Myotonic Chat Group
PaRay (May 16, 2007 7:46:25 PM)
Robyn-G (May 16, 2007 7:48:07 PM)
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Robyn-G (May 16, 2007 7:48:37 PM)
Hi Ray, I'm multi-tasking, doing dinner, so i'll be back and forth
PaRay (May 16, 2007 7:48:50 PM)
Hey Robyn, HGow goes it?
PaRay (May 16, 2007 7:49:40 PM)
I am too busy to multi-task!!! LOL
Robyn-G (May 16, 2007 7:53:13 PM)
it's going pretty good
Robyn-G (May 16, 2007 7:53:18 PM)
nice weather right now
Robyn-G (May 16, 2007 7:53:20 PM)
how are you?
PaRay (May 16, 2007 7:53:47 PM)
We are doing fine. Having a nice spring too.
stephanie-w (May 16, 2007 7:54:17 PM)
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stephanie-w (May 16, 2007 7:54:32 PM)
hello
PaRay (May 16, 2007 7:54:32 PM)
Hi Steph.
Shar37 (May 16, 2007 7:54:34 PM)
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Shar37 (May 16, 2007 7:54:44 PM)
Hi everyone
PaRay (May 16, 2007 7:54:48 PM)
Hi Shar
stephanie-w (May 16, 2007 7:54:50 PM)
Hi shar
Robyn-G (May 16, 2007 7:54:56 PM)
hi shar and stephanie
Shar37 (May 16, 2007 7:55:00 PM)
How's it going tonight?
Robyn-G (May 16, 2007 7:55:13 PM)
good, and you?
stephanie-w (May 16, 2007 7:55:31 PM)
busy today
Shar37 (May 16, 2007 7:56:59 PM)
Tired but OK. I had to mow part of the yard because the guy who I hired has been flaking out for the 3 day in a row and no sooner do I get done and he shows up, telling me he is on his way to chior practice but can come by after.
Shar37 (May 16, 2007 7:57:31 PM)
Not sure if I should trust him to come by next week after the last few days.
suziern (May 16, 2007 7:58:28 PM)
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suziern (May 16, 2007 7:58:40 PM)
Hey guys
Shar37 (May 16, 2007 7:58:42 PM)
Hi suzie
suziern (May 16, 2007 7:58:52 PM)
Stephanie, thank you so much for the thank you card from your daughter
suziern (May 16, 2007 7:58:57 PM)
That was nice of her
stephanie-w (May 16, 2007 7:59:11 PM)
you welcome I am glad you got it
suziern (May 16, 2007 7:59:34 PM)
How are you all doing tonight?
stephanie-w (May 16, 2007 7:59:54 PM)
I have been busy all day
Robyn-G (May 16, 2007 8:00:08 PM)
ray, do we have a topic for tonight?
Robyn-G (May 16, 2007 8:00:22 PM)
was it caregiver related or something? my memory is failing me
suziern (May 16, 2007 8:00:31 PM)
Me too, I worked till 6, I work from home normally but have to go into the office downtown for mandatory training from 8-noon for 4 more days
suziern (May 16, 2007 8:00:39 PM)
sure make me appreciate normally being at home
bette (May 16, 2007 8:00:39 PM)
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suziern (May 16, 2007 8:00:44 PM)
with the price of gas
Robyn-G (May 16, 2007 8:00:55 PM)
hi bette
stephanie-w (May 16, 2007 8:01:01 PM)
Gas ias awful
PaRay (May 16, 2007 8:01:02 PM)
Robyn...Not that I know about. Sounds good to me.
stephanie-w (May 16, 2007 8:01:07 PM)
hi bette
Robyn-G (May 16, 2007 8:01:09 PM)
thanks ray
suziern (May 16, 2007 8:01:13 PM)
Hi Bette
Shar37 (May 16, 2007 8:01:13 PM)
We went to see body worlds exhibit on Sunday in Dallas. If it's ever in your area it's pretty cool to see. Christopher was in the chair and I was pushing and walking his dog and my harness. His dog was perfect and did not miss a beat.
Robyn-G (May 16, 2007 8:01:18 PM)
gas is over $3.40 a gallon here for regular
suziern (May 16, 2007 8:01:45 PM)
I miss Dallas Shar, I lived there for 4 years
stephanie-w (May 16, 2007 8:01:55 PM)
I paid$3.39 today
Shar37 (May 16, 2007 8:01:57 PM)
Oh my goodness I can't complain about 2.85 a gallon.
suziern (May 16, 2007 8:02:00 PM)
almost got married there too
beth (May 16, 2007 8:02:07 PM)
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suziern (May 16, 2007 8:02:15 PM)
Hi Beth
stephanie-w (May 16, 2007 8:02:16 PM)
hi beth
emaddock (May 16, 2007 8:02:20 PM)
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suziern (May 16, 2007 8:02:25 PM)
Hi maddock
Robyn-G (May 16, 2007 8:02:27 PM)
hi emaddock
Robyn-G (May 16, 2007 8:02:29 PM)
welcome back
stephanie-w (May 16, 2007 8:02:39 PM)
hi emadddock
Shar37 (May 16, 2007 8:02:40 PM)
A cool front came thru today and it was gorgeous outside.
beth (May 16, 2007 8:02:44 PM)
hi i'll be right back
emaddock (May 16, 2007 8:02:45 PM)
hi all.....sorry i missed the last 2 weeks....
suziern (May 16, 2007 8:02:46 PM)
k
bette (May 16, 2007 8:02:48 PM)
Gas is about $3,38 ,
suziern (May 16, 2007 8:03:04 PM)
Bette are you in LA area
stephanie-w (May 16, 2007 8:03:04 PM)
it is cold here
Robyn-G (May 16, 2007 8:03:19 PM)
so in my reading about mmd i read something in a publication from the UW that I haven't read before
suziern (May 16, 2007 8:03:30 PM)
what was that
Robyn-G (May 16, 2007 8:03:32 PM)
it talked about a "pre-mutation" range of repeats,
emaddock (May 16, 2007 8:03:55 PM)
what does that mean?
suziern (May 16, 2007 8:03:57 PM)
would that be 38-50 range
Robyn-G (May 16, 2007 8:04:02 PM)
yes suziern
Robyn-G (May 16, 2007 8:04:13 PM)
i shoulda known that you would know, i was going to flip to that page - :)
stephanie-w (May 16, 2007 8:04:16 PM)
i think you guys are getting in over my heads
suziern (May 16, 2007 8:04:19 PM)
are there any symptoms that present with that?
Robyn-G (May 16, 2007 8:04:24 PM)
actually it says 35-49
Robyn-G (May 16, 2007 8:04:26 PM)
no
Robyn-G (May 16, 2007 8:04:32 PM)
no clinical signs
bette (May 16, 2007 8:05:01 PM)
Anything new with Joe's mom?
Shar37 (May 16, 2007 8:05:11 PM)
Has anyone been tested again after several years have gone by and had more repeats the 2nd time?
Robyn-G (May 16, 2007 8:05:29 PM)
shar, we will soon find out
Robyn-G (May 16, 2007 8:05:55 PM)
joe's original test from 1995 says greater than 99 repeats, which is not real helpful other than showing a "full mutation"
suziern (May 16, 2007 8:06:01 PM)
Stephanie - you know how 0-37 is the normal CTG repeat range? Well she is talking about 35-50 being a range of Pre Mutation, no symptoms, however an expansion has taken place, so if there are offspring, it could be a bigger expansion
Robyn-G (May 16, 2007 8:06:01 PM)
he is going to be retested though
bette (May 16, 2007 8:06:17 PM)
Mark and I spent the afternoon with Corey and Kevin. We went to the Nethercutt Meusuam today. It was fun. Corey will be down heere until the 25th I think. He is doing O.K., taking it one day at a time. He may be on later.
