Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"You are not alone in your quest for a treatment and cure!"

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 - January 25, Hobbies

Kennedy's Disease Chat Transcript 01-25-03

Topic: Hobbies

Host: Susanne Waite

Chat Participants:

susannew
teda
dbenson
bsofree
johnm
butch
murf
chuck

BEGIN CHAT

susannew -- {welcome susannew}
butch -- {welcome butch}
susannew -- good morning butch!
susannew -- How have you been?
butch -- Good morning susanne. It is very cold here in Penna. About 17
degrees right now. I'm doing well. Hate the cold though.
susannew -- Yes, we've been hearing about the cold back east. We've been
blue skies and 70's/80's... still waiting for winter to come...
butch -- How is Terry and yourself doing? I guess you are very excited
about your trip at the end of the month.
murf -- {welcome murf}
susannew -- We are doing fine. Terry has a pretty bad hernia that started
2 weeks ago... (He had had one 10 years ago, and had operated, but its
going around the mesh they put in back then.) We've thought to cancel
vacation - but he doesn't want to. He's got a belt and a doctors appt. the
minute we get back from the trip.
susannew -- Other than that, I am excited about the trip, but worried
about him.
murf -- I see Terry's hernia is still bothering him
susannew -- Hi Murray!
murf -- Good morning all
butch -- I spoke with John C. on Thurs. He is dealing with the cold and
snow but, Please send him some warmth and sunshine.
dbenson -- Really no snow to speak of just frigid cold. It was 23 below
zero the other morning and that was not with wind chill.
teda -- {welcome teda}
dbenson -- {welcome dbenson}
susannew -- Ok, wishing warmth to all in the snow!!!
murf -- Susanne - can we talk for a moment about the hotel
susannew -- Murf: Call me after the chat!
murf -- OK
susannew -- good morning Ted and Duane. (or is that Lori?)
dbenson -- It's Lori. Duane has been sick since Thanksgiving and may have
to be hospitalized on Monday if not any better.
susannew -- I'm so sorry to hear that Lori. Is it his liver?
dbenson -- No not this time. He has laryngeal erythema and extreme fatigue
and congestion that he can not express and it keeps getting infected and
down into the lungs. They are not real sure on what to do with him. He has
been sleeping in his lift chair since Thanksgiving because he can not
breathe if he lays down.
butch -- Lori. What is Duanes Problem that he might have to go to the
hospital
dbenson -- The infection in his larynx and lungs. Might have to have IV
antibiotics and fluids for dehydration.
susannew -- Lori, please make sure he gets the care he needs - don't let
him wait to get in.
dbenson -- I know. I keep pushing and pushing but of course people don't
think I know what I am talking about.
chuck -- Lori, Charlie and I send our best to Dwayne. Please keep us
posted.
susannew -- Lori, keep pushing. THat's the only way anything happens.
Respiratory infections and KD are more dangerous than those without KD.
THe respiratory is already weakened by KD. Please let us know if there is
anything we can do to help.
dbenson -- Thanks everybody.
murf -- Lori - send Duane our best
butch -- Hey Lori. Long time no chat. Have you been snowed in?
butch -- Good morning Murry. Hope Karol is still doing great and healing
more each day.
murf -- Morning Butch, Karol is ok and sleeping, not a morning person
susannew -- Tell Karol hello when she finally wakes up!!!
susannew -- Murf: Not a morning person - its 9:33 there isn't it?
susannew -- Terry would never let me sleep in that late - the latest I get
to go is 7:30 a.m.
murf -- Susanne - it's before noon
murf -- She always likes to here from ya'll
johnm -- {welcome johnm}
susannew -- Murf is on the 2003 Conference and Symposium meeting committee
- along with others. Everyone on the commitee should be hearing from John
Coakley shortly - he's been traveling.
susannew -- HI John!
johnm -- Hi Susanne. We are complaining about the cold here in SUNNY
Florida also. It is the coldest winter we have seen for the past 10 years.
butch -- Hey, John M. Rub it in about your weather. I guess it is pretty
cold there also. Cold for you all anyway. 50 degrees?
