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 - May 31, Depression, How to fight it

Kennedy's Disease Chat Transcript 05-31-2003

Topic: Depression, How to fight it

Host: Bruce Gaughran

Chat Participants:

bruce
don48312
butch
johnm
pa-paul
mom-of-bradley

BEGIN CHAT

bruce -- {welcome bruce}
butch -- {welcome butch}
don48312 -- {welcome don48312}
johnm -- {welcome johnm}
pa-paul -- {welcome pa-paul}
mom-of-bradley -- {welcome mom-of-bradley}

bruce -- Welcome, I was beginning to think I had the wrong day or time.
don48312 -- {welcome don48312}
don48312 -- hi guys
bruce -- Welcome, Don
butch -- Good morning Bruce. How is Georgia treating you? Here in soggy
Penna. we have had rain or showers for 28 out of the last 31 days of may.
don48312 -- sunny and in 80's here in fl
don48312 -- very little rain this last month
don48312 -- bruce, where in ga?
bruce -- Don, we are in Rinngold (or about two miles out of town anyway).
don48312 -- what town, lol?
don48312 -- butch, what big city is Rinngold near????
bruce -- Don, Ringgold is 15 minutes south of Chattanooga
bruce -- DOn, we use to live in Lakeland and spend a lot of time at Anna
Marie.
don48312 -- very close bruce
don48312 -- bruce, why in gods name would u move from Lakeland to PA???
bruce -- We also use to sail out of a little harbor area named 'Black'
something - south of Bradenton.
bruce -- Work - and in between that we moved to Seattle.
don48312 -- Bradenton is sooo close
bruce -- We really enjoyed the winters in Florida. Our screened in porch
became my TV rec room to watch the games.
johnm -- Bruce, sounds like you have done a little moving. That gets
tougher as we get older and less mobile.
bruce -- John, this last move was a killer for me. It took me about three
months to recover and I am not certain I didn't lose a little ground.
johnm -- I was still pretty mobile while we were living in Joliet, IL so I
got along pretty good.
don48312 -- u 2 going to the convention?
butch -- Hi Don. Yes I am going to the convention.
bruce -- Don, we do not think we are going this year. We have some other
priorities at the same time to tend to.
bruce -- Life is good. We are really enjoying retirement. How is your
transition going?
butch -- Bruce--I think the best thinbg about retirement is having the day
OFF. Being able to do the things you can. I know this is not nece3ssarily
what we WANT TO DO, BUT THE THINGS WE CAN DO.
bruce -- I agree. I am more busy then ever, but am enjoying having every
day a weekend.
butch -- Bruce--I guess your CHI BALL is getting a workout since you have
more free time now.
bruce -- Where are you located, Don?
don48312 -- mike goynes (atlanta), John Mengel (wisconsin) and I (detroit)
are all here in sun city center, retired, 30 mi s of tampa
johnm -- {welcome johnm}
bruce -- Welcome, John
johnm -- Good Morning All from beautiful, WARM Florida.
butch -- Welcome Johnm.
don48312 -- johnm, where in fl, lol???
bruce -- John and Don, how will Tampa Bay do this year in football?
don48312 -- i think tampa improved in the draft and free agency
butch -- It sure is a great topic for this chat. After all these rainy
days this past month, depression is bound to set in. All we do here in
Penna. is cut grass between showers. See what you guys are missing out on.
Winter we had alot of snow, spring we have alot of rain.
don48312 -- both judy and i did the depression thing every winter in
detroit
don48312 -- best move we ever made to join johnm and mikeg here in fl. we
both just love it here
bruce -- Gentleman,should we wait a few more minutes before starting or
just get going with today's topic?
don48312 -- your call bruce
bruce -- Okay then, why don't we get started. Todays topic: Depression -
anger - frustration - the blues and how do we stay up.
bruce -- A Question: What causes us to feel down at times? (besides the
weather)
johnm -- I guess I'm very fortunate in regards to all of the above. I'm
kept pretty busy with my computer so I don't have time for any of them.
bruce -- John, keeping busy is one of the ways I use to feel good about
life. Betwen my writing, computer, Qigong, reading, woodworking, etc. I
stay busy and out of trouble.
bruce -- A few things that I find get me down are/have been: a) Loss of
freedom (e.g., mobility) b) Loss of capability (e.g., Realizing that you
cannot do something any longer) c) Loss of job (e.g., forced retirement)
d) A serious fall, illness, or injury e) One of those days you are
completely wiped out (no energy or strength)
don48312 -- keeping busy, computer, pool, poker, etc...... keeps me up
don48312 -- i walk most every day in pool for 1 - 2 hours. helps alot
