Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The KDA web site is a source of real information and even stories of other guys with the same problem. All of a sudden I was not alone, and also the information about the research going on gave me hope."

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript  05-1-2004

Topic:  Open Forum

Host: Murray Williams


Chat Participants:



  • murf: Good morning BUTCH
    BUTCH: Hi Murf. How are you and Karol doing?
    MICH entered the room.
    murf: I ok. There is a thunder storm coming over the house so If I get throught out of the chat could you save it for me?
    MICH: Hello BUTCH & Murf, how's the weather??
    BUTCH: Sorry MICH--can't remember your first name. How are you?
    MICH: First name is Eric, how are things in PA?
    murf: Morning Eric
    BUTCH: We are having great spring like weather here in PA. Thanks for the ID Eric.
    murf: Very dark and raining here in Houston
    MICH: We went from a little snow two days ago to 80 degrees by Monday
    murf: A nice change!
    murf: Veryone keeping busy?
    BUTCH is currently away.
    BUTCH is back again.
    BUTCH has left the room.
    MICH: Has anyone sent blood in a second time to check on number of nucleotides and repeats...My one and only time was to be definitely diagnosed with KD with 520 nucleotides and 45-50 repeats estimated??
    bugsy entered the room.
    FL-DON entered the room.
    murf: I have not been check since I was diagnosed. Have 48 repeats
    MICH: Bugsy, where are you coming at us from and hows the weather?
    bugsy: good morn
    bugsy: sask canada i have kd
    murf: Morning Bugsy & Don
    bugsy: sunny here today
    murf: Hows the weather in the great white north?
    BUTCH entered the room.
    bugsy: minus 3 last night
    murf: Burrrrr
    FL-DON: partly clowdy and in 80's here in fl
    murf: That's better don
    bugsy: wow
    FL-DON: yup
    BUTCH: Sorry--Logged off and couldn't get back in chat.
    murf: 74 here in Houston but raining
    bugsy: my twin we,ll be a little late
    murf: Welcome back BUTCH
    FL-DON: any of u guys use a nebulizer?
    BUTCH: Hey Murf--I thought you had caller ID and didn't want be in this chat!!! LOL
    MICH: What is a nebukizer??
    murf: No but I use a CPAC machine for sleeping
    bugsy: they said chat would start at 9;30 my time but i guess it started at 830 am my time
    FL-DON: chat scheduled 2 start in 5 mionutes
    BUTCH: Bugsy--where are you from?
    bugsy: canada
    bugsy: sask
    murf: Right we usually start at 9:30 pacific time
    bugsy: city of saskatoon
    FL-DON: cst bugsy?
    bugsy: what? cst
    FL-DON: central standard time
    bugsy: oic
    MICH: Is there a translation for Saskatoon???
    FL-DON: 7:30 = pst, 8:30 mst, 9:30 cst, and 10:30 est
    bugsy: well terry told me 9;30 am my time??
    FL-DON: again, what is your time bugsy?
    bugsy: so i guess it is cst?
    murf: Wow. The Gods are very angry here. If I get thrown out of the chat could some one make sure it gets saved and sent to Terry please?
    BUTCH: We are in daylight time here in the east. EDT
    bugsy: its 833am mow
    MICH: Bugsy, maybe confusion is because we went to daylite saving a few weeks back?
    bugsy: oic
    FL-DON: zzzzzzzzzzzzzzzzzzzzzzzzzz
    BUTCH: Murf--Did you save the chat when you came on line?
    murf: Bugsy - you must be on Sask time LOL I'm origionally from Alberta.
    bugsy: ok we never change our time
    murf: BUTCH - we save at the end of the chat
    bugsy: all other prov does but not us
    murf: That's right you never change do you?
    bugsy: yep
    BUTCH: How are you guys dealing with your everday problems and have you had any major health issues?
    bugsy: i did
    murf: WOW that thunder just about threw me out of my chair!
    FL-DON: BUTCH, same/same here
    murf: I've been talking threw my nose a lot more lately
    FL-DON: we have 7 kd-ers here in sun city center area, and all talk nasally
    BUTCH: Sometimes a challenge has already been met by some of us, so if you have a problem maybe we can help.
    bugsy: i atarted to have fasiculations in my was flabbergasted he wants to see me very year now
    stevefu64 entered the room.
    bugsy: hi bro
    stevefu64: hi there
    murf: Goo9d morning Steve
    BUTCH: Hi Steve
    stevefu64: good morning BUTCH
    MICH: I do alot of talking to large groups of kids and other groups and it seems that I'm getting alot more out of breath lately and tempted to get out of business??
