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.

2004 - January 24, Vacations spots for the disabled

Kennedy's Disease Chat Transcript 01-24-2004

Topic: Vacation spots that cater to the disabled

Host: Terry Waite

Chat Participants:

terryww
billeric
butch
michigander
duane
garyu
johni
don48312
mikeg
johnm
jkerley

BEGIN CHAT

teryw -- hi bill
butch -- {welcome butch}
billeric -- Mornin' Terry
teryw -- hows things going
butch -- Good morning Terry and Bill. How are you two doing?
teryw -- hi butch
billeric -- So= so Terry. Judy had a few tests done so she just got our of
the hosital after three days. I feel again and bruised the living day
lights out of my butt. Other than that! Good.
teryw -- Bill, I am glad she is out of the hospital and you arre doing ok.
michigander -- Billeric --- what a coincidence I fell too... eight stiches
by my eye
butch -- Where did you guys fll. Inside or outside?
michigander -- I fell on the cement by my car at work while on break...
legs were weak from standing too long
teryw -- Sorry to hear that Mich, are you ok?
butch -- Bill--where did you fall?
michigander -- I always bounce back pretty well...had a lot of practice as
a kids falling on the ice at our lake in Mich... now I'm in Salt Lake
teryw -- Bill, I missed that, you fell also? Sorry I was a bit
distracted. Are you OK?
butch -- I guess we are just a bunch of DOWN TO EARTH people. LOL We get
down more than most people. But we bounce back.
billeric -- butch, I fell right in the hospital while visiting my wife.
Caught my foot on a chair. Didn't break anything but really bruised the
heck out of my behind. I am sure weakness in the legs is to blame.
johni -- I fell too, just before Christmas. A black eye and strained
shoulder.
butch -- Terry--Did you get the horse you were talking about. That should
be a challenge.
teryw -- yes we did. we can e-mail you a website with pictures
michigander -- {welcome michigander}
billeric -- Mornin' Butch
teryw -- Hi Mich
billeric -- Mornin' Michy
teryw -- phone call, 1 min please
michigander -- Morning all..it's cold here...record 21 days straight never
making it above freezing in SLC
billeric -- Michigander, Are you in Utah yet or have I got you mixeds up
with someone else?
teryw -- OK I am back
butch -- I want to thank all of you who participated in the Lottery ticket
sales. We are getting close to selling all of the tickets. Our Lions club
did a great job!!!! We have the potential to make $3100 for the KDA.
teryw -- WOW butch, that sounds great. Please remember we cannot talk
about fundraising for the KDA in this chat room.
duane -- {welcome duane}
teryw -- Hi Duane.
duane -- hello everyone
butch -- Hi Duane.
johni -- {welcome johni}
teryw -- Hello Johni
johni -- Hi from freezing England. It's been a while!!
teryw -- Todays topic is Places that cater to the disabled traveler.
teryw -- I found a website that has a lot of info for disabled travelers.
It's www.sath.org/
butch -- I never realized that there are so many places that are not user
friendly to physically challenged people.
garyu -- {welcome garyu}
garyu -- Goog morning from Kansas City.
michigander -- For tavelers at great place to visit in Salt Lake is the
Clark Planetarium where I work mornings...we have wheelchair lifts and an
elevator...and will soon have a scooter or powerchair
teryw -- Hi Garyu
johni -- Terry does this web site just cover the U.S. or is it world wide?
butch -- Going stairs without a hand rail is impossible for most of us.
Thanks for the web page, Terry.
teryw -- You mean the KDA website?
johni -- No, I mean the sath one for travellers
don48312 -- {welcome don48312}
teryw -- John. I beleive Sath is for worldwide travel
michigander -- What does SATH stand for??
teryw -- Hello Don
duane -- {welcome duane}
teryw -- Society for accesible travel & hospitality
billeric -- Even a lot of walking is getting to be a problem. Stairs a
real no-no.
teryw -- Many more hotel & travel destinations are now looking heavily at
the market for disabled travelers since they make up about 33% of all
