Myotonic Chat Group
vdoman (Dec 26, 2007 8:46:25 PM)
PaRay (Dec 26, 2007 8:46:40 PM)
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PaRay (Dec 26, 2007 8:47:09 PM)
Hey VDO, How are things in Fresno?
vdoman (Dec 26, 2007 8:47:38 PM)
Hi Ray how are you and Ann and how was Santa's Day
vdoman (Dec 26, 2007 8:47:59 PM)
Fresno is Cooooooooold!
PaRay (Dec 26, 2007 8:48:12 PM)
We are fine and had a good day.
PaRay (Dec 26, 2007 8:48:25 PM)
How cool is cool????
marciamellows (Dec 26, 2007 8:48:31 PM)
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PaRay (Dec 26, 2007 8:48:43 PM)
Hey MM,
vdoman (Dec 26, 2007 8:48:46 PM)
It is high 50's daytime
vdoman (Dec 26, 2007 8:49:05 PM)
Hi MM
marciamellows (Dec 26, 2007 8:49:11 PM)
I just got home from Las Vegas about 2 hours ago.
PaRay (Dec 26, 2007 8:49:17 PM)
You are right. That is cool.
PaRay (Dec 26, 2007 8:49:27 PM)
Make any money?
marciamellows (Dec 26, 2007 8:49:29 PM)
Did not hit any Royal Flushes, but I hit 4 aces for $500.
vdoman (Dec 26, 2007 8:49:39 PM)
How was Ka-chink Lost wages
bette (Dec 26, 2007 8:49:41 PM)
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PaRay (Dec 26, 2007 8:49:57 PM)
Hi Bette,
vdoman (Dec 26, 2007 8:50:05 PM)
Hi Bette
bette (Dec 26, 2007 8:50:05 PM)
Hi Marcia and Paray
bette (Dec 26, 2007 8:50:15 PM)
and vdo.
PaRay (Dec 26, 2007 8:51:20 PM)
Bette..how are you doing this week?
vdoman (Dec 26, 2007 8:51:33 PM)
How is the weather down there. We are coming down Sat and staying until Tues going to Disneyland for Kevs Birthday
bette (Dec 26, 2007 8:52:15 PM)
I'm doing O.K., my mouse is having a probllem. vdo, weather is cold and windy now, they say it might rain on Friday but week-end should be great.
marciamellows (Dec 26, 2007 8:52:47 PM)
Bette, I was just telling them before you got on that I just got home from Las Vegas about 2 hours ago. 2 of my daughters came with us. This was the high point of their trip: I was sitting in the back of the van. We were just about to arrive at the hotel so I undid my seat belt and reached down to get my brush out of my purse. My daugher Robin was driving. As I bent down she applied the brakes (not intentionally) and I was air born. I landed almost in the front seat. My daughers laughed so hard that they could hardly catch their breaths. Rotten kids!
PaRay (Dec 26, 2007 8:52:49 PM)
Give your mouse a little cheeze.
vdoman (Dec 26, 2007 8:52:59 PM)
That is great hoping for warmer weather on Sunday-Tuesday
bette (Dec 26, 2007 8:53:42 PM)
Marcia, are you O.K.
marciamellows (Dec 26, 2007 8:54:04 PM)
I was fine.
marciamellows (Dec 26, 2007 8:54:35 PM)
Vdo, what are you goint to do down here besides Disneyland? Is Susan coming with you?
vdoman (Dec 26, 2007 8:54:51 PM)
MM tell Robin that if she likes living in your house she better not laugh at you
lost1112 (Dec 26, 2007 8:55:01 PM)
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marciamellows (Dec 26, 2007 8:55:03 PM)
You got that right vdo.
marciamellows (Dec 26, 2007 8:55:25 PM)
Oh my God!!! Lost, where have you been?
bette (Dec 26, 2007 8:55:32 PM)
Hi lost, glad you found us again. What's been going on with you.
lost1112 (Dec 26, 2007 8:55:42 PM)
been losylol
vdoman (Dec 26, 2007 8:55:49 PM)
Just Disneyland and yes Susan coming with Kev myself and Kevins friend Luciano
marciamellows (Dec 26, 2007 8:55:49 PM)
It has been so long that you have to refresh my memory about yourself lost.
lost1112 (Dec 26, 2007 8:55:53 PM)
opps lost
lost1112 (Dec 26, 2007 8:56:22 PM)
confirmed for type 2 MMD
vdoman (Dec 26, 2007 8:56:36 PM)
Lost got Lost
marciamellows (Dec 26, 2007 8:56:59 PM)
comfirmed how? DNA? Please refresh my memory about youself. Where you live, married, children, symptoms, etc. etc. etc.
lost1112 (Dec 26, 2007 8:57:08 PM)
how is everyone tonight
Robyn-G (Dec 26, 2007 8:57:12 PM)
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marciamellows (Dec 26, 2007 8:57:32 PM)
Hi robyn. How was your Christmas. Congradulations again on Joe getting disability.
PaRay (Dec 26, 2007 8:57:34 PM)
Hey Robyn
vdoman (Dec 26, 2007 8:57:44 PM)
Hi Robyn How is Joe and the kids doing and you of course
lost1112 (Dec 26, 2007 8:58:35 PM)
ok live in KY now confirmed with blood test about two years ago been married for 4 years and 2 little girls
Robyn-G (Dec 26, 2007 8:59:00 PM)
Hey everyone!
marciamellows (Dec 26, 2007 8:59:00 PM)
How old are your girls and do they have MMD?
lost1112 (Dec 26, 2007 8:59:03 PM)
hey i remember robyn
Robyn-G (Dec 26, 2007 8:59:06 PM)
Christmas was great.
Robyn-G (Dec 26, 2007 8:59:13 PM)
I remember you too, Lost!
lost1112 (Dec 26, 2007 8:59:40 PM)
6 and 4 no signs of it in either of them thank God
vdoman (Dec 26, 2007 8:59:51 PM)
Lost if you have MMD 2 it is not Hereditary
marciamellows (Dec 26, 2007 8:59:57 PM)
lost, do you still work?
Robyn-G (Dec 26, 2007 9:00:02 PM)
We just found out that Jessica is now approved for disability.
marciamellows (Dec 26, 2007 9:00:18 PM)
vdo, I did not know that about MMD 2.
bette (Dec 26, 2007 9:00:18 PM)
All right Robyn!
lost1112 (Dec 26, 2007 9:00:20 PM)
no been on disability for just over a year
lost1112 (Dec 26, 2007 9:00:43 PM)
thanks VDO
vdoman (Dec 26, 2007 9:00:51 PM)
Go Robyn
marciamellows (Dec 26, 2007 9:00:58 PM)
Boy Robyn, what a Christmas you are having! I still get confused. Is Jessica your younger or older daughter
Robyn-G (Dec 26, 2007 9:01:47 PM)
VDO - I've never read that MMD 2 is not hereditary?
Robyn-G (Dec 26, 2007 9:02:07 PM)
Yes, Marcia we are blessed. Jessica is the youngest, 12
lost1112 (Dec 26, 2007 9:02:07 PM)
if it is not hereditary then why do I have it and others in my family as well
Robyn-G (Dec 26, 2007 9:02:24 PM)
Janelle is likely going to be approved too. We have a mental evaluation coming up this week.