    BUTCH: Bugsy--How did you feel when it happened and did it affect your vision?
    murf: I do some teaching in my business too and get tired when I talk to much
    bugsy: no .started to have mild head aches ............and fell like some one pulling at my eye balls
    murf: I guess that says something LOL
    bugsy: eyes feel tired
    bugsy: all the time
    stevefu64: i think its the muscle's in behind the eye balls that fasiculate and cause;s tired eye
    bugsy: well eye doctor says ...WHO is your neurolist?? he was astonished
    murf: My facial muscles twitch too
    stevefu64: yeah me to
    bugsy: me to
    BUTCH: Hey Murf--You said you get tired when you talk too much. I usually get in trouble when I talk too much.
    bugsy: sometimes really bad
    bugsy: he he he
    murf: BUTCH - Me too, all the time!! LOL
    MICH: Yeah me too... right side of face kind of fallen in... and twitches sometime when I'm talking but I can't feel it doing that... others observe it
    stevefu64: //0 does it affect ur chewing mitch???? as well??
    BUTCH: I seem to be having more trouble eating lately. I get tired of chewing. Hey--This could be a great diet.
    bugsy: yes it works for me
    bugsy: lost 10 far
    MICH: Just eating or doing any activity seems to cause me to breath harder
    murf: Chewing and swallowing is becoming a problem. Yes - good diet
    BUTCH: Did you guys ever notice that when you are having trouble pronouncing wordsm that it gets worse when you yourself take notice?
    duane entered the room.
    bugsy: isn,t that a bummer i have the same problems .and alot of others as well
    murf: Yes that happens to me
    BUTCH: Hi Duane. How are you and Lori? How is Boyd?
    murf: Good morning Duane
    stevefu64: yes i have, BUTCH espicailly when i get excited i have problems with speech
    bugsy: hi d
    duane: hey ya'll
    murf: Duane are you getting this storm?
    MICH: It's weird in my slurring of words, it happens when I'm talking to just one person in a normal voice but not when I'm projecting in a loud voice to a large group or talking on the phone while annunciating
    FL-DON has left the room.
    duane: All are fine. Yes last nite and this morning. Lost power and cable. That's why I'm running late this morning.
    murf: WOW it got here about an hour ago.
    JohnM entered the room.
    duane: I notice the more I speak. Especially if I'm in a hurry or excited, people have problem understanding some words.
    bugsy: where is this storm at??
    murf: Houston
    duane: North Central and South east texas
    bugsy: oic
    BUTCH: Same for me Eric--I guess when we talk softly The weakened muscles are affected. My wife says I talk too loud all the time.
    bugsy: tornado ally..LOL
    duane: Had hail, tornados and heavy rains. 3 people drowned last nite in 1 incident.
    bugsy: awwwwwww
    murf: Flood warnings just went into affect. My weather bug is cherping
    murf: Me too BUTCH LOL
    BUTCH: Morning John M.
    JohnM: Florida only had rain last evening.
    stevefu64: certainatley were luckey we dont have that here hey bugsy
    duane: mine too. Is this open discussion today? What are your thought on lastes finding on SBMA
    bugsy: yep
    murf: Good morning John
    JohnM: Morning all.
    bugsy: we are lucky always alot of fires though
    bugsy: good mornj
    stevefu64: i thiink the chat with dr. liebman was excellant all about the mouse model etc......
    murf: What findings Duane? Yes it's open discussion today
    MICH: Your probably talking about the latest issue of Quest and suggestions of trying to come up with therapy for VEGF?
    duane: growth hormone linked to SBMA,
    duane: that's the one!
    murf: Yes - That was a very good chat. We really appreciate Dr. Lieberman taking the time
    bugsy: is there any meds for this yet??
    duane: Very informative.
    stevefu64: yeah it was the greatest//1
    duane: The last time we had weather like this in may my truck was totaled due to softball sized hail.
    JohnM: We had a little gathering in Plant City, FL last Sunday. Three of us from Sun City Center and one from Orlando. Very nice meeting and live chat.
    stevefu64: no meds bugsy just some that help the muscles spasm;s a little
    duane: And wouldn't you know it I just paid off my current vehicle last month ...LOL
    murf: My van is in the garage and will stay there today
    JohnM: Is everyone doing their monthly computer maintenance today?
    duane: Huh?
    bugsy: what is that?
