Myotonic Chat Group
Wes (Jun 17, 2009 7:44:36 PM)
Wes (Jun 17, 2009 7:44:38 PM)
(This user has entered Myotonic Chat Group)
Wes (Jun 17, 2009 7:44:38 PM)
(This user has moved to Myotonic Chat Group)
PaRay (Jun 17, 2009 7:44:41 PM)
(This user has entered Myotonic Chat Group)
Wes (Jun 17, 2009 7:44:53 PM)
Hi RAy
PaRay (Jun 17, 2009 7:44:59 PM)
Hey Wes. How goes it?
Wes (Jun 17, 2009 7:45:08 PM)
Good.
Wes (Jun 17, 2009 7:45:16 PM)
You?
PaRay (Jun 17, 2009 7:45:32 PM)
Not bad. Having a good week.
Wes (Jun 17, 2009 7:45:38 PM)
Nice
PaRay (Jun 17, 2009 7:46:06 PM)
What were you up to this week?
Wes (Jun 17, 2009 7:51:12 PM)
Not much. Mostly working on getting a job. I spent some of my time catching up on some reading. I'm also watching the 12 year old too.
PaRay (Jun 17, 2009 7:51:35 PM)
Busy Busy
Wes (Jun 17, 2009 7:51:36 PM)
In fact he is at the other computer right now.
Wes (Jun 17, 2009 7:52:16 PM)
It's better to stay busy and work than to just sit around.
PaRay (Jun 17, 2009 7:52:55 PM)
You have that right. How is the job market out there?
Wes (Jun 17, 2009 7:54:21 PM)
Really bad. I might start going to school agin this next semester.
PaRay (Jun 17, 2009 7:55:11 PM)
What were you studing in school?
Wes (Jun 17, 2009 7:55:46 PM)
Compter graphics. They are having a "digital effects for movies" class next semester.
Wes (Jun 17, 2009 7:56:03 PM)
Might be valuable for when I move to Cali.
PaRay (Jun 17, 2009 7:56:11 PM)
That sounds interesting.
PaRay (Jun 17, 2009 7:57:16 PM)
There must be quite a demand for digital movies and comeerccials.
Wes (Jun 17, 2009 7:58:50 PM)
Well it's more the spec effects from the couse description.
Wendy2 (Jun 17, 2009 7:59:46 PM)
(This user has entered Myotonic Chat Group)
PaRay (Jun 17, 2009 7:59:57 PM)
Hey Wendy
Wendy2 (Jun 17, 2009 8:00:23 PM)
Made it today
PaRay (Jun 17, 2009 8:00:31 PM)
Good
Wes (Jun 17, 2009 8:00:42 PM)
Hi Wendy
PaRay (Jun 17, 2009 8:00:43 PM)
How are you doing?
Wendy2 (Jun 17, 2009 8:01:43 PM)
Alright a bit tired. went shopping today
PaRay (Jun 17, 2009 8:02:02 PM)
You like to shop?
Wendy2 (Jun 17, 2009 8:02:09 PM)
Hi Wes and ray. How are both of you doing?
PaRay (Jun 17, 2009 8:02:28 PM)
Doing fine here.
Wes (Jun 17, 2009 8:02:47 PM)
Doing good. MIght go back to school next semester.
Wendy2 (Jun 17, 2009 8:03:24 PM)
I needed to get my sunglasses adjusted. Glasses place at the mall.
PaRay (Jun 17, 2009 8:04:08 PM)
Do you have prescription sun glasses?
Wendy2 (Jun 17, 2009 8:04:24 PM)
Cool Wes i will check with family on that
Wendy2 (Jun 17, 2009 8:05:11 PM)
Yes Ray i do. Lenes are fine. Frame was ou tof whack
Wes (Jun 17, 2009 8:06:03 PM)
(This user has left DigiChat)
Wendy2 (Jun 17, 2009 8:06:34 PM)
Ray My sister and I go ttravel scooters
Wendy2 (Jun 17, 2009 8:06:53 PM)
Mine is gold hers is blue
PaRay (Jun 17, 2009 8:07:12 PM)
They will help you to be more mobil.
