Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

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Kennedy's Disease Chat Transcript  05-15-2004

Topic:  Open Forum

Host: Terry Waite


Chat Participants:



bugsy: terry can you walk .at all ???

TerryW: hey Murf

TerryW: yes bugsy

Murf: Hey Terry

TerryW: I walk lock legged and on my heels

TerryW: its the only way of my legs give out

TerryW: balance is a real isssue

TerryW: its like walking on stilts

Murf: I hear you

bugsy: holyyy !!!!

bugsy: iam not there yet

Murf: I can't even think about walking without a cane

MICH has left the room.

TerryW: if I bend over to pick something up I have to compensate body weight to balance me or I fall over

bugsy: terry how old are you ??

TerryW: I use a walking stick like for hiking

TerryW: 43

MICH entered the room.

bugsy: ok

TerryW: you bugsy

bugsy: 41 terry

TerryW: my KD rally started showing its face at 32

TerryW: really

Murf: bugsy - whaen were you diagnosed?

MICH: Oops tried to go back some at top of page and got logged off

bugsy: in 98 Murf

bugsy: but started to have problems at age 32

Murf: '99 for me but had symtoms for 10 years before that

bugsy: oic

Best: Good Morning everyone. I am new to this chat room. My young son has recently been diagnosed with KD. Does anyone have information on slowing the process, medical interventions?

TerryW: someone else type, my fingers are tired LOL

TerryW: hehe

TerryW: Hi Best

bugsy: how old is your son,,best?

Best: 14

Murf: Good morning Best

TerryW: Process meaning progression?

Best: yes

bugsy: really and he has kd???

TerryW: Is he showing any symptoms at all right now?

Murf: 14 is a little young for SBMA

bugsy: yes no doubt!!

Best: Yes. There is a long family history

MICH: The Quest Magazine that just came out has isolated what may be causing KD and ALS which may help finding a medicine to deal with it.

Murf: WOW

TerryW: what symptoms?

JoeK: I'm 72 === started twitch in leg 20 years ago

TerryW: Best does he get bad cramps

Best: So far only trembling and enlarged breasts.

bugsy: who diagnosed your son best??

TerryW: my tremor started when I was 21

Best: Cramps seem minimal

Murf: Best - did he have a DNA test to confirm?

TerryW: My cramps started in Jr High

TerryW: I am 43 now

bugsy: i take alot of vitaminsand herbs they seem to help me

TerryW: Best is he going to have the breasts reduced

Best: Yes. He has had DNA testing. We are scheduled to see a genetic counselor in couple of weeks. I have been through the counseling part before with my daughter.

bugsy: me too i have large breasts......i have to get mine reduced but my docyor says its because your out of shape !!!!lol

TerryW: I would say to get the breasts reduced especiallfor a young boy in school, no teasing

JoeK: I have problems simlar to Terry === Older brother died KD 2 years ago

TerryW: Best, also how is his weight

TerryW: No Child deserves to be teased

Best: We are going to try herbal intervention on the hormones first. Medical hormone help is available, but I hesitate to start that without trying a conservative approach. He is still growing. 6'2 and 200lb.

TerryW: I was teased because I was so skinny (no muscles)

TerryW: due to KD

MICH: I was in my teens and a co-captain of the swim team when my coach asked me what size bra I one else seemed to notice though and had some stiffening of calves when walking for a while years later...but other symptoms waited till mid 40's

TerryW: WOW a big kid

JohnM entered the room.

bugsy: yes me too even girls tease me said, i have a small one

TerryW: I guess he won't get teased at that size

TerryW: I would not mess with him

Best: I'm sure he'll have more problems than anyone should face.

TerryW: Sorry Best

Murf: He has support

TerryW: THE KDA is here for him

JohnM: Boy, did I come in at a bad time!!!! Small one is tooooooo familiar to me if it is what I think it is.

bugsy: geee and he so young best

bugsy: he he he

TerryW: JohnM we have a lady in the room hehe manners

JoeK: My brother had a tumor in his breast

Murf: Best - will you be coming to the conference in San Diego this year?

TerryW: Best, you are his mother right?

TerryW: not father

TerryW: I assumed

Best: Thanks. If anyone has information on treatments, I would like to know about it. Yes. I am his mother.

TerryW: Best they are working on a treatment in Japan (clinical trial going on right now)

TerryW: Also other labs around the world are worrying on KD

bugsy: what kind of treatment terry.........

bugsy: meds or what?

TerryW: Lueprolin (testosterone blocker)

TerryW: I think I spelled right

TerryW: It's on our Web site

bugsy: what it do ??that lueprolin

bugsy: ty I,ll check it out

TerryW: I have a large 1MB file on it but did not put it on the web site because it takes to long for people to download that only have dial-up connections

JohnM: Terry, do you know of any trials going on that we could enroll in.

TerryW: not yet john but I would imagine we will see some within the next year or so here

Murf: We learned about this at the last conference. This is why they (the conferences) are so important to me.

bugsy: goood let us know ,when it does terry

TerryW: ask for the file

JohnM: The only thing I'm doing is one Neurontin per day and I don't really see any effect from it.

TerryW: It's in Adobe PDF format

JohnM: 1 MEG isn't too bad. Go ahead and send it to This email address is being protected from spambots. You need JavaScript enabled to view it..

TerryW: Murf did you get all those reports I sent

Murf: Yes I got them

TerryW: JohnM please e-mail me and remind me ok?

