Myotonic Chat Group
PaRay (Jun 18, 2008 8:37:50 PM)
PaRay (Jun 18, 2008 8:43:32 PM)
Good Evening.
Robyn-G (Jun 18, 2008 8:44:31 PM)
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PaRay (Jun 18, 2008 8:44:53 PM)
Hey Robyn. How goes it?
Robyn-G (Jun 18, 2008 8:44:56 PM)
Hey there!
Robyn-G (Jun 18, 2008 8:45:08 PM)
It goes...though this state doesn't realize its June yet....
Robyn-G (Jun 18, 2008 8:45:14 PM)
How is Ray?
PaRay (Jun 18, 2008 8:45:29 PM)
Good. ///
Robyn-G (Jun 18, 2008 8:45:32 PM)
I saw Suzette on Instant messenger earlier, thought she might pop on here for a bit.
Robyn-G (Jun 18, 2008 8:45:37 PM)
anything new?
PaRay (Jun 18, 2008 8:45:57 PM)
Not that I know about. How about you?
Robyn-G (Jun 18, 2008 8:46:20 PM)
not so much
PaRay (Jun 18, 2008 8:46:37 PM)
What have you been up to?
Robyn-G (Jun 18, 2008 8:47:03 PM)
mostly my own training and teaching martial arts
Buddy (Jun 18, 2008 8:47:19 PM)
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PaRay (Jun 18, 2008 8:47:27 PM)
Staying busy. That is good.
Robyn-G (Jun 18, 2008 8:47:29 PM)
i'm gonna start working at a gym when it opens...should be a few weeks.
Robyn-G (Jun 18, 2008 8:47:32 PM)
ya, it is good
Buddy (Jun 18, 2008 8:47:53 PM)
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Robyn-G (Jun 18, 2008 8:47:53 PM)
and my son got a job today....he just graduated, he's only 17, it is his first job ever...at Denny's (restaurant)
Robyn-G (Jun 18, 2008 8:48:01 PM)
wonder if Buddy got bumped?
Robyn-G (Jun 18, 2008 8:48:27 PM)
what are you doing to stay busy?
Buddy (Jun 18, 2008 8:49:00 PM)
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Robyn-G (Jun 18, 2008 8:49:08 PM)
Hi Buddy
PaRay (Jun 18, 2008 8:49:31 PM)
Just keep up with the things that I am behind on.
PaRay (Jun 18, 2008 8:49:38 PM)
Hi Buddy
Buddy (Jun 18, 2008 8:49:43 PM)
Hi Robyn and PaRay
Robyn-G (Jun 18, 2008 8:49:47 PM)
i see corey just signed on to IM, so he should be on here soon too
Buddy (Jun 18, 2008 8:52:18 PM)
Anybody watch America's Got Talent
Robyn-G (Jun 18, 2008 8:52:31 PM)
not me, i don't watch much though
Buddy (Jun 18, 2008 8:52:55 PM)
It was really good
PaRay (Jun 18, 2008 8:52:59 PM)
I don't. I don't watch much TV either.
Ace_Clarke (Jun 18, 2008 8:53:37 PM)
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PaRay (Jun 18, 2008 8:53:43 PM)
Rovyn... How is Joe doing?
Robyn-G (Jun 18, 2008 8:53:55 PM)
how as in which way?
bette (Jun 18, 2008 8:54:21 PM)
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Buddy (Jun 18, 2008 8:54:39 PM)
Hi bette
vdoman (Jun 18, 2008 8:54:43 PM)
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PaRay (Jun 18, 2008 8:54:51 PM)
Hey Bette,
Robyn-G (Jun 18, 2008 8:54:52 PM)
Hi Bette and Corey
Ace_Clarke (Jun 18, 2008 8:54:57 PM)
Ace is in! Let the Games begin! ;)
Buddy (Jun 18, 2008 8:55:00 PM)
Hi Vdoman
PaRay (Jun 18, 2008 8:55:13 PM)
Hi Ace.
Robyn-G (Jun 18, 2008 8:55:14 PM)
what are we playin, Ace?
vdoman (Jun 18, 2008 8:55:21 PM)
Hi Gang
bette (Jun 18, 2008 8:55:22 PM)
Hi All. How is everyone?
vdoman (Jun 18, 2008 8:55:58 PM)
Hi Bette enjoyed dinner with you guys on Monday
Wendy2 (Jun 18, 2008 8:56:08 PM)
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Ace_Clarke (Jun 18, 2008 8:56:10 PM)
Vdoman? I heard ypu can tell me how to post a photo,true?
Robyn-G (Jun 18, 2008 8:56:24 PM)
Hi Wendy
Buddy (Jun 18, 2008 8:56:28 PM)
Hi Wendy2
bette (Jun 18, 2008 8:56:30 PM)
Yes vdo, it was really great. Enjoyed having your Mom with us as well.
bette (Jun 18, 2008 8:56:36 PM)
Hi Wendy
vdoman (Jun 18, 2008 8:57:05 PM)
Yes email me the picture at gvdoman@yahoo.com
bette (Jun 18, 2008 8:57:09 PM)
Vdo, I havn't forgotten to download the wedding pic. just haven't gotten around to it.
Wendy2 (Jun 18, 2008 8:57:17 PM)
Hi everyone
vdoman (Jun 18, 2008 8:57:44 PM)
I will post it to our scrapbook
Wendy2 (Jun 18, 2008 8:58:54 PM)
My friend had a baby today. I got to be in the birthing room with her. Her daughter and husband were also in the room it wes a learning experience
Wendy2 (Jun 18, 2008 8:59:11 PM)
It is a little boy. Aidyn
Ace_Clarke (Jun 18, 2008 8:59:37 PM)
How can I access scrapbook?
Robyn-G (Jun 18, 2008 8:59:44 PM)
that's cool, wendy...Aidyn is a pretty popular name right now
Wendy2 (Jun 18, 2008 9:00:46 PM)
I had a bus driver who drove me home on a lift bus. even with a GPS he still got lost taking me home. I finally had to give him directions
vdoman (Jun 18, 2008 9:01:00 PM)
Ace send me your email and I will send you an invitation to the scrapbook
Robyn-G (Jun 18, 2008 9:01:09 PM)
Wendy are you using a chair?
