Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I had just been diagnosed with Kennedy's Disease and had no idea what it was or what to expect. The KDA maintains an excellent website that explains the disease. I found details on symptoms, the cause, and exercises I could do to maintain my strength."

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript  09-03-2005

Topic:  Open Forum

Host: Ron Wiker


Chat Participants:



murf entered the room.

murf: Mroning all

Terryw: hi

kelly: ellol murf

LouLou: Isn't it strange how weakness comes and goes so quickly. Doing a task on day not affect you much and the next time it will knock you down quickly. Hi Murf.

LouLou: Louise--how is Bill doing?

murf: Lots of Canadians on today!

Terryw: slow chat day today

murf: What are we talking about?

LouLou: Terry--did Susanne get a break and get the long weekend off?

kelly: //23

LouLou: Open forum today Murf. What is on your mind?

Terryw: yes, but the weekend is aalready filled up with stuff to do LOL

murf: Kelly - are you buying a round of coffee?

kelly: yes Ia lol

kelly: jave for everyone ok on me

murf: Thanks

kelly: only if you promise to lower the gas prices ok

gofr: That is not unusual to be tired one day and not the next, or to be affected differently day to day.That is the insidious part of Neurologies- they sneak up on the victim so that he doesn't realize things are getting worse, No?

murf: I wish I could!

Terryw: I will be right back I just woke up and forgot to take my pain meds

LouLou: Depression is something we all go thru from time to time. Sharing our thoughts makes it easier to deal with.

gofr: That is the sad part - pain. We can consider ourselves blessed if we don't have to cope with that. and yes, that must be depressing!

kelly: fatigue play's an- important role with us kd'ers i think as for me iam always tired and cant seem to sleep well @nite? gosh i dont even know, when the last time i had a good nite's sleep

murf: We need to talk with people sometimes and most of us on the BOD are available any time to talk too.

Terryw: I am back

gofr: We can hope that you left your pain behind you, Terry!

LouLou: I need your thoughts on how to help someone going thru a case of depression. We all handle our problems differently. What works for you?

murf: Ron: We need to talk, thats the only thing I found that make you feel better.

Terryw: I have been trying to paint some trim with a paintbrush the past few days but can only do it for about an hour and my arms & hands give out and then the next day they are real weak and hurt

Terryw: Holding arms up

murf: I have also given in to the fact I can no longer do some of the things I used to.

kelly: yes terry that happens to me alot to?

Terryw: Also lately I have been having the feeling that my feet are numb. never had that before

murf: So now I hire people to do things like cut the grass, change light bulbs in the house and clean

kelly: i get pins and needles in my fingers and toes sometimes to?

LouLou: I usually think of myself as not having the problems I hear alot of others have. KD is alot better than Lou Gehrig's disease. See we are blessed.

gofr: Does exercise help those symptoms? And yes, we could be worse off.

kelly: lou yes you are so true, thank god we have kd, and not als

wolfman: My right leg has no feelings and the end result is that I crash.

Terryw: I get real depressed when I can't do what I think I should be able to do

LouLou: Most important is to work WITHIN our limitations. Don't expecxt more than we can handle.

kelly: yup it is good to not use our muscle to much or otherwise we spasms out, via,, weakness falling etc

Terryw: Like riiight now if seems like a task to type

kelly: gof stretchin the muscles seems to help

Terryw: arms tired & weak

murf: I'm not 20 years old anymore either and can't play football but I don't get depressed about it

gofr: Limitations CAN be very depressing, but if I can mention the Bible - God expects from us what we CAN do, not what we cannot do.

LouLou: No one knows how or why onetime we can do a task with little or no problems and the next time it just knocks us down.

murf: I do what I can and thats life

kelly: do any of you kd'ers have problems with vision, eyes?,

murf: Some times it takes me two or three days to iron my shirts

Terryw: not me kelly

kelly: I often wonder if eye problems are ass with kennedys?????

kelly: ok

kelly: //10

murf: Kelly- my eyes are getting worse but I think that is the computer. I'm in front of one all day every day

LouLou: Kelly--I seem to have a burning sensation in my eyes. Not all the time but it is very annoying.

Terryw: yes probabaly

gofr: My brother has a neuropathy somewhat like mine, and he has macular degeneration, but I don't know at that goes with the disease. My other brother and I don't seem to have that, though we wear glasses - but so do most people.

kelly: so much fasicualtions on my face? and twitchin. eye lid mytonia to

kelly: yes me to lou- lou

FL-DON entered the room.

FL-DON: re hi

Terryw: hi don

murf: Kelly - my face doesn't twitch much any more but did for years all the time

LouLou: Do any of you have diabetes also. KD and diabetes makes it a double edge sword when it comes to our eyes.

murf: Hi Don

LouLou: Hi don--Where did you go?

kelly: really murf?? mmmm weid?