butch -- Don, I also do the pool running- Seems to help the legs. Just
like most times I go in circles and don't get anywhere. Of course it is
better than sitting.
bruce -- Don, that still 'hurts' when I have to ask someone to do
something I use to do and enjoyed doing.
johnm -- I am very mechanical minded and could do any repair around the
house that needed to be done. I really miss being able to do that.
johnm -- I guess that is my biggest frustration. Not being able to do the
thing that I used to be able to do.
bruce -- John, I do not think a week and often a day doesn't go by that I
think of the same thing (What I use to be able to do).
don48312 -- we have a pool in sun city center just for walking. it is very
much used here
johnm -- Bruce, I agree with all of your observations but I think we have
to resign ourselves to our capabilities and accept all the help we need
and use all the aids that are available to keep as active as possible.
bruce -- Some of the things I like to do that help me are: a) Go outside
and enjoy nature, or family and friends. b) Exercise (get those endorphins
pumping) c) Laugh - watch a funny movie (e.g., Young Frankenstein) d) Do
something productive or that you enjoy doing (e.g., work, hobby) e)
Meditate (free the mind)
don48312 -- i get down when wife or someone else has to do the things i
use to do. but i try to just grin and bare it
don48312 -- i agree johnm
bruce -- John, I couldn't agree more. I was pretty stubborn about giving
in to 'helpful aids' until the last couple of years. What a difference
they have made in my lifestyle and energy.
don48312 -- my pride scooter has made life much more normal since i got it
2 years ago.
butch -- One thing you guys should do is join in when the significant
others chats are scheduled. If only to say thanks to thoes we depend on
most.
bruce -- Good idea. Without our spouses - life would be depressing.
johnm -- Boy, AMEN to that spouses observation.
don48312 -- {welcome don48312}
butch -- I don't know exactly what the final benefits will be but I am
going to a chiropractor to keep the muscles loose and stretched out. Seems
to help.
bruce -- Stretching is great for the muscles and joints. I do it every
day. It also helps to prevent injuries.
bruce -- Welcome Don
pa-paul -- {welcome pa-paul}
bruce -- Welcome Paul
pa-paul -- Hi bruce
pa-paul -- sorry Im late a good neighbor stopped by.
bruce -- As all of you know, I am a strong advocate of 'smart' exercising.
It has made my life and my view of life much better. I am happy to hear of
others that exercise.
pa-paul -- where can i learn more about the "smart exercise"
bruce -- Paul, I am refering to my own style of Qigong and yoga that
includes meditation. I think you said you still pratice a little Tai Chi,
is that correct?
pa-paul -- bruce-- no i dont but i do need something.. BAD
don48312 -- we have great neighbors here. everybody here moved here from
someplace else, mostly from north
don48312 -- but i try to concentrate on the future, what i am going to do,
not the past and what i use to do.
johnm -- That's a good way to look at it Don.
bruce -- Great attitude, Don.
don48312 -- we do cruises, daytona 500, las vegas, etc to keep forward
looking
don48312 -- cant change the past, but can change the future
bruce -- I am always so thankful that except for KD, I am a pretty healthy
guy. We have many friends that are not as fortunate in the health issue
area.
johnm -- Bruce, I'm the same way. If I could walk, I'd be in perfect
health.
don48312 -- to prevent from feeling down, i just concentrate of the vasat
number of others that are worse off then KDers
don48312 -- vast
butch -- Paul You live in the Allentown area. Is that correct? I live in
Lancaster,which is near Harrisburg.
pa-paul -- butch Yes we get down to the lancaster area often, with a
camper
bruce -- Paul, if you are interested, check out my website for some ideas
and then send me an email. I can show you what I do every day.
This e-mail address is being protected from spambots. You need JavaScript enabled to view it http://www.geocities.com/bgaughr/
pa-paul -- bruce Thanks
pa-paul -- thanks bruce its This e-mail address is being protected from spambots. You need JavaScript enabled to view it
bruce -- What I love about this KD assocation is the interaction between
the members and the willingness to share ideas/concepts/ what works/what
helps/etc. It is great and very uplifting.
butch -- Going to the convention last year, I found that most KDer's are a
very positive minded individuals. We work well within our limitations. If
and when we don't recogniZe our limitations, we fall or get hurt.
don48312 -- we especially enjoyed the interaction at the Baltimore
