Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Back in the late 1990s, I felt alone. I had just been diagnosed with Kennedy's Disease. I came across the KDA and attended a Saturday chat. What an eye opener! There were two dozen others on the chat that were going through what I was experiencing."

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Kennedy's Disease Chat Transcript   10-01-2011

Topic:  Open Forum

Host:  Mike Goynes

 

UTE
Good morning Ted and Moseremous...hows it going
TedA
great
MikeG
Morning all
UTE
Morning Mike
TedA
morning Mlke
MikeG
what a nice day we have in FL today!
UTE
Same here in slc
Moseremous
Hello all from down under
TedA
Nice in Richmond, VA too
MikeG
we're going to go to a farm and pick peas & beans
TedA
fresh vegs are always good
UTE
Morning Bill
Moseremous
fresh is best!
MikeG
yes, we love the purple hull & blackeye peas
billeric
Morning guys   Not so great in Cincy-cool and windy.
MikeG
I've got a lot of stuff growing around the house too
MikeG
cool is nice... we've had a HOT summer here
Gary_KC
Good morning. This is Gary joining in from Kansas City. It is sunny and 51 degrees this morning.
MikeG
what's the temp down under, Chris?
MikeG
72 here
billeric
This is our first year in the North in the last 20.  A real experiance
Moseremous
just getting into spring here in Brisbane around 27 celcius
billeric
Sounds good to me!
Moseremous
thats around 84
UTE
Chris...what time is it there?
MikeG
we're going to finalize our flight plans this coming week... can't wait to get down there!
Moseremous
12.32 a.m. sunday morning
MikeG
thanks for staying up late and chatting with us!
Moseremous
if it wasn't for the champagne i'd have been asleep three hours ago. haha
MikeG
:)
Moseremous
wouldn't miss is mike
Moseremous
I'm off to Samoa for a weeks holiday in two weeks time
Moseremous
a week in the sun
MikeG
has anyone had any bad falls lately?  I've been really lucky - haven't fallen in months... kinda think I'm pressing my luck walking around with the cane.
Moseremous
Organised a direct flight and a disabled appartment
Moseremous
all flat ground
MikeG
nice
TedA
No falls in about 5 months
MikeG
good
MikeG
beem sailing lately?
UTE
Had a fall about three weeks ago...fell on side of leg from Knee to hip...no breaks... but taking forever to heal
TedA
Was in Hamilton Canada from 7/28 - 9/3 for the Rotary Mobility Cup.
Gary_KC
MikeG: Yes, I used to have a cane to avoid the falling. It really helped me.
TedA
28-Aug
MikeG
I use a walker most of the time in the house now.
MikeG
wow - I bet that was nice Ted!
TedA
4 days of sailboat racing, 13 races total and I got 4th of 11 in my class.     5 countries represented.
UTE
Sailings the greatest...but havent done any since I was a kid with a nipper in Michigan
MikeG
I have a lot of low back pain due to walking but as long as I can still walk I'm going to avoid going to the chair...
Moseremous
Hey checkout http://mytrailersailer.com/gallery.html My brother and i were building a trailer sailer
MikeG
the local MDA puts on several mobility sailing days in Clearwater & St. Pete every year - I always sign up if I'm here.
Moseremous
until the unthinkable happened
MikeG
We'll be in DC for the one in November though... :(
TedA
What is in DC in November?
MikeG
KDA conference
TedA
Thought you were refering to sailing
MikeG
That's pretty cool Chris!  Which one is you?
MikeG
Clearwater sailing in November but I'll be in DC
MikeG
wow - I just looked at the last video... that's HORRIBLE Chris!  What happened?
Moseremous
HHA movie seven, I am the short one
MikeG
electrical?
Moseremous
yes
Gary_KC
Does anyone have update for NIH excerice trial and ASC compnay's ASC-J9 testing?
TedA
I had my room booked for the conference, then my neice in San Francisco Bay Area announced her wedding on Nov 11th and wants me to be there for that.     Since I raised her from age 12 through 1 year of college I have to go to the wedding.     Sorry to miss the conference.
MikeG
too bad
MikeG
I talked to Dr Shih from AndroScience and he stated that the oral J9 drug has been released for testing in small animals by he NIH.
MikeG
we thought it would not be until January so I guess they're ahead of it there...
MikeG
the exercise trial is in progress but I'm not going until January
Gary_KC
MikeG: Thanks for the update. It is a good news for us.
MikeG
there should be a lot of info available at the conference.  We've got several doctors lined up and the reasearchers will give their latest findings.
MikeG
good things are developing for us - we just need to try to be patient... although it's hard.
MikeG
I'm looking forward t hearing from the nutrionist about eating right.  I think diet is a major factor for our ability to stay walking.
Gary_KC
I wish I can attend the conference, but I can not travel by myself with my bad heath condition. :-(
MikeG
a lot of folks are in that same position Gary.
MikeG
most do not even attempt to fly.
MikeG
We're considering the train to DC.  It's been years since I've taken a train... the Bullet from Tokyo to Osaka might have been the last one I rode.
MikeG
I think I can get around with my chair fairly easily on the train.
MikeG
or let them store it and use my walker
billeric
I would enjoy the conferance but with the caregivers problems it won't be possible.  Sure would love to attend.
MikeG
they are very informative and Ed always gives us the translation of the latest KD news from the doctors and researchers.
billeric
I have been to two of them.  Loved them both.
TedA
Mike, guess I doing good since I travel, live and do many things by myself.    Maybe the Avadart is the reason!?
MikeG
could be - several folks have started using it and have reported good results.
MikeG
how long have you been taking it?
billeric
Do you use the prescribed dosage Ted or have you increased it?
MikeG
hey Bruce
TedA
I was on  it for the trial (6/06-6/08), then took me about 18 months to get back on it and have used it ever since.
Gary_KC
One of my friends who has SBMA and taking Avodart in Japan read the 6 months update of dutasteride in Bruce's blog. He was very encuraged and has begun exercise. He really appreciate for Bruce. We miss Bruce today.
Bruce
Morning, Sorry I am late, but wthere was a lost black lab in the neighborhood and I was trying to find it.
MikeG
better late than never...
MikeG
good timing though... :)
Bruce
Avodart ... my favorite subject this year
MikeG
I bet you've got some beautiful weather up in Ringgold right now!
Bruce
Mike, I see you rode the bullet train.  I did also and it was quite the experience.  China's bullet train except for the recent accident has been setting speed records.
MikeG
it was 68 here this morning
Bruce
It is cool ... 46 this morning and 53 right now.  But NICE fall weather.
MikeG
yeah!
MikeG
love it!
MikeG
yep - it had a speedometer in every car and it usually showed 120KM/Hr if I recall correctly.
Moseremous
Hey guys, anyone experinced shoulder pain? Have just recently been feeling like i've been hit in the shoulder blades by a baseball bat.
Moseremous
Never felt it before
MikeG
not me - just low back pain.
MikeG
have you been lifting things more than usual?
Gary_KC
I took the bullet train for 40 years ago when I was high school. A new type of train called Rinia Motor train is being planned between Tokyo and Osaka.
Moseremous
Only shopping bags
billeric
I haven't had any real sharp pain, just dull leg pain.
MikeG
I've had that too
Moseremous
Just annoying not knowing what caused it
MikeG
I went to Expo 70 several times in the Bullet train.
Bruce
When it gets below 50, the arthritis in my knees starts to act up.
MikeG
you haven't started rebuilding that boat have you?
MikeG
that would do it for me!
TedA
My pains are mostly dull and constant pain in my hips and shoulder joints.     Hot tub helps a lot with reducing the pain at least temporarly
Moseremous
No mike, might take a few years till we get finances up again
MikeG
hot tub is what I use - every day!
TedA
Do you still use steps to get in and out of the hot tub?
Bruce
If it gets much cooler, I will need the electric blanket again.  That always helps the joints.
MikeG
You must still be in pretty good shape to be able to build such a boat.
Paul Sramek

