Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"KDA is One SUPER, Non-Profit Organization."

Our Focus Remains on Research, Education and Support

The Kennedy’s Disease Association has worked to educate others about this lesser-known disease and to support clinical research efforts. We distributed information to more than 10,000 neurologists to help them recognize clinical signs and symptoms of Kennedy’s Disease.

Will my child be born with this DNA defect?

It takes an enormous amount of money to fund research…more than any of us can afford alone, but together, we are capable of great accomplishments. We are searching for available foundation grants, but the process is lengthy. We need researchers to continue their work, and it is only the KDA that makes funding this disease a priority.

Kennedy’s Disease Knows No Boundaries...

It is passed on from generation to generation in families worldwide. Males generally inherit the disease symptoms and females are the carriers. The defect is in the ‘X’ Chromosome that makes testosterone almost a poison to his body.

What is Kennedy's Disease?

Kennedy’s Disease (spinal and bulbar muscular atrophy) is an adult-onset “X” linked inherited disease with symptoms usually beginning to appear between the ages of 30 and 50. However, onset has also been reported as early as in the teens and as late as the 60s.

2002 - November 02, Open Forum

Kennedy's Disease Chat Transcript 11-02-02

Topic: General Discussion/Open Forum

Host: Patrick Griffin

Chat Participants:

patrick
chuck
fergi
bsofree
teda
johnm
butch
terryw
don48312
dbenson
murf
pinkie

BEGIN CHAT

patrick -- {welcome patrick}
terryw -- {welcome terryw}
chuck -- {welcome chuck}
butch -- {welcome butch}
dbenson -- {welcome dbenson}
don48312 -- {welcome don48312}
murf -- {welcome murf}
johnm -- {welcome johnm}
bsofree -- {welcome bsofree}
fergi -- {welcome fergi}
pinkie -- {welcome pinkie}
teda -- {welcome teda}