MICH: They had a big deal on the national news last nite about doctors shouldn't subscribe neurontin for anything but epilepsy...(seems to work for dry throats??)... as FDA?? hasn't approved it for anything else and company has made a billion for telling doctors to proscribe it for other things.

JohnM: OK Terry.

TerryW: Anyone have any plans for the holiday weekend coming up

JoeK: I have beeb taken testosterone shots for several years

JohnM: MICH, I didn't hear about that.

TerryW: joe the Doc's have found that Testosterone aggravates KD

TerryW: they put out a report

bugsy: whats a testosterone shot and what it do???

bugsy: joe k

Murf: None of us are on Testosterone any more

JoeK: terry seen to This email address is being protected from spambots. You need JavaScript enabled to view it.

Murf: I'm just taking vitamines and donating to the researchers

JoeK: I talk it out with Dr Sondeers

TerryW: Studies indicate that ligand, i.e. testosterone, is responsible for setting in action the toxic effects of the expanded repeat androgen receptor in KD mouse models. This is an important finding that indicates that testosterone may NOT be a good therapy for KD. A reduction of testosterone in this mouse model of Dr. Sobue's reduced the toxic effects of the mutant androgen receptor. However, the use of antagonists (drugs that counter the effect of testosterone) to the androgen receptor are not warranted either, as the accompanying paper on a fly model of SBMA shows that the use of antagonists that promote the transfer of the receptor into the nucleus of the cell (which testosterone does), also promotes disease symptoms. Please see the links to the files below. They are fairly large files and may take a few minutes to download depending on your connection speed so please be patient.

Murf: My screen just went blank??????

TerryW: Joe here is the link to the page with the info on testosterone

JohnM: Mine did too.

JoeK: That Dr Sanders at Duke Med cender

TerryW: I posted a large bit of text

TerryW: do you see it

Murf: no

TerryW: hmm

bugsy: thanks for that info ..terry

TerryW: I posted the text from that page with the link,,do you see the link

Murf: Yes its up above the blank part!

JohnM: Terry, I don't think it likes a large piece of text. I didn't see it either.

TerryW: ok

Best has left the room.

TerryW: best must have clicked on that link

JohnM: Murf, you're right it is above.

TerryW: it will log you out of chat and take you there

MICH: I saw the big paragraph Terry

bugsy: yes me too

TerryW: it will be in the transcript

MICH: But then that part of the screen went blank??

Murf: all except the blank part right? LOL

Murf: Not much said there LOL

Murf: We must have been thinking

TerryW: The main articles are at the bottom of that page PDF files you have to download to look at

bugsy: shaking to much .you hit the wrong key

MICH: Terry, how many for sures have you gotten for San Diego?

TerryW: Not sure MICH, Susanne has the count and she is still in bed

TerryW: I think quite a bit though

MICH: Wish I could say for sure but whether in or out of jobs is a good question

JohnM: I just don't care to travel that far.

Murf: Neither do I but I make the effort, it's always worth it!

TerryW: JohnM I wish you could have made it to to the east side conferences we held

TerryW: Now it the west's turn

Murf: I'm normally in a wheelchair at work but will not be taking it to San Diego, I'll rent one there

TerryW: Yes traveling is hard with KD

Murf: The airlines are very good if you tell them you need assistance

Murf: You can even bypass lines and get special treatment

TerryW: yep

TerryW: be right back

TerryW is currently away.

MICH: MURF have you managed to avoid all the crazy weather in Texas?

Murf: I usually get a chair to meet me at the plane door and they take me past all the lines

Murf: We had some big storms here lately

JohnM: My problem is that I can't get up from the seat in a plane.

Murf: Managed to just get the lawn watered free

Murf: I grab the seat in front of me

Murf: and the arm rest

TerryW is back again.

JohnM: That isn't enough for me Murf.

Murf: or a good looking steawardess

TerryW: John they will assist you

Murf: John - are you in a chair full time?

JohnM: I guess I realize that Terry but I just don't want to put up with the hassle. I'm too dependant on my scooter and wheelchair.

JohnM: I try to walk around the house using my wheelchair for support.

JohnM: I broke my foot two years ago and ended up in a wheelchair for three months and don't want that to happen again.

bugsy: how old are you guys...JohnM and Murf if you dont mind me asken???

JoeK: John that is just being careful. It takes a long time for bones to hell

Murf: 48

JohnM: I am 69 and holding.

bugsy: oic

bugsy: my broken bones arent healing to well .has it to do wiyh KD?? terry/

TerryW: Not sure Bugsy,

bugsy: oic thanks

Murf: I had an operation onmy foot a year ago and I'm still trying to heal

Murf: Maybe there is something here

bugsy: me its been to yrs i have a 12 inch plate and 24 screws and so on

JoeK: I think so

Murf: I used to heal fast

Murf: WOW bad brake

bugsy: yep sure was ..

bugsy: 3 breaks

Murf: I feel the pain

MICH: I've lost quite a bit of use of the fingers on my right hand... seemed that hurting fist vs KD not a good combination

Murf: My right arm and hand fall asleep every night

TerryW: Almost time for the chat to end logging

TerryW: few more minutes, but you are welcome to stay & chat

Murf: I wake up and shake my hand till it wakes up

TerryW: A hot shower in the morning always makes me feel better and gets me going

JohnM: Murf, that has been happening to me also but not every night.

Murf: The only way to start a day Terry

MICH: I fells and cracked a number of ribs so I avoid showers

JoeK: bye to all

bugsy: by

TerryW: bye Joe

JoeK has left the room.