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Kennedy's Disease Chat Transcript 10-02-2004
Topic: Open Forum
Host: Bruce Gaughran
Bruce: BEGIN CHAT
Bruce: Mroning Peter
Peter: Morning Bruce
Bruce: How are things in Deautchland (I think I might have mispelled it)?
Bugsy: hey ,,good morning all
BillfromIL entered the room.
FL-DON entered the room.
Peter: they are going on, if you mean my new homepage
Bruce: More Bill and Don
Bugsy: hey mates ...good day eh!
Bruce: I see that we now have a German and French Foum section
FL-DON: GM ALL
murf entered the room.
BillfromIL: Hi guys, newbie here
Bruce: Morning Murray
Peter: I try to come into contact with many other Kenedy's in germany
murf: good morning
FL-DON: hi illbill
BillfromIL: hey Don
Bruce: Bill, we thank you for joining us
Bruce: Bill, I gather you have KD. When were you diagnosed?
FL-DON: strange, no hurricanes 2day
BillfromIL: Thanks Bruce
Peter: and have started to traslate the first reports fron Paul Taylor and Andrew Lieberman
BillfromIL: cant stay long
Bugsy: he he he he .......nope just winter comin
Bruce: I couldn't believe Jeanne when she went all the way across the state to hit Tampa.
FL-DON: did u guys hear about the new discoveries in sweeden?
murf: Hi bill Where are you from?
Bruce: No, what?
Stevefu64: no don??? what is it
BillfromIL: Central IL
BillfromIL: land of no hurricanes
FL-DON: some researchers found a drug that reverses spinal atrophy
BillfromIL: but an occassional tornado
murf: Must be nice
Bruce: Well, while we wait for Don to tell us. What subject do you want to tackle today?
moseremous: where did you hear that don
FL-DON: not sma per say but a great advancement
FL-DON: on the news yesterday
murf: Which researchers?
BillfromIL: I guess I'll just butt right in
FL-DON: dont remember their names
BillfromIL: I haven't been diagnosed KD
Stevefu64: whats the name of the drug they tryed??
BillfromIL: have just about every symptom
murf: No problem Bill we do it all the time
Bruce: Bill, in this forum, there is no waiting. But in at anytime.
FL-DON: suppost to help lou geihrig, etc. drug called kdi
FL-DON: ms also
BillfromIL: my DNA test came back normal
Bruce: Bill, there is a simple DNA test that your doctor can use to confirm KD. The information is on the web site.
Stevefu64: no cag repeats?
BillfromIL: has anyone had a false negative???
murf: Don - Good to see you are ok!
BillfromIL: I'm going to ask for the actual paper results
BillfromIL: but was told over the phone it was normal
FL-DON: kept our heads low for the last 4 weeks here.
Bruce: What were your cag repeats?
BillfromIL: don't know
FL-DON: we were lucky as hurricanes all around us
BillfromIL: they just said normal
Bugsy: he he he he .............huricanes .and cag repeats .........
murf: Some one is looking out for you buddy
Bruce: I gather they sent it to a qualified DNA lab ... so, I would recommend asking for the number of CAGs.
BillfromIL: doc doubts its KD since its so rare
FL-DON: yeppers, also johnm and mikeg
moseremous: come on don, where did you hear or read about the kdi?
BillfromIL: Yeah I'm going to ask for the actual results
FL-DON: told you, on news on tv yesterday
moseremous: oh okay
Bugsy: what do you think you have there BillfromILl
BillfromIL: man i dont' know
Stevefu64: yeah good question??
BillfromIL: i'm still thinkin KD
FL-DON: researcher had mice where she reversed the spinal paralisis with kdi
BillfromIL: not als
Bruce: Have you seen a neurologist yet, Bill?
murf: Don- was it a news show?
BillfromIL: over the last 14 years
FL-DON: yup, news show
BillfromIL: after getting my hands on the actaul CAG repeats
FL-DON: report sounded extremely promising for us kd'ers
BillfromIL: an confirm they are normal
Bruce: I had two DNA tests a year apart and one showed 47 CAGs and the other 53. That is quite a varience, but reflects that testing is not a perfect science.
BillfromIL: i guess i have to go to Barnes in St. Louis
BillfromIL: thats quite a variance Bruce
Stevefu64: myotonia has anyone heard of it been kd related??? myotonia of the hands?
Bugsy: what are ya sytoms bill
Bruce: Bill, do you have any brothers with KD or someone on your mother's side of the family?
BillfromIL: don't know where to begin
FL-DON: not heard of mytonia
Bruce: No, Steve
Bugsy: whats mytonia?
murf: Me either
BillfromIL: main symptom is that muscles get fatigued
Stevefu64: ok cause i have that along with my kd?? my neaurologist said its not related to kd
BillfromIL: its getting slowly worse over 14 years
Bugsy: could be just ..........perhaps ....tired
Stevefu64: mytonia is when u close ur hands and they dont open properly
BillfromIL: little achiness now and hten
Bruce: Steve, muscle fatigue is something well documented and associated with KD.
