Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Every few days a baby boy is born with this DNA defect"

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 - September 06, Staying Active

Kennedy's Disease Chat Transcript 09-06-2003

Topic: What are you doing to keep active?

Host: Terry Waite

Chat Participants:

terryw
murf
teda
johnm
johni
fergi
bruce

BEGIN CHAT

bruce -- Good Morning!
bruce -- The weather is beautiful down here this morning. It is about 62
with a nice cool breeze. I understand you guys had some rain again.
butch -- Good morning Bruce. How are you doing? We are still getting ALOT
of rain in our area.
bruce -- I have got to leave early today. We have a family get-together to
celebrate my niece's 13th birthday. It should be fun.
butch -- Are you doing OK? Last chat you said you were in a slide as far
as your battle with Kennedy's.
bruce -- Yes, Butch, after about three weeks of pain and weakness, I
bounced back and I feel great again. I went to see my MDA specialist this
week (quarterly check-up) and he said this plateauing and crashing is just
part of the routine. Thanks for asking.
bruce -- In fact, this morning's exercise (100 minutes) was one of my best
routines in some time.
teda -- {welcome teda}
bruce -- My sister-in-law received her black-belt last night in karate. It
was an impressive demonstration. Oh to be young and have some strength...
bruce -- Hello, Teda
teda -- Hi bruce and butch
murf -- {welcome murf}
bruce -- Good Morning, Murf
murf -- good morning all!
butch -- Today's topic...what do you do to stay busy...I just do the
things I can do and before you know it---the day has gone.
terryw -- {welcome terryw}
terryw -- Hello all
bruce -- Good Morning, Terry
murf -- Morning Terry
butch -- Hi Murf--Hi Ted--How are you guys making out?
terryw -- How is everything going?
teda -- Good morning Terry
murf -- Morning butch & bruce
teda -- Things are going pretty good for me
bruce -- Life couldn't be better, thanks!
teda -- Bruce, what do you do for your 100 minute exercise program?
bruce -- I alternate between days - one day I practice Meridian Qigong.
The next day I perform a resistance training routine that I developed to
maintain strength and flexibility. It really helps me mentally and
physically.
terryw -- been busy here, will it evr stop?
murf -- My foots not hurting so that is good
terryw -- Speaking of being active, I have lost 16 lbs in 2 months from
all this activity.
terryw -- I am glad the foot is not hurting murf.
bruce -- 16#'s - WOW - I gained three doing the same thing. Something is
wrong here!
murf -- That is a lot of weight for a guy that didn't really needed to
lose like some of the reast of us.
murf -- How did you do it?
terryw -- I will tell you as most of you may already know. If you want to
stay active just buy a used house, move and have to do thousands in small
repairs to get it in shape. That will keep you active. LOL
butch -- Congrats Terry--Losing 16 lbs is a good thing. Staying busy is a
good thing--being TOO busy is a bad thing.
teda -- I been swimming/exercising/ playing 1 to 2 hours per dayfor the
past 3 months. Helps a some with strength but mostly I do not feel the
pains in my body while in the water.
bruce -- That is great, Teda. Keep it up. As long as you feel good
afterwards...
terryw -- I have lost my muscle, now my fat. What's left? my mind? hehe
murf -- That's all we got terry, hope that never goes
terryw -- 6 foot and 145 is not much weight. the last time you saw me at
last years conference I was 168 lbs.
murf -- Terry - I would love to be 168!
terryw -- whatever fat I had is gone, I am just a heap of non-functioning
muscle now. hehe.
murf -- I how some repare work to do today so maybe I'll lose some too
johni -- {welcome johni}
terryw -- ted, I love the water. It makes me fell nornmal again when I am
in it.
teda -- I feel great afterwards. Yes it does make me feel normal. I wish
there was a way to stay in 24/7.
johni -- I told my wife that we should flood the house and I could move
around a lot easier. She did not seem keen!
murf -- funny thing about wives LOL
terryw -- lol john
murf -- teda - how do you get out?
teda -- The steps and hand rail and slowly one step at a time
terryw -- hi johni
bruce -- Good Morning, Johni
murf -- weclome johni
johni -- Hi everyone, from damp England
terryw -- Johni, send some of that damp this way. Been very very hot for 2
months straight.
butch -- Hi Johni--What is the latest on your condition?
johni -- Thanks Butch. I am having a lot of trouble with my neck, now. Its
hard to hold my head up. I am having to wear a support collar more often.
terryw -- I know what you are feeling johni. I went through that 2 months
ago but luckly I recovered from it.