patrick -- Hello, my name is Patrick Griffin. You can call me Patrick or
Pat, whichever you prefer. I'll be the moderator today.
terryw -- hello patrick.
terryw -- LOL
patrick -- Today's chat is about anything you'd like to discuss.
terryw -- Do I know you?
patrick -- Hi Terry. Winter is here. I wish I was in So Cal!
terryw -- It is starting to get a bit colder here also. The bad winds will
start soon.
chuck -- {welcome chuck}
patrick -- I sure enjoyed the conference. It was really great meeting
everyone!
terryw -- I am only going to be in chat for a short bit. I am going to get
my flu shot this morning.
patrick -- I got mine just after the conference. An ounce of prevention
etc etc
patrick -- Hi Chuck! Welcome.
terryw -- Patrick,, did you bring the car back that you bought?
patrick -- No, I'm still trying to decide what to do with the car. I
talked to the Dr. that donated it, and I can keep it there for a while. I
think I might just donate it to another organization in the DC area. Any
ideas?
terryw -- Sell it on Ebay
patrick -- I've thought of that, but I've never done that before and need
some lessons.
terryw -- Hi Chuck.
butch -- {welcome butch}
chuck -- Hi to all - glad to be here..
terryw -- Hi Butch
dbenson -- {welcome dbenson}
butch -- Good morning Patrick, Terry and Chuck.
chuck -- Hey Butch, (this is Anna Lea - Charlie is nicer) glad you found
your way to computer.
don48312 -- {welcome don48312}
dbenson -- Hey Anna Lea, this is Lori, how are you doing?
chuck -- I am fine Lori. We are doing fine. Thanks
patrick -- Hi Butch and Don. Hope everyone is feeling fine today.
dbenson -- Hello everybody
terryw -- Hi Anna Lea & Lori and Don
butch -- Sorry I couldn't be on the last chat about the conference
round-up. Mary Lou and I went to Michigan to see her brother. I thought I
might use their computer for the chat. They are not on line soooo, I
missed the chat.
terryw -- Lori, Hows Duane & Boyd?
dbenson -- Hi Terry: Boyd and Duane are fine. Duane went and was fitted
for cane for help with walking. I think he finally realized that he needed
one after the conference.
terryw -- thats good Lori.
don48312 -- HI ALL
chuck -- I really enjoy the chats more now that you feel you physically
know the ones we are talking with. Again, the conference did so so much
for us.
don48312 -- in 80's here in fl.
terryw -- 60's here in Calif
dbenson -- 15 here in South Dakota and snow.
patrick -- 20s here in Kansas. Yeah, you got to get a stylin' type cane so
you can be cool!
butch -- Hey Lori--Did you get the pictures of you eating the crab? I know
you will just enjoy thew look on your face.
terryw -- Did you all like the pictures I posted to the website?
dbenson -- Yea, just got them yesterday, they are good pictures, Duane got
a laugh all over again and I could prove to my kids that I actually tried
them.
dbenson -- They were great Terry.
terryw -- I posted a picture on the web site of Patrick on the KDA staff
page. It turned out really good. I took it from one of the conference
photos & modified it.
don48312 -- enjoyed sitting next to duane at Gunnings
butch -- I received another request from NIH to go down and give another
muscle biopsy for them. They also asked for myu daughters Anita and
Annette. Did any one else receive such a request?
chuck -- Butch, we haven't heard anything from NIH on that...
don48312 -- <----- NO NIH REQUEST
terryw -- I did not get the request either. I am not registered with the
NIH thats most likely why.
dbenson -- How do you get registered with the NIH?
murf -- what's the NIH?
patrick -- NIH=National Institutes of Health
patrick -- Dr. Fischbeck works at NIH
murf -- oh...
murf -- He has a great web site has anyone seen it?
terryw -- whao has a great web site Murf?
murf -- Dr. Fischbeck
butch -- I received my original diagnosis of KD from Dr. Fischbeck at NIH.
I guess that is why I am on their list. I would hope that they would be
interested in everyone who could give biopsys. I'm sure it could be done
locally for everyone and sent to NIH.
patrick -- I don't know how to get registered at NIH. I know they'd like
some biopsies, and I know there is a specific protocol they follow to get
them. Can anyone one fill us in?
dbenson -- Butch: Could you check on that, Duane would be interested in
participating.
patrick -- I've given muscle and nerve biopsies to my neurologist for his
research. I suspect we'd have to get it done locally and have our Drs
coordinate with Fischbeck to get it frozen and sent to NIH.
butch -- Patrick--I would think that if you call for Dr. Sumner she would
be glad to put you on the list.
patrick -- OK, thanks Butch
