Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Every day parents-to-be wonder whether their child will be 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 20, Exercise, What do you do?

Kennedy's Disease Chat Transcript 09-20-2003

Topic: Exercise, What do you think?

Host: Murray Williams

Chat Participants:

terryw
murf
yves434
johnm
duane
chuck
bruce
don48312
butch

BEGIN CHAT

murf -- Hi all
murf -- All my friends have arrived I see. LOL
butch -- {welcome butch}
murf -- Morning butch
yves434 -- {welcome yves434}
murf -- Morning Yves
yves434 -- Hello
murf -- How is the weather in France?
yves434 -- The weather is very hot
murf -- Yves - the weather should cool off soon.
yves434 -- In August 15.000 people die whith exceptional Summer time
murf -- Yves - we heard, to was teribble!
butch -- ey Murf--congrats on running the show today. Hope Karol is doing
well. How are you? Good morning Yves.
murf -- Karol is still sleeping. I'm doing ok a little sore from over
exerting the other day.
yves434 -- I am from France...so my english is not good
bruce -- {welcome bruce}
bruce -- Good Morning, World
murf -- Hi Bruce
bruce -- I have a few minutes before everyone arrives for the birthday
party, so I thought I might check in.
murf -- Thanks Bruce, how is everything going today? Birthdays are fun
bruce -- Great! Thanks. It is Cindy's mother's 70th. The entire family is
coming in for the day. It should be a blast.
butch -- I didn't know if I would be on line today or not. The hurricane
took our electric. We were without power for 36 hours. Just got electricty
again about 4:30 this morning. Congrats to Bruce for becoming a new board
member. You'll do well.
bruce -- Thanks, Butch. I need a lot of support because the rest of the
board are pros.
murf -- Bruce Your perfic! LOL
murf -- I saw the flooding this morning very bad but could have been worse
bruce -- Butch, we talked to our neighbors in PA and they said they were
lucky, except for some good rain and winds, the damage was light. How
about Lancaster County?
murf -- I guess every one on the east coast is getting paddling exersise
butch -- Alot tree damage from the winds. Some flooding in low lying
areas. We lost electric. Not too bad thru such a violent storm.
murf -- butch - when do you think electricity will be restored?
butch -- We were back on about 4:30 this AM.
bruce -- The last two weeks weather is a major reason why we moved south.
It has been fantastic with highs in the low 80's and no humidity and lows
in the high 50's. The windows are open 24 hours a day.
chuck -- The store was suppose to come right over us in WV but veered west
and we really lucked out. We didn't even have very high winds.
chuck -- Sorry, storm - not store...
murf -- We missed it here in Houston to but caught Allison a few years ago
so I know what your going through.
duane -- {welcome duane}
murf -- Hi duane
duane -- Hello
chuck -- {welcome chuck}
murf -- Hi chuck
duane -- This is my first KD chat session.
murf -- duane you're doing great. where are you from?
bruce -- Welcome Duane - we all had our 'first chat' at one time or
another. If you can put up with all of us for an hour, you are a good man.
yves434 -- {welcome yves434}
butch -- Hey Bruce--Don't rub it in.
duane -- lol
yves434 -- Welcome again...my compyter is very hot too...nee fresh beer
bruce -- Yves, I thought the French only drank wine?
murf -- Yves - pass it around! LOL
murf -- Yves - Frence wine should be good this year!!
murf -- French wine
yves434 -- Very good..and Strong
yves434 -- Murf, I waiting you to test it...and all of you
butch -- How is Duane doing?
duane -- not bad. Beautiful weather here in DFW
butch -- Anna Lea--How are you? How is Chuck doing?
chuck -- Duane, we were wondering about you the other day. We are doing
fine Butch. Are you going to Coakley's party tonight?
butch -- Yes--Are you?
chuck -- We will be there. I will stop the chit-chat and let Murf get on
with business.
butch -- Great--See you there.
duane -- Got my Bi-pap 1 week ago. Really takes some getting used to.
Usually after 5 hours, I turn it off and sleep another 2.
bruce -- Where you having trouble sleeping Duane?
duane -- Yes. But I didn't know it. diaphram has affected by breathing.