Robyn-G (May 16, 2007 8:06:17 PM)
good explanation suziern
Robyn-G (May 16, 2007 8:06:30 PM)
i'm so glad you're able to do that, bette
Robyn-G (May 16, 2007 8:06:37 PM)
i'm sure corey and kevin need that
Shar37 (May 16, 2007 8:06:58 PM)
Corey is in my thoughts daily.
Robyn-G (May 16, 2007 8:07:00 PM)
to answer your earlier question, bette, she is going to the UW for testing in June
suziern (May 16, 2007 8:07:09 PM)
I have been wanting to send Kevin something neat, but haven't figured out something yet
Robyn-G (May 16, 2007 8:07:28 PM)
you're so thoughtful suzie
suziern (May 16, 2007 8:07:39 PM)
everyone here is
bette (May 16, 2007 8:07:41 PM)
Suzi, I'm sure you will come up with something. You always do.
REDHEADER (May 16, 2007 8:07:49 PM)
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REDHEADER (May 16, 2007 8:07:53 PM)
hello all
suziern (May 16, 2007 8:07:54 PM)
Hey red
Robyn-G (May 16, 2007 8:07:54 PM)
hi red
Shar37 (May 16, 2007 8:07:58 PM)
Hi Red
bette (May 16, 2007 8:08:23 PM)
Corey installed Skype for me today but I don't have a mike.
suziern (May 16, 2007 8:08:41 PM)
I don't have something for my Skype
suziern (May 16, 2007 8:08:51 PM)
headset I think is what I need
beth (May 16, 2007 8:08:53 PM)
i am ack on now
stephanie-w (May 16, 2007 8:08:55 PM)
helloRed
REDHEADER (May 16, 2007 8:09:12 PM)
geez, I don't know why, but my computer is running at half the speed of smell right now
beth (May 16, 2007 8:09:13 PM)
bck
bette (May 16, 2007 8:09:21 PM)
Corey said I could use the speakers on the computer.
REDHEADER (May 16, 2007 8:09:44 PM)
u son't need a headset, I use a mike and my computer speakers
beth (May 16, 2007 8:09:49 PM)
i can't get skype to work on my comp
stephanie-w (May 16, 2007 8:10:22 PM)
I had that problem with my computer this weekdend
REDHEADER (May 16, 2007 8:10:35 PM)
I have like 3 voice programs, and 1 instant messenger on my comp beth
REDHEADER (May 16, 2007 8:11:08 PM)
which is good when u consider it is 3 years old
Shar37 (May 16, 2007 8:11:21 PM)
Well I am going to go for now and let the doggies go play outside for a bit before bed while my legs are still cooperating. Talk to you all later.
Robyn-G (May 16, 2007 8:11:35 PM)
bye shar
REDHEADER (May 16, 2007 8:11:35 PM)
have a good nite shar
bette (May 16, 2007 8:11:37 PM)
Red, I'm not sure I need one! I'm not on line very much unless I am actually working.
Shar37 (May 16, 2007 8:11:41 PM)
Bye
Shar37 (May 16, 2007 8:11:44 PM)
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stephanie-w (May 16, 2007 8:11:46 PM)
bye Shar
beth (May 16, 2007 8:11:48 PM)
i have yahoo instant messengr and aim instant messenger and MSN instant messenger and can use the mic on yahoo
REDHEADER (May 16, 2007 8:11:49 PM)
good point
suziern (May 16, 2007 8:12:03 PM)
Stephanie, is your dad going to try and get on the chat?
Robyn-G (May 16, 2007 8:12:06 PM)
emaddock, how are you doing? how is your brother?
REDHEADER (May 16, 2007 8:12:26 PM)
I have AIM, Ventrillo, TeamSpeak, and Skype
vdoman (May 16, 2007 8:12:30 PM)
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stephanie-w (May 16, 2007 8:12:30 PM)
I don't know he is sick right now
Robyn-G (May 16, 2007 8:12:39 PM)
Hey corey!
stephanie-w (May 16, 2007 8:12:44 PM)
hi vdo
REDHEADER (May 16, 2007 8:12:51 PM)
hiya vdoman
suziern (May 16, 2007 8:12:53 PM)
Hi Corey
vdoman (May 16, 2007 8:12:55 PM)
Hi Everyone
bette (May 16, 2007 8:12:56 PM)
Does Yahoo come with a mike Beth?
beth (May 16, 2007 8:12:58 PM)
hi corey
emaddock (May 16, 2007 8:13:02 PM)
he's ok. still trying to get a test drive for his adaptive car. i have found out that 2nd cousins on my dad's side have MMD. apparently i missed that family memo earlier.
beth (May 16, 2007 8:13:14 PM)
no
Robyn-G (May 16, 2007 8:13:18 PM)
well that's interesting e
Robyn-G (May 16, 2007 8:13:25 PM)
finding out about your 2nd cousins
Robyn-G (May 16, 2007 8:13:32 PM)
so, now you know it came from your dad
Robyn-G (May 16, 2007 8:13:55 PM)
that would mean that your dad had it and that your dad's cousin had it right?
emaddock (May 16, 2007 8:13:59 PM)
yes - we've never met any of them. my sister is trying to find the info so we can see if we can contact them.
stephanie-w (May 16, 2007 8:13:59 PM)
I have 3 seconf cousins that had or have it
emaddock (May 16, 2007 8:14:03 PM)
i guess so....
emaddock (May 16, 2007 8:14:12 PM)
so does it often skip generations?
bette (May 16, 2007 8:14:21 PM)
Hi Corey, Thanks for today.
Robyn-G (May 16, 2007 8:14:22 PM)
so before that it would have originated with your great grandparents
REDHEADER (May 16, 2007 8:14:24 PM)
trying something ne tonite, gonna put my bi-pap on when I lay on the sofa, so if I fall alseep watching TV, I will still get the benefit from the bi-pap
Robyn-G (May 16, 2007 8:14:26 PM)
one of them anyway
beth (May 16, 2007 8:14:33 PM)
i know mine came from my mom
Robyn-G (May 16, 2007 8:14:38 PM)
good idea red
vdoman (May 16, 2007 8:14:42 PM)
Ur welcome Bette
suziern (May 16, 2007 8:14:47 PM)
that is a good idea red
REDHEADER (May 16, 2007 8:14:51 PM)
mine seemed to come from my dad
Robyn-G (May 16, 2007 8:14:51 PM)
really, beth? was she tested or how did you find out?
stephanie-w (May 16, 2007 8:14:52 PM)
You have a 50 50 chance of giving it to your children
REDHEADER (May 16, 2007 8:15:12 PM)
well, since I fall asleep on the couch a lot it made sense
emaddock (May 16, 2007 8:15:19 PM)
oh - none of us (6 siblings) had any children.
Robyn-G (May 16, 2007 8:15:20 PM)
that's right, steph
bette (May 16, 2007 8:15:27 PM)
good idea red.
REDHEADER (May 16, 2007 8:15:30 PM)
and if u r male, u have a 50-50 chance of being sterile
stephanie-w (May 16, 2007 8:15:36 PM)
lucky
emaddock (May 16, 2007 8:15:51 PM)
didn't know that.
stephanie-w (May 16, 2007 8:16:03 PM)
I did not know I had it until after i had emily
Robyn-G (May 16, 2007 8:16:04 PM)
e, no it doesn't skip generations
beth (May 16, 2007 8:16:06 PM)
she wwasn't tested because she is dead but looking back at pictures she had some of the symtoms
bette (May 16, 2007 8:16:08 PM)
I never heard that one red.
