Myotonic Chat Group

Wes (Oct 28, 2009 7:44:47 PM)
(This user has entered Myotonic Chat Group)

Wes (Oct 28, 2009 7:44:58 PM)
Hi Ray

PaRay (Oct 28, 2009 7:44:58 PM)
Hey Wes

Wes (Oct 28, 2009 7:45:15 PM)
How are you Ray?

PaRay (Oct 28, 2009 7:45:18 PM)
How are you this week?

PaRay (Oct 28, 2009 7:45:26 PM)
I am fine.

Wes (Oct 28, 2009 7:45:43 PM)
I'm doing well. Messed up my knee yeasterday though.

PaRay (Oct 28, 2009 7:46:09 PM)
That is not good. How did you do that?

Wes (Oct 28, 2009 7:47:26 PM)
Well it happens a lot to me. I was laying in bed trying to read and i slid onto my side and my knee didn't go with me. I had to spend a couple of hours trying to get the kneecap on my right knee back into place.

PaRay (Oct 28, 2009 7:47:51 PM)
That must have hurt.

Wes (Oct 28, 2009 7:48:06 PM)
It doesn't hurt as much as it used too.

PaRay (Oct 28, 2009 7:48:34 PM)
Are you doing anything for it?

Wes (Oct 28, 2009 7:48:54 PM)
I walk with a cane when I can and I use a kneebrace when I can.

PaRay (Oct 28, 2009 7:49:23 PM)
Have you had problems before?

fluffy (Oct 28, 2009 7:49:27 PM)
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Wes (Oct 28, 2009 7:49:34 PM)
Hi fluffy.

PaRay (Oct 28, 2009 7:49:41 PM)
Hey Fluffy.

fluffy (Oct 28, 2009 7:49:54 PM)
hi you 2

Wes (Oct 28, 2009 7:50:02 PM)
I've had the problems become worse in the past year.

PaRay (Oct 28, 2009 7:50:57 PM)
Do you know what causes the problem?

PaRay (Oct 28, 2009 7:51:13 PM)
How are you doing Fluffy?

fluffy (Oct 28, 2009 7:51:26 PM)
how are you 2 doing tonight?

Wes (Oct 28, 2009 7:51:39 PM)
Well it's two things. First the MD and second loose connective tissue from my mom's side of the family.

PaRay (Oct 28, 2009 7:51:42 PM)
Doing fine here.

Wes (Oct 28, 2009 7:51:52 PM)
Fine...for now.

PaRay (Oct 28, 2009 7:52:03 PM)
Not good. Wes

fluffy (Oct 28, 2009 7:52:22 PM)
fine busy night last night and busy day in the rummage room we made 127.45

Wes (Oct 28, 2009 7:52:30 PM)
Well I also have essential tremors to look forward too as well.

Wes (Oct 28, 2009 7:52:43 PM)
Nice fluffy.

PaRay (Oct 28, 2009 7:52:59 PM)
Good for you Fluffy.

fluffy (Oct 28, 2009 7:53:33 PM)
the money we make supports the food pantry

Wes (Oct 28, 2009 7:53:57 PM)
Cool.

PaRay (Oct 28, 2009 7:54:02 PM)
The food pantry must be busy.

fluffy (Oct 28, 2009 7:54:56 PM)
we serve between 3500-4000 people throughout the year

PaRay (Oct 28, 2009 7:55:07 PM)
That is a lot.

Wes (Oct 28, 2009 7:56:45 PM)
Is that nuber higher thanlast year?

Wes (Oct 28, 2009 7:56:50 PM)
er Number

fluffy (Oct 28, 2009 7:57:10 PM)
I have no idea

Wes (Oct 28, 2009 7:57:59 PM)
Okay.

Wes (Oct 28, 2009 7:58:30 PM)
So is everyone excited about all hallows eve?

PaRay (Oct 28, 2009 7:59:06 PM)
Not much happening here. Get a half dozen or so.

Wes (Oct 28, 2009 7:59:34 PM)
We have a big neighborhood with lots of kids I expect about 20-45 kids.

bette (Oct 28, 2009 8:00:01 PM)
(This user has entered Myotonic Chat Group)

Wes (Oct 28, 2009 8:00:08 PM)
Hi Bette

fluffy (Oct 28, 2009 8:00:09 PM)
all l know is we are open 2 hours 2 days a week people my come once a month you receive bread vegetables fruit pasta peanut butter that is all I can think of

PaRay (Oct 28, 2009 8:00:19 PM)
Hey Betty or is this Mark?

fluffy (Oct 28, 2009 8:00:36 PM)
hi bette

fluffy (Oct 28, 2009 8:00:58 PM)
we have 60-80

bette (Oct 28, 2009 8:01:13 PM)
It's Bette

bette (Oct 28, 2009 8:01:21 PM)
Hi all.