murf -- Hopuston has dipped below freezing twicw this year, Iknow none of
you want to here that but it's tough for me
bsofree -- {welcome bsofree}
susannew -- Murph: We've posted your personal story to the site.
www.kennedysdisease.org - we just haven't announced it to everyone yet!
susannew -- We've also put up a new page - the KDA Store with Cookbooks
and KDA Coffee Mugs for sale.
murf -- I haven't had time to look yet susanne but will after the chat,
thanks
susannew -- Good morning Paul.
bsofree -- Good morning to you all. I got to get the heat up so I could
type.
susannew -- The topic for today's chat is "New Hobbies with KD". As those
with KD become more limited physically, there is definitely a shift in
expectations and what we can do. Including the wives... So, what new
hobbies have you taken on since KD.
chuck -- {welcome chuck}
susannew -- Johnm: How is the weather in Florida? We'll be heading your
way next Tuesday... ANyone near Fort Lauderdale? Let's get together - just
email us and we can arrange to get together for dinner...
johnm -- Susanne, Florida has been rather cold this winter. Fort
Lauderdale is on the East coast and quite a bit further South. That would
be too far to go for lunch. We are between Tampa and Sarasota.
susannew -- Good morning Anna Lea and Chuck!
murf -- I guess you could say that my computer is my hobby, Karol says
it's an extention of my hands
dbenson -- Butch: How's everybody in your family? Hope all is well.
bsofree -- How about teaching. At least I am trying to get my credentials
together so I could give this hobby a try?
susannew -- Paul: Where are you going for your credentials? Your hobby is
collecting different careers!
bsofree -- I have been asked by the local school several times to teach
Real Estate. So, I am going to give it a try, just couple nights a week.
butch -- Mary Lou and I have done several puzzles. They are challenging
and sure make a cold day more enjoyable. We usually do 1000 piece puzzles.
susannew -- I used to do puzzles with my aunt when I was younger. They are
a lot of fun. Especially the ones with so many pieces and not a lot of
different colors.
murf -- Do you believ you can do puzzles on the internet now?
susannew -- I've not heard that murf - good to know!
butch -- Where on the net do you do puzzles?
murf -- on webshots.com
johnm -- There are 2 places on the net to do puzzles, shockwave.com and
jigzone.com. both are very interesting.
susannew -- What does Duane do for hobbies when he is well?
dbenson -- He really does not have any indoors. When he could he liked to
do things outside but he is not able to do that anymore. I am trying to
get something that he can do indoors. He likes to refinish furniture on an
amateur basis. Duane likes to visit a lot.
chuck -- Charlie too meets some of his old friends almost daily at the
mall for coffee and discussing the world's problems....
susannew -- Visit as in talking? There are chats online. Terry goes to a
yahoo.chat a lot and has made a set of virtual friends he talks with
daily. He doesn't have to type, just has to talk with a microphone if
that's all he wants to do.
dbenson -- Yea he is great at talking as you all know. He goes up to the
local gossip mens group every morning at the local cafe when he is able to
be outside and then he goes all over the countryside. Maybe he should try
to get involved in one of the chats on the computer even though he does
not type the best.
susannew -- He could get a microphone and talk, doesn't have to type!
dbenson -- I don't know anything about the microphone bit. How does it
work?
susannew -- Buy a microphone, and plug it into microphone jack (almost all
sound cards have one) and it should work. If not, you might need to adjust
the microphone or enable it in the control panel. Its as clear as talking
on the phone and FREE!!! If you get stuck, just call Terry. He could help
you. THen you guys could set up chat times in Yahoo for KD'rs and Terry
could go there also.
murf -- Microphones and webcams are cheap and they come with instructions.
chuck -- Thanks much. Charlie is really interested in microphone since his
fingers doesn't work too well.
dbenson -- good. I am really computer and any other thing stupid. I can
just type.
murf -- Karol has such a hard time with a computer too.
dbenson -- Tell her that she and I are much better with our mouths anyway,
can't shut us up.
