Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

Kennedy’s Disease Knows No Boundaries...

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.

2003 - December 13, Open Forum

Kennedy's Disease Chat Transcript 12-13-2003

Topic: Open Forum

Host: Bruce Gaughran

Chat Participants:

terryw
bruce
murf
michigander

BEGIN CHAT

bruce -- Good Morning, Rick - it's cold in Georgia this morning. What is
your weather like today?
michigander -- always cold this time of year...but what the speed skaters
expected when they visted this weekend
bruce -- I use to skate and loved it (back in Minnesota). I almost killed
myself the last time I tried skating.
bruce -- Our high is supposed to be only 44 today. That is unseasonably
cold for us.
michigander -- I think growing up as a youngster on the lake in Michigan
skating prepared me for all my falls and surviving without breaking too
many bones
terryw -- {welcome terryw}
bruce -- Hi, Terry. How is the throat?
terryw -- Hello
bruce -- Yah, Rick, skating as a youngster was a blast. We just took our
shovels down to the lake and made our own hockey rinks.
terryw -- I went to the ENT (ear Nose & Throat) doctor. THey ran a scope
down my throat and they think they found what causes the choaking spasms
bruce -- Was it a tear?
terryw -- There was no tear, the acid reflux can feel like a tear or a
lump in that area because it aggravates it and enlarges the area.
bruce -- Well, they can help the acid reflux. How about the fluid
build-up?
terryw -- Its a combonation of things, 1. There is a pooling of saliva
fluids due to the weakness in the throat that causes a small pool of fluid
near the airway opening that will sometimes spill over into the airway
triggering the event. 2. The other is Acid reflux into the same area doing
the same thing.
michigander -- I get choking several times a quarter or several times a
month...just a breeze...or odor...or dryness seems to cause it?? Could be
a weak throat??
terryw -- Yes Michigander, that what the doc told me, the throat muscles
are lax and cause a place for fluids to pool.
terryw -- They gave me medicine for the acid problem
terryw -- I did not want the medicine for the pooling because they say
that it really dries up most of your saliva production and anytime you eat
anything you need to drink water with it to get it down.
michigander -- I take Nexium for acid reflex
terryw -- I have never had Heartburn, he said my acid reflux is the
invisible kind that really never shows major symptoms.
bruce -- They say sleeping on your left side helps acid reflux. Cindy has
it occasionally.
michigander -- That medicine for drying up the pooling would probably just
increase the possibility of my choking because of the dryness...some times
a mint can cause the same problem
terryw -- Bruce they gave me a brochure that says to sleep at a 8-10
degree angle on your back.
terryw -- I think side would work also for it. so that what I choose.
bruce -- Myabe that is why I don't have the problem. I started using a
foam wedge a few years ago (about 12" high) and it has really helped my
dry-choking.
terryw -- bruce thats what I need, where did you gt it?
bruce -- At the hospital supply store. I have also seen them on the
Internet, but with shipping it was more expensive. Check your phone book
for the nearest hospital supply store in the area. They should have it in
several heights.
bruce -- The wedge has a washable cotton cover with a zipper. It is pretty
comfortable.
bruce -- I haven't had a choking spell in bed since I bought it.
michigander -- A lazy boy chair is great if I have a night of overeating
cause reflex
bruce -- When I lived in PA, I use to skate across the parking lot at work
(totally by accident) praying the whole time I wouldn't fall.
michigander -- When the lake would continue to freeze it would give off
the loudest crackling sound and once a friend and I went all the way to
shore thinking it was breaking instead of thickening ... carefully
scooting on our bellies
bruce -- Rick, I know that sound very well.
bruce -- Terry, what is the temperature in central California this
morning?
terryw -- Bruce, its 42 this morning but its supposed to get down in the
20's toninght.
bruce -- I'm watching all the birds this morning outside my office window.
They are harvesting food like it will be a cold-one tonight.
terryw -- This move has really been tough on us both, so many things going
wrong up here and breaking and having to fix things everyday has not
allowed me or susanne time to do much else with her job and me trying to
fix everything. Its a bit depressing but we are trying to get past it. And
when I say everyday fixing things I mean EVERYDAY.
terryw -- We are wondering if we made the right decision.
terryw -- My arms hardly move at the end of each day
bruce -- That is too bad. When we moved into our house we had several
issues to contend with. We found an excellent contractor who became our
friend and he contracted most of the work at cost. What a blessing.
terryw -- I have a good neighbor I made a ggod friend with, Hes 78 yrs old
and a retired farmer and he more energy than a 18yr old. He has been
helping me out a lot. He is a good man, the way neighbors used to be.
bruce -- I can hardly fix anything any more. Too difficut to get up and
around or to put my hands above my head for long.
michigander -- I can relate to hardly being able to move and the arms...I