    BUTCH: How is the 2004 convention coming? I don't think I will be able to attend. How many of you guys will be going?
    murf: Is that the backing up we never do?
    JohnM: Running ScanDisk, Disk Defragmenting and disk Cleanup plus checking for Spyware.
    bugsy: wish i could go but my cpp is not enough
    stevefu64: so from all the kd guys here with differant age groups we all have differant kinda sytoms hey?? some have bulbar some have weakness in lower and upper extremities etc......
    duane: Oh. Ok. sounds like a good habit to get into.
    murf: John - good advice
    stevefu64: yeah duanne i do the clean up once a week on my pc lol
    murf: I'm booked to go but have not got a room yet
    duane: I won't be able to attend either. We begin moving employees into our new campus in Sept. Lots of fun.
    stevefu64: bugsy and i wont be attending cant afford it//8 the conferance
    JohnM: We won't be attending either. I can't do very well with flying. I can't get out of the seats.
    murf: John - I know what you mean. I've not been flying much lately
    bugsy: i cramp severaly when i fly
    BUTCH: It has been such an informative time and I hate to miss it. Just meeting the doctors and researchers who will come up with the cure for KD. Conventions are a learning time.
    JohnM: I'll stick with my van and scooter.
    duane has left the room.
    murf: I need to go, It always uplifts me
    MICH: I would like to make it to San Diego but have to see about whether wife and I are still employed when the time far as symptoms ...the Quest Article about KD and ALS... I disagree about proximal weakness only for KD... distal would seem to be fingers and feet that I am strongly affected by.
    BUTCH: Just making new friends and renewing old friends is GREAT.
    murf: You got that right BUTCH
    stevefu64: yeah mitch with me its both promixal and distal
    murf: I'm weak all over...feet, hands some times brain
    JohnM: Mine is weakness in both legs and arms. I fell getting up last evening. It is really a struggle getting back on my feet.
    MICH: Steve, that's MICH... for born and raised in MICHigan... sorry for the confusion... I'm Eric.
    bugsy: what you mean brain......weak ??
    BUTCH: Hope Duane isn't having weather problems. He signed off pretty abruptly.
    stevefu64: ok
    murf: Me too the storm is very intense here! It's dark as night.
    duane entered the room.
    stevefu64: duanne we thought u had bad weather problems
    murf: How you doing Duane?
    JohnM: Hope there were no problems Duane.
    duane: I'm back, lost my connection.
    bugsy: yor not in the sky yet?
    murf: We just got tornato warnings
    bugsy: ooh my !!
    stevefu64: //9 thats scary hey
    duane: just another May day (no pun intended) in NC Texas. 45 , windy and raining. Glad I haven't planted a garden yet.
    murf: Have been lucky so far (touch wood)
    JoeK entered the room.
    bugsy: hi j
    MICH has left the room.
    JohnM: The bad thing about tornados is that you never know where theyt will hit.
    murf: Good morning Joe, Where are you from
    JoeK: Hi from Greensboro, NC
    BUTCH: Hi Joe K. Where are you from? Have you been on chat before and do you have KD?
    MICH entered the room.
    JoeK: Yes and yes
    murf: Joe - will you be attending the conference this year in San Diego?
    JoeK: I have KD and I hahave ve two cousines that
    BUTCH: I hope the weather doesn't affect you Texans too much.
    murf: I'm in west Houston but north Houston just got it bad!
    BUTCH: Are your cousinds close to your age? Are their symptoms as severe as yoursw?
    stevefu64: yeah just so the room knows bugsy and i are idental twins diagnosed in 1998 were much the same with kd altho bugsy has alot of breast enlargement and sever fascilations as for me its spams in my neck i guess were pretty much the same hey bugsy???
    BUTCH: Sorry---cousins and Yours at the end. Fingers and mind not connected.
    bugsy: yes its just gonna get worse
    murf: Steve - I have the same symtoms
    bugsy: hope they can find a cure.......or somting
    duane: gotta run. take care all.
    stevefu64: ok yeah my neck gets so sore i have to use my shoulders to turn my head
    BUTCH: We know it gets worse so all we can ask that it takes its good old time.
    duane has left the room.
