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 - November 01, Open Forum

Kennedy's Disease Chat Transcript 11-01-2003

Topic: Open Forum

Host: Bruce Gaughran

Chat Participants:

johni
michigander
johnm
bruce
don48312

BEGIN CHAT

bruce -- Good Morning, Don
don48312 -- HI BRUCE
bruce -- What's the weather like over your way? We are in the 80's again
today.
don48312 -- beautiful here, 85 & sunny
michigander -- {welcome michigander}
bruce -- I am very thankful we moved south last January. This is great
weather.
bruce -- Good Morning, UTAH (I'm sorry, I forgot your name)
don48312 -- {welcome don48312}
michigander -- It's down in the 30's with the 1st snow just before
Halloween...it was in the 70's just a couple days ago in SLC
don48312 -- dont miss the Michigan cold
bruce -- The kids around here didn't have to wear coats to cover their
customes. How nice.
don48312 -- no kids here, all seniors
don48312 -- peace & quiet, lol
bruce -- We are right in the middle of the fall in Georgia. It is
beautiful. Our trees are now clearing out enough for us to have views of
both ridges and the lake below. I forgot how nice it was with the views.
bruce -- Since we moved up onto a ridge, we don't have any trick or
treaters. We are the last house at the very top of the hill. No one wants
to make the climb.
don48312 -- we started an addition to our home yesterday. will b a mess
till late Dec
bruce -- What are you adding?
don48312 -- adding a golf cart garage + enlarging my office to 600 sq feet
bruce -- Don, that sounds great. When we bought, one of my prerequisites
was a large office. I love it.
don48312 -- i spend many hours each day in my office/media room
bruce -- Utah, 30's is just too cold for me to even think about right now.
What are your winters like out there?
michigander -- We had a drought last year...the snowblowers that our
neighbors have were never used...this weather does slow my body down where
even putting the key in the car ignition becomes a challenge
bruce -- Utah, I understand. I remember those days of just walking from
the car to the office building in January. It was really fun when there
was a little ice or packed snow.
don48312 -- only ice i ever want 2 c again, is in a glass, not on car or
roads
johni -- I am with you on that one, Don
bruce -- I am still looking for that golf cart. My neighbor just can't
decide if he wants to sell his. It might be time to go shopping on the
open market.
don48312 -- a gazillion carts 4 sale here in southern FL
don48312 -- they manufacture ex-go in Augusta GA, just 100 miles from u
bruce -- Yes, Don, I have talked to the regional sales manager for EZGO
don48312 -- bruce, also consider a remanufactured golf cart, new motor
etc...
johni -- {welcome johni}
bruce -- Welcome John
johni -- Hi from cold, wet England
bruce -- Come see us! It is 80 degrees today in Georgia.
michigander -- This is Rick in SLC, so have I got this right...Don is in
FL, Bruce in Ga and John where do you reside??
don48312 -- i lived in Dublin for 1 1/2 years in 60's. gets wet and cold
there
bruce -- Well, this is an open forum today. We can talk about anything or
nothing. It is up to us. Anything specific on your minds this morning?
don48312 -- mich, what is SLC again?
michigander -- SLC is Salt Lake City where I've lived for just over a year
don48312 -- gotcha mich
johni -- Hale Village, Cheshire, England,
bruce -- Thanks for the name, Rick. It helps.
johnm -- {welcome johnm}
bruce -- Welcome John
don48312 -- morning Johnm
don48312 -- Johnm lives 1 mile from me
michigander -- I'm kinda nieve having just found this chat room a few
weeks ago...it would be neat if KDA had like a yearbook with pictures etc
of all the members
johnm -- Morning all.
bruce -- Rick, we really don't have members. We have associates. The best
we have going for us right now are the stories published on the web site.
bruce -- Besides, you wouldn't want to see what I looked like (LOL).
don48312 -- Mich, many of us dont want our names & pictures published on
WWW
johni -- You can see my rather handsome !!! features on the 'My Story'
bruce -- Terry and Susan won't be on today. They have to cross the
mountains this morning for some function.
bruce -- Have any of you tried Creatine? My brother is taking it right now
and he sees somes benefits with strength. I wrote Dr. Merry about it and
she thought it was safe.
don48312 -- bruce, my MDA neurologist told me 2 take creatine, but i
really dont feel any effects from it
bruce -- Her actual email states: Creatine has been studied in a number of
different scenarios, in treating transgenic ALS mice, and ALS patients,
