Kennedy's Disease Association

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Kennedy's Disease Chat Transcript  10-02-2004

Topic:  Open Forum

Host: Bruce Gaughran


Chat Participants:




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


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

Stevefu64: lol

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: BUT

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

Stevefu64: ????????

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??

Bugsy: als?

BillfromIL: i'm still thinkin KD

FL-DON: researcher had mice where she reversed the spinal paralisis with kdi

Stevefu64: oh

BillfromIL: not als

Bruce: Have you seen a neurologist yet, Bill?

BillfromIL: several

murf: Don- was it a news show?

BillfromIL: over the last 14 years

FL-DON: yup, news show

Bugsy: mmmmmmmmmmmm

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

Bugsy: oic

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

BillfromIL: fasiculations

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

Bugsy: mmmmmmmmmmmmm

Stevefu64: hows ur legs bill???

Stevefu64: do they tire easly

BillfromIL: yes

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

Terryw: Hello

Bruce: Morning Terry, we have a numbee ... Bill from IL

murf: Hi terry

moseremous: hi terry

Bugsy: yes 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

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

Terryw: spyware

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

BillfromIL: ohhhhhhhhhhhh

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

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

BillfromIL: bye

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

murf: ok

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.

FL-DON: yup

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

FL-DON: yeppers

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

murf: wooow

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.

murf: //6

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

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

Bugsy: This email address is being protected from spambots. You need JavaScript enabled to view it. fl_don.thanks buddy

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

murf: 48

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????

moseremous: lol

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

Coak: Don,

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

Stevefu64: ok

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

Stevefu64: ok

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.

Bruce: Right

Bugsy: well iam going to have some breaky now ....moose meat and bannock .by all gby!!!//28

Bruce: Take care

Peter entered the room.

Stevefu64: bye

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

Coak: Yes..

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

Stevefu64: ok

murf: Disabled get a reduction on school taxes in Texas

Coak: .............then scroll down to last november (I think)'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

Stevefu64: lol

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:'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

murf: LOL

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

Coak4593: 10-4

murf: No conference next year Don

Bruce: END of CHAT