Myotonic Chat Group
PaRay (Dec 24, 2008 7:44:25 PM)
bette (Dec 24, 2008 7:51:50 PM)
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PaRay (Dec 24, 2008 7:52:12 PM)
Hey Bette
bette (Dec 24, 2008 7:52:57 PM)
Hi Ray. Are you doing anything with your family for Christmas?
PaRay (Dec 24, 2008 7:53:30 PM)
Yep, Everyone will be here inclucing my mother in law.
bette (Dec 24, 2008 7:54:12 PM)
Sound good. Hope you have a really Merry One and a Happy and Healthy New Year for a change.
PaRay (Dec 24, 2008 7:54:26 PM)
How have your holidays been?
bette (Dec 24, 2008 7:55:00 PM)
They have been quiet. No parties but we do light the candles every night.
PaRay (Dec 24, 2008 7:55:35 PM)
We had a candle light serrvice this evening at church.
bette (Dec 24, 2008 7:56:09 PM)
I really loved your poem for Alice & Ed. Have you heard from them. I have called a couple of times but Alice has not called back.
PaRay (Dec 24, 2008 7:56:45 PM)
It has been several days since I talked to her.
bette (Dec 24, 2008 7:57:20 PM)
I don't think I have talked with her since the conference. How are they doing.
PaRay (Dec 24, 2008 7:57:45 PM)
Had been doing good.
bette (Dec 24, 2008 7:58:04 PM)
Glad to hear that.
PaRay (Dec 24, 2008 7:58:40 PM)
That was after Alice and her sis got over the flu or what ever after the conference.
fluffy (Dec 24, 2008 7:59:41 PM)
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PaRay (Dec 24, 2008 7:59:59 PM)
Fluffy is here!!!!!
fluffy (Dec 24, 2008 8:00:45 PM)
hi paray and bette how are you tonight?
PaRay (Dec 24, 2008 8:01:15 PM)
Doing good here. A little damp this evening.
bette (Dec 24, 2008 8:01:25 PM)
I'm looking forward tomorrow. We are helping out to feed the homeless. Today we helped with the "pre" set up. We filled bags with tolities and then all the tables were set up with tableclothes, candy canes, and small christmas decorations.
bette (Dec 24, 2008 8:01:38 PM)
High Fluffy. How are you doing?
fluffy (Dec 24, 2008 8:01:57 PM)
it is cold here we have freezing rain and a little snow
PaRay (Dec 24, 2008 8:02:26 PM)
Bette Do you help at a shelter?
bette (Dec 24, 2008 8:02:40 PM)
I can't compare our cold to yours but for us it has been cold and we expect rain tomorrow.
PaRay (Dec 24, 2008 8:03:27 PM)
We had a wind chill of about minus 10 last sunday morning.
bette (Dec 24, 2008 8:03:38 PM)
This is sponsored by a temple in Hollywood. They serve at a church. I don't know if they feed any other time of the year.
fluffy (Dec 24, 2008 8:04:03 PM)
I finished my shoppping today but Mike did everything I just got a couple gifts and stocking stuffers
bette (Dec 24, 2008 8:04:28 PM)
There is a website called Big Sunday that has volunteer opportunies all year round so if you want to do something you can.
PaRay (Dec 24, 2008 8:05:04 PM)
Thats interesting.
bette (Dec 24, 2008 8:05:51 PM)
It's really nice. I don't know if they have anything like it in your neighborhood.
bette (Dec 24, 2008 8:06:21 PM)
I've been told this is the 25th year the temple has done this.
PaRay (Dec 24, 2008 8:06:29 PM)
We have several shelters that serve meals.
fluffy (Dec 24, 2008 8:06:50 PM)
we are going nto my mother-in -laws tomorrow for Christmas and dinner and Saturday we are having Christmas on my side of the family
PaRay (Dec 24, 2008 8:07:14 PM)
The local barber school was giving free hair cuts today to the homeless.
bette (Dec 24, 2008 8:07:32 PM)
We also have those but I think they are more well known and all the stars go there to help so I figure we are needed more in the less well known places.
shelly (Dec 24, 2008 8:07:33 PM)
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fluffy (Dec 24, 2008 8:07:40 PM)
HI shelly
shelly (Dec 24, 2008 8:07:53 PM)
hi there!
PaRay (Dec 24, 2008 8:07:59 PM)
Hey Shelly.
shelly (Dec 24, 2008 8:08:04 PM)
Merry Christmas eve!