scared myself to death this past week when for three days my arm would no
longer lift me out of a high rimmed tub and I can't use some high chairs
anymore for getting up
bruce -- Neighbors, friends and family are a blessing.
terryw -- he helped me put in 100ft of ripped up horse fencing. he tied
all the wirs by hand I handed him the stuff, never asked for anything in
return. it took him 3 days.
terryw -- A good man.
terryw -- We are going to take him and his wife out to a very nice dinner
as a thank you.
bruce -- Yes, I know the feeling. David, our contractor friend, droive up
to the house and said this week that he is coming out with a bag of
asphalt to take the small lip out of the driveway. When he sees something
he just wants to fix it.
bruce -- It is hard to believe there are only the three of us today.
Strange.
terryw -- I think a lot of people are not here today because its one of
the last weekends before XMAS
terryw -- running errands
terryw -- There are so many more chores up here that I did not realize.
terryw -- Bruce, if I did not have my neighbor I would be out of luck.
michigander -- Terry, where's up here in relation to where you use to
live??
terryw -- I live in almost smack dab in the center of California right
near the gates of Yosemite Natl. Park.
michigander -- That sounds like the neatest place anyone could find!
terryw -- It is very beautiful. Once we finish getting this house ship
shape it will be nice to relax.
bruce -- Rick, that is one of the problems with KD. All muscle groups get
weaker over time. Where my arms were fairly strong for years, they are
beginning to weaken like my legs.
bruce -- Rick, do you live in a house?
bruce -- Terry, we both have property that requires work. The only
difference is that CIndy doesn't have a job so she has become the putzer
around the yard/woods and she mostly likes doing that kind of work.
bruce -- She is the green thumb in the family.
bruce -- Today she was on the roof blowing off the leaves. I don't even
get near ladders any more.
michigander -- My wife bought a rambler just about a year ago...in Utah
that means a ranch style with a basement...the one level is great!
terryw -- Susanne works for dark morning until Dark night, thats wher ethe
problem lies.
terryw -- her job is major stress right now.
terryw -- so I
terryw -- ve to try to do it during daylight hours
terryw -- be right back chat is acting strrange
terryw -- {goodbye terryw}
bruce -- Rick, that is one of the reasons we moved from PA. We needed a
one-level home. We ended up with a two level, but the master bedroom and
office are on the main floor. I agree. It has made all the difference for
me.
michigander -- No luck with getting help with the neighbors yet and my
daughter is on the go and not much help either...means we get rid of the
big heavy furniture still stored in the garage
bruce -- What does your wife do for a living?
bruce -- Rick, how do you manage getting around in the snow up there? That
became pretty frustrating for me near the end of our tenure in PA.
terryw -- {welcome terryw}
michigander -- We relocated here from Oregon about a year and a half ago
when her plant where she worked in Oregon closed down after 20 years, here
it's the same compamy but with the economy it's scary since they went from
voluntary to manditory layoffs...and she's so far lost her office but not
pay...future???
bruce -- Still only the three of us on today. I wonder where everyone is
today?
terryw -- or should I say walking errands LOL
bruce -- You might be right. This afternoon my sistor and her husband are
coming in from California for a visit.
bruce -- Rick, you have been on every week for the past couple of months.
Let me ask you, what do you think of the chats and how could we make them
better?
michigander -- My regular doctor that probably doesn't know much about KD
has given me prescriptions for a testosterone patch and Viagra...heard of
any negative reactions...I might wait a few months and talk to a Motor
Neuron clinic doctor?
terryw -- Mich, testosterone is known to aggrevate KD.
bruce -- Rick, be careful about testosterone. Recent studies show that it
could cause more problems.
terryw -- they found that in a study.
bruce -- Two voices, one mind (LOL)
terryw -- yep.
bruce -- They use to think it helped, but as Terry said it actualy hurt.
michigander -- Bruce, I was a member of an FSH/limb girdle support group
for about a decade back in Oregon because of 1st being misdiagnosed...I
find it an answer to a miracle that I found KDA's existence!!!
bruce -- I don't know about Viagra, but if it works. Let me know.
terryw -- Mich, they are now doing studies on Testosterone blocking
because it has shown promise in mice. In Japan they are beginning clinical
trial on 80 human individuals with KD.
bruce -- Thank Terry and Susanne for that.
terryw -- you are welcome
bruce -- I had a thought about a topic for one of the future chats...
Something like "Ask the doctor". We would collect peoples questions on one
chat and ask some of our doctor friends for the answers. Then we could
post the answers on the web site. What do you think?
terryw -- Bruce, we are going to use the dial in conference number for the
BOD meeting. I forgot to send out the e-mail.
bruce -- Thanks. I figured so.
terryw -- Good Idea Bruce.
michigander -- Sounds great the doctor questions...not sure how to post
