Kennedy's Disease Association

Kennedy’s Disease Knows No Boundaries...

Kennedy's Disease Chat Transcript  06-12-2004

Topic:  Fun in the Sun, What are you doing this summer

Host: Bruce Gaughran

Chat Participants:

Bruce
Murf
Terryw
Doughboy
Bugsy
JohnM
Stevefu64
MICH


BEGIN CHAT

Bruce: BEGIN CHAT

Terryw: I am good

Bruce: Okay, it is official, guys. We are chatting this morning.

doughboy: Okay, what are we chatting about 2 day!

bugsy: yes?

bugsy: what?

murf: ok We'll give it a go TJ

Bruce: We can talk about anything. And, we can also talk about FUN IN THE SUN - What are you doing this summer to have fun.

Terryw: I know this may be a personal question but does anyone have a problem with weak Bowel muscles?

Bruce: I heard earlier that a few of you have been fishing recently. Did you catch anything?

doughboy: I am going on a guided trophy hunt for Axis Deer on the Y O Ranch in Kerrville Texas

stevefu64: yes i do all the time terry

bugsy: like what do you exactly mean terry

Bruce: No, Terry. No me.

doughboy: Terry, I do, so does my brother Bill

Terryw: not being able to have the ease of a movement as before to push it out

MICH: I would say weak muscles in most all places

murf: I got a sun burn 2 weeks ago, put on some sun screen (too late) then got an allergic reaction and now I'm on benadryl

Terryw: I guess I have to eat more fiber

doughboy: I am going to have to get some Depends, it happened to me twice last week at work

stevefu64: yes i have that problem bigtime in fact i leak afterwards lol

Bruce: TJ, how are they setting this up for you since I am assuming you can't hike it without some help.

Terryw: Steve, not urine

Terryw: the other

stevefu64: no stools lol

Terryw: yep

doughboy: They are taking me out on a 4 wheeler

bugsy: drink lots of watewr terry

Terryw: I figured others would have the same

doughboy: Terry mine is the stool also, when the urge comes I have about 15 seconds to get on the pot

stevefu64: thats a good question terry,,

Terryw: I can hold it thats not the problem

doughboy: Same with brother Bill

bugsy: usually coffe helps me go in morning

doughboy: I can't

Terryw: problem is getting it out when its not soft

doughboy: My Dr. gave me a stool softener

Terryw: I need to eat more fiber

murf: I hear you Terry!

Bruce: Drink plenty of water - warm or hot water is especially good for that. First thing in the morning is the best time with the water.

Terryw: sorry for the personal ?

doughboy: Will that make you hold it?

Terryw: Back to summer fun LOL, go for it bruce

murf: I drink Tons of tea

bugsy: no problem thats good we can share!!!!!

doughboy: Sure is!

Bruce: We can discuss anything including FUN IN THE SUN

bugsy: summer .mmmmmmmmmmmm what a bummer

MICH: Anyone gone thru a colonoscopy and sigmonoscopy(sp?) down the throat as well...while being put under??

stevefu64: nope

bugsy: yes meee

murf: Yup! not fun

Bruce: Why is it a bummer?

doughboy: We also have jet ski's for the lake but I recently had to give them up as well as my golf.

JohnM entered the room.

Bruce: Morning, John

doughboy: Dr. said my diaphram is weak and I'm straining my chest muscles

Bruce: Is it warm this morning in Florida?

bugsy: to hot cant handle the heat makes my breathing hard ...get dizzy

Terryw: I went fishing last Wed

murf: Golf is a spectator sport for me too now TJ

Terryw: We caught a 2 1/2 lb bukkhead catfish

Terryw: Bull

JohnM: Always warm in Florida.

doughboy: I had a colon done it's not fun

doughboy: Yeah, Murf, but we can still watch it!

murf: Hows the boat Terry?

Terryw: Mich I had a video scope put down my throat while I was awake

murf: That's right

Terryw: Murf the boat is good

Bruce: If I could maintain my balance on the swing, I could probably still play golf.