Wes (Oct 28, 2009 8:01:23 PM)
Hoe are you this week Bette?

Wes (Oct 28, 2009 8:01:31 PM)
er how

bette (Oct 28, 2009 8:02:57 PM)
I'm doing fine Wes. We'll be in Phoenix around Dec 6th and leaving about a week later depending on

fluffy (Oct 28, 2009 8:03:55 PM)
going to watch a movie talk to you all later

fluffy (Oct 28, 2009 8:04:05 PM)
(This user has left DigiChat)

bette (Oct 28, 2009 8:04:10 PM)
where we are going to end up staying. If a hotel we will be leaving after about 4 days. If we get a time share we will be there all week. I'll let you know more when I do.

Wes (Oct 28, 2009 8:04:37 PM)
Hey Bette my mom says we can probably get together for lunch or dinner during the week if you're free.

bette (Oct 28, 2009 8:04:55 PM)
We'll make time.

Wes (Oct 28, 2009 8:05:13 PM)
She can't awit to see you.

Wes (Oct 28, 2009 8:05:23 PM)
er can't wait.

bette (Oct 28, 2009 8:05:26 PM)
I feel the same way.

bette (Oct 28, 2009 8:06:48 PM)
We went to a very unusual play last Sunday. Titled the Great North Hollywood Gay Wedding. It was interactive between the actors and audience and it was a riot.

Wes (Oct 28, 2009 8:06:59 PM)
Sound like fun.

Wes (Oct 28, 2009 8:07:27 PM)
I love interactive theater.

PaRay (Oct 28, 2009 8:07:40 PM)
Never heard of anything like that before.

bette (Oct 28, 2009 8:07:46 PM)
It's the first one we have been to.

Wes (Oct 28, 2009 8:08:07 PM)
Late night catachism is the same way (interactive)

Wes (Oct 28, 2009 8:08:43 PM)
I need to help set the table BRB

bette (Oct 28, 2009 8:08:53 PM)
My neighbor is the co-producer of the theatre group so we go to most of his plays just bo be supportive and we have never been disappointed.

bette (Oct 28, 2009 8:09:38 PM)
Now that Wes mentioned it, we did see Late night catachis but we just watched.

bette (Oct 28, 2009 8:09:55 PM)
Paray, have you heard anything about Rachel?

PaRay (Oct 28, 2009 8:10:21 PM)
Not really other than she is having some problems.

bette (Oct 28, 2009 8:10:42 PM)
We heard that last week.

PaRay (Oct 28, 2009 8:11:06 PM)
That is the last that I heard.

bette (Oct 28, 2009 8:11:25 PM)
Just wondering.

matt-p (Oct 28, 2009 8:11:35 PM)
(This user has entered Myotonic Chat Group)

Wes (Oct 28, 2009 8:11:40 PM)
HI Matt

PaRay (Oct 28, 2009 8:11:45 PM)
Hi Matt.

matt-p (Oct 28, 2009 8:11:45 PM)
hey

bette (Oct 28, 2009 8:11:51 PM)
Hi Matt, how are you doing?

matt-p (Oct 28, 2009 8:12:11 PM)
doing ok

Wes (Oct 28, 2009 8:12:49 PM)
Anyone have any plans for this weekend?

matt-p (Oct 28, 2009 8:12:51 PM)
anybody want tater soup

matt-p (Oct 28, 2009 8:13:07 PM)
staying dry and warm

PaRay (Oct 28, 2009 8:13:11 PM)
I'll take a bowl.

matt-p (Oct 28, 2009 8:13:21 PM)
come on over

matt-p (Oct 28, 2009 8:13:51 PM)
aide made tater soup mon or tue and we been eating on it sence

PaRay (Oct 28, 2009 8:14:08 PM)
Does it have cabbage in it?

matt-p (Oct 28, 2009 8:14:13 PM)
i am tater soup sick

matt-p (Oct 28, 2009 8:14:19 PM)
nnnnnnnnnnnnooooooooooooooooooooooooooo

matt-p (Oct 28, 2009 8:14:36 PM)
cant have cabbage

Wes (Oct 28, 2009 8:15:24 PM)
How about leeks. Does it have Leeks?

