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."

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript 04-05-2003

Topic:  Carrier Support/Concerns

Host: Ms-Ronni


Chat Participants:



butch -- {welcome butch}
ms-ronni -- {welcome ms-ronni}
chuck -- {welcome chuck}
johnm -- {welcome johnm}
don48312 -- {welcome don48312}
billeric -- {welcome billeric}

ms-ronni -- Hi butch sorry to not be earlier. Hope we have more to join us
ms-ronni -- Hi chuck
butch -- Good morning Ronni, Anna Lea. how are you all?
chuck -- Fine thanks. How about you and your family??
ms-ronni -- Weather here in MI is icy, rainy, yuck. What happen to spring?
don48312 -- ronni, where in MI. Was in sterling hts be4 fl
ms-ronni -- don- Redford twp between detroit and livonia
don48312 -- know it well ronni
don48312 -- fl is sunny & 80's
don48312 -- yup, beautiful Sun City Center, FL. 3 KD'ers here
don48312 -- lots of WV retirees here in SCC
ms-ronni -- Welcom anna lea
johnm -- {welcome johnm}
butch -- It has been slowstarting but grows as the morning goes on.
butch -- Good day johnm. How is your weather in England? It is rainy and
cold here in Penna.
johnm -- Butch, johnm is from Florida with Don and not from Englend.
butch -- Johnm--Sorry--Wrong john. I think that is Johni.
ms-ronni -- Where you from Anna lea?
chuck -- Ronni, I talk for husband, Charles. We are in Martinsburg, WV.
don48312 -- {welcome don48312}
ms-ronni -- Has everyone informed carriers in your family of our chat
butch -- Hi Don. Hope you are leading thoes Marines in Baghdad.
don48312 -- wish i wuz young enuf to be in Baghdad
don48312 -- attended a pro troop rally on friday
ms-ronni -- Sure wish we weren't faced with the war. Support our troops
and pray for their safe return
don48312 -- i support our persident
billeric -- {welcome billeric}
billeric -- Mornin' guys from sunny Phoenix
don48312 -- morning johnm
johnm -- Mornin Don.
johnm -- Check out this web site. We got a kick out of it.
butch -- To all you ladies who might be carriers, what is your greatest
ms-ronni -- Welcome all. Feel free to comment, input, and ask any question
about symptoms of Carriers
butch -- Also as a carrier, do you show symptoms of KD?
ms-ronni -- My daughter was frightened she may end up in a wheel chair and
unable to care for her children. She was reassured that was not the case.
but she does have the occassional twitching and cramping as myself at her
age (mid 30's) I think age is important to know in these cases as my
symptoms have died down through the years I am 61
johnm -- One of my sisters has been tested and has found out that she is
not a carrier.
ms-ronni -- johnm, guess that shows the 50% chance of offspring getting KD
Any other females to be concerned about?
johnm -- I have another sister that hasn't been tested and a brother that
doesn't want to know at this time.
butch -- I think most of the guys who have KD aren't aware of how severe
the symptoms that some of the ladies have. Do they include ladies in the
research at NIH? And to what extent.
chuck -- Has anyone's daughters been tested (DNA) to know for sure that
they are carriers??? Has Anita or Annette, Butch.
butch -- Yes, Ansita and Annette are both carriers. We were all tested at
NIH. But what I don't know is there any research testing being done?
butch -- That should be Anita not Ansita. Brain and fingers arent
ms-ronni -- I haven't heard of carrir studies. Could have missed that
info. But maybe once KD is mastered by researchers than carriers may have
some way to determine if the symptoms are KD or not.
ms-ronni -- Isn't is auto that a daughter will be a carrier if father has
ms-ronni -- Carrier research is a good thing to look into. Will post
anything I find on the matter
chuck -- Ronnie, we took our daughter to NIH, however, she has two
daughters. They won't test children until they reach 18. Ours two
granddaughters have both just reached 18 and so far our daughter has not
decided to go back. Hopefully in time.
ms-ronni -- There has been question about dizzines with carriers. Any
other thought of symptom with twitching, cramping?
johnm -- I think they are concerned about insurance coverage if they know
the diagnoses for sure.
chuck -- So far, we have not detected any syptoms showing in our daughter.
butch -- I also have a cousin who I think has KD. He doesn't want to be
tested or even know if he has KD. I think it is important because of his
daughters and son.
ms-ronni -- I have a neice with a boy and girl. the girl has been told of