conference
bruce -- Well, it sound to me that all of us are pretty darn healthy
emotionally. Each of us has our own style/methodology to over-come the
blues. What else works for you?
butch -- Bruce--we had a convention in Baltimore, you lived in the
north--we are having a convention in New Orleans so you moved to the
south. Where will next years convention take you?
bruce -- Another thing, I would feel a little more isolated without my PC
and it capabilities (email and Internet). I was never a consistent writer
(pen/paper). Email has made a big change in that area.
don48312 -- i agree on puter. cant imagine this disease without my dell
pa-paul -- sorry bruce but i dont seen to have anything that works for me
pa-paul -- just one day at a time
butch -- Paul--Get out and visit any VA hospital. We are soooo Lucky to
only have KD. There are alot of reasons to consider ourselves blessed.
don48312 -- i wish convention was in las vegas
pa-paul -- is vegas near your home don
don48312 -- no, live in fl. vegas second home, lol
bruce -- One thing about Vega is that the air fare and rooms are pretty
reasonable, but the price you pay for entertainment (gaming) could be
XXXX.
don48312 -- true bruce, but have u checked out the prices for this years
convention in new orleans?????
johnm -- I don't go any place any more that I can't drive to and have my
scooter with me for mobility. I don't want to take the chance of falling
while trying to walk.
don48312 -- ditto johnm
bruce -- We could give another aspect of our lives - 'smart living' (only
it took me several years of hard knocks to get there)
bruce -- I meant to say " we could CALL another"
don48312 -- bruce, i think u r on 2 something there,
bruce -- Really, I feel so blessed to be associated with the KDA (and the
work of the Waites). I could not be more fortunate to be able to share and
learn from all of you.
don48312 -- brb
bruce -- Don, what is brb?
don48312 -- be right back
butch -- Hey Don, What is BRB? We need to know.
don48312 -- brb = be right back
bruce -- Thanks, that is a new one to me, Don.
don48312 -- sorry
johnm -- Don, you'll have to start explaining all your little abeviations.
don48312 -- sorry, bad habits are hard to break
johnm -- Don, we don't want to break some bad habits.
don48312 -- lol, johnm
johnm -- I think once we get over the notion that it is not manly to use
"Aids" for doing things we can go on with our lives as best we can. I know
I'd be lost without all my "helpers".
bruce -- What else helps keep us going (getting up each morning, wearing a
smile on our face, etc.)?
bruce -- Camping on John's comment earluer, I have also found that people
in general (and often complete strangers) are very nice and accomodating.
They are willing to help me get a good seat, help me move around, etc. I
was concerned for several years about how people would look at me and
treat me, that is no longer a concern.
don48312 -- i also find the vast majority of people are kind.
pa-paul -- ditto
don48312 -- gives one faith in the human race
johnm -- Bruce, I guess my main concern is that they may think I'm
"Falling Down Drunk" and may not want to help.
bruce -- I remember back in January during the trip south, I couldn't get
up on a curve and fell backwards at a gas station. I saw a gentleman on
the pay phone and asked if he could help get me up. He told the person who
he was talking to that he would be right back. He then walked over and
picked me up like a sack of potatoes. He was great.
don48312 -- if ya got a cane, most people figure out you could use a
little assisstance
johnm -- Don, that cane thing is probably true but I don't do enough
walking anymore to keep the cane with me.
don48312 -- i keep a cane on my scooter to get up when i can
bruce -- I have an attachment I jury-rigged to the scooter that allows my
cane to 'snap' into place behind the seat. In that way I can ride and walk
as needed. It helps. It is also a good weapon (just kidding).
johnm -- Don, I just get close enough to something to hang on to.
don48312 -- i jury rigged a piece of PVC pipe with a cap glued to the
bottom, to the front of my scooter using hose clamps to attach device to
scooter. works fine. wife spray painter and looks good.
butch -- Once again our thanks to Terry who set up this cat site for us to
discuss and learn from each other ways to keep from getting depressed.
Thanks to Terry and you all for sharing.
butch -- Not cat site but CHAT site.
bruce -- Right on
don48312 -- np butch, np = no problem
pa-paul -- thanks everyone till next time
pa-paul -- {goodbye pa-paul}
butch -- One thing we should do is get a better card to carry that
designates us as KDer's.