matt-p (Oct 28, 2009 8:15:24 PM)
it has onions and sausage in it]

matt-p (Oct 28, 2009 8:15:34 PM)
nope

PaRay (Oct 28, 2009 8:15:40 PM)
Close enough.

matt-p (Oct 28, 2009 8:15:57 PM)
just taters onions and sausage

Wes (Oct 28, 2009 8:16:01 PM)
I like my grandmams Potato leek soup. It's the old country recipe.

paper (Oct 28, 2009 8:16:15 PM)
(This user has entered Myotonic Chat Group)

matt-p (Oct 28, 2009 8:16:16 PM)
neat

Wes (Oct 28, 2009 8:16:19 PM)
Hi Paper

matt-p (Oct 28, 2009 8:16:25 PM)
hey paper

paper (Oct 28, 2009 8:16:26 PM)
hi guys

matt-p (Oct 28, 2009 8:16:55 PM)
my yahoo is on the blink paper

matt-p (Oct 28, 2009 8:17:15 PM)
cant get signed in for nothing

paper (Oct 28, 2009 8:17:29 PM)
just like mine was doing

Wes (Oct 28, 2009 8:17:30 PM)
I hate it when that happens

bette (Oct 28, 2009 8:17:32 PM)
Our weekend will be full Wes. Saturday morning is Temple which should be fun this week. It will be a service with lost of singing and noise making as opposed to the traditional quieter one. Sunday is Mitzvah Day when we do "charitable things" I'll probably help make peanut butter & jelly sandwhich while Mark will help sort clothing and toiletries.

Wes (Oct 28, 2009 8:17:54 PM)
That's great Bette.

bette (Oct 28, 2009 8:18:32 PM)
Hi Paper

paper (Oct 28, 2009 8:19:11 PM)
hi

bette (Oct 28, 2009 8:19:38 PM)
Sorry about my spelling. I get worse as I grow older.

matt-p (Oct 28, 2009 8:19:41 PM)
paper how is everybody

matt-p (Oct 28, 2009 8:19:55 PM)
its ok bette

paper (Oct 28, 2009 8:20:14 PM)
we are all ok

matt-p (Oct 28, 2009 8:20:30 PM)
mine stinks to when i get to shakein a bunch

matt-p (Oct 28, 2009 8:20:40 PM)
good

paper (Oct 28, 2009 8:21:02 PM)
it isnt my spelling that is a problem it is my typing lol

Wes (Oct 28, 2009 8:21:08 PM)
lol

Wes (Oct 28, 2009 8:21:25 PM)
It's the same with me paper

bette (Oct 28, 2009 8:21:33 PM)
That too Paper

matt-p (Oct 28, 2009 8:21:34 PM)
i shake all the time but i get worse at other times

paper (Oct 28, 2009 8:21:41 PM)
my hands have minds of their own

Wes (Oct 28, 2009 8:22:04 PM)
Mine have a mind of there own too. They diecide when they don't work.

bette (Oct 28, 2009 8:22:11 PM)
I call that my Marsian alphabet

Wes (Oct 28, 2009 8:22:37 PM)
BRB

paper (Oct 28, 2009 8:23:19 PM)
mine have spasms and whenthey do they sometimes i dont feal it happening and they type what ever and i hit send before i know it

paper (Oct 28, 2009 8:23:30 PM)
lol bette

bette (Oct 28, 2009 8:23:34 PM)
Wes, I'm not sure I have your phone number. I'll ned it in AZ

matt-p (Oct 28, 2009 8:24:50 PM)
dang my neck hurts

paper (Oct 28, 2009 8:25:30 PM)
aw poor mat

matt-p (Oct 28, 2009 8:26:18 PM)
got a kink in it i think

paper (Oct 28, 2009 8:26:44 PM)
probably

Wes (Oct 28, 2009 8:26:51 PM)
I get those all the time. I find that the best way to deal is to lean your head back.

matt-p (Oct 28, 2009 8:27:23 PM)
i am leaned back tilted back all that good stuff

matt-p (Oct 28, 2009 8:27:40 PM)
ask paper shes seen my chair

Wes (Oct 28, 2009 8:27:56 PM)
KK

matt-p (Oct 28, 2009 8:28:00 PM)
my chair is a real caddy

paper (Oct 28, 2009 8:28:07 PM)
yep but are you in your w/c or lazyboy

bette (Oct 28, 2009 8:28:24 PM)
got it Wes, thanks.