travel
teryw -- So its in their best intrest to cater to that market
johni -- We have had problems in the past, arriving at places which were
NOT as described. We have had to move on because their facilities were not
appropriate
don48312 -- morning all, caught up on reading. terry, so glad 2 hear about
chat room in KDA site. i love mda, but loath this web site
michigander -- Is a symposium in San Diego still a possibility???
teryw -- Yes Mich, we are just in need of some volunteers to help out
before we can make the final decision.
johni -- We are currently planning a trip to Ireland, and are aware that
there are not too many places with disabled facilities. You have to be
very careful
teryw -- Just to let you know. The KDA is setting up its own chat room on
the KDA web site. We will be sending out an e-mail to let you know when it
is done and how to use it.
teryw -- The new chat room will give us greater flexability on scheduling
and growth, also you just have to hit the enter key to send.
don48312 -- and writing from top to bottom i hope?
teryw -- THe MDA has been great in supplying us this site for our chats
but its time tht we get our own I think.
don48312 -- new entries on bottom
teryw -- Johni, you are where again?
johni -- England
butch -- This chat room supplied by the MDA has given me the info to help
deal with SBMA or Kennedy's. It was the only game in town. It allowed us
to share info about Kennedy's. Thanks MDA.
teryw -- John we have a man in the UK that is going to start a KD chapter
for support and work with the KDA.
johnm -- {welcome johnm}
johni -- I would like to hear more about that
teryw -- Johni I just sent you the address
teryw -- Hello Johnm
johni -- Thanks Terry
teryw -- We just received a nice e-mail of another man that was being
diagnosed with ALS but in using the KDA site it gave him the info and his
doctor the direction to test for KD instead. It came back that he has KD
and not ALS. I guess the website is working :)
teryw -- We just received a nice e-mail of another man that was being
diagnosed with ALS but in using the KDA site it gave him the info and his
doctor the direction to test for KD instead. It came back that he has KD
and not ALS. I guess the website is working :)
teryw -- opppps how did that happen?
don48312 -- was that a double dribble, terry?
teryw -- I don't know, once you hit send it clears the box. dont know how
it could send it twice.
michigander -- I wonder if ALS has multiple repeats in the DNA code
similar to KD??
teryw -- We have gotten 7 new KD individuals to join us in the last
month.
johni -- Terry are the new KD members in the US?
don48312 -- there is no dna test for als
teryw -- Mich ALS is diagnosed without a DNA blood test. they go mostly
by symptoms and some other tests to give diagnosis if I am correct.
teryw -- correct don
don48312 -- huntington disease has repeats though!
teryw -- yes
don48312 -- yesterday, mda put on a day long seminar for ald, sma and
kennedy patients in Sarasota, FL
teryw -- I got a nasty spider bite last weekend. My arm had extreme pain
and then went numb and developed a large 3 inch red area on the back of my
shoulder then a huge gooey blister in the center.
teryw -- It still feels real sore and is healing OK.
teryw -- I hope
don48312 -- brown recluse spider, terry?
billeric -- Terry, was that a brown recluse by chance?
teryw -- No DOn the Brown Recluse is not in this area
teryw -- I called the poison center.
teryw -- They say a black widow would have caused muscle cramps and
stomach convulsions
teryw -- I did not have them. Must have been another.
billeric -- That's great Terry. All we need is more muscle cramps.
teryw -- I have had my share of medical issues in the past year I would
say, Hernia, Cracked rib, Kidney Stones and now a spider bite. LOL
johnm -- Boy, Terry I hear about all your problems and I don't have any
problem at all.
teryw -- I did not feel the bite, that evening I was playing dominoes
with some friends at the house and my left arm started hurting & going
