposits here :(

wolfman entered the room.

LouLou: Murf--I'll talk to you about it at the board meeting.

bugsy: how many are going so far ...terry? on cruise

kelly: not enough pple interested in the cruise to expensive$$$$$

murf: O well

murf: Actually the cruise was cheap

murf: less than $100 per day

bugsy: why dont we all meet at the peace gardens for a picnic ........half ways for all of us

Terryw: 2 (couples) deposits received here and I think 3-4 others are commited

murf: Including food

LouLou: 100 bucks a day for great food and lodging---Very cheap.

bugsy: ooooooooooooooo

JoeK: New places and think just a problem for me

murf: On one comitted with money, Lots of people said they would go

Terryw: yep

LouLou: Terry--didn't you get my check? It was sent early this week.

Terryw: not as of yet. I willll check again today

bugsy: if you dont mind me saying lou lou ...i think thats expensive in canadian dollars ....100 a day

kelly: when are those kd brochure's going to be sent out terry?? do u know??

Terryw: kelly it was done 2 weeks ago

PA-Paul: so is it still on or is it off THE CRUISE??

kelly: ok i never gotten mine yet

kelly: ???

LouLou: It is really good to see so many on board for this chat.

murf: I got mine terry ... thanks looks good

Terryw: oh kelly are you asking about the ones for you

kelly: yes

Terryw: have not sent those yet, will soon

Terryw: sorry

kelly: i neeed 6 of them to ed the gp;s and nerologists

kelly: ok

LouLou: Terry--I received my brochures.

wolfman: I didn't get mine yet either

murf: Paul - the deadline was Friday

PA-Paul: gotcha

Terryw: I have to sign off this pc and transfer to the other PC, susanne need tis one

murf: We just didn't get enough interest

JoeK has left the room.

bugsy: why is every one quiet

murf: It did quiet down I thought it was something I said

JoeK entered the room.

murf: //11

bugsy: problems with yo pc joe K///

PA-Paul: my father taught me if you have dont have anything good to say dont say anything

Terryw: Terry can't remember his password - trying to find it to log back in- sorry I have to do our taxes this morning and all that info is on this computer!

Terryw: He might have to log in under my login - will be back in a moment

murf: What do you want to say Paul?

Terryw1086 entered the room.

PA-Paul: dont have anything to say VERY depressed lately

billeric: Just send in lots Susanne!

bugsy: what ever is good for the goose good for the GANDER pa ...says

Terryw: The Cruise might still work for those who want to go - but if they still want to go, might be more expensive without the "group" rate... we'll have to see.

Terryw: Bye guys -Terry is on now!

Terryw has left the room.

Terryw1086: Hi I am back

JoeK: yes but more wirh my fingers and my spelling

murf: Ant thing you want to talk about Paul? My door is always and e-mail too.

wolfman has left the room.

bugsy: how old you are joe k?

PA-Paul: thanks murf

wolfman entered the room.

LouLou: I signed up for SS disibility. If you think about all your good times and bad, they want to know everything about you. It is really a challenge to stay positive.

bugsy: social services????......lou lou

LouLou: Social security

bugsy: oooooooooooo

JoeK: bugsy 74 years young next pril 3

bugsy: oooooooooooooo

kelly: does anyone, here in the group know about insurance policy? not the company group benifits plan that they give to emplyee;s need info on this

JoeK: that April 3 rd

LouLou: Hey Paul--Need an ear of someone who understands---Talk to me or any of the KD'ers.

bugsy: well i,ll be giggered birthday is april 4

PA-Paul: Yes ThanksRon

MICH: I got on SS Disability about a year ago...took several months... presently being audited even though I'm below substantial gainful employment... I'm working 20 hours a week.

Terryw1086: kelly, what type then?

murf: Happy Birthday guys!!

Terryw1086: HB in advance

wolfman: Hey Kelly -- did you get my sooooo late email

kelly: the great west life insurance policy??? not the one from my company i worked for. do they give this info out?? to emplyee;s?

kelly: yes i did wolfman thenks

Terryw1086: I don't know of that Kelly. Sorry :(

kelly: ok np thanks anyways

bugsy: //2 phone them

kelly: ill talk to a lLAWYER KELVIN

bugsy: oooooooooooooo

bugsy: well iam off and running by all ...have a nice day

billeric has left the room.

bugsy has left the room.

murf: Any body want a holidya together this year?

Terryw1086: We are in full spring here. My Allergies are going nuts

murf: holiday

PA-Paul: sounds good

LouLou: It is a little depressing to have all your hard work in organizing the cruise, to see it fall apart. Thanks for all your hard work, Murf---I know you put alot of time and efffort into the cruise.

kelly: ironic terry i have ocular allergy really bad in my eyes and sinas;es

JoeK: We had snow this past week

LouLou: So long Bugsy

murf: It was no big deal

murf: Where are you Joe?

