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   04-02-2011

Topic:  Open Forum

Host:  Terry Waite

 

MikeG
Hey Terry & Stan
Stan
Morning Terry
TerryW
[b]Hi Mike.  Stan
Stan
Hi Mike
TerryW
[b]Mike, a lot of nice planes got messed up inthat video you sent me
MikeG
I tried using Google's Chrome to get on the chat and got the message that my Jave was out of date... so I used Firefox.
MikeG
Yep - it was really a disaster!
TerryW
[b]I am in chrome now and works fine
MikeG
I guess I need to do the weekly update... :)
TerryW
[b]yep
Stan
I still use IE. Just did a bunch of updates. I have noticed that the pdf function does not work on the web pages on the site. It may be my computer, but it works ok otherwise.
MikeG
The code you sent kept disappearing when we made a change to the chat schedule so Bruce moved the schedule to another link...
TerryW
[b]ok,  that is what must have made is dissapear the first time
MikeG
That's the old reliable backup for me, Stan.  If all else fails - IE always works.  It's just so slow though!
Stan
Mine's not slow.
MikeG
yep -and when we would add it and go back in it was gone if we tried to look at the HTML code.
Stan
I do have FireFox as a backup.
MikeG
so now the chat page is STATIC!
TerryW
[b]I stopped taking the Avodart Mike
MikeG
WHY!
TerryW
[b]While taking it I fell 2 times and had not fallen for a long time prior
MikeG
wow
TerryW
[b]wierd
MikeG
how long had you been taking it?
TerryW
[b]2 weeks
MikeG
INTERESTING!
TerryW
[b]may have been coincidence
TerryW
[b]but was not going to take any chances
MikeG
I took it for about 2 months and everyone was telling me how much better I was walking - then, after about a year, I started goiing downhill...
TerryW
[b]hmmm
TerryW
[b]The weather is finally getting warm here and staying light later, I am happy
MikeG
it could have been the normal progression of KD though...
MikeG
yep - we've had 87 so far.
MikeG
it's nice now - after that storm brought cooler weather.
Stan
It's getting up into the forties here during the day now.
MikeG
60 this morning and 76 today
TerryW
[b]it will come Stan
MikeG
yep - and then you'll be hotter than FL
MikeG
:)
TerryW
[b]be right back
Stan
I don't like it when it gets over 80
MikeG
Stan, were you ever a pilot?
Stan
Nope
MikeG
well, even so - check out the damage to this air fest Thurs:  http://www.aopa.org/aopalive/?watch=ttYnZjMjo4dW7_E15H63ZbYk8yNSXs88#ooid=ttYnZjMjo4dW7_E15H63ZbYk8yNSXs88
MikeG
morning pooh
Stan
Hi poohsdaddy
TerryW
[b]I am back
loshimo11
Good morning everyone.
TerryW
[b]hey there
loshimo11
How's everyone this morning?
Stan
Morning Luis
MikeG
hew Luis
poohsdaddy
Good Morning.... Very tired today.  Our son surprised us and got married on Thursday afternoon.
TerryW
[b]We have a new young Mountain lion in our backyard lately
Stan
Still here. Ben feeling a little under the weather for about a week, but ok.
TerryW
[b]Got video of it
TerryW
[b]and pictures
TerryW
[b]This is the 2nd time in a month I have seen it
Stan
That's a houscat, terry according to one of your friends. : )
loshimo11
Terry...Will that be available via Facebook?
poohsdaddy
How's Susanne doing in the "voting" ??
TerryW
[b]LOL
TerryW
[b]They officially announce if she made it to the top 10 on Monday
MikeG
we've been trying to see the Florida panther that's been seen behind our house but so far - no joy!
poohsdaddy
Got the e-mail about the KDA cookbook; and plan to submit a couple of our favorite recipes.....
MikeG
that's GREAT!
loshimo11
We recently had an incident locally where the cornered off a mountain lion in someone's backyard. Of course, instead of shooting it with a tranquilizer, they just shot him dead.