PaRay (Dec 24, 2008 8:08:48 PM)
Shelly...Do you think santa will come or have you been a bad girl?
bette (Dec 24, 2008 8:09:02 PM)
HI Shelly. If you have no earth shattering comments or questions on MMD and how you are doing we are sharing what we are doing during the holidays.
shelly (Dec 24, 2008 8:09:20 PM)
There is snow all around here in MASS.Nice change of scenery for a Native Floridian.
shelly (Dec 24, 2008 8:09:44 PM)
Ray- I ahve no idea what you are talking about. I have been good all year.
shelly (Dec 24, 2008 8:10:14 PM)
Tomorrw, we will open presents and eat turkey and so many desserts
PaRay (Dec 24, 2008 8:10:15 PM)
I don't think that I believe that!!!!!
bette (Dec 24, 2008 8:10:24 PM)
Shelly, are you living in Mass or just visiting.
bette (Dec 24, 2008 8:10:44 PM)
We are helping to serve the homeless tomorrow.
shelly (Dec 24, 2008 8:10:47 PM)
we are just visiting- my husband greew up here
shelly (Dec 24, 2008 8:11:05 PM)
I want to do that Bette- for either Thanksgiving or Christmas
bette (Dec 24, 2008 8:11:18 PM)
O.K. I'm glad you are enjoying the view and visit.
shelly (Dec 24, 2008 8:11:21 PM)
I hope I don't fall i nthe snow and ice
bette (Dec 24, 2008 8:11:38 PM)
Amen Shelly.
PaRay (Dec 24, 2008 8:11:43 PM)
Don't eat the yellow snow.
shelly (Dec 24, 2008 8:11:46 PM)
I always wear my AFO's and I've been extra cautious
shelly (Dec 24, 2008 8:11:54 PM)
LOL Ray!!!!
shelly (Dec 24, 2008 8:12:20 PM)
One good aspect about the AFOs is that they keep my legs really warm
shelly (Dec 24, 2008 8:12:27 PM)
but they are not too hot in the summer
shelly (Dec 24, 2008 8:13:08 PM)
I did sort of fall up the stairs while carrying OJ to bed
shelly (Dec 24, 2008 8:13:13 PM)
spilled the oj
shelly (Dec 24, 2008 8:13:19 PM)
I was not happy
fluffy (Dec 24, 2008 8:13:36 PM)
snaped eats yellow snow > http://www.youtube.com/watch?v=Y3MXmmMNdZM
bette (Dec 24, 2008 8:13:44 PM)
Sounds messy, glad you were o.k.
shelly (Dec 24, 2008 8:13:54 PM)
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shelly (Dec 24, 2008 8:14:06 PM)
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shelly (Dec 24, 2008 8:14:13 PM)
what happened?
shelly (Dec 24, 2008 8:14:18 PM)
It was a mess
shelly (Dec 24, 2008 8:14:36 PM)
I woke Ken to help me clean up and he was suc ha grouch
bette (Dec 24, 2008 8:14:39 PM)
It looks like you got kicked off. Glad you are back
shelly (Dec 24, 2008 8:14:53 PM)
I was trying to watch Ray's video
shelly (Dec 24, 2008 8:15:28 PM)
who here used a cane and how do you know you need one?
bette (Dec 24, 2008 8:15:59 PM)
I used one. I got a walking stick for a gift and just gradually grew into it.
shelly (Dec 24, 2008 8:16:32 PM)
I was playing around with one today and I could see how it could help me
bette (Dec 24, 2008 8:16:40 PM)
I took awhile for me to admit I really needed it. I couldn't stand the idea of a cane but a walkingstick was o.k.
shelly (Dec 24, 2008 8:16:47 PM)
I don't think I need one quite yet
shelly (Dec 24, 2008 8:17:08 PM)
If I need a cane, it will be a blinged out one
PaRay (Dec 24, 2008 8:17:18 PM)
You might like the folding kind.
fluffy (Dec 24, 2008 8:17:25 PM)
I have a cane
shelly (Dec 24, 2008 8:17:41 PM)
I want a black one with rhinestones all over it
shelly (Dec 24, 2008 8:17:56 PM)
people wil lstare anyway, why not make it pretty?
bette (Dec 24, 2008 8:18:11 PM)
I made a cheapy once with pvc tubing.
shelly (Dec 24, 2008 8:18:38 PM)
I saw a pink one with flowees and a purple and black one
bette (Dec 24, 2008 8:18:49 PM)
It worked well and you could probably glue anything you wanted to one it.
shelly (Dec 24, 2008 8:19:07 PM)
My typing sucks. I took Vicodin about an hour ago
shelly (Dec 24, 2008 8:19:25 PM)
Even though I had surgery, my endometriosis is still hurting
shelly (Dec 24, 2008 8:19:33 PM)
not supposed to
bette (Dec 24, 2008 8:19:39 PM)
My typing sucks and I haven't taken anything.
shelly (Dec 24, 2008 8:19:46 PM)
the LAST thing I want to do is have more surgery
bette (Dec 24, 2008 8:19:52 PM)
What does the Doc say.
shelly (Dec 24, 2008 8:20:12 PM)
I can get a Lupron shot, but that will send me in to Menopause
shelly (Dec 24, 2008 8:20:23 PM)
I think I will get one anyway
bette (Dec 24, 2008 8:20:28 PM)
Oh.
shelly (Dec 24, 2008 8:20:57 PM)
I have taken a long time to recover. It's 3 months to the day today
shelly (Dec 24, 2008 8:21:20 PM)
I am so tired of this crap
shelly (Dec 24, 2008 8:21:38 PM)
I can only deal with one thing at a time
bette (Dec 24, 2008 8:21:43 PM)
Shelly, I'm so sorry. Does the MMD have anything to do with the slow recovery?