REDHEADER (May 16, 2007 8:16:12 PM)
I also think my erectile dysfunction is related to the MMD
Robyn-G (May 16, 2007 8:16:19 PM)
yes, red, that is likely
suziern (May 16, 2007 8:16:39 PM)
Yes I always wonder if BillyDean could ever even have children
stephanie-w (May 16, 2007 8:16:46 PM)
You can tell my great grandpa had it by pictures
Robyn-G (May 16, 2007 8:17:02 PM)
well, joe obviously could have children
vdoman (May 16, 2007 8:17:05 PM)
Hi Suzie
Robyn-G (May 16, 2007 8:17:09 PM)
but he is not as severe as billydean
REDHEADER (May 16, 2007 8:17:15 PM)
I forgot where I heard it about the sterility, but my dad had 4 kids, and at least 2 of us had it, so...
stephanie-w (May 16, 2007 8:17:28 PM)
They that gonadal atrrophy is a symtom
suziern (May 16, 2007 8:17:31 PM)
Hey Corey and Kevin
Robyn-G (May 16, 2007 8:17:42 PM)
yep, steph, i have read that too
emaddock (May 16, 2007 8:17:51 PM)
my dad was a good baby-maker. i'm sure there would have been more children if he hadn't died at 37.
REDHEADER (May 16, 2007 8:17:51 PM)
yeah, I know stepanie-w, 1 of them is kinda shrunken
beth (May 16, 2007 8:17:52 PM)
does anyone elae have problems with pain in their arms
vdoman (May 16, 2007 8:18:01 PM)
We are in LA with my mom for 10 days
Shabake (May 16, 2007 8:18:01 PM)
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Robyn-G (May 16, 2007 8:18:08 PM)
hi shabake
REDHEADER (May 16, 2007 8:18:09 PM)
not me
Robyn-G (May 16, 2007 8:18:13 PM)
welcome back
Shabake (May 16, 2007 8:18:19 PM)
hi everyone
Robyn-G (May 16, 2007 8:18:23 PM)
shabake, could you refresh my memory
Robyn-G (May 16, 2007 8:18:32 PM)
i think you have a baby with mmd?
Shabake (May 16, 2007 8:18:36 PM)
about what robin/
REDHEADER (May 16, 2007 8:18:37 PM)
but sometimes my bad leg (the left one) falls asleep when I a on the toilet
Robyn-G (May 16, 2007 8:18:38 PM)
or am i completely wrong
suziern (May 16, 2007 8:18:39 PM)
If BillyDean is not sterile, then he would HAVE to have a sperm picked out that was not affected I am sure as from everything I have read, if he could have children, and had one, if he passed the CTG expansion to the baby it would not live maybe
stephanie-w (May 16, 2007 8:18:46 PM)
James andI tried for 5 years to have another nothiing ever happend
Robyn-G (May 16, 2007 8:18:59 PM)
i think you're right suziern
REDHEADER (May 16, 2007 8:19:47 PM)
my brother died of Marfan's Syndrome, but some of the photos and what I remember, I think he had MMD also
Shabake (May 16, 2007 8:19:50 PM)
Is that possible?
Robyn-G (May 16, 2007 8:19:54 PM)
Beth, Joe has pain when he takes a coat on or off, but that is in his shoulder
beth (May 16, 2007 8:20:02 PM)
my husband tried for three years then i had to have a complete hystertomy
Robyn-G (May 16, 2007 8:20:07 PM)
wow, red, that sounds interesting
stephanie-w (May 16, 2007 8:20:15 PM)
I heaerd it was harder for a man to pass it on then a woman
suziern (May 16, 2007 8:20:26 PM)
anyway, when he gets older and we get to that bridge, maybe it will be easier find an unaffected sperm IF he can have children. That would be neat if he got that chance someday, but if that is not in the plan for him, something else is I am sure
vdoman (May 16, 2007 8:20:41 PM)
Usually a male with MMD offspring is less severely affected than a woman who has MMD
REDHEADER (May 16, 2007 8:20:49 PM)
I don't know if it is just me, but sometimes my arms hurt if I raise them above shoulder level
REDHEADER (May 16, 2007 8:21:03 PM)
of course the daily tai ch'i helps
Robyn-G (May 16, 2007 8:21:04 PM)
shabake, i remember you being on the chat, but i can't remember the details of your situation
Shabake (May 16, 2007 8:21:06 PM)
I don't know about tat
beth (May 16, 2007 8:21:19 PM)
my right arm is hurting almost all the time
bette (May 16, 2007 8:21:21 PM)
My arms are getting weaker. My shoulders hurt in the morning when I wake up.
Shabake (May 16, 2007 8:21:25 PM)
What would you like to know?
Robyn-G (May 16, 2007 8:21:29 PM)
vdo - who is less affected, the kids or the parent?
Robyn-G (May 16, 2007 8:21:45 PM)
who has mmd, shabake?
Shabake (May 16, 2007 8:21:50 PM)
I do
REDHEADER (May 16, 2007 8:21:51 PM)
about 3 years ago, I had a pinched nerve in my left leg, and it ain't been right since
vdoman (May 16, 2007 8:21:57 PM)
The kids of a male passig on the gene
beth (May 16, 2007 8:22:07 PM)
i go to the MD doctor on the 30th of this month
REDHEADER (May 16, 2007 8:22:30 PM)
I have an idea, lets make t-shirts that say "Ask me about MMD"?
Robyn-G (May 16, 2007 8:22:31 PM)
ok, thanks shabake.
stephanie-w (May 16, 2007 8:22:31 PM)
I heard there is medine ou there
vdoman (May 16, 2007 8:22:32 PM)
are less affected
Shabake (May 16, 2007 8:22:38 PM)
yw
Robyn-G (May 16, 2007 8:22:51 PM)
sometimes it's hard to keep up with all the chatters
Robyn-G (May 16, 2007 8:23:02 PM)
remembering all the details
Shabake (May 16, 2007 8:23:06 PM)
the doctor I go to doesn't seem to know much about MMD
REDHEADER (May 16, 2007 8:23:08 PM)
Mexilatine seemed to help me when I was in the double-blind research study for it
beth (May 16, 2007 8:23:12 PM)
it would be neat to have t-shirts
stephanie-w (May 16, 2007 8:23:13 PM)
most people would say what is MMD??
Shabake (May 16, 2007 8:23:29 PM)
thats right steph
REDHEADER (May 16, 2007 8:23:35 PM)
fortunately for me shabake, MMD is all my doc does
bette (May 16, 2007 8:23:44 PM)
Stephanie, that is the best way to educate the public.
Shabake (May 16, 2007 8:23:47 PM)
your lucky red
Robyn-G (May 16, 2007 8:23:52 PM)
wow, red, LUCKY!!
REDHEADER (May 16, 2007 8:23:59 PM)
yep stephanie, then we could tell them and raise awareness
Robyn-G (May 16, 2007 8:24:11 PM)
i really believe that we need to have something compiled to educate people about mmd
REDHEADER (May 16, 2007 8:24:16 PM)
yep, Doctor Thornton is awesome
Shabake (May 16, 2007 8:24:41 PM)
how do we do that robyn
Robyn-G (May 16, 2007 8:24:48 PM)
like when you go in and get a diagnosis you get to take something home with you to watch, maybe a video with info. from mmd doctors and case example information, practical stuff, management stuff
vdoman (May 16, 2007 8:24:51 PM)
Dr Thorton is a grea guy methim at the MMD conference
bette (May 16, 2007 8:24:59 PM)
Robyn, I use the MDA booklet on MMD. You can get them from Tucson
beth (May 16, 2007 8:25:01 PM)
i go to an MD clinic it is on the last WED of each month
Robyn-G (May 16, 2007 8:25:04 PM)
I have made contact with some people and we may be able to do this eventually
stephanie-w (May 16, 2007 8:25:14 PM)
kkkk
Shabake (May 16, 2007 8:25:15 PM)
can i help/
Robyn-G (May 16, 2007 8:25:15 PM)
i have that Bette, but I want something more than that
Robyn-G (May 16, 2007 8:25:38 PM)
Something that we as patients and caregivers can receive and also hand out to doctors, teachers, therapists, etc.