chuck -- Dr. Fishbeck diagnosed Charlie, although he was in Philadelphia
at that time (1991). We were also at NIH for genetic counseling with our
daughter about a year ago. Dr. Sumner phoned us about that.
chuck -- I don't know if biopsy would go to Dr. Fishbeck or Dr. Kennedy.
Remember Butch, Dr. Kennedy was explaining to Dr. Sumner how to send yours
and Charlie on to him?
patrick -- The biopsies I gave were really fun. The neurosurgeon who cut
them out couldn't use a local anesthetic because it would mess up the
samples. So they carved a chuck of muscle out of my thigh and a piece of
nerve from my ankle while I tried to think pleasant thoughts... :-0
murf -- {welcome murf}
dbenson -- He had such a good time getting to know all of you and he can
hardly wait for the next one. Some great people in this group.
johnm -- {welcome johnm}
terryw -- Hi Murray
patrick -- I ate better at the conference than I have for a long time!
Afterwards, I took the train to D.C. to visit friends. I think I slept all
day Wednesday!
terryw -- Hi John
murf -- goodmorning:)
don48312 -- Going to see G W Bush at a Jeb rally later 2day
dbenson -- Bush was just in South Dakota on Thursday and will be on
Sunday. Whoopee
terryw -- Don tell W hello
don48312 -- will do tw
patrick -- I got a good picture of everyone takng pictures of us. I'll get
them sent to you Terry.
johnm -- Hi Terry. Good to talk to you again.
don48312 -- MORNING JOHN
bsofree -- {welcome bsofree}
butch -- Terry, The pictures you posted were great. I couldn't believe how
many good pictures you took. Great Job!
bsofree -- Gd morning all. Sorry I am late. Just got back from the
Med-trade show in Baltimore.
don48312 -- lots of trophy girls in pic's
terryw -- I want to thank Johnm while he is in the room for his support on
rearranging these chats for us so we can read the transcrips easier. He
has been doing this for a couple of years now. Thanks John.
don48312 -- i had breakfast with johnm this week
johnm -- Thanks Terry. Sorry about the last one but it got rather
comfusing.
terryw -- It was fine John
terryw -- I would like to meet Johnm
don48312 -- come 2 Sun City Center, FL Terry
terryw -- I would love to don...is that an invitation?
johnm -- Terry, Your welcome in Florida any time. Pauline and I are all
through traveling since my falls on our last trip to Wisconsin. She is
worried about me ending up in the Hospital far from home.
don48312 -- yup, terry, mike john and i will be hosts
terryw -- We will have to plan a trip out.
don48312 -- love to have u 2 here terry
terryw -- I have a bunch of Halloween pics from the other night online if
anyone wants to see them e-mail me and I will send you the link.
don48312 -- lori, judy says hi
dbenson -- Tell her hi back, I hope she is behaving herself.
don48312 -- judy never behaves
dbenson -- How come that does not surprise me.
don48312 -- lol
don48312 -- patrick, did u get all that stuff home from conference?
patrick -- Yeah, that was a surprise. The last conference I went to that
had a silent auction, I ended up with zilch. Anyone need an '89 Mercury
with a scosh over 100 K on the odometer?
dbenson -- Is it in good shape. My daughter was soooo very mad we did not
get that car at the auction but we had no way to get it home. What color?
murf -- Patrick - you could sell it and give the proceeds to KDA
bsofree -- Talking about car, my sister in law has a caddy/convertible, 74
I believe, with less than 3,000 actual miles. It is still in storage in
Ok?
patrick -- Paul, that sounds like a classic!
bsofree -- Pat, actually there is also a motorized air stream RV with
about 70,000 miles on the odo. Mail me privately, if there is any
interest.
murf -- I've sold 44 cookbooks last week at work and Joanne says we'll
sell the rest no problem
terryw -- that is fantastic murf
dbenson -- Great job murf
butch -- Hey Murf__Good job on the cook books. They really sell themselves
once they are presented.
murf -- People are buying cookbooks for the cuase not the recipies
butch -- True--But there are some really great recipes in the book.
don48312 -- if u have the cookbook, try the "oatmeal cake." its my
favorite
murf -- sounds tasty
patrick -- Don, is that oatmeal cake goof-proof?
don48312 -- goof-proof???????
murf -- don that means even I can make it LOL
patrick -- I mean can a baking-challenged guy make it without setting fire
to the house?
don48312 -- judy says its easy patrick
patrick -- I'll try it, Don. Tell Judy thanks.
terryw -- Murf, we cannot dicuss fundraising in detail on the MDA chat
site. Thanks
murf -- sorry I forgot getting old i guess
terryw -- It's OK.
