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 12-28-02

Topic:  Open Forum

Host: Terry Waite


Chat Participants:




terryw -- hello yves
yves -- are you
terryw -- I am good. How are you?
yves -- I am a bit tired today..heart problem...irregular rhythm
terryw -- Sorry to hear that Yves.
yves -- But I am better this France
terryw -- I must come to France some day.
billeric -- {welcome billeric}
terryw -- Hello Bill
billeric -- Morning Terry. In case I disappear about nine Terry it's cause
a repairman is knocking at the door. Solar hot water heater on the fritz.
terryw -- OK bill
terryw -- {welcome terryw}
terryw -- Bill, How have you been?
billeric -- Not too bad Terry. I can notice a few things not quite so
good. Overall I won't complain. How about you?
terryw -- In winter I always feel as if I am weaker.
terryw -- I love the warm summer.
billeric -- Cold weather just is bad for my hands. Can't do buttons or
anything that takes coordination
yves -- Its France the weather is
snow...all flower are in bloom
terryw -- El-Ninio
terryw -- Has anyone here ever had a Hernia?
yves -- No hernia...
billeric -- I have never had one Terry
butch -- Terry--yes I had a hernia. It is a very simple operation and easy
to fix.
billeric -- I expect we are all subject to hernias. With our leg strength
low we work much harder trying to do things.
terryw -- butch I had a hernia operation about 9 years ago on my left
side. They installed a mesh screen on that side. my muscles have now
wasted away around the mesh on that same side and I think I may have an
intestine bulge again because when I stand and look down the left side
really bulges out.
terryw -- I think I may need corrective surgery
butch -- As long as there is good muscle on that side they can put in a
larger screen for that area.
terryw -- I hope not the last surgery was really hard on me
terryw -- I think now at least they can do laproscopic. I am not sure .
Last time it was a 3 inch incision
butch -- I think all of us have bulging stomachs--That is why I am
designing the " bell bottom "shirts for us who have this problem with KD.
billeric -- Right on Butch. The banded bottom shirts were made for us.
terryw -- Butch,, I have noticed that when KD individuals stand they tend
to use stomach muscles to hold their upper body upright because the back
is weak. So we press out our stomachs. I think if I can get my back a
little stronger I can help that out.
terryw -- I hope more join the chat today.
billeric -- Think we are a bit early, more will join.
terryw -- Yes
yves -- a lot of KF people are in Florida these days
yves -- KD
terryw -- Yes, Florida is warm
billeric -- My feet are still giving me grief. Going to try a different set
of arch supports.
terryw -- Bill, Heels sore?
billeric -- Seems like the whole bottom of my feet hurt.
terryw -- I am starting to exercise a bit to strengthen the lower back.
billeric -- Sit ups or something more tech.?
terryw -- I looked up a few sites on the Internet for lower back
strengthening exercises I can do because I notice when I walk that my lower
back is weak and if I can strengthen those muscles it may help.
terryw -- here are some links to the back exercise websites I found
terryw --
billeric -- Thanks Terry. I was going to ask.
terryw -- you are welcome. You may want to talk with your doctor before
trying any of these.
yves -- I have the same problem with my much time on the Internet
butch -- yves--I think when we get on our PC's we tend to slouch instead
of sitting up when typing or just surfing.
butch -- Terry--I think you are on the right track by trying to
strengthening the lower back. I think weak back muscles cause alot of my
posture and walking problems.
terryw -- yes butch, I will let you know my progress
butch -- {welcome butch}
terryw -- Hello butch
yves -- Hello butch
butch -- Good morning to all from PA. It is about 19 degrees with about 8
inches of snow on the ground.
butch -- Hi guys. Hope all had a merry Christmas. Have a safe and happy
new year.
billeric -- Oh, who needs it Butch. Should be about 65 in Phoenix today.
stompy -- {welcome stompy}
terryw -- Hello Stompy.
yves -- Hello...stompy
terryw -- Stompy where are you from?
stompy -- I'm in Ohio Terry
stompy -- HI All.I just stopped in to see what was going on..I run the
LGMD Dominant Chat on Saturdays
stompy -- Limb Girdle Muscular Dystrophy Yves..We are know as the LGMD 1A
stompy -- 1 means dominant and A meand first gene Identified Yves
terryw -- thanks for stopping by. we usually have a larger crowd.
billeric -- Good to have you aboard Stompy
terryw -- holidays I guess?
stompy -- I came over to grab our transcripts from last week and seen
there was a chat
butch -- Hey Bill I think we need fashion designers to walk in our shoes
for a day. They will make buttons easier to use and clothes that are more
comfortable without getting clothes two sizes larger than we need.
