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 11-18-02

Topic:  Carriers Support Chat

Host: Ronni Bartlertt


Chat Participants:



renee -- {goodbye renee}
johni -- {welcome johni}
johni -- Hi everyone, had great difficulty getting in today
butch -- {welcome butch}
johni -- Looks like I'm the only one here! I'll give it a moment or two
and then I'll go.
ms-ronni -- {welcome ms-ronni}
mikeg -- {welcome mikeg}
mikeg -- Greeting from rainy Sun City Center, FL
ms-ronni -- Sorry to be late had to work this am
ms-ronni -- Hi to all from gloomy michigan
johni -- Hi Mike, where is everyone?
butch -- Good day from rainy Lancaster Penna. It is in the low 40's here today.
ms-ronni -- Well johni you are not alone how about that
johni -- Its dry, but dull and cold here in England
johni -- We had trouble logging on today
ms-ronni -- Here hoping we have some new chatters from the carriers
ms-ronni -- What the problem re logging on?
johni -- We hoped to have my cousin with us. She has recently discovered
that she is a carrier.
mikeg -- I didn't read the subject matter for today's discussion - I'll
try to give my sister in Texas a call and see if she can join in.
ms-ronni -- That would be great mikeg
johni -- It said no chat today until your time
butch -- It looks like rain and cloudy conditions over most of the
nation.I'm not a carrier except to be here for my daughters who are both carriers.
ms-ronni -- Its 10:30 Thanks Butch I am sure you can contribute some info
ms-ronni -- More the merrier. We carriers have bunches of concerns
johni -- Are you in a different part of the country. We thought that we
were 8 hours difference?
ms-ronni -- Michigan USA
ponytail -- {welcome ponytail}
ms-ronni -- Hi ponytail where you from?
johni -- Whoops! my mistake. Should have checked.
ponytail -- MI
butch -- Ronni--I guess you are the moderator for todays discussion. Both
of my daughters have been asked to go down to NIH to give muscle biopsys
and other tests. It was to bee nov 18th but Annette said it has been
postponed until a later date.
ponytail -- first timer please bear with me
ms-ronni -- Butch you have KD?
butch -- Ronni--Yes, unfortunately.
ms-ronni -- Why do they want to take muscle test. Have had DNA test? Are
they having symptoms?
ponytail -- {welcome ponytail}
ms-ronni -- ponytail don't be afraid to add your comments. We will bear with ya
ponytail -- sorry got off accidentially
butch -- One of the most horrible thing we who have KD is that our
daughters, most time, are carriers. I hope that the condition can be
stopped so future generations won't have to deal with KD.
ms-ronni -- Of my two daughters one is a carrier. And has children too
young to know if they are to be affected later. Bummer
butch -- Ronni--Not showing any more symptoms than most. NIH is still
doing research and I guess they want more material to test.
johni -- My cousin had the blood test only because other family members
were KDers. She found she is a carrier. She has grown up children, sons,
she is in turmoil over whether she should tell them and if so how.
ponytail -- ihave recently been dianosed with kd and my concerns are what
my furture has in store for me.
ponytail -- my mother progressively had the shakes
ms-ronni -- If its for research and comparison of our symptoms more power
to them.
ponytail -- it was a family joke that she didn't need a spoon to stir her
her coffee, it was shook by the time it got to her mouth
ms-ronni -- Johni have you cousin read my story. I have to tell my adult
girls.Broke my heart. I cried. Said I am sorry. knowing It is not my
fault. Felt guilty
ms-ronni -- My grammer may be out of context but I hope you are able to
get the idea. I truly get excited and my mind runs faster then my fingers
johni -- No I havent read your story, are you on the KD story site. If so
I could download it for her.
ms-ronni -- Yes the story is there
ponytail -- now after the fact we've assume that there was an unlying
reason for it, as my brother was post-mortum diagnosed with kd
joekerley -- {welcome joekerley}
ponytail -- i'm no longer of child bearing age, but i sympathize with
those who have children
ms-ronni -- Any one else know of carriers with the shakes, tremmer in the
ms-ronni -- Hi joekerley where you from?
joekerley -- Greensboro NC
johni -- I didn't think that shaking was a part of KD, are the doctors
certain it was down to being a carrier
renee -- {welcome renee}
butch -- ponytail--no body knows what is in store for us tomorrow. Live
today to the max and let tomorrow bring what it may. We have alot of
friends on the KD chat who will help you thru KD concerns.
johni -- Amen to that Butch you got it right!