Ace_Clarke (Jun 18, 2008 9:01:35 PM)
I'll send it with the pic, K?
Wendy2 (Jun 18, 2008 9:01:40 PM)
No, but i can't get up the normal city bus steps. I use a cane
Robyn-G (Jun 18, 2008 9:01:49 PM)
ok, that makes sense
Robyn-G (Jun 18, 2008 9:02:38 PM)
you guys are quiet tonight
Wendy2 (Jun 18, 2008 9:02:59 PM)
My Mom made reservations for the rooms at the Marriott last week
Ace_Clarke (Jun 18, 2008 9:03:00 PM)
Buddy-What's Cookin Good Lookin? ;)
Robyn-G (Jun 18, 2008 9:03:09 PM)
you guys should go to www.certainvictory.com and you can see one of the masters I am working with in martial arts
Robyn-G (Jun 18, 2008 9:03:32 PM)
He is awesome! He is blind, completely blind and he teaches martial arts and runs a food service business
Wendy2 (Jun 18, 2008 9:03:37 PM)
Any body know how Marcia is doing?
vdoman (Jun 18, 2008 9:04:29 PM)
Kev was just approved for Handy ride Now if I just get him to use it on is own
Robyn-G (Jun 18, 2008 9:04:48 PM)
also, I wrote an essay that was just posted to that website, it's about 2/3 of the way down the page...or the link for it is.
Robyn-G (Jun 18, 2008 9:04:58 PM)
ya, corey, that would be great
bette (Jun 18, 2008 9:05:01 PM)
Marcia is hanging in there. She joined Corey, Kevin Corey's Mom, Mark and I for dinner Monday.
vdoman (Jun 18, 2008 9:05:27 PM)
Marcia is doing as wll as can be expected
Robyn-G (Jun 18, 2008 9:05:36 PM)
oh, that's good that she made it to dinner with you guys....
Robyn-G (Jun 18, 2008 9:05:53 PM)
Bette - how is Mark?
Wendy2 (Jun 18, 2008 9:05:55 PM)
Vdoman you here the horror stories of buses but the good out weighs the bad
bette (Jun 18, 2008 9:06:49 PM)
Mark is doing fine. We finally got our digital converter on properly (I think) so he is a happy camper.
Ace_Clarke (Jun 18, 2008 9:06:55 PM)
Budd? Cat got your tougue?
Wendy2 (Jun 18, 2008 9:07:36 PM)
I got pictures back from when i went to the meeting in CA. There is a cute one of Alice and Marcia
bette (Jun 18, 2008 9:07:46 PM)
We spent the afternoon watching a DVD of Lawrence of Arabia. Tonight we finish ti.
bette (Jun 18, 2008 9:08:14 PM)
Wendy can you e-mail them?
vdoman (Jun 18, 2008 9:08:15 PM)
Handyride is door to door service so their i not much confusion for Kev
Wendy2 (Jun 18, 2008 9:08:26 PM)
I can try
bette (Jun 18, 2008 9:08:51 PM)
The only probem with Kevin is if they show up late or don't show at all.
Wendy2 (Jun 18, 2008 9:08:55 PM)
I will send copies to Diane Bade soon
bette (Jun 18, 2008 9:09:11 PM)
Wendhy, do you have my e-mail?
vdoman (Jun 18, 2008 9:09:21 PM)
Yes that is true
Robyn-G (Jun 18, 2008 9:09:24 PM)
anyone here from Suzette recently? Or Steve?
Robyn-G (Jun 18, 2008 9:09:41 PM)
hear
Wendy2 (Jun 18, 2008 9:09:43 PM)
I don't think i do
vdoman (Jun 18, 2008 9:09:45 PM)
no
Ace_Clarke (Jun 18, 2008 9:10:00 PM)
Guess Buddy's not talking. :(
Robyn-G (Jun 18, 2008 9:10:13 PM)
Ace - you're good with the faces
Robyn-G (Jun 18, 2008 9:10:27 PM)
lookin a little blue though.......
Ace_Clarke (Jun 18, 2008 9:10:45 PM)
::blushes:: It's a Gift
Ace_Clarke (Jun 18, 2008 9:11:09 PM)
:) :( ;) ;(
Robyn-G (Jun 18, 2008 9:11:17 PM)
nice!!!
Robyn-G (Jun 18, 2008 9:11:21 PM)
what's the trick?
vdoman (Jun 18, 2008 9:11:48 PM)
Wendy your mom should have waited to make a reservation ayt Marriott because their dscount for a block of rooms at the conference
Robyn-G (Jun 18, 2008 9:12:01 PM)
oh...Joe's sister on his mom's side got DNA tested....both alleles were real low numbers, like 11 and 12
Ace_Clarke (Jun 18, 2008 9:12:21 PM)
Classified. I could tell you but then I'd Have to kill you. ;)
Robyn-G (Jun 18, 2008 9:12:40 PM)
a'right....in that case...
Robyn-G (Jun 18, 2008 9:12:44 PM)
: )
vdoman (Jun 18, 2008 9:12:52 PM)
sounds like
Ace_Clarke (Jun 18, 2008 9:13:20 PM)
Trick. Try this type Colon the Shift & 0
vdoman (Jun 18, 2008 9:13:40 PM)
Joes sis i the 50% that did not get the bad gene
Robyn-G (Jun 18, 2008 9:13:41 PM)
Suzette is going to try to get on tonight, just had her computer rebuilt...got damaged during the lightening storm
bette (Jun 18, 2008 9:13:45 PM)
Wendy, did you get my private message.
Wendy2 (Jun 18, 2008 9:13:58 PM)
One of our member's of our MDA and MMd group is moving to Utah. Wr are trying to get her in touch with Anne Woodbury. I think she runs a MMD over there
Robyn-G (Jun 18, 2008 9:14:00 PM)
well, it's also his half sister, corey, so if it came from his dad....then she wouldn't have got it anyway
Robyn-G (Jun 18, 2008 9:14:16 PM)
:O
Ace_Clarke (Jun 18, 2008 9:14:16 PM)
":" +")"= :)
Ace_Clarke (Jun 18, 2008 9:14:51 PM)
How did you get that mouth?