Robyn-G (Dec 26, 2007 9:02:59 PM)
Corey - or anyone else - do you know if there is something where I can get paid as caregiver for the girls, ie. I don't work fulltime because they need me?
vdoman (Dec 26, 2007 9:03:00 PM)
Not necessarily Hereditary it can be passed on. No such thing as Congenital MMD2
lost1112 (Dec 26, 2007 9:03:17 PM)
just wondering it was one of the questions they asked before testing me
lost1112 (Dec 26, 2007 9:03:41 PM)
yea that is true ok thanks for clearing that up
vdoman (Dec 26, 2007 9:03:55 PM)
Talk to In-home supportive services through your Medicaid
Robyn-G (Dec 26, 2007 9:04:01 PM)
what do you mean, not necessarily hereditary?
Robyn-G (Dec 26, 2007 9:04:09 PM)
ok, thanks Corey
Robyn-G (Dec 26, 2007 9:04:24 PM)
we are entering a new phase of MMD
Robyn-G (Dec 26, 2007 9:04:40 PM)
Joe just got a prescription from his neuro. for a motorized scooter
marciamellows (Dec 26, 2007 9:04:44 PM)
I just spoke to Alice, the Guru. She said that you are right vdo that there is not Congenital MMD2, but that it is still hereditary.
Robyn-G (Dec 26, 2007 9:04:56 PM)
now that he is on medicaid we can get it paid for
vdoman (Dec 26, 2007 9:04:59 PM)
There is a chance in can be passed on but more unlikely
lost1112 (Dec 26, 2007 9:05:00 PM)
what do you mean new phase
Robyn-G (Dec 26, 2007 9:05:39 PM)
now we have to look at how we are going to transport it. the one we looked at comes apart pretty easy, but i still think that it would be hard to do and undo if needed several times a day. we are looking at doing some kind of pully lift
vdoman (Dec 26, 2007 9:07:02 PM)
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marciamellows (Dec 26, 2007 9:07:08 PM)
Robyn, I called the Guru (Alice) again and she said that getting paid as caregiver runs different in different states and that you should either email her or call her and she will give you some numbers to call.
shelly (Dec 26, 2007 9:08:10 PM)
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vdoman (Dec 26, 2007 9:08:21 PM)
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shelly (Dec 26, 2007 9:08:24 PM)
hi Everyone!
lost1112 (Dec 26, 2007 9:08:32 PM)
can anyone tell me if stages are a part of this or not it seems that at times i seem to be the same no changes then suddenly i go down hill quickly not to bad right now but far worse than say 6 months ago
bette (Dec 26, 2007 9:08:57 PM)
Robyn, don't forget to check the child=care portion of your Federal Incoem tax. They do have a credit if you have to pay someone else
shelly (Dec 26, 2007 9:09:07 PM)
I got cataracts and thought everything had stopped- 3 years later AFOs
marciamellows (Dec 26, 2007 9:09:10 PM)
robyn, corey used a lift for suzy's scooter. I had one and had a lot of difficulty with it and finally ended up buying a van conversion, but it was very expensive. Jeff's brother helped us pay for it.
snaped (Dec 26, 2007 9:09:15 PM)
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shelly (Dec 26, 2007 9:09:40 PM)
lost- it is different in progression for everyone
Robyn-G (Dec 26, 2007 9:09:50 PM)
THanks Marcia, I'll email Alice
Robyn-G (Dec 26, 2007 9:10:01 PM)
Yes, Lost progression can go like that, at least in type 1.
marciamellows (Dec 26, 2007 9:10:06 PM)
lost, Jeff reaches a plateau and then does not seem to change because he is changing, but the change is gradual and he really does not feel the change until he reaches the next plateau.
Robyn-G (Dec 26, 2007 9:10:15 PM)
Joe seemed kind of stable for a while and then all of a sudden we saw a big progression
vdoman (Dec 26, 2007 9:10:26 PM)
Robyn go to www.discountramps.com I got a manual lift for my vehicle for $700
Robyn-G (Dec 26, 2007 9:10:31 PM)
good description marcia
Robyn-G (Dec 26, 2007 9:10:36 PM)
thanks vdo
lost1112 (Dec 26, 2007 9:10:54 PM)
ok thanks all
barryc (Dec 26, 2007 9:11:10 PM)
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snaped (Dec 26, 2007 9:11:15 PM)
Robyn-Fluffy told me about Joe...Congrats!
vdoman (Dec 26, 2007 9:11:18 PM)
Hi BC
shelly (Dec 26, 2007 9:11:23 PM)
My doc told me I'd be ok for a long time- I though he mant like 20 years- I started having problems and when I saw him, I asked, "didn't you say I'd be ok for many years?" he said, "you have.
barryc (Dec 26, 2007 9:11:31 PM)
Getting on the chat tonight was SO SLOW
shelly (Dec 26, 2007 9:11:39 PM)
meaning that I'm not now
shelly (Dec 26, 2007 9:11:45 PM)
who knows
vdoman (Dec 26, 2007 9:12:12 PM)
Must be the user BC
shelly (Dec 26, 2007 9:12:17 PM)
Barry- My uncle got the book- I'll give you his # after the chat.
marciamellows (Dec 26, 2007 9:12:20 PM)
shelly, sometimes the change is so gradual that you do not feel it but it is happening continuously.
barryc (Dec 26, 2007 9:12:29 PM)
ha! must be CA guys know Java best.
Robyn-G (Dec 26, 2007 9:12:35 PM)
Bette - I'd rather be the care provider for the girls, than to hire someone else
barryc (Dec 26, 2007 9:12:43 PM)
thanx shelly!
marciamellows (Dec 26, 2007 9:12:51 PM)
Hi bc. How are Julie and Terry?
bette (Dec 26, 2007 9:12:54 PM)
Shelly, you are still O.K., your body is just deteriorating>
lost1112 (Dec 26, 2007 9:13:00 PM)
i know it is very differant for everyone and even though it has gotten much worse i still feel i am one of the lucky ones
barryc (Dec 26, 2007 9:13:08 PM)
we have been getting book orders, especially this time of the year from Barnes and Noble.