Moseremous
Yes, walking okay on flat surfaces
Moseremous
My brother who is the person behind the build does not have kennedys
Bruce
Moseremous, I missed the earlier part of the chat, what kind of boat?
Moseremous
it is really his project
UTE
Every once in a great while I get a sharp pain in the bone below my shoulder...the doctor that diagnosed me with kd said I will always be in great shape as long as I can shrugg my shoulders
MikeG
http://mytrailersailer.com/gallery.html
MikeG
unbelievable!
Moseremous
sorry BNruce see http://mytrailersailer.com/
Bruce
Thanks, Mike.  I loved to sail!
MikeG
that's good to know ute
Moseremous
Sorry Ute, does that mean you shrug your shoulders as exercise?
Moseremous
Sounds a good idea
Bruce
That and trying to press your shoulder blades together are good exercises.
UTE
I guess thats what she meant when she told me years ago...
Bruce
The second exercise forces you to sit up or stand up straight.
Bruce
Rolling your shoulder forward and backward is also good.
MikeG
it will be interesting to see what exercises the NIH has in store for us during the trial...
Bruce
Do we know whether anyone else has been accepted for the trial?
MikeG
not yet
MikeG
haven't heard from Angela in several weeks.
Bruce
Mike, did you mention ASC-J9 and the oral trial on larger animals?
MikeG
yes, nice that it's ahead of schedule isn't it?
Bruce
That still holds a lot of promise
MikeG
I just hope the results will be as good as the injectable drug...
MikeG
ok, it's time for us to go pick purple hull and blackeye peas before it gets too hot - already 75 here.  Take care everyone and stay safe!
billeric
Thanks Mike
Bruce
It is always difficult to tell how things will work when moving from an injection to oral delivery.  The stomach acids break things down.
Bruce
Thanks for hosting us today Mike
MikeG
Connection reset by peer
TedA

UTE
Youall have a great week...time for my lifeguard to help me in and out of the tub
billeric
Bye ute
Bruce
Well, I need to get back out and see if I can locate the dog.  It doesn't have a collar so I hope someone comes forward claiming it soon.
Gary_KC
Thanks all. Talk with you at the next chat.
billeric
Bye guys.  Stay  upright
Bruce
Stay upright!
Moseremous
Good night all