Terryw: MICH they put it thru my nose

JohnM: Bugsy, heat works a LOT better for me than cold.

doughboy: I had the video scope done also while I was awake it's not bad

doughboy: Mine too, weird wasn't it

bugsy: the one up the arse hurts i had that one done as well........the one down the throat is a little yucky

murf: I had one too and couldn't stand it!!

Terryw: Doughboy, my chest muscles are weak also and at times it's hard to breathe, espesially at the end of a long day

bugsy: but they gave me sedatives

stevefu64: //10 lol

JohnM: Getting ready for the colon thing is worse than the actual process.

MICH: Should I worry about the anesthia (sp?) when they go down my throat?

Bruce: I have fishing and hunting so far. What else are you doing for fun this summer.

Terryw: I had the Proctoscope thing once when I was in my 20's

doughboy: Hey, Terry mine too! Does Muscular Dysterphy pay for any equipment?

Terryw: Don't want it again

murf: What are you hunting Bruce?

Bruce: Eric, make certain your anathesiologist is family with KD. There are certain things they should not do if you have KD.

Terryw: Dough, not sure you may want to contact them

stevefu64: such as what??? bruce

doughboy: I have an electric wheelchair, not using it right now and a electric scooter, but I want a bed that raises

Bruce: I can't remember off the the top of my head. TERRY - did we post that info on the web?

murf: MDA will give you $2000 a year for a chair and $500 for repares

Terryw: The horse should be here any minute. I have to go but I will remain in the room to capture the transcript

doughboy: Thanks, Murf

bugsy: what about us canadians ???

murf: They should help on other stuff

bugsy: will mda give us any?

Terryw: Not sure bruce, but I posted Paul Taylors epdate on research yesterday

Terryw: Update

Bruce: Steve, if Terry doesn't have it on the website, I have it somewhere and can retrieve it if needed.

doughboy: My Dr. joined me up with the MD Association, I did get my handicap license plates the other day

murf: Not sure Bugsy, thats why I moved down here

Terryw is currently away.

stevefu64: u can send to me bt email if u dont mind at This e-mail address is being protected from spambots. You need JavaScript enabled to view it

doughboy: On the may 15 chat when I try to pull it up it says it's not on the URL, how can I get it?

bugsy: i had to log in twice this morn to get in chat ........for crying out loud

Bruce: Anethesia - go to Quest Magazine on the MDA site and search for Volume 7, Number 3, June 2000. The article is called, "Coping with Anethesia - Neuromuscular Disorders Pose Special Risks, but Preparation Minimizes Dangers.

JohnM: Dough, I've got the same problem.

doughboy: Hi, John how are you, I don't think we've met yet!

stevefu64: ok thanks bruce

Bruce: It is an excellent article that I printed and gave a copy to my doctor.

MICH: thanks Bruce

doughboy: I'm in a little town outside of Houston,Tx. called Hockley and I'm 48 years old, still good looking though, HA , HA!

bugsy: iam better looking lol

stevefu64: good stuff.... what about that melbourne study on kd??? where;s that info

Bruce: If you can't retrieve the article, send me an email and I can scan it into a document for you.

doughboy: Thanks Bruce!

JohnM: I'm just fine. I have a scooter and a power wheelchair also. I just got the wheelchair and it didn't cost me anything. Medicare and my secondary insurance took care of it all.

Bruce: The last we heard about the study was that is was being tabulated and should be ready in late June.

stevefu64: ok good stuff

Bruce: We continue to bug the Aussy's about the study.

doughboy: I haven't gone on SS disability yet I'm still trying to work, don't know how much looker they'll try to accomodate me though. I hear rumblings

stevefu64: really why;s that lol

JohnM: So many of those articles get very confusing to me. They seem to go into a lot more detail than I can understand.

murf: I was just told my job was secure

doughboy: That's Great Murf

murf: Lucky I guess

Bruce: John, I agree. At times the reports and articles are written for other doctors and scientists - way over my head. I need a translater.

doughboy: We'll If I can't go back on the street, I don't know if they will put me on a desk job or not!