numb. I told them that I was worried I was going to have a heart attack.
mikeg -- {welcome mikeg}
mikeg -- Hi everyone - sorry I'm late
teryw -- Hello Mikeg how ya been?
teryw -- Mikeg, You are tardy you have detention afterwards!
mikeg -- I was just catching up... Ok, I'll just have to joun the
Breakfast club... LOL.
don48312 -- i been having problems with getting the shakes lately kn my
hands. thought it was low sugar, but glucose testing rules that out.
billeric -- It's seems that if we can't laugh we would be crying most of
the time. Choice is ours.
butch -- Where has anyone else gone that was physically challenged
friendly? I know Terry said that the cruise he was on was pretty easy.
Anyone else have great places to go and see?
don48312 -- i did a cruise and it was w/c friendly. it was on a newer
(1997) ship
don48312 -- we will be on another cruise next saturday for 1 week in the
western carribean
teryw -- great don, enjoy yourself.
johnm -- We made a trip to Biloxi, Mississippi over thankgiving and found
all Casinos very user friendly. Got around very nicely with my scooter.
don48312 -- on a cruise, i usually stay on the ship when visiting
ports-of-call. most foreign transportation is not h/c friendly
billeric -- don, do you take a scooter or wheelchair with you on the
cruises?
teryw -- don I took my manual wheelchair on our cruise and we took it
into allports and did fine.
teryw -- It was an estern carribean.
don48312 -- i took a scooter, but there were several w/c and those folk
did not seem to have any problems
teryw -- Susanne Pushed me around.
don48312 -- wives r like that terry, pushy
teryw -- hehe
butch -- Just talked to a friend who went on a cruise to the western
carribean and he said they offered a 1 week to the eastern carribean
piggybacked to the first cruise for only $290 each.
johni -- My wife is always pushing me around too. LOL
johnm -- I don't like my manual wheelchair as I feel too dependent on
someone else. Give me my scooter any day.
don48312 -- ditto johnm
don48312 -- on the ship (Veendam - Holland American Lines) there were only
6 h/c cabins, so reserve early.
don48312 -- a h/c cabin is usually a few bars, + a roll in shower.
michigander -- There seems to be a fine line between using my powerchair
too much and getting leg cramps at nite and not using it enough and
getting extra tight calf cramps sleeping at nite
mikeg -- I'm still waiting for the paperwork to cleqat on the horseback
riding therapy. I'll let you know when it's a reality.
teryw -- Mike I am going to start that soon :) her at home. If I could
only get on the horse. thats the problem.
teryw -- here
teryw -- We are going to buy a portable small step ladder with handrails,
like a 3 step. that may work for me.
teryw -- I will find a way
mikeg -- Terry, you'll need to have a ramp built.
mikeg -- e and steps don't work too well.
teryw -- what if we go places. I meed something portable also.
don48312 -- steps is a no-no 4 me also
mikeg -- The handrail may be ok though.
michigander -- I'd say cracked ribs is something I'd like never to
experience again...and a lot less hard to deal with is losing my breath
from time to time, especially in the winter
teryw -- I can still do some steps with rails if I use my arms to pull me
up
johnm -- I don't know if I could do steps or not, it has been soooooo long
since I even tried.
jkerley -- {welcome jkerley}
teryw -- Hi Jkerley
teryw -- Hi Jkerley, do you have KD?
jkerley -- Yes
teryw -- I know you JKerly you registerd with us just recently.
mikeg -- I hate to run but I need to get to the post office before it
closes. Take care... until next time - stay healthy!
mikeg -- {goodbye mikeg}
teryw -- thanks for joing us Jkerley
billeric -- Where do you live, jkerley?
jkerley -- Greensboro, NC or in Highlands ,NC
don48312 -- terry, wonder if we could do the symposium on a cruise
ship?????
teryw -- We had thought about that Don. But the price to bring doctors
would be to high for the KDA.
duane -- that's a great idea
don48312 -- problem would be finding a ship with enuf h/c cabins