FL-DON: <--------- diabetic

murf: Ron - I've been lucky so far

FL-DON: someone @ door

gofr: What did you do to get rid of the facial twitching, Murf?

Terryw: I will be right back

murf: It's your coffee from Kelly

kelly: yeah i had heard that to! that kd and diabetic are sooo common with us??

kelly: lol

kelly: //23

FL-DON: diabetes frequent in kd'ers as we are inactive

FL-DON: also in md'ers

LouLou: Please share your thoughts on what works for you. We can use it or not. Whatever works might help someone else.

kelly: lateron in life loike our golden years???

kelly: soooo true fl-don yup.

LouLou: Kelly--Golden Years--when you give all your gold to the doctors. LOL

murf: LOL

murf: I do that now, what are you saying??????????????/

kelly: Well room i find that strechin the muscles seem to help me with spasms etc but been having alot of muscle spams in my neck? affects my breathing chewing swallowing bigtime not to mention the pain that come with it??

LouLou: You may never have golden years Murf----- Hang in there.

kelly: i wont have golden yrs

kelly: lol

kelly: //35

murf: We have rooms left on the Golden Years KDA cruise for anyone interested!

kelly: I:LL be gone before i reach 65 lol

LouLou: I am so glad so many of you could join the chat this holiday week end.

gofr: I have friends who consume a great deal of diet soft-drinks, and they contain Aspartame, which is worse than bad, and exagerates other problems. Do you not think that many of our problems are brought on by our not being alert to che chemicals that are pushed onto us by big chemical companies?

LouLou: Kelly--where are you going?????

murf: Me too Kelly but I've had a great life!!!

kelly: me ???? lol i never go anywhere. bummer hey? lol

kelly: yes gofr diet is very important to us with kd

LouLou: Murf--it will get alot better. Each day is a challenge.

kelly: lou lou hopefully to heaven lol

denny has left the room.

denny entered the room.

denny has left the room.

LouLou: Just not right away....Right?

kelly: yeah yupper, not now

kelly: am olny 42 now, 43 in april

murf: Ron - I quit smoking in Feb, got a divorce in March and quit drinking in May.......the funerals next month LOL

kelly: Iam a baby kd;er lol

kelly: lol hhahaahahah murf.//1

Terryw: It's so strang to think that the town that we held our last KDA meeting in is now pretty much gone

Terryw: So sad

FL-DON: i feel our problems are genitic. i dont blame republicans, democrats, big companies, small companies, or anyone.

LouLou: I have an above ground pool. I run-walk in the pool. I think this helps the legs because I don't have the impact of walking on the ground.

kelly: do you think they will rebuild new-orleans terry? i think its a done deal hey??

gofr: It is important to not 'ring down the curtain' on ourselves by giving u hope. Perhaps tomorrow a solution will be discovered, and those not around will have missed a great opportunity to enjoy life as they hope to.

murf: Kelly- they will rebuild

FL-DON: we have a 3 1/2 - 4 1/2 deep exercise pool here in sun city center. i walk 2 hours most every day. i feel it helps me keep in shape

LouLou: Terry--thinking the conference in NOL where we were is now gone. So sad.

kelly: u think???? murf mmmm ok.

Terryw: I think they have hopes but in reality it seems like at most it will be limited

kelly: crazzzzzy weather in america thats for sure happy i live in sask lol

murf: New Orleans is too historic a place to our culture here and will be rebuilt

FL-DON: katrina was heading right 4 tampa, but headed west at last minute

LouLou: It is hard to imagine those houses being in water for weeks.

Terryw: It willbe called New New Orleans

FL-DON: but 4 the grace of god

murf: The leves will be built higher!

LouLou: LOL Terry.

gofr: Neurologies are indeed probably genetic, but the curse can be worsened by not doing what we can, and not helped by giving up. Think of people like that scientist who is completely immobilized, but has done great things with his brain regarding things like 'black holes' in the universe, whatever good that does.

kelly: no- offence but u guys president is stupid

FL-DON: stephen hawkins or something like that

LouLou: We have about 8 minutes of the chat left. Does anyone have any concerns we can help with?

FL-DON: kelly, better than clinton

murf: Hay....I'm from Taxes...I mean Texas

kelly: u think? fl-don,?

FL-DON: i take offense, and yes i thinks

kelly: lol well i dont lol

Terryw: bye everyonne. I need to lay back down for a bit

murf: He is Kelly!

FL-DON: lol

kelly: bye terry

wolfman: Lou Lou-- I seem to have a lot of severe sweting going on different times of day

FL-DON: cya terry

Terryw has left the room.

gofr: I could do with a suggestion on how to more easily hold up my head - I am pretty good except when I walk.