shelly (Dec 24, 2008 8:22:03 PM)
I'll be ok-I don't know if MMD has anything to do with it
shelly (Dec 24, 2008 8:22:13 PM)
at least I could blame it on MMD
shelly (Dec 24, 2008 8:22:24 PM)
who is wearing their bracelet?
bette (Dec 24, 2008 8:22:29 PM)
I blame everything on the MMD
fluffy (Dec 24, 2008 8:23:00 PM)
what bracelet?
bette (Dec 24, 2008 8:23:10 PM)
I'm wearing a medic-alert bracelet, is that what you are talking about?
shelly (Dec 24, 2008 8:23:13 PM)
I wore mine on the plane here and I haven't taken it off except for a shower or bath
shelly (Dec 24, 2008 8:23:21 PM)
the MDF bracelet
bette (Dec 24, 2008 8:23:33 PM)
Is that the blue one?
shelly (Dec 24, 2008 8:23:42 PM)
Royal blue with CURE MMD and the website
marciamellows (Dec 24, 2008 8:23:50 PM)
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shelly (Dec 24, 2008 8:23:51 PM)
I like it
bette (Dec 24, 2008 8:24:05 PM)
Mark wears his all the time. It is far too big for me.
fluffy (Dec 24, 2008 8:24:08 PM)
what is the MDF bracelet? hi mm
shelly (Dec 24, 2008 8:24:15 PM)
who here thinks there will be cure like maybe in 10 years?
PaRay (Dec 24, 2008 8:24:26 PM)
Hey MM
bette (Dec 24, 2008 8:24:28 PM)
Hi Marcia, welcome back to LA. How was Vegas.
shelly (Dec 24, 2008 8:24:30 PM)
hi MM
marciamellows (Dec 24, 2008 8:24:34 PM)
Hi everyone!
bette (Dec 24, 2008 8:24:51 PM)
Shelly, I hope so but I'm not holding my breath.
shelly (Dec 24, 2008 8:24:54 PM)
a cure or jsut better treatment for symptoms?
shelly (Dec 24, 2008 8:25:15 PM)
what a wonderful day that would be
bette (Dec 24, 2008 8:25:15 PM)
I'll take either one.
shelly (Dec 24, 2008 8:25:20 PM)
so hard to imagine
marciamellows (Dec 24, 2008 8:25:21 PM)
Shelly, do you live in Las Vegas or do I have you mixed up with someone else?
shelly (Dec 24, 2008 8:25:29 PM)
no
shelly (Dec 24, 2008 8:25:59 PM)
I'm from Florida, but I'm in Massachusetts now
marciamellows (Dec 24, 2008 8:26:17 PM)
Happy Holidays everyone
shelly (Dec 24, 2008 8:26:22 PM)
I threw a snowball at my husband oday
shelly (Dec 24, 2008 8:26:25 PM)
today
bette (Dec 24, 2008 8:26:42 PM)
That must have been fun.
shelly (Dec 24, 2008 8:26:47 PM)
I tried to throw another, but he made it hit me
marciamellows (Dec 24, 2008 8:27:05 PM)
bette, what does Mark wear all the time that is too big for you?
shelly (Dec 24, 2008 8:27:10 PM)
I think I'll be able to make a snowman tomorrow
shelly (Dec 24, 2008 8:27:29 PM)
the yhave different sixes I think Bette
bette (Dec 24, 2008 8:27:37 PM)
That blue "bracelet" the the Myotonic Foundation gives out.
bette (Dec 24, 2008 8:27:53 PM)
We got it at the conference.
shelly (Dec 24, 2008 8:28:03 PM)
I got two i nthe mail
marciamellows (Dec 24, 2008 8:28:10 PM)
I have never seen a blue bracelet. Where have I been?
shelly (Dec 24, 2008 8:28:24 PM)
Lisa- kaylas mom runs the MDF
PaRay (Dec 24, 2008 8:28:25 PM)
Vegas
shelly (Dec 24, 2008 8:28:36 PM)
she can send you one-go to Myotonic.com
marciamellows (Dec 24, 2008 8:28:43 PM)
PaRay, that is true
bette (Dec 24, 2008 8:28:44 PM)
Not sure, b ut we are glad your back.
bette (Dec 24, 2008 8:29:04 PM)
So, how was Vegas?
shelly (Dec 24, 2008 8:29:08 PM)
the information in the welcome pack she sends out is amazing
shelly (Dec 24, 2008 8:29:22 PM)
Must be like $30 to make
shelly (Dec 24, 2008 8:29:42 PM)
the Peter Harper book is included
bette (Dec 24, 2008 8:30:05 PM)
I think that was what I got at the conference. Peter Harper was not included in that one.
shelly (Dec 24, 2008 8:30:17 PM)
It's a good book
shelly (Dec 24, 2008 8:30:23 PM)
I had it already
marciamellows (Dec 24, 2008 8:30:25 PM)
Running away is not the answer and coming home is definitely not the answer, but I loved being with my girls. I went with Marnie and Robin. Paige, Scott and the babies are in Ohio visiting his family for Christmas.