Wendy2 (Jun 17, 2009 8:07:30 PM)
Rode it for the first time today. They ride really well
PaRay (Jun 17, 2009 8:07:50 PM)
You will have to have races.
Wendy2 (Jun 17, 2009 8:09:32 PM)
HAve you heard from anybody abou the conference besides the dates/
Wendy2 (Jun 17, 2009 8:09:43 PM)
?
PaRay (Jun 17, 2009 8:10:13 PM)
Dr Thornton will be the keynote speeker.
PaRay (Jun 17, 2009 8:10:42 PM)
He is from the Univ of Rochester NY
Wendy2 (Jun 17, 2009 8:11:35 PM)
Haven't we had him before?
Wes (Jun 17, 2009 8:11:50 PM)
(This user has entered Myotonic Chat Group)
PaRay (Jun 17, 2009 8:11:57 PM)
I really don't know.
Wes (Jun 17, 2009 8:12:06 PM)
Sorry about that.
PaRay (Jun 17, 2009 8:12:10 PM)
Wes is back.
Wes (Jun 17, 2009 8:12:26 PM)
Computer said, "no chat for you!"
Wendy2 (Jun 17, 2009 8:12:29 PM)
Got knocked off?
Wes (Jun 17, 2009 8:14:05 PM)
Yeah.
Brenda (Jun 17, 2009 8:14:32 PM)
(This user has entered Myotonic Chat Group)
Wendy2 (Jun 17, 2009 8:14:37 PM)
I had the problem a couple of weeks ago
PaRay (Jun 17, 2009 8:14:50 PM)
Hi Brenda
Wes (Jun 17, 2009 8:14:56 PM)
Hi Brenda
iris1 (Jun 17, 2009 8:15:04 PM)
(This user has entered Myotonic Chat Group)
Brenda (Jun 17, 2009 8:15:07 PM)
HI
Wes (Jun 17, 2009 8:15:09 PM)
Hi Iris
Wendy2 (Jun 17, 2009 8:15:09 PM)
Hi Brenda are you new to this chat room?
Brenda (Jun 17, 2009 8:15:18 PM)
YA
Wendy2 (Jun 17, 2009 8:15:22 PM)
HI iris
Wendy2 (Jun 17, 2009 8:15:47 PM)
Tell us about yourself Brenda?
PaRay (Jun 17, 2009 8:15:49 PM)
Hi Iris. I was thinking about you today. Haven't heard from you for a while.
Brenda (Jun 17, 2009 8:15:52 PM)
still figureing everything out
Wendy2 (Jun 17, 2009 8:16:14 PM)
Are you affected or are you acaregiver?
iris1 (Jun 17, 2009 8:16:34 PM)
Good Evening, It has been a very long time since I have been on the chat. For the one's who do not know me. I am the caregiver for my husband who has MMD. PaRay, it is nice to know that someone was thinking about me.
Brenda (Jun 17, 2009 8:16:36 PM)
well im diagnosed but they are still honeing in on the exact kind
Brenda (Jun 17, 2009 8:17:35 PM)
hi to all of u
Wendy2 (Jun 17, 2009 8:17:49 PM)
when were you Diagnosed?
Wes (Jun 17, 2009 8:17:58 PM)
Nice to meet you Brenda.
PaRay (Jun 17, 2009 8:17:58 PM)
Good to have you Brenda.
iris1 (Jun 17, 2009 8:18:00 PM)
PaRay, Do we still have the "Reaching Out" newsletters coming out? I have not gotten one in a long time. Thanks for info.
Brenda (Jun 17, 2009 8:18:01 PM)
It will be nice to talk to u guys
Wendy2 (Jun 17, 2009 8:18:13 PM)
We are all very friendly here!
Wes (Jun 17, 2009 8:18:22 PM)
Do they suspect a specific kind of md?
PaRay (Jun 17, 2009 8:18:28 PM)
Reaching Out has been on a long delay.
Brenda (Jun 17, 2009 8:18:39 PM)
ya i have md, but they are still trying to figure out exactly what kind
iris1 (Jun 17, 2009 8:19:33 PM)
Are we still going to have "Reaching Out" even after a long delay. Brenda, where do you live?