terryw -- Johni, do you do a lot of looking down with your head in the
down position?
murf -- Fingers not working very good today
johni -- yes, I do, reading, eating, using the computer. I wear my collar
all the time I spend on the computer
murf -- I woke up with a very stiff neck last week but after 3 days it's
better
butch -- Always do your neck exercises...That is to neel down and look up
and give thanks you can do the things you are able to do.
terryw -- good idea butch.
butch -- Did anyone watch the MDA telethon? Can't understand why Kennedys
is not discussed. Sure seems like a great way to educate folks about
Kennedy's.
terryw -- I would think so butch but not sure why they did not talk about
it. I guess that is why we are here. www.kennedysdisease.org
terryw -- The MDA is great for that stuff.
teda -- I was at the local station answering phones and donations. Even
got some TV time sitting there taking calls
teda -- Terry, I got a loaner ECV (Electric Convience Vehicle) from MDA
loaner closet on 8/8 and the had a ramp to loan me also! It is a 3 wheel
scooter and has let me go places I could not go before such as Great
America Amusement Park
terryw -- that is great ted. I am glad you are getting around now.
johni -- I get out and about as much as I can. I support Liverpool
Football Team, and will miss some chats when they clash with a match
bruce -- Terry, as I mentioned, I have to leave now for a birthday party.
Ref. your subject for today, I am taking my second on-line creative
writing couse. These college-type courses are great. It stimulates those
few remaining brain cells and you interact with a bunch of others (ages
low 20's to 80's). It is a blast. I am also involved in some light
woodworking - mostly small projects and some bird-house building. There is
a couple of other things that help fill my day, but I do have to run. Take
care everyone - be safe and healthy.
terryw -- Johni, just stay clear of those Hooligans.
bruce -- {goodbye bruce}
terryw -- talk with you later bruce. have fun.
murf -- Bye Bruce
butch -- So long Bruce--Stay healthy till next we chat.
johni -- I am suurounded by people in wheelchairs - they can be a lively
lot!
johni -- surrounded
murf -- LOL we can be
murf -- It's finnally cooled off enought here to do some outside work
terryw -- I have not yet gone fishing since I got the boat. there has
really been no time. Plus I need to find someone to go with me.
murf -- I'll go!!
terryw -- OK Murf, if you are ever over this way we will go for sure.
murf -- Done!
johni -- Janet and I recently met up with a fellow KDer and his wife. It
was good. He is the first KD sufferer I have met!!
terryw -- Johni, how was it meeting another?
johni -- Great. We had a good talk about all sorts of things. But it was
really great to talk to someone who UNDERSTOOD KD
butch -- Glad to hear that the conference is coming together. Thanks Murf,
Terry, and Coakley for all your hard work bring this together.
terryw -- dont forget Susanne butch
murf -- It's been stressfull but it will be worth it
terryw -- Everyone responds to our e-mails to me when Susanne is the one
doing most all of the work from our office.
terryw -- so I changed our e-mail name to be Terry & Susanne so not to
confuse people. It used to be just Terry.
butch -- Didn't forget her. Couldn't forget our leader. Her stregnths keep
the KDA going.
murf -- I agree butch
johnm -- {welcome johnm}
murf -- Hi johnm
johni -- Hi Johnm
terryw -- Hi Johnm
murf -- Did john-c say he was going to join us today?
murf -- I miss his jokes
terryw -- John said he would be in later.
butch -- I sometime wonder how Jerry Lewis can do what he does for MDA and
fighting with his own health problems. What a great man.
terryw -- I saw a special report on him the other night about the pain he
had for years that no one kknew about and how a electronic nerve
stimulator surgically installed in him solved his pain. He says he was on
the verge of suicide when the doctors showed him the device.
terryw -- the pain was from all the comedy fall's hed did for the movies
terryw -- his pain is now better but he is has a battle with that other
disease.
murf -- ooch he must have been in great pain!
teda -- When the I was at the MDA Telethon station they had guests on that
they interviewed. Mostly they covered childrens diseases and ALS. Guess
those stories get more donations then KD.
butch -- We all know about falls--Of course ours are not to make other
laugh. Ours are just another way of connecting with mOTHER EARTH.
terryw -- he said that he had a gun to his head when he called his doctor
and the doctor convinced Jerry to hold off 30 minutes until he could come
over and show him a new device. It saved his life.
terryw -- Just goes to show you that a cure or treatment could be right