Wendy2 (Jun 18, 2008 9:14:53 PM)
Yeah bette I got it my IM is not working
Robyn-G (Jun 18, 2008 9:15:00 PM)
:)
Ace_Clarke (Jun 18, 2008 9:15:18 PM)
:0
Robyn-G (Jun 18, 2008 9:15:23 PM)
::
Robyn-G (Jun 18, 2008 9:15:31 PM)
thanks Ace, that is entertaining
Robyn-G (Jun 18, 2008 9:15:42 PM)
i was trying to make it wink, didn't quite make it though
Robyn-G (Jun 18, 2008 9:16:05 PM)
;)
Ace_Clarke (Jun 18, 2008 9:16:09 PM)
semicolon for that ;)
Robyn-G (Jun 18, 2008 9:16:10 PM)
got it!
Wendy2 (Jun 18, 2008 9:16:28 PM)
I know my Mom made plane reservations. I thought she said rooms too. Maybe she said she was going to do roomds soon
Robyn-G (Jun 18, 2008 9:16:32 PM)
:(
Ace_Clarke (Jun 18, 2008 9:16:50 PM)
Aww Robyn.
Wendy2 (Jun 18, 2008 9:17:01 PM)
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Wendy2 (Jun 18, 2008 9:17:11 PM)
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Robyn-G (Jun 18, 2008 9:17:20 PM)
welcome back wendy
vdoman (Jun 18, 2008 9:17:31 PM)
Wb Wendy
Wendy2 (Jun 18, 2008 9:17:50 PM)
Hi
Ace_Clarke (Jun 18, 2008 9:17:58 PM)
::nails Wendy Shoes to chat Floor::
Wendy2 (Jun 18, 2008 9:19:27 PM)
:)
Wendy2 (Jun 18, 2008 9:19:36 PM)
see I can too
Robyn-G (Jun 18, 2008 9:19:40 PM)
yes you can!
Wendy2 (Jun 18, 2008 9:20:00 PM)
HI payray
vdoman (Jun 18, 2008 9:20:16 PM)
Ray you are so quiet. Are still with us or ae you chasing a Amish woman arond th house LOL!
Wendy2 (Jun 18, 2008 9:20:21 PM)
Oops Paray
Ace_Clarke (Jun 18, 2008 9:20:32 PM)
I let the trick out..Now everybody knows. :(
bette (Jun 18, 2008 9:20:39 PM)
Wendy, I don't think I have IM
Wendy2 (Jun 18, 2008 9:21:22 PM)
Well however it happened I got it
vdoman (Jun 18, 2008 9:21:29 PM)
You have to enable IM from your settins menu
Wendy2 (Jun 18, 2008 9:21:45 PM)
Its all good
Wendy2 (Jun 18, 2008 9:22:15 PM)
How was everybody's Father's Day
bette (Jun 18, 2008 9:22:19 PM)
I just clicked on your name twice, that brought up a box and I texed the message then sent it.
Ace_Clarke (Jun 18, 2008 9:22:32 PM)
Not too good.
Wendy2 (Jun 18, 2008 9:22:39 PM)
Is that how you do it. Thanks
Buddy (Jun 18, 2008 9:23:03 PM)
My dad's gone
Wendy2 (Jun 18, 2008 9:23:16 PM)
I don't like that answer Ace
Ace_Clarke (Jun 18, 2008 9:23:21 PM)
Buudy speaks! :0
shelly (Jun 18, 2008 9:23:34 PM)
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shelly (Jun 18, 2008 9:23:38 PM)
hi there
bette (Jun 18, 2008 9:23:41 PM)
Since Mark is not a father we did not officially celebrate but we went to a play that my neighbor did the music for. It was really cute called Play it Again Harry.
Wendy2 (Jun 18, 2008 9:23:45 PM)
HI shelley
vdoman (Jun 18, 2008 9:23:47 PM)
Hi Shelly
Buddy (Jun 18, 2008 9:23:50 PM)
Hi Shelly
shelly (Jun 18, 2008 9:24:02 PM)
hello fiiends
Wendy2 (Jun 18, 2008 9:24:15 PM)
Sound cute bette
Robyn-G (Jun 18, 2008 9:24:18 PM)
Hi Shelly
shelly (Jun 18, 2008 9:24:24 PM)
Ace- you gonna buy those shoes for me or what?
Ace_Clarke (Jun 18, 2008 9:24:31 PM)
Both grandfathers, Step grandfather.Father, stepfather & godfather all deseaced.
shelly (Jun 18, 2008 9:24:33 PM)
How are the girls Robyn?
Robyn-G (Jun 18, 2008 9:24:55 PM)
They're ok
shelly (Jun 18, 2008 9:24:58 PM)
good
Robyn-G (Jun 18, 2008 9:25:12 PM)
last day of school is tomorrow, but they have dental appts. so today was their last day
shelly (Jun 18, 2008 9:25:12 PM)
Are we talking about denial tonight?
Ace_Clarke (Jun 18, 2008 9:25:21 PM)
Shoes?
bette (Jun 18, 2008 9:25:22 PM)
What are the girls and Joe up to now aday's
Robyn-G (Jun 18, 2008 9:25:41 PM)
you're right shelly, that' s what the email said, but i think we all forgot
Wendy2 (Jun 18, 2008 9:25:58 PM)
School was over last wwk for OR students
bette (Jun 18, 2008 9:25:58 PM)
I went to the dentist yesterday.
Robyn-G (Jun 18, 2008 9:26:05 PM)
Joe does some things with a friend of his, goes to jobsites with him. He does better the busier he stays.
shelly (Jun 18, 2008 9:26:30 PM)
I've got a brother and a sister both in denial and my brother has a son who I know has it and he's not doing any thing about it! Like going to the doc to get an idea of what's going on.
Robyn-G (Jun 18, 2008 9:26:41 PM)
my oldest daughter is getting married in August...so it's getting close...
Wendy2 (Jun 18, 2008 9:26:53 PM)
Denial, my father
Robyn-G (Jun 18, 2008 9:27:01 PM)
ya, Shelly, Joe's family didnt' ever want to hear or talk about it...