jkerley -- a symposium on an east coast ship soun good.
michigander -- jkerley...is your place in Highlands close to Burt Reynolds
place?
jkerley -- I do not think he still has one there---- but yes I never have
seen hit on the streets
teryw -- We would love to do a cruise but it would be more exspensive
overall for the KD individuals and to bring the doctors on the cruise and
the Doctors are a large draw for the conference. But its a good Idea.
jkerley -- Doctors need a vacation also
johnm -- {welcome johnm}
butch -- You all are very quiet this AM. Where have you vacationed that
was user friendly for us with KD?
don48312 -- Orlando is very h/c friendly
don48312 -- especially the Disney parks
don48312 -- also, Las vegas is extremely h/c friendsy
don48312 -- but not h/c friendly in the poker room, lol
teryw -- We personally want to see Disney World, Have been wanting to for
years
butch -- Disney parks would be great but, how do you get out of the seats
on some of the rides? They are not very spacious.
michigander -- All the city buses here in Salt Lake as well as lightrail
is powerchair accessible
don48312 -- Sun City Center is only 1 1/2 hours from Disney terry
billeric -- I can't really add much regarding vacationing. We have been
busy going between Mn. and Az. twice a year so most of our energies have
been used up that way. I have found most hotels and motels have decent h/c
facilities.
don48312 -- and 1/2 hour from Bush Gardens
johnm -- The last time we went to a disney park I couldn't go on a lot of
the rides as I knew I couldn't get out of the seat.
billeric -- johnm , that's one of my biggest problems is getting out of
ordinary or low chairs.
don48312 -- at Epcot (the adult park at disney) , we were able to see most
everything.
johnm -- There are a lot of things that we just have to find alternate
ways of handling.
billeric -- I find a lot of restaurants have chairs that I really struggle
with.
johnm -- Billeric, I would be LOST without my Up-Lift Seat Assist.
don48312 -- i skip booths at restaurents. tables only and chairs without
arms.
jkerley -- What is an UP-Lift Seat Assist?
johnm -- jkerley, the Up-Lift is a cylinder powered seat that goes down
with your weight and gives you a little boost when you get up. You can see
it at up-lift.com on the web.
johnm -- The Up-Lift is portable.
michigander -- What does a Up-Lift seat assist look like?
duane -- gotta go. time for late breakfast. All of you take care of
yourselves. Terry, e-mail me if you have questions about the research info
I sent you.
don48312 -- the Up-Lift did not work for me
billeric -- johnm, is that up lift gadget portable. Carry it in?
johnm -- Up-Lift can be purchased at wowthishelps.com.
don48312 -- when did u send Duane?
duane -- this am in pvt chat. so long butch.
don48312 -- oh, sorry, sent to terry
butch -- So long Duane and Lori. Stay healthy.
duane -- wanted him to peruse and mention to all. Hint...sounds
encouraging !
teryw -- Sorry all, I have to go. Will talk to you soon.
don48312 -- gotta go all, nice chat, cya, bye
butch -- Do most of you deal with diabetes. I was just checked and found
to have type 2 diabetes. Is this Kennedy's related.
duane -- {goodbye duane}
jkerley -- Bye to all Jkerley
teryw -- {goodbye teryw}
butch -- So long Jkerley--Stay warm. Jo9in us again.
billeric -- butch, I wonder? My blood sugar is borderline. I would guess
our lack of excercise has something to do with it.
butch -- Join
johnm -- Looks like all are leaving so I'll say bye also.
butch -- Mine is borderline also but, was told to test regularly to keep
it in check.
johnm -- {goodbye johnm}
michigander -- Butch and all...have to run...doctor has told me KD does
increase your likelyhood of diabetes...but haven't gotten yet...may have
liver problem...its elivated...so long for now
butch -- Must go for now. Stay healthy till next we chat.
butch -- {goodbye butch}
billeric -- Thanks guys. Nice chat. Stay upright. If you don't you hurt. I
know from experiance.
billeric -- {goodbye billeric}

END CHAT