and in treating transgenic Huntington's disease (HD) mice and HD patients.
The patient trials have been short-term (12 month) tolerance and
short-term effect studies. While the mouse studies were encouraging, the
data from the short-term human patient trials did not support a
therapeutic effect of creatine. However, that does not mean that the
larger longer-term trial will not show a positive therapeutic effect. The
good news was that the creatine did not produce any adverse effects. Your
brother should certainly check with his physician if he is thinking of
taking it, since the delivery/time of day/dose may be individual. There is
some information at the ALSA and ALS/MND websites. Also the
ColumbiaALS.org site (this is from Columbia University in NY). Also, the
HD study group (HSG) publishes their findings on-line. The Hereditary
Disease Foundation, and Huntington's Disease Society of America,
HD-Lighthouse are also good sources for the HD study.
johni -- I tried Creatin, but without any effect. I stopped taking it
because there were some concerns expressed in France over the use of it
bruce -- I liked the comment from Dr. Merry that the use of it should not
produce any adverse effects.
johnm -- I tried Creatin for awhile also but didn't see any help so quit.
bruce -- Can you amplify on the type of concerns from France?
johni -- It was something to do with cancer, I believe.
bruce -- Ref. creatine, that is what I had heard - no benefit. I am
anxious to see what my brother says in a few more months. He has been
taking it for about 2+ months now.
michigander -- So are any of you going to NOLA Monday...wish I could have
made it...maybe next year if on west coast
don48312 -- no NOLA for us
bruce -- Rick, unfortunately, I am not going this year. We retired this
year, moved to Georgia, and a family get together in November.
johnm -- No NOLA for us either.
bruce -- I have been reveiwing some of the presentations for NOLA. There
is going to be some great stuff presented.
michigander -- Probably about 10 years ago I was tempted to go to Ohio
State U for their steroid study just to meet the doctors involved with
KD...so it's neat to know if I can just save up there's a yearly symposium
bruce -- Rick, I was also interested in the steroid and testosterone (sp)
studies, but Dr. Fischbeck said I should wait. I am now happy I did.
michigander -- is the ALS/MND website www.als/mnd???
bruce -- Rick, I am not certain. I haven't gone exploring yet. Google can
probably tell you.
don48312 -- something important to do. enjoy the chat all, bye
bruce -- take care don
bruce -- My MDA doctor gave me a new exercise for the thumb, first finger,
and hand muscles. I have been trying it out for a couple of months and see
some improvement.
bruce -- What I like about the exercise is it uses my TV remote as the
exercise tool - HOW CONVENIENT!
johni -- Can you describe the exercise, Bruce. I will try anything
johnm -- Bruce, to me EXERCISE is a dirty word. I stay away from it as
much as I can.
michigander -- I find that the exercises the PT's recommend are either to
regorous or that I feel just keeping busy in life wears me out enough
bruce -- Sure, grasp your remote or any other object of similar size
between your first finger and thumb. Now, while gripping it tightly,
attempt to pull the remote out of the other hand. Grip and hold for a
count of ten. Practice it every other day for a couple of times a day. (I
can even see a little muscle between the finger and thumb again on the
hand).
johni -- Thanks, Bruce. I'll give that a go.
bruce -- Rick, I practice (exercise) for 2½ hours every day. I do it when
I wake up and before I retire at night. Through the years I have become a
little smarter and now call it my 'Smart Exercise' Program. My MDA doctor
loves it and has copied it for his other patients. The key is to listen to
your body. If you have over-done, it will tell you. Just back off a
little. Sometimes doing less is actually doing more ... good.
johnm -- Bruce, I have a couple spongy hearts that I squeeze on once in a
while while I watch TV.
bruce -- John, it is fun to see muscle again. Actually, the doctor
commented that just by stimulating the muscle group every other day it
will help maintain the muscle making it easy to walk with a cane, grasp
and hold items, etc.
michigander -- Speaking of remote fingers...have any of you had finger
problems similar to mine...a few years back the three far right fingers on
my right hand decided they didn't want to type anymore and my pointer
finger save the rest of my body from the full impact of the floor by