murf -- Amazing this technology stuff :-)
murf -- Lori - I don't disagree with you LOL
butch -- I know you are not computer oriented but, I know you have a great
memory. Lori wae the only one who could identify everyone at the
conference by name. Amazing!!!
dbenson -- Thanks Butch.
butch -- Hi, Anna Lea. Have you and Charlie been sledding this week? I'm
not serious but, it sure would be great to do so.
susannew -- I like to go to Yahoo.games and play pool, "Graffiti" like
pictionary, card games...
chuck -- Charlie is thinking of learning to use the computer which I think
is great. He is quite a reader....
susannew -- Of course, that is when I find a spare 5 minutes!
johnm -- I guess you could say that I am addicted to my computer. We have
a 2000 member computer club here in Sun City Center and I have become
quite active in the club. Housecalls, Special Interest Groups, and open
labs to give people help.
murf -- johnm - is it a good idea to invest in oranges this year?
susannew -- Alistair has put together a chat online for KD and and a KD
page - we've linked to it from the KDA site under other resources/links
page.
susannew -- Its not a scheduled chat - its for whenever you think to go in
or invite another.
teda -- {welcome teda}
teda -- Computer acting up this AM
johnm -- teda, you need to be in Sun City Center, Florida so I could help
you with your computer.
teda -- Too cold in Sun City. I stay in Northern CA
susannew -- Terry got a gas powered remote control truck (for Christmas
from yours truly) - he really wanted it. Its a 4x4 and he races it around
parks and terrorizes little kids and puppies (j/k about the kids and
puppies part). He likes it a lot and races others who are out with theirs.
(I don't have one... yet and then the heat will be on!!!)
butch -- I know Terry was looking for a place to get a chair carrier for
your vehicle. Tell him to try the Scooter Warehouse.
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
susannew -- It wasn't Terry, but a KD "member" who wrote about it. I'll
post your information in the discussion forum. We've gotten about 7
replies to that email! They are all posted there on the KDA site under
discussion forum under assistive devices.
susannew -- When we get back from vacation, TErry said he'll set up a
Yahoo group and then invite you to come chat. It won't be like this chat
where a transcript is recorded. It would be good for wives and carriers to
have chats on also. THe Yahoo group was set up at the request of a KDA
"member" in the PHillipines. Terry did it about 3 weeks ago, but we
haven't had time to send out invitations.
susannew -- This chat is great because it records the conversation and
that allows us to share it with everyone so information can be captured
and shared.
susannew -- Alistair's (from Australia)chat is on MSN.
teda -- Add a web cam and we can see each other, at least it is possible
when it is one to one
dbenson -- How much does a web cam cost?
susannew -- We could put together a page on the KDA site called the KDA
SOciety Pages - those who want could email us their photographs or mail
and we could scan and put on the site - of course with your permission!
johnm -- There are just SOOOOOOO many gadgets that can be gotten for
computers. My wife calls them toys.
susannew -- Web cams run any where from $19 - but low quality - decent for
$50
murf -- {welcome murf}
susannew -- We would suggest the Intel Web Cam - that's what we have and
it works well.
murf -- Talking about computer problems
susannew -- There is an Internet virus that started last night at 9:30
p.m. that is devestating the Internet and bringing it to a crawl.
Microsoft has rated this virus as critical. It doesn't affect individual
machines, but the Internet itself... maybe that's why the trouble?
murf -- Best Buy had a rebate on webcams and a manufactures rebate last
year in Houston that made the thing free
susannew -- Terry has recently gotten into photography. Its always been
one of my passions, but now he's gotten into the act - and of course, we
compete on who got the best shots!
dbenson -- How does he keep his hands steady enough to do that. Duane
can't hold it steady enough to take a picture.
susannew -- He uses a little tripod and a remote trigger cord (it comes
away from the camera and allows him to snap the picture without camera
shake.)
murf -- Karol is also good at photography
bsofree -- Sorry, I have to go soon. Can anyone help me with the
followings: Vacation & traveling, that should be a good hobby? But, I have
traveled so much in my life, visited so many places, I think my traveling
days are over, except where I have to earn a living.