MICH: anyone into daily exercises as prescribed by physical therapists... I tend to infurate them by ignoring their advice...in thinking just making it thru the day is exercise enough... although I might start trying the breathstroke at the local pool??

murf: You can still hold a radar gun.

bugsy: i wish they would tell the doctors here in canada about kd !!!!! they sure is dont know much about it !!!!!!

doughboy: I don't have the energy for exercising!

stevefu64: doughboy they probabely will offer u a desk job?? or retraining

JohnM: At 69 I'm glad I don't have to go in for a regular job any more. I keep busy helping people with their computer problems.

doughboy: I don't know Steve, I hope so, I love my job!

Bruce: TJ, you need to begin some dialogue with your manager and your manager's manager. Often they have unfounded fears and need to be made aware of the "slowness" of the development of the disease. I was pretty open and honest and told them I would let them know when I couldn't do my job any longer.

Bruce: Murray, I exercise every day - twice a day and believe it helps me.

stevefu64: yeah iam to will be probabely be retrained for a sit down job soon

doughboy: That's just it I did tell them, but the co-workers are griping that I'm getting special treatment and it hurts to hear that

murf: I really should do more

bugsy: well by every one iam going to eat some bannock and moose meat..............hungry

doughboy: What's bannock

stevefu64: lol

bugsy: bread

doughboy: oh!

murf: Lucky guy Bugsy

JohnM: I look at exercise as weakening the muscles and not allowing them to fully return to their original state. I do minor exercises in the morning and evening.

bugsy: by all in room ...............oh i forgot ......tea ttttttooo

stevefu64: lol lmao//2

bugsy has left the room.

doughboy: Hey what did ya'll think about Reagans funeral last night!

Bruce: I find that if I exercise - smart - that I have more energy, better balance, and can keep my weight in line. I also just feel better after I exercise - as long as I don't over-do.

stevefu64: exercise is good

Bruce: I was pretty impressed with the entire event yesterday.

doughboy: Hey Bruce I have been trying those exercises you sent me a little, but I need to build up to it!

doughboy: Wonder what it cost the taxpayers. LOL

Bruce: Take your time and work into them gradually. Perform a few of each and then add more reps as you feel up to it. The key is to exercise smart.

JohnM: I'm driving my neurologist crazy by not doing the exercises she recommends.

doughboy: I'll keep trying! Thanks

doughboy: Has anyone here had their throat stretched with the ballon!

Bruce: My neurologist has made me the poster boy for all new interns because of my exercise program.

murf: I've got to quit smoking

MICH: The exercise where they have you lean against the wall to strenghten the calves always make them cramp instead

doughboy: Well, Murf I smoke too!

stevefu64: yeah me to murf

JohnM: I haven't aything like that Dough.

doughboy: I was wondering!

murf: It's not good for us

JohnM: Murf, Quitting smoking was the best thing that I have ever done.

Bruce: TJ, several people have had their's done, but I can't remember who. Post the question on the FORUM and maybe you will get some responses off of it.

doughboy: No, but I believe when it's your time it's your time, wether you smoke or not!

doughboy: Where's the forum Bruce?

Bruce: I was a 3 pack a day Camel smoker for many years and gave it up - like John, it was the best thing I ever did.

Bruce: One the KDA website.

doughboy: kay

murf: Only 1 pack a day here.

murf: Try to keep it there

doughboy: Okay! Seriously guys how did quitting improve you, did you quit have all the buildup in your throat

murf: for now

Bruce: I still remember when I came back from Vietnam and had to start buying my own smokes again. That hurt!

JohnM: I never did have much of a buildup in my throat.

doughboy: I'm too depressed to quit!

murf: I'm too stressed to quit

Bruce: After I quit, I felt better - smelled better (according to my wife), didn't have the little nagging cough, and when I came down with a cold, - didn't have the bad cough.