shelly (Dec 24, 2008 8:30:31 PM)
I'll give a copy to my Mom
bette (Dec 24, 2008 8:30:34 PM)
I bought the book last year.
barryc (Dec 24, 2008 8:30:43 PM)
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shelly (Dec 24, 2008 8:30:53 PM)
Hi Bsrry!
fluffy (Dec 24, 2008 8:30:55 PM)
hi barry
shelly (Dec 24, 2008 8:30:57 PM)
Barry
PaRay (Dec 24, 2008 8:30:59 PM)
Hey Barry
barryc (Dec 24, 2008 8:31:08 PM)
well, well welll...all the regulars
shelly (Dec 24, 2008 8:31:09 PM)
is it still Hanukkah?
bette (Dec 24, 2008 8:31:11 PM)
Hi Barry. How are you guys doing?
marciamellows (Dec 24, 2008 8:31:19 PM)
Hi Barry! How is Julie doing these days?
barryc (Dec 24, 2008 8:31:21 PM)
happy holiday to all
bette (Dec 24, 2008 8:31:30 PM)
Yes it is Shelly.
shelly (Dec 24, 2008 8:31:39 PM)
Mazel Tov
marciamellows (Dec 24, 2008 8:31:47 PM)
Shelly, it is only the 4th night of Chanukah. It goes for 8 nights.
shelly (Dec 24, 2008 8:31:47 PM)
is that the right thing to say?
barryc (Dec 24, 2008 8:31:57 PM)
well, it has been hard.. . julie needs a lot of help and my caregiving days are limiting my life more and more.
shelly (Dec 24, 2008 8:32:01 PM)
you all are so lucky
bette (Dec 24, 2008 8:32:10 PM)
Happy Hanukah usually works.
shelly (Dec 24, 2008 8:32:25 PM)
Mazel tov is like congrats, right?
bette (Dec 24, 2008 8:32:31 PM)
Yes
marciamellows (Dec 24, 2008 8:32:34 PM)
Barry, I thought that you had a lot of outside help.
barryc (Dec 24, 2008 8:32:42 PM)
marcia...glad to see you on tonight!
marciamellows (Dec 24, 2008 8:33:03 PM)
barry, guess where I just got back from?
shelly (Dec 24, 2008 8:33:04 PM)
Barry-you should get in touch with my uncle's family and find out what they do for care
barryc (Dec 24, 2008 8:33:11 PM)
marcia... I do I do...
barryc (Dec 24, 2008 8:33:20 PM)
what did you just get back from?
marciamellows (Dec 24, 2008 8:33:34 PM)
Barry, not what, where.
PaRay (Dec 24, 2008 8:34:12 PM)
Barry you get 3 chances to win.
shelly (Dec 24, 2008 8:34:13 PM)
I know that my uncle has a lady that gets him up, cooks breakfast, helps him bathe, gets him dressed, makes luch and feeds him
barryc (Dec 24, 2008 8:34:19 PM)
ok ok where?
shelly (Dec 24, 2008 8:34:22 PM)
he can't feed himself anymore
barryc (Dec 24, 2008 8:34:34 PM)
shell
barryc (Dec 24, 2008 8:34:38 PM)
shelly,
marciamellows (Dec 24, 2008 8:34:40 PM)
Las Vegas, of course.
shelly (Dec 24, 2008 8:35:30 PM)
where is my Rachael?
shelly (Dec 24, 2008 8:35:39 PM)
she and I have become good friends
barryc (Dec 24, 2008 8:35:48 PM)
shelly, I do have two caregivers who help Julie with that stuff... but I still need to hellp Julie a lot... dressing, even walking around the condo... I cannot go out without making sure I have some help for her...she is no longer steady...balance and walking a bigger problem...
shelly (Dec 24, 2008 8:36:01 PM)
she sent me pajamas for Christmas
shelly (Dec 24, 2008 8:36:10 PM)
does she use a scooter indoors
barryc (Dec 24, 2008 8:36:16 PM)
marcia... I should have guessed... what a goof ball... of course,,,, Ms. Slot Machine!
bette (Dec 24, 2008 8:36:34 PM)
Barry, isn't Julie using her scotter anymore?
marciamellows (Dec 24, 2008 8:36:57 PM)
Even Las Vegas is not the same without my beloved Jeff. I miss him so much.
shelly (Dec 24, 2008 8:37:03 PM)
my uncle is stubborn and walks around barefoot
shelly (Dec 24, 2008 8:37:09 PM)
he falls a lot
shelly (Dec 24, 2008 8:37:18 PM)
the last fall he ended up in rehab
barryc (Dec 24, 2008 8:37:37 PM)
shelly, we just bought a small electric wheelcairr to help her get around the condo, but Julie needs help transfering... on and off the chair... sooo she cannot get along indenpendly any more.
shelly (Dec 24, 2008 8:37:45 PM)
I asked him if he wears his AFOs he said no
shelly (Dec 24, 2008 8:38:04 PM)
he says that he doesn't fall when he wears them.