REDHEADER (May 16, 2007 8:25:52 PM)
has anyone heard from elliebedelia lately?
Shabake (May 16, 2007 8:25:57 PM)
count me in if possible
bette (May 16, 2007 8:26:01 PM)
Sounds good, keep working at it.
bette (May 16, 2007 8:26:10 PM)
No
Robyn-G (May 16, 2007 8:26:14 PM)
shabake, i feel awful for having a bad memory, but where are you located? do you have other family members with it, etc?
Robyn-G (May 16, 2007 8:26:18 PM)
thanks bette
suziern (May 16, 2007 8:26:26 PM)
Where is Marcia tonight I wonder
Robyn-G (May 16, 2007 8:26:35 PM)
with this disease, you all, we have got to work together
suziern (May 16, 2007 8:26:38 PM)
She is usually always on the chat
Shabake (May 16, 2007 8:26:41 PM)
I'm in Florida. I thnk my dad had it
beth (May 16, 2007 8:26:43 PM)
i wonder where brry is tonight
vdoman (May 16, 2007 8:26:50 PM)
Marcia in Las Vegas
REDHEADER (May 16, 2007 8:26:53 PM)
ament to that robyn
beth (May 16, 2007 8:26:55 PM)
barry
suziern (May 16, 2007 8:27:07 PM)
Oh and is Barry doing the LA gig this week
Robyn-G (May 16, 2007 8:27:14 PM)
go to http://www.runamerica.org/2007/
bette (May 16, 2007 8:27:15 PM)
Barry is probably in Oregon.
vdoman (May 16, 2007 8:27:20 PM)
Barry is in Oregon now
Robyn-G (May 16, 2007 8:27:20 PM)
to see a recent fundraiser
REDHEADER (May 16, 2007 8:27:21 PM)
I am up here in rochester,ny
stephanie-w (May 16, 2007 8:27:22 PM)
He was going on vacation
Robyn-G (May 16, 2007 8:27:27 PM)
it was very encouraging to read about
suziern (May 16, 2007 8:27:39 PM)
yes I have been following that Robyn
emaddock (May 16, 2007 8:27:48 PM)
red, is your dr part of the research at Rochester Hospital?
bette (May 16, 2007 8:27:53 PM)
Suzi, yes, Barry is do in Friday. Mark and I hope to get together with the Cohens for dinner Friday night.
suziern (May 16, 2007 8:27:53 PM)
I would like to participate in that somehow
Robyn-G (May 16, 2007 8:27:56 PM)
who is your doc, Red?
Shabake (May 16, 2007 8:27:57 PM)
Didn't he say something about a book?
beth (May 16, 2007 8:28:13 PM)
i think terrys book could help people to
REDHEADER (May 16, 2007 8:28:24 PM)
yes, Doctor Thornton is involved heavily in the research at Strong Memorial Hospital
stephanie-w (May 16, 2007 8:28:32 PM)
Barry and his son wrote an awesome book
Robyn-G (May 16, 2007 8:28:32 PM)
"Disabled and Challenged REach for your Dreams"
Robyn-G (May 16, 2007 8:28:39 PM)
That is Terry's book
REDHEADER (May 16, 2007 8:28:42 PM)
Doctor Thornton robyn
suziern (May 16, 2007 8:28:48 PM)
Yes I passed Terry and Barry's book out to everyone who came to my first MDAASG support group meeting for our IN chapter
emaddock (May 16, 2007 8:28:57 PM)
my brother is in Utica...but has a dr who doesn't seem to know as much as we wish.
bette (May 16, 2007 8:29:24 PM)
Most docs don't seem to know as much as we wish.
stephanie-w (May 16, 2007 8:29:30 PM)
suzie did you ever talk to Fluffy?
suziern (May 16, 2007 8:29:56 PM)
Not yet Steph, I need to get her email address again to follow up with her
REDHEADER (May 16, 2007 8:29:58 PM)
its all guesswork in a white coat, eh bette? LOL
vdoman (May 16, 2007 8:30:10 PM)
Hi Ray you are quiet tonite
bette (May 16, 2007 8:30:14 PM)
That is about it Red
suziern (May 16, 2007 8:30:34 PM)
If you see her on the chat sometime when I am not in the room, will you ask her for it or ask her to email me as I can pick her up anytime and also for our group events in July
PaRay (May 16, 2007 8:30:38 PM)
Corey..About to take a nap.
stephanie-w (May 16, 2007 8:30:44 PM)
I wish the Sullivans (?) had e mail
stephanie-w (May 16, 2007 8:30:57 PM)
I will
strawberry (May 16, 2007 8:30:59 PM)
(This user has entered Myotonic Chat Group)
suziern (May 16, 2007 8:31:04 PM)
you mean Salwin's?
vdoman (May 16, 2007 8:31:06 PM)
Hi Ann
beth (May 16, 2007 8:31:08 PM)
hi straw
stephanie-w (May 16, 2007 8:31:18 PM)
Hi Straw
strawberry (May 16, 2007 8:31:18 PM)
Hello everyone.
suziern (May 16, 2007 8:31:19 PM)
They are working on getting a computer and internet
bette (May 16, 2007 8:31:23 PM)
Hi Straw. How are you doing?
Robyn-G (May 16, 2007 8:31:24 PM)
bette, just yesterday the girls' doc was telling the intern that was with him that most docs don't ever see anyone with mmd
strawberry (May 16, 2007 8:31:33 PM)
We are doing fine
REDHEADER (May 16, 2007 8:31:41 PM)
It turns out my friends fiancee goes to Dr. Thornton as well. I let her borrow a lot of the literature I have about the condition. Sh e doesn't really know a lot
stephanie-w (May 16, 2007 8:31:43 PM)
They are so neat
REDHEADER (May 16, 2007 8:31:48 PM)
about it
Shabake (May 16, 2007 8:31:48 PM)
hi straw
stephanie-w (May 16, 2007 8:32:07 PM)
really sweet people
suziern (May 16, 2007 8:32:09 PM)
Yes and they are such wonderful parents
suziern (May 16, 2007 8:32:14 PM)
Teddy is sooo lucky
stephanie-w (May 16, 2007 8:32:34 PM)
Billy Dean is lucky too
bette (May 16, 2007 8:32:41 PM)
Whenever my Docs have someone with them in training they all get a lecture.
beth (May 16, 2007 8:32:51 PM)
my husband got alot off the internet about MMD and it is now in the file cabinet
suziern (May 16, 2007 8:32:55 PM)
Thank you Stephanie
vdoman (May 16, 2007 8:33:07 PM)
Suzette who is Teddy?
suziern (May 16, 2007 8:33:22 PM)
He is a young man in our IN Chapter support group
suziern (May 16, 2007 8:33:33 PM)
He is 16, both his parents bring him to EVERY meeting so far
suziern (May 16, 2007 8:33:41 PM)
His mother is affected as well
beth (May 16, 2007 8:33:55 PM)
my husband also sent my dad and stpe mom the web sites where he got the info
suziern (May 16, 2007 8:34:02 PM)
They are extremely nice people and wonderful parents
vdoman (May 16, 2007 8:34:14 PM)
How affected are they Suz
suziern (May 16, 2007 8:34:42 PM)
His mother is on oxygen all the time, uses her wheelchair a lot but can ambulate if she needs too
suziern (May 16, 2007 8:34:52 PM)
Teddy's repeat is very high
suziern (May 16, 2007 8:35:21 PM)
Teddy's father said that he is the luckiest dad in the world because he has a 16 year old son who always wants to be with him
REDHEADER (May 16, 2007 8:35:22 PM)
I had an odd thing happen today, I was jonesing really bad for some chocolate, and I don't have much of a sweet tooth at all. I maen my favorite Ice cream is vanilla
vdoman (May 16, 2007 8:35:31 PM)
Does he have any mental retardation
beth (May 16, 2007 8:35:38 PM)
my repeat is highn but i can't remember the number
suziern (May 16, 2007 8:35:38 PM)
yes he does
strawberry (May 16, 2007 8:36:41 PM)
Barry and Julie aren't on. Are they in Oregon and California this week?