Robyn-G (Jun 18, 2008 9:27:06 PM)
now some of them are beginning too
Robyn-G (Jun 18, 2008 9:27:09 PM)
to
shelly (Jun 18, 2008 9:27:11 PM)
I forwarded the chat reminder about denial to my Mom -she needs to tell him to get his butt in hear
bette (Jun 18, 2008 9:27:18 PM)
Robyn, congratulations. It must be an exciting time.
Ace_Clarke (Jun 18, 2008 9:27:26 PM)
My family accepted it fine. We all adapt.
Robyn-G (Jun 18, 2008 9:27:39 PM)
like he was on a jobsite with his dad a week or so ago just watching and was going to try to help with something but his dad told him he better not....finally
Robyn-G (Jun 18, 2008 9:27:59 PM)
it is Bette....it's weird....I've got two out of high school now.
Wendy2 (Jun 18, 2008 9:27:59 PM)
MY sister, Mom,and i adapted but...
Robyn-G (Jun 18, 2008 9:28:21 PM)
Janelle will be a junior next year....and Alex and Jessica will both be in 8th grade
Buddy (Jun 18, 2008 9:28:28 PM)
Best Wishes Robyn
shelly (Jun 18, 2008 9:28:33 PM)
I've adapted and done everything I'm supposed to do. Any little thing I complain about to my Mom- she says, "you better get that checked out." But to my brother she says only "he's an adult" Like I'm not?
Wendy2 (Jun 18, 2008 9:28:55 PM)
For him i think it is misplaced guilt because he passed it on
Ace_Clarke (Jun 18, 2008 9:29:00 PM)
I can still stand, walk & drive. Knock on wood.
shelly (Jun 18, 2008 9:29:13 PM)
I thinl he has a problem with priorities
Robyn-G (Jun 18, 2008 9:29:15 PM)
so, can Joe, Ace
shelly (Jun 18, 2008 9:29:23 PM)
me too
Robyn-G (Jun 18, 2008 9:29:24 PM)
Thanks Buddy
shelly (Jun 18, 2008 9:29:47 PM)
I walk all over the place -my Afo's really support my legs
bette (Jun 18, 2008 9:30:00 PM)
Perhaps with the girls home and the wedding coming up Joe can get more invovled with them.
Wendy2 (Jun 18, 2008 9:30:08 PM)
I still work part time
Robyn-G (Jun 18, 2008 9:30:14 PM)
ya, I'm definitely encouraging that Bette
Buddy (Jun 18, 2008 9:30:22 PM)
Shelly what are Afo
shelly (Jun 18, 2008 9:30:40 PM)
My Dad looks terrible-he's had to get AED dne a few times
vdoman (Jun 18, 2008 9:30:48 PM)
Keep Joe Busy Robyn
Buddy (Jun 18, 2008 9:30:50 PM)
Shelly what are Afo's?
shelly (Jun 18, 2008 9:30:54 PM)
Buddy- Ankle foot orthotics
bette (Jun 18, 2008 9:30:55 PM)
What is AFD
Wendy2 (Jun 18, 2008 9:30:55 PM)
I went doen from 5 hours a day to 4 though
shelly (Jun 18, 2008 9:31:14 PM)
My Dad needs a pacemaker
Wendy2 (Jun 18, 2008 9:31:16 PM)
at work
suziern (Jun 18, 2008 9:31:24 PM)
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Ace_Clarke (Jun 18, 2008 9:31:31 PM)
Doc at MDA Clinic said it's progressing slowly. Also is amazed at my positive outlook. He say's most of his patients are negative.
shelly (Jun 18, 2008 9:31:32 PM)
hi suzie
vdoman (Jun 18, 2008 9:31:33 PM)
H suzette
suziern (Jun 18, 2008 9:31:37 PM)
Hey everybody!
Buddy (Jun 18, 2008 9:31:40 PM)
Shelly what do thaey do?
bette (Jun 18, 2008 9:31:56 PM)
Shelly, what does AED stand for?
Wendy2 (Jun 18, 2008 9:32:04 PM)
Oh sheely i have one. One and then one replaced when the old one wore out
vdoman (Jun 18, 2008 9:32:06 PM)
How is billy Dean
shelly (Jun 18, 2008 9:32:14 PM)
I try to stay positive ACE- been 10 yrs since diagnosed
Wendy2 (Jun 18, 2008 9:32:26 PM)
Hi sus
suziern (Jun 18, 2008 9:32:30 PM)
He is stable, he just got back from MDA camp, he had a blast, as usual, this was his best year yet
Ace_Clarke (Jun 18, 2008 9:32:31 PM)
Buddy-You pissed at me. :(
shelly (Jun 18, 2008 9:32:34 PM)
only one Wendy?
bette (Jun 18, 2008 9:32:39 PM)
Ace, he should send his patients to us.
Robyn-G (Jun 18, 2008 9:32:43 PM)
yes, Corey, that's the plan
Wendy2 (Jun 18, 2008 9:32:53 PM)
ha ha
suziern (Jun 18, 2008 9:33:15 PM)
How is Kevin, did he move out Corey? or is he still with you
Wendy2 (Jun 18, 2008 9:33:18 PM)
MDA camp this early?
bette (Jun 18, 2008 9:33:23 PM)
Hi Suzette
shelly (Jun 18, 2008 9:33:28 PM)
I broke one- and had to upgrade to the super durable ones
Robyn-G (Jun 18, 2008 9:33:34 PM)
mda camps differ from state to state
suziern (Jun 18, 2008 9:33:35 PM)
Hey Bette
suziern (Jun 18, 2008 9:33:35 PM)
Yes, last week
Ace_Clarke (Jun 18, 2008 9:33:39 PM)
Acyually it's neuromuscular clinic. ALS & ect, Not just MDA.
shelly (Jun 18, 2008 9:33:39 PM)
A bit stiff, but good walking
Robyn-G (Jun 18, 2008 9:33:43 PM)
suzette, how are you?
