Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I thank God there are so many who will share their story to give others hope!"

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Kennedy's Disease Chat Transcript 06-14-2003

Topic:  Carriers Chat

Host: Susanne Waite


Chat Participants:



susannew -- Good morning Butch!
butch -- Good morning Susanne. I guess by now you are settled in your new
house. How do you like it?
susannew -- Unfortunately, not yet. Next Sunday we move! Our current house
is in disarray and crazy, but we're excited and can't wait to get there. A
bit nervous also!
susannew -- THis is a huge move for me. I've never lived outside Ventura
susannew -- I have VERY DEEP roots here!
butch -- Is it user friendly so Terry has an easier time around the house.
susannew -- Yes, he is very excited to be going to a one-story. I didn't
realize how difficult the 2 story had become - he doesn't complain. But
he's been running around the house saying, "I can't wait til we have no
more stairs!"
susannew -- I know it seems terrible of me to have not noticed, but with
work, the KDA, the house, and all that we do, I overlooked it - not paying
enough attention. I expect Terry to tell me when somethings' a problem,
but he doesn't always. Sometimes, its up to me to notice.
butch -- I'm sure you will "fit in" where ever you go.If things get dull
ask Karol to come to see you. She and Murf will liven things up for you.
susannew -- I'd love to have Karol and Murf and you and others visit
sometime. We'll be 20 minutes from the gates of Yosemite National Park.
It's beautiful country. I call Yosemite God's little slice of heaven here
on Earth!
susannew -- I don't think we'll get bored. We now have projects from here
to eternity - between keeping up with the property, putting in a driveway
someday when we can afford it, the great outdoors right in our backyard
(lakes, Yosemite, etc.), brush clearing, painting... We just need to
figure out new schedules for everything now.
susannew -- How's Mary Lou and Annette and Anita?
butch -- Mary Lou is still dealing with the heart problem. Annette is on
her way to Florida. Anita moved to another house with several acres of
land so she is busy in the yard. Thanks for asking.
johnm -- Butch, do you know where in Florida Annette is going to be?
butch -- John, I think they are going to Miami.
johnm -- Butch, too bad they won't be near Tampa as I'd like to meet them
for lunch while they are here.
susannew -- I'm sorry to hear about Mary Lou. I will continue to pray for
her. I miss working with Annette a lot! Good for Anita - we'll be doing
the same shortly - well, I should say I will. As you know all too well,
Terry can't be out there doing too much, or he'll suffer for it.
butch -- Please don't think that we can't do anything. All we need most
time is some help to complete the task we want to do. Don't worry about
paying for doing. We know our limitations.
butch -- I think it is harder having our wives do for us. I'd rather
suffer a little in my body than suffer alot in my heart.
susannew -- I completely understand that and let Terry do things. But I've
also seen him overdo it too many times and the pain for the next day or
two I hear about. So, I don't stop him, but I'll warn him when I know he's
been on his feet too long, or doing something too long that's taxing. Its
up to him to decide to do it or not (and not complain the next day, cause,
I warned him!!!) I suppose, like most guys, he's determined to see through
something. Sometimes, that means doing too much
susannew -- Thankfully, TErry married a work horse! And I hope my strength
and health continues for a very long time! (He knew what he was doing I
think when he married me - I'm 8 years younger than him!)
susannew -- Today's topic is really for carriers... "When to tell the
children?" - But it looks like its just you and me today. Any tidbits of
wisdom on the topic for others?
johnm -- {welcome johnm}
susannew -- Good morning John - we're way off topic...
susannew -- I was up til midnight last night working on a large
presentation for Monday, so excuse me if I'm a bit loopy. I'm really
tired! And tonite is our moving away party. I'm gonna need a nap!
butch -- Mary Lou and I helped a friend do a sub sale last week. We made
1734 subs in about 13 hours. A very long day. Did I pay for it? A little.