ms-ronni -- Join in joekerley. KD or carrier?
joekerley -- Carrier
ms-ronni -- Hi renee welcome join right in
ponytail -- i take the attitude that god never gave me children because he
knew i wouldn't have been able to handle it...
chuck -- {welcome chuck}
johni -- We don't have children which we regretted bitterly for years, but
now we are glad that we don't
ponytail -- well, i have had the shakes for about 15 years, but attributed
it to nerves. but now that i know i am a carrier like mother like daughter
ms-ronni -- Sometimes things are for the best. But we all adapt to our
situations. Any other carriers with symptoms? I have have some cramping
and twitching. Year back It seem a normal thing. But now with KD a lot of
the carriers have had these symptoms to different degrees. Only research
will confirm or deny.
joekerley -- {welcome joekerley}
ms-ronni -- Hi chuck how are you today?
chuck -- Doing pretty good today thanks.
butch -- Don't forget--we are getting closer everyday to a cure for KD. We
must keep the Drs. and researchers challenged to find that cure.
renee -- I'm a carrier, and I sometimes get the most horrible muscle
cramps in my legs, mostly during the night or when I over-exert myself.
ponytail -- i am now on a anti tremor drug. granted i also have diabetes
but can tell the difference when it caused by my sugar
ms-ronni -- renee are you in mid 30's?
renee -- i'm in my late 20's - 28 to be exact.
ponytail -- when i went to the genetics dept an was interview by the
neurologist, it reminded me that my mother used to get cramps in her legs
really bad.
ms-ronni -- I recall most of my symptoms accured during late 20's and 30's
I am now 60 and only once in a great while i have a cramp or even the
ponytail -- i have gotten cramps too at night and been awoke by them
chuck -- We only had one child, a daughter and she is a confirmed (by NIH)
carrier but thankfully showing no symptoms at all. She is 45 years old.
johni -- I wonder what percentage of carriers actually suffer symptoms
renee -- Yes- they wake me up right out of a dead sleep. I have several
aunts who are carriers, and they get leg cramps also.
ms-ronni -- Chuck Does she have children? And do you know if your repeat
numbers are the same?
chuck -- No, we do not know if repeats are same. The sad part is yes, she
has two daughters. They have not been tested and we are planning to deal
with that soon. They are 17 and 19 so we must start dealing and explaining
more of KD to them. Not a pleasant task.
ms-ronni -- My daughter was having a lot of twitching and had numerous
test done. nothing showed up for a reason. and couldn't be tied in to KD.
As long as it didn't get worse of hinder life...let it be
ponytail -- i was hospitalized for the first time in my adult life last
christmas, then again in jan and over mother's day. to make a long story
short 1st time it was not my heart. 2nd time after many other specialist
we were back looking into the heart. also had a heart biopsy. i even saw
the prof at U of M who said 'If it ain't broke don't fix it'
ponytail -- this all has taken it's toll on me emotionally and mentally,
but like does go on.
ms-ronni -- With in our family 4 brother and myself are affected. Where
was the 50% chance of passing KD on to our children? It showed up with my
2 girls. One is and the other is not a carrier. They were both tested.
ponytail -- has any studies been done on carriers?
joekerley -- Correction I have KD. Confirm in in 1994 at age 65
ponytail -- as the hear is also a muscle, can it have similiar muscle
ms-ronni -- I have a niece just hats off to her. she will be
having a baby in May. We do have a better time with our children. They at
least are able get through childhood and young adulthood. Other types of
MD are hard on families who loose children at a young age.
butch -- This is the quietest bunch of ladies I have ever seen. Do you all
have questions or concerns that we can find answers to help you cope with
being a carrier.
ms-ronni -- THank butch. I guess it take long to type then talk
ponytail -- i guess it's a sensative emotionally matter that we need to
composure ourselves
johni -- I am trying to consider what questions my cousin would want to
ask. She is unable to join me today due to a bereavement.
ms-ronni -- Has everyone seen the question of anonymous testing? Could
this be part of the reason carriers hold back because insurance will pick
up on KD an put their child on a high risk rate?>
johni -- What is anonymous testing ronni?
renee -- I've done lots of research on KD, but sometimes it's hard to know
what to say or ask.
chuck -- I suppose there isn't many carriers on here.
ms-ronni -- Sorry to hear that johni. Have you cousin read the transcript
and or email me This email address is being protected from spambots. You need JavaScript enabled to view it.
butch -- I hate having my grandson having a 50/50 chance of contacting KD.
