Myotonic Chat Group
lost1112 (Apr 11, 2007 7:44:43 PM)
PaRay (Apr 11, 2007 7:46:02 PM)
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lost1112 (Apr 11, 2007 7:46:26 PM)
good evening
PaRay (Apr 11, 2007 7:46:27 PM)
Hi Lost. How are you doing?
lost1112 (Apr 11, 2007 7:46:42 PM)
not to bad and you
PaRay (Apr 11, 2007 7:46:57 PM)
Having a good week here.
lost1112 (Apr 11, 2007 7:47:08 PM)
glad to hear it
lost1112 (Apr 11, 2007 7:47:50 PM)
brb
gypsy (Apr 11, 2007 7:51:14 PM)
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gypsy (Apr 11, 2007 7:51:37 PM)
hi lost and paray
PaRay (Apr 11, 2007 7:51:51 PM)
Hi Gypsy. How is your fall weather? LOL
gypsy (Apr 11, 2007 7:52:05 PM)
warm
PaRay (Apr 11, 2007 7:52:33 PM)
Do you get snow in your area?
gypsy (Apr 11, 2007 7:52:47 PM)
no
Shar37 (Apr 11, 2007 7:52:57 PM)
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PaRay (Apr 11, 2007 7:53:08 PM)
Hi Shar
gypsy (Apr 11, 2007 7:53:22 PM)
but it not even getting cold been around 70 to 80 ar warmer
gypsy (Apr 11, 2007 7:53:30 PM)
hi shar
Shar37 (Apr 11, 2007 7:53:34 PM)
Hi everyone
Shar37 (Apr 11, 2007 7:54:00 PM)
How's it going tonight
Shar37 (Apr 11, 2007 7:54:36 PM)
Last Saturday it was snowing here in TX and today it's 75.
gypsy (Apr 11, 2007 7:54:57 PM)
ok thanks you ?
lost1112 (Apr 11, 2007 7:55:03 PM)
hi gypsy and shar
Shar37 (Apr 11, 2007 7:55:13 PM)
Hi lost
gypsy (Apr 11, 2007 7:55:35 PM)
hi lost
Shar37 (Apr 11, 2007 7:55:43 PM)
I was pretty out of it last week are you new to the group lost?
lost1112 (Apr 11, 2007 7:56:23 PM)
no not really been away for a while but thought i would slip back in tonight
marciamellows (Apr 11, 2007 7:56:50 PM)
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Shar37 (Apr 11, 2007 7:56:54 PM)
Nice to meet you.
barryc (Apr 11, 2007 7:57:06 PM)
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gypsy (Apr 11, 2007 7:57:14 PM)
hi marcia
Shar37 (Apr 11, 2007 7:57:21 PM)
Hi Marcia. Hi Barry
gypsy (Apr 11, 2007 7:57:23 PM)
hi barry
lost1112 (Apr 11, 2007 7:57:24 PM)
same here hi marcia and barry
PaRay (Apr 11, 2007 7:57:32 PM)
Hey MM and Barry.
barryc (Apr 11, 2007 7:57:43 PM)
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barryc (Apr 11, 2007 7:57:58 PM)
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lost1112 (Apr 11, 2007 7:58:12 PM)
welcome back Barry
Smurfette (Apr 11, 2007 7:58:26 PM)
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marciamellows (Apr 11, 2007 7:58:30 PM)
Hi everyone! Boy it sure has been a long time since lost has been here. Bring us up to date.
Shar37 (Apr 11, 2007 7:58:50 PM)
Does anyone think that calcium supliments will help keep bones strong as muscles have a harder time holding them together?
gypsy (Apr 11, 2007 7:59:19 PM)
hi smurfette
barryc (Apr 11, 2007 7:59:26 PM)
hi guys... I was busy adjusting speed and type.... don't you love digitchat!
lost1112 (Apr 11, 2007 7:59:28 PM)
not much to tell MM just haning in there one day at a time
Smurfette (Apr 11, 2007 7:59:38 PM)
Hi Gypsy! How's life?
barryc (Apr 11, 2007 7:59:47 PM)
lost, I thought you were lost.
lost1112 (Apr 11, 2007 7:59:54 PM)
not really Barry
gypsy (Apr 11, 2007 8:00:10 PM)
ok thanks but tiring
barryc (Apr 11, 2007 8:00:12 PM)
glad you joined our humble chat again.
lost1112 (Apr 11, 2007 8:00:22 PM)
lol
barryc (Apr 11, 2007 8:00:32 PM)
gypsy... what is new down under?
Shar37 (Apr 11, 2007 8:00:49 PM)
We now have a ramp from our front door to our driveway thanks to my coworkers.
Shar37 (Apr 11, 2007 8:00:55 PM)
Hi Tanya
Smurfette (Apr 11, 2007 8:01:06 PM)
That's good news, Shar!
gypsy (Apr 11, 2007 8:01:19 PM)
not much that i know of barry but i miss most things
barryc (Apr 11, 2007 8:01:23 PM)
three cheers for the coworkers!
gypsy (Apr 11, 2007 8:01:31 PM)
great shar :)
REDHEADER (Apr 11, 2007 8:01:59 PM)
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barryc (Apr 11, 2007 8:02:06 PM)
do you guys know about corey's wife, suzy? she is in the hospital and has been there over a week already.
Shar37 (Apr 11, 2007 8:02:07 PM)
One of my other Co workers gave us a shower chair and is raising mula for a scooter carrier we found used at a mobility store.
REDHEADER (Apr 11, 2007 8:02:14 PM)
Greetings and Salutations
gypsy (Apr 11, 2007 8:02:22 PM)
hi red
gypsy (Apr 11, 2007 8:02:35 PM)
no that not good barry :(
Smurfette (Apr 11, 2007 8:02:38 PM)
Suzy's not feeling any better? Poor gal.
REDHEADER (Apr 11, 2007 8:02:39 PM)
hi gypsy, how are things down under?
lost1112 (Apr 11, 2007 8:02:47 PM)
no I did not Barry how is she doing
gypsy (Apr 11, 2007 8:02:48 PM)
ok thanks red
Shar37 (Apr 11, 2007 8:02:48 PM)
Hi Red
barryc (Apr 11, 2007 8:02:53 PM)
that's cool, shar...they must really be behind you...great to have such wonderful support.
marciamellows (Apr 11, 2007 8:03:06 PM)
barry, I have been in contact with Corey. Unbeliebable how fast!
gypsy (Apr 11, 2007 8:03:07 PM)
how is ebony red ?
REDHEADER (Apr 11, 2007 8:03:08 PM)
Hiya Shar
REDHEADER (Apr 11, 2007 8:03:27 PM)
ebony has been a pain in the naughty bits today
gypsy (Apr 11, 2007 8:03:38 PM)
lol red
barryc (Apr 11, 2007 8:03:43 PM)
suzy is on a ventilator...they will putting on a trach tomorrow.... then rehab for a couple of months... it is really been tough on corey and his family.
REDHEADER (Apr 11, 2007 8:04:29 PM)
I have her secured in the bedroom at the present time, ahe doesn't yet know that the computer desk is off limits to kittens
lost1112 (Apr 11, 2007 8:04:33 PM)
my prayers go out to him and his whole family
marciamellows (Apr 11, 2007 8:04:37 PM)
barry, I thought that she was going to have to get a trach, a g-tube and a pace maker/defibrillator
Robyn-G (Apr 11, 2007 8:04:46 PM)
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PaRay (Apr 11, 2007 8:05:00 PM)
Hi Robyn.
lost1112 (Apr 11, 2007 8:05:05 PM)
hi Robyn how have you been
Robyn-G (Apr 11, 2007 8:05:07 PM)
Hi, I see lost is on tonight. Long time, no chat.
REDHEADER (Apr 11, 2007 8:05:14 PM)
I was recently switched from a c-pap to a bi-pap, and it is a whole lot more comfortable
Robyn-G (Apr 11, 2007 8:05:15 PM)
Hi everyone
Shar37 (Apr 11, 2007 8:05:21 PM)
In the last 3yrs I lost one parent in a freak accident and then 3 months later my Mom got cancer and 6 months after she passed away we found out about the MMD. So it's been pretty rough. Co workers can be awesome.
marciamellows (Apr 11, 2007 8:05:22 PM)
Hi Robyn, Before I forget, did your mother-in-law ever get tested?
barryc (Apr 11, 2007 8:05:24 PM)
hopefully, corey will be on line a little later today... he can give you more input... trach will be put in tomorrow.