terryw -- buttons are very hard now for me especially if the holes are
real tight with the button
billeric -- I agree. Buttons on jeans are terrible for me.
terryw -- I have changed my jeans to one button with the zipper now
terryw -- no more button up
billeric -- How many known LGMD ers are there, Stompy?
stompy -- Billeric there are over 500 members in our family with LGMD..we
are the dominant form..there are actually several forms of LGMD many are
recessive though
stompy -- Can someone explain KD disease?
stompy -- Ive never heard of this one
terryw -- Kennedy's Disease is a rare, progressive neuro-muscular disease
with no cure or treatment.
terryw -- The symptoms are similar to ALS/Lou Gehrig's Disease but are
much slower progressing - muscular atrophy, impacts speech and swallowing,
enlarged calves, sometimes enlarged breasts, muscle cramping, twitching,
terryw -- There is no cure or treatment for Kennedy's Disease as this
time. Only some medications to help relax muscles or to relieve pain.
stompy -- Yea Our has no cure or treatment too Terry
butch -- What do you mean no cure...A cure is just around the corner. I
know the good Drs and researchers will find a cure soon!!!!
terryw -- We are very hopeful for a cure soon.
stompy -- Butch,the cure will come,but from my understanding,those of us
affected with the MD's now will not be cured,when the damage is done,its
done,We can only hope for the future to have the cure
stompy -- Future generations that is
terryw -- It is an X-linked disease inherited through the mother. Men with
the affected X show signs of the disease, while women, generally, are
carriers. Although we have had some women state they have shown symptoms
stompy -- Wow that is something about the women being the carriers and
not showing the disease..for many generations the Woman carried the
disease in our line and the men got we have more woman with the
disease then men
stompy -- OHH an x linked..we are autosome x linked,it only takes
one parent to inherit the disease
terryw -- It is a lower-motor neurone disease.
stompy -- I was seeing something about back strength,do you get an arched
back with this?
terryw -- Many men tend to stand with their stomaches out, and "arched"
back - I think it is because the back and stomache muscles are weakened
due to the disease.
speedy -- {welcome speedy}
terryw -- Us also.
terryw -- Hi Speedy
billeric -- Terry, how many known KD ers are there know?
billeric -- know= now
terryw -- 1 in 40,000 is estimated. We have 550 in out database registered
with the Kennedy's Disease Association. Our website is
terryw -- lots of good information there
stompy -- on the site now
speedy -- hello I have had my computer down for a while everyone ok?
stompy -- I just recently received notification from Duke University,that
they will be able to do DNA testing to find those with MD.Which means
even a newborn can be tested
terryw -- {welcome terryw}
yves -- I read your statistic report...interesting...sorry that only 37
KD responses
terryw -- yves the survey was very long maybe that is why
yves -- May be to much question...not really involve with KD disease
terryw -- yes yves, we tried to gather as much information as possible and
by doing that may have made it to long for most to want to answer.
butch -- Stompy--Thanks for all the info on LGMD. We need to be aware of
others with similar problems so researchers can share info to find that
yves -- Its our goal in link together a lot of different
disease...with about the same proptéines ^roblèmes or similar problems
terryw -- thats a good idea yves
stompy -- both these diseases sound similar,with the exception of the
terryw -- yes stompy
billeric -- I think all of us are looking for common symptoms and that
just doesn't exist. Tough for researchers.
stompy -- Oh and the males getting this disease.ours doesn't care if your
male or female.There is alot of great information on your site
terryw -- thank you stompy.
terryw -- bill, I think we all have common symptoms its just that the
severity differs greatly. what do you think?
billeric -- I guess you said it better than me Terry.
terryw -- no bill, you were also on track with that comment.
terryw -- stompy do you have a web site?
butch -- Terry--Thanks for host9ing this chat. I know originally there was
not going to be a chat today because of the holidays. Thanks.
terryw -- butch, we will have an updated chat schedule & topics later this
stompy -- I often wonder how they come up with the names for all the
different MD's
butch -- Many times the disease is named for a very famous person. KD is
named for Dr Kennedy who was instrumental in discovering this disease. So
Dr Kennedy and Terry Waite are our famous people.
terryw -- Me famous? no.. The only thing my name is famous for is being a
billeric -- You mean an awful lot to us Terry
terryw -- Susanne does most of the work anyways. I do what I can but I get
tired easily.
terryw -- thank you Bill & Butch.
terryw -- Susanne is upstairs right now working on a lot of next years
butch -- Every group no matter how large or small needs a leader. So
whether you want to be our leader or not--your it...Thanks.