Bugsy: do you cramp severely bill
Stevefu64: ok Bruce
BillfromIL: no severe cramps
Stevefu64: hows ur legs bill???
Stevefu64: do they tire easly
FL-DON: both my feet stay numb all the time now
BillfromIL: the last year has been the worst downslide
Stevefu64: how old are u bill??
BillfromIL: I have some numbness in my fingers at times
BillfromIL: I'm 43
Bugsy: do you have ...........breathing problems ?...bill
FL-DON: but i still walk in our wading pool 2 hours every day
Bruce: Bill, we are not doctors, but most of us have been poked, prodded and tested in many various ways. We also find ourselves teaching our doctors about KD.
Stevefu64: yes so true hey Bruce..
BillfromIL: my last doc has seen one patient with KD
Bruce: Numbness and loss of the use of the hands are common symptoms for KD.
Terryw entered the room.
FL-DON: we have a mda neurologist who sees 3 kd'ers here
Bruce: Morning Terry, we have a numbee ... Bill from IL
murf: Hi terry
moseremous: hi terry
Bugsy: yes ...here in canada the doctors say to me is it called kennedys disease or kennedys syndrome ..he he he and they look baffled!!!!!//10
FL-DON: hey terry, welcome
Stevefu64: really is he a good nearologist don?
Peter: Hi Terry
FL-DON: she is steve
Bruce: Bill's first DNA test showed normal, but he has many of the symptoms and is concerned.
Stevefu64: great don
FL-DON: we feel lucky
Stevefu64: hello terry how are ya
Bugsy: good morn terrydid you get my email?
BillfromIL: i think what seals the deal is that in the last few months, my right breast has been sensititve and grown a little
Bruce: Bill, Terry and his wife, Susanne, are the founders of the KDA.
FL-DON: we have 3 kd'ers living about 1 mile apart. we get together once a month or so
Terryw: I am ok,
BillfromIL: i was really surprised that th eresults were neg.
Stevefu64: good stuff terry
Peter: I have a question to everybody in the States: is their any "cheap" way (without subscribing) to get access to research reports, that I can translate them and add them to my German site www.sbma.info?
Terryw: Batteling a virus on our main PC this morning
Bruce: Terry, Don has some information about a breakthrough on spinal atrophy.
Terryw: its a shaerware virus
Bruce: So, you still have the bug, Terry. This sounds like a bad one.
Bugsy: hey ...........what can i do or say to get my #$%& reduced ....left side is bigger then the right side .any suggestions?
Terryw: got it again from another site
Bruce: Do you use SPYBOT Search and Destroy?
Terryw: just browsing
Terryw: yes I have that
Terryw: I run that all the time
Stevefu64: sergery Bugsy
Bruce: Have you immunized your PC?
murf: I think I might have the same one Terry
Terryw: my software is scanning & removing it right now
Bugsy: ooo where
Bruce: Afterwards, run the immunization.
Terryw: these viruses are embedded in pictures on websites
Terryw: when you look at a pic it invades
Bugsy: ya spyware is good i have tat one as well and adware
Stevefu64: whats the virus name terry??
Bruce: Peter, you asked a question and I am not certain. Perhaps Terry has a better idea.
BillfromIL: Peter, I think there is a site called Babelfish which may do translation
murf: I think I got mine through advertizment
FL-DON: hey, medical breakthrough is in paper this morning
Terryw: stevefu, there are about 6 of them that spawn
Terryw: what don
Stevefu64: oh,,, ok
Bruce: The drug is called KDI, Don?
BillfromIL: but to get a good translation you may have to pay
Bugsy: what paper fl_don?
Peter: its not my problem to translate, more to get access to the articles
FL-DON: yupo, kdi, on front page
Stevefu64: that new drug KDI??? is it on the market yet
Bugsy: what paper ya looken at boy ??
Bruce: Could you scan it and send it on to me?
FL-DON: for alzheimer, spinal courd injury, m/s als etc
FL-DON: could help us
murf: Peter - we publish as many as we can on our web-site
FL-DON: tampa tribune
Bugsy: oic ........tinagee fl_don
Peter: yes I know!
BillfromIL: well I gotta run
FL-DON: regenerates nerve activity in spione
Bruce: Peter, about once a month I go on the internet and search several engines for anything related to KD. I get lucky occassionally and find something new. Many research reports are published on the Internet.
murf: Some times articals are published that we do not know about
BillfromIL: hope that research gets translated into treatment results soon
Bugsy: yes look at mnd
Bugsy: thats a good one
murf: Bill Take care come back and see us
Bruce: Peter, do you visit the MDA website and look at Quest articles?