vdoman (May 16, 2007 8:37:01 PM)
Kevin was just at the UCLA MD Clinic and the Doc said he was a classic case of CMMD
stephanie-w (May 16, 2007 8:37:10 PM)
do we all get a number? I remember somethin in the thousands
suziern (May 16, 2007 8:37:10 PM)
One commonality I have found belonging to this MDAASG family is that the people are such decent, kind, helpful, classy people who all seem to put people first and realize that when it comes right down to it, people are all that matters.
bette (May 16, 2007 8:37:20 PM)
Barry and Julie will be in L.A.
Robyn-G (May 16, 2007 8:37:25 PM)
Amen Suziern!
bette (May 16, 2007 8:37:27 PM)
Friday
suziern (May 16, 2007 8:37:29 PM)
Great friends to have that I never would have met otherwise
suziern (May 16, 2007 8:37:38 PM)
so I am grateful for that
REDHEADER (May 16, 2007 8:37:41 PM)
yes suziern, we are all like a big family
strawberry (May 16, 2007 8:38:02 PM)
Corey, CMMD about Kevin new information to you?
stephanie-w (May 16, 2007 8:38:04 PM)
yes that is exactly true
beth (May 16, 2007 8:38:20 PM)
i enjoy the chats even if we don't talk about the MMD
strawberry (May 16, 2007 8:38:28 PM)
Sorry, I left out the word was
REDHEADER (May 16, 2007 8:38:30 PM)
my cat has been a psycho today, I think she got some radioactive cat nip, LOL
emaddock (May 16, 2007 8:38:48 PM)
i enjoy too.....but i've got to go. thanks for the info.....good night.
stephanie-w (May 16, 2007 8:38:49 PM)
It is like everyone knows I am saying
emaddock (May 16, 2007 8:38:53 PM)
(This user has left DigiChat)
stephanie-w (May 16, 2007 8:39:02 PM)
they understand
Robyn-G (May 16, 2007 8:39:17 PM)
goodnight emaddock
strawberry (May 16, 2007 8:39:21 PM)
Beth, where are you from
Robyn-G (May 16, 2007 8:39:27 PM)
yes, stephanie, we all speak the same language
beth (May 16, 2007 8:39:27 PM)
texas
suziern (May 16, 2007 8:39:38 PM)
Yes Stephanie, you spoke highly of us all at the meeting Saturday. I could tell many were encouraged to come here and log on for support and friends.
bette (May 16, 2007 8:39:40 PM)
Yes Stephanie that is the best thing about the chat room and the support groups.
strawberry (May 16, 2007 8:40:03 PM)
I think I asked you that last week. Do you have MMD, or are you a caregiver Beth?
REDHEADER (May 16, 2007 8:40:04 PM)
Only time I spent in Texas was in AIT, and CF 95, and those were in the desert
beth (May 16, 2007 8:40:14 PM)
i have made alot of friends on here
vdoman (May 16, 2007 8:40:21 PM)
No Ann not anything new just classic symptoms Kevin needs some testing EKG and Blood tests to make sure he is doing ok
beth (May 16, 2007 8:40:29 PM)
i have MMD
REDHEADER (May 16, 2007 8:40:30 PM)
down in Ek Paso
REDHEADER (May 16, 2007 8:40:36 PM)
El
strawberry (May 16, 2007 8:41:03 PM)
Beth, do you have other family members with it?
REDHEADER (May 16, 2007 8:41:23 PM)
we have both those with MMD and caregivers on here Beth
beth (May 16, 2007 8:41:25 PM)
my mom had but she is dead
strawberry (May 16, 2007 8:41:47 PM)
How long have you had the diagnosis?
beth (May 16, 2007 8:42:05 PM)
i know but my husband doesn't want ti get on these chats
REDHEADER (May 16, 2007 8:42:20 PM)
my sis doesn't either
stephanie-w (May 16, 2007 8:42:37 PM)
my brother won;t
suziern (May 16, 2007 8:42:42 PM)
different things work for everyone
beth (May 16, 2007 8:42:45 PM)
iwas diagnosed in 2001
REDHEADER (May 16, 2007 8:42:48 PM)
she knows zip about computers, and doesn't want to learn
suziern (May 16, 2007 8:42:49 PM)
How is Scott doing Stephanie
stephanie-w (May 16, 2007 8:43:01 PM)
Ok I guess
REDHEADER (May 16, 2007 8:43:02 PM)
I was diagnosed in 1997
bette (May 16, 2007 8:43:08 PM)
Ut dies seen kuje we gave fewer husbands than wives.
stephanie-w (May 16, 2007 8:43:16 PM)
He is busy with his kids
stephanie-w (May 16, 2007 8:43:29 PM)
they are soo cute
suziern (May 16, 2007 8:43:51 PM)
maybe he can bring them to our events in July
REDHEADER (May 16, 2007 8:43:56 PM)
kids are great, as long as I can give them back to their parents at the end of the day
strawberry (May 16, 2007 8:43:59 PM)
vdoman, how often does the MDA clinic see Kevin?
bette (May 16, 2007 8:44:02 PM)
It does seem that we have fewer husbands than wives.
suziern (May 16, 2007 8:44:03 PM)
haha red
beth (May 16, 2007 8:44:04 PM)
mt dad and step mom don't do chats and my sisters don't have time
Robyn-G (May 16, 2007 8:44:23 PM)
fewer husbands than wives, as caregivers?
Robyn-G (May 16, 2007 8:44:31 PM)
as chatters? or what?
REDHEADER (May 16, 2007 8:44:32 PM)
wow, it is almost 10pm, time flies on this chat
suziern (May 16, 2007 8:44:32 PM)
How is Kevin doing Corey?
Robyn-G (May 16, 2007 8:44:33 PM)
i'm lost
stephanie-w (May 16, 2007 8:44:43 PM)
Luckily Jen and Scott could never have kids so they adopted 2 from Guatelma
REDHEADER (May 16, 2007 8:44:55 PM)
I beleive as chatters robyn
suziern (May 16, 2007 8:44:59 PM)
Wow
Robyn-G (May 16, 2007 8:45:02 PM)
ok, thanks red
beth (May 16, 2007 8:45:05 PM)
i am 44 to old for kids
vdoman (May 16, 2007 8:45:20 PM)
It has been about 5 years since his last clinic. I want to take him once a year
beth (May 16, 2007 8:45:24 PM)
my husband is 49
Robyn-G (May 16, 2007 8:45:27 PM)
we have ray, vdoman, barry
REDHEADER (May 16, 2007 8:45:31 PM)
I am 40, will be 41 on June 3rd, and I have no kids and am not married
Robyn-G (May 16, 2007 8:45:42 PM)
who, by the way, are all an inspiration to me
Shabake (May 16, 2007 8:45:43 PM)
I would have loved it but never met the right persion
strawberry (May 16, 2007 8:45:43 PM)
Is clinic in LA?
suziern (May 16, 2007 8:45:46 PM)
I am about to be 40 red
babykayla (May 16, 2007 8:45:47 PM)
(This user has entered Myotonic Chat Group)
Robyn-G (May 16, 2007 8:45:53 PM)
red, you and joe are very close in age
babykayla (May 16, 2007 8:45:53 PM)
hi everyone
suziern (May 16, 2007 8:45:53 PM)
hey Lisa!