JohnM: I don't have a problem with depression either.

stevefu64: i was chatting with a friend from australi his name is allister he;s 69 yrs old. he told me that there;s these 2 guys in there 80;s who still are quite mobile and they have kd,,,,, he said that theses 2 guys can mow a lawn the size of a football feild lol with a push lawn mower... i dont think i beleve him tho

Bruce: Also, my lungs are stronger. That is something I can say for sure.

doughboy: Hooray, you had will power Bruce, I'm lacking in that I guess!

murf: TJ - My van is a smokin' unit

Bruce: Also, financially speaking, it cost a lot of money to smoke because I don't do anything in moderation.

doughboy: Hey, that's try I spend about 100.00 a month on smokes

doughboy: true

murf: Me neither Bruce

murf: //14

doughboy: I don't know whats wrong with my spelling today, fingers are not going where i want them 2

murf: That happens sometimes TJ

stevefu64: does anyone suffer with anxiety attacks ????????

JohnM: After quitting, you sure can tell when someone else has had a cigarette.

Bruce: Did you hear the one ...

Bruce: > Two Arab spies meet in a bar in downtown Los Angeles. > > One starts to greet the other in Arabic, their native > > language. The other puts his finger to his lips, cautioning > > him: "Shhh! We're in America now. Speak Spanish."

doughboy: Yeah and I noticed here lately when I'm saying something I'm getting my words crossed up! Worries me!

murf: LOL

doughboy: LOL

doughboy: Mich, where are u from!

Bruce: Steve, only if locked in an elevator without the lights, or, if I am on the floor with ten people holding me down, or locked in a room without any air movement. Otherwise, no.

stevefu64: doughboy the lungs are a muscle to

MICH: Not exactly anxiety attacks but fatigue both mentally and physically from time to time...also a exciting movie can wear me down in a hurry

doughboy: I know, what do we do?

stevefu64: oh ok was just curious cause the lungs are a muscle to

stevefu64: maybe atrophy

doughboy: That's what the neurologist told me!

MICH: doughboy, I'm from early years in Michigan then New York to Oregon and now Utah

Bruce: Steve, are you referring to claustriphobia (spelling)?

doughboy: Wants me to see a speech theraopist, do any of u c 1

stevefu64: nope

stevefu64: bruce

doughboy: Is it preet ther, Mitch

murf: I was supposed to but didn't

doughboy: pretty there

JohnM: I don't do speach therepist. My wife has trouble understanding me sometimes though.

doughboy: Mine too at times, hell, I can't afford all of these Dr. visits

murf: That's what wives are for

Bruce: John, how is the PC repair business these days? Keeing you busy?

doughboy: Mine does a lot for me, she's the best ever!!!!

stevefu64: yep i agree with u there murf

MICH: I've seen a speech therapist at he ALS Motor Neuron clinic...tell you to anunciate and practice inhaling and letting air out in stages to build up breathing strength

JohnM: I see where a lot of us can't keep our fingers working properly.

doughboy: Yeah, I'm sorry!

murf: Your a lucky man TJ

doughboy: I sure am Murf

JohnM: Bruce,

Bruce: Yes

JohnM: Bruce, It runs in spurts. Sometimes I can't keep up.

doughboy: Hey Murf, my daughter does a lot for me too! Bless her heart!

Bruce: Well, we never did go very far with our topic for today, but I always find the Open Forum more fun anyway.

stevefu64: yeah me to

stevefu64: open forum is the best

murf: TJ - you got it made bud!!

doughboy: At least we are visiting bruce, makes me feel better, talking to all of you!

Bruce: Steve, do you still have your parka out or did you pack it away for the summer?

JohnM: Dough, AMEN to that wife thing. Mine is great also.

doughboy: Thanks, Murf

stevefu64: lol still have it nooo actually i put it away now lol

doughboy: What would we do without them JohnM?