    JoeK: That notall that is not connected
    murf: Bye Duane Take care
    JohnM: I guess it's going to get worse for all of us. We just have to keep doing as much as we can for as long as we can.
    BUTCH: So long Duane.
    stevefu64: yeah BUTCH i totally agree with u there lol
    BUTCH: Your right John. One day at a time.
    stevefu64: u guys excise alot or no????
    murf: John - all we can hope for at this point is to hang on and enjoy life to the fullest while we can.
    MICH: Our spouse have to be super human some times to help us out... no one around too help them lift things... sorry I had to drop out of the meeting for a few minutes as the waffle iron fell from way up in the pantry on my wife's leg... she's bandaged up now
    stevefu64: they say being in a swimming pool is good for the muscles???
    JohnM: Keep as bright an outlook as we can. Depression is not good.
    stevefu64: thats rite john
    bugsy: is every one in this room married or have partners ......mine left me 4 yr ago iam single now its hard to be alone
    murf: Agreed John
    BUTCH: I do water arobics. And run in the pool. I have an above ground pool. Water same depth all the way around.
    JohnM: I guess I
    murf: I'm also single now
    JoeK: I am 72 my brother died 3 years a go with KD, one cousine is about 60 and my secound is about 50
    murf: It's tough sometimes
    bugsy: how did he die joe k?
    bugsy: joe kis your last name is anderson??
    JohnM: I guess I'm one that doesn't believe too much in exercise. My neurologist keeps telling me to do more but I don't listen too good.
    stevefu64: yeah me to john lol
    murf: Water is good exercise Low impact
    stevefu64: yep
    murf: Me too John
    BUTCH: I can only use the pool when the water temperature is not too cold. Cold affects the leg muscles.
    bugsy: i fell 16 feet and broke my fib....tib ankle 2 yrs ago and its still not healed
    murf: I can't handle the clod any more
    stevefu64: yes bigtime for me to i hate the cold the cold totally disables me
    bugsy: does kd have anything to with?
    JoeK: Everything just quit working. He went throu all the miss dianosit
    MICH: I get extremely fatigued just doing ordinary things... both physical and mental... doctor tries to go for underlying problem that I'm not telling him about... but I disagree... thinks it more that stress and physical exhaustion get to me fast.
    JoeK: Hat
    JohnM: Murf, AMEN to cold.
    JoeK: Hate this laptop
    murf: I think all of us are affected by the clod
    murf: cold
    stevefu64: joe did ur brother have alot of atrophy before he passed away
    bugsy: do you sweat alot kd guys??
    JohnM: I'm working on a laptop this morning too Joe.
    JoeK: yes
    stevefu64: ok
    murf: yes but I think it's out of shape related
    BUTCH: I see it is just about time to check out for today. Nice talking with you guys. Stay healthy till next chat. Good bye.
    stevefu64: bye BUTCH
    BUTCH has left the room.
    bugsy: by b
    MICH: The only time I seem to swet is when I get one of those dry throat losing breath episodes
    murf: Bye BUTCH take care
    bugsy: oic me just sweat all the time
    JohnM: I really don't do enough strenuous work to sweat.
    bugsy: ok
    murf: The storm is intensifying so I'm going to save this now.
    MICH: Got to run in a moment... take care all... does anyone have a count of those going to San Diego?
    JoeK: He died with pneumonia
    JohnM: Talk to you all next time.
    stevefu64: bye john
    bugsy: thats what i figger
    JoeK: bye
    bugsy: pneumonia
    murf: Bye MICH & John Take care
    stevefu64: yes they say that lungs are a muscle to???
    bugsy: by
    JohnM has left the room.
    bugsy: well iam going to all
    stevefu64: bye bugsy
    MICH has left the room.
    bugsy has left the room.
    murf: This is the most common way we go...resperatory failure
    stevefu64: yes
    stevefu64: iam a heavy smoker got to quit
    murf: Steve - me too and I think I will very soon
    stevefu64: its hard hey
    murf: I might get an extra year or two
    stevefu64: yep
    murf: very hard!
    stevefu64: how long u been smoking, do u smoke to joe???
    murf: 20 + years
    stevefu64: yep me to
    murf: Not many of us smoke. it's hard at the conferences
    stevefu64: ok
    stevefu64: well i have to go now it was a pleasure bye all
    stevefu64 has left the room.
    murf: Take care Steve see you next time
    murf: Joe you still here?
    murf: I'm saving and logging off. Take care Joe, talk to you next time.