Especially because it comes from me. Also my grandaughter who is only 4
may become a carrier and pass this on to her children. That is very hard
to deal with.
ms-ronni -- Apparently people want to be tested withour linking them to
the KD
renee -- I don't have any kids yet, but I think I would opt for the
anonymous testing.
ms-ronni -- I know of a number of people who paid cash for the test so
insurance would not pick up on it.
johni -- If my cousins children could be tested without their knowledge
they would then not need to know anything unless the blood test showed
them to have KD
ms-ronni -- I know exactly how you feel butch. 2 grand kids (boy & girl)
Its sad but I may never know if they will have a problem. Hope my daughter
and son in law understand how bad I feel.
johni -- My sisters children all got tested without her knowledge, so as
not to worry her unnecessarily. Fortunately they were all clear.
chuck -- NIH claims children cannot be tested until they are 18 years of
age so they can make their own decision.
renee -- I am worried about having children because I know that they have
a 50/50 chance of getting KD or being a carrier. My mother wants me to see
a geneticist to find out what our options are (i.e. pre-implantation
genetic diagnosis, etc.).
butch -- The best I can tell you, to remain anonomyous is to go to NIH to
be tested. They want to test us to find that cure. They keep all reports
on us only to researchers and doctors.
ponytail -- I am a health insurance underwriter and that was one of my
concerns, but at this stage in my life, i don't care. granted i recently
was not given the opportunity to apply for long term care disabiliy, for a
number of reasons.
johni -- I suppose when you see your kids enjoying life totally unaware of
what you know and what it might mean to them it is very hard to deal with
ms-ronni -- That is great johni. And you are right Chuck. Children are not
test so as to grow up to their fullest and not be guided by worried
parents. So they say
ms-ronni -- NIH is what exactly for those who don't know
butch -- National Institute of Health in Bethesda, MD.
chuck -- This too was our understanding Butch. You know back when Charlie
was diagnosed they did put repeats on the DNA. We just got the paperwork
from NIH this week with the results of DNA and number of CAGs. My point is
that the paperwork shows only your name (no SSN) and report is only given
to you unless you state and sign otherwise.
joekerley -- {goodbye joekerley}
ponytail -- i don't know if kd is on a high risk list as it's not that
exposed as others dieseases
ms-ronni -- Thank chuck. info is on the KD websit isn't it?
chuck -- NIH is National Institute of Health and is located in Bethesda,
MD. This is how we met Butch from Lancaster. Dr. Fishbeck is located
there. They phoned for Butch and Charlie to come for muscle biospys.
butch -- Anna Lea--You asked about my CAG repeats. Mine was 47 repeats.
johni -- What are CAG repeats?
ms-ronni -- I am not good at trying to explain about CAG repeats and
wouldn't want to say something wrong. But is part of the Testing that
verifies KD Our website does have more info
ms-ronni -- we are coming down to the wire. 11:30 my time
johni -- Thanks I'll look it up.
butch -- johni--CAG repeats have to do with the DNA tests that they give
for KD. From what I know, the higher the repeats, the quicker or more
severe the onset of KD. Sorry I can't give you a better explanation.
johni -- Thanks butch
chuck -- Oh, Charlie said he is two under you. Could it be the picking up
by the belt????LOL I don't feel qualified in explaining CAGs either. We
needed someone from NIH on here today.
ms-ronni -- I want to take a moment and thank everyone for their input. We
will have another chat soon. I feel this was very good for everyone
ponytail -- weel, time does go by too fast. but it's been interesting and
i think i've got the chat process down. thanks to all for listening to me
chatter. looking forward to the next one. have a thankful and god blessed
holiday now matter how we preceive our lives things could always be worse.
ms-ronni -- Maybe we can get someone in authority for a chat. I'll ask
johni -- Yes. Thanks. Perhaps I can get my cousin along to the next one.
butch -- Not only are you ladies carriers, but, you are also care givers.
We who have KD thank you.
ms-ronni -- Thanks butch
johni -- Hear hear Butch
johni -- Bye everyone thanks for the chat!
johni -- {goodbye johni}
chuck -- Bye for now.
chuck -- {goodbye chuck}
ms-ronni -- I am not sure about time frame but it is close, i guess. do
join us next time buye johni butch ponytail chuck, renee and all
butch -- I hope you all stay healthy and don't forget to join the next
chat. This is where we learn alot of information about KD.
renee -- bye.
renee -- {goodbye renee}
butch -- {goodbye butch}
ms-ronni -- {goodbye ms-ronni}
fuby -- {welcome fuby}