REDHEADER (Apr 11, 2007 8:05:32 PM)
hello robyn
Shar37 (Apr 11, 2007 8:05:32 PM)
Hi Robyn\
lost1112 (Apr 11, 2007 8:05:33 PM)
it has been a while
Smurfette (Apr 11, 2007 8:05:39 PM)
Warren likes the bi-pap a lot better too.
gypsy (Apr 11, 2007 8:05:45 PM)
it would have been barry pass on my best wishes if you are talking to corey please
REDHEADER (Apr 11, 2007 8:05:48 PM)
yes it has, were u lost? lol
gypsy (Apr 11, 2007 8:05:54 PM)
glad it helped red
eeyore (Apr 11, 2007 8:05:55 PM)
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barryc (Apr 11, 2007 8:06:02 PM)
will do gypsy.... thanx
Robyn-G (Apr 11, 2007 8:06:05 PM)
Well Marcia, she went to her doctor and he said "i don't know if there is a test for that", so needless to say I equipped her with all the necessary info. to provide to her doctor.
gypsy (Apr 11, 2007 8:06:07 PM)
hi robyn
Robyn-G (Apr 11, 2007 8:06:19 PM)
I haven't heardy anything since then. I'll check in with her soon.
barryc (Apr 11, 2007 8:06:20 PM)
hi robyn
marciamellows (Apr 11, 2007 8:06:21 PM)
robyn, when is she going back?
marciamellows (Apr 11, 2007 8:06:40 PM)
lost, I know that you moved. Where did you move from and to>
Robyn-G (Apr 11, 2007 8:06:41 PM)
she did say she had a doctor's appt. today, but I am not sure if it is the same doctor.
Robyn-G (Apr 11, 2007 8:07:06 PM)
Welcome back Eeyore
marciamellows (Apr 11, 2007 8:07:11 PM)
eeyore, I know that you were on last week because I read the transcripts. Were you the new person with 1 child or two>
REDHEADER (Apr 11, 2007 8:07:15 PM)
it is wierd, I broke my glasses last week (Lenses survived, frame didn't), and now I cannot find one of the lenses. I turned my apt upside down and no luck
lost1112 (Apr 11, 2007 8:07:16 PM)
moved from vermont to kentucky
Robyn-G (Apr 11, 2007 8:07:45 PM)
Barry, why did I think that the May 19th gig was in Oregon and not S. Cal?
eeyore (Apr 11, 2007 8:07:47 PM)
thanks - yes I have two children
gypsy (Apr 11, 2007 8:07:51 PM)
hi eeyore
Smurfette (Apr 11, 2007 8:07:52 PM)
My baby niece is having an assessment done this weeks. She's in the "undiagnosed" stage of something that's causing her some trouble. I'm sure a lot of people here know what that's like.
marciamellows (Apr 11, 2007 8:08:07 PM)
I will be right back. Going to see if I can get Jeff on the chat. If I do, he is Mr.Mellows
eeyore (Apr 11, 2007 8:08:12 PM)
hi, gypsy
gypsy (Apr 11, 2007 8:08:36 PM)
bummer red does ebony hide things ?
Robyn-G (Apr 11, 2007 8:08:42 PM)
I got the newsletter in the mail, it's getting here a little late though because the label still has the old address.
marciamellows (Apr 11, 2007 8:08:57 PM)
eeyore, refresh my memory. How old are your children, are they affected and where do you live?
Robyn-G (Apr 11, 2007 8:09:06 PM)
I am a little discouraged each time I see a death of a member that is within a few years or so of Joe's age.
barryc (Apr 11, 2007 8:09:07 PM)
we are doing Oregon and then going to LA fri eve... Sat doing a MDA fundraiser... Terry will be talking about young people and living a full life with a disability. Julie and I will be talking about parenting young people with life long disabiities.
lost1112 (Apr 11, 2007 8:09:08 PM)
did you move robyn?
REDHEADER (Apr 11, 2007 8:09:11 PM)
Well, doctor Thornton took me off the Quinine Sulfate. i told him I didn't notice it doing much good. But since my prescription plan no longer covers Quinine, its all good
marciamellows (Apr 11, 2007 8:09:27 PM)
paray, don't you have robyn's new address?
Robyn-G (Apr 11, 2007 8:09:38 PM)
Ok, Barry, so Oregon is not a part of the book thing?
bette (Apr 11, 2007 8:09:38 PM)
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lost1112 (Apr 11, 2007 8:09:52 PM)
hi bette
Robyn-G (Apr 11, 2007 8:09:52 PM)
Yes, Lost, we moved in the midst of a power outage in December.
REDHEADER (Apr 11, 2007 8:10:01 PM)
Yes she does Gypsy, but I looked every where, under behind, on top, inside, no luck
gypsy (Apr 11, 2007 8:10:18 PM)
hi bette
PaRay (Apr 11, 2007 8:10:19 PM)
Robyn...EMail your new address to MDAASGchat@!aol.com
barryc (Apr 11, 2007 8:10:25 PM)
well, Oregon is also part of the book thing... Terry will be signing books...
lost1112 (Apr 11, 2007 8:10:29 PM)
I guess i have been gone for a while huh lol
Robyn-G (Apr 11, 2007 8:10:29 PM)
We are thrilled to be in our new home. We poured concrete last week for our new/used hot tub and our electrician is going to be by within a week to do the electrical part
Robyn-G (Apr 11, 2007 8:10:35 PM)
ok, thanks barry
bette (Apr 11, 2007 8:10:51 PM)
Hi all, glad I was able to get on.
gypsy (Apr 11, 2007 8:10:54 PM)
no good red
REDHEADER (Apr 11, 2007 8:10:59 PM)
hot tub, mmmm...... that sounds really nice
eeyore (Apr 11, 2007 8:11:02 PM)
I have two children - a girl thats ten and a boy thats five - both of them have CMMD and I also have MMD. We were all diagnosed 4 years ago a year after my son was born. I live in Northern NJ
REDHEADER (Apr 11, 2007 8:11:10 PM)
they are soooo relaxing
gypsy (Apr 11, 2007 8:11:17 PM)
hope trip goes well barry
barryc (Apr 11, 2007 8:11:25 PM)
thanx gypsy...
suziern (Apr 11, 2007 8:11:42 PM)
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REDHEADER (Apr 11, 2007 8:11:51 PM)
hi suziern
suziern (Apr 11, 2007 8:11:57 PM)
Hello all
Robyn-G (Apr 11, 2007 8:12:00 PM)
yeah, red, we're hoping that it will be relaxing for all of us
Smurfette (Apr 11, 2007 8:12:01 PM)
Eeyore, what led to the diagnosis? Was it your son?
Robyn-G (Apr 11, 2007 8:12:06 PM)
HI Suziern
Shar37 (Apr 11, 2007 8:12:07 PM)
Eeyore, have you heard of the MMD registry in the large hospital in NJ?
gypsy (Apr 11, 2007 8:12:10 PM)
hi suziern
Robyn-G (Apr 11, 2007 8:12:15 PM)
Hi Bette
suziern (Apr 11, 2007 8:12:16 PM)
Hello
suziern (Apr 11, 2007 8:12:22 PM)
any word on Suzy Glick?
suziern (Apr 11, 2007 8:12:30 PM)
I have not had a chance to call Corey for a few days
Smurfette (Apr 11, 2007 8:12:39 PM)
She's still in the hospital, Suzie.
suziern (Apr 11, 2007 8:12:53 PM)
Did they do a trach do you know? ICD/Pacemaker?
eeyore (Apr 11, 2007 8:12:59 PM)
Yes, my son was born "flopppy", but we didn't get a diagnosis until a year later (and a new Neurologist)
Smurfette (Apr 11, 2007 8:13:04 PM)
I think Barry said they were gonna do that tonight.
REDHEADER (Apr 11, 2007 8:13:04 PM)
saw my pcp today, i lost another 1/2 pound, and my nutritionist told me that if i reduce my caloric intake by 500 calories a day, i can lose 1 pound per week
suziern (Apr 11, 2007 8:13:26 PM)
I should try that red
Smurfette (Apr 11, 2007 8:13:29 PM)
That's frustrating, Eeyore. But I'm glad you at least know what's going on now.
gypsy (Apr 11, 2007 8:13:38 PM)
well done red
barryc (Apr 11, 2007 8:13:43 PM)
Here is something positive that just happens. I learned that some national park rangers do tours for people with accessibiity issues. Terry loves animals and dreams of working for the park service.... SOOO I booked a trip this July... we are going to Yellowstone and Grand Teton Parks... our park ranger with take us to favorite animal sitings... and much more... fishing in a lake in the Tetons... and float trip down Snake River... should be a blast.... I am sooooo glad it will be an accessible tour.