Robyn-G (Dec 26, 2007 9:13:17 PM)
THanks, Snaped! Jessica is approved too.
shelly (Dec 26, 2007 9:13:17 PM)
I feel lucky too
marciamellows (Dec 26, 2007 9:13:20 PM)
bc, We just got back from Las Vegas about 2 hours ago.
shelly (Dec 26, 2007 9:13:31 PM)
did you win anything mm?
marciamellows (Dec 26, 2007 9:14:02 PM)
I play the video poker machines. No Royal Flushes, but 4 aces for $500.
lost1112 (Dec 26, 2007 9:14:07 PM)
she always win something
vdoman (Dec 26, 2007 9:14:08 PM)
MM are they ready to tear down the Sahara yet
marciamellows (Dec 26, 2007 9:14:26 PM)
We keep expecting them to tear it down, but it is still standing.
shelly (Dec 26, 2007 9:14:27 PM)
bette- I don't feel that my body is deteriorating at all- still strong
barryc (Dec 26, 2007 9:14:28 PM)
Terry has made lots of friends of late... I have to work myself into his social calendar. Julie is holding her own... but I see weakness more and more. Julie has an appointment with a world class doc, balance specialist, in early March.
shelly (Dec 26, 2007 9:15:08 PM)
but I know this is progressive, but I'm going to fight this MMD crap
marciamellows (Dec 26, 2007 9:15:21 PM)
Where is Terry making all of his new friends?
lost1112 (Dec 26, 2007 9:15:27 PM)
you said it all there shelly
barryc (Dec 26, 2007 9:15:38 PM)
we need an MMD un-party... we can poke fun at MMD.
marciamellows (Dec 26, 2007 9:15:54 PM)
Barry, I was so amazed when you emailed me about a balance specialist. I think that there is a specialist for everything.
shelly (Dec 26, 2007 9:15:55 PM)
bette- my hands are a little weak, I wear Afo's but other than that- heart is good- bp good-need to lose some weight
bette (Dec 26, 2007 9:16:14 PM)
I didn't know there was such a thing as a Balance Specialist
barryc (Dec 26, 2007 9:16:21 PM)
terry has a friend who knew some friends, who knew more friends. Of late, he is cicrulating with the girls... I wonder why.
lost1112 (Dec 26, 2007 9:16:29 PM)
me either
shelly (Dec 26, 2007 9:16:41 PM)
I need a balance specialist. I've been having sporadic vertigo and it's annoying
bette (Dec 26, 2007 9:16:47 PM)
Shelly you sound great to me.
vdoman (Dec 26, 2007 9:17:00 PM)
I got my set of hearing aids today, boy I can hear things I never heard before. It is amazing
shelly (Dec 26, 2007 9:17:01 PM)
there is one neuro in town who specializes in balance- not my MMD doc
shelly (Dec 26, 2007 9:17:16 PM)
bette- how so?
bette (Dec 26, 2007 9:17:33 PM)
Just your attitude Shelly.
barryc (Dec 26, 2007 9:17:34 PM)
the balance specialist is a neurologist... helps people having trouble with their balance... our doc phoned him and asked if he has has any success with MMD dudes... he asked Julie to come in...
shelly (Dec 26, 2007 9:17:52 PM)
vd- that's how I felt after I got my right catarct removed as far as sight is concerned
snaped (Dec 26, 2007 9:17:54 PM)
Barry-Fluffy says to have your UN party in Vegas and she's in!
shelly (Dec 26, 2007 9:18:14 PM)
thx bette-much more fun being positive
marciamellows (Dec 26, 2007 9:18:36 PM)
vdo, have you worn hearing aids in the past? I wish that they could help my mother (she is almost 90). The other day I could not open her door with my key because she had the chain on so I called her on the phone and told her that I was at her door. She kept saying "what store"?
bette (Dec 26, 2007 9:18:40 PM)
We're willing to go to Vegas and you know Marcia will be there.
shelly (Dec 26, 2007 9:18:44 PM)
OK- I have a question for the ladies and caregivers of ladies- who has frontal thinning hair
iris1 (Dec 26, 2007 9:18:44 PM)
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barryc (Dec 26, 2007 9:18:47 PM)
tell FLUFFY that Vegas is on her "want to go" list... been there a couple of times... me, I get bored just playing cards, money or not.
vdoman (Dec 26, 2007 9:18:53 PM)
Snap where is fluffy tonite
marciamellows (Dec 26, 2007 9:19:22 PM)
snaped, I'm in for an un party in Vegas also! Actually, I am in for anything in Vegas.
snaped (Dec 26, 2007 9:19:32 PM)
sitting behind me.....im translating
barryc (Dec 26, 2007 9:19:35 PM)
corey, you dog... hearing aids... now you can find out all the things people have been saying about you that you did not hear.
vdoman (Dec 26, 2007 9:19:46 PM)
First time I ever wore Hearing aids
shelly (Dec 26, 2007 9:19:47 PM)
lol
iris1 (Dec 26, 2007 9:19:55 PM)
PaRay thanks for the information you sent me in the mail,
shelly (Dec 26, 2007 9:20:02 PM)
is deafness a symptom of MMD?
barryc (Dec 26, 2007 9:20:17 PM)
juie is getting a hearing test next week... hearing loss is also a MMD symtom,,,,,, and the beat goes on.
PaRay (Dec 26, 2007 9:20:32 PM)
Iris..could be of some help.
vdoman (Dec 26, 2007 9:20:39 PM)
BC you cannot whisper behind my back anymore
marciamellows (Dec 26, 2007 9:20:40 PM)
shelly, vdo does not have MMD. He is a caregiver.
bette (Dec 26, 2007 9:20:42 PM)
Marcia, why can't hearing aids help your Mom
shelly (Dec 26, 2007 9:20:43 PM)
wtf- sorry about the language but can we get any more symptoms
barryc (Dec 26, 2007 9:20:45 PM)
corey, what kind of hearing aid did you get?
lost1112 (Dec 26, 2007 9:20:49 PM)
like we did not have enough symptoms lol
shelly (Dec 26, 2007 9:21:23 PM)
my husband has supersonic hearing
shelly (Dec 26, 2007 9:21:39 PM)
It's like I have to read lips to hear what he hears
barryc (Dec 26, 2007 9:21:39 PM)
shelly, the list of symptoms is one list I want to throw in the ocean....
vdoman (Dec 26, 2007 9:21:39 PM)
$4400 worth of a digital in the ear for both
shelly (Dec 26, 2007 9:21:56 PM)
me too
vdoman (Dec 26, 2007 9:22:00 PM)
Made by Beltone
barryc (Dec 26, 2007 9:22:03 PM)
digital... I knew it... such a techie.
marciamellows (Dec 26, 2007 9:22:10 PM)
bette, I think that my Mom's hearing loss is just too progressed from advanced age. She has trouble getting them in also.
lost1112 (Dec 26, 2007 9:22:13 PM)
ill help barry
shelly (Dec 26, 2007 9:22:16 PM)
However- COUNT YOUR BLESSINGS
barryc (Dec 26, 2007 9:22:47 PM)
julie is going to her doc for hearing test... he has no ax to grind in recommending hearing aids... but I do think Julie needs it.
shelly (Dec 26, 2007 9:22:54 PM)
need answers about the hair
marciamellows (Dec 26, 2007 9:23:12 PM)
vdo, I think that it is wonderful that you got the hearing aids and it is about time, but what made you do it after so many years?>
barryc (Dec 26, 2007 9:23:28 PM)
if it does fit, you have to acquiit... (just thought I would throw that in)... I am in a funky mood tonight.
bette (Dec 26, 2007 9:23:34 PM)
Shelly, I do not have that problem but some people in our group have it.