Wes (Oct 28, 2009 8:28:29 PM)
NP

matt-p (Oct 28, 2009 8:28:52 PM)
w/c right now

paper (Oct 28, 2009 8:29:00 PM)
cool

bette (Oct 28, 2009 8:29:00 PM)
What's KK?

matt-p (Oct 28, 2009 8:29:09 PM)
for about an hour longer

Wes (Oct 28, 2009 8:29:09 PM)
It means okay

bette (Oct 28, 2009 8:29:41 PM)
KK

momma (Oct 28, 2009 8:29:48 PM)
(This user has entered Myotonic Chat Group)

Wes (Oct 28, 2009 8:29:56 PM)
Hi Momma

paper (Oct 28, 2009 8:29:57 PM)
hi momma

bette (Oct 28, 2009 8:30:02 PM)
Hi Momma, how are you doing?

matt-p (Oct 28, 2009 8:30:03 PM)
hey momma

momma (Oct 28, 2009 8:30:03 PM)
hello

momma (Oct 28, 2009 8:30:16 PM)
how is everyone?

matt-p (Oct 28, 2009 8:30:16 PM)
how are you

momma (Oct 28, 2009 8:30:24 PM)
doing ok here

Wes (Oct 28, 2009 8:30:27 PM)
I doing well.

paper (Oct 28, 2009 8:30:32 PM)
ok

bette (Oct 28, 2009 8:30:36 PM)
I'm doing ok

momma (Oct 28, 2009 8:30:43 PM)
sounds good

matt-p (Oct 28, 2009 8:30:49 PM)
good

matt-p (Oct 28, 2009 8:30:59 PM)
did K get his chair

bette (Oct 28, 2009 8:31:03 PM)
What have you been up to?

momma (Oct 28, 2009 8:31:05 PM)
nope

bette (Oct 28, 2009 8:31:42 PM)
Is k your husband or your son and what kind of MD does he have?

momma (Oct 28, 2009 8:31:52 PM)
mabey getting a new shower and also help with lift but the thing he really needs thier dragging thier feet

momma (Oct 28, 2009 8:32:11 PM)
my son is 23 he has duchenne

bette (Oct 28, 2009 8:32:21 PM)
Oh, I'm so sorry

bette (Oct 28, 2009 8:32:51 PM)
Matt and Paper are you also involved in DM?

paper (Oct 28, 2009 8:33:20 PM)
i go to them all lol

momma (Oct 28, 2009 8:33:21 PM)
i hope you all odnt mind me jumping in this chat im cohost for dmd chat but no one was thier

momma (Oct 28, 2009 8:33:33 PM)
i was bored

bette (Oct 28, 2009 8:33:42 PM)
You're more than welcome anytime.

matt-p (Oct 28, 2009 8:33:46 PM)
its ok momma

momma (Oct 28, 2009 8:33:46 PM)
ty

Wes (Oct 28, 2009 8:33:48 PM)
Welcome

momma (Oct 28, 2009 8:33:54 PM)
ty wes

paper (Oct 28, 2009 8:33:59 PM)
we are all jerrys kids lol

bette (Oct 28, 2009 8:34:11 PM)
So true.

matt-p (Oct 28, 2009 8:34:24 PM)
they let this old sci parkinsons guy in

momma (Oct 28, 2009 8:34:40 PM)
so what can anyone tell me about myotonic

bette (Oct 28, 2009 8:34:42 PM)
We got a letter from Alice saying we grossed about 63,000 at our fund-raiser

Wes (Oct 28, 2009 8:34:52 PM)
Well dinner will be ready soon so LAter all.

paper (Oct 28, 2009 8:34:53 PM)
cool

matt-p (Oct 28, 2009 8:34:53 PM)
wow

Wes (Oct 28, 2009 8:35:01 PM)
(This user has left DigiChat)

matt-p (Oct 28, 2009 8:35:04 PM)
nite wes

Sunney (Oct 28, 2009 8:35:20 PM)
(This user has entered Myotonic Chat Group)