More so when lying down. Also, restless legs...
butch -- What is a Bi-pap?
murf -- duane - it took me a month or so to get used to it but it's worth
it. I don't fall asleep during meetings anymore. LOL
bruce -- My brother uses a Bi-Pap and it helps him alot. I remember about
6-8 months ago we had a chat on bi-pap.
murf -- What does anyone do for exersise? Thanks chuck, talk is good too
johnm -- {welcome johnm}
don48312 -- {welcome don48312}
duane -- I also want to know what exercises have been helpful. I get
exhausted very easy
bruce -- Since I have to go soon, I thought that I would mention that I
still exercise about 2-3 hours a day and love it. My MDA doctor from Emory
University really things I am doing great. He asked for copies of my
exercise routine to take to the Physical THerapist at Emory. They want to
incorporate some of the routines into their programs.
murf -- Morning Johnm & don
butch -- Hey Murf--I guess we exercise our jaws more than the rest of our
bodies.
chuck -- I have contined on the excercises therapist gave me after the
time I fell and cracked pelvis. That seems to be about all I can handle.
These are mostly leg excercises.
murf -- bruce could you send us what your doing I'm not exersising at all.
butch -- Hi Don and Johnm.
murf -- Butch LOL that me!!
duane -- I get my exercise just going to the grocery store. Load and
unload vehicle. Whew! Never thought something so simple would become so
difficult.
bruce -- I would be happy to. I have two different routines that I perform
- one every other day. I'll send it to you or who else?
bruce -- I've got to go. Company is arriving. Take care and stay healthy
and be happy. Talk to you soon.
bruce -- {goodbye bruce}
murf -- I would like a copy. I have to say that there is no medical
evidence on whether exersise is good or bad for us.
don48312 -- morning all. for exercise, i walk in a wading pool every day
for 1 - 2 hours. pool is only 3 1/2 to 4 1/2 feet deep and swimming is not
allowed in it. it is heated to 90 degrees, so feels good on joints.
butch -- My Lions club is working on a project to raise monies for the
KDA. I'll tell you about it at the convention.
murf -- Bye Bruce thanks for stopping in, Have a ggod day
duane -- I had been doing PT last Oct - Dec, seemed like it made things
worse for me legs. I now use a cane to get around.
murf -- good day
yves434 -- Bruce, yyou righ...my therapist told me too the same thinh and
my doctor too, only the motorone is tired...but ous muscle has to bo
training a bit
duane -- Is anyone else having problems like this?
murf -- duane this happened to me 4 years ago and my doctor told me to
stop this exersise.
murf -- as don said water ios the best for us but no evidence medically of
it. it's just easier on our legs.
murf -- Maybe I need finger exersises today, the keys keep moving
butch -- Lori--Is that you or is it Duane? I sent several e-mails to you
but they were returned.
don48312 -- water is definately easier on legs. water helps carry weight
duane -- Everything I've read about KD says to stay active. Doctor asked
me last week if I was ready for a walker or scooter. I think I am. Getting
too hard to get around at work.
murf -- I have heard that building a swimming pool is tax deductable for
us??
butch -- Murf--I doubt it, but if you find out differently let me know.
murf -- butch - in Chicago 3 years ago we heard that it was but this maybe
just a state thing.
johnm -- I only do a little light exercises in the morning. My theory is
that the more you exercise your muscles just never return to their
starting strength. My neurologist keeps trying to get me to exercise more
but I'm resisting.
butch -- Any exercise you do without overdoing it is GOOD.
murf -- duane - the problem with us is that the muscles never reguvinate
after exersise.
murf -- duane - I got my first wheelchair last November. I is much better
to get around at work. It's juist the pride thing that hurts now.
johnm -- Murf, I've pretty much gotten over the "Pride Thing". I just do
whatever is necessary for me to keep active.
murf -- johnm Mostly I have to but I'm still in the oil industry and used
to be able to go to locations but sometime it still bothers me
yves434 -- What about the weather time....last month it was very hot in
france...and I was feeling very much better
murf -- Yves - I feel better in the warmth to thats why I moved to Texas.
butch -- Forus KD'ers heat ia a good thing. I hate to think of winter.