suziern (Jun 18, 2008 9:34:09 PM)
I am doing okay, much better than I have been actually
suziern (Jun 18, 2008 9:34:24 PM)
When BillyDean is good, then I am good pretty much
shelly (Jun 18, 2008 9:34:32 PM)
The MDA camp here is on the beach- when I was stronger I offered to be a counselor and they said no
suziern (Jun 18, 2008 9:34:47 PM)
and he is so excited just coming back from camp, it is the main event of his life every year, he loves it so much
bette (Jun 18, 2008 9:34:48 PM)
How did BillyDean enjoy camp?
vdoman (Jun 18, 2008 9:34:49 PM)
Kev is still with me, I just want him to be able to go somewhere when I want to get away without him
Robyn-G (Jun 18, 2008 9:34:53 PM)
but, how is Suzette? healthwise?
shelly (Jun 18, 2008 9:35:04 PM)
I work with childrne with disabilities have to lift and change ,etc. . .but they said no
Robyn-G (Jun 18, 2008 9:35:20 PM)
ya, Suzette, same with the girls..they love camp, though it is now only going to go through age 17 instead of 21
Ace_Clarke (Jun 18, 2008 9:35:20 PM)
MDA won't take couselor's with MD?
shelly (Jun 18, 2008 9:35:28 PM)
nop
shelly (Jun 18, 2008 9:35:29 PM)
e
bette (Jun 18, 2008 9:35:46 PM)
That seems exclusionary.
suziern (Jun 18, 2008 9:35:51 PM)
I am doing pretty well Robyn, I am much happier and way more content now
shelly (Jun 18, 2008 9:36:08 PM)
I was not happy-here I want to give something back and maybethey thought I was a liability or something- this is when I was asymptomatic
Ace_Clarke (Jun 18, 2008 9:36:10 PM)
Yeah a bit
Robyn-G (Jun 18, 2008 9:36:13 PM)
great to hear. you still in Indiana suz?
Wendy2 (Jun 18, 2008 9:36:25 PM)
My friend Star has MMD. She was a conselor but it took her three years to wear them down. To where they said yes
suziern (Jun 18, 2008 9:36:25 PM)
Yes, for now
suziern (Jun 18, 2008 9:36:36 PM)
My divorce got continued, again
shelly (Jun 18, 2008 9:36:41 PM)
I can't do it now
shelly (Jun 18, 2008 9:36:48 PM)
not as strong as I used to be
Robyn-G (Jun 18, 2008 9:37:04 PM)
shelly, you were diagnosed 10years ago? how old?
suziern (Jun 18, 2008 9:37:05 PM)
should be over on August 14th for sure this time
shelly (Jun 18, 2008 9:37:06 PM)
still strong but don't want to become a liability
shelly (Jun 18, 2008 9:37:14 PM)
I was 25
Robyn-G (Jun 18, 2008 9:37:33 PM)
ok, so we're the same age
shelly (Jun 18, 2008 9:37:40 PM)
Remember you told me one of your girls repeats were close to mine?
suziern (Jun 18, 2008 9:37:42 PM)
I just turned 41
Robyn-G (Jun 18, 2008 9:37:47 PM)
did i tell you when we got the girls IQ scores back?
Wendy2 (Jun 18, 2008 9:37:48 PM)
your close to my age
Wendy2 (Jun 18, 2008 9:37:52 PM)
33
bette (Jun 18, 2008 9:37:54 PM)
Carey, have you heard from Lisa lately?
shelly (Jun 18, 2008 9:37:55 PM)
no
Ace_Clarke (Jun 18, 2008 9:37:55 PM)
All the voulenteers say it rewarding. If a MD adult is able I see no problem
suziern (Jun 18, 2008 9:38:02 PM)
and my oldest daughter turned 23 right after that so we took each other out to lunch, haha
shelly (Jun 18, 2008 9:38:02 PM)
what did you find out?
shelly (Jun 18, 2008 9:38:07 PM)
IQ
Robyn-G (Jun 18, 2008 9:38:10 PM)
yes, Shelly, Janelle in the 400's, like 472, and Jessica like 612
vdoman (Jun 18, 2008 9:38:17 PM)
My wife wasnot diagnosised until she was 35
shelly (Jun 18, 2008 9:38:18 PM)
I'm 537
Robyn-G (Jun 18, 2008 9:38:26 PM)
Janelle = 68, Jessica = 55
suziern (Jun 18, 2008 9:38:32 PM)
BillyDean is 681 range
Wendy2 (Jun 18, 2008 9:38:37 PM)
Diagnosed at 16
Robyn-G (Jun 18, 2008 9:38:40 PM)
so, you're right in between them, but obviously no cognitive impairment like them
suziern (Jun 18, 2008 9:38:47 PM)
brb
shelly (Jun 18, 2008 9:38:48 PM)
Janelle is close to the cutoff
Robyn-G (Jun 18, 2008 9:38:53 PM)
yes she is
Robyn-G (Jun 18, 2008 9:39:02 PM)
isn't it like 70? or 65?
Buddy (Jun 18, 2008 9:39:08 PM)
Dianoged at 17
bette (Jun 18, 2008 9:39:25 PM)
Diagnosed at 18
Robyn-G (Jun 18, 2008 9:39:28 PM)
can't imagine getting a diagnosis as a teenager....my heart goes out to you guys....
Robyn-G (Jun 18, 2008 9:39:35 PM)
you're a lot tougher than i am
shelly (Jun 18, 2008 9:39:39 PM)
I think no cognitive impairment but I took a battery of tests recently and it said mild cognitive impairment- I cried and cried
Robyn-G (Jun 18, 2008 9:39:51 PM)
oh, I bet, Shelly
shelly (Jun 18, 2008 9:39:56 PM)
I was pisses
shelly (Jun 18, 2008 9:40:00 PM)
pissed
Robyn-G (Jun 18, 2008 9:40:08 PM)
I think that in some people their is a cognitive impairment progression
bette (Jun 18, 2008 9:40:10 PM)
The disease did not really affect me until I was older.
Robyn-G (Jun 18, 2008 9:40:21 PM)
there, not their
Wendy2 (Jun 18, 2008 9:40:22 PM)
I wish i knew sooner. I was called everything iunder the sun not to mention Lazy
shelly (Jun 18, 2008 9:40:23 PM)
I have a high IQ
Ace_Clarke (Jun 18, 2008 9:40:29 PM)
I was very young when fist symptoms started, jaw only.