REDHEADER (Apr 11, 2007 8:13:46 PM)
which means in a little over a year i will be at my proper weight, around 150
Shar37 (Apr 11, 2007 8:13:46 PM)
Sorry I think that's at Rochester. Are they any drug trials or anything you've heard of Eeyore
Smurfette (Apr 11, 2007 8:14:12 PM)
That sounds amazing, Barry!
eeyore (Apr 11, 2007 8:14:13 PM)
Shar37 - I haven't heard about any registry in NJ - do you mean the clinic in Newark? The only registry I know about is in Rochester, NY
suziern (Apr 11, 2007 8:14:20 PM)
Yes, sounds great Barry
REDHEADER (Apr 11, 2007 8:14:38 PM)
Rochester, NY my home town, where i still live
Shar37 (Apr 11, 2007 8:15:01 PM)
Yes that's where I am talking about.
suziern (Apr 11, 2007 8:15:03 PM)
I took BillyDean out to Rochester several months ago redheader, to see Dr. Moxley for his second opinion
REDHEADER (Apr 11, 2007 8:15:25 PM)
only other place I lived was Weurzburg, West Germany, for 2 years
bette (Apr 11, 2007 8:15:25 PM)
Barry sounds great. We are looking for things like that the the group in LA can do. Do you know of anything?
barryc (Apr 11, 2007 8:15:34 PM)
tanya... to make things even MORE interesting... the park ranger said he would take us to ANY national park, for future years.... depending on our interests. I told him he may well show up in one of Terry's speeches... go accessible TOURS.
REDHEADER (Apr 11, 2007 8:15:37 PM)
I like Dr. Moxley
Smurfette (Apr 11, 2007 8:15:52 PM)
No kidding! Do they have a website?
eeyore (Apr 11, 2007 8:15:56 PM)
Shar 37 - no, I havent heard about any drug trials. They asked me for a study on sleepiness last year(?) but with two small kids, I couldn't leave for three days, plus eight hour travel time both ways
REDHEADER (Apr 11, 2007 8:15:58 PM)
and Dr. Thornton is cool too
vdoman (Apr 11, 2007 8:16:07 PM)
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suziern (Apr 11, 2007 8:16:13 PM)
I will be back in a few. I was at Riley Hospital last night till middle of the night with BillyDean, then home and went to work, exhausting day, night and day, haha. Anyway, be back in about 10 minutes....
REDHEADER (Apr 11, 2007 8:16:16 PM)
hi corey
Shar37 (Apr 11, 2007 8:16:20 PM)
We know sleepiness well here.
gypsy (Apr 11, 2007 8:16:22 PM)
hi vdoman
Robyn-G (Apr 11, 2007 8:16:31 PM)
suzie, what happened?
REDHEADER (Apr 11, 2007 8:16:36 PM)
yep, good old hypersomnolence
Smurfette (Apr 11, 2007 8:16:47 PM)
Is Julie going with you on the trip, Barry?
gypsy (Apr 11, 2007 8:16:56 PM)
so sorry to hear suzy has been having such a hard time vdoman
eeyore (Apr 11, 2007 8:17:04 PM)
Shar37 - what is your situation?
barryc (Apr 11, 2007 8:17:11 PM)
www.nationalparksociety.com
Shar37 (Apr 11, 2007 8:17:18 PM)
Hi Corey. How are you holding up?
vdoman (Apr 11, 2007 8:17:37 PM)
Hi Everyone hanging in there
bette (Apr 11, 2007 8:17:38 PM)
Cory, how is Suzie? I'm sorry I haven't called but she is our prayers and we add her to the temple list every Shabbat.
Wendy2 (Apr 11, 2007 8:17:41 PM)
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Wendy2 (Apr 11, 2007 8:17:56 PM)
HI
Shar37 (Apr 11, 2007 8:18:05 PM)
Eeyore, we are in DFW tX and my hubby Chris was dx last april with 437 repeats.
lost1112 (Apr 11, 2007 8:18:08 PM)
hi wendy
barryc (Apr 11, 2007 8:18:27 PM)
tanya... julie won't be going on this trip... my brother, from NYC, will join us. However, if all goes well, I will talk to the park ranger about a trip for Julie, too. Maybe Yosemite plus visiting our CA MMD friends.
REDHEADER (Apr 11, 2007 8:18:29 PM)
I picked up 2 new CDs on Friday. Niel Young's Greatest Hits, and STYX with The Contemporary Youth Orchestra
gypsy (Apr 11, 2007 8:18:36 PM)
hi wendy
Wendy2 (Apr 11, 2007 8:18:38 PM)
Hi lost long time no talk
vdoman (Apr 11, 2007 8:18:38 PM)
Tomorrow at 9 am Suz will have a Trach
REDHEADER (Apr 11, 2007 8:18:42 PM)
heya Wndy
mr.mellows (Apr 11, 2007 8:18:58 PM)
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gypsy (Apr 11, 2007 8:19:15 PM)
hi mr mellows
PaRay (Apr 11, 2007 8:19:20 PM)
Hi Jeff. (Mr. MM)
vdoman (Apr 11, 2007 8:19:25 PM)
Hi Jeff
Smurfette (Apr 11, 2007 8:19:28 PM)
Travel can be tough. Does Terry use a C-PAP, Barry? Will you have to drag that along with you?
Shar37 (Apr 11, 2007 8:19:33 PM)
Ah another Niel Young Fan.
REDHEADER (Apr 11, 2007 8:19:34 PM)
hello mr. mellows
barryc (Apr 11, 2007 8:19:37 PM)
bette... check out the web site... maybe I can talk to the park ranger about the CA youth support group, too.
REDHEADER (Apr 11, 2007 8:19:52 PM)
not a big fan Shar, but I like some of his stufff
eeyore (Apr 11, 2007 8:19:54 PM)
Shar37 - my son is the worst with 1500, my daughter has 800 which usually isnt congenital - we hit the Jackpot (: and I have 300
vdoman (Apr 11, 2007 8:20:15 PM)
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barryc (Apr 11, 2007 8:20:30 PM)
fortunately, Terry is not on a C-PAP... he uses AFO's and can walk some... we will also take our travel scooter on the national park trip.
REDHEADER (Apr 11, 2007 8:20:33 PM)
Ohio, Southern man, Cinammon Girl, Down By The River, Hey Hey My My
Wendy2 (Apr 11, 2007 8:20:34 PM)
I got a new phone with caller ID
Shar37 (Apr 11, 2007 8:20:45 PM)
It's a tough one. Is anyone taking that day time meds for energy, something like ritalin?
bette (Apr 11, 2007 8:20:48 PM)
Tjamls fpr tje je;[ wotj tje event name Jeff.
REDHEADER (Apr 11, 2007 8:20:50 PM)
caller ID is useful
bette (Apr 11, 2007 8:21:08 PM)
Thanks for the help with the events name.
vdoman (Apr 11, 2007 8:21:30 PM)
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Shar37 (Apr 11, 2007 8:21:34 PM)
RED those are some of my favorites too
REDHEADER (Apr 11, 2007 8:21:49 PM)
fingers got shifted, huh Bette lol
REDHEADER (Apr 11, 2007 8:22:18 PM)
found a cool video for "Ohio" on You Tube
vdoman (Apr 11, 2007 8:22:20 PM)
I hate digicht got bumped
barryc (Apr 11, 2007 8:22:27 PM)
w
gypsy (Apr 11, 2007 8:22:35 PM)
wb vdoman
Wendy2 (Apr 11, 2007 8:22:57 PM)
MY MDA support group is having a pot luch on may 4. It is a suporrt group for all forms of MD. But as you know different forms still have some of the same problems so it is usful to attend
barryc (Apr 11, 2007 8:23:01 PM)
welcome back corey,,, when a techie gets bumped, I really begin to wonder...
marciamellows (Apr 11, 2007 8:23:04 PM)
barry, that trip you are taking to the national parks sounds FANTASTIC!!!!!! and so Terry.
REDHEADER (Apr 11, 2007 8:23:10 PM)
hey corey, or any one, any more of us on Skype?
Shar37 (Apr 11, 2007 8:23:28 PM)
Hey bette they finally sent a letter saying they were going to schedule a hearing for Christopher for SSD. \
REDHEADER (Apr 11, 2007 8:23:48 PM)
yeah, when a techie gets bumped it's like "Danger Will Robinson, Danger!"
vdoman (Apr 11, 2007 8:23:50 PM)
We are waiing for Suzette to geta webcam and mic
barryc (Apr 11, 2007 8:23:55 PM)
thanx marcia.... now if terry could gamble (likes 21), he would like that too... maybe we will for fun in the eve... park ranger vs. terry
Smurfette (Apr 11, 2007 8:23:59 PM)
Suzie, are you back yet?
bette (Apr 11, 2007 8:24:18 PM)
Shar, that is great.