don48312 -- i moved to FL for warmth
duane -- yepper. That's what I told him. Also have appt Monday (UTSW
Dallas). Last dr said if he were me he would want to be on Rilutek. Anyone
taking this med?
yves434 -- I take Rilutek too....
duane -- Yves, has this helped?
johnm -- Duane, I've seen conflicting reports on Rilutek. I've heard it
doesn't do any good. I'm only on 300 mg Neuronton per day.
yves434 -- I take Rilutek since 3 years...2 by day...It sems to be good
too
butch -- Duane--I take 1 naproxen and 2 tylenol. Tylenol in the am
naproxen later in the day.
don48312 -- dont take rilutek. take Neurontin
murf -- I take vitimins and try to looose weight LOL
don48312 -- take neurontim 300 mg 3 x a day
murf -- What are these drugs designed to do?
duane -- Supposed to help with tremors and restless legs. I'm not
convinced yet.
johnm -- They just haven't come up with anything the is PROVEN to work and
do us any good. Our progression is just too slow to be able to really tell
if anything really works.
murf -- That's the trouble john we don't know what works. Hopfully we can
find out soon.
butch -- I tried Neurontin. It didn't do much for me.
johnm -- Butch, I really don't see where the Neurontin is doing me any
good either.
don48312 -- neurontin keeps my throat dry
don48312 -- and makes me sleep like a baby
duane -- Only taking Mirapex .50 mg at night and .25 in the morning.
yves434 -- Hello don48...do you have report about rilutek...and send me if
you have
don48312 -- yves, i dont take rilutek
yves434 -- to YMa2507128
butch -- I don't like to take meds and I only take as needed. I'm hoping
not to build up a resistance to the things that help me.
chuck -- I took Neurontin for a while and Dr. at Hopkins seemed to think
it was worthless so I stopped. For excercise - the therapist insisted that
we KDer's should never OVERDO.
duane -- I agree. I no longer do my own yardwork. Just walking on the
uneven ground is proving to be a challenge
johnm -- Chuck, I agree with your doctor and I try not to dfo too much.
don48312 -- if i get tired walking in the walking pool, i just stop
murf -- I have a guy that comes every week to cut grass and weed the
flowers, cheap. so my exersise is to watch him and exersise my right
elbow. LOL
don48312 -- lol murf
duane -- LOL.
johnm -- Walking in a pool seems to be a great way to exercise but I am
too afraid of falling when I get out with tired legs.
murf -- john - my fear as well. I had a hot tub a few years ago and had a
problem walking for two days. There are not good for my legs.
butch -- Johnm--don't be afraid to walk in the pool. Your legs don't get
near as tired as walking on the ground.
yves434 -- When i have took to much exercice during thhe day....I have a
lot of tickles in the body...I can sleep during the night
duane -- Dr's recommending exercise, but the side effects could be worse
than not exercising.
murf -- don - I've found a few websites that offer a pool lift. I plan on
bringing that info to the conference this year
butch -- Do what is right for YOU. Even the doctors don't know for sure.
If it hurts you----DON'T DO IT.
yves434 -- Butch...you right
murf -- That is the best advice butch, thanks
duane -- thanks butch
johnm -- Exercising is another one of those individual things that we each
have to make up our own minds about.
duane -- My legs always feel like noodles when I finish. Maybe aqua
therapy IS best. Just wished the pool was tax deduct.
butch -- Even if you don't get a tax deduction, the benefits will make it
a good investment. Your worth it.
murf -- I'm going to chech on this tax deduction thing today
johnm -- Butch, I feel that anything we invest in to make life easier is
WELL worth it. We just got a new mattress and box spring that is higher
than our old one and it makes it a lot easier to get up from the bed.
murf -- I have one to john and love it
butch -- Good thing John. If it helps-- do it. We must do what helps us.
we are all different with the same problem.
don48312 -- some YMCA'S have walking pools
don48312 -- i use a handicapped chair lift to get out of pool.
murf -- don - how do you feel afterwards. is it hard to walk or drive when
you get out?