around the corner any day.
murf -- We need to get KDA in the limelight more teda
johnm -- Terry, it's hard to believe that Jerry could have been thinking
of doing that. But then I guess we just don't know what the stress can do
to a person.
murf -- We need to get the next grant out. maybe we are just around the
corner!
teda -- I agree, I told everyone at the station that I talked to the I was
one of Jerry's Kids and that I had KD and many wanted to know more about
it because they had never heard of it. And these are people working at the
Telethon!!
butch -- We with Kennedy's are not looking for sympathy--but a way to
educate others about the disease, and possibly keep others from being
misdiagnosed.
johnm -- Butch, it seems like all/most of us were diagnosed with ALS. I
contributed to ALSA for a lot of years before I knew I had KD.
terryw -- I think we all know what living with pain or a disease can do to
a person we just don't like to open up and talk about it sometimes because
others may think we are weak. I admit that at times I wished I was dead.
But that passes and I snap myself out of it.
murf -- I know what you mean Terry!
johni -- I am waiting for an architect to visit our home to advise on how
to achieve a better bathroom for my use.
murf -- johni - how many people do we have in England?
johni -- No way of knowing. We know of two distant cousins of mine, and a
chap in Cumbria.
fergi -- {welcome fergi}
murf -- johni - good to see you can talk to someone sort of local
johni -- Not really local. My cousins do not want to talk, and we
travelled to Cumbria to see Hilary. But it was so good to talk that we are
going to keep meeting.
murf -- great news johni, it helps to talk to someone on a regular basis
butch -- Sometimes sharing a problem with KD with another KD'er is all
that is needed. It doesn't solve the problem--but, it sure helps to know
you are not alone with the problem.
butch -- Hi Fergi--Long time--no see. How have you been?
murf -- hi fergi
fergi -- hi all from Madrid
terryw -- hi Fergi,
murf -- How's the weather in Spain?
johnm -- Hi Fergi
fergi -- I just arrive from two month in the Mediterranean coast
fergi -- The summer it was very hot. Temperatures over 40ºC
johnm -- Fergi, that was even hotter than her in Florida.
butch -- If you need anyone to go along as a companion for a 2 month jaunt
in the mediteranean---Give me a call.
fergi -- This year i am able to take several bath in the sea, due a
special wheelchair with float
murf -- we are advancing wheelchair technology! LOL
johnm -- Fergi, isn't it amazing what they come up with to make life
easier for the physically impaired?
johni -- That sounds great fergi, I just need some warm water and a
wheelchair with float!!
fergi -- Yes, in near every European countries it was a terrorific hot. In
Sevilla the higher temperature registered over 48ºC.
murf -- I heard about the heat in Europe, very bad thing!
johni -- I am afraid that those sort of temperatures would see me off!
murf -- 100% butch!
fergi -- johni, the Mediterranean sea in Alicante the water temperatures
are higher than 22ºC this summer
butch -- I saw pictures of Italy where rivers and reservoirsa have dried
up because of the heat. Terrible situation.
terryw -- <----reaches for his conversion ruler LOL
murf -- warmth is better than cold for us but there is a limit.
johni -- Ditto Terry ...and murf
johnm -- Fergi, every time you give us one od "C" I have to take a peek at
my thermometer.
johnm -- one of those
murf -- I think that is about 70 deg F. Warm water!!
fergi -- Thera are in some beaches a special service for handicapped
people that help you with two monitors to have a bath in the sea. beaches
with no big waves
johni -- What a wonderful service that is fergi, other countries should
take note.
butch -- Hope you understood--reservoirsa is Italian for reservoir--LOL.
terryw -- by monitors you mean assistants to help you in & out of the
water?
terryw -- The only way lifeguards help us out of the water here in the USA
is if we fake drowning.
murf -- I like that one terry! LOL
fergi -- Yes, Terry... and they go with you into the sea to maintein the
wheelchar allways against the waves. With your back
butch -- I think they have monitors here in the US. They will help us into
the surf--they just won't let us back on dry land..LOL--What a wonderful
service this must be to anyone who is wheelchair bound.
johni -- I am able to use a hydrotherapy pool, which is great, but it has
become too difficult getting dressed etc afterwards, that I have stopped
going. It just wiped me out!
johnm -- We have been right at about 32 C all summer. The A/C bill has
been pretty high.
murf -- We just coolded off to that temp. It's great!!
murf -- my A/C bill is killing me LOL