Robyn-G (May 16, 2007 8:45:57 PM)
hi lisa!
vdoman (May 16, 2007 8:46:01 PM)
yes at UCLA
Shabake (May 16, 2007 8:46:02 PM)
hi baby
suziern (May 16, 2007 8:46:02 PM)
LOVE that yahoo group you started
babykayla (May 16, 2007 8:46:04 PM)
long time
Robyn-G (May 16, 2007 8:46:08 PM)
too long
vdoman (May 16, 2007 8:46:09 PM)
Hi Lisa
suziern (May 16, 2007 8:46:09 PM)
I have met so many in there
Shabake (May 16, 2007 8:46:10 PM)
my dog is my kid
babykayla (May 16, 2007 8:46:11 PM)
oh good
stephanie-w (May 16, 2007 8:46:13 PM)
hi lisa
Robyn-G (May 16, 2007 8:46:16 PM)
so, Lisa, did you do the run america website?
strawberry (May 16, 2007 8:46:19 PM)
How is you week going in LA?
beth (May 16, 2007 8:46:20 PM)
hi lisa
bette (May 16, 2007 8:46:29 PM)
As care giver chatters.
babykayla (May 16, 2007 8:46:30 PM)
hi
Robyn-G (May 16, 2007 8:46:33 PM)
Lisa, please read the transcripts in a day or two when they are available
babykayla (May 16, 2007 8:46:40 PM)
RObyn, yes
REDHEADER (May 16, 2007 8:46:48 PM)
by the way corey, I would like u to e-mail me the address for your Yahoo photo abum, I lost it
Robyn-G (May 16, 2007 8:46:49 PM)
wonderful job! Thank you thank you!
babykayla (May 16, 2007 8:47:05 PM)
Ok, Robyn, what's in there
babykayla (May 16, 2007 8:47:26 PM)
so we have some news
vdoman (May 16, 2007 8:47:26 PM)
Doing ok I need to keep myself busy though
suziern (May 16, 2007 8:47:31 PM)
I would like to train for that run america, does anyone know how we get involved in it
babykayla (May 16, 2007 8:47:33 PM)
Kayla got her trach out on 5/9
Robyn-G (May 16, 2007 8:47:37 PM)
lisa - we talked about the same things my emails with you and others were about a few weeks ago, does that make sense?
Robyn-G (May 16, 2007 8:47:41 PM)
Yeah Kayla!
beth (May 16, 2007 8:47:46 PM)
corey did you get those two pics i sent you to go in the photo album
suziern (May 16, 2007 8:47:52 PM)
I know I could do it if I had BillyDean as my inspiration
Shabake (May 16, 2007 8:47:54 PM)
I need a support group
babykayla (May 16, 2007 8:47:57 PM)
suzie, I can get you in touch with the people who organize the run
babykayla (May 16, 2007 8:48:01 PM)
do you have my email
Robyn-G (May 16, 2007 8:48:04 PM)
compiling information and dissimenating (SP?) it to doctors, patients, etc
vdoman (May 16, 2007 8:48:16 PM)
(This user has left DigiChat)
babykayla (May 16, 2007 8:48:19 PM)
actually, I put the contact info on the website: www.runamerica.org
Robyn-G (May 16, 2007 8:48:27 PM)
he did beth, i saw them :)
babykayla (May 16, 2007 8:48:33 PM)
it's craig johnston and barry wald
Robyn-G (May 16, 2007 8:48:39 PM)
I was thinking the same thing Suziern
suziern (May 16, 2007 8:48:42 PM)
I will contact them and see how to sign up for next year
Shabake (May 16, 2007 8:48:42 PM)
can someone help me get started?
babykayla (May 16, 2007 8:48:45 PM)
i just did the website
REDHEADER (May 16, 2007 8:48:54 PM)
well, gots ta go people, take care my friends
suziern (May 16, 2007 8:49:01 PM)
bye red
strawberry (May 16, 2007 8:49:01 PM)
bye red
REDHEADER (May 16, 2007 8:49:04 PM)
(This user has left DigiChat)
Robyn-G (May 16, 2007 8:49:06 PM)
shabake, where did you say you live?
beth (May 16, 2007 8:49:06 PM)
bye red
stephanie-w (May 16, 2007 8:49:06 PM)
uou too Red
vdoman (May 16, 2007 8:49:12 PM)
(This user has entered Myotonic Chat Group)
Robyn-G (May 16, 2007 8:49:18 PM)
you can contact the mda and see if there is a support group near you
babykayla (May 16, 2007 8:49:18 PM)
but when the time comes for Run America again, I'll be sure to post up something here
Shabake (May 16, 2007 8:49:20 PM)
Plantation F
strawberry (May 16, 2007 8:49:25 PM)
Hi Corey
suziern (May 16, 2007 8:49:32 PM)
Robyn, too bad we do not live closer together, we could train together
suziern (May 16, 2007 8:49:36 PM)
I need a new goal
babykayla (May 16, 2007 8:49:40 PM)
hi Corey
suziern (May 16, 2007 8:49:40 PM)
another goal
Robyn-G (May 16, 2007 8:49:49 PM)
i don't think there are many MMD specific support groups
Robyn-G (May 16, 2007 8:50:02 PM)
suziern started one in Indiana
vdoman (May 16, 2007 8:50:05 PM)
Hi Lisa got bumped
babykayla (May 16, 2007 8:50:06 PM)
how are you doing Corey
beth (May 16, 2007 8:50:18 PM)
we used to have a support but lost our facillator
Shabake (May 16, 2007 8:50:21 PM)
whatr abnout like people who contact each other outside of chat?
Robyn-G (May 16, 2007 8:50:24 PM)
yes suzette, that would be fun training together
vdoman (May 16, 2007 8:50:27 PM)
Doing ok as long as I stay busy
Robyn-G (May 16, 2007 8:50:43 PM)
shabake, we get together at a conference once a year
suziern (May 16, 2007 8:50:48 PM)
I would like to see an MMD specific support group in each state
Shabake (May 16, 2007 8:50:53 PM)
where?
Robyn-G (May 16, 2007 8:50:54 PM)
other than that we chat, email, instant message, talk on the phone etc.
Robyn-G (May 16, 2007 8:51:04 PM)
I just emailed you the info.
suziern (May 16, 2007 8:51:06 PM)
I would like to start one in OH, KY, IL
babykayla (May 16, 2007 8:51:12 PM)
Hi Shabake, we haven't met
Shabake (May 16, 2007 8:51:19 PM)
I would like to do that also
babykayla (May 16, 2007 8:51:29 PM)
I'm Lisa, aka: baby kayla's mom
Shabake (May 16, 2007 8:51:31 PM)
Hi baby nice to meet you
Robyn-G (May 16, 2007 8:51:32 PM)
Yes, Suzette, I would like to see that too
babykayla (May 16, 2007 8:51:46 PM)
my daughter Kayla is 21 months old and has the congenital form of MMD
beth (May 16, 2007 8:51:51 PM)
i don't think anyone has my phone #
vdoman (May 16, 2007 8:51:56 PM)
How is Kayla doing after the trach is out
babykayla (May 16, 2007 8:52:04 PM)
she is doing great
suziern (May 16, 2007 8:52:16 PM)
That way, when families are newly dx, they can be given support group information from their doctor - should they choose to come
babykayla (May 16, 2007 8:52:18 PM)
her sats are finally staying up and she doesn't need oxygen
suziern (May 16, 2007 8:52:23 PM)
That would have helped me A LOT at the time
vdoman (May 16, 2007 8:52:38 PM)
AWESOME!!!!!