PaRay (Dec 26, 2007 9:23:36 PM)
Shelly..Ann has some frontal balding.
shelly (Dec 26, 2007 9:24:01 PM)
I can not stand Johnny Cochran (even though he's dead)
marciamellows (Dec 26, 2007 9:24:20 PM)
shelly, what is your question about the hair. You just said that you have a question, but you did not say what the question was.
lost1112 (Dec 26, 2007 9:24:29 PM)
Shelly i cant tell you because i am not female but my mther and grandmother both had frontal hair loss and my sister as well
barryc (Dec 26, 2007 9:24:38 PM)
shelly, my daugher (who does not have MMD) had some frontal balding... had hair transplants, followed by a laser treatment she does herself... all her hair has been restored.
shelly (Dec 26, 2007 9:24:42 PM)
When I have m yhair highlightened, it hides it, but as it grows out, I really notice how this it's getting
vdoman (Dec 26, 2007 9:24:45 PM)
I needed it for a long time I have a 20% loss in one ear and 30% loss in the other ear plus my mom is helping me pay for them
shelly (Dec 26, 2007 9:25:37 PM)
I will do the same Barry if it gets worse- I can usually style it ti hide it, but I love my hair
marciamellows (Dec 26, 2007 9:26:10 PM)
shelly, I think that frontal balding is very comming in MMD in both men and women.
marciamellows (Dec 26, 2007 9:26:21 PM)
That is common
barryc (Dec 26, 2007 9:26:23 PM)
shelly... my daughter did a lot of research in choosing a treatment and her doc... if you want her email, just let me know....
shelly (Dec 26, 2007 9:26:33 PM)
I heard and read just thinning in women
shelly (Dec 26, 2007 9:26:56 PM)
my bro is almost bald so he shaved his head- I'm never going to do that
shelly (Dec 26, 2007 9:27:09 PM)
thx Barry
shelly (Dec 26, 2007 9:27:20 PM)
I think I just need it highlighted
vdoman (Dec 26, 2007 9:27:24 PM)
Bald is In look at Howie Mandel
marciamellows (Dec 26, 2007 9:27:25 PM)
I think that your bro can probably get away with shaving his head. You, being a woman, would probably look odd.
bette (Dec 26, 2007 9:28:00 PM)
You never know Marcia, it might start a trend.
suziern (Dec 26, 2007 9:28:14 PM)
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suziern (Dec 26, 2007 9:28:23 PM)
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vdoman (Dec 26, 2007 9:28:30 PM)
Hi Suzette
marciamellows (Dec 26, 2007 9:28:32 PM)
That was quick
lost1112 (Dec 26, 2007 9:28:46 PM)
hey look at it this way God only created so many perfect heads the rest he put hair on
barryc (Dec 26, 2007 9:29:12 PM)
I tried to get hair transplants... but I was not a candidate. Julie's hair went thn after successfully battling ovarian cancer with chemo and more chemo (yuck)....we both tried hair pieces... and think we both looked good.... but they were too warm to wear here in FL....
shelly (Dec 26, 2007 9:29:28 PM)
mm- I would never shave my head- my hair is nice, but I'm very concerned about my thinning
suziern (Dec 26, 2007 9:29:48 PM)
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shelly (Dec 26, 2007 9:29:59 PM)
you can see where the thinning ends and the thicker hair begins
vdoman (Dec 26, 2007 9:30:01 PM)
Wb Suzette
suziern (Dec 26, 2007 9:30:10 PM)
Hey, hi everybody
barryc (Dec 26, 2007 9:30:14 PM)
shelly,,,, our daughter also puts some kind of dust (a natural protein) in her hair...helps thicken it.
bette (Dec 26, 2007 9:30:19 PM)
Hi Suzette, We have missed you. How are things in Indy?
shelly (Dec 26, 2007 9:30:20 PM)
my sis- who models- has MMD is freaked out because I told her about this
vdoman (Dec 26, 2007 9:30:31 PM)
Bc cannot picture you with a toupe
iris1 (Dec 26, 2007 9:30:45 PM)
Does anyone on the chat know of any past chatters that are now in Nursing Homes?
suziern (Dec 26, 2007 9:30:53 PM)
Got more news from the Pulmonologist today
bette (Dec 26, 2007 9:30:58 PM)
No
marciamellows (Dec 26, 2007 9:31:16 PM)
Hi suziern! Boy it sure has been a long time. How was your Christmas and how is Billy Dean. It looks like your support group has really taken off successfully. Congradulations.
snaped (Dec 26, 2007 9:31:18 PM)
Fluffys strategy for hair loss is to just keep getting tighter perms
vdoman (Dec 26, 2007 9:31:19 PM)
Hopefully good news Suzzette
barryc (Dec 26, 2007 9:31:20 PM)
corey... I wore the toupe at our daughter's wedding... and people said I looked so young....
suziern (Dec 26, 2007 9:31:43 PM)
BillyDean had an arterial blood gas (ABG) and his carbon dioxide level is 50. They told me today that his body is not trying to correct itself anymore like it used to
marciamellows (Dec 26, 2007 9:31:51 PM)
What news did you get from the pulmonologist today?
Robyn-G (Dec 26, 2007 9:32:05 PM)
Hi Suzette!
bette (Dec 26, 2007 9:32:14 PM)
What does that mean Suzette?
marciamellows (Dec 26, 2007 9:32:20 PM)
I do not know of any past chatters who are now in nursing homes.
suziern (Dec 26, 2007 9:32:43 PM)
He also has a new diagnosis of obstructing asthma, he used to only have Restrictive Airway Disease, but now he has new onset asthma and they said it is obstructing asthma.
suziern (Dec 26, 2007 9:32:52 PM)
Hey Robyn!
vdoman (Dec 26, 2007 9:33:14 PM)
MM Susan M is going to be put in Mountain View Nursing Home
yellow (Dec 26, 2007 9:33:15 PM)
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bette (Dec 26, 2007 9:33:22 PM)
I'm so sorry for Billy Dean
barryc (Dec 26, 2007 9:33:25 PM)
Hi Suzette... is BillyDean ok? has the blood gas caused him other medical problems? Give the dude a hug from his friends in Clearwater! We will take him to Disney some day!
suziern (Dec 26, 2007 9:33:26 PM)
It is so confusing to me, I kept them on the phone today for sooo long.
shelly (Dec 26, 2007 9:33:36 PM)
Hi Robyn- how are the girls?
marciamellows (Dec 26, 2007 9:33:49 PM)
suziern, this does not sound like good news. What is normal carbon dioxide levels and what do they intend to do about all of these new problems?
yellow (Dec 26, 2007 9:33:53 PM)
good evening
Robyn-G (Dec 26, 2007 9:34:05 PM)
The girls are pretty good. I think though, that Janelle is not too far behind Joe in progression
Robyn-G (Dec 26, 2007 9:34:17 PM)
Hi Yellow - are you new here?
bette (Dec 26, 2007 9:34:19 PM)
VDO, do you know when that is happending.
marciamellows (Dec 26, 2007 9:34:24 PM)
vdo, do you think that Suszn M is going to be put in the nursing home temporarily or permanently?
suziern (Dec 26, 2007 9:34:34 PM)
The normal CO2 level on a blood gas is 35-45, they said actually 40 is normal and 45 is too high. BillyDean's is 50.