murf -- I know what you mean - My travelling now is with my van.
susannew -- Paul: You will have to come back and share your experiences
traveling all over the world where is good, where is not for those with
scooters/chairs.
susannew -- There is an "Accessible Vacations" Chat scheduled in the next
few weeks... go to the site and check out the topics scheduled to see
when.
butch -- Paul--I hear what you say about traveling. It is hard going
somewhere and not knowing if you will be able to get to the important
sites because of limited mobility.
murf -- There are alot of places in the world that are not handicap
friendly
bsofree -- I was on the road the past 3 months (Christmas holiday, I was
in Quebec). It is getting more and more difficult, even witht he Freedom I
scooter. Maybe, it would be impossible without it.
susannew -- We are challenged on the cruise - trying to figure out which
islands, beaches, etc. will be easy for Terry and I to get to, which he
can't do - like on St. John, Trunks Bay or Virgin Gorda, he can't hike
down to the water and get back up the hill... so those are out.
chuck -- We find traveling getting harder and harder or at least without
some extra help.
susannew -- But planning to do other things where the manual chair can go
and of course, cab around the islands to see what we can see.
johnm -- Speaking of traveling, we have decided to stay pretty close to
home. We are afraid of falling and ending up in a hospital far from home.
susannew -- It is difficult to travel with the manual chair. We think it
might be more difficult also, so that's why trying to get all the
traveling in we can now.
dbenson -- We don't go anywhere except to KD Conferences. Those are the
only vacations we have had in quite a few years.
susannew -- We were so glad to see you in Baltimore. And definitely hope
to see you all in New Orleans.
murf -- The last year or so I've taken bus tours but the stairs, even a
few, are getting tough
bsofree -- If anyone needs to share experience about living with a broken
toe (not that I wish this on anyone of you), please contact me. I broke my
toe just before Christmas. It was an EXPERIENCE. Maybe, this is what
discouraged me so much recently re: traveling.
susannew -- Don't most buses have a lift?
murf -- Lori - they are the best ones!!
johnm -- If things go well, we are planning on the New Orleans Conference
and spending a few days in Biloxi, MS on the way home.
murf -- Buses in China??
susannew -- I've never been to New Orleans (have almost made it there a
couple times on business/conferences, but just never worked out.) I'm very
excited to finally be getting there!
susannew -- I suppose China might be different. I was thinking the US -
SOrry Murray, forgot you are a world traveler!
bsofree -- Buses in China,yes..bus lift in China, not in my life time.
But, for the 1998 Olympic in Beijing, maybe?
murf -- America and maybe Canada have the best access to us. Europe South
America and Asia are tough
butch -- It is so great to share experiences with other KD'ers. Sometimes
something so simple can make someone elses life a little easier, just
because it wasn't thought of. I know that I have learned alot.
bsofree -- I was in Beijing recently and it is amazing what they are doing
to prepare for the 1998 Olympic. All taxi drivers are now required to
learn some English. Imagine forcing you guys to learn Chinese. How about
KD conference in Beijing in 1998?
murf -- If any of you get to the Great Wall, don't walk around through the
gate to the lift. It's worse than the 15 steps in the front to stand on
the Wall
murf -- I think the Olympics are in 2008
bsofree -- The last time I was in the Great Wall, I had Kentucky Fried
Chicken. What a twist in life???
susannew -- I know one thing for sure, if traveling with the wheelchair in
a country with a foreign language, learn how to say "excuse me"!!! It
worked like a charm in Germany... Enshuldigung bitte! Everyone was so
polite and let us through everytime I needed to maneuver Terry around.
bsofree -- Sorry buddy, it is 2008. I think my broken toe also played
trick in my mind?
dbenson -- I don't think we will ever get out of the United States in our
lifetime.
susannew -- You never know Lori - we just might have a KDA conference
somewhere exotic some day!!!
murf -- I was, at one time, trying to find out how many MacDonalds I could
visit in different countries but I quit in Moscow
dbenson -- Doubt if we could afford that, maybe when the kids are gone.