Bruce: Silence is golden

JohnM: It would make things much more difficult.

stevefu64: 1 more year of dissability???? then ill have a defination change.... wonder what will happen then

doughboy: When will be the next time that we have a dr. on the chat line with us, Bruce?

Terryw has left the room.

murf: I don't think we have one scheduled for a month at least

Bruce: Out goal is to have someone at lease once a quarter. I am not certain who will be the next 'expert', but we will talk about it today at the Board of Directors meeting.

doughboy: oh!

doughboy: I take it your on the board? Do you do this by computer too?

Bruce: You can find the most recent update from Paul Taylor on the KDA website. He is really good about keeping us up-to-date on the latest research.

Bruce: Phone

doughboy: Oh! I see. Conference call!

murf: Bruce is one of the hardest working members of the board

JohnM: Got to be going. Talk to yhou all next time.

Bruce: Paul is one of the doctors we provided a research grant to and he really works hard at keeping us informed as to what is taking place.

murf: Bye John take care

Bruce: Take care, John

JohnM has left the room.

stevefu64: amen to everyone on the board

doughboy: I don't doubt it, he seems well informed and always ready to help someone. Bless you, Bruce!

stevefu64: bye john

doughboy: bye john

Bruce: We are blessed to have a good Scientific Review Board who we can go to for help, questions, support, etc.

stevefu64: yeah thats wonderful stuff bruce

doughboy: Yeah, but I'm sure you put a lot of effort in it also!

murf: We've come a long way in 4 years

Bruce: Thanks to people like John, Murray, Terry and Susanne.

murf: We can thank Terry for this opportunity to chat

Bruce: In the near future, we hope to start publishing some of the information from the board meetings so everyone can see what takes place behind the scenes.

stevefu64: sure have i remember when kd ass..... was small now it has all kinds of visitors and such not to mention busy

doughboy: Men, it's been a pleasure, but I do have to run if any of you want to email me , my email is This e-mail address is being protected from spambots. You need JavaScript enabled to view it , feel free to! I gotta run, Bless all of you and have a great day!

Bruce: Take care, TJ

MICH: I can't imagine there being any other more intense MD diseases with such a thorough website

murf: see ya TJ

stevefu64: by tj

doughboy has left the room.

Bruce: We are declining in population quickly. It must be a nice day outside.

stevefu64: to much rain here lol

murf: I got to go too. Natures calling

Bruce: I miss the beauty of Saskatoon. It is a wonderful place with great people.

murf: Bye guys! have a nice day

stevefu64: bye

Bruce: Talke to you soon, Murray

murf has left the room.

Bruce: Are there then were three.

stevefu64: bruce how old are ya???

Bruce: 57 and never been kissed!

stevefu64: lol ok

stevefu64: still quite mobile??

Bruce: I have two brothers (one passed away a couple of years ago) with KD.

stevefu64: lungs or what

MICH: Steve, how old are you, I'm 57 too!

stevefu64: iam only 41 young

stevefu64: and on dissability

stevefu64: from work

Bruce: Broke a leg in a fall and had complications from the operation. Three months later he was gone.

stevefu64: holy crap omg

Bruce: It was sad...

stevefu64: how old was he at the time of passing

Bruce: 67

stevefu64: oh ok

stevefu64: that must;ve been the anathsatesia hey????

Bruce: My older brother, Kerm, is 70 this year. He is doing remarkably well for someone with KD. He is my role model.

MICH: Bruce, were your brothers in the Navy too?

stevefu64: good stuff bruce

Bruce: That was part of the problem, yes. Mostly, because no one knew what to do with someone with KD.

stevefu64: ok

Bruce: No, one in the army and the other in the AF.

MICH: I was in the Navy 68-72...Korea and Oregon

Bruce: Guys, I have to go. I have my cat clawing on my arm. It is time for lunch. I enjoyed talking with you. Stay safe and healthy.

stevefu64: wow

Bruce: END CHAT