butch -- The one thing the conference did was make everyone aware of the
chat and how much good info can be exchanged. Sometimes it is only a
laugh, sometimes it is about treatment or other such meds.
terryw -- I need to leave in a few minutes to get my shot.
fergi -- {welcome fergi}
don48312 -- tc tw
fergi -- Hi, all
dbenson -- Hi fergi
terryw -- Hi Fernando
don48312 -- welcome my friend Fernando, from Spain
patrick -- Hola, Fernando
murf -- Hi fergi
terryw -- sorry
terryw -- I must be going everyone. Sorry
terryw -- flu Shot
murf -- take care Terry
patrick -- Bye Terry. Make sure they give you a sucker if yuo don't cry
when you get your shot!
terryw -- {goodbye terryw}
bsofree -- Talk to you later during the week, Terry.
pinkie -- {welcome pinkie}
teda -- {welcome teda}
don48312 -- had flu and pnemonia shot 2 weeks ago
butch -- Don--I heard that the pneumonia shot is good for at least 10
years. Is that correct?
don48312 -- i hear 5 years
dbenson -- Supposed to be good for 5 years. I don't think KD patients have
a higher incidence of high glucoses unless they actually have diabetes
patrick -- Butch, the pneumovax is good for 10 years.
dbenson -- Hi teda and pinkie
teda -- Good moring to all from sunny CA
don48312 -- just installed 2 handicapped toilets in home. so much easier
to get up now.
fergi -- One question to all. How are your levels of glucosa?. In my last
blood test was over 150. Could it due to a be a KD patient?
don48312 -- fernando, high glucose due to inactivity, according to my
doctor
fergi -- Thanks, Don. Inever had a level like that. and i do not eat too
much sweet meals
pinkie -- hello everyone, david pinkerton fron ottawa
pinkie -- new at the chat
don48312 -- hi david
bsofree -- Hi teda, which part of sunny CA are you from again? I am from
LA.
patrick -- Hi David. Do you go by David or Dave?
pinkie -- david is better
butch -- Pinkie--Good to have you on board.
teda -- Redwood City near San Francisco
bsofree -- David, I am so happy to see a Canuk with us. I am also a
Canadian, but lived in Quebec for over 30 years and now in California.
Welcome.
pinkie -- hads any one tried a drug called gabapentin
dbenson -- NO that is one we have not tried.
pinkie -- my neurologist gave it to me it helps with cramps/pain
teda -- pinkie what kind of pain did it help?
pinkie -- leg cramps/pain
pinkie -- it seems to do ok
patrick -- I've tried gabapentin several years ago. I didnt have much luck
with it, but if your doc prescribes it, try it, it might work for you.
pinkie -- I have a lot of cramps in my legs
teda -- Mmy pain is in my hip joint area. hurts to sit, stand and lie
down. what other positions are there?
pinkie -- I lived in TENN for 6 years, back just this summer
bsofree -- Teda, always enjoyed your part of the country. But, get a
chance come & visit Terry & (moi) in L.A.
murf -- I'm a relocated Canuk living now in Texas
bsofree -- Murf, which part of Canada? So, you were a snowbird who didn't
know the way to go home?
patrick -- Murf, where in Texas are you?
murf -- Thats me, I look at the snow on TV now, I'm from Alberta North of
Calgary
don48312 -- what is snow??????
murf -- I'm living now in Katy, a few miles west of Houston
pinkie -- we had snow in the air the other day
dbenson -- It is that white stuff that falls from the sky and kids seem to
love it but adults are quite so happy about it. I would mail you some but
think it would melt, some areas got 8 inches the other day.
bsofree -- Murf, my brother & his family calls Calgary home. I still have
Alberta plate on my old Mercedes I inherited from my mother about 10 years
ago.
patrick -- Snow is that white stuff that lands on the roads, causing
amnesia to 80% of the drivers.
butch -- Hey Lori--(Gloria) What did your kids think of the pictures? They
had to believe once they saw the expression on your face.
dbenson -- Oh they thought it was hilarious that I actually tried it but I
had proof. Thanx for the pics.
murf -- Cold weather and ice on the streets did not do me any good
don48312 -- isnt that dandruff?
don48312 -- all trophy girls
bsofree -- Murf, I was in the Houston airport twice this week. It was
pouring rain. I think I rather take dry snow around sub-zero, if they
could guarantee that.
don48312 -- and old men
murf -- People in Hopuston can't drive in the rian either
patrick -- Last week we had rain falling through a layer of cold air. It
covered all the beautiful autumn trees in ice and broke a lot of them up.
pinkie -- ice storms aremore common now
bsofree -- Just a bit of info. I was in the Medical Trade show in Atlanta
all last week to exhibit our Freedom line of mobility products. Show a lot