TerryW
[b]I hate it when they do that
TerryW
[b]terrible
MikeG
what a waste!
loshimo11
Their excuse was because once the cat was cornered, he began hizzing(?) (sp). So he/she became a danger to all around. What kind of logic is that???
MikeG
my neighbor had a 5' alagator in her back yard a few months ago - still would like to see how he got over the 4' fence to get in...
TerryW
[b]I tried a little garden weeding yesterday for about a half hour now I can hardly move or lift my head
poohsdaddy
Did I see something.... about another Pepsi Challenge..... opportunity  ??
TerryW
[b]This sucks
Stan
I know that feeling Terry.
TerryW
[b]I had to crawl across the grass to get to a patio chair to help me get up and was barely able to get back up
MikeG
I know exactly what you're talking about Terry.  I have 4 EarthBoxes to plant and I've been putting it off as long as I can now... tomorrow is it though!
Stan
Sounds like me. Crawling to the nearest place I can use to get up.
loshimo11
Has anyone experience a bit more shortness of breath lately? Don't know if it's the nice weather or what but it seems like I run out of breath pretty easily these days.
MikeG
not me
TerryW
[b]when you keep your head down looking at the ground for any time you don't notice the strain that it puts onthe neck muscles until you go to lift your head back up
MikeG
how's your blood pressure?
poohsdaddy
We're still having "mixed precipitation".... so, too early for any yardwork.
Stan
I have it all the time, but not KD. COPD for me.
TerryW
[b]I have Luis, but I think it because of allergies, everything is in bloom
loshimo11
Not familiar with COPD. Will need to do some research. Any quic info on how to deal with the symptoms?
MikeG
we had some mixed precip Thurs but it was hail and rain - not the colder stuff... :)
Stan
Nothing in bloom here yet.
TerryW
[b]COPD is no fun, my stepdad had it
Stan
Luis, you probably don't have COPD, and you don't want it either.
MikeG
all the bulbs that I got from that fundraiser of Susanne's came up - really beautiful!!
poohsdaddy
My brother-in-law has that; and is on oxygen almost all the time.
TerryW
[b]Mike ours are up but not all of them yet
MikeG
that's a great place to buy from - I'll do it again in Nov.
Stan
My Iris' and Tulips are starting to pop through
poohsdaddy
Terry or Mike, Do we have any guests on the schedule ??  Seems that more guys participate when there's a guest speaker ......
loshimo11
Had my yearly muscular dystrophy checkup last month. Mr. Md. had my breathing checked along with all other muscles... According to him, my muscle strength is declining at 1% a year which is about half normal.
TerryW
[b]That is not bad Luis
MikeG
yeah, I'm going to try for Angela next chat... I'm curious about the exercise trial that we were told would begin in March.......
MikeG
not bad Luis!
Stan
I should schedule a visit, but it's 90 miles away to the nearest location. That's a waste of a whole day.
poohsdaddy
I'd definitely like to participate if they want to try something new....
MikeG
we were told that selection would start in March but the cuts in budget may have affected that.
MikeG
I sure hope that didn't affect ASC's research in J9!
poohsdaddy
:?
MikeG
they were supposed to have secured a $3M grant for development in an oral J9 drug.
MikeG
I hope everyone signed that petition to prevent cutting funds for NIH research
poohsdaddy
?
MikeG
I think it came from the MDA...
poohsdaddy
What petition ?  Did I miss something important again ??
MikeG
I'll see if I can find it... BRB
Stan
Anyway Luis, to answer you earlier question on your breathing difficulties, see your doctor. He can give you a lung function test, etc. to determine what is causing the shortness of breath. It could be allergies. You may just need an inhaler once a day, or a pill.
poohsdaddy
I forwarded the "Energizer Bunny" info to my e-mail list.... And am glad to help any way that I can to help rtaise funds for KDA !!