REDHEADER (Apr 11, 2007 8:24:45 PM)
Just saw Rocky Balboa (Rocky 6), Take The Lead, Miss Congeniality 2, and Mars Needs Women
Shar37 (Apr 11, 2007 8:24:53 PM)
Yes this has been going on for a while.
eeyore (Apr 11, 2007 8:24:59 PM)
I was on ritalyn and provigil for a while, but it only worked for a very short time, so I stopped. My daughter isnt sleepy - she has some learning disabilities in a half day self contained classroom, and takes PT, OT, speech and oral motor therapy, and my son still takes naps after school, and goes to bed a 8:00, so w think there may be something there, but not sure yet. He gets all services my daughter does, plus he is in a disabled preschool class, starting a special kindergarden next year.
barryc (Apr 11, 2007 8:25:02 PM)
jeff...how is the new van working out? have you gone on day trips just for fun?
REDHEADER (Apr 11, 2007 8:25:05 PM)
also, Grindhouse, Shooter and Ghost Rider
marciamellows (Apr 11, 2007 8:25:40 PM)
eeyore, I had to leave to help my husband get on. Did you say how old your children are and if they are affected. also, where do you live?
Smurfette (Apr 11, 2007 8:25:49 PM)
Eeyore, have your kids been tested for sleep apnea?
suziern (Apr 11, 2007 8:25:49 PM)
Hey, I am back, well not for long, BillyDean is coughing bad again, brb again.....
REDHEADER (Apr 11, 2007 8:26:17 PM)
Gypsy, I do not know if this is an Australian phrase or and English one, but just out of curiosity do you know what "..and bobs your uncle" means?
vdoman (Apr 11, 2007 8:26:18 PM)
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Smurfette (Apr 11, 2007 8:26:24 PM)
Suzie, Warren wants me to ask you how BillyDean is doing.
suziern (Apr 11, 2007 8:27:08 PM)
okay I am back again
gypsy (Apr 11, 2007 8:27:17 PM)
yes means something- like it will be right/ok
Robyn-G (Apr 11, 2007 8:27:17 PM)
eeyore, Janelle (15) tried provigil but it didn't seem to help her. Jessica (almost 12) isn't sleepy. She can sleep in kind of late if left undisturbed, but doesn't experience the daytime sleepiness that JAnelle does. Jess is in a self contained class also.
barryc (Apr 11, 2007 8:27:25 PM)
eeyore... robyn is very much involved in LD and school support for her wonderful kids... so is Billy Dean... my son, Terry, now is over 30... but can tell you about the many school experiences as well. It is a lot to contend with... but it can be done.
Wendy2 (Apr 11, 2007 8:27:29 PM)
I having aproblem walking down even very short inclines. Does any one have any idea how to make it easier
gypsy (Apr 11, 2007 8:27:32 PM)
brb
REDHEADER (Apr 11, 2007 8:27:33 PM)
Thanks, mate lol
suziern (Apr 11, 2007 8:27:34 PM)
Smurfette, tell Warren I ordered that mask he mentioned to me, it should be here in a few days
Robyn-G (Apr 11, 2007 8:27:48 PM)
suzie, tell us what is going on with billydean?
Smurfette (Apr 11, 2007 8:27:51 PM)
Cool! I hope it helps!
eeyore (Apr 11, 2007 8:28:18 PM)
My daughter is 10, my son is 5, 800, and 1500 - I'm 300 Smurfette - my kids haven't been tested yet - I had a sleep study last year I have sleep apnea if I sleep on my back (so I don't) and I also have narcolepsy, but I don't fall asleep just anywhere, I have to be laying down.
vdoman (Apr 11, 2007 8:28:20 PM)
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gypsy (Apr 11, 2007 8:28:21 PM)
back
Smurfette (Apr 11, 2007 8:28:32 PM)
Warren's gonna jump on for a bit, but I'll be lurking. Later everybody!
Smurfette (Apr 11, 2007 8:28:35 PM)
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vdoman (Apr 11, 2007 8:28:39 PM)
Got bumped
bette (Apr 11, 2007 8:29:01 PM)
Wendy, I have to use my walker with that.
phoenixw78 (Apr 11, 2007 8:29:01 PM)
(This user has entered Myotonic Chat Group)
suziern (Apr 11, 2007 8:29:03 PM)
Robyn - he has been sick. We went to Riley last night
REDHEADER (Apr 11, 2007 8:29:17 PM)
Thats interesting eeyore, I have sleeep apnea no matter how I am sleeping, I always sleep on my side
gypsy (Apr 11, 2007 8:29:30 PM)
hi phoenix
REDHEADER (Apr 11, 2007 8:29:39 PM)
heloo phoenix
REDHEADER (Apr 11, 2007 8:30:03 PM)
I know how to say Phoenix in Mandarin Chinese lol
gypsy (Apr 11, 2007 8:30:05 PM)
slopes are scarry wendy i just go really slowley
suziern (Apr 11, 2007 8:30:08 PM)
He is doing better today, we came home this morning, he slept till around noon while I worked
Wendy2 (Apr 11, 2007 8:30:20 PM)
I was tested for sleep apnea a while ago. They said i didn't have it. It is possible to develope it?
suziern (Apr 11, 2007 8:30:24 PM)
he is doing albuterol treatments with his nebulizer right now
phoenixw78 (Apr 11, 2007 8:30:36 PM)
Wendy have you tried walking backwards down the slopes?
suziern (Apr 11, 2007 8:30:49 PM)
We were supposed to leave for Victory Junction Nascar camp tomorrow am, and I had to call and cancel him. It is in North Carolina
phoenixw78 (Apr 11, 2007 8:30:49 PM)
you use different muscles when you are walking backwards
vdoman (Apr 11, 2007 8:30:57 PM)
Suzi what happened withBilly Dean
phoenixw78 (Apr 11, 2007 8:31:03 PM)
and yes you are able to develop sleep apnea
REDHEADER (Apr 11, 2007 8:31:05 PM)
it may be possible Wendy2, I am not too sure, but I know MMD can include respiratory ailments
suziern (Apr 11, 2007 8:31:12 PM)
They have Neuromuscular Disease week in June I think, he can maybe go then, this weekend was family weekend
gypsy (Apr 11, 2007 8:31:13 PM)
have you doen that phoenix does it help ?
barryc (Apr 11, 2007 8:31:19 PM)
red... so how did you pick up Mandarin? Part of your inquisitive nature, right?
lost1112 (Apr 11, 2007 8:31:23 PM)
backwards? wow i have enough trouble walking forward on flat ground lol
gypsy (Apr 11, 2007 8:31:30 PM)
as i find going up slpoes easier than down
Wendy2 (Apr 11, 2007 8:31:32 PM)
Hi Wrren. I'm afraid I might fall. I guess I could try it.
eeyore (Apr 11, 2007 8:31:38 PM)
barryc - yes, we are in the middle of two things with the schools - I think my daughter's spec ed teacher is less than competent, and my son is being evaluated for next year, but since is isn't completely verbal yet, I can be difficult knowing what he knows. We are also having a very hard time potty training him - did anyone else have that problem?
phoenixw78 (Apr 11, 2007 8:31:42 PM)
when I have really sore muscles I walk down the stairs backwards
REDHEADER (Apr 11, 2007 8:31:43 PM)
Also in my case, I am a Gemini, an Air sign, and Gemini are more prone to respiratory problems
phoenixw78 (Apr 11, 2007 8:31:52 PM)
especially when my quads are sore
phoenixw78 (Apr 11, 2007 8:32:22 PM)
eeyore have you tried the PPVT test?
phoenixw78 (Apr 11, 2007 8:32:26 PM)
for you son?
phoenixw78 (Apr 11, 2007 8:32:33 PM)
the PPVT stands for
REDHEADER (Apr 11, 2007 8:32:35 PM)
I cannot sit in my meditation position anymore because my Quads hurt
suziern (Apr 11, 2007 8:32:39 PM)
eeyore - BillyDean has accidents during the day often. I keep extra clothes at his school and he sleeps in a Goodnight, he is 12
vdoman (Apr 11, 2007 8:32:46 PM)
Took us until Kev was 4 yrs until he was clean
gypsy (Apr 11, 2007 8:32:49 PM)
ok thanks phoenix might even have a tset of that
gypsy (Apr 11, 2007 8:32:58 PM)
specially the stairs
phoenixw78 (Apr 11, 2007 8:32:59 PM)
peabody picture vocaulary test
eeyore (Apr 11, 2007 8:33:10 PM)
Phoeneix - what is PPVT?
marciamellows (Apr 11, 2007 8:33:17 PM)
suzette, why were you at the hospital with Billy Dean last night?