johnm -- Butch, I guess that is something that we don't think about until
we have a problem and then it is too late.
bruce -- Good idea, Butch. Something more professional that might even
reflect our doctor's name, telephone, etc.
butch -- If we were in an accident we should be able to alert doctors of
our condition. Also to make them aware of any special needs before any
surgery.
bruce -- Sometime, we need to collect all of these ideas (little helps)
and put them into a document for future generations of KD'rs.
butch -- Don, how is your games of chance coming along? Are you making any
money?
don48312 -- the poker gods have been smiling on me this year, but ask me
in august after my july las vegas visit. i'm gonna visit KDer len while
there.
don48312 -- if u ever have surgery, ya better notify the radiologist of
your disease. they do special things to reduce risk of bad things
butch -- I'm not too concerned with scheduled surgery but, if in an
accident and needing emergency surgery. We could be in trouble.
bruce -- Don, these are just the kind of things I am talking about. People
with experience telling others of the "do's and don'ts" on all subjects.
Experience is invaluable.
don48312 -- be4 i was marriewd and in the service, i met a girl in red
whoes who's experience was invaluable
don48312 -- red shoes
bruce -- LOL
don48312 -- butch, even scheduled surgery should be preceeded with a
discusasion of our disease with the radiologist
butch -- See Don, learning from others is a valuable tool.
bruce -- Guys, I hate to do this, but my son is visiting from Minnesota.
We have to go over the mountains to a family get together today. I have to
sign off early. Butch, would you mind closing this chat down in another 15
minutes for me? Thanks for your participation and support. You are all
great! Have a great day and an even better year.
mom-of-bradley -- {welcome mom-of-bradley}
don48312 -- i got 2 go also, nice chatting, bye bye = goodbye
butch -- No problem Bruce. Thanks for hosting today.
don48312 -- butch, if ya ever get down to fl, please feel welcome to drop
by and see john, mike and i in tampa
bruce -- 18 minutes to go before our time is up. Again, take care.
bruce -- {goodbye bruce}
mom-of-bradley -- Hi hope you don't mind but I wanted to visit despite my
son not having kennedy's disease but having duchenne MD
mom-of-bradley -- are you all leaving?
butch -- No we are not all leaving. We have about 10 more minutes to go.
johnm -- Mom, we only have 15 minutes left so there may not be too much
more to talk about unless you may have some questions.
butch -- Mom of Bradley. Welcome and where are you located and are you a
carrier?
mom-of-bradley -- southern Illinois
mom-of-bradley -- Yes I think I am but not determined for sure;
mom-of-bradley -- My mom had some labs last spring and a cpk happened to
be on those labs
mom-of-bradley -- Her cpk was 1208
mom-of-bradley -- I had mine done after that and it was 1118
butch -- A simple DNA test will ease your mind as to whether you are a
carrier or not.
mom-of-bradley -- Normal is 0-230 Carriers sometimes have high cpk's
mom-of-bradley -- Well the thing is Bradley's diagnosis had to be
confirmed by muscle biopsy because it did not show up on the dna test
mom-of-bradley -- Although there is a new dna test
johnm -- Mom, I don't know how cpk relates to KD.
butch -- Mom of Bradley--we are on chat evewry other Sat. starting at
10:30 EDT. Come join us and share your thoughts.
mom-of-bradley -- Oh I am sorry-when I came in I had said Bradley does not
have KD but I wanted to visit anyway
mom-of-bradley -- He has Duchenne MD
mom-of-bradley -- I hope you do not mind
mom-of-bradley -- I would like to know more about KD
butch -- Mom--We don't mind at all. Sharing thought and Problem solving is
one of the main benefits of this chat. You are welcome anytime.
mom-of-bradley -- When do symptoms start-child hood?
mom-of-bradley -- I probably should read on it Anyone have any personal
sites?
johnm -- Mom, check out our web site, kennedysdisease.org
butch -- Symptoms usually appear inb males about mid 30 or 450's. Not
alwys but mostly in that time frame.
mom-of-bradley -- OK
mom-of-bradley -- http://mom-of-bradley.tripod.com if anyone interested
mom-of-bradley -- so do all of you have Kennedy's disease?
johnm -- Mom, There are personal letters and many other interesting links.
johnm -- Mom, yes, all of us have KD.
mom-of-bradley -- at that site that you mentioned?
butch -- I know we don't have much time left--so I'll say thanks for
joining today and stay healthy till next we chat. Goodbye to all. Mom--Yes
all of us have KD. Check out personal stories on the KD site.

END CHAT