shelly (Dec 24, 2008 8:38:14 PM)
so why in the hell does he not?
marciamellows (Dec 24, 2008 8:38:28 PM)
Barry, Julie never got used to her AFO's, did she?
bette (Dec 24, 2008 8:38:32 PM)
Shelly, maybe I am stubborn too. I feel safer in bare feet but I do use the afo's outside when I wear shoes.
fluffy (Dec 24, 2008 8:38:39 PM)
I have fallen with mine
shelly (Dec 24, 2008 8:38:46 PM)
sorry for the language,but it makes NO sense why he won't put them on
shelly (Dec 24, 2008 8:39:12 PM)
I have fallen, too, but I slipped on a student's binder that anyone could have slipped on
fluffy (Dec 24, 2008 8:39:15 PM)
I agree
shelly (Dec 24, 2008 8:39:29 PM)
I pulled a muscle in my back
bette (Dec 24, 2008 8:39:32 PM)
I have fallen with my AFO's but never broke anything. I only break when I don't have them on.
barryc (Dec 24, 2008 8:39:39 PM)
no... julie cannot use AFO's... we fittted her for them, but they did not help... she walks mostly on her bones... no muscles left
shelly (Dec 24, 2008 8:39:58 PM)
I am having a terrible time with stairs lately
shelly (Dec 24, 2008 8:40:26 PM)
My Mom has stairs where I grew up and I used to practically leap up them
marciamellows (Dec 24, 2008 8:40:34 PM)
Is Julie still eating and still driving?
shelly (Dec 24, 2008 8:40:38 PM)
there are stairs here
bette (Dec 24, 2008 8:40:42 PM)
I seem to be walking on my big left toe. I get up using the side of my right foot.
barryc (Dec 24, 2008 8:40:54 PM)
julie falls a lot... about once every six weeks or so... even though I watch her like a hawk... it is only a matter of time before she is ging to break something.... not a pleasant thought
marciamellows (Dec 24, 2008 8:41:14 PM)
Also, congradulations to Terry on the weight loss.
shelly (Dec 24, 2008 8:41:15 PM)
Rachael was falling 3 times aweek before she got AFOs
shelly (Dec 24, 2008 8:41:30 PM)
not falling anymore
bette (Dec 24, 2008 8:41:48 PM)
I missed the weight loss. How much has Terry lost?
barryc (Dec 24, 2008 8:42:30 PM)
julie eats fine.. we have a cook because I hate cooking... I even hate putting dishes in the dishwasher! Julie has her caregivers or me do the driving, although she still does drive short distances
fluffy (Dec 24, 2008 8:43:22 PM)
I don't know what I'd do if I couldn't drive
barryc (Dec 24, 2008 8:43:47 PM)
marcia...thanx for note about terry's weight... will pass your remarks on to him... he is looking good... very busy, with friends... and his girlfriend from CT is coming down to stay with him for two weeks starting this weekend.
marciamellows (Dec 24, 2008 8:44:41 PM)
He and you must both be equally proud of him. Is he doing a special diet or just watching?
momma (Dec 24, 2008 8:44:46 PM)
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fluffy (Dec 24, 2008 8:44:57 PM)
hi momma
momma (Dec 24, 2008 8:45:05 PM)
merry christmas to all
barryc (Dec 24, 2008 8:45:08 PM)
fluffy... I know how important driving can be, but Julie's spatial judgment is weakening... all part of brain efficiencies that are affected by MMD... I can see changes in Julie's cognition and I am trained in this area.. .boy, it hurts to see it.
bette (Dec 24, 2008 8:45:10 PM)
Hi momma.
momma (Dec 24, 2008 8:45:11 PM)
hi fluffy
shelly (Dec 24, 2008 8:45:19 PM)
hi much weight did he lose
momma (Dec 24, 2008 8:45:34 PM)
im from dmd chat just want to say merry christmas to all
shelly (Dec 24, 2008 8:45:44 PM)
my cognition has changed Barry
marciamellows (Dec 24, 2008 8:45:50 PM)
Boy Barry, I am sure that I am not spelling this right but De Ja Vu.
bette (Dec 24, 2008 8:45:53 PM)
Merry Christmas to you as well.
barryc (Dec 24, 2008 8:45:53 PM)
terry has lost 20 lbs since he made the trip to CA for MMD gig and still losing.
momma (Dec 24, 2008 8:46:07 PM)
goodnight to all
barryc (Dec 24, 2008 8:46:08 PM)
yes
barryc (Dec 24, 2008 8:46:09 PM)
y
shelly (Dec 24, 2008 8:46:13 PM)
I need to lose about 40 pounds
momma (Dec 24, 2008 8:46:15 PM)
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barryc (Dec 24, 2008 8:46:18 PM)
yes marcia... de ja vu
bette (Dec 24, 2008 8:47:23 PM)
I too ame losing my spatial ability as well on problems with remember words. I don't think I have lost cognitive function though.