REDHEADER (Apr 11, 2007 8:33:18 PM)
My hamstrings and calves are fine, just bad quads
phoenixw78 (Apr 11, 2007 8:33:18 PM)
see my last thing
gypsy (Apr 11, 2007 8:33:27 PM)
no good red
phoenixw78 (Apr 11, 2007 8:34:02 PM)
I really like the PPVT I think it's fun but I'm a geek or so I've been told
REDHEADER (Apr 11, 2007 8:34:20 PM)
well, part of my daily exercise regemin is stretching, guesss i will have to work the quads harder'
gypsy (Apr 11, 2007 8:34:26 PM)
hips are the worse but whole legs are are getting pretty bad
phoenixw78 (Apr 11, 2007 8:34:36 PM)
how do you streatch your quads?
REDHEADER (Apr 11, 2007 8:34:40 PM)
My left hip is getting bad
phoenixw78 (Apr 11, 2007 8:34:53 PM)
there are streatches for every part of you body
gypsy (Apr 11, 2007 8:34:54 PM)
been a bit slack with my streches do you find everyday helps red ?
Wendy2 (Apr 11, 2007 8:34:57 PM)
For me it is knees and calves
barryc (Apr 11, 2007 8:34:59 PM)
corey.... did you ever get that vibrator you ordered on line?
REDHEADER (Apr 11, 2007 8:35:01 PM)
do u know what a Hurdlers Stretch is?
phoenixw78 (Apr 11, 2007 8:35:06 PM)
yes
phoenixw78 (Apr 11, 2007 8:35:21 PM)
that tweaks your knee there are better ones
gypsy (Apr 11, 2007 8:35:34 PM)
no red
vdoman (Apr 11, 2007 8:35:37 PM)
Yes I had to send him a check not here yet
Shar37 (Apr 11, 2007 8:35:41 PM)
Well everyone Chris says Hi. But he is trying to stay on a day schedule since he has a 730a flight on saturday to go visit his friend in Oklahoma, so he took an ambien. Signing off now my pain level is reaching the max need to go to bed. See you later.
REDHEADER (Apr 11, 2007 8:35:41 PM)
That will work your quads if u lay back while in the position
gypsy (Apr 11, 2007 8:35:44 PM)
not buy that name anyway
vdoman (Apr 11, 2007 8:36:00 PM)
Bye Shari
gypsy (Apr 11, 2007 8:36:09 PM)
night shar tc
marciamellows (Apr 11, 2007 8:36:22 PM)
phoenixw78, are you new to our chat? Could you fill me in a little about you?
suziern (Apr 11, 2007 8:36:34 PM)
that is warren
REDHEADER (Apr 11, 2007 8:36:34 PM)
sit on the floor with on leg out straight and the other tucked under/behind you, so you look like you are jumoing a hurdle
Wendy2 (Apr 11, 2007 8:36:40 PM)
I sa a PT at myb last docyots appointment she told me to ride an excersise bicycle. I do't think i have the strenght in my legs to even push the pedals
Shar37 (Apr 11, 2007 8:36:51 PM)
Bye Corey take care...tell Suzi Chris and Chiron say Hi.
vdoman (Apr 11, 2007 8:36:52 PM)
MM Phoenix isWarren
gypsy (Apr 11, 2007 8:36:59 PM)
ok thanks red think tha tmight be beyond me will see
Shar37 (Apr 11, 2007 8:37:00 PM)
Bye all
Shar37 (Apr 11, 2007 8:37:06 PM)
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phoenixw78 (Apr 11, 2007 8:37:12 PM)
the best way to streatch your quads is to grab your foot with the same hand as foot and pull the foot closer to your butt
eeyore (Apr 11, 2007 8:37:25 PM)
Unfortunately, I don't think the shcool system has that type of testing - these verbally handicaps have really just been getting "popular" for lack of a beeter word, in town. Theyve gone from 15 kids in disabled classes to 70 something in two years from two small classes to 5 large ones
REDHEADER (Apr 11, 2007 8:37:33 PM)
If I can get a pic of me doing the stretch, i will post it in the photo album
gypsy (Apr 11, 2007 8:37:45 PM)
i don't have problesm with exercise bike as long ait it's on a low restance
phoenixw78 (Apr 11, 2007 8:37:49 PM)
Marcia Smurfette is my better half
suziern (Apr 11, 2007 8:38:00 PM)
BillyDean's special class only has 7 kids
gypsy (Apr 11, 2007 8:38:20 PM)
yes know that one phoenix but cant balance or reach foot anymore
eeyore (Apr 11, 2007 8:38:27 PM)
Danny's has twelve on a good day
REDHEADER (Apr 11, 2007 8:38:29 PM)
by the way corey, I lost a lot of Data last week when my computer crashed, can u send me the address for the photo album again?
Robyn-G (Apr 11, 2007 8:38:31 PM)
Jessicas class has about 10
phoenixw78 (Apr 11, 2007 8:38:39 PM)
what about sitting on your knees?
vdoman (Apr 11, 2007 8:38:46 PM)
Ok Red
gypsy (Apr 11, 2007 8:38:47 PM)
no not that either
barryc (Apr 11, 2007 8:38:54 PM)
eeyore... there are tests available using non-verbal problems, that may help... ask the psychologist about them.
eeyore (Apr 11, 2007 8:38:59 PM)
How old is Jessica? how is she affected?
REDHEADER (Apr 11, 2007 8:39:01 PM)
That is the meditation position I can't do anynore phoenix
phoenixw78 (Apr 11, 2007 8:39:11 PM)
ok gotcha
REDHEADER (Apr 11, 2007 8:39:18 PM)
thanx corey
gypsy (Apr 11, 2007 8:39:23 PM)
was going to try lieing on stomach and getting a towel around foot to see if that worked
REDHEADER (Apr 11, 2007 8:39:36 PM)
hey, creative
phoenixw78 (Apr 11, 2007 8:39:47 PM)
have you tried using a wall to balance?
gypsy (Apr 11, 2007 8:39:51 PM)
can you still sit cross leged red ?
marciamellows (Apr 11, 2007 8:40:01 PM)
eeyore, Are you interested in receiving a chat reminder or receiving our FREE publication called "eaching Out
gypsy (Apr 11, 2007 8:40:14 PM)
hanging on for dear life doesn't help :(
eeyore (Apr 11, 2007 8:40:16 PM)
The psychologist isn't trained in non verbal testing - my son's case manager is using a partial non verbal (where needed) but I'm not sure how proficient she is with them
Wendy2 (Apr 11, 2007 8:40:22 PM)
cross legged haha yeah right!
REDHEADER (Apr 11, 2007 8:40:29 PM)
I dug out my old (1983) Chuck Norris Fitness System book, gonna try some of the stuff in that again, I know I can't do cover to cover like I used to
phoenixw78 (Apr 11, 2007 8:40:44 PM)
the PPVT requires the examinee to point to pictures
REDHEADER (Apr 11, 2007 8:40:46 PM)
yes i can Gypsy
marciamellows (Apr 11, 2007 8:41:14 PM)
Let me try that again. eeyore, are you interest in receiving a chat reminder or receiving our FREE publication called "Reaching Out" which has a lot of valuable MMD info in it? Also, are you aware that Barry's son Terry wrote a fabulous book about growing up with MMD?
vdoman (Apr 11, 2007 8:41:16 PM)
Kevin was not potty trained until he was 4 was a bedwetter until urologist gave a nasal spray that stopped his bedwetting in one day
phoenixw78 (Apr 11, 2007 8:41:19 PM)
it tests their verbal without them saying anything
gypsy (Apr 11, 2007 8:41:20 PM)
you many still be able to do some or addapt some red
Wendy2 (Apr 11, 2007 8:41:30 PM)
Cross legged always hurt me. Even before i knew I has MMD
barryc (Apr 11, 2007 8:41:40 PM)
eeyore...if the psychologist is not qualified to do non-verbal testing, he/she missed a lot in grad school!!!