bsofree -- Actually, there are so many package tour to the Orient that is
really, really cheap. But I don't know how handicap friendly they are to
us?
murf -- Lori- never say never
dbenson -- That's true.
susannew -- We are trying very hard to keep the costs down for the
conference. Its tough right now for us to find hotels in New Orleans where
we want it, with the meeting facilities we need, that have enough rooms
available at the price we want!
murf -- My flight to Beijing was $750 return
butch -- I guess if we are going to have a conference in some place
exotic, It will have to be in Lancaster Penna. LOL!
susannew -- HA HA!!!
murf -- Good one Butch LOL
chuck -- Ron, that is big LOL...Bet you wouldn't get lost either - how
about it??? Now "REAL" exotic - you should consider Martinsburg, WV -
gateway to the Shenandoah Valley!!!!
susannew -- Although, I have to say Ron, I fell in love with the Lancaster
area - even called Terry on my cell when I was there on business 3 years
ago and told him we are moving there.
susannew -- Except, I knew it snows and we couldn't do that - We're both
native Southern Californian's and don't have a clue what to do in the snow
- how to dress, how to drive, how to walk...
bsofree -- Snow is something for the non K.D. This is coming from someone
who lived in Quebec for over 30 years. It is impossible to put on the
mitts, scarfs, the big boots (with my broken toe), coats, button up
(zipper up) the coats, etc. etc. Then, to go to the bath room???
johnm -- bsofree, That going to the bathroom with cold hands really hit
home with me.
murf -- bsofree - I know cold too, Lived in Chabugamu when I was a kid (I
still am but a long time ago)
susannew -- Chabugamu? Where is that?
johnm -- Thank you for asking Susanne. I was wondering also.
murf -- Susanne - a radar instillation in Northern Quebec
murf -- Dad must have been a bad boy
butch -- I know Lori was impressed with the names of some of the
surrounding towns. Right Lori?
dbenson -- Butch: I still can not believe some of those names there.
bsofree -- Right after the Christmas holidays, a friend took a package
tour to Hong Kong, Guangzhou, Shanghai, Beijing and return to L.A. for
around $1,000 including 4 stars hotel, etc. (4 nights)
susannew -- I've definitely heard lots of votes for Las Vegas.
murf -- I guess we owe a trip to the west next year
johnm -- Any conferences that we can attend will have to be with DRIVING
distance of Florida.
susannew -- We will probably continue to wrap the meeting around another
major neurology or research conference whereever they hold there's - that
allows us to invite doctors/researchers to attend, without the cost of
airfare. We are just too small to pay 25+ doctors/researchers airfare in
to our conference.
susannew -- I'm game for West Virginia - never been there yet!!! I bet its
beautiful.
murf -- Thanks for bringing us back to reality Susanne!
susannew -- Sorry - keep dreaming though. We have to have our dreams.
butch -- Have we ever checked to seer if Doctors and researchers might be
willing to absorb some of our costs?
butch -- I mean only costs for them to get to the conference and their
room costs.
susannew -- I haven't asked, but I know its standard protocol when a
non-profit invites doctors/researchers that they pay their lodging, food,
and transportation. Our goal is to get as many as possible together at one
place - not only to share their research progress with us in the audience,
but also to get them in a private room together to discuss in greater
detail (and technical detail) their research and to brainstorm, share and
colloborate to help find a cure or treatment faster!
susannew -- At the Baltimore Conference, I went into the room where the 25
researchers/doctors were and they were sitting in a circle, sharing ideas
and information so quickly and with great intent, that I couldn't interupt
their flow. They were in that room together for 4 hours plus.
bsofree -- Actually, New Orlean is fantastic as a city. I have been there
several times for biz and pleasure. The food is fantastic and I drove
around the Latin Quarters with my scooter. For many years, the annual
Medical Trade Show was in New Orlean.