Wendy2 (Jun 17, 2009 8:19:54 PM)
How did you hear about of our Chat. Just curious
Brenda (Jun 17, 2009 8:20:15 PM)
ya the nero thought it was congital, but he was not sure
Brenda (Jun 17, 2009 8:20:22 PM)
fl
Brenda (Jun 17, 2009 8:20:32 PM)
mda site
PaRay (Jun 17, 2009 8:20:44 PM)
Iris I am not sure what the outcome will be.
Wes (Jun 17, 2009 8:21:05 PM)
(This user has left DigiChat)
iris1 (Jun 17, 2009 8:21:10 PM)
Brenda, do you have children and if you do not mine, how old are you?
Wendy2 (Jun 17, 2009 8:21:10 PM)
PaRay I woder if she could into touch with Barry
Brenda (Jun 17, 2009 8:21:12 PM)
im going to mayo clinic through md now
Wendy2 (Jun 17, 2009 8:21:25 PM)
wonder
PaRay (Jun 17, 2009 8:21:57 PM)
Maybe Barry will come on tonight. He is in Clearwater Brenda.
iris1 (Jun 17, 2009 8:21:59 PM)
Also Brenda could get in touch with Shelly.
Wendy2 (Jun 17, 2009 8:22:00 PM)
I think he got knocked off again
Brenda (Jun 17, 2009 8:22:01 PM)
im 44 yes a daughter 22 that is one of the main reasons i hope to get to the bottom of all this
Wendy2 (Jun 17, 2009 8:22:23 PM)
I'm 34 from OR
Wendy2 (Jun 17, 2009 8:23:23 PM)
brb
Brenda (Jun 17, 2009 8:23:28 PM)
i have a lrge lump on my thyroid which im supposed to go see an endrocon through my reg doc
PaRay (Jun 17, 2009 8:24:13 PM)
Have to be careful with the lumps.
Wendy2 (Jun 17, 2009 8:24:43 PM)
My you have thyroid disease. I yale a pill evryday for my thyroid
Wendy2 (Jun 17, 2009 8:25:05 PM)
take a pill
Brenda (Jun 17, 2009 8:25:08 PM)
well I ve had it since i was a teenager, but i now have trouble swallowing
Wendy2 (Jun 17, 2009 8:25:17 PM)
Told you i was tired
Brenda (Jun 17, 2009 8:25:49 PM)
so wendy if u dont mind me asking what kind do you have
Wendy2 (Jun 17, 2009 8:26:12 PM)
Dinner is ready so i'd better go if Wes or Barry get back on yell them i said "Hi"
PaRay (Jun 17, 2009 8:26:22 PM)
Iris How is Bernie?
Wendy2 (Jun 17, 2009 8:26:25 PM)
Throid?
barryc (Jun 17, 2009 8:27:13 PM)
(This user has entered Myotonic Chat Group)
Brenda (Jun 17, 2009 8:27:13 PM)
i mean what type of md or do u have md
barryc (Jun 17, 2009 8:27:35 PM)
hi dudes
snaped (Jun 17, 2009 8:27:37 PM)
(This user has entered Myotonic Chat Group)
PaRay (Jun 17, 2009 8:27:41 PM)
Barry ... Brenda is new and from FL
Wendy2 (Jun 17, 2009 8:27:45 PM)
I take Sinthroid for my Thyroid. I have Myotonic muscular dystrophy.
Brenda (Jun 17, 2009 8:27:48 PM)
all i know is im confused by it all
Brenda (Jun 17, 2009 8:27:53 PM)
hi
barryc (Jun 17, 2009 8:27:53 PM)
well, then I like her
PaRay (Jun 17, 2009 8:28:24 PM)
Brenda he likes everyone!!!!!!~
Brenda (Jun 17, 2009 8:28:36 PM)
lol
iris1 (Jun 17, 2009 8:28:48 PM)
PaRay, he is weaker and weaker. He has a new Permobile 300 power chair, so now he can enjoy getting outside and going to our pond and garden.