gypsy (Apr 11, 2007 8:42:02 PM)
i find that cross leg helps to strech some of my muscles
REDHEADER (Apr 11, 2007 8:42:03 PM)
I get up a lot slower than i used to from the cross legged position tho lol ;)
eeyore (Apr 11, 2007 8:42:07 PM)
No , I wasnt aware, and sure - I'd like to get them - it sounds great
gypsy (Apr 11, 2007 8:42:18 PM)
bummer don't we all red :(
phoenixw78 (Apr 11, 2007 8:42:24 PM)
eeyore you might want to check his credentials
REDHEADER (Apr 11, 2007 8:42:31 PM)
maybe I should do the Butterfly Strech
PaRay (Apr 11, 2007 8:42:33 PM)
eeyore...Send your postal name and address to MDAASGchat@aol.com
Wendy2 (Apr 11, 2007 8:42:43 PM)
A least you can stiil get up Red:)
suziern (Apr 11, 2007 8:42:44 PM)
Corey, how are you doing?
suziern (Apr 11, 2007 8:42:50 PM)
Did you all ever get those blankets?
suziern (Apr 11, 2007 8:42:59 PM)
They were mailed on 4/2 I think
bette (Apr 11, 2007 8:43:00 PM)
Does anyone have a suggestion for getting rid of a cold fast? I have a sore throat that I know is going to turn into a cold and I have no time to be sick until the 23rd of the monty.
phoenixw78 (Apr 11, 2007 8:43:01 PM)
I'm working on a bachelors degree and I just had a big presentation about PPVT today
phoenixw78 (Apr 11, 2007 8:43:13 PM)
Bette
gypsy (Apr 11, 2007 8:43:19 PM)
sorry bette
phoenixw78 (Apr 11, 2007 8:43:28 PM)
take cold eeze and I've heard echinacea works
REDHEADER (Apr 11, 2007 8:43:39 PM)
no clue Bette, just lots of fluids and plenty of rest
Wendy2 (Apr 11, 2007 8:43:40 PM)
Warren where do you find the energy
vdoman (Apr 11, 2007 8:43:46 PM)
Yes I got the blankets they are beautiful Suzy has one on her now
gypsy (Apr 11, 2007 8:43:47 PM)
gargling soluable asprin can sometimes help withthe troat if you are able to do that
phoenixw78 (Apr 11, 2007 8:43:56 PM)
also my family will take a dose of acidophilos and a dose of Vitamin C every hour
eeyore (Apr 11, 2007 8:44:00 PM)
Bette - I use coldeze - they do help cut down the duration of the cold
REDHEADER (Apr 11, 2007 8:44:08 PM)
echinacea is really good for the immune system
phoenixw78 (Apr 11, 2007 8:44:15 PM)
I don't know Wendy I just do
barryc (Apr 11, 2007 8:44:40 PM)
terry goes to bed and rests and drinks lots of liquids... over the counter meds also used... Acapella also, if there is even the slightest evidence of chest congestion (THANK YOU RAY!)
phoenixw78 (Apr 11, 2007 8:44:40 PM)
bette you could gargle with water and cayanne pepper
phoenixw78 (Apr 11, 2007 8:45:02 PM)
you'll cough it up but it will get rid of the sore throat
marciamellows (Apr 11, 2007 8:45:02 PM)
Someone from our HMO (Kaiser) came out yesterday and put cinder blocks under our bed to raiser it higher. Jeff was having trouble getting up out of bed. Worked like a charm this morning. Also, they are sending someone out tomorrow to install shower hoses in both showers. They also sent someone out to help him shower, dress and shave yesterday. She will come back tomorrow and 2 times next week. They are also sending out an occupational therapist and a physical therapist. They may install a trapeze bar in the bedroom if his arms are strong enough.
Wendy2 (Apr 11, 2007 8:45:08 PM)
cayenne pepper?????
eeyore (Apr 11, 2007 8:45:12 PM)
I may have been mixed up - it may just be for non verbal IQ tests - is there a difference?
REDHEADER (Apr 11, 2007 8:45:12 PM)
taking a shot of Nyquil before bed helps too
phoenixw78 (Apr 11, 2007 8:45:22 PM)
it's horrible but my dad swears by it
marciamellows (Apr 11, 2007 8:45:50 PM)
phoenix, what are you majoring in?
phoenixw78 (Apr 11, 2007 8:45:57 PM)
Special Education
gypsy (Apr 11, 2007 8:46:01 PM)
hope all tha thelps marcia
REDHEADER (Apr 11, 2007 8:46:04 PM)
but some people can't handle Nyquil it is too strong for them
barryc (Apr 11, 2007 8:46:17 PM)
marsha... that sounds terrific... Jeff must be feeling like a prince.
phoenixw78 (Apr 11, 2007 8:46:33 PM)
Bette have you ever had a hot totty?
Wendy2 (Apr 11, 2007 8:46:44 PM)
The thing i cany handle is Alkaselzter
REDHEADER (Apr 11, 2007 8:46:45 PM)
I have a question. Does anyone else out there use T-Gel or anything similar to wash their hair?
bette (Apr 11, 2007 8:46:59 PM)
Thanks everyone.
Wendy2 (Apr 11, 2007 8:47:02 PM)
can't
bette (Apr 11, 2007 8:47:54 PM)
Never had a hot totty. We dib;t drubj akcigik,
gypsy (Apr 11, 2007 8:47:58 PM)
never hear of it red waht is it ?
phoenixw78 (Apr 11, 2007 8:48:08 PM)
umm...what did you say bette?
gypsy (Apr 11, 2007 8:48:09 PM)
but have big problesm washing my hair now
bette (Apr 11, 2007 8:48:15 PM)
Never had a hot totty. We don't drink alcohol.
Wendy2 (Apr 11, 2007 8:48:27 PM)
Well I'd better go have to work tomorrow.\
gypsy (Apr 11, 2007 8:48:34 PM)
bye wendy tc
phoenixw78 (Apr 11, 2007 8:48:39 PM)
ok well if you don't drink alcohol then you won't drink a hot totty
barryc (Apr 11, 2007 8:48:40 PM)
eeyore... I am a psychologist... there are a number of non-verbal tests... some for IQ that are quite good... but some for specific skills... such as understanding social relationships... recognizing sounds and forms... and so forth.
REDHEADER (Apr 11, 2007 8:48:47 PM)
my friend has psoriasis or something like that and i suggested T-Gel (Therapeutic shampoo0 and he looked at me like I grew a third eye or something and said how can you handle the sell
vdoman (Apr 11, 2007 8:48:53 PM)
by e wendy
phoenixw78 (Apr 11, 2007 8:49:00 PM)
there is like a vinegar and honny thing or something like that
Wendy2 (Apr 11, 2007 8:49:01 PM)
Wreen till your family hi for me. Tell mike i will try to E-mail him soon
REDHEADER (Apr 11, 2007 8:49:12 PM)
smell
phoenixw78 (Apr 11, 2007 8:49:34 PM)
will do wendy
REDHEADER (Apr 11, 2007 8:49:35 PM)
I just wondered if anyone else tried it and if the smell bothered anyone else
Wendy2 (Apr 11, 2007 8:49:42 PM)
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eeyore (Apr 11, 2007 8:50:01 PM)
His social worker is going to be testing him soon and she said she would use the non-verbal tests where is seems he needs them.
REDHEADER (Apr 11, 2007 8:50:31 PM)
If u are intereseted, the name is Neutrogena T-Gel. It is used for all sorts of scalp problems (like dandruff, which I have)
eeyore (Apr 11, 2007 8:50:31 PM)
Social worker - I meant case manager
phoenixw78 (Apr 11, 2007 8:50:34 PM)
eeyore barry is a really good psychologist too
barryc (Apr 11, 2007 8:50:59 PM)
ask the social worker what skills she is testing for (relative to your child's learning needs)... then ask what non-verbal tests are being used to assess those skills.
gypsy (Apr 11, 2007 8:51:21 PM)
ok thanks red i have problesm but i think it 's mosty becsue i can't get my hair andhead washed well enough
barryc (Apr 11, 2007 8:51:24 PM)
thanx warren!
REDHEADER (Apr 11, 2007 8:51:46 PM)
that is why I have my head shaved lol ;)
phoenixw78 (Apr 11, 2007 8:51:53 PM)
but I like the ppvt because it has a high realiability and it can be used for anyone from 2 and a half months to 90 years plus
gypsy (Apr 11, 2007 8:52:06 PM)
lol red been debating that myslef sometimes
phoenixw78 (Apr 11, 2007 8:52:12 PM)
just telling the truth barry
barryc (Apr 11, 2007 8:52:19 PM)
warren... you are right on the mark.... learning a lot in school!
REDHEADER (Apr 11, 2007 8:52:25 PM)
ha ha ha, the Britney Spears route
gypsy (Apr 11, 2007 8:52:33 PM)
:)
Robyn-G (Apr 11, 2007 8:52:35 PM)
Jessica has decided that she really likes having short hair. it makes it a lot easier to wash, etc.
suziern (Apr 11, 2007 8:52:50 PM)
I am in a yahoo group with Lisa, Kayla's mom for Congenital onset MMD kids and someone emailed me and asked me if BillyDean was non verbal.