barryc (Dec 24, 2008 8:47:25 PM)
shelly,,,,, terry is on a med to help and his doc is bound and determined to get terry's weight down for his health... it will be invaluble, since he cn fall and more weight makes this so much harder and more dangerous.
marciamellows (Dec 24, 2008 8:47:32 PM)
I do not have DDM, but am really worried about not passing my driver's license when it comes up next year because my vision is so bad. I hope it gets renewed automatically, but I think that I already did my limit on those.
shelly (Dec 24, 2008 8:47:45 PM)
what does he take
marciamellows (Dec 24, 2008 8:48:06 PM)
What med is Terry on to help him loose weight?
barryc (Dec 24, 2008 8:48:13 PM)
julie's short term memory is also impacted and she realizes it.
shelly (Dec 24, 2008 8:48:18 PM)
mm- do you have cataracts
barryc (Dec 24, 2008 8:49:24 PM)
marcia.. knew you would ask.. .starts with an e and ends with an e... about 15 letters... but could never remember the name.
marciamellows (Dec 24, 2008 8:49:29 PM)
No I have an eye disease called Kerataconus. The corneas of my eyes are diseased and I need a cornea transplant and I am a chicken. My left eye is okay. They can correct it to 20/40 which is what you need for driving, but my right eye is no longer correctable and my vision in that eye is 20/200.
PaRay (Dec 24, 2008 8:49:54 PM)
Hey guys and girls I am going to knock off in case santa wah
PaRay (Dec 24, 2008 8:50:04 PM)
wants to come
marciamellows (Dec 24, 2008 8:50:18 PM)
Barry, could you please find out the name of the medication and email it to me.
barryc (Dec 24, 2008 8:50:23 PM)
marcia... is the operation dangerous or risky? if not, get on with it, girl
PaRay (Dec 24, 2008 8:50:25 PM)
Have a good holiday.
PaRay (Dec 24, 2008 8:50:32 PM)
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bette (Dec 24, 2008 8:50:36 PM)
Ray, Santa will come wether you on on the computer or not.
shelly (Dec 24, 2008 8:50:44 PM)
mm-I have a friend who has a cornea trans-easy to do
shelly (Dec 24, 2008 8:51:14 PM)
eye surgery is a breeze
barryc (Dec 24, 2008 8:51:19 PM)
marcia... will ask terry to spell it for me and then forwqrd his email along to you....
bette (Dec 24, 2008 8:51:38 PM)
mm, get the transplant, you'll be able to drive the grandkids around.
fluffy (Dec 24, 2008 8:51:59 PM)
I'm getting a little tired I'll talk to you all later Goodnight
marciamellows (Dec 24, 2008 8:52:03 PM)
Barry, it is the same risk as getting any organ transplant. Danger of rejection and it is a very long recuperation. I do not think that they even take the stitches out for a year. When Jeff was alive I had a good excuse because I would not be able to lift or bend, but I really have no excuse now. I am on the transplant list and everytime a cornea becomes available and they call me I chicken out.
shelly (Dec 24, 2008 8:53:11 PM)
they will give you a good drug that will make you not care
fluffy (Dec 24, 2008 8:54:00 PM)
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shelly (Dec 24, 2008 8:54:07 PM)
I still have stitches in my eyes that will stay there for the rest of my life
marciamellows (Dec 24, 2008 8:54:22 PM)
I may or may not have shared this with you already, but my granddaughter who just turned 3 sees Grandma upset quite frequently. She finally asked me, "Grandma, how long will Papa have to stay in Heaven". She thought that it was only temporary and that Jeff would come back and that I would feel better. She is so special.
shelly (Dec 24, 2008 8:54:33 PM)
the IV hurts the most
marciamellows (Dec 24, 2008 8:54:59 PM)
shelly, why do you have stitches in your eye?
bette (Dec 24, 2008 8:55:08 PM)
Why will your stitches stay forever. My melted away.
bette (Dec 24, 2008 8:55:38 PM)
Tha't mine, not my
shelly (Dec 24, 2008 8:55:49 PM)
my doc left them them in to correct my astigmatism
bette (Dec 24, 2008 8:56:11 PM)
I learn new things every day.
marciamellows (Dec 24, 2008 8:56:11 PM)
Barry, I am going for group therapy and like it. I tried individual therapy and did not.
shelly (Dec 24, 2008 8:56:19 PM)
these stitches do not dissolve
barryc (Dec 24, 2008 8:56:23 PM)
marcia... your reasons for the delay now do not appear very critical... the operation could be a big step forward for you now.
barryc (Dec 24, 2008 8:57:06 PM)
marcia... glad you found a good therapy for you.... we all heal in our own ways. And for you, Las Vegas is part of it.
shelly (Dec 24, 2008 8:57:58 PM)
I think that it is therapy here
bette (Dec 24, 2008 8:58:14 PM)
I agree shelly.
marciamellows (Dec 24, 2008 8:58:15 PM)
I am due back at the opthamologist in February and we will see. I went six months ago and he did not feel that I was emotionally stable enough at the time.