don48312 -- i started walking for 15 minutes and built up to 2 hours. weel
just fine afterwards, but rest for 1/2 hour or so after
butch -- I have an above ground pool. It is 53 inches deep. I walk-run for
30 minutes. I always feel better and stronger when done.
butch -- Hey Anna Lea--Don't bring any rain to Coakley's party this year.
chuck -- I don't plan to. It is a beautiful day here today. Pete is also
coming. Is Mary Lou - I hope so. Looking forward to it.
butch -- Anna Lea. Mary Lou will be there. I'll have to leave right after
the chat if I want to be there by tonight. LOL
chuck -- Oh, I doubt you have any trouble Butch. I have a lot of faith in
you.
duane -- Does anyone use the elastic exercise bands? Do they help?
don48312 -- duane, i tried elastic bands a while ago, but didnt like em
johnm -- Duane, My elastic exercise bands are in my desk drawer and when I
open the drawer I think to myself that I should really start using them.
duane -- Johnm. Sounds like my exercise routine.
murf -- has anyone tried the Tai Chi type of exersise?
duane -- What is Tai Chi
butch -- Tai Chi seems like such a great stretching exercise and is low
impact. Just haven't taken time to devote to it.
murf -- duane - every thing you have said today reminds me of myself. I
know what your going through
terryw -- {welcome terryw}
terryw -- Hi all
murf -- Hi terry
yves434 -- Hello, I have too go now...I prepare the " European conference
on rare disorders " and the Kennedy disease is also wellknow there. If
something new...I tell you... Have a good day...all of you
terryw -- sorry for getting here late we have house guests and were out
very late at a Karaoke Competition.
murf -- terry did you win??
terryw -- I love to sing Karaoke, Keeps my voice & lungs in good shape I
find.
terryw -- Heeps my vocal cords in good shape also I have found.
johnm -- Terry, did you win anything at the Competition?
terryw -- I did not sing in the competition, I am not into that I just
sing for fun.
duane -- The only singing I'm allowed to do is in the shower. LOL
butch -- TerIf you didn't get thrown out--You were a winner.
butch -- Sorry--Should be Terry.
murf -- LOL I would not sound good singing through my nose.
johnm -- Murf, I have the same problem
terryw -- I do Harry Chapin "cats in the cradle & his other song Taxi"
pretty good I am told. I also do Fire & rain by James taylor, also
chantilly lace & big John & many others.
butch -- Terrys singing is the reason he had to move????
duane -- my laughing muscles are getting a workout this morning. Hi Terry.
terryw -- LOL
murf -- Bye Yves good luck today
don48312 -- bye yves
don48312 -- hi terry
butch -- So long Yves--Stay healthy.
terryw -- Hi Duane, long time no see.
terryw -- Well folks, update on my weight, I have lost 26 lbs in the past
3 months and my so called manboobs are gone :)
don48312 -- ive lost 30 lbs since March using weight watchers online
terryw -- Good job on the weight loss Don.
terryw -- fixing things around the house here
murf -- terry you can't aford to loose weight your blow away LOL
terryw -- Seems like my muscles burn fat way faster now to keep the
muscles energized.
butch -- What is your weight now. Are you trying to lose the weight? Do
you feel good being lighter?
terryw -- Yes Murray, I am 5 foot 11 and now down to 143, at the last
conference I was 170
don48312 -- good 4 u terry
murf -- WOW I won't tell you what I weigh. Too much still.
butch -- Murf--Have you tried Coakleys Sacred Heart Soup?
terryw -- not trying to lose weight its just happening for some reason. I
am drinking tons of water though along with a lot of walking around the
property.
duane -- I think weight loss would help me. My pants get smaller everytime
I take them to the cleaners. Was 172 now 186.
johnm -- Duane, I'm in about the same boat. I haven't been able to lose
anything.
johnm -- I just try to cut down and eat healthy. My trouble is that I LIKE
to eat.
murf -- me too and all the wrong things LOL
terryw -- with the weight loss I have found that my muscle strenght has
gone way down, It's most likely to the overuse of the muscles. So I am not
sure that lots of muscle activity helps. We will see if they come back
stronger.
terryw -- I would say that of all my hands have taken the worst of the
load, I cant use them to well right now lifting things and holding things
is real bad. I hope that my hand muscles come back.