Did I like doing it? A lot.
susannew -- That's wonderful - Was it a fundraiser? There are so many fun
things you can do for fundraisers!
susannew -- I hope it wasn't just the 3 of you making 1,734 subs!
butch -- Good morning John. How is Florida treating you?
johnm -- Florida is treating me just great. I hear what you all are
saaying about doing things. Most of the things I do nowdays are things
that I can do sitting down or on my scooter. I don't want to take the
chance of falling and breaking something more than my foot.
susannew -- Just a quick update, the KDA received 3 grant requests. We
plan to fund the first one July 1, 2003. We'll make an announcement once
we do so.
susannew -- We are also releasing KD tissues to 3 other researchers. We
certainly hope some insight will be gained by this.
susannew -- And, I know - we've talked about the questionnaire and the
mailer so much over the last 2 years. But we have someone local who is
going to devote full-time attention to tallying the questionnaire. We hope
to have results by early September.
susannew -- The mailer will be dropped once we move (need to put the new
P.O. Box on the brochures) and the KDA has just received Non-profit bulk
mail status with the Post office - so we can mail it at a discount.
butch -- Susanne--I am glad that you have some help with the association.
Especially help that is close to your area.
butch -- Susanne--what do you think about carriers telling their sons and
daughters about the potential of getting Kennedys as a carrier or a KD
butch -- I think they should be told BEFORE it is time for them to start
raising a family.
susannew -- Not having children, this is a tough question. I think that if
I did have children, I'd let them know all along, just as if Terry had
diabetes or I had high blood pressure, that it runs in the family. That's
a fact of life that they would grow up with. It doesn't necessarily mean
they will have it (unless the daughter is an obligatory carrier if the
father has KD). I would think that would make it easier for them to accept
later. I remember being a kid and hearing my mother talk about my
grandmother's thyroid condition, or alzheimers', and understanding that I
might someday face the same conditions.
johnm -- One of my sisters has been tested and determined NOT to be a
carrier. The other has not and her kids don't care to know.
susannew -- But, testing of children, I would not. To definitively get a
child tested can preclude them from future health, disability, long term
care, and other insurance as well as perhaps jobs. If something runs in
your family but you don't show symptoms and never were tested, you can
honestly answer the insurance application that you don't have it. But, if
you get tested, find out you do, then answer the application that you
don't, its misrepresentation or fraud, and your claim would be denied.
Then what would have been the point to pay the insurance premium?
susannew -- I think its good to have in the back of your mind, there's a
possibility your child may have inherited the KD gene. But my thoughts are
that you have to let them be kids and not burden them with it too soon.
But guide and direct them towards a career that won't be physically
demanding so if they did have KD, they would be able to work as long as
butch -- As a KD individual I want my family to know the potential of
getting the disease. I don't want to scare anyone but I want them to be
informed of the consequences of not knowing about KD.
johnm -- I guess I'm with you Susanne. I think for all concerned it is
really better to wait until some kind of symtoms present themselves. I had
not idea what was happening and feel I was better off because of it.
susannew -- I agree with you Butch. Succinctly put!
susannew -- I'm too long winded - sorry!
susannew -- Terry's family had no known history - so when he started to
show signs it was very scary. We had no idea what was going on, and worse
- neither did the doctors!!! It took about 2 years for them to finally
figure it out after two misdiagnosis. Had we known this ran in his family,
I think we would have been a little more prepared to emotionally accept it.
johnm -- Butch, I think they have to be aware but let them live their life
to the fullest.
susannew -- I know for me it would have been easier. It hit us from left
field and it took me a very long time (2 years after the correct
diagnosis) to accept what was happening.
susannew -- We're thankful that with KD, you do get your childhood and
young adulthood to do everything you want to physically. Terry was
thankful he got to snow ski, jet ski, etc. With some diseases, children
never get that chance. In this case, I think it is better to have had and
lost, than never to have had.
johnm -- I guess I never realized how bad off I was with my first
diagnosis of ALS. I just went on living.
susannew -- To receive the ALS diagnosis and go on living was very
admirable of you John. I don't know what would have happened to Terry and
I if it was an ALS diagnosis (I was only 27 at the time). I think I might
have gone over the edge. Thankfully, the 2 misdiagnosis were not fatal.
Too many KD individuals were misdiagnosed with ALS first. Its a very sad
fact. Hopefully, the KD DNA blood test is changing that fact today.
johnm -- I didn't know I had KD until after I went on total disability and
moved to Florida.
johnm -- I'm still trying to do as much as I can for as long as I can.
butch -- I can't believe the attendance of todays chat. I know when I
started looking for info on KD and found your site, i was very happy.
Thank God, you and Terry thought ahead, to share thoughts about Kennedys.