staying in the pointing position so I'd needs to be exercised once in a
while
bruce -- I think one of the most important parts of exercising is the
isolation and stimulation of muscle groups. Again, over-stimulation can
have an adverse effect, so we have to use our heads when we exercise
(something that I learned the hard way - a bull in the china shop type of
thing)
johnm -- My fingers don't do too bad with my typing. They hit the wrong
keys once in a while but overall they work pretty good.
bruce -- Actually, I believe typing is good stimulation for the finger
muscles.
bruce -- Rick, in cold weather my fingers don't work as well. When I lived
in PA, I often wore light gloves to keep them warm and limber.
johnm -- Bruce, I'm with you on the COLD. I'm lucky to get my pants
unzipped for the job when my hands get cold. That's why we're in Florida.
bruce -- John, I have to laugh at your comment. Been there. It is really
frustrating when you can't button up the pants or shirt.
johnm -- Johni, I don't like wearing long pants any more either. I am in
shorts and a short sleeve shirt as much of the time as I possibly can.
johni -- I have trouble with my hands too. Recently, I have been having
trouble with wearing anything with long sleeves! Which is a real problem
now the weather is getting colder
bruce -- Johni - what kind of trouble with long sleeves?
johni -- It restricts my movements. It is like wearing a straight jacket
bruce -- My brother moved to Arizona about ten years ago from Minnesota.
He has done remarkably well now that he is in warm temperatures.
michigander -- It was funny...speaking of zippers...I went to work at the
planetarium yesterday dressed as an alien...building was locked and I was
out in freezing temps for 25 minutes...when i got in I could bearly deal
with the zipper but the pant button was impossible which limited my
options in the mens room
johnm -- Bruce, I have stretch out on the bed to get my pants buttoned.
bruce -- Guys - I am really chuckling at your comments. Been there ...
been there ... been there again!
bruce -- These chats are good for me. I laugh so hard sometimes that my
wife is wondering what is going on.
johnm -- Isn't it amazing though what we can do by trying different
methods of accomplishing everyday tasks. Most people take these things for
granted.
johni -- Does anyone struggle like I do, when it comes to pulling your
shirt over your head, or even combing the hair on the back of your head.
bruce -- Johni - loose shirts and pants one size larger than normal are
okay. I agree that anything tight is very constricting and further reduces
mobility.
bruce -- Johni - yes to the shirts over the head and also taking them off.
I have to sit on the dresser or vanity to make certain I don't fall over.
michigander -- MY wife had to start giving me buzz cuts a few years back
so I would have to deal with the comb and thick bathrobes are near
impossible sometimes because of the weight to get them on
johni -- Yes, Bruce, but every size larger I go, I just end up filling it!
bruce -- John- LOL!
johnm -- Johni, sure. I have to get my arms in while the shirt is in front
of me. Then I can lift it up and stick my head in. Hair combing takes two
hand, one to hold the brush and the other to hold the brush hand. I'm
thinking of going BALD to keep from having to comb it.
bruce -- I still say laughter is the best medicine and today I am getting
a triple dose. Thanks guys!
bruce -- Johnm - that would work!
johni -- Hair combing has become two-handed, one mine, one the wife's !!
johnm -- Johni, I am having the same problem with filling my cloths.
bruce -- Okay, we have heard about laying on the bed to button the pants,
what other tricks of the trade do we have today?
michigander -- I imagine alot of you may do like I do brushing your
teeth...it requires an electric toothbrush and two hands
bruce -- I use to dress for fashion. Now I dress for comfort. Elastic
waste bands are great.
johni -- I tell my wife that our closets must be damp - they are causing
my clothes to shrink!
bruce -- Since I retired, shorts and sweats are the attire for the day.
johnm -- All of my shirts are pullover. I don't think I could get them
buttoned any more. I just don't dress up at all any more. If the occasion
requires formal dress, I just don't go.
johni -- Our friends often dress down for certain occasions, so I don't
feel left out cos I can't dress up anymore. No neckties or formal suits
etc
michigander -- I couldn't believe I stooped to resting on my knees last
week...we had some extra sod from a new lawn...and the neighbor didn't