susannew -- The registration costs for the conference not only pay your
way into the conference and the food/drink and information given, meeting
room, etc., but also helps pay for the doctors/researchers cost to be
there. Usually meeting hosts also have to pay speakers - but we were able
to get all our speakers to speak to us on a volunteer basis and had no
transportation costs incurred for them to come.
susannew -- Just had to reimburse the doctors/researchers who were not
local (Australia, Canada, West COast US) for their hotel/food.
bsofree -- Sorry have to start up my vroom, vroom machine and visit some
properties in P.V. for my sister in law. You all have a good day and enjoy
your hobbies. With mine and as susanne said, it is my career. Actually, I
have to work inorder then earn enough to enjoy a hobby.
butch -- I still think that at a conference with all us KD'ers together,
the doctors should try to set up muscle biopsy and other samples for
research. With us all in one area it would give them quite a large no of
samples to work from.
murf -- Butch - I'm for that
dbenson -- Me too.
susannew -- That would be a good idea - I don't know if there is any
reason why they could not do muscle biopsies, etc. there. Murray/Coakley,
please put this on the list of possible things at this years conference.
susannew -- Although it might be difficult to bring equipment, have a
sanitary place to do so, then to ship the biopsies on ice wherever they
need to go, and insurance may not allow them to practice outside their
office or state.
susannew -- But, you never know!
dbenson -- Doesn't hurt to check.
murf -- Will do We'll do some checking
susannew -- I think when the time comes for clinical trials - its good for
the researchers/doctors to know about the KDA "members".
butch -- I just thought that with such a large data base it would be great
to utilize us when they can.
susannew -- 15 minutes to go...
dbenson -- Well, gotta go until next time. Hope everybody stays well and
healthy.
dbenson -- {goodbye dbenson}
murf -- Take care Lori
susannew -- I have a volunteer with a background in social work helping to
do the questionnaires. They have been spread and are now being checked for
accuracy (in the spreads) and then tallied. SOrry this project has been
taking so long, just too many priorities...
murf -- No appologies neccessary, it's a big task
butch -- So long Lori. Take care of Dwane. Stay healthy.
susannew -- Bye Lori. Duane, please take care and get better.
susannew -- Everyone should definitely consider getting their flu shots if
you haven't already. Its very important for those with KD.
johnm -- Speaking of staying healthy, I have been very fortunate. I am
getting over the first cold that I have had in past 10 years.
chuck -- Must run. Thanks again Susanne for ALL you do.
chuck -- {goodbye chuck}
susannew -- I have also been sending out emails to various universities'
neurology departments regarding the grant available. And the next big
project will be the Mailer to neurologists.
susannew -- Again, if you'd like to get involved or volunteer - please let
us know.
butch -- Once again it has been great chatting with you all. Hope everyone
stays healthy. Till next chat. Good bye for now.
murf -- Bye Chuck
susannew -- Just so you also know, Terry and I will be gone until the
10th, starting this next TUesday, so if you email or mail us, you'll know
why no response.
murf -- Bye Butch
butch -- {goodbye butch}
johnm -- Susanne, I don't know how you find time to work and still do all
the things that you have been doing for KDers.
susannew -- I don't know either John - I just keep going! There's so much
to do. I wish I could do the KDA fulltime, we could do so much more so
much faster!
susannew -- Yes, please keep healthy and safe. Bruce will be hosting the
next chat on the 1st of February.
murf -- Susanne - have a good time
murf -- Has anyone heard from Patrick?
susannew -- Thanks Murray! I'm looking forward to turning my brain off. I
told Terry I just want to "be". I'm always doing, and I forget we are
human "beings". Take care!
susannew -- Yes, Patrick just emailed us yesterday. He is coming to the
conference.
murf -- Good
susannew -- Well, its that time! Talk to you all later! Chat will shut
down on its own soon.
murf -- Got to go, I'll e-mail you in a little bit Susanne, Thanks for
everything!
johnm -- Good by all until next time.
susannew -- Murray - call me!!!
murf -- {goodbye murf}
johnm -- {goodbye johnm}
susannew -- Have a wonderful day!
susannew -- {goodbye susannew}

END CHAT