terryw -- they were fine 3 months ago.
terryw -- its the hand painting that did them in
terryw -- I find it hard to hold a pencil & write now.
terryw -- these muscles in my hans better come back.
murf -- Terry how long has it been that way?
terryw -- about 2 months
johnm -- Terry, my hands work pretty good when it is warm but they don't
work at all when they get cold.
terryw -- same here johnm. I have problems in the frozen food isle in the
supermarket. By the time I get to the checkstand I cannot sign my check
sometimes if I visit the frozen food isle last. I now go there first.
terryw -- they have it so cold there. wonder why LOL, FROZEN FOODS Duh
butch -- I'm retired now but when I was at work, I used to do alot of
writing. I think that typing and writing helped my hand mscles.
terryw -- but if I rest them and do nothing the strength does come back
slowly and then I end up doing more and it goes back to being bad.
murf -- I guess you have to rest more
johnm -- Terry, looks like you may have a problem knowing when to quit.
terryw -- Yes Johnm, I dont listen to my own advice
butch -- YEP!!
butch -- Knowing wen to quit is one thing. Not trying is worse than not
being able to do it.
terryw -- We like to feel useful so we sometimes do things we should not.
murf -- Dr. Atkins works good when you stay on it but thats the problem.
duane -- So, exercise tolerence is defined by individual.
chuck -- Must leave everyone. Enjoyed. Take care one and all.
chuck -- {goodbye chuck}
murf -- Bye Chuck have a good day
butch -- So long Chuck and Anna Lea. Stay healthy.
johnm -- Since John C isn't here I thought I'd hit you with one of the
worst jokes ever. Hang on. Guy goes into a bar and sits down and orders a
drink. Other than the bartender, there's no one else in the place. All of
a sudden he hears a voice that says, "Nice suit." He looks around and
doesn't see anyone and the bartender looks busy washing some glasses. A
little while later the same voice says, "Nice Tie." The guy looks around
again and doesn't see anyone. He finally asks the bartender if he just
said something. "No," replied the bartender, "it wasn't me. It was
probably the peanuts though. They're complimentary."
don48312 -- u r wright, bad joke, lol
murf -- LOL good one john
murf -- john-c has competition
butch -- LOL-- Sure Duane.
murf -- {welcome murf}
murf -- what happened? LOL
don48312 -- gotta go gang. have a good 1, cya in 2 weeks, bye
murf -- the joke must have made my computer LOL
butch -- We have the right to kick you off whenever you tell a bad joke.
Be very careful Murf.
murf -- LOL
duane -- Gotta go. Lawn folks are here...got chores for them. Thanks for
the information everyone. Chat again soon.
terryw -- Great Joke Johnm, I have heard that one before and I like it.
terryw -- bye duane
duane -- {goodbye duane}
butch -- Solong Don. Be safe. Stay healthy.
murf -- Bye duane
butch -- So long Duane. Till next chat.
murf -- I hear that one!!
butch -- Can't understand it--I always type the words perfect and they
still come up on the screen--MISPELLED. LOL
murf -- butch - the keys are moving on you computer too?
butch -- See what I mean--Wen should be when.
terryw -- Self worth
murf -- Always!
murf -- I used to be a pretty good handiman around to house, now I hire
people.
johnm -- Murf, I was the same way and really miss being able to do these
things around the house. My wife isn't too good at following my
suggestions either.
terryw -- Don, thanks for your last letter with the nice suprise in it :)
butch -- Well guys--I guess it is time to go. Stay healthy till next we
chat. So long for now.
terryw -- I must go also, House guests are waking up.
butch -- {goodbye butch}
murf -- bye butch and terry see you next time, take care
murf -- john LOL you know Karol??!!
terryw -- {goodbye terryw}
murf -- just us old die hards left john?
johnm -- Looks like they're all bailing on us.
murf -- I guess I better go too. Have a good weekend and we'll talk to you
next chat. It's almost 10:45 here we'll get kicked off soon.
johnm -- We're about to be cut off anyway so I'll say bye also. Talk to
you next time.
johnm -- {goodbye johnm}
murf -- bye john
murf -- {goodbye murf}

END CHAT