the possibilities of KD but it will be up to her to pursue the testing per
her mother.
ms-ronni -- Chuck how old is your daughter
chuck -- Oh my, this really makes me feel OLD!!! (Her age and the
graddaughters - ha) Our daughter will be 46 in Aug.
ms-ronni -- If these offspring are of age it would be good if they were
aware of KD and leave it up to them re testing. Especially when thinking
of starting a family.
chuck -- I agree, however, as parents you can only advise - correct???
ms-ronni -- After finding out about KD and my one daughter (tested and
carrier) started having the twitching in her 30's I recalled my time late
20's and 30's being bothered with symptoms as we call them and now relate
them to KD. My opinion only.
johnm -- ronni, same with me, looking back I now see the symptoms that
appeared a long time before I was diagnosed.
chuck -- Charlie is now 75, however, the earliest we can looked back for
related symptoms would be between 1983-1985 - after he retired.
ms-ronni -- We can only advise is right. When my daughter found out she
was a carrier and had 2 children already I was pushing to have them
tested. Worry wort that I am. But for my reasons of helping them with a
different way of life to plan for the future the doctors said no testing
on youngsters. And they are right. Let them grow on their own without
being guided.
chuck -- We are relying on Dr. Fishbeck coming up with the "CURE" before
our grand children getting into trouble. We are certainly praying for him.
chuck -- Dr. Fishbeck and Dr. Kennedy together certainly are an excellant
ms-ronni -- Having 4 brothersI look back at their teens. Yes there were
signs then. The enlarged breasts, shaking. So if i am around I will be
watching my grandson silently
ms-ronni -- At least by time 20 yrs or so goes by a treatment or cure will
be found. I pray anyway it will
ms-ronni -- When did the feet start changing for you guys. May I ask. Just
butch -- Ronni--What do you mean about the feet changing? Also do any of
you guys go to a chiropractor on a regular basis? I had health insurance
thru work, so I didn't have to tell them of any existing conditions.
ms-ronni -- My brothers feet changed. I'm not sure just when. Teens or
adult. Seems they became a little more larger in size and broad
billeric -- I never expieranced the feet change. Weakness in the legs is
what alerted me.
johnm -- The only changes to my feet seems to be a high arch and curling
ms-ronni -- Thanks for the input on the feet. I don't recall the fellas
mentioning it. My brother was told this was one of the signs, as large
breast etc
butch -- I still find it amazing that looking back, I thought some of the
problems I was having might of been normal aging. At the time, I didn't
equate it with any disease.
chuck -- You know, should the granddaughters be tested (or anyone when
they become 18) and find they are carriers - this can affect their lives
in many ways i.e. careers (employment) and health insurance to mention
butch -- Everyone keeps saying about health and life insurance. I didn't
have any problems with health insurance because of KD. As far as life
insurance I had already purchased that long before I was diagnosed.
ms-ronni -- Another niece recently married and due to have a baby in May
considered having the fetus tested. But besides the cost the chance is 50%
of passing on KD and the child can still have a good life for 30 40 yrs or
so. Let nature take its course she said
chuck -- Butch, did you know you had KD at the time you applied for health
ms-ronni -- One brother got disability ins before he was verified to have
KD. He often said if it was is last dollar he would not let the policy
lapse. He was in med ins.
billeric -- Butch, I expect getting long term health insurance in the
future will be impossible if you are diagnosed with KD.
butch -- Bill--Can an insurance co. refuse your application because of KD?
I don't see where we are more prone to use hospitals or doctors than any
other segment of society.
johnm -- I probably use my health insurance less that some of the people
down here that don't have KD.
butch -- Johnm--exactly--Don't know why they would deny us coverage.
billeric -- Butch, I am a retiree of the Fed. Govt. There long term
insurance is not available to those with a neurological disease.
ms-ronni -- When changing companies and obtaining new health ins. the pre
exiting question comes up. A friend of mine went through this and because
she had a minor heart valve problem that was not being treated she was
denied coverage. Just an example what ins can do.