Stan
The petition link is on the KDA site. I saw it last night.
loshimo11
Thanks Stan. Maybe I'll do that. I had a lung capacity test last month and it came back normal (for someone with KD).
TerryW
[b]thanks Pooh
MikeG
found it - actually Bruce sent it!  http://www.ipetitions.com/petition/preservenihfunding/
loshimo11
So, with summer coming up... Anyone have any vacation plans?
TerryW
[b]We have lots of stuff going every weekend
MikeG
Hawaii next month
loshimo11
We might try going on a cruise. My mom's 90th birthday!!!!
TerryW
[b]Mike ,  when you going to AUssie land
MikeG
then Australia in Nov - Dec... :)
TerryW
[b]ok
Stan
No vacation plans. Too many other things going on.
loshimo11
MikeG... Thought of doing Hawaii but I'm intimidated with all the disability issues/challenges/
TerryW
[b]Mike, Hawaii is pretty accesible, I don't think you will have any issues there other than trying to walk on the sand
MikeG
yeah, I'm concerned too but it's my Air Force reunion and there are a lot of strong guys that will be able to carry me anywhere I want to go... my sone will be there too.
MikeG
son
MikeG
always to see the Arizona...
MikeG
wanted
TerryW
[b]Mike when you go in the water make sure you have a place where you can get back out easily where they is something you can grab or have someone to help you out
poohsdaddy
I agree with you Luis.... I rarely go anywhere anymore.  But it felt good to get out the last couple of days.
MikeG
yeah, I have enough trouble getting out of the beach here at Siesta Key - and it's not much more than a lake...
TerryW
[b]If you take one of th catamarans out on a snorkel trip make sure it has an accessible swim platform near water level, amd let the guys know that you will need help to get back up on it
MikeG
I usually crawl the last few feet and then point myself up hill and stand up - at least try.  Paula is a great help there.
poohsdaddy

loshimo11
We've had some very rare warm weather here in San Francisco the last few days. I was able to just jump into my SUV (jump???) and drive around aimlessly for hours. Nothing special, just the freedom to still be able to do that and enjoy the scenery and warm temperatures.
Stan
With all the bad experiences I've had traveling, I don't feel like pushing my luck.
MikeG
yeah, that's what I did when we went swimming with the manatees.
MikeG
yes - it's nice to be able to drive!!!
MikeG
I remember when John Mengel hit his head and could no longer even get in hi brand new Toyota van... he was devastated!
loshimo11
Driving is one of the very few things that I can do as well now as 25 years ago.
MikeG
me too
TerryW
[b]Trying to get out of the water on a beach with sand and waves is a real problem for me unless I have 2 people to help me
TerryW
[b]I still drive fine also.
MikeG
yep - the waves and shifting sand are really a problem!
TerryW
[b]I don't think any of us KDers drive a stick with a clutch do we?
MikeG
NO WAY
Stan
I still do normal driving. No more racing. Leg gets tired operating the clutch.
loshimo11
Gave up driving a stick shift back in 1989...
MikeG
I used to have a truck but it got to the point that I couldn't hold the clutch in anymore.
MikeG
well folks, I've got to go run some errands... hope everyone has a great weekend - stay safe!
loshimo11
Take care MikeG...
MikeG

Stan
It's been about 10 years since I drove anything with a clutch. Had to opt out of a spin in the Ford GT when it came out. Could not depress the clutch.
TerryW
[b]What about the automatic version
Stan
Didn't have one.
TerryW
[b]oh
TerryW
[b]Well not much of a showing today
loshimo11
Well... the wife is up and I'm starting to smell bacon.... Will be leaving the chat soon.....
TerryW
[b]I have got to run and help susanne with something.  see you next time
poohsdaddy
174.102.143.188
loshimo11
Take care everyone!!!! Stay healthy and upright!!!!
Stan
Not much to talk about either. Might as well close up shop.