Sunney (Oct 28, 2009 8:35:24 PM)
(This user has moved to Parents of Young Adults with DMD)

momma (Oct 28, 2009 8:35:48 PM)
bye ill check back later

momma (Oct 28, 2009 8:35:57 PM)
(This user has moved to Parents of Young Adults with DMD)

paper (Oct 28, 2009 8:35:57 PM)
by momma

matt-p (Oct 28, 2009 8:38:20 PM)
(This user has moved to Parents of Young Adults with DMD)

bette (Oct 28, 2009 8:40:01 PM)
Paper, I know you have been on before but I have forgotten your background. Can you remind me.

paper (Oct 28, 2009 8:40:31 PM)
sure i am 35 with central core md and my kids both have it snd so does my dad

bette (Oct 28, 2009 8:41:02 PM)
Thanks. I don't know anything about central core. How does it manisfest?

paper (Oct 28, 2009 8:41:31 PM)
at birth mostly but mine i dint find out tillthis year for sure

paper (Oct 28, 2009 8:41:47 PM)
it is pain and dislocations of joints

paper (Oct 28, 2009 8:42:07 PM)
and other md related stuff can go wrong

bette (Oct 28, 2009 8:42:14 PM)
Thanks for the education.

paper (Oct 28, 2009 8:42:24 PM)
weakness and stuff

bette (Oct 28, 2009 8:43:03 PM)
Can you still walk and function on your own?

paper (Oct 28, 2009 8:43:12 PM)
thats ok i should go to the mda site and copy and paste it lol it would save you all from my worrid typing

paper (Oct 28, 2009 8:43:20 PM)
ya mostly for now

bette (Oct 28, 2009 8:43:32 PM)
That's good

paper (Oct 28, 2009 8:44:02 PM)
i was born with double dislocated hip and that is the main marker for babies

bette (Oct 28, 2009 8:44:25 PM)
Sounds really painful.

paper (Oct 28, 2009 8:44:29 PM)
just bk in the 0s they were to stupid to put it all together

PaRay (Oct 28, 2009 8:44:48 PM)
(This user has left DigiChat)

paper (Oct 28, 2009 8:45:06 PM)
my kids and me can dislocate joints allmost on comand lol

bette (Oct 28, 2009 8:45:40 PM)
I think this is a first. I don't remember Payray ever logging off before the end of the chat.

bette (Oct 28, 2009 8:45:53 PM)
You guys must be great at parties.

paper (Oct 28, 2009 8:45:56 PM)
maybe he got booted

paper (Oct 28, 2009 8:46:00 PM)
ya lol

paper (Oct 28, 2009 8:46:04 PM)
j/k

bette (Oct 28, 2009 8:46:44 PM)
jk-just kidding?

paper (Oct 28, 2009 8:46:59 PM)
i went to the ear nose and throat dr and he is convinced i have week swolling muscles

paper (Oct 28, 2009 8:47:01 PM)
ya

paper (Oct 28, 2009 8:47:21 PM)
he called it dysphagia

bette (Oct 28, 2009 8:47:27 PM)
I wouldn't doubt it. It is a big problem with Myotonic.

bette (Oct 28, 2009 8:47:48 PM)
Did he have any suggestions for you?

paper (Oct 28, 2009 8:48:20 PM)
no not yet he want to do a 3 phase swollow study to see how bad it really is first

paper (Oct 28, 2009 8:49:32 PM)
but i have been getting choked a lot on just plain liquids

paper (Oct 28, 2009 8:50:48 PM)
brb

bette (Oct 28, 2009 8:52:15 PM)
I had a swollow study done a few years ago but I don't know if it was a 3 stage. I was in the hospital anyhow so the Dr decided that was a good time to try. They put be on pulverized food and I hated it. I told them I would rather chock once in a while. Now I have more trouble and I don't eat things that I find hard. The therapist suggests that we try to swollow with our head down or to one side or the other. It's counter intuitive but it seems to work. I have to go get ready for a class. Hope the info works. See you next week.

bette (Oct 28, 2009 8:52:22 PM)
(This user has left DigiChat)

paper (Oct 28, 2009 8:53:11 PM)
(This user has moved to Parents of Young Adults with DMD)

iris1 (Oct 28, 2009 8:54:42 PM)
(This user has entered Myotonic Chat Group)

iris1 (Oct 28, 2009 8:55:40 PM)
I am very late tonight. What have we been taking about this evening?

iris1 (Oct 28, 2009 8:56:17 PM)
That was suppose to be talking about this evening?

iris1 (Oct 28, 2009 8:57:44 PM)
(This user has left DigiChat)