FL-DON: bye all, have a nice day

FL-DON has left the room.

kelly: well i got to go to room bye all see ya next chat session

LouLou: Murf--if you are still on line at end of chat--will you save the chat? I must go for now.

kelly has left the room.

wolfman: bye Kelly

murf: Don - I don't think anyone has asked that one before

Gary_KS has left the room.

murf: Ron - I didn't get on untile late so I can only get part of it

murf: Cant you save the first half?

murf: I can get the rest

gofr: I guess that I am an odd duck, but my drop-head accompanies my 'drop-foot'.

wolfman: Take care guys, bye bye

LouLou: I must go for now. Stay healthy till next we chat. OK. Thanks anyway.

murf: Take Care

wolfman has left the room.

LouLou: I'll stay till the end. Thanks anyway murf. I'll get it.

gofr: Thanks, folks - it has been 'a real slice', as my son says .

murf: Don - I hold up my head with my hands but not while I'm walking

gofr: So, Murf, you DO have a problem that way?

LouLou: End Chat

wolfman entered the room.

gofr: I am working on a contraption to help with the head-up problem.

murf: yes but when I'm sitting for a long period

murf: You may make a forture with it,. more than just KD'ers could use it.

gofr: It will probably look stupid, but it isn't great the other way either.

wolfman: it is better than suffering

murf: I'm used to looking stupid but don't care anymore I might buy one.

gofr: I don't suffer with it, but just am not able to function well.

wolfman: got a used scooter last month, it sure helps me get aroung much better.

murf: Now if you can come up with a walking machine.... I'll buy one of them right now!

gofr: A scooter is good - I bought one but haven't had to use it yet - am having a loading ramp made so that it can go into the van.

LouLou has left the room.

murf: I got my chair 3 years ago and use it every day for work. I would not be able to work without it.

gofr: Many say that such an aid has given them back their life.

murf: I agree!

wolfman: I can take mine appart and store it in the trunk real handy to go to the city

gofr: Are they waiting for us to go so they can shut off the lights?

murf: A scooter won't work for me but will work for many and there cheaper

gofr: Why won't a scooter help, Murf?

murf: We can chat as long as we want

murf: I need to get up to my desk at work and I can do that with my chair

murf: If I had a scooter I would have to park and walk up to my desk

gofr: The take-apart machines have a good feature, but one has to be careful, as perhaps they can be tippy

murf: I'd be in and out of it all day

gofr: I am trying to get the picture, Murf - does that mean that you have stairs to negotiate?

murf: What kind of scooter did you get?

wolfman: I have a gizmo in the back that keeps it from tipping

murf: No but I can't pull into my desk because of the controls

gofr: Mine is a four-wheeler, by Medi-Chair, used, but hardly

wolfman: I forget the name for it

murf: I use my chair as an office chair too

wolfman: Yah, that is what mine is

gofr: .Can the controls not be modified so they woud go under your desk?

murf: A chair is already made that way

murf: It's an Invicare Xterra GT check it out on the Invicare website

gofr: My chair would not work that way, as it is an older model, but as you say, Murf, the problem would have to have been dealt with long before now - cost is often a problem.

murf: Wolfman - you can make it to Sylvan Lake in your scooter!!

gofr: How fast will your chair go? Can I gear mine up to go 20?

wolfman: almost, I can go 40 km on 1 charge and that is good enough for around town

murf: Yes you have to look at your needs when buying a chair

gofr: Wolfman goes to Syvan Lake - Alberta?

murf: I can only do 7 mph but built for off road too

wolfman: No, I am in Sundre but I know Sylvan Lake

murf: Not sure if I have your range

gofr: We go that way often - Sundre and Sylvan Lake, on our way from B.C. to Saskatchewan.

wolfman: Got to go, see u next time

murf: Take care wolfman

wolfman: k

gofr: Yesw, it is time -- Perhaps next visit we will have solved our problems.

wolfman has left the room.

murf: Don - are you from BC

gofr: Yes, B.C. is home for the past 30 years - it was a good move, but I should have moved further west where it has shorter winters.

murf: I used to live in Red Deer but now in Houston TX. I can't handle the winters up there anymore

murf: Now I just deal with other bad weather

gofr: Hey, I know what you say - as the garage door technitian says 'I feel your pain!'

murf: We're taking lots of Hurricane survivors here over the last few days

murf: Lots will die from disease now

gofr: I had best beatle off for this time, Murf. It has been great visiting with you- all - better save some for next time. I reckon that you folks have fealt the scatter-gun effect of the big breeze - pretty sad

murf: Take care and we'll talk to you later.