Robyn-G (May 16, 2007 8:52:42 PM)
yes, suzie, i agree
babykayla (May 16, 2007 8:52:46 PM)
Shabake, do you have MMD or a family member of friend?
Shabake (May 16, 2007 8:52:51 PM)
I;m glad she is doing well
suziern (May 16, 2007 8:52:54 PM)
That is so wonderful Lisa
Shabake (May 16, 2007 8:53:00 PM)
I have it
babykayla (May 16, 2007 8:53:13 PM)
it's nice to have her appliance free for now
vdoman (May 16, 2007 8:53:25 PM)
How old are you Shake?
Shabake (May 16, 2007 8:53:26 PM)
Oh I'm sure
babykayla (May 16, 2007 8:53:30 PM)
on Mother's Day we took her to the mall and only had to carry a diaper bag
Shabake (May 16, 2007 8:53:37 PM)
45 vdo
babykayla (May 16, 2007 8:53:38 PM)
it felt GREAT!
beth (May 16, 2007 8:53:59 PM)
that's great lisa
Shabake (May 16, 2007 8:54:08 PM)
So your Mothers Day was great?
suziern (May 16, 2007 8:54:16 PM)
One of BillyDean's doctor' s told me that if he does not tolerate his Bipap then he would have to be trached
babykayla (May 16, 2007 8:54:22 PM)
Shabake, are you male or female............sorry so many questions but I haven't been able to get on in a while so I'm catchin up
suziern (May 16, 2007 8:54:24 PM)
I was shocked
babykayla (May 16, 2007 8:54:39 PM)
it was full of a lot of tears but tears of joy
vdoman (May 16, 2007 8:54:49 PM)
Shake I have a 24 yr old son with CMMD and I just lost my 49 year old wife to complications from MMD
Shabake (May 16, 2007 8:54:51 PM)
I'm female> Don't worry about questions
babykayla (May 16, 2007 8:55:03 PM)
it's the first time since Kayla was born that she hasn't had some kind of appliance sticking out of her
babykayla (May 16, 2007 8:55:21 PM)
I just got to hold my baby and be a mom for the first time and not a medical mom
Shabake (May 16, 2007 8:55:23 PM)
It must be wonderful
beth (May 16, 2007 8:55:48 PM)
that is so great lisa i kept ypu and your family in my prayers
babykayla (May 16, 2007 8:55:56 PM)
Corey, I miss Suzy so much, I can't even imagine how you must be feeling............we love ya
strawberry (May 16, 2007 8:55:56 PM)
suziern, my son Warren says I need to talk to you about bi-pap
Shabake (May 16, 2007 8:56:03 PM)
I always wanted children but I can't have any
bette (May 16, 2007 8:56:17 PM)
Lisa that is so great. We are looking forward to seeing all of you in September
vdoman (May 16, 2007 8:56:27 PM)
Love you guys too Lisa
babykayla (May 16, 2007 8:56:31 PM)
if anyone wants to see the latest on Kayla, you can check out her website: www.babykayla.com password is: kayla
stephanie-w (May 16, 2007 8:56:37 PM)
Chilren are a gift from God
babykayla (May 16, 2007 8:56:46 PM)
hi bette
babykayla (May 16, 2007 8:56:50 PM)
i didn't see you on
babykayla (May 16, 2007 8:56:58 PM)
how are things going?
beth (May 16, 2007 8:57:06 PM)
i wanted kids but can't have them
babykayla (May 16, 2007 8:57:16 PM)
by the way, we booked our tickets yesterday to come to the conference
babykayla (May 16, 2007 8:57:21 PM)
i can't wait to see everyone
Shabake (May 16, 2007 8:57:22 PM)
I know how you feel beth
suziern (May 16, 2007 8:57:29 PM)
I talked to Warren for about an hour a few weeks ago
suziern (May 16, 2007 8:57:37 PM)
about BillyDean's Bipap
bette (May 16, 2007 8:57:39 PM)
Things are gong just fine here. Keeping busy and coping with the MMD
beth (May 16, 2007 8:57:39 PM)
thank you shake
strawberry (May 16, 2007 8:57:42 PM)
Did he answer your questions
Shabake (May 16, 2007 8:57:47 PM)
yw beth
stephanie-w (May 16, 2007 8:57:49 PM)
My husband is home early for a change bye tal to you next week
vdoman (May 16, 2007 8:57:51 PM)
Kev and I are going to fly down for conference also
suziern (May 16, 2007 8:57:51 PM)
I would love to chat with you though Strawberry
babykayla (May 16, 2007 8:58:00 PM)
beth, we just tried to have another baby but were unsuccessful
Shabake (May 16, 2007 8:58:01 PM)
bye steph
suziern (May 16, 2007 8:58:02 PM)
Warren gave me a lot of tips
Robyn-G (May 16, 2007 8:58:04 PM)
booked our tickets today
Robyn-G (May 16, 2007 8:58:10 PM)
for the conference
strawberry (May 16, 2007 8:58:26 PM)
I don't know how to chat privately. Does Warren have your phone number?
stephanie-w (May 16, 2007 8:58:29 PM)
(This user has left DigiChat)
suziern (May 16, 2007 8:58:50 PM)
yes I think so, do you have MSN messenger?
bette (May 16, 2007 8:58:51 PM)
I was never able to have children either. It took me a very long ttime to accept that.
suziern (May 16, 2007 8:59:00 PM)
I chat a lot on there with Robyn
Robyn-G (May 16, 2007 8:59:03 PM)
strawberry - you double click on the persons name of who you want to private message and another window pops up
Shabake (May 16, 2007 8:59:04 PM)
sorry bette
babykayla (May 16, 2007 8:59:08 PM)
I just had IVF and PGD
strawberry (May 16, 2007 8:59:16 PM)
Thanks Robyn
babykayla (May 16, 2007 8:59:21 PM)
and 14 of the 18 embyos were affected with MMD
babykayla (May 16, 2007 8:59:25 PM)
it was very sad
Robyn-G (May 16, 2007 8:59:29 PM)
lisa, what do you think about the risks to you, even if the baby is not affected?
babykayla (May 16, 2007 8:59:32 PM)
the others had issues due to my age
Robyn-G (May 16, 2007 8:59:36 PM)
wow lisa
babykayla (May 16, 2007 8:59:47 PM)
we were really shocked
suziern (May 16, 2007 8:59:49 PM)
Oh Lisa, my heart goes out to you
Robyn-G (May 16, 2007 8:59:50 PM)
i hope i am not overstepping boundaries, i am just curious
Shabake (May 16, 2007 8:59:57 PM)
how long have anyone been on chat?
Robyn-G (May 16, 2007 9:00:10 PM)
i've been on for about 2 years shabake
babykayla (May 16, 2007 9:00:12 PM)
but glad that we didn't bring another child into the world that had to suffer like Kayla did in the beginning
Robyn-G (May 16, 2007 9:00:19 PM)
yes, lisa,
bette (May 16, 2007 9:00:28 PM)
I know I have been here from the 1st chat but I don't remember whenit started.
vdoman (May 16, 2007 9:00:29 PM)
Suzi did you get a webcam and mike for skype?