butch -- Bill--didn't know that. Very interesting--Still with all the Fed
Govt does for us why they would deny a neurological problem. Would they
cover a heart condition or diabetes?
billeric -- Butch, the Feds. contracted out the long term insurance. The
companies pretty much decided who they would cover and who they won't.
Statistics i"m sure.
ms-ronni -- Are there any other symptom of carriers not mentioned so far?
Has carriers had trouble with ins.
billeric -- Butch, My wife has Lupus so and they won't cover that also.
chuck -- I agree Butch. It seems we are being discriminated. Now someone
has also mentioned Lupus - how about AIDS?????
ms-ronni -- Our time 10 minutes give or take one or two.
butch -- I think alot of people don't let an insurance co know about a
suspedted problem without definite diagnosis. That is why they look for a
testing site that is secure and doesn't give out information on results of
that testing. Aids???Good question. Sure don't know that either.
ms-ronni -- I've been told by a few people with dibetes etc that they pay
a high risk rate
butch -- Ronni--we should have about 20 minutes--We have till 11:45.
ms-ronni -- I wasn't aware. Sorry about that. Thought it was to 11:30
billeric -- I think privacy is really important for young people who are
being tested. Worth it to pay for themselves and keep the info private.
ms-ronni -- I had MD pay for my testing. But one of my daughters paid out
of pocket per suggestion of dr.
butch -- John Coakley--If you read this, Mary Lou wants to know about the
diet you spoke of two weeks ago. She just got out of the hospital with
congestive heart failure. Needs to get healthy--so looking for your diet
chuck -- On the lighter side----I just made a pot of John Coakley's "FAT
BURNING" soup..... He must be working today. So sorry Butch, why didn't
you let us know? How is she doing??? When did this take place. Please give
her out best...
ms-ronni -- Hope Mary Lou is doing well
butch -- Ronni--Sugest your daughters go to NIH for testing. That way they
are included in the research and are dkept confidential on each
butch -- Anna Lea, This was 2 wks ago. She is doing better. Not perfect,
but better.
ms-ronni -- Maybe we could get some info compiled from carriers and
compare symptoms. Have your carriers contact me if they are interested
This email address is being protected from spambots. You need JavaScript enabled to view it. Maybe I could get a simple form drawn up to make it
easier. What do think about that?
butch -- The best thing about NIH is that you are tested, for your
benefit. Also you may give samples of tissue or muscle, for the doctors
research. So it is a win win situation for us.
chuck -- We agree with all you said about NIH Butch. A really great place
to be connected with.
chuck -- Also, anyone that can get there is welcome....
butch -- Anna Lea, Mary Lou said to save your quarters. We are still
looking forward to the one armed bandits who will try to take our money.
johnm -- Butch, sounds like we should save some time to meet at the casino
in New Orleans. We plan on stopping by Biloxi on our way home if we do get
to NO in November.
chuck -- We must go - enjoyed and may God bless all KDer's and our Country.
butch -- Anna Lea--Do you have John Coakleys's diet recipe? If so please
E-mail it to us. Thanks
johnm -- Where can I get more information about NIH?
ms-ronni -- THe info in on our website. Under test centers?
chuck -- {goodbye chuck}
butch -- NIH is located in Bethesda, Maryland. Dr. Fischbeck is the Head
research doctor there. I would recommend that we all get there to help
with the research.
ms-ronni -- My pooch is crossing his legs so I must let him out. Just a
few minutes left. Thanks for all joining our chat today. Take care