barryc (Dec 24, 2008 8:58:31 PM)
julie needs another eye lid lift and that surgery is not a biggy... but since she is falling more and unbalanced, the surgery recovery will be more risky... one good fall, and julie will be in the hospital... at least that is my main concern now.
marciamellows (Dec 24, 2008 8:59:02 PM)
barry, was her first eye lid surgery successful? Was it on both eyes?
shelly (Dec 24, 2008 8:59:04 PM)
no one understands what this disease is like
shelly (Dec 24, 2008 8:59:21 PM)
barry-is it a levator lift
bette (Dec 24, 2008 8:59:59 PM)
Shelly, what is a levator lift?
barryc (Dec 24, 2008 9:00:18 PM)
I think it is incredible just how many aspects of our lives are impactted by MMD... social, emotional, family, organic, and multi body systems... not to mention all the life coping stategies needed... someone should write a book about the total impact of this disease.
marciamellows (Dec 24, 2008 9:00:51 PM)
Speaking of books, did Terry ever begin his second book?
shelly (Dec 24, 2008 9:01:04 PM)
something my other uncle had for his eyelids
marciamellows (Dec 24, 2008 9:01:39 PM)
Barry, do you have any trips planned?
shelly (Dec 24, 2008 9:01:48 PM)
we should all get together and make a compilation of our stories
barryc (Dec 24, 2008 9:01:50 PM)
shelly,,,, julie does not know name of the lift... it was first done by a Montreal doctor with considerable success. One of his doc students did Juiie's surgery in FL...
bette (Dec 24, 2008 9:02:12 PM)
Barry, are Julies forehead muscles still strong enough to hold up her eyelids. My eyedoctor said since I could not move my forehead the surgery she had would not work for me.
marciamellows (Dec 24, 2008 9:02:26 PM)
Barry, didn't you and your whole family recently go on a cruise? How did that work out with Julie's balance?
shelly (Dec 24, 2008 9:02:35 PM)
when is she having surgery?
marciamellows (Dec 24, 2008 9:03:09 PM)
bette, Jeff could never wrinkle his forehead even when he was first diagnosed.
barryc (Dec 24, 2008 9:03:22 PM)
Marcia... over Thanksgiving went on a cruise with Terry and Wendy's family and grandchildren.... julie fell and had to stay home... I was recovering from sciatica (now much better) .... soooooo the beat goes on. Going forward, I now have to get sitters for julie round the clock for me to make trips... that includes CA MMD gig in 2009
bette (Dec 24, 2008 9:03:40 PM)
Neither could I Marcia, that is why I look so young.
shelly (Dec 24, 2008 9:04:10 PM)
I heard that if you can furrow your brow you are a candidate
bette (Dec 24, 2008 9:04:29 PM)
That seems to be true Shelly
marciamellows (Dec 24, 2008 9:04:33 PM)
I find the fact that Julie is still able to eat very encouraging.
shelly (Dec 24, 2008 9:04:49 PM)
I think mine is wrinkled from the sun
barryc (Dec 24, 2008 9:04:57 PM)
marcia... deal for Terry losing weight is that he gets a trip for every 10 lbs weight loss. He wants to go to a dude ranch in TEXAS where he went once before and had a blast. Terry can ride horses... me... I pet them.
bette (Dec 24, 2008 9:05:35 PM)
Barry, I can see you on a horse, cowboy hat and all.
marciamellows (Dec 24, 2008 9:05:40 PM)
barry, please do not forget to get me the name of the med that Terry is on.
barryc (Dec 24, 2008 9:06:27 PM)
bette... be careful... I will kick you
bette (Dec 24, 2008 9:06:52 PM)
Them there is fight'n words.
barryc (Dec 24, 2008 9:07:09 PM)
One of these days, when we have an MMD cure... I will throw a party from FL to CA... all nighters.
barryc (Dec 24, 2008 9:07:39 PM)
ok marcia.. I promise to ask Mr. T
bette (Dec 24, 2008 9:07:44 PM)
We're in.
shelly (Dec 24, 2008 9:07:52 PM)
igtg-you all have a wonderful Christmas!
bette (Dec 24, 2008 9:08:04 PM)
Nite Shelly
shelly (Dec 24, 2008 9:08:20 PM)
holla at ya in '09!
bette (Dec 24, 2008 9:08:36 PM)
Not New Year's eve?
barryc (Dec 24, 2008 9:08:41 PM)
well... I won't invite President Bush... even if Terry and I visit Texas for next holiday... boy, am I made at his bliunders.
marciamellows (Dec 24, 2008 9:08:57 PM)
I decided to have our annual Chanukah party last Saturday. I invited 85, but only about 50 showed up. Lots and lots of kids. Thats the part I like best.
shelly (Dec 24, 2008 9:08:58 PM)
oh I fogot-ttythen
shelly (Dec 24, 2008 9:09:07 PM)
nite
shelly (Dec 24, 2008 9:09:10 PM)
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barryc (Dec 24, 2008 9:09:19 PM)
Marcia.. I am hurt ... I did not get an invite
marciamellows (Dec 24, 2008 9:09:36 PM)
It must have gotten lost in the mail.
