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Kennedy's Disease Chat Transcript 06-12-2004
Topic: Fun in the Sun, What are you doing this summer
Host: Bruce Gaughran
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!
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
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??
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
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
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.
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
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.
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
murf: Me neither Bruce
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!
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
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, 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: 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.
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
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
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
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.
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.
Bruce: END CHATEND CHAT