of very innovative "living aids" products. Anyone interested, please
contact me privately. (Paul Liu)
don48312 -- in FL, we put ice in glass
butch -- Here in Penna. it has been unusually cold for this time of year.
Of course cold doesn't help our conditions at all. I get sore and crampy
during cold spells.
dbenson -- Smart aleck.
patrick -- What ever happened to the long beautiful days of fall I
remember from my youth. Or did I just read about that somewhere?
johnm -- We've had 80's here in Florida until this weekend. I just LOVE
the warm weather.
pinkie -- I wish I could leave canada for the winter
murf -- We've had a lot of rain here lately and flooding in the north
teda -- Don I've seen ice in Tampa, winter of '77
don48312 -- lots of Canadians here in FL in winter
bsofree -- Butch, that's the major reason why I left the North East for
Southern Cal.
don48312 -- really, extremely unusual
murf -- My parents still come down to Texas every winter for 2 months
don48312 -- its gone now teda
butch -- You guys in Florida and California are really lucky to be
enjoying warm weather. You think it is cold when it goes below 60 degrees.
patrick -- I saw an ad for Puerto Rico on TV. The sun and beaches looked
nice. I wonder what the cost of living is down there?
bsofree -- Don48312, lots of Quebecers in your area as well. You could get
around just speaking French (or spanish for that matter).
don48312 -- used to live in frozen MI
pinkie -- I had a friend from Pr, he said it was cheap to live there
dbenson -- Butch: Make sure you tell your older and younger daughters
hello from me and I am still waiting for my birdhouse to intercourse.
teda -- I got real close to the ice cornering on my bike. ended up on the
pavement from the black ice
patrick -- I know they have some good hospitals there.
pinkie -- th
pinkie -- they are making it harder for us canucks to live in the usa
bsofree -- Don48312, land of thousands lakes. MI is really beautiful. I
visited my brother often when he was studying near the Twin Cities and I
was in a litte college in Iowa.
don48312 -- <--- did the black ice thing with car several times
patrick -- On the other hand, I could go diamond prospecting in Canada if
I could just get someone to do the work for me.
fergi -- Here in the mediterranean coast in Spain, arrive all Germans and
noth Eurepeans people retired to pass the winters and also live all year
murf -- I've applied for a green card
don48312 -- MI = Michigan
patrick -- Southern Spain is very beautiful.
chuck -- Patrick, what is the salary for the helper and are you going in
the Merc??
murf -- fergi- I' lived in Holland for 4 years and have seen your
beautifull country
johnm -- Got to go. See ya'all in a couple weeks.
johnm -- {goodbye johnm}
patrick -- It is now 10:06 AM CST. We are now at the half-way point.
pinkie -- bye
don48312 -- gotta go. heading to meet friends at wading pool. good luck to
all and see you in 2 weeks. bye
fergi -- and the wether is like FL. warm temperature all year. Allways
over 18ª C
bsofree -- pinkie, murf, I went through the same process. Contact me
privately and maybe we could share some info. I do have a degree in law,
not that it really matters.
murf -- bye don
murf -- bye John
teda -- bye don
butch -- See ya Don. Can you get served drinks in the wading pool?
pinkie -- how do I contact you?
murf -- warmer weather is better for my health
bsofree -- bye Don..
patrick -- Chuck, that Merc is one of those midget cars that FOMOCO tried
to pass off as real transportation. I think the D.C. beltway might be its
limits.
patrick -- Bye guys
murf -- Halliburton are applying and sponsoring me
butch -- Murf--You said Hilliburton is your sponsor. Is Hilliburton your
employer?
murf -- Yes I'm an advisor for the underbalanced drilling dept.
teda -- warme weather is best for me but not to hot. hot drains my energy
bsofree -- Visite me through the KD site, or my email add:
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
fergi -- Warm weather is better for all us with KD. When my hands are
cold, i can´t do anything
murf -- bsofree - I'll drop you a line
murf -- I know the feeling fergi
pinkie -- I lived in Tenn for six years then the immagreation folks got
tough
dbenson -- Gotta go, just got company. Hope to chat in a couple of weeks.
Behave everyone.
dbenson -- {goodbye dbenson}
bsofree -- Murf, how is the oil industry. In private, one day you could
tell me if the Tar-sand project is really economically feasible. I need
help to decide whether I am going to keep my fleet of gas guzzlers.
