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Kennedy's Disease Chat Transcript 05-15-2004
Topic: Open Forum
Host: Terry Waite
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
MICH entered the room.
TerryW: you bugsy
bugsy: 41 terry
TerryW: my KD rally started showing its face at 32
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
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: Hi Best
bugsy: how old is your son,,best?
Murf: Good morning Best
TerryW: Process meaning progression?
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.
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 wore...no 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 ...lol
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
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
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 http://www.kennedysdisease.org/research.html
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
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.
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 ..lol
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: 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
JohnM: I am 69 and holding.
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
TerryW: bye Joe
JoeK has left the room.END CHAT