Bugsy: never mind all that ....hope they find a cure before i die ....lol//3
Peter: Bruce, can you please give me some tipps, if you find interesting one's - I just started to scan the web, don't know all sources ye
BillfromIL: thanks murf
Stevefu64: bye bill
BillfromIL has left the room.
Terryw: see you all later, I have to get my other machine clean before the KDA board meeting
Terryw has left the room.
Denny entered the room.
Bruce: It must be frustrating for Bill right now. I was fortunate enough to have a neurologist that new about kd and recommended that I see Fischbeck.
Stevefu64: yeah no doubt hey
murf: My brother and i found out at the same time
FL-DON: i like most kd'ers was dx'd with als
FL-DON: scared the )&*(#@!$ out of me
murf: I was lucky Don
Bruce: I can't even imagine.
Stevefu64: yes we are fortunate to have kd and not ALS thats for sure
FL-DON: wife cried for a year
FL-DON: was a rough year
murf: Don - your a lucky man to have her
Bruce: I have often commented that knowing you have something that is degenerative over a long period of time is far better than many other things like cancer, heart disease, etc.
FL-DON: and loves football to boot, lol
Stevefu64: yes Bruce i totally agree with u there
moseremous: i don't know Bruce, is it good to know?
murf: does she have a sister?
FL-DON: buys me season tickets to the buccaneers every year for xmas
Bruce: I think so.
FL-DON: 2 sistewrs, lol
Bruce: I like to know what i am dealing with.
moseremous: i was diagnosed when no major symptoms were present and it hit me like a brick
Bruce: Well, is there any subjects someone wants us group of experts to tackle today?
Bruce: Poor vocabulary and spelling ... wow
Stevefu64: yes how about neck spasms and bulbar etc????
FL-DON: how about hurricanes, rotfl
Bugsy: is there any funding for kd,ers?
Bruce: Okay, Steve, what about them?
FL-DON: mda supports kd'ers
Bruce: Kelvin, funding? What do you mean?
Stevefu64: ok i went to take a drink of water instaed it came out of my nose
Coak entered the room.
FL-DON: i get that lately steve
Bruce: Morning John
Bugsy: money for meds.........scooters etc?
murf: We are not big enough yet to support KD'ers
Stevefu64: yeah me just recenlty
Bugsy: oic....ok ty
Bruce: As Don mentioned, the MDA is our source for many things. Have you contacted them?
Coak: Hi all........trouble getting in here ..again
murf: MDA will put in $2000 and $500/yr for chair or scooter
Bruce: MDA doctors will help with many other things also.
Bugsy: to who ,does that apply to us canadians?
FL-DON: mda will provide anything we need. they also provide $500 annually to get batteries, canes, etc
Stevefu64: a good friend of mine said its our upper nerons weakening??? does it get worse over time like for example will i end up using a treach...
murf: Also free doctors
Stevefu64: if my throat muscles dont work anymore???
Bruce: Steve, possibly. My one brother did.
Stevefu64: omg really
FL-DON: bug, contact the canadian mda for answers
Bruce: There are throat and swallowing exercises that help maintain the muscles.
Bugsy: steve quit smoking ..............lol
Stevefu64: yeah ok
Bugsy: ok .......
Bruce: Steve, but most of us don't or won't.
murf: Steve - I have been dry choking lately
Bugsy: i kink and and spasam at my neck
murf: Me too, back of my neck the most
Stevefu64: is what age do men have to start wearing a treac..... when the muscles no longer work or fun tion properly any info???? from kd;ers
Bruce: I do also, Kelvin.
Bugsy: fl_don email me the link ok ?
Bugsy: to canada mda?
FL-DON: steve, dont think any of us use a trec
murf: I was in a chair from age 46
Coak: One of the guys at the Gettysburg regional conf has had great success with stopping the dry choking....Turn head all the way to one side.
Stevefu64: ok good news
FL-DON: your e-mail address bug
Bruce: Steve, I again caution you not to worry. Work with your MDA doctor and work on exercising the throat first.
murf: I'll try that Coak
Bugsy: yes that works terry told me that a few yrs back
Stevefu64: ok thanks a million BRUCE
Bruce: I believe, and following in John Coakley's shoes, that a positive mental attitude goes a long way in combating KD.
Stevefu64: iam 41 now and been havin some nasil voice problems to but alot of problems with my neck and throat,,,, swallowing etc
FL-DON: got it bug
Bugsy: thank you ther freind .kool fl_don
murf: Steve I've been talking through my nose for years
Stevefu64: really wow how old are u murf
Coak: I talk thru a different, lower, part of my body most of the time.
Stevefu64: is there anything u can do to reslove it????
Bruce: I have also found that just because you experience something right now, doesn't mean you will have it forever. I use to have the choaking in bed situation and haven't experience it for several years now.