Robyn-G (Jun 18, 2008 9:40:30 PM)
bet that's true too Wendy
Buddy (Jun 18, 2008 9:40:32 PM)
MMD STINKS
Robyn-G (Jun 18, 2008 9:40:40 PM)
yes it does....
vdoman (Jun 18, 2008 9:40:48 PM)
MMD Sucks
shelly (Jun 18, 2008 9:40:50 PM)
I wish I knew sooner- It was with held from my bro and I until I was 25
bette (Jun 18, 2008 9:40:51 PM)
I am noticing cognitive impairment as I get older.
Robyn-G (Jun 18, 2008 9:41:11 PM)
wow Shelly...
Ace_Clarke (Jun 18, 2008 9:41:15 PM)
However if you have to have MD, MMD is the on to have.
shelly (Jun 18, 2008 9:41:22 PM)
Does mmd affect the brain?
Robyn-G (Jun 18, 2008 9:41:26 PM)
we've discussed that on here before....
Robyn-G (Jun 18, 2008 9:41:30 PM)
about to tell or not to tell
Wendy2 (Jun 18, 2008 9:41:35 PM)
I was always tried but the muscles in my legs didn't go till early 20's
Robyn-G (Jun 18, 2008 9:41:43 PM)
Yes, shelly it does. I have read articles and the last conference covered some info. on that
bette (Jun 18, 2008 9:42:10 PM)
I was lucky, my Mom had it so there was no question that that was what I had. Mom was in denile about me though
suziern (Jun 18, 2008 9:42:10 PM)
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Ace_Clarke (Jun 18, 2008 9:42:13 PM)
Not always.
Robyn-G (Jun 18, 2008 9:42:18 PM)
there appears to be white lesions on the brain, like a focal dementia in some patients...I know it's hard to hear but remember like all other areas, it affects each person differently
Robyn-G (Jun 18, 2008 9:42:24 PM)
and I don't agree that "it's the one to have"
shelly (Jun 18, 2008 9:42:25 PM)
I needed to know- I was sexually active and what if I got pregnant-I will never forgive my Dad for not telling us
Buddy (Jun 18, 2008 9:42:26 PM)
Yes Robyn I've read that too
Robyn-G (Jun 18, 2008 9:42:44 PM)
That's exactly what I was thinking, Shelly. A person has a right to know for that reason
shelly (Jun 18, 2008 9:42:44 PM)
that's true Robyn- I'm still intelligent
Robyn-G (Jun 18, 2008 9:42:50 PM)
yes you are!
vdoman (Jun 18, 2008 9:42:52 PM)
I lost my wife to this sh-tty disease and we need to find a cure so I do not hae to bury my son also
Ace_Clarke (Jun 18, 2008 9:42:53 PM)
IQ-130
Robyn-G (Jun 18, 2008 9:43:02 PM)
WOW!!! Ace
shelly (Jun 18, 2008 9:43:13 PM)
Ace-one point above ya
Ace_Clarke (Jun 18, 2008 9:43:55 PM)
I think if your dad had it it doesn' t affect the brain.
Robyn-G (Jun 18, 2008 9:43:58 PM)
Never had my IQ tested....think I won't...
Wendy2 (Jun 18, 2008 9:44:11 PM)
IQ not sure
Buddy (Jun 18, 2008 9:44:14 PM)
I'd rather be a bitch than have MMD
Robyn-G (Jun 18, 2008 9:44:19 PM)
Not true Ace, the girls got it from Joe obviously and they are affected
shelly (Jun 18, 2008 9:44:28 PM)
I know it spans 50-60 yrs- I mean I'm glass I don't have one of the more progressive MDs
shelly (Jun 18, 2008 9:44:39 PM)
I'd rather be a bitch too
shelly (Jun 18, 2008 9:44:42 PM)
LOL
shelly (Jun 18, 2008 9:44:55 PM)
some days I denounce that I do not have MD
bette (Jun 18, 2008 9:45:04 PM)
I agree with Robyn. I know my IQ is high enough to get through college and I have a high common sense level.
shelly (Jun 18, 2008 9:45:05 PM)
coping mechanism
Ace_Clarke (Jun 18, 2008 9:45:14 PM)
My aunt had it. Her sons (My cousins) are both mentally retarded.
Robyn-G (Jun 18, 2008 9:45:20 PM)
Yes Bette - you are highly intelligent
Wendy2 (Jun 18, 2008 9:45:33 PM)
I got it from my Dad. You will NEVER see him at the confernce
Robyn-G (Jun 18, 2008 9:45:39 PM)
Ace, our girls are considered Mildly mentally retarded and they got it from Joe
shelly (Jun 18, 2008 9:46:02 PM)
Robyn- pls remember it's just a number
vdoman (Jun 18, 2008 9:46:12 PM)
Your girls are like Kev Robyn
shelly (Jun 18, 2008 9:46:21 PM)
they have to give IQ tests to classify these kids
Wendy2 (Jun 18, 2008 9:46:33 PM)
Shelly my sister is like that some times. She has MMd when it is convient or benifits her
Buddy (Jun 18, 2008 9:46:36 PM)
I got it from mom She didn't know she had it when I was born
shelly (Jun 18, 2008 9:46:51 PM)
what you do at home to help them learn to be as independent as possible is what matters most
bette (Jun 18, 2008 9:47:11 PM)
Same way with my mom Buddy. I was also a late in life baby and came out a month early.
shelly (Jun 18, 2008 9:47:21 PM)
I have it with no strings attached I don't use it to my advantage
Ace_Clarke (Jun 18, 2008 9:47:28 PM)
Dad didn't know he could pass it on or that it get's worse with each generation.
Robyn-G (Jun 18, 2008 9:47:45 PM)
Yes Shelly, I know it's just a number. In some ways, Jessica is so quick....she picks up on some things that people don't expect her to
Wendy2 (Jun 18, 2008 9:47:46 PM)
Dad didn't know he had it
vdoman (Jun 18, 2008 9:47:59 PM)
Got to say goodbye time to leave for Kevs Keyboar lesson
shelly (Jun 18, 2008 9:48:12 PM)
night! Take it easy. . .
bette (Jun 18, 2008 9:48:12 PM)
Some times I use it to my advantage, especially when I'm b eing lazy and ask Mark to do things.