Stan
Take care Terry, Luis.
elvspretzl
Ummm, I'm a little late.
Stan
Poohsdaddy, you're back. Welcome elvspretz.
elvspretzl
No much to report except that I'll be visiting the NIH on Monday.
poohsdaddy
Yea, got bumped.... Good to be back.
poohsdaddy
I made breakfast earlier.... One of my Favorite "chores".  I still like cooking and being able to eat... and even doing the dishes !!
elvspretzl
@ Terry ... I still have a truck with Standard transmission. I seem to do okay with it for now. The parking brake (foot) is the hardest part.
poohsdaddy
I came up with a new recipe last week by making Creamy Celery Soup.
poohsdaddy
What's up at NIH elvspretzl ?
poohsdaddy
Are you nearby ?
Stan
I think Terry left and neglected to log out.
elvspretzl
I will be seeing one of thier KD specialist and maybe participating in a clinical trial next fall.
elvspretzl
The trial is an exercise trial.
poohsdaddy
Stan, How are youy lately ??
elvspretzl
Flying down to D.C. from R.I. tomorrow a.m.
Stan
Ok. Have been fighting a cold, but ok.
Stan
We were discussing the exercise trial  earlier but didn't have any info.
poohsdaddy
elvspretzl, Are you on Facebook ?  Many of us with KD are already active there.
elvspretzl
I should have some more info in two weeks.  Will try remember to get online when this chat starts rather than when it's about to end.
poohsdaddy
Stan, I know what you mean.... That bug keeps going around.  Our sons and grandsons keep giving it back.
Stan
I'd like to hear more about trials. I don't see many on the sites, and none close enough for me to participate.
elvspretzl
Does f.b. have a KD group?  If not, I'd be glad to start a "Private" group.  Only members would be able to see content.
elvspretzl
Just a thought ...
Stan
Yes, the wife has a touch of the bug. On meds. I'm fighting it too. Must be the weather change. It's going around everywhere here.
Stan
There is a KDA page on FB. Could probably set up a group
poohsdaddy
Yes... I'll have to check that too.  elvs, That's a good idea !!  Nearly time to go....  Have a great few weeks both of you !!
Stan
Take care poohsdaddy.
elvspretzl
I swam five laps yesterday and feel as though I could again today. That's a change.  Just started a month ago.
elvspretzl
Until next time, poohsdaddy.
poohsdaddy
Thanks again guys for being here !!  Got company coming at noon and have to get ready.  See you next time ....
Stan
I don't swim. Never could. I just sink
Stan
Well shoot. Anything else to talk about? If not, last one out shuts off the lights.
elvspretzl
The hardest part for me are the stairs going into the club (athletic club) stair down to the locker room, then stairs to the pool.
elvspretzl
No, I'm ready to go ... Take care.
Stan
Stairs are, and have been an issue for me fo a few years now. I can manage one flite, but that's it.
elvspretzl
I hate stairs.  I probably won't sign for regular membership at this club. Just started 3 weeks ago.
elvspretzl
Paid for one month.
elvspretzl
The "Y" is cheaper, but I visited there and it was filthy!  But, all on one level.
Stan
No elevator? Even a freight elevator. I know I used the freight elevator at some places. I ask if one is available.
elvspretzl
Nope, they don't have one.  I asked and they said they've considered it in the past, but it's too expensive.
Stan
Yep, that sucks.
Stan
How do they get around the ADA laws?
elvspretzl
It's a private club I suppose. Membership is open to the public, though.  Maybe they're grandfathered ??
elvspretzl
I don't know very much about those laws.
Stan
I'd have to read-up on them again.
elvspretzl
Well, I should let you go.  I have to get the second part of my breakfast (late).
Stan
Ok. It's lunch time here. Got a few chores to do anyway. Take care until next chat.
elvspretzl
It's lunchtime here too ... I just slept late.  ;)
Stan
Take care.
elvspretzl
You too.
elvspretzl
I got the lights.