REDHEADER (Apr 11, 2007 8:52:55 PM)
short hair is easier to manage
phoenixw78 (Apr 11, 2007 8:53:05 PM)
barry you have another non-verbal test you would reccomend besides PPVT?
gypsy (Apr 11, 2007 8:53:06 PM)
my hair is already pretty short but still hard to wahs and comb
barryc (Apr 11, 2007 8:53:12 PM)
I have short hair too, due to genetics! bald gene... glad I have any hair at all.
suziern (Apr 11, 2007 8:53:13 PM)
Are a lot of Congenital kids non verbal?
eeyore (Apr 11, 2007 8:53:21 PM)
Sure - i think they are doing a complete test, just to get an idea of where he is, all around - he couldn't be tested when he entered the program - he wouldnt sit still, and didn;'t listen very well - to me, it seems like he is about 2 years behind where he should be
gypsy (Apr 11, 2007 8:53:24 PM)
:) barry
suziern (Apr 11, 2007 8:53:31 PM)
Dr. Moxley told us BillyDean is congenital however he has always talked
REDHEADER (Apr 11, 2007 8:53:53 PM)
well, about a year ao when my hair was still part way down my bck, it was tuff to wash
Robyn-G (Apr 11, 2007 8:53:56 PM)
interesting suzie, dr. moxley said b.d. is congenital yet he got it from his dad?
gypsy (Apr 11, 2007 8:54:08 PM)
would have been red
vdoman (Apr 11, 2007 8:54:16 PM)
Kev was a late talker and doesnot shut up now
Robyn-G (Apr 11, 2007 8:54:19 PM)
billydean sound similar to jessica cognitively but more similar to janelle physically
REDHEADER (Apr 11, 2007 8:54:22 PM)
hated getting knots in it
gypsy (Apr 11, 2007 8:54:23 PM)
had to get mine cut over 12 years ago now
suziern (Apr 11, 2007 8:54:32 PM)
yes, although his dad says he doesn't have it, but his CTG repeat is 198
barryc (Apr 11, 2007 8:54:37 PM)
eeyore... is the social worker keeping a behavior record of her observations? School behavior should be added to the assessment, for a total picture.
Robyn-G (Apr 11, 2007 8:54:51 PM)
i think there is an onset that is somewhere a between congenital and childhood
suziern (Apr 11, 2007 8:54:51 PM)
MMD is confusing
phoenixw78 (Apr 11, 2007 8:54:54 PM)
who's repeats are 198?
REDHEADER (Apr 11, 2007 8:54:57 PM)
so, now it is the cue ball deal
Robyn-G (Apr 11, 2007 8:55:05 PM)
yes it is, i think we are still learning about it everyday, as are the docs
gypsy (Apr 11, 2007 8:55:15 PM)
:) red
suziern (Apr 11, 2007 8:55:21 PM)
BillyDean's biological dad's are
phoenixw78 (Apr 11, 2007 8:55:31 PM)
that's not very high at all
REDHEADER (Apr 11, 2007 8:55:31 PM)
;p
REDHEADER (Apr 11, 2007 8:55:41 PM)
;D
vdoman (Apr 11, 2007 8:55:45 PM)
I had to educate Suzys Docs on MMD
REDHEADER (Apr 11, 2007 8:55:45 PM)
:D
suziern (Apr 11, 2007 8:55:46 PM)
no it isn't, so that is good
phoenixw78 (Apr 11, 2007 8:56:01 PM)
my dad's repeats are right around one hundred and the only symptom he has is cataracts
eeyore (Apr 11, 2007 8:56:16 PM)
both my kids are congenital , and they were (are) delayed in speaking, but they both do.. Katie started at 3 and Danny is pretty recent ( tha past year) not really making up for lost time, though
vdoman (Apr 11, 2007 8:56:19 PM)
Suzi ar you home now I ried to call you
bette (Apr 11, 2007 8:56:26 PM)
Cory, is you mom any help?
phoenixw78 (Apr 11, 2007 8:56:32 PM)
they even put a needle in his hand and tried to get his muscles to do the myotonia thing and it didn't do anything
suziern (Apr 11, 2007 8:56:38 PM)
my repeats are 5 and 5, but his dad is still convinced I passed it to BillyDean
vdoman (Apr 11, 2007 8:56:41 PM)
Yes
REDHEADER (Apr 11, 2007 8:56:43 PM)
I am so looking forward the the 24th
suziern (Apr 11, 2007 8:56:50 PM)
yes, I am home, the kids have the phone
phoenixw78 (Apr 11, 2007 8:56:59 PM)
you have 5 repeats???
suziern (Apr 11, 2007 8:57:02 PM)
I can call you Corey after I help BillyDean
eeyore (Apr 11, 2007 8:57:05 PM)
Yes - they have been sitting in on classes, and have reports from the teacher and aides.
bette (Apr 11, 2007 8:57:25 PM)
What is the 24th?
vdoman (Apr 11, 2007 8:57:29 PM)
Call me on home phone
phoenixw78 (Apr 11, 2007 8:57:41 PM)
suzie you have 5 repeats???
REDHEADER (Apr 11, 2007 8:57:45 PM)
I go see the play Monty Python's S[amalot
REDHEADER (Apr 11, 2007 8:57:50 PM)
Spamalot
suziern (Apr 11, 2007 8:57:52 PM)
Hey, I have to run, BillyDean needs me, I will catch you all next week, oh yes, I Have 5 and 5.
REDHEADER (Apr 11, 2007 8:57:53 PM)
:D
suziern (Apr 11, 2007 8:57:58 PM)
sorry I have to run, goodnight all
REDHEADER (Apr 11, 2007 8:58:03 PM)
g'nite
phoenixw78 (Apr 11, 2007 8:58:07 PM)
you didn't pass it on to your son
suziern (Apr 11, 2007 8:58:07 PM)
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gypsy (Apr 11, 2007 8:58:08 PM)
bye suziern tc
marciamellows (Apr 11, 2007 8:58:31 PM)
phoenixw78, my middle daughter got DNA tested when she got married and was ready to have children. She only had 11 repeats and has 2 healthy children.
vdoman (Apr 11, 2007 8:58:31 PM)
Got to eat dinner Bye
REDHEADER (Apr 11, 2007 8:58:38 PM)
well, i am gonna go too, ttfn
REDHEADER (Apr 11, 2007 8:58:42 PM)
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Robyn-G (Apr 11, 2007 8:58:42 PM)
warren, your dad said his was around 99, which when looking at joe's lab work it says greater than 99 and i have since read that 99 is where they consider you a full mutation, so i am not sure that 99 is his number. i think it may be that they just marked it at that place cause at that point they had a diagnosis.
gypsy (Apr 11, 2007 8:58:48 PM)
night vdoman tc
vdoman (Apr 11, 2007 8:58:58 PM)
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phoenixw78 (Apr 11, 2007 8:59:04 PM)
yeah below 50 means you don't have MMD
Robyn-G (Apr 11, 2007 8:59:11 PM)
yes, we all will have repeats. it's just that someone without mmd has around 35 or less
Robyn-G (Apr 11, 2007 8:59:19 PM)
maybe its 50
phoenixw78 (Apr 11, 2007 9:00:04 PM)
My dad had a DNA test and his are 100 I think but I'm 99% sure it's right about 100
marciamellows (Apr 11, 2007 9:00:19 PM)
barry, how is Julie doing with her AFO's?
eeyore (Apr 11, 2007 9:00:31 PM)
My sister has 100 repeats and no symptoms - the doc also said she may never, but she is trying to have kids and was afraid to pass it, so she is doing in vitro with no luck so far.