Bugsy: me i just had surgery last tuesday
Bugsy: removed all hardware fr my right tib and ankle
Coak: I only remember now what I used to experience
Stevefu64: lol where;s that COAK lol
Bugsy: 2 yrs and 5 months and still not healed .kd i thinks slows the healing down ???
murf: Don't know Steve
Coak: How's the weight program doing??
Bugsy: lost 70% of musle mass on leg
murf: I think so too Bugsy - my foot has been healing for to years on a 2" operation
Bruce: Steve, I also do some neck exercises. Since I began them I have only had cramping twice in the last 2-3 years. Before that, it was pretty painful at times.
murf: It just closed up 1 month ago
Bugsy: ya ...i ask my otha .......he didnt say much about it
Stevefu64: ok Bruce ty
Bugsy: do some chin tucks .....steve they help
Bruce: John, have you heard any good ones lately?
Peter has left the room.
Coak: 10-4, but the good ones can't go here.
Bugsy: well iam going to have some breaky now ....moose meat and bannock .by all gby!!!//28
Bruce: Take care
Peter entered the room.
Coak: Priest puts sign up "The end is near - turn around"..................
Bugsy has left the room.
Coak: Driver & Passanger holler out "Stop with the signs, you religous nut"
Bruce: Well, it has been interesting what we have discussed today. I hope Bill can get some better help from his doctor. It must be difficult for him right now.
Coak: .............................@#$%^ CRASH #$%^&*.................
Coak: Assistant pastor " Think you should just say BRIDGE OUT?"
Bruce: Peter, I thought we lost you for a minute. What are you hearing from KD'rs in Germany?
murf: We've all been there Bruce. I wish him luck
Stevefu64: has anyone had problems with long term dissability,, insurance from there job?? example,,, will a person have it till 65 ?? or will a person be retrained for another job??
Stevefu64: from having kd
Bruce: It depends upon your policy. Most company's try to retrain so they can stop paying benefits.
FL-DON: hi john
Stevefu64: as appose to cancer etccc
Coak: steve..see Bruce's article from last fall on disability
Stevefu64: cause kd is progress and no cure
Bruce: But, with a good doctor and the progressive nature of KD, if you receive it now, it shouldn't be an issue in the future if you work the system.
Stevefu64: ok ty will do that
Coak: Hi Don, How's the weight loss program doing?
FL-DON: john, did u read paper this morning?
Peter: I now have contact to about 10 KDs in germany, but no new informations on research at Ulm, Dr Sperfeld
FL-DON: still -40
Coak: My name wasn't there, was it?
Stevefu64: is it on the kd web page COAK??? THE INFO ON DISS??
FL-DON: sounds like gread advancement in research by researcher in Helsinki
Stevefu64: ok ty
Peter: Got no answer on my last email. they wanted to start a trial after official results from Japan
Bruce: I was told once to consider disability insurance and social security-disability as a business. If you know the rules and work the system correctly as you would your normal job, you should win.
Coak: Go to top right side and click on What's new on the web" in red letters
murf: Steve check for a brake on your house taxes
murf: Disabled get a reduction on school taxes in Texas
Coak: .............then scroll down to last november (I think).....it's by date ....and look for Bruce's name
Bruce: Some of the information shared on these chats (ex. tax breaks in Canada) might be good in the forums.
Coak: Don - The 40 is great. Good for you.
FL-DON: still 60 to go
murf: I don't know about Canada
Coak has left the room.
Stevefu64: i was reallly curious about how diss insurance reacts to a degenerative condition as appose to stroke and cancer etc but will check it out on the kd web page
Bruce: Okay, Texas.
murf: I had to move to Texas. Can't handle the cold
Coak entered the room.
Coak4593 entered the room.
FL-DON: same reason i moved to fl murf
Stevefu64: yeah i would like to live in arizona myself
FL-DON: only ice i ever want to see again will be in a glass
murf: Glade your ok Don. We were worried
Bruce: John, do you have two PC's running and have to sign in twice to chat?
moseremous: i think tahiti would be nice
Coak4593: .....it's listed as 11/16/03 for the SSA/Disability info. Both Word & PDF are there.
FL-DON: fl is great for disabled
Stevefu64: ok Coak thanks a bunch looking forward to reading it
Coak4593: No, I got off to get the SSA info.
murf: Hard to run from storms though
Bruce: two minutes before the end of the official chat ... however, you can stay on as long as you want to talk
FL-DON: conference soon john
murf: Only a few weeks away and I can't wait
Coak4593: I had to sign up AGAIN earlier just to get on....Don't know what COAK4593 is all about...
FL-DON: will try for next years conference
Stevefu64: //0 thanks Coak for the info
murf: No conference next year Don
Bruce: END of CHAT