Wendy2 (Jun 18, 2008 9:48:14 PM)
Bye Vdo
Robyn-G (Jun 18, 2008 9:48:19 PM)
At home, I have just worked with them to be responsible for their own hygiene, to set the table, put away dishes, Jess helps with dinner, etc.
Robyn-G (Jun 18, 2008 9:48:32 PM)
I give them their bathroom to clean about once a week
vdoman (Jun 18, 2008 9:48:41 PM)
Bye all have a grea dday
Robyn-G (Jun 18, 2008 9:48:50 PM)
Bye Corey
shelly (Jun 18, 2008 9:48:59 PM)
that's the type of stuff I work on in my job- If it's carried over at home- that's great
vdoman (Jun 18, 2008 9:49:04 PM)
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bette (Jun 18, 2008 9:49:25 PM)
Shelly, if you don't mind my asking what do you do?
Ace_Clarke (Jun 18, 2008 9:49:28 PM)
Gas? Full serve is 18 cents more. I can't pump. Shouldn't be penalized.
shelly (Jun 18, 2008 9:49:54 PM)
I teach Special Education from Moderate to severe impairments
bette (Jun 18, 2008 9:49:58 PM)
Ace, in CA. gas stations cannot penalize you.
Wendy2 (Jun 18, 2008 9:50:01 PM)
Our neighbor has cancer he just come ou to get the mail. I'd rather have MMD than cancer
bette (Jun 18, 2008 9:50:12 PM)
Wow Shelly, that is awesome
shelly (Jun 18, 2008 9:50:18 PM)
I love it
Ace_Clarke (Jun 18, 2008 9:50:52 PM)
If NY they do. Not NJ, you can't get self serve there.
Wendy2 (Jun 18, 2008 9:50:58 PM)
They pump for you in OR. It is the law
shelly (Jun 18, 2008 9:51:00 PM)
God has "called" me to do this work- never knew when I strted I'd end up with a moblity impairment
Buddy (Jun 18, 2008 9:51:01 PM)
I'd rather be normal and have nothing
bette (Jun 18, 2008 9:51:23 PM)
I always wanted to be a teacher but in college they would not let me due to my speech. I didn't know enough to fight for what I wanted then.
shelly (Jun 18, 2008 9:51:25 PM)
sorry- bad spelling for a teacher
shelly (Jun 18, 2008 9:51:44 PM)
what is wrong with your speech if I may ask?
Ace_Clarke (Jun 18, 2008 9:51:56 PM)
Gotta count your blessings.
Wendy2 (Jun 18, 2008 9:51:59 PM)
I knew what you mean Shelly
Robyn-G (Jun 18, 2008 9:52:31 PM)
Shelly, do you not have any speech issues with this?
bette (Jun 18, 2008 9:52:33 PM)
Buddy, on the face of it I agree with you but I have met so many wonderful people that I would never havae met if I did not have MMD
shelly (Jun 18, 2008 9:52:42 PM)
Ace I got an e-mail like that today and it really putthings in to perspective
Wendy2 (Jun 18, 2008 9:52:49 PM)
Well i'd better go,
Robyn-G (Jun 18, 2008 9:52:49 PM)
wow Bette, what a wonderful attitude
Robyn-G (Jun 18, 2008 9:52:55 PM)
Bye Wendy...
Wendy2 (Jun 18, 2008 9:52:59 PM)
bye everyone
Ace_Clarke (Jun 18, 2008 9:53:08 PM)
Could always be worse.
shelly (Jun 18, 2008 9:53:11 PM)
no no speech issues at all
Wendy2 (Jun 18, 2008 9:53:15 PM)
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shelly (Jun 18, 2008 9:53:23 PM)
why do you ask?
Robyn-G (Jun 18, 2008 9:53:24 PM)
That's great Shelly
Robyn-G (Jun 18, 2008 9:53:33 PM)
Lots of people with MMD have speech difficulty
Robyn-G (Jun 18, 2008 9:53:46 PM)
pardon the analogy but it sounds like a tape recorder on rewind sometimes
Robyn-G (Jun 18, 2008 9:54:00 PM)
as the myotonia affects the tongue, etc...
Robyn-G (Jun 18, 2008 9:54:04 PM)
and muscle weakness
Ace_Clarke (Jun 18, 2008 9:54:08 PM)
Yes
shelly (Jun 18, 2008 9:54:19 PM)
I know my nephew ,Dad, two uncles and others have hypernasal voice- not me or my bro
shelly (Jun 18, 2008 9:54:23 PM)
or my sis
bette (Jun 18, 2008 9:54:34 PM)
Speech was just slurred. I always sounded like I had a bad cold. I was in speech therapy in college and the therapiest said she would have to O.K> me for the educationprogram and she could not. Now my speech is much worse. I can't even volunteer as a literacy tutor.
shelly (Jun 18, 2008 9:54:35 PM)
my bro's tongue locks up
Ace_Clarke (Jun 18, 2008 9:54:38 PM)
Worries be the biggest muscle. The heart,
Robyn-G (Jun 18, 2008 9:54:39 PM)
I can only understand my husband a fraction of the time, the first time around...sometimes takes several attempts
shelly (Jun 18, 2008 9:55:15 PM)
I feel so bad- I can't understand my uncle 50% of the time and I really want to talk to him
Robyn-G (Jun 18, 2008 9:55:18 PM)
but the muscle isn't what causes issues with the heart...it's the conduction, i.e. electrical system
Robyn-G (Jun 18, 2008 9:55:34 PM)
oh, so you do know what it sounds like, then?
Ace_Clarke (Jun 18, 2008 9:55:48 PM)
I see a cardiologist every 3 months.