Robyn-G (May 16, 2007 9:00:29 PM)
you are so awesome, and so wonderful
babykayla (May 16, 2007 9:00:49 PM)
I've heard that the risks aren't great for having a baby
Robyn-G (May 16, 2007 9:00:59 PM)
really, i have heard that they are
Robyn-G (May 16, 2007 9:01:04 PM)
or rather, read that they can be,
beth (May 16, 2007 9:01:13 PM)
i just atsrted chat last year i think
babykayla (May 16, 2007 9:01:28 PM)
but I also had a complication with Kayla called Placenta Accreta which can be fatal so I know I have to be careful. I need to be around for Kayla
Shabake (May 16, 2007 9:01:39 PM)
this is only my second time
bette (May 16, 2007 9:01:44 PM)
I know my mother had toximia when I was born but I don't know if it had anything to do with MMD
babykayla (May 16, 2007 9:02:03 PM)
I've been on the chat since Aug. 2005 just before we got Kayla's diagnosis
babykayla (May 16, 2007 9:02:26 PM)
Robyn, what have you heard, I'd love to learn more
Robyn-G (May 16, 2007 9:02:26 PM)
lisa, how are you doing? and your mom?
strawberry (May 16, 2007 9:02:34 PM)
Gotta run
vdoman (May 16, 2007 9:02:35 PM)
Barry, Marcia Bette and I have been chatting for about 5 years
beth (May 16, 2007 9:02:36 PM)
i need to go i need to go to the bathroom bad goodnight and see ya'll next week
strawberry (May 16, 2007 9:02:40 PM)
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Shabake (May 16, 2007 9:02:43 PM)
bye straw
Robyn-G (May 16, 2007 9:02:44 PM)
Lisa, I would have to go back and re-read those chapters.
babykayla (May 16, 2007 9:03:05 PM)
Robyn, you mean as far as symptoms?
Robyn-G (May 16, 2007 9:03:13 PM)
I just got done (a few weeks ago) re-reading Harper's book "Present Management Future Therapy" and his book, "Myotonic Dystrophy, The Facts"
Shabake (May 16, 2007 9:03:16 PM)
vdo thats a long time
Robyn-G (May 16, 2007 9:03:20 PM)
yes, lisa?
vdoman (May 16, 2007 9:03:22 PM)
Suzi did yu get a webcam and mike yet
Robyn-G (May 16, 2007 9:03:28 PM)
sorry about the question mark
babykayla (May 16, 2007 9:03:31 PM)
in the Harper book
Robyn-G (May 16, 2007 9:03:38 PM)
I believe so
suziern (May 16, 2007 9:03:39 PM)
I have my computer speakers and a webcam
babykayla (May 16, 2007 9:03:41 PM)
i'll go back and read it again
beth (May 16, 2007 9:03:45 PM)
bye
suziern (May 16, 2007 9:03:49 PM)
Have never got a chance to try it yet
vdoman (May 16, 2007 9:03:51 PM)
No Mike yet
beth (May 16, 2007 9:03:59 PM)
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suziern (May 16, 2007 9:04:01 PM)
no mike, just my computer speakers
vdoman (May 16, 2007 9:04:24 PM)
You need to get a Mike so we can talk
suziern (May 16, 2007 9:04:33 PM)
yes that is on my list
babykayla (May 16, 2007 9:04:43 PM)
Corey, what's your skype name?
Shabake (May 16, 2007 9:04:47 PM)
well I'll talk to everyone next week bye
vdoman (May 16, 2007 9:04:54 PM)
te vdoman
babykayla (May 16, 2007 9:04:55 PM)
nice chatting with you
suziern (May 16, 2007 9:04:55 PM)
bye shake
Robyn-G (May 16, 2007 9:05:03 PM)
Lisa, i we were talking earlier on the chat about the "premutation stage", have you heard of that/
vdoman (May 16, 2007 9:05:03 PM)
thevdoman
Robyn-G (May 16, 2007 9:05:05 PM)
By shabake
Shabake (May 16, 2007 9:05:08 PM)
y2
Shabake (May 16, 2007 9:05:10 PM)
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babykayla (May 16, 2007 9:05:12 PM)
Hi Ray, are you hiding?
Robyn-G (May 16, 2007 9:05:19 PM)
no, he's watching
vdoman (May 16, 2007 9:05:37 PM)
Whats your skype name lisa
Robyn-G (May 16, 2007 9:06:55 PM)
we have about 5 minutes
Robyn-G (May 16, 2007 9:07:06 PM)
lisa, have you heard about a Pre-mutation stage?
vdoman (May 16, 2007 9:08:06 PM)
I just found your skype name lisa
bette (May 16, 2007 9:08:29 PM)
I'm going to say good night. Hope to see you all next week.
suziern (May 16, 2007 9:08:34 PM)
does anyone else have skype
Robyn-G (May 16, 2007 9:08:36 PM)
goodnight bette
bette (May 16, 2007 9:08:40 PM)
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vdoman (May 16, 2007 9:09:06 PM)
redheader
suziern (May 16, 2007 9:09:08 PM)
I have BillyDean back in my office again. It is 10pm here, he has taken off his Bipap again
suziern (May 16, 2007 9:09:20 PM)
I need to go and get him back in bed and hooked back up
suziern (May 16, 2007 9:09:32 PM)
Great talking to you all tonight, take care. Goodnight.
Robyn-G (May 16, 2007 9:09:35 PM)
goodnight suzette
suziern (May 16, 2007 9:10:33 PM)
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vdoman (May 16, 2007 9:10:51 PM)
bye everyone
Robyn-G (May 16, 2007 9:10:57 PM)
i might email you lisa
babykayla (May 16, 2007 9:10:58 PM)
Robyn what's a Pre=mutation stage
Robyn-G (May 16, 2007 9:11:01 PM)
bye corey,
vdoman (May 16, 2007 9:11:08 PM)
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Robyn-G (May 16, 2007 9:11:13 PM)
repeats from 35-49
PaRay (May 16, 2007 9:11:14 PM)
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Robyn-G (May 16, 2007 9:11:25 PM)
no clinical symptoms
Robyn-G (May 16, 2007 9:11:31 PM)
but can pass to next generation
Robyn-G (May 16, 2007 9:11:41 PM)
with anticipation (higher repeats)
Robyn-G (May 16, 2007 9:11:45 PM)
did you get all that?
babykayla (May 16, 2007 9:11:50 PM)
night Suzie
Robyn-G (May 16, 2007 9:11:56 PM)
i think we're going to get booted son
Robyn-G (May 16, 2007 9:11:57 PM)
soon
babykayla (May 16, 2007 9:12:01 PM)
oh, I knew that
babykayla (May 16, 2007 9:12:10 PM)
I thought you were talking about something new
Robyn-G (May 16, 2007 9:12:13 PM)
ok, i had just read that for the first time
Robyn-G (May 16, 2007 9:12:21 PM)
i had never heard that
Robyn-G (May 16, 2007 9:12:36 PM)
i have heard many say that if it is under 50, than you don't have it
Robyn-G (May 16, 2007 9:12:40 PM)
or can't pass it
babykayla (May 16, 2007 9:12:41 PM)
I have more than that
Robyn-G (May 16, 2007 9:12:49 PM)
yeah, you have around 70, right?
babykayla (May 16, 2007 9:13:01 PM)
75
Robyn-G (May 16, 2007 9:13:08 PM)
seems that from your mom to you, it didn't increase, is that right?
babykayla (May 16, 2007 9:13:11 PM)
my mom has 72
babykayla (May 16, 2007 9:13:23 PM)
and Kayla has 2500
Robyn-G (May 16, 2007 9:13:26 PM)
wow, that seems rare to not have an increase or at least such a small one
babykayla (May 16, 2007 9:13:28 PM)
what a jump
Robyn-G (May 16, 2007 9:13:32 PM)
yeah, that is a HUGE jump
Robyn-G (May 16, 2007 9:13:40 PM)
your mom is a twin, right?
Robyn-G (May 16, 2007 9:13:42 PM)
identical?
babykayla (May 16, 2007 9:13:43 PM)
it's seems crazy if you ask me
babykayla (May 16, 2007 9:13:50 PM)
yes, identical
Robyn-G (May 16, 2007 9:13:55 PM)
so she has it too?