yellow (Dec 26, 2007 9:34:34 PM)
yes
vdoman (Dec 26, 2007 9:34:40 PM)
BC Kev, Susan Kev's Buddy and I are doing Disney this weekend
lost1112 (Dec 26, 2007 9:34:41 PM)
hey yellow how are you
Robyn-G (Dec 26, 2007 9:34:47 PM)
Welcome - please introduce yourself
shelly (Dec 26, 2007 9:34:53 PM)
yellow tell us about yourself
yellow (Dec 26, 2007 9:34:59 PM)
doing wonderful, thank you
barryc (Dec 26, 2007 9:35:02 PM)
have a great Disney time!
yellow (Dec 26, 2007 9:35:10 PM)
yellow is my favorite color
shelly (Dec 26, 2007 9:35:14 PM)
caregiver or MMD yellow?
suziern (Dec 26, 2007 9:35:19 PM)
MM, they said there is nothing they can offer.
vdoman (Dec 26, 2007 9:35:33 PM)
It sounds like a pernament placement they can not get her weaned off Vent
marciamellows (Dec 26, 2007 9:35:35 PM)
suziern, so Billy Deans CO2 level is too high, not too low.
barryc (Dec 26, 2007 9:35:45 PM)
yellow... are you involved with MMD or know someone who is?
yellow (Dec 26, 2007 9:36:10 PM)
I'm here tonight to see what kind of support there is
marciamellows (Dec 26, 2007 9:36:22 PM)
yellow, please introduce yourself. Do you or a family member have MMD?
shelly (Dec 26, 2007 9:36:26 PM)
you are at the right place
Robyn-G (Dec 26, 2007 9:36:33 PM)
we try to be very supportive, Yellow. we try to cover just about everything.
lost1112 (Dec 26, 2007 9:36:36 PM)
so do you have MMD yellow or someone else you know
barryc (Dec 26, 2007 9:36:40 PM)
you are in the best place
yellow (Dec 26, 2007 9:36:41 PM)
I'm looking to see how you encourage each other in daily living
Robyn-G (Dec 26, 2007 9:36:42 PM)
Lots of good resources
shelly (Dec 26, 2007 9:36:46 PM)
I look forward to this chat all week
bette (Dec 26, 2007 9:36:51 PM)
VDO why did you hear about Susan. I talked to her in early November and everything was O.K.
barryc (Dec 26, 2007 9:37:07 PM)
shelly,,,, you are a gem. And so is Bette... Ms. CA
Robyn-G (Dec 26, 2007 9:37:09 PM)
YEllow - I know our family is adding adaptive devices to our home for daily use to help make tasks easier
yellow (Dec 26, 2007 9:37:14 PM)
I don't have MMD
marciamellows (Dec 26, 2007 9:37:24 PM)
bette, we have been getting updates from Steven for awhile now. I just assumed that you were receiving them also.
Robyn-G (Dec 26, 2007 9:37:25 PM)
VDO and Bette - who is Susan?
vdoman (Dec 26, 2007 9:37:27 PM)
Talked to Steve yesterday
yellow (Dec 26, 2007 9:37:30 PM)
I'm a caregiver
shelly (Dec 26, 2007 9:37:30 PM)
thanks Barry! too sweet- am I a diamond?
Robyn-G (Dec 26, 2007 9:37:42 PM)
I'm a caregiver too, Yellow.
barryc (Dec 26, 2007 9:37:50 PM)
you are a brilliant diamond.
Robyn-G (Dec 26, 2007 9:37:57 PM)
this group is comprised of caregivers and those affected with MMD
marciamellows (Dec 26, 2007 9:38:01 PM)
yellow, who in your family has MMD?
shelly (Dec 26, 2007 9:38:06 PM)
ooooh- my favorite
iris1 (Dec 26, 2007 9:38:10 PM)
Yellow, I am my husbands caregiver.
barryc (Dec 26, 2007 9:38:21 PM)
yellow... I am a caregiver, too. My wife and son have MMD.
marciamellows (Dec 26, 2007 9:38:21 PM)
Steven and Susan Masarsky are members of our support group.
Robyn-G (Dec 26, 2007 9:38:25 PM)
Yellow - I am my husband and two stepdaughters caregiver
Robyn-G (Dec 26, 2007 9:38:36 PM)
have I met them Marcia?
suziern (Dec 26, 2007 9:38:43 PM)
They started him on Pulmicort as his maintenance and albuterol as his rescue drug for the new onset obstructing asthma, every 12 hours via nebulizer, and they said that is indefinately. The CO2 problem though they can't do anything about. They said just keep working with the Bipap, nothing else to offer.
vdoman (Dec 26, 2007 9:38:45 PM)
Robyn Susan Mazatsky has MMD and her husband and I went to the same High school
Robyn-G (Dec 26, 2007 9:39:02 PM)
wow Vdo - small world
shelly (Dec 26, 2007 9:39:02 PM)
Robyn- does their biological mother help out?
suziern (Dec 26, 2007 9:39:05 PM)
Does anyone else with MMD know their Carbon Dioxide levels?
marciamellows (Dec 26, 2007 9:39:10 PM)
robyn, probably not. They have not been active members for awhile now, but they did attend Suzy's funeral in Fresno.
Robyn-G (Dec 26, 2007 9:39:23 PM)
thanks marcia
bette (Dec 26, 2007 9:40:20 PM)
I do not know my Carbon dioxide levels.
barryc (Dec 26, 2007 9:40:34 PM)
wow, suzette... that is a lot to contend with... and it would happen around the holidays! Why cannot they do nothing about CO2 problem... is it a blood gas problem or is it due to someithing else about his breathing?
lost1112 (Dec 26, 2007 9:40:38 PM)
never thought to have mine checked
snaped (Dec 26, 2007 9:40:44 PM)
Suzie...is this at Riley or somewhere else?
yellow (Dec 26, 2007 9:40:49 PM)
I reluctantly say, that I am not familiar with MMD. I take care of an elderly woman and am looking for supportive ways to communicate to her. I do have CMT myself and that group is small this evening so I thought I would check you out while I was here
marciamellows (Dec 26, 2007 9:41:04 PM)
robyn, not only did Steven and vdo go to the same high school, but they both married girls named Susan, both Susans had MMD and they each had one son. The Masarsky's son does not have MMD.
shelly (Dec 26, 2007 9:41:32 PM)
I have no idea what my CO2 level is
suziern (Dec 26, 2007 9:41:34 PM)
Snaped, he goes to the MD Clinic at St. V Children's, newly name Peyton Manning Children's Hospital
suziern (Dec 26, 2007 9:41:51 PM)
Barry, he also flunked his swallow study and his upper GI done last week
suziern (Dec 26, 2007 9:42:08 PM)
It has been a rough few weeks, tons of testing, and then all the results are not good.
lost1112 (Dec 26, 2007 9:42:20 PM)
well this is the right place yellow
yellow (Dec 26, 2007 9:42:32 PM)
I wasn't sure
bette (Dec 26, 2007 9:42:34 PM)
How is Billy Dean handling it all.
snaped (Dec 26, 2007 9:42:39 PM)
ok,,,Good I'm not a big Riley fan....
marciamellows (Dec 26, 2007 9:42:41 PM)
suziern, is Billy dean going to get a G-Tube?