Robyn-G (Jun 18, 2008 9:55:58 PM)
wow, that's frequent...how is your heart Ace?
shelly (Jun 18, 2008 9:56:22 PM)
absoloutely- my Mom has done voice-overs for training tapes and radio- she has a beautiful voice
Ace_Clarke (Jun 18, 2008 9:56:29 PM)
So far so good. He was dad's doctor till he passed.
shelly (Jun 18, 2008 9:56:44 PM)
Apparently we sound like our Mom (not affected)
shelly (Jun 18, 2008 9:57:15 PM)
My voice isn't as nice as hers, but we soind very much alike
Ace_Clarke (Jun 18, 2008 9:57:26 PM)
Gotta go to watch my home state-CSI:NY.
Robyn-G (Jun 18, 2008 9:57:35 PM)
Bye Ace
shelly (Jun 18, 2008 9:57:40 PM)
bye Ace- don't forget about my shoes
shelly (Jun 18, 2008 9:57:55 PM)
Mephisto -black sandals-$235
Buddy (Jun 18, 2008 9:58:09 PM)
I have a very deep voice don't know if that's from MMD
Robyn-G (Jun 18, 2008 9:58:19 PM)
I wouldn't think so, Buddy...
shelly (Jun 18, 2008 9:58:25 PM)
buddy you're a chick-right?
Ace_Clarke (Jun 18, 2008 9:58:30 PM)
Bye Robyn & Shelly. I have to save up to be poor. Can't afford shoes.
Robyn-G (Jun 18, 2008 9:58:37 PM)
LOL
Buddy (Jun 18, 2008 9:58:39 PM)
Right
Ace_Clarke (Jun 18, 2008 9:58:52 PM)
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shelly (Jun 18, 2008 9:59:07 PM)
is it low like a soul singer
shelly (Jun 18, 2008 9:59:08 PM)
?
Buddy (Jun 18, 2008 9:59:15 PM)
Iget mistaken for a man on the phone
shelly (Jun 18, 2008 9:59:33 PM)
really>
shelly (Jun 18, 2008 9:59:38 PM)
What do you say?
Buddy (Jun 18, 2008 9:59:46 PM)
yup
bette (Jun 18, 2008 10:00:01 PM)
Buddy, Mark's mother always got mistaken the same way.
Buddy (Jun 18, 2008 10:00:11 PM)
I get called Sir
shelly (Jun 18, 2008 10:00:23 PM)
I would be pissed
shelly (Jun 18, 2008 10:00:35 PM)
and mess up the gender of the person on the phone
Buddy (Jun 18, 2008 10:00:48 PM)
I alwaya wanted to be a boy
shelly (Jun 18, 2008 10:00:58 PM)
I am so glad to be a girl
Robyn-G (Jun 18, 2008 10:01:19 PM)
My voice isn't the most feminine sounding, either, Buddy
Buddy (Jun 18, 2008 10:01:51 PM)
my bro doesn't have MMD maybe I wouldn't if I had been a boy
shelly (Jun 18, 2008 10:01:54 PM)
as long as you can be understood- that's important
Robyn-G (Jun 18, 2008 10:02:02 PM)
and I tend to do things like ride motorcycles, do martial arts, just became a personal trainer.....but I am told I'm still feminine...just not girly girly
Robyn-G (Jun 18, 2008 10:02:27 PM)
no, Buddy, it probably wouldn't matter your gender, cause both boys and girls get this disease...
bette (Jun 18, 2008 10:02:39 PM)
Robyn, since I can't see very well, will you tell me what your icon is.
shelly (Jun 18, 2008 10:02:43 PM)
I'm a girly girl, but I can shoot hoops and kickbox still some
Robyn-G (Jun 18, 2008 10:02:52 PM)
It's a nest with three robin eggs in it
bette (Jun 18, 2008 10:03:03 PM)
Oh, how cute.
Robyn-G (Jun 18, 2008 10:03:06 PM)
thanks
Buddy (Jun 18, 2008 10:03:12 PM)
So long gabg
shelly (Jun 18, 2008 10:03:19 PM)
I'll ttylater!
Buddy (Jun 18, 2008 10:03:23 PM)
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shelly (Jun 18, 2008 10:03:37 PM)
tired
shelly (Jun 18, 2008 10:04:00 PM)
we don't deal with sleep issues around her -nah
shelly (Jun 18, 2008 10:04:05 PM)
here
Robyn-G (Jun 18, 2008 10:04:05 PM)
LOL!
Robyn-G (Jun 18, 2008 10:04:16 PM)
just a few of us left
shelly (Jun 18, 2008 10:04:26 PM)
opps I just dozed off
shelly (Jun 18, 2008 10:04:33 PM)
Night!
Robyn-G (Jun 18, 2008 10:04:36 PM)
g'night
shelly (Jun 18, 2008 10:04:44 PM)
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Robyn-G (Jun 18, 2008 10:04:57 PM)
just the three of us left....
Robyn-G (Jun 18, 2008 10:05:17 PM)
Hey Bette, did you say you do or don't do books on audio?
bette (Jun 18, 2008 10:06:35 PM)
I do Robyn. I also still try to read since Mark keeps passing along books that he really likes. If the print is dark enough I can read just not as long as I used to.
Robyn-G (Jun 18, 2008 10:07:10 PM)
oh, ok... I was going to tell you that one of the Masters I train with has a really good book that just came out on audio...It's called Certain Victory
Robyn-G (Jun 18, 2008 10:07:16 PM)
HIs website is www.certainvictory.com
Robyn-G (Jun 18, 2008 10:07:48 PM)
not sure if you were on in the beginning of the chat when i talked about him...he is blind. He is incredible and the book was very good...really impacted me
bette (Jun 18, 2008 10:08:35 PM)
I was not on at the time. Thanks for the info.l
bette (Jun 18, 2008 10:09:33 PM)
I'm going to say good nite and see if I can stay up for the rest of Lawrence of Arabia.
Robyn-G (Jun 18, 2008 10:09:33 PM)
you're welcome
Robyn-G (Jun 18, 2008 10:09:36 PM)
goodnight you too
Robyn-G (Jun 18, 2008 10:09:40 PM)
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bette (Jun 18, 2008 10:09:46 PM)
Nite Ray
bette (Jun 18, 2008 10:09:52 PM)
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PaRay (Jun 18, 2008 10:22:52 PM)
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