JoeK: Greensboro NC

murf: Snow!! wow we got some in Houston this year for the first time in a long time

Terryw1086: Murray, I know how that can be. When I was young and first married to my ex-wife we held a halloween party and planned abig party and bought all the food and decorated and nobody showed. It was so sad :(

Terryw1086: I was 20

PA-Paul: see you all in the funny papers LATER

billeric entered the room.

PA-Paul has left the room.

LouLou: So long Paul--stay positive.

JoeK: I took that cruise out of Miami several year ago, while I could walk with out hurting.

murf: Well I guess good it didn't get that far Terry

Terryw1086: Has anyone tried Magnetics to help with KD strength or balance?

Terryw1086: Someone approached me and wanted me to come to a sales pitch meeting

murf: Joe - I was thinking this might be why we didn't get a lot of interest

murf: Ship was 800 ft long and 130 ft wide

LouLou: I THINK THE CRUISE WAS A GOOD IDEA. To bad it wasn't successful to bring KD'ers together at leisure. Sometimes talking to someone helps us all with problems we might have.

JoeK: I'm willing to try for a new place.

Terryw1086: It's really hard for some to plan that far in advance.

murf: I like getting together once a years. I look forward to it

billeric: Terry, the magnetics thing seems to come and go. My feeling is that it doesn't do much.

LouLou: Terry--I used magnetic shoe inserts--They seemed to help with circulation.

Terryw1086: I need a Gyro in me to help me balance

kelly: well my kd friends got to go take care, and see ya all on the next chat session

murf: Good one Terry LOL

Terryw1086: bye kelly

JoeK: Falling on that metal deck is not a good thing

MICH: Speaking of foot circulation... do many of you lose the circulation during the night in bed in both the feet and calves??

kelly: by terry

kelly has left the room.

murf: Bye Kelly

wolfman: Take care Kelly

billeric: My balance is also not the best Terry. Difficult to stand with my eyes closed.

LouLou: So long Kelly--Stay healthy.

Terryw1086: yes Mich both my feet have very poor circ

Terryw1086: I posted what causes it on the KD site

JoeK: I hace cold feet moat of the time

Terryw1086 has left the room.

LouLou: Isn't that amazing--Shut your eyes while standing and you feel like you are standing in a boat. Strange, huh?

billeric: I guess that's the bulbar part of our disease.

Terryw entered the room.

Terryw: Cold feet is a common condition that affects many patients from all walks of life. The body responds to cold temperatures by reducing the blood flow to the extremities leaving the feet vulnerable. Chronic cold feet are often a result of impaired circulation (peripheral neuropathy) and lack of mobility. Patients with Muscular Dystrophy, Multiple Sclerosis, Diabetes, Arthritis and Cerebral Palsy are at risk of this condition. One of the major causes of cold feet is peripheral neuropathy which can effect the feet and hands trying to protect core temperature.

LouLou: Mich--I get muscle cramps in my legs at night. Sometimes wakes me up.

Terryw: No cramps here anymore

Terryw: No cramps here anymore

Terryw: echo

Terryw: LOL

Terryw: I love hot showers or baths

JoeK: shut my eyes while standing and i will soon fell the foor

Terryw: I miss my hot tub

MICH: You all have a good week, talk to you next time.

murf: I can't walk when I get out of one Terry

billeric: Bye Mich. Give a call when your in Az.

LouLou: In California any tub is a hot tub. LOL

Terryw: JoeK, I lose my balance when taking pictures looking thru the camera viewfinder

murf: Bye Mich Take care

Terryw: bye mich

MICH has left the room.

LouLou: So long Eric. Stay healthy.

JoeK: bye to all

JoeK has left the room.

wolfman: got to go-- take care , see you next time

murf: Take care guys...was it something we said?

denny has left the room.

Terryw: Lou Lou are you goi ng to save the chat session

Terryw: do you know how

denny entered the room.

billeric: Bye guys. Stay upright. No falls.

Terryw: or murf

murf: Ya Ron could you save this for me?

billeric has left the room.

LouLou: I haven't done that yet. Shouldn't be too complicated.

murf: I can save but it'll be from about 09:33

Terryw: murf can you

wolfman has left the room.

Terryw: thats OK

murf: OK i will

Terryw: ty

Terryw: I am gonna go take my shower before board meeting

murf: Ron - want to try

LouLou: Sure

Terryw: bye all

Terryw has left the room.

murf: See ya Terry

denny has left the room.

LouLou: Talk to you soon Terry.

murf: Ron - click the save button third form right at thr bottom

murf: Hold your left mouse button and highlight all the chat

murf: hold the Ctrl button and "c" at the same time

murf: open Word or an outlook e-mail and hit Ctrl "V"

murf: Clear as mud right? LOL

LouLou: End Chat