vdoman (Dec 26, 2007 9:42:45 PM)
I am so sorry Suzzette A BIG HUG FROM ME
suziern (Dec 26, 2007 9:42:47 PM)
It is a Hypoventilation issue Barry, with the High CO2, he retains way too much carbon dioxide
suziern (Dec 26, 2007 9:43:24 PM)
he does not exhale the CO2 like we do
yellow (Dec 26, 2007 9:43:29 PM)
where is the carbon dioxide currently coming from, Suziern
shelly (Dec 26, 2007 9:43:34 PM)
barry- sent you an e-mail just now
barryc (Dec 26, 2007 9:43:36 PM)
wow suzette.... not fair... BillyDean is such a good boy and a trouper. Tell me what would be really nice surprise gift and I will send it to Billy Dean with our holiday love.
lost1112 (Dec 26, 2007 9:43:48 PM)
Yellow if you have questions just ask them someone will answer them
suziern (Dec 26, 2007 9:44:08 PM)
The carbon dioxide that he should be exhaling with each expiration, he doesn't get rid of it like he should, like we do
bette (Dec 26, 2007 9:44:08 PM)
Can't they give him more oxygen to counter act the Carbon Dioxide?
Robyn-G (Dec 26, 2007 9:44:44 PM)
see you all next week, goodnight
Robyn-G (Dec 26, 2007 9:44:46 PM)
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suziern (Dec 26, 2007 9:44:48 PM)
You know what Bette, I asked them about oxygen again, they said it is contraindicated in his case
yellow (Dec 26, 2007 9:45:05 PM)
isn't there a room 'humidifier'-type device that can be placed in the bedroom?
shelly (Dec 26, 2007 9:45:10 PM)
that sounds crazy that oxygen wouldn't help
bette (Dec 26, 2007 9:45:15 PM)
Oh. That was alll I could thing of.
vdoman (Dec 26, 2007 9:45:22 PM)
Got to go for Dinner now see everyone next year
lost1112 (Dec 26, 2007 9:45:35 PM)
night VDO
bette (Dec 26, 2007 9:45:37 PM)
Happy New Year VDO
vdoman (Dec 26, 2007 9:45:41 PM)
HAPPY NEW YEAR!
suziern (Dec 26, 2007 9:45:43 PM)
They said that is not his problem, his carbon dioxide is his problem. It really confuses me. As soon as I think I understand it really well, it seems I am lost again
yellow (Dec 26, 2007 9:45:47 PM)
goodnight vdo
iris1 (Dec 26, 2007 9:45:53 PM)
What does high CO2 do?
barryc (Dec 26, 2007 9:45:54 PM)
yellow... I am a psychologist (near retirement)... I gave a presentation at our MMD national conference about caregiving and Quest Magazine also has articles about caregiving. With a little research, you could get this stuff and more.
shelly (Dec 26, 2007 9:45:54 PM)
ditto
yellow (Dec 26, 2007 9:46:12 PM)
I get Quest
yellow (Dec 26, 2007 9:46:21 PM)
thanks
vdoman (Dec 26, 2007 9:46:24 PM)
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marciamellows (Dec 26, 2007 9:46:52 PM)
yellow, where do you live?
shelly (Dec 26, 2007 9:46:52 PM)
I get Quest, but it is published bi-monthly?
lost1112 (Dec 26, 2007 9:47:20 PM)
it sounds like it is not a problem getting o2 the problem is he is not exhalling the co2
yellow (Dec 26, 2007 9:47:28 PM)
barryc, which publication should I look for?
shelly (Dec 26, 2007 9:47:44 PM)
is he on a ventilator?
suziern (Dec 26, 2007 9:48:50 PM)
iris, with high CO2 levels, bicarbonate is 'held on to' and metabolic alkalosis results in the body.
yellow (Dec 26, 2007 9:48:58 PM)
iris1 - did your question get addressed about too high levels of CO2? I would like to know the answer too?
suziern (Dec 26, 2007 9:49:08 PM)
yes lost
suziern (Dec 26, 2007 9:49:13 PM)
no, just uses Bipap
shelly (Dec 26, 2007 9:49:26 PM)
ok
shelly (Dec 26, 2007 9:49:32 PM)
at night?
barryc (Dec 26, 2007 9:49:33 PM)
yellow... I wish I could just email you the caregiving article, but my computer hard drive crashed! I am trying to retrieve info now. Come back next week and perhaps I will have retrieved the article. Also, I could put you in touch with Alice Gunderson who organizes the MMD national conference... she would have the caregiving article, too.... if anyone else has it, please let me knonw!
lost1112 (Dec 26, 2007 9:49:44 PM)
that would be why they said no to more oxy
shelly (Dec 26, 2007 9:49:44 PM)
I don't know about bipap
marciamellows (Dec 26, 2007 9:49:49 PM)
What are Billy Dean's symptoms? How are these problems physically affecting him?
suziern (Dec 26, 2007 9:49:54 PM)
Thanks Barry, he got sooo much from Santa Claus for Christmas.
shelly (Dec 26, 2007 9:50:31 PM)
I hope Santa was good to all of you and Chanukkah too.
yellow (Dec 26, 2007 9:50:48 PM)
how did you find out about MMD in child, suziern?
barryc (Dec 26, 2007 9:51:03 PM)
well, he Suzette, he does not have a gift from a Jewish Santa Claus! Think about it and let me know... maybe tickets for Disney for 2008 MMD conference for you and him?
lost1112 (Dec 26, 2007 9:51:12 PM)
has anyone heard from the lady in NH and how she is doing?
suziern (Dec 26, 2007 9:51:35 PM)
Yellow, took 5 years to get a correct diagnosis, finally did the Genetic Testing for MMD at 10 years old and that was what it was, his CTG repeat is 681.
shelly (Dec 26, 2007 9:51:37 PM)
Have y'all heard of Soul Santa?
snaped (Dec 26, 2007 9:52:07 PM)
Suzie,does BillyDean play ant instruments? I hear wind ones like a harmonica help reduce CO2
yellow (Dec 26, 2007 9:52:09 PM)
is it congential?
bette (Dec 26, 2007 9:52:10 PM)
Lost, we haven't heard from her in a while.
marciamellows (Dec 26, 2007 9:52:14 PM)
barry, maybe we should call you Chanu Claus.
bette (Dec 26, 2007 9:52:16 PM)
No shelly.
barryc (Dec 26, 2007 9:52:21 PM)
is Soul Santa a black jazz guy named Louie Armstrong? one of my favorites.
yellow (Dec 26, 2007 9:52:33 PM)
wow snaped what a great idea
shelly (Dec 26, 2007 9:52:44 PM)
he is a black Santa and arrives in different ways- helicopter, boats etc. . .
barryc (Dec 26, 2007 9:52:50 PM)
thanx marcia.. very cute, from a cutie
shelly (Dec 26, 2007 9:52:58 PM)
I like Lous too barry
yellow (Dec 26, 2007 9:53:05 PM)
Oh Louie Armstrong....yeah baby
marciamellows (Dec 26, 2007 9:53:14 PM)
Who is in NH? elliebedilia?