terryw -- butch, we also have the KD board that is helping out a lot as
you know but it is hard when we are spread so far apart and the main
office is here.
butch -- With the two additional board members is this enough? If not you
all will have to delegate more.
terryw -- yes butch, but a lot of the work is here in the local office.
terryw -- thats what makes it so hard.
terryw -- We need to find some local volunteers because the workload is
becoming very heavy and Susanne still has her regular job.
terryw -- We are going to put out an ad I think.
billeric -- Terry, I think we all feel bad that you and Susanne are
carrying such a heavy load. I suggest a topic at next years conference
terryw -- Do not feel bad, It is something that has to be done for all
affected with KD and the future. whenever the load gets heavy we keep that
in mind.
terryw -- We never imagined the KDA would grow so fast.
terryw -- We are trying to go forward as best we can with the resources
available to us.
billeric -- sorry, a topic be just that. What can you delegate?
terryw -- I know that John Coakley will be forming this years conference
committee. He will need some volunteers.
butch -- I know the distance between our board members is great, but, so
are all the accomplishments you all have made over the last couple of
billeric -- We are certainly not complaining Terry. Only a couple years
ago we had nothing.
yves -- If why...we have constructed the ..with your
stompy -- Yves I know of a couple of other families in France,that have MD
as well and they say there is not much available over there for help,is
this true?
yves -- Yes...We can help them to be in link
yves -- the french name is
stompy -- Ok got it yves
stompy -- Well I guess I better get back to my site and finish editing. if
anyone would like to check it out its.
stompy -- Ill keep this chat in mind..i would like to learn more
terryw -- thank you for visitng stompy
billeric -- Thanks for chatting with us Stompy
stompy -- have a good day all
stompy -- {goodbye stompy}
butch -- stompy--thanks for your interest in KD and sharing info.
yves -- Your new site ist very well terry..did youmade it alone
terryw -- No Yves, designed it for us with the KDA team
reviewing the look. I transfered all the content to the blank site pages.
yves -- O.K good job...Where will be hold the next KD conférence next year
terryw -- Yves, we beleive it will be in New Orleans. We will have a final
vote on the location next board meeting.
yves -- O.K I hope...if I be with you..and also meet some people
from NORD
yves -- Where are located NORD
terryw -- that would be good Yves
speedy -- Sorry guys got to go catch you next time. I'll get the
butch -- So long speedy. Stay safe till our next chat.
terryw -- bye speedy.
speedy -- {goodbye speedy}
john -- {welcome john}
terryw -- hi john.
terryw -- John, where are you from?
john -- I am from Los Angeles
terryw -- hi john,, I know you I think? seeing you on the 4th?
john -- Yes, looking forward to it.
butch -- I still think the MDA needs to educate more Drs about KD so that
misdiagnoses does not happen as much as it does now. We are trying to
spread the word. Our brochure is a great tool to do this.
terryw -- yes butch the KDA plans to do that mailer 1st qtr 2003. We did
not get the grant that we applied for for $4,000 but we will find a way to
do that mailer.
terryw -- we need to get this information out.
terryw -- We need to get some kind of public spotlight to get attention.
terryw -- we have a man running in the L.A marathon in March. We plan to
do a press release.
terryw -- We are also trying to put together a golf tournament in may for
yves -- I have to go now...have a good new year...from France. see you
terryw -- bye yves
butch -- Well I must sign off for now. I hope all have a very happy and
healthy NEW YEAR. See you all next chat (next year).Bye.
billeric -- See you folks. Solar repairman on the roof. Got to supervise.
Happy New Year. Thanks Terry.
billeric -- {goodbye billeric}
butch -- {goodbye butch}
terryw -- bye bill, butch.
john -- Terry, are you still there?
terryw -- yes John I am still here.
terryw -- John, how was your holiday?
john -- Very nice. Topanga and Pasadena.
terryw -- we will be in Pasadena for the rose parade. this will be my 1st
time ever.
john -- I've lived in Los Angeles for 34 years and never been to the
parade. Do you have reserved seats?
terryw -- One of Susanne's clients has a patio party on Colorado blvd and
invited us to the party.
terryw -- same here john. we are natives and have never been.
terryw -- 5 mins until chat closes automatically
john -- Very nice. Sorry t o have arrived late to the chat. How has it
terryw -- it has gone well. A bit low turnout today but it's probabaly
because of the holidays.
terryw -- John, they have reserved bleachers right on the blvd.
john -- I'll call you later this weekend and see you soon!
terryw -- We wish you all a very happy and healthy New Year!
terryw -- Ok john, Thank you
terryw -- See you all next year.