though...and tracking down doctor might take a few weeks.
bruce -- I was also wondering if the researcher we just gave the grant
money to would be interested in joining us on a chat to review what they
are trying to do and talk about other KD items of interest. Thoughts?
michigander -- Super ideas!
bruce -- Rick, we have several doctors on the KDA advisory board who have
been great in sharing their time to help us out.
bruce -- Terry, my thoughts about the researcher coming on a chat might
also spur additional support from KDA associates to help with additional
research funding.
bruce -- Or perhaps the Knock-In mouse reseacher...
michigander -- Have any doctor's or researchers ever wanted to
questionnaire anyone they could find with KD to try and establish
timelines for the progression of the disease and similarities between KD
people
bruce -- Terry - you are on!
terryw -- Murray just e-mailed me and said that the KD chat did not show
up on the MDA site for him.?
bruce -- Rick, Terry must have stepped away for a moment. Yes, the KDA
conducted a questionaire a year ago. The results are almost ready for
distribution to members and researchers.
terryw -- he cant get in
bruce -- Well, that might explain the problem.
michigander -- I had that problem finding the chat at our last meeing
terryw -- It showed up for me
bruce -- For me also
bruce -- I am still amazed the three of us can carry on a decent chat
without running out of things to talk about.
terryw -- on phone sorry
michigander -- Bruce...so you grew-up in Minn, moved to what part of PA
and now are in what part of GA?
bruce -- Exton (Phili), PA and Ringgold, GA (next to Chattanooga, TN)
murf -- {welcome murf}
bruce -- Welcome Murray
murf -- Hi sorry I'm late
bruce -- Murray, now don't give us some lame excuse about not being able
to get in.
murf -- OK must be me this morning :-)
michigander -- I live in NYC and Syracuse when I was a teen so that was
why the interest in back east
bruce -- Rick, I have never enjoyed NYC. Too crowded, too much traffic,
too confusing. Even when I had someone driving me around, it was no fun.
Others love it, however.
bruce -- Ringgold is in the foothills just west of the mountains. It is
beautiful and the people are just great.
bruce -- And now there are four of us on the chat. Murray, take a look
about a quarter of the way down about a couple of chat ideas I came up
with. What do you think?
bruce -- I wonder how many others couldn't log on this morning?
bruce -- Or .... maybe it is me! Perhaps I should change my chat name so
that I don't scare others off.
murf -- Bruce - this thing keeps up-dating to fast for me this morning.
I'll read the transcript later
michigander -- Murray, where are you coming to us from and how's the
temperature??
murf -- I wonder what happened this morning?
murf -- Its 46 deg right now in Houston. cold for here.
michigander -- I'd have to say I loved Mackinaw Island, Michigan and the
Oregon Coast a lot better than NYC
murf -- Whats the weather like in NYC?
bruce -- Now you are talking. They are both beautiful areas. The Oregon
coast is fantastic. We use to go down in the winter and do the storm
watches. It was great.
michigander -- Bruce, where did you do the storm watches from and why?
michigander -- I'm now in Utah but when I left NYc about 30+ years ago
they were having freaky snow like they are now
terryw -- I have to go, sorry, Talk with you all again.
bruce -- See ya
murf -- Terry - talk to you in an hour
terryw -- Murray, we are using the conference dial in mumber for the BOD
meeting.
terryw -- 1/2 hour
murf -- ok see ya
bruce -- We are 44 today in northern Georgia, Murray. That storm you had
is coming our way.
terryw -- {goodbye terryw}
michigander -- So long Terry till next time
bruce -- Cannon Beach
murf -- bruce - it shoun't be that bad but you may get snow out of it.
bruce -- The storm watches were great. Only hardy (or stupid) souls
around. The restaurants were not crowded. We would light the fireplace and
just watch. We'ld then take a walk along the beach or hike the trails at
the park. Fantastic!
murf -- I can't handle the cold weather any more, thats why I moved to
Houston
michigander -- Was that for work or play doing the storm watches from
Cannon Beach...the Navy took me to Coos Bay where I met my wife in 1969.
bruce -- They said the snow is supposed to be north of us. Let's hope. My
sister is coming in today from California.
murf -- Is she flying or driving?
bruce -- Driving unfortanately.
murf -- I hope she arrives safely
bruce -- Thanks. She is planning on leaving again Wednesday when another
winter storm is coming through - timing is everything.
murf -- a very short visit
bruce -- PLAY! I am a swabby also. 1966-70.
michigander -- Bruce, does that mean your a meteorologist??
bruce -- Two tours of Vietnam - once on the riverboats.
bruce -- No - just something we enjoyed doing, Rick.
michigander -- I was Navy 1968-72 in Korea and Oregon...as a Radioman
bruce -- Well, I am going to recommend that we shut down early today since
there is only the three of us. What do you think?
michigander -- Good to talk to you all...ok with me
bruce -- Murray, they just finished a cruise out of NOL and are swinging
by.
murf -- I have to get ready for the Board meeting anyway. Have a good
holiday all.
bruce -- Be safe and healthy. Have a happy holidays.
bruce -- {goodbye bruce}
murf -- {goodbye murf}

END CHAT