suziern (Dec 26, 2007 9:53:15 PM)
It is congenital/child onset they told me in New York. Snaped, he got a drum set and a harmonica for Christmas, he loves them, great idea!
barryc (Dec 26, 2007 9:53:22 PM)
shelly, you have to come visit us in Clearwater,,,, when you see your uncle.
lost1112 (Dec 26, 2007 9:53:30 PM)
yes thats the one
shelly (Dec 26, 2007 9:53:33 PM)
I like Nat King Cole too- all the Christmas music he sings is amazing
suziern (Dec 26, 2007 9:53:41 PM)
Barry, I am hoping to take the Youth group someplace in 2008. We had a great time at Universal.
marciamellows (Dec 26, 2007 9:53:55 PM)
yellow, where do you live?
lost1112 (Dec 26, 2007 9:54:00 PM)
yes MM
shelly (Dec 26, 2007 9:54:07 PM)
I promise I will Barry. Maybe my Spring Break. I'll stay at their beach house with my husband.
yellow (Dec 26, 2007 9:54:09 PM)
Nat King Cole...now you're aging us
yellow (Dec 26, 2007 9:54:30 PM)
pacific coast
shelly (Dec 26, 2007 9:54:30 PM)
I'm only 34- 35 on January 7
barryc (Dec 26, 2007 9:54:32 PM)
by the way, shelly, our daughter (with hair issues) and her family arrive in Tallahassee tonight. Staying in a lakeside cabin on Lake Talquin. Did you know that Lake Talquin used to be owned by Florida Progress Corp (our mid FL utility)
marciamellows (Dec 26, 2007 9:54:44 PM)
yellow, where on the Pacific Coast?
suziern (Dec 26, 2007 9:54:45 PM)
Barry, tell me about the Jewish faith.
shelly (Dec 26, 2007 9:55:07 PM)
NO WAY!!!!! I know Lake Talquin!!!!!
shelly (Dec 26, 2007 9:55:35 PM)
What is she doing up here?
marciamellows (Dec 26, 2007 9:55:37 PM)
suziern, vdo, bette, me and I am sure others on the chat are also Jewish.
barryc (Dec 26, 2007 9:55:42 PM)
Yes, Lake Talquin... arrives tonight. My daughter's husband has family in Tallahassee.
shelly (Dec 26, 2007 9:56:06 PM)
I'm a transplant to TLH- been here since '91- native Flridian
snaped (Dec 26, 2007 9:56:08 PM)
Is he getting any harmonica lessions? There's a local guy who does them by phone,I'll see if hes still around if you are interested
lost1112 (Dec 26, 2007 9:56:14 PM)
and lost is jewish as well
marciamellows (Dec 26, 2007 9:56:35 PM)
snaped, that sounds funny. Harmonica lessons by phone.
shelly (Dec 26, 2007 9:56:46 PM)
I play the kazoo
snaped (Dec 26, 2007 9:56:49 PM)
NO HES GREAT!
marciamellows (Dec 26, 2007 9:56:50 PM)
yellow, where on the Pacific Coast do you live?
yellow (Dec 26, 2007 9:57:13 PM)
I'm not comfortable saying
shelly (Dec 26, 2007 9:57:21 PM)
that's ok
snaped (Dec 26, 2007 9:57:27 PM)
been on albums and everything...I lost patience and gave up :(
marciamellows (Dec 26, 2007 9:57:45 PM)
yellow, I was just asking because Bette and I are both from Southern California.
shelly (Dec 26, 2007 9:58:00 PM)
Is baclofen a pain med?
yellow (Dec 26, 2007 9:58:13 PM)
No offense given, none taken
marciamellows (Dec 26, 2007 9:58:20 PM)
shelly, when Jeff retired I gave him a huge retirement party and bought kazoos for everyone in attendance. It was so much fun!!!
barryc (Dec 26, 2007 9:58:30 PM)
suzette... that will have to be a discussion when I see you. Julie is much more the Jew than I am. But I very much admire the Jewish people, their history, and their destiny in Israel. I have a book on the history of the Jewish people that is eye openning.
shelly (Dec 26, 2007 9:58:40 PM)
I was only kidding, but I have played the kazoo
shelly (Dec 26, 2007 9:58:59 PM)
me too Barry
yellow (Dec 26, 2007 9:59:14 PM)
So. California.....I lived 4 blocks from Disneyland in the 90's
marciamellows (Dec 26, 2007 9:59:17 PM)
suzette, and Jeff is much more the Jew than I am.
marciamellows (Dec 26, 2007 9:59:46 PM)
yellow, I love in Los Angeles and Bette lives in Valley Village (formerly North Hollywood).
barryc (Dec 26, 2007 9:59:52 PM)
marcia, you are a gambler... where is that written in scripture?
marciamellows (Dec 26, 2007 9:59:54 PM)
thats live.
bette (Dec 26, 2007 10:00:00 PM)
Suzette, we will all have to have a conference call. Mark and I are pretty involved in some aspects of our Jewish Lives.
shelly (Dec 26, 2007 10:00:02 PM)
I am married to a Half Jew his Jew-ish
shelly (Dec 26, 2007 10:00:29 PM)
Half Russian Jew
suziern (Dec 26, 2007 10:00:35 PM)
sorry, I am back now, let me catch up real quick
snaped (Dec 26, 2007 10:00:38 PM)
http://cache.consumerist.com/assets/resources/2007/12/wellwhoops.jpg funiest jewish ad aver
marciamellows (Dec 26, 2007 10:00:45 PM)
I had a Japanese friend who was married to a Jewish husband. He either called her a Jewpanese or an orienta.
shelly (Dec 26, 2007 10:00:53 PM)
OMG
bette (Dec 26, 2007 10:01:02 PM)
Suzette, I am on Skyp now.
barryc (Dec 26, 2007 10:01:11 PM)
my daughter who practices judaism is married to a non-jew... a think religious tolerance and tolerance for non-believers would all the world so much better.
shelly (Dec 26, 2007 10:01:13 PM)
my husband is a bit pigeon toed. His bf called him a
shelly (Dec 26, 2007 10:01:20 PM)
Jewish pigeon
bette (Dec 26, 2007 10:01:45 PM)
Amen Barry.
suziern (Dec 26, 2007 10:01:55 PM)
Baclofen treats spasticity
barryc (Dec 26, 2007 10:01:56 PM)
bette...you have class.
shelly (Dec 26, 2007 10:01:59 PM)
his bf is biracial so he calls him several names not appropriate for chat
marciamellows (Dec 26, 2007 10:02:04 PM)
My daughter is jewish, but married someone who is not. Their ceremony was officiated by a Priest and a Rabbi. It was BEAUTIFUL.
suziern (Dec 26, 2007 10:02:13 PM)
many people with multiple sclerosis use it and Cerebral Palsy
shelly (Dec 26, 2007 10:02:39 PM)
I've been to a cermony like that-my cousin. Tell me about the breaking of the glass.
suziern (Dec 26, 2007 10:02:58 PM)
I would like to learn more about the Jewish faith, as I have made a lot of new friends who are Jewish over the past few years
suziern (Dec 26, 2007 10:03:34 PM)
I have to go, I will talk to you all next week, GREAT to chat tonight. Goodnight.