Wendy2 (Jun 17, 2009 8:28:59 PM)
Hi barry Steph says "Hi" too
Brenda (Jun 17, 2009 8:29:18 PM)
wendy do you know if that a very commen thing with myotonic
snaped (Jun 17, 2009 8:29:20 PM)
hi everyone this is fluffy I forgot my password
barryc (Jun 17, 2009 8:29:24 PM)
the Perm seems like it does the trick
barryc (Jun 17, 2009 8:30:12 PM)
hi wendy and steph... today is my anniversary... julie and I are watching the Rays play Denver
iris1 (Jun 17, 2009 8:30:18 PM)
Thank goodness for Medicare to pay for the powerchair.
Brenda (Jun 17, 2009 8:30:24 PM)
they were checking on myastinia gravis and now myotonic
elliebedelia (Jun 17, 2009 8:30:26 PM)
(This user has entered Myotonic Chat Group)
Wendy2 (Jun 17, 2009 8:30:30 PM)
Thyroid is from my Mom whose does not have MMD, I think it could be
barryc (Jun 17, 2009 8:30:39 PM)
iris... mda will also pay for powerchair
barryc (Jun 17, 2009 8:30:57 PM)
hi ellie
PaRay (Jun 17, 2009 8:31:07 PM)
Hey Ellie
Brenda (Jun 17, 2009 8:31:07 PM)
my mom has hasamotos
Wendy2 (Jun 17, 2009 8:31:08 PM)
Hi ellie
snaped (Jun 17, 2009 8:31:10 PM)
hi eliie
elliebedelia (Jun 17, 2009 8:31:15 PM)
Hello and Good Evening Everyone
Brenda (Jun 17, 2009 8:31:20 PM)
thyroid problem
Brenda (Jun 17, 2009 8:31:25 PM)
hi ellie
barryc (Jun 17, 2009 8:31:26 PM)
Brenda, where are you from in our glorious state, FLoriduh,,,, chad capitol of the world
Brenda (Jun 17, 2009 8:31:34 PM)
jax
Brenda (Jun 17, 2009 8:31:50 PM)
go jags
Brenda (Jun 17, 2009 8:32:34 PM)
my father had a goiter removed in his teens
barryc (Jun 17, 2009 8:33:04 PM)
jax is where I have some collegues who do my psychological testing... ocassionally I go there (but not in the winter!)...
snaped (Jun 17, 2009 8:33:10 PM)
I'm workimg at VBS at church we have only had 25kids our normal is about 55
iris1 (Jun 17, 2009 8:33:12 PM)
Barry how is Julie doing?
bette (Jun 17, 2009 8:33:14 PM)
(This user has entered Myotonic Chat Group)
elliebedelia (Jun 17, 2009 8:33:14 PM)
Brenda my mom had her goiter out also in her early yrs Has to take thyroid replacement med all her life
barryc (Jun 17, 2009 8:33:30 PM)
hi ms. CA
snaped (Jun 17, 2009 8:33:59 PM)
hi bette
barryc (Jun 17, 2009 8:34:11 PM)
iris... julie is weak, but I watch her like a hawk and walk her around the condo... she is happiest when the grandkids are visiting...
Wendy2 (Jun 17, 2009 8:34:20 PM)
hi Bette Brenda is new to our Chat tonight
bette (Jun 17, 2009 8:34:20 PM)
Hi all, sorry I'm late. I also have to leave early but I wanted to check in.
barryc (Jun 17, 2009 8:34:35 PM)
Brenda is ms. Jax
elliebedelia (Jun 17, 2009 8:34:52 PM)
snaped we I guess didn`t have VBS this summer or not yet We don`t have enough people to do it Most everyone works
barryc (Jun 17, 2009 8:34:57 PM)
so you don't like any more, Bette?
bette (Jun 17, 2009 8:35:12 PM)
Brenda, welcome to the group.
Wendy2 (Jun 17, 2009 8:35:27 PM)
Dinner is really ready now bye all
bette (Jun 17, 2009 8:35:32 PM)
Where did you get that idea Barry? I still love you.
elliebedelia (Jun 17, 2009 8:35:33 PM)
It is so nice to have newcommers with us
bette (Jun 17, 2009 8:35:41 PM)
amen Ellie
Wendy2 (Jun 17, 2009 8:35:52 PM)
(This user has left DigiChat)
barryc (Jun 17, 2009 8:35:54 PM)
enjoy dinner wendy... is steph leaving too?
elliebedelia (Jun 17