It is alot better to be correctly diagnosed. Thanks again.
susannew -- Thanks Butch. We didn't want anyone to feel like they were in
the dark like us in the beginning. There wasn't a lot of information out
there at the time.
butch -- John--We can only deal with one day at a time. Do as much as you
susannew -- I'm surprised by the low attendance today also. The donations
this year have been extremely low also. We wonder how many individuals
truly find the KDA valuable? I know through some emails we get that in the
beginning, individuals are very happy to find us, but then that seems to
wane. I wonder what more we could do for KD individuals? What would make
the KDA valuable to everyone with KD?
johnm -- I think there are a lot of people out there who just don't like
to participate in chats.
johnm -- Susanne, I agree with Butch about the wonderful job you are both
doing with the Web Site and trying to get the word out about this disease.
It is really a full time job and I commend you both.
butch -- Susanne--Have you made a formal invitation to Dr. Kennedy to
attend the convention in Nov? I don't want him excluded because we didn't
inform him in time.
susannew -- Dr. Kennedy was invited to this years meeting as well as a
multitude of other researchers! In fact, Dr. Kennedy just wrote us back
yesterday regarding a doctor in eastern Canada (the email we sent out was
for a gentleman in New Brunswick who was looking for a doctor because he
believes he has KD.)
susannew -- Dr. Kennedy was invited to this years meeting as well as a
multitude of other researchers! In fact, Dr. Kennedy just wrote us back
yesterday regarding a doctor in eastern Canada (the email we sent out was
for a gentleman in New Brunswick who was looking for a doctor because he
believes he has KD.)
susannew -- Its tough to keep up with the KDA on a daily basis - its been
three years now - Terry and I work on the KDA daily in one sort or
another. Responding to emails, working on projects in the back end,
processing checks, doing financials, filing, juggling all sorts of things
while I work full time, take care of the house and yard and our personal
financials. I have to admit. It gets a bit taxing now and then. Its great
to have help, but its tough when we are all so geographically spread out.
We are the KDA's operational center here in California. I don't want to
sound like I'm complaining, just its getting tough. The board is great
also. John and Murray are doing a great job on the conference planning and
coordination and attend every BOD meeting (which we hold immediately
following the first chat of every month), and they keep up with various
items and projects assigned! Its amazing what it takes to keep things
updated and moving along!
butch -- It is very hard to find a doctor who knows about Kennedys. Most
times we have to educate the doctors. The best thing i would tell the
gentleman from Canada is to go to the NIH, National Institute of Health in
Bethesda, Md.
susannew -- The NIH is a great place to go. Their knowledge is excellent.
A local MDA clinic is also a great place to go.
johnm -- The three of us here in Sun City Center all go to the same Doctor
at the MDA Clinic in Sarasota, Florida.
johnm -- We go to see her once a year but all she can really do is listen.
susannew -- Its good to go once in a while. Terry goes to MDA's clinic at
UCLA and they check his muscle strength etc. But until there is a cure or
treatment, no need to go back frequently.
john-c. -- {welcome john-c.}
johnm -- Hi, one of the other John's.
susannew -- Good morning John.
butch -- I will be applying for social security disibility. I hope I have
all the info needed to make the transition to disibility status. I didn't
want to apply because I can still do some things, but, there are so many
limitations I have to deal with. Any helpful wordsw of wisdom to expedite
the process?
susannew -- Make sure you have full documentation of your progression from
your doctor for Social Security Disability. Also, give them the KDA's web
site address so that they can find out more about the disease and give
them Dr. Fischbeck's information as a reference for questions. This is
what Terry did and he received his Social Security Disability with no
problem or need to appeal.
john-c. -- Butch: the lady who spoke at the convention last year has been
a tremendous help in applying for disability with at least 3 men from the
susannew -- We video taped that Social Security session if anyone is
interested in purchasing a copy on VHS.
johnm -- Butch, it's been 10 years since I applied SS disability and I
guess all I did was fill out the paperwork with my doctors letter and wait
for it to be approved. I was on Total Disability from my company before
john-c. -- Hi all. Better never than late. Looks like a semi-private
conversation. I hope all are well.
butch -- Hi John C--Loved your latest Cokley's corner. Great job.
john-c. -- Thanks for the good words.
john-c. -- John m: how's FL weather and, more importantly, How are you?
johnm -- John, the Florida weather is WARM and beautiful. I'm doing just
great and keeping busy.
john-c. -- Hi Susanne: I bet you're excited!
susannew -- I'm excited. We've got so much packed and ready to go. Our
house looks like a warehouse!
john-c. -- John: I wish you were closer: with your computer expertise you
would be invaluable to me.
johnm -- John, email me at This email address is being protected from spambots. You need JavaScript enabled to view it. and maybe I can give you some
insight into your problems.
john-c. -- John, I'll get with you early next week.
susannew -- I'll have to ask you guys what kind of tractor set up to buy?