yellow (Dec 26, 2007 10:03:36 PM)
I understand the Jewish faith is steeped in tradition
suziern (Dec 26, 2007 10:03:39 PM)
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bette (Dec 26, 2007 10:03:54 PM)
One of the reasons we break the glass is to remind us even in joy we must remember that there is also sadness in peoples lives.
lost1112 (Dec 26, 2007 10:04:05 PM)
i think all religions are
shelly (Dec 26, 2007 10:04:18 PM)
I heard something different.
marciamellows (Dec 26, 2007 10:04:25 PM)
shelly, I think that the significance of breaking the glass at the end of the marriage ceremony is to show you how fragile a marriage can be.
shelly (Dec 26, 2007 10:04:35 PM)
thanks for telling me the right reason
barryc (Dec 26, 2007 10:04:41 PM)
breaking of the glass is a tradition... it has not a religious significance... but it defefinetly adds a positive spirit to the end of the ceremony. Glad I did not miss the glass at my wedding! Julie would be talking about it forever!
shelly (Dec 26, 2007 10:05:05 PM)
I've heard that too and that all the broken glass would be so hard to put together or something like that
lost1112 (Dec 26, 2007 10:05:31 PM)
took my step dad 3 tries to break it
bette (Dec 26, 2007 10:05:35 PM)
Theu say ask two Jews one question and you will get three
yellow (Dec 26, 2007 10:05:37 PM)
what is the deal about breaking the glass?
bette (Dec 26, 2007 10:05:53 PM)
answers
lost1112 (Dec 26, 2007 10:06:09 PM)
lol true bettie
shelly (Dec 26, 2007 10:06:47 PM)
I thought I would have liked to have it incorporated in our wedding, but since my husband is not a practicing Jew, we skipped it
shelly (Dec 26, 2007 10:07:16 PM)
barry- did you get my e-mail?
bette (Dec 26, 2007 10:07:27 PM)
Yellow, if you want to know the rabbinic tradition you should go to Ask the Rabbi.com. I think that sight will get you answers.
barryc (Dec 26, 2007 10:07:46 PM)
whatever they say... one fact is true... Jewish women soldiiers in Israel are soooo attractive... and all the Isaaeli soldiers get taught the history of Israel. I was in Israel with Julie and took part in on the training sessions on Israel history... what a way to train an army!
shelly (Dec 26, 2007 10:08:03 PM)
cool
lost1112 (Dec 26, 2007 10:08:22 PM)
well its been nice chating but it is my bed time so good night all
shelly (Dec 26, 2007 10:08:26 PM)
Anyone tried the new Nintendo Wii?
barryc (Dec 26, 2007 10:08:33 PM)
shelly,,, I am not on my emails.. will check after the chat.
shelly (Dec 26, 2007 10:08:38 PM)
ok
yellow (Dec 26, 2007 10:08:45 PM)
wow barryc that's wonderful
yellow (Dec 26, 2007 10:08:59 PM)
goodnight lost and thank you
bette (Dec 26, 2007 10:09:00 PM)
TThat must have been r eally interesting.
marciamellows (Dec 26, 2007 10:09:05 PM)
My daughter has Nintendo Wii. She has a game called Guitar Hero. It is so LOUD
shelly (Dec 26, 2007 10:09:26 PM)
I played boxing and bowling last night and I'm sore all over
snaped (Dec 26, 2007 10:09:31 PM)
i hate that game...no way for me to play
lost1112 (Dec 26, 2007 10:09:31 PM)
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barryc (Dec 26, 2007 10:09:39 PM)
well... time to say nighty night. Glad you came to our chat, YELLOW... come back again.
snaped (Dec 26, 2007 10:09:46 PM)
its toooo fast
shelly (Dec 26, 2007 10:09:48 PM)
it was really fun- I knocked my husband out twice in boxing
barryc (Dec 26, 2007 10:09:48 PM)
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yellow (Dec 26, 2007 10:09:53 PM)
that shows how much fun you had shelly
shelly (Dec 26, 2007 10:10:04 PM)
and how much I need to work out
shelly (Dec 26, 2007 10:10:52 PM)
I goota go! Have a very Happy New Year!
bette (Dec 26, 2007 10:11:01 PM)
Shelly, I haven't been able to bowl in about twenty years
yellow (Dec 26, 2007 10:11:06 PM)
I am leaving now to get more done before calling it a night. Do you meet every night? weekly?
shelly (Dec 26, 2007 10:11:10 PM)
try the Wii
bette (Dec 26, 2007 10:11:18 PM)
We meet weekly.
yellow (Dec 26, 2007 10:11:30 PM)
Good night shelly
shelly (Dec 26, 2007 10:11:32 PM)
easier than the realy bowling
marciamellows (Dec 26, 2007 10:11:39 PM)
yellow, we meet every Wednesday from 5:45 until 7:15 Pacific time. Please come back.
shelly (Dec 26, 2007 10:11:49 PM)
Night-Night!
shelly (Dec 26, 2007 10:11:53 PM)
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yellow (Dec 26, 2007 10:12:11 PM)
thank you all for your flexability and support.
bette (Dec 26, 2007 10:12:16 PM)
I' meant real bowing.
yellow (Dec 26, 2007 10:12:16 PM)
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marciamellows (Dec 26, 2007 10:13:11 PM)
Is anyone who is left doing anything special for New Years Eve?
iris1 (Dec 26, 2007 10:13:49 PM)
We stay home, too many crazy drivers out on New Years EVe.
snaped (Dec 26, 2007 10:14:01 PM)
soory,We are boring here...What are you doing?
bette (Dec 26, 2007 10:14:22 PM)
We're staying in. Watch TV, hopefully stay awake for midnight then go to bed. Same thing we do most nights.
marciamellows (Dec 26, 2007 10:14:24 PM)
We do not usually go out New Year's Eve. Afraid of drunk drivers.
iris1 (Dec 26, 2007 10:14:46 PM)
We are not able to stay up until midnight.
bette (Dec 26, 2007 10:14:58 PM)
MM, should I call you at midnight, we can toast together.
marciamellows (Dec 26, 2007 10:15:05 PM)
HAPPY NEW YEAR to everyone.
marciamellows (Dec 26, 2007 10:15:15 PM)
Yes, bette, give me a call at midnight.
marciamellows (Dec 26, 2007 10:15:41 PM)
Well, I think that I have to go and start unpacking and doing laundry.
marciamellows (Dec 26, 2007 10:16:21 PM)
See you all next year.
iris1 (Dec 26, 2007 10:16:22 PM)
"HAPPY NEW YEAR" Let's HOPE for a CURE this year.
bette (Dec 26, 2007 10:16:23 PM)
I'm going to call Steve and then watch Blood Diamond with Mark. Happy newyear.
bette (Dec 26, 2007 10:16:36 PM)
Amen Iris.
bette (Dec 26, 2007 10:16:40 PM)
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marciamellows (Dec 26, 2007 10:16:54 PM)
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snaped (Dec 26, 2007 10:19:57 PM)
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iris1 (Dec 26, 2007 10:20:37 PM)
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PaRay (Dec 26, 2007 10:37:43 PM)
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