murf -- as long as oil stays above 13.50 a barrel. that what it costs to
extract it
patrick -- Where is someplace warm, but not hot and humid; cheap; no
crime; and beautiful scenery?
pinkie -- sound like a nce place
butch -- Hey Anna Lea--Save your quarters--Mary Lou and I will be coming
down to see you. Hope Chas is doing well. Say Hi to Pete for us also.
chuck -- We are waiting and Pete said he is ready. Please let us know
when. Must do this before bad weather...I have the map out and
waiting!!!!!!!
pinkie -- this cold weather has got to go
bsofree -- Pat, in a sauna with a wire in T.V. showing shots of warm
beach, poster girls, etc.
patrick -- Paul, you're right, but add a big dog for safety and
companionship :-)
fergi -- {goodbye fergi}
murf -- Katy is a good place to live. Close to everything and far enough
away that the crime is low
bsofree -- alright folks, it is last in and first out (for my accounting
friends.) I must sign off now cuz need to drive my daughter to her Chinese
class. Have a great week, from Paul Liu in Southern California.
pinkie -- bye paul
murf -- bye Paul
patrick -- Bye Paul.
butch -- So-long Paul. Thanks for the donation of the scooter and chair.
butch -- Paul--The scooter and chair really helped make the silent auction
a success. Thanks to all who brought items to auction.
butch -- You are lucky to have such good friends at work. You must mean
alot to them.
murf -- You're right. They are the best group of people I've ever worked
with
teda -- Have a great day everyone. talk to you in 2 weeks
pinkie -- bye teda
teda -- {goodbye teda}
murf -- KDA people are the best I've ever played with :-)
murf -- bye teda
teda -- {goodbye teda}
teda -- {goodbye teda}
butch -- Ted: Have a good week, stay healthy till next chat.
patrick -- Ted, you gone yet? :-)
butch -- Murf--Has Karol ever added up how much she would have spent if
she had won all of the auction she bid on? Great job of bidding the prices
up.
murf -- Just got company. A freind who comes once and a while to help with
things I can't do any more
murf -- butch - my banker thanks her
murf -- bye all
patrick -- Well, we have a KDA Board meeting following our chat today.
We're beginning our planning for next year and the next conference. Be
sure to send in your ideas on how we can have even more fun next time, and
to help others profit from our experiences.
pinkie -- bye murf
butch -- Good-bye Murf.Stay healthy.
patrick -- Tchuss Murf
chuck -- {goodbye chuck}
pinkie -- gotta go, bye for now
pinkie -- {goodbye pinkie}
chuck -- {welcome chuck}
patrick -- Adios
butch -- Patrick:Can we fill up "the car" you bought and drive to the next
conference? I know it would hold alot of items for auction.
chuck -- {goodbye chuck}
patrick -- It is about 10:30 CST. We still have about 15 minutes left
before we're outta time.
butch -- Good bye Pinkie. How did you like your first chat?
patrick -- Butch, if I could figure out a way to get that car to the next
conference, I'd donate it. It would maybe become a ritual offering each
year to the KDA Gods.
butch -- I was really impressed how organized the conference was. The
board did a great job and we want you to know how much we appreciate it.
THANKS!!!
butch -- It was really great to see so many folks on board for the chat. I
still think it is a great wy for us KDer's to stqy in touch and share
info.
butch -- Sorry for the typing errors. Brain and fingers work independently
of each other.
patrick -- It sure is good talking to everyone. I've been a bit blue since
the conference.Had my house broken into, and also somehow hurt my left
arm- lost almost all its strength and my left hand is numb. That plus the
cold weather dampened my usually indomintable spirits. Thanks for giving
me a much needed lift of spirits!
butch -- Patrick--Hope you heal from the arm problem and also having
someone violate your living area. Are you OK?
patrick -- Butch, between my slow computer, fumble fingers, and Saturday
AM brain, I have trouble typing too. I need to get one of those speak - o
matics that Terry has
patrick -- Yeah, I'm OK. I just feel kind of violated. And my darn cat
just let it happen!
butch -- Well I guess it is time to go for now. Hope you all stay healthy
and happy till next chat. Good bye! RON (Butch)
patrick -- If my arm doesn't get better in a week or so, I'm going in for
some tests.My doc thinks I might have damaged some neural plexus somehow.
butch -- {goodbye butch}
patrick -- Well, with two minutes left, I think I'll call it quits so I
can get ready for the Board meeting. Bye all.
patrick -- {goodbye patrick}
butch -- {welcome butch}
butch -- {goodbye butch}

END CHAT