We're going to need one for keeping the pasture mowed down for horses,
disking the arena, towing bales of hay, etc!
johnm -- Susanne, just keep Terry from trying to do TOOOOOOO much.
susannew -- I know - he's doing a little at a time and actually pacing
himself quite well. We've been packing for about 4 weeks now. A bit at a
john-c. -- Great experience with John Deere. Excellent product as well as
service from dealer. A little higher in first cost, but worth every penny.
EZ to change attachments.
john-c. -- Thanks, John
susannew -- EZ enough for a girl to change out?
johnm -- I don't have to worry about Tractors. We live a gated community
with an association to take care of ALL the outside work.
butch -- It was great chatting with you all today. I must be going. I am
scheduled to be selling hot dogs and sodas to help pay for lawyers in a
fight against a Wall Mart moving into a mostly housing environment. So
losng till next chat. Stay healthy. Good bye for now.
john-c. -- Butch: I need some of your expertise also in the next week: I
have a printing plant to lopok at and could use an expert's opinion.
susannew -- Take care Butch!
john-c. -- Susanne- EZ enough for a 10 yr. old girl to change. It's a
problem for a 61 yr old guy, but not insurmountable.
butch -- Sure Joun e-mail me and I'll help all I can.
johnm -- See you next time Butch.
butch -- {goodbye butch}
john-c. -- Bye Butch. Best to MaryLou.
john-c. -- John: I wish you could make it to NOLA for the conference.
johnm -- John, it would be nice to see all of you in person but it just
isn't in cards this time.
john-c. -- Understood, regrettably.
johnm -- in the cards at
john-c. -- New Granddaughter this Tuesday - a Miracel girl!!
john-c. -- Miracle!
susannew -- Congratulations!
susannew -- Can she change the tractor parts out ?
johnm -- Have as much fun with her as you can, John.
john-c. -- She was full term, and diagnosed with a bad heart valve (
john-c. -- Nine (9) Drs in the delivery room.
john-c. -- Ped Heart surgeon, etc, etc
john-c. -- Best words I ever heard were "She's pink".
susannew -- Wow - I didn't realize. Definitely a blessing to have her.
john-c. -- She's in the garage now working on the mower
john-c. -- Sarah, my youngest daughter (Mom) is a labor & delivery nurse &
knew more than most about it.
susannew -- : )
john-c. -- Hopkins specialists were happily astounded when Regan was born
susannew -- Ten more minutes of chat!
john-c. -- this is a really HAPPY time.
susannew -- I think we should start making our announcements on the Web
site at rather than through email - what do you
susannew -- Or, perhaps just save our announcements and just do one a
month? Like an electronic newsletter? (Unless time is of the essence?)
john-c. -- Good idea. This was a good chat topic & I thought there would
be a crowd today.
johnm -- Susanne, that is probably a good idea in ADDITION to the email.
Do we get many hits on the web site?
susannew -- I'd like to drive traffic to the site, rather than us
constantly emailing out. If anyone wants updates, they could just go to
the site. Just a thought. WE can discuss more at the board meeting soon.
susannew -- Yes, it is a good chat topic, but unfortunately, we didn't
have any carriers to get their thoughts! We did have some thoughts from
individuals with symptoms.
john-c. -- John, do you have children? Have they told their kids about KD?
& have the grandkids been tested? .. mine have not & don't plan on it.
johnm -- Our daughter was adopted so we haven't been faced with those
john-c. -- How grand of you to have adopted!
john-c. -- They don't want the kids to be "labelled" possibly. And then
there is the Insurance ?? about pre-existing, etc, etc.
susannew -- Almost chat end time.
john-c. -- OK- Enjoy life!!
johnm -- Too bad we couldn't have had a better turn out for the chat.
Maybe the next one will be better.
john-c. -- I'll get with each of you at a later time. Thanks for the
conversation today.
susannew -- OK, Bye everyone
john-c. -- Bye
john-c. -- {goodbye john-c.}
johnm -- Bye ALL!
johnm -- {goodbye johnm}
susannew -- {goodbye susannew}