have a banister up to their front door...so walla I had to get to the door
on my knees
bruce -- I think anyone who is honest will understand the crawling up
steps. I think these experiences help overcome the pride (ego) issue.
johnm -- Mich, The last time I went down I had to crawl to the bedroom
before I could get up using the bed.
bruce -- I had a section of a interior wall named after me at work. I
stumbled one day and hit it on the way down. A huge dent is now there and
they call it Bruce's corner.
michigander -- I can relate crawling to the bed...it I'm outside only the
car hood is high enough for a push up to get back up
johnm -- I have to stay away from STEPS completely. There's no way I could
even CRAWL up them.
johni -- I had a nasty accident coming home from the pub the other night.
Someone stood on my fingers. LOL
bruce -- Crawling is a humbling experience. I exercise every day on the
floor just to make certain I can still get up.
bruce -- Good One! Johni
michigander -- I can relate to Bruces corner too...my mother-in-law has a
big dent on the downspout infront of here house...but it sure helped
cushion the fall
johni -- I once fell in the bathroom, and grabbed the radiator on the way
down. it came away from the wall. It didn't stop me falling either! Tough
luck eh?
bruce -- I think if we could capture all of these stories, they would make
a heck of a book.
bruce -- Rick, you are still working right? I want to encourage you to
continue for as long as you can. I don't want to see Social Security go
broke. I need the checks.
michigander -- I don't know if I'd call it work...it's more of a hobby...
I wen't from working 60 hours a week back in Oregon to 20-30 hours here
with little pay but thank goodness my wife's job has only gone to
voluntary layoffs and not manditory yet (for the couch joke...all it would
take is my mother-in-laws can do attitude to get the couch through)
johnm -- My work is volunteering in our Computer Resource Center three
afternoons a week. I find it very satisfying helping people with their
computer problems.
michigander -- John and Bruce...I and the FSH friends I had back in Oregon
agree work is good... I love working with kids and other guests at the
planetarium... so much so that I wouldn't define it as work ... just fun
... thanks to the fact that my wife is the real bread winner
bruce -- You're right.
johnm -- Here comes a little joke since John-c isn't with us today.
johnm -- A man called his neighbor to help him move a couch that had
become stuck in the doorway. They pushed and pulled until they were
exhausted, but the couch wouldn't budge. "Forget it," the man finally
gasped. "We'll never get this in." The neighbour looked at him quizzically
and said, "In?"
bruce -- Good One!
johni -- Nice one, Johnm
bruce -- Another thing that helps me is the SUN. Just being outside with
the sun baking into your muscles and bones helps keep me limber and
feeling good.
johni -- Great to finish on a laugh. Gotta go now, you all take care
johni -- {goodbye johni}
bruce -- Are there any messages you would like me to deliver to the KD
Board today? We have a meeting this afternoon.
johnm -- Not really much profound wisdom dure the chat today but it really
has been enjoyable.
bruce -- I agree. It was fun.
bruce -- We have 15 minutes left.
michigander -- Does anyone take minutes or put together a summary at the
NOLA symposium???
bruce -- Rick, we are discussing taping the NOLA conference. Last year we
video taped it, but it was difficult and really didn't apy off.
Presentation will be made available afterwards I believe.
bruce -- The very best part of the conference is the doctor's
presentations and discussions. It warms your heart to hear these people
discuss their efforts in finding a treatment and/or a cure.
bruce -- At least a couple of times a year I write thank-you emails to
several of the doctors. I just want them to know how much I appreciate
their efforts.
johnm -- I really think that meeting others with the same problems is also
a very interesting experience.
bruce -- Johnm - I made some good friends at last years conference and we
continue to stay in touch. It is healthy.
bruce -- Ten minutes left - is there anything else that someone has on
their mind?
johnm -- I guess that's about it for today so I'll be signing off until
next time.
johnm -- {goodbye johnm}
michigander -- Great to talk to you all...hope to catch you next time
bruce -- Rick, thanks for joining us again today. Take care.
bruce -- {goodbye bruce}
michigander -- {goodbye michigander}

END CHAT