Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I had just been diagnosed with Kennedy's Disease and had no idea what it was or what to expect. The KDA maintains an excellent website that explains the disease. I found details on symptoms, the cause, and exercises I could do to maintain my strength."

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Kennedy's Disease Chat Transcript   06-04-2011

Topic:  Open Forum

Host: Mike Goynes

Stan
Gettimg back to normal after the storm last Sunday. Finally got power back yesterday. Sunny and 75 today.
MikeG
did you have any damage from any of the storms?
MikeG
hi UTE
UTE
Good morning Stan and Mike...weve had extra rain and then snow in the mts...moist spring moisture ever
Stan
Neighbor just lost a tree limb. No other damage. We were very lucky. Worst of the storm hit north of us and west/
Stan
Hi UTE
MikeG
yep - this has been a brutal spring!
MikeG
it's been hot and dry in FL
UTE
where abouts in Fla
MikeG
I picked up a bug on my way back from my Air Force reunion in Hawaii last month - had it for 3 weeks now!
MikeG
Tampa
Stan
It's been a little hot during the day here. I try to get things done in the morning or late evening when it is cooler.
Stan
Hope you are getting better Mike.
MikeG
doc started me off on Ceftin and then moved me to Levaquin earlier this week
UTE
mIKE...where all did your airforce days take you
MikeG
the congestion has gone into my inner ear - I can't hear a thing out of it!
MikeG
Keesler, Tyndall, & Yokota
Stan
That must work great with the wife Mike. A medical excuse for not listening. : )
UTE
Where are Keesler and Tyndall
MikeG
especially when I'm driving!
MikeG
hi Stewart
Stan
Hi Stewart
stewart
Hi, Good morning
MikeG
Boloxi, MS & FL
MikeG
and then there was Lackland... :)
UTE
The Navy took me to Korea
MikeG
we have some good news from the NIH - hot off the press...
Stan
They have a cure?
MikeG
The exercise trial has been approved and they plan on recruting patients in a month or so.
MikeG
Dr. Chris Grunseich will be on the next chat in July to tell us all about it.
UTE
excited to hear...sounds interesting...exercise is goog...too much is bad
MikeG
morning Billeric
billeric
Good morning guys
MikeG
yes, that is right
UTE
Good morning AZ or Minn???
stewart
I was wondering about that, I told them I was inrestersted in being a part of the trail
Stan
I get enough exercise around here, they can come and watch.
MikeG
they told us at the last conference it will take several months to finish selection of patients - I'm sure going to be there knocking.
billeric
No to both ute.  My care giver went down so we had to move closer to our son--Cincinnati, Ohio
MikeG
:)
UTE
At least your still a Midwesterner Bill
Stan
The problem with the trials is they are never anywhere close to where I am.
MikeG
true
billeric
A little hard to get used too after 20 yrs in the West.  Gotta do what you gotta do!
MikeG
Cincinnati got their share of the bad weather too
UTE
Bill, you're probably still pretty close to a lake
billeric
Our son has a nice boat on a local lake.  Helps!
billeric
Never expected the care giver to give out before me-but it happened.  Something for all to think about.
MikeG
any kyakers here?  my neighbor has offered to take me on a kyak trip next week... I don't know how I feel about it - it's been over 30 years since I've been in one.
Stan
Nope. Strictly pontoon boat for me.
MikeG
yep - can't get along without your caregiver
MikeG
I think if I take it easy and go slow I'll be ok.
billeric
I would not be able to get in one.  Someone would have to lift me in it.
MikeG
I sure can't rush anymore!
Bruce
Morning Everyone!
Stan
Hi Bruce
stewart
I have Kayaks sit on top type a single and a tandem
MikeG
how's your neighborhood Bruce - back to normal yet?
Bruce
No, it will be many months before that happens.  However, there are signs of progress as framers work away at rebuilding some of the houses lost.
MikeG
yeah, that would be better than the ones my neighbor has - you sit in them...
UTE
Stewart, hows the weather where youre at
stewart
June gloom here
MikeG
that's good - was anyone killed on your street?
Bruce
We lost eight on our road, unfortunately.
MikeG
WOW!
MikeG
you guys WERE lucky!
Bruce
Yet, when we see the damage in Joplin, we feel blessed.
MikeG
too close for confort though...
UTE
Bruce, youre in Missouri now?
Bruce
FYI - See my blog post for Thursday about the University of Michigan study on perceptions about being handicapped.
Bruce
Ute, no, we are in Georgia and had an F-5 come through with 195 mph winds.  It turned as it came over the mountain just west of us and wiped out homes and trees for several miles.
Stan
I read that Bruce. Closest study I've seen to where I live.
Bruce
I am looking forward to seeing the results, because it plays so much into the aspect of "attitude" and "acceptance" that I write about all the time.
Bruce
The only handicap is a bad attitude!
MikeG
TRUE
Stan
What about Golf?
MikeG
and car shows?
UTE
Bruce...can I access youre blog going thru the KDA site?
Bruce
:p
Bruce
Yes, there is a link there to the blog "Living with Kennedy's Disease".
stewart
Brue howz the Dutasteride working for you? That sounds interesting the study mean. it's hard getting my brain around the fact that I'm getting old FAST.
Stan
I used to consider myself handicapped. I call myself physically limited now.
Bruce
For 3½ months I felt on top of the world and gained strength and stamina.  This week I have felt more human again, but am still far stronger than I was before starting.  It could just be "one of those weeks" but I will know more as time goes on.
MikeG
that's about what I experienced
Bruce
I am happy I decided to start dutasteride and feel it was one of those "meant to be" moments.
stewart
Thanks
Bruce
It could also just be my arthritis acting up and causing me a lot of pain in the joints.
Stan
I'm concerned how it may interact with my other meds.
MikeG
Bruce, has Cindy or anyone else noticed a change in your strength or walking?
Bruce
Yes, several people have commented about my energy and strength.
stewart
The 0.5 dose the same as in the medical trial?
Bruce
Yes
MikeG
yes
Stan
Ooooo, Superman
MikeG
lol
Bruce
Again, my joints have been bothering me terribly this week and that limits the enjoyment of exercising.
Stan
I need some cinder blocks moved.
MikeG
Bruce, are you planning to go to Bethesda for the exercise trial selection process?
Bruce
I still exercise 100-110 minutes every other day and 15 minutes on the off days.
stewart
that's great I was reading about the trail last month
Bruce
No, Mike, I talked with NIH about it and it would change my routine.  I don't want to mess up what is already working for me.
MikeG
yep!
Bruce
I figure there are a lot of younger bucks out there that can participate.
MikeG
if it works - don't fix it!
Bruce
I still would like to understand the change that occured when I started.  It was amazing.  What caused the body to change when I started taking dutasteride?  Something specific had to have happened to make the positive impact on my muscles.
UTE
I wish there was a machine that could detect where a persons nerves and muscles were wasted and where they were in good shape to exercise
Bruce
Ute, the focus has to be on muscle groups as we age.  Our muscles compensate for the loss of strength and other healthy muscles continue to be stimulated by the motor neurons and function better.
Bruce
Muscle memory plays an important part in this process.
MikeG
yeah, at least with me, it was like a blot of lightening hit me and then after a year it dissipated...
Bruce
But it was a fun ride while it lasted
MikeG
it will be interesting to see if you have the same results
Bruce
It would just be interesting to see an explanation of the change in my muscles ... why they started functioning so much better and continue to function better.
MikeG
I would have thought the trial would have discovered that short burst of strength
UTE
My doctor always tells me my whole is greater than the sum of the parts...as nothing seems to work very good but my whole seems to get me by slowly but surely
MikeG
maybe it was over by the time they tested.  Didn't they test at 6 mo intervals?
Bruce
I will be publishing an article tomorrow on "exercising more slowly" to improve the workout.  There was a great article I read on the subject.  I gave it a try during Friday's workout and it really worked.
Bruce
Stan, how did the car show go?
stewart
Well guys got to go (need to buy tires for the car) thanks for sharing I will look for the article. Thanks
Bruce
Take care
stewart