Robyn-G (Apr 11, 2007 9:00:50 PM)
how old is your sister, eeyore?
barryc (Apr 11, 2007 9:00:52 PM)
the number of repeats are indicative of the severity of MMD, but there is lots of variation,,,, especially for mid range repeats... very few repeats means minimal symptoms... very high repeats means more like problems... but mid range is not so clear.
phoenixw78 (Apr 11, 2007 9:00:53 PM)
how old is your sister?
eeyore (Apr 11, 2007 9:01:04 PM)
She was 36 yesterday
Robyn-G (Apr 11, 2007 9:01:08 PM)
thanks barry, i think you are right
Robyn-G (Apr 11, 2007 9:01:17 PM)
there is so much we don't know
phoenixw78 (Apr 11, 2007 9:01:22 PM)
my dad's cataracts didn't show up until he was in his late 40's
phoenixw78 (Apr 11, 2007 9:01:36 PM)
and that is the only symptom he has ever had
phoenixw78 (Apr 11, 2007 9:02:05 PM)
but your sister is doing it the good way being smart
bette (Apr 11, 2007 9:02:12 PM)
Jow old is your dad now?
phoenixw78 (Apr 11, 2007 9:02:25 PM)
from what I've been told if the mother passes it on it is more severe
Robyn-G (Apr 11, 2007 9:02:37 PM)
warren, tell yoru parents hi from joe and robyn. we really enjoyed meeting them
Robyn-G (Apr 11, 2007 9:02:42 PM)
please
phoenixw78 (Apr 11, 2007 9:02:46 PM)
will do
barryc (Apr 11, 2007 9:02:48 PM)
what we don't know about MMD
Robyn-G (Apr 11, 2007 9:02:50 PM)
thank you
eeyore (Apr 11, 2007 9:02:55 PM)
I was hoping to find other people with similar repeats , to see what I can expect, but I've realized that there really is no way since everyone is so different
Robyn-G (Apr 11, 2007 9:03:14 PM)
what barry?
phoenixw78 (Apr 11, 2007 9:03:25 PM)
if you take my sister who has over 500 repeats and the only symptom she has is daytime sleepiness
Robyn-G (Apr 11, 2007 9:03:40 PM)
true eeyore, we really don't know since there is such a variation from person to person
phoenixw78 (Apr 11, 2007 9:03:48 PM)
so the repeats are not and indicator of what will happen to you
Robyn-G (Apr 11, 2007 9:03:52 PM)
wow, warren, that is interesting about your sister
gypsy (Apr 11, 2007 9:04:03 PM)
night all thanks for the chat tc :)
Robyn-G (Apr 11, 2007 9:04:08 PM)
night gypsy
eeyore (Apr 11, 2007 9:04:13 PM)
My repeats are at 300, and I'm sleepy and my calf muscles have atrophied - nothing major
phoenixw78 (Apr 11, 2007 9:04:20 PM)
and it really sucks because MMD can be very random one night good another night bad
phoenixw78 (Apr 11, 2007 9:04:26 PM)
no rhyme or reason
eeyore (Apr 11, 2007 9:04:31 PM)
I just can't wear high heels anymore
Robyn-G (Apr 11, 2007 9:04:34 PM)
yes warren, right again, that is so frustrating
gypsy (Apr 11, 2007 9:04:49 PM)
haven't been able to do that for years eeyore
gypsy (Apr 11, 2007 9:05:03 PM)
only a few pair of shoes i can walk in at all now
phoenixw78 (Apr 11, 2007 9:05:13 PM)
the only way I have ever been able to gain any muscle mass
marciamellows (Apr 11, 2007 9:05:27 PM)
barry, how is Julie doing with her AFO's?
eeyore (Apr 11, 2007 9:05:33 PM)
Yes - I've noticed after a big party it takes a good week to recover
barryc (Apr 11, 2007 9:05:36 PM)
sorry... julie distracted me... what I meant... what we don't don't know about MMD is still a lot, but we are SO MUCH closer today than 10 years ago. I am convinced the next 10 years will see major breakthroughs. And repeats is the least of the story.
phoenixw78 (Apr 11, 2007 9:05:52 PM)
was I took creotine MethoxyPro and danced 5 to 6 times a aweek and lifted weaight 3 or more times a week
bette (Apr 11, 2007 9:05:54 PM)
I was fine this morning until I tried to pull a pair of pants out of the closet then I fell and have a small cradk in my middle toe. Thank goodness I still had the walking boot from the last fall. Oh well, that is how it goes.
eeyore (Apr 11, 2007 9:06:18 PM)
I pretty much live in my new balance sneakers, but I do have a very small heel that I try when I have to dress up
gypsy (Apr 11, 2007 9:06:30 PM)
that's no good bette :(
PaRay (Apr 11, 2007 9:07:01 PM)
eeyore...Send your postal name and address to MDAASGchat@aol.com and we will put you on the news letter and chat reminder list.
barryc (Apr 11, 2007 9:07:06 PM)
julie is getting a little stronger in standing up with AFO's with less support from me and her personal assistant. She is walking with them with our assistance. I am still hoping she will be able to walk... but it will take even more practice, practice.
gypsy (Apr 11, 2007 9:07:30 PM)
glad she is making progress barry
eeyore (Apr 11, 2007 9:07:48 PM)
Thanks PaRay, I will
bette (Apr 11, 2007 9:07:50 PM)
I'm sure Julie will make it bit by bit.
barryc (Apr 11, 2007 9:07:58 PM)
bette... sorry to hear you fell... boy, do we all know that gig!!!
barryc (Apr 11, 2007 9:08:23 PM)
thanx bette... I will read you comment to her now. She is nearby.
marciamellows (Apr 11, 2007 9:08:33 PM)
eeyore, are you familiar with the books that Barry's son Terry wrote?
bette (Apr 11, 2007 9:08:34 PM)
Barry, do you think we can seet it to music and put in on Broadway?
eeyore (Apr 11, 2007 9:08:54 PM)
No, I'm not marciamellows.
marciamellows (Apr 11, 2007 9:09:13 PM)
Barry, tell eeyore about the book.
Robyn-G (Apr 11, 2007 9:09:15 PM)
anyone know much about the production for this years fundraiser, i.e. entertainment?
gypsy (Apr 11, 2007 9:09:21 PM)
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marciamellows (Apr 11, 2007 9:09:33 PM)
Robyn, the play will be "Kiss Me Kate".
bette (Apr 11, 2007 9:09:35 PM)
Robyn, it's Kiss Me Kate.
Robyn-G (Apr 11, 2007 9:10:08 PM)
yeah, but what is Kiss Me Kate?
barryc (Apr 11, 2007 9:10:12 PM)
eeyore... Terry wrote a book about reaching for a full life with MMD... it is about his journey and wisdom learning how to deal with medical doctors, teachers, friends, a job, and much more. If you want to learn about the book, you can go to several web sites. Just email me:
phoenixw78 (Apr 11, 2007 9:10:15 PM)
oh by the way it's my mom's b-day today
Robyn-G (Apr 11, 2007 9:10:22 PM)
happy birthday ann!
barryc (Apr 11, 2007 9:10:23 PM)
barry.cohen@verizon.net
PaRay (Apr 11, 2007 9:10:36 PM)
Barry..A new model Acapella Dual came out that flutters and nebulizes at the same time. Got one today but haven't tryed it yet.
marciamellows (Apr 11, 2007 9:10:36 PM)
HAPPY BIRTHDAY ANN!!!!!!
bette (Apr 11, 2007 9:10:56 PM)
Happy Birthday Ann
Robyn-G (Apr 11, 2007 9:10:59 PM)
Goodnight everyone!
marciamellows (Apr 11, 2007 9:11:04 PM)
paRay, is there a website for the new Acapella Dual?
Robyn-G (Apr 11, 2007 9:11:10 PM)
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barryc (Apr 11, 2007 9:11:16 PM)
RAY... PLEASE let us know how it works. And then tell us how you got it... I assume with a RX
eeyore (Apr 11, 2007 9:11:37 PM)
Goodnight, everyone - i'll talk to you all next week
PaRay (Apr 11, 2007 9:11:44 PM)
Barry..got it on EBay. No Rx
barryc (Apr 11, 2007 9:12:02 PM)
WOW... ray you never fail to amaze me.
eeyore (Apr 11, 2007 9:12:27 PM)
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barryc (Apr 11, 2007 9:12:46 PM)
time for me to sign off too... my best to all....
barryc (Apr 11, 2007 9:12:49 PM)
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marciamellows (Apr 11, 2007 9:12:50 PM)
Well, I have to go. Hope everyone has a wonderful week. Talk to you all next week.
marciamellows (Apr 11, 2007 9:12:57 PM)
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phoenixw78 (Apr 11, 2007 9:13:05 PM)
they are starting a living with Chronic conditions group in Utah tomorrow is our first meeting
bette (Apr 11, 2007 9:13:17 PM)
It's time for me to leave also.
bette (Apr 11, 2007 9:13:29 PM)
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phoenixw78 (Apr 11, 2007 9:13:46 PM)
ok everybody I'm going to take off all of you be good and don't do anything I would do :p
PaRay (Apr 11, 2007 9:14:15 PM)
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phoenixw78 (Apr 11, 2007 9:18:50 PM)
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lost1112 (Apr 11, 2007 9:20:42 PM)
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mr.mellows (Apr 11, 2007 9:21:19 PM)
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