murf -- Karol likes to keep the house almost to cold for me
terryw -- I get the same Murf here. Susanne like it colder than me.
johnm -- We all like heat more than cold but then turn down the A/C in
summer when it gets toooooo warm.
johni -- Janet is always dressed for summer in our house, especially in
the winter, because I have to have it so warm.
johnm -- That may not be all bad johni if "summer" is like I picture it.
LOL
fergi -- For us (KD patients) the comfortable temperature must be in water
not less than 20º Centigrades, i do not know the convertion to Farenheit
murf -- johni - is that like a hot tub? my legs don't work so good after I
get out, or try to get out! LOL
johni -- Murf a hydrotherapy pool is a very warm swimming pool, usually
with a hoist to lift you in and out. I can walk in such a pool!!!
johni -- Our Coastal waters are too cold for any but the hardiest disabled
people
fergi -- I have got a little pool in my home (9 x 4 mt.),but in Madrid the
water is colder
murf -- johni - Cool! I need one of those! LOL
murf -- I've been thinking of building a pool but the $35,000 is hard to
find.
teda -- It would be nice to have full access to a warm pool year round
with all the ramps and lifts. Salt water would also be better than all of
chemicals.
johni -- Yes teda, that would be great
murf -- fergi - how is Spain for handicapped people?
johnm -- Teda, here in Sun City Center we have those pools but I don't use
them. I'm too afraid of losing what muscle I still have remaining.
terryw -- johnm, smimming is good to keep the muscle you do have limber.
butch -- I guess we here in the USA are lucky to have so many KD'ers to
chat with. I'm sure in Europe there are more who have the disease but are
not diagnosed with KD. I guess that is why Terry and Susanne are so
important to us. They shared knowledge with us when we had no clue or a
place to sseek information. THANKS!!!!!
terryw -- you are welcome butch.
murf -- here here butch!!
fergi -- butch, i agree with you, here in Spain i only know two more KD,s
but there must be a t least 40 that do not known his correct diagnosis
johni -- One of these special driers that you just sit in front and get
blown dry, with no energy sapping effort.
fergi -- My pool was built a year ago and costs was near ?15,000 , fiber
glass, naturally
teda -- Time to sign off, till next time take care all.
terryw -- bye ted
johni -- Bye Teda
teda -- {goodbye teda}
butch -- So long Ted. Stay healthy.
murf -- bye teda take care!
butch -- OK Coakley--It is about time you show up to share the joke of the
day...Where are you?
fergi -- bye to all. See you in 15 days
johni -- If the next chat is two weeks today I will be cheering on my
team. So take care all, and I will talk to you next time! Bye
murf -- bye furgi take care!
johni -- {goodbye johni}
terryw -- bye fergi, johni
butch -- So long Fergi--Hlad you joined us today.
murf -- bye johni take care of yourself!
butch -- Hlad--Glad
johnm -- Terry, I really glad that the turnout for NOLA is as good as it
is. It should be a very GOOD meeting.
terryw -- wish you could come johnm?
johnm -- Yes, Terry, I'm sorry we won't be able to make it also.
murf -- It always is!!
murf -- next year johnm
terryw -- Would like to meet you someday John. Thanks again for keeping up
with the reformatting of the chat trascripts and getting them to the KDA.
It helps us a lot.
terryw -- Yes, I guess a lot of people wait until the last minute to
confirm but we had to get a count to cover the KDA expense wise. I am glad
that so many replied they are coming.
fergi -- To all, my addres in MSN fergi This e-mail address is being protected from spambots. You need JavaScript enabled to view it
butch -- Terry--Did Dr. Kennedy respond to your invitation?
terryw -- Yes butch, Dr. Kennedy will not be in attendance sorry to say.
terryw -- we are gong to stay the weekend to sight see after the meeting.
murf -- Good! We were thinking about the same thing!
murf -- Maybe we could go fishing! LOL
butch -- It was a great chat today. Staying busy does not seem to be a
problem for any of us. Especially when it tkes all day to do what we used
to do in a couple hours.LOL--
terryw -- I have never been there. It will be interesting.
murf -- I'll have to sign off...got some things to do before 11am. see
ya'll in two weeks.
murf -- {goodbye murf}
terryw -- me also murf, goodbye all.
johnm -- Terry, let me know the next time you get to FLorida and have a
little free time.
terryw -- ok john.
terryw -- {goodbye terryw}
butch -- So long Murf. Say Hi to Karol.
johnm -- Looks like it's winding down again so I'll sign off also. Bye all
johnm -- {goodbye johnm}
butch -- Good bye till next chat. Stay healthy and happy.
butch -- So long Fergi.
butch -- {goodbye butch}

END CHAT