Bruce
Mike did you mention the upcoming chats in July and August?  NIH in July and Ed Meyertholen on the Gordon Conference in August?
MikeG
I did mention the NIH in July
Stan
Badly. I thought Lou sent a note from Carla. It rained the entire day with 30+ mph winds. Only 10 cars showed up out of what is usually hundreds... We're looking at two more shows coming up.
Bruce
Bummer!
MikeG
too bad
Stan
See you stewart
MikeG
I want some shirts - how much are they going for?
Bruce
For those interested, the Gordon Conference is in Italy this year.  It brings together researchers from around the world who have a specific interest in CAG Repeat disorders including KD.  The conference is held every other year and the KDA sponsors a couple of young researchers attendance.
Stan
I know Mike. We talked about that. I have them here to mail to you. (found the address). I'll check with Carla.
MikeG
let me know how much and we'll take 2
MikeG
medium
Stan
The note I have from when we talked was one L and one M. Who lost weight?
Bruce
We need some of the cool Florida temperatures sent our way.  This breaking or tieing records for highs every day is getting old.
MikeG
:)
MikeG
92 - 96 here... want some now?
Bruce
Going back to the tornadoes, we are most fortunate to have volunteers coming from all over the country to help with the cleanup and rebuild.  It amazes me how wonderful people are.
MikeG
what we need is some rain.  Trade?
Bruce
We need rain badly.
MikeG
if we could just control the climate......
Stan
We've had plenty of rain. Farmers are concerned about their crops.
Bruce
Well, I need to get busy, guys.  It was great chatting with you.  Mike, thanks for hosting the chat today.  Take care everyone and stay upright.
MikeG
see you later
UTE
We're in the desert...but we got nearly a foot this spring...witch was a record for moisture...crazy
MikeG
wow - that is crazy!
UTE
Have a great weekend guys...good hearing from you Bill
billeric
See you guys later.  More unpacking to do.
MikeG
and then there's the flooding
Stan
Local lake was up 3' from normal due to the rain. It's dropped about a foot now.
Stan
Ok, bye billeric
MikeG
ok Billeric
Stan
I guess I should sign off and see what the wife has for me to do. Bye UTE.
MikeG
I need to get out of here and go to the PO before it closes.  I better have two rent checks or it's going to get nasty!
MikeG
take care Stan!
Stan
Next time, Mike. Check out my latest post on Facebook.