bette (Dec 24, 2008 9:09:41 PM)
MM, I slept through your party.
marciamellows (Dec 24, 2008 9:10:30 PM)
Barry, I would love to get political, but I promised not to. But now only Bette, you and I are on so.............................
bette (Dec 24, 2008 9:10:46 PM)
Go for it Marcia
marciamellows (Dec 24, 2008 9:11:12 PM)
The problem is that I am not even sure where to begin.
barryc (Dec 24, 2008 9:11:15 PM)
I met my grandkids in Bush Gardens last week, and tomorrow will go to Wendy's home for playing with grandkids....
marciamellows (Dec 24, 2008 9:11:53 PM)
How old are your grandkids now and how far do they live from you? Is Julie able to go also?
barryc (Dec 24, 2008 9:12:39 PM)
I don't care what people think about Bush, but I am soooo angry that he passed a law that healthproviders do not have to treat patients if they have moral objections for a whole raft of interventions, including stem cell research! Unbelievable. He should have MMD and then review this law.
barryc (Dec 24, 2008 9:13:17 PM)
grnadids live in Tampa about an hour drive... Julie goes too.
bette (Dec 24, 2008 9:13:23 PM)
Can Obama undue any of the damage?
marciamellows (Dec 24, 2008 9:13:41 PM)
Bush is so stupid he probably would not even be able to spell MMD.
barryc (Dec 24, 2008 9:14:07 PM)
stupid is and stupid does
barryc (Dec 24, 2008 9:14:26 PM)
bette.. I hope so... but he has soooo much to undo
marciamellows (Dec 24, 2008 9:14:30 PM)
He is not only stupid but he is evil. Not a great combination.
bette (Dec 24, 2008 9:14:51 PM)
Very evil.
marciamellows (Dec 24, 2008 9:14:53 PM)
Obama really has his work cut out for him.
marciamellows (Dec 24, 2008 9:15:12 PM)
And then there is Sarah Palin. Another idiot.
bette (Dec 24, 2008 9:15:15 PM)
I really feel sorry for Obama.
barryc (Dec 24, 2008 9:15:36 PM)
if Obama can change our image in the world, and if the ecomomy turns... well then MMD is ready for a cure for sure.
bette (Dec 24, 2008 9:15:47 PM)
I think Sarah Palin was great for the demo's.
barryc (Dec 24, 2008 9:16:03 PM)
Palin is best kept in Alaska, freezing.
marciamellows (Dec 24, 2008 9:16:04 PM)
The whole worlds reaction to Obamas election was absolutely incredible.
bette (Dec 24, 2008 9:16:47 PM)
Yes it was mm. I'd like to see work on the economy first.
barryc (Dec 24, 2008 9:17:25 PM)
WELL... I knew CA and FL people think alike... progressive and forward thinking.... but I can name states that are somewhere between prehistoric and turn of the last century.
marciamellows (Dec 24, 2008 9:17:25 PM)
I agree. It is really scarey.
marciamellows (Dec 24, 2008 9:17:49 PM)
But many of those states turned a round and supported Obama.
barryc (Dec 24, 2008 9:18:22 PM)
You
barryc (Dec 24, 2008 9:18:23 PM)
you
barryc (Dec 24, 2008 9:18:25 PM)
you
barryc (Dec 24, 2008 9:19:30 PM)
you mean Obama turned those states... thorugh groundroots efforts and willingness to reach people who never voted before... there are a lot of angry people out there and would throw darts at Bush Admin... cheney first.
marciamellows (Dec 24, 2008 9:20:07 PM)
Absolutely and for good reason.
bette (Dec 24, 2008 9:20:23 PM)
If they would stop telling everyone how awful everything is we would probably be less afraid fearful. Do you realize that a 10% unemployment figure means that 90% are employeed?
barryc (Dec 24, 2008 9:20:49 PM)
marcia for president... but get your eye fixed first.
barryc (Dec 24, 2008 9:21:47 PM)
bette... well put... media is dragging down the economy further... and they are NOT selling papers either... so even they are reaching for worse and worse news. It is insidious.
bette (Dec 24, 2008 9:21:51 PM)
Not counting those who don't get counted because they are not applying or have received all the unemployment they can get.
bette (Dec 24, 2008 9:22:42 PM)
Fear begets Fear and I am getting tired of it. I'm still fearful though.
marciamellows (Dec 24, 2008 9:23:13 PM)
I think that I have to go. Be well. Happy Chanukah and Happy New Years.
barryc (Dec 24, 2008 9:23:28 PM)
well...we are going to be cut off any second.... sooooo my friends in CA... take care of yourselves... marcia... get vegas spirit alive... bette... watch out for bogey men (I like bogey women better)... my best...BC
bette (Dec 24, 2008 9:23:32 PM)
I'm at the point of seaying just shut-up already and let's get on with our lives.
bette (Dec 24, 2008 9:23:52 PM)
Nite all. See you next week.
bette (Dec 24, 2008 9:23:57 PM)
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marciamellows (Dec 24, 2008 9:24:03 PM)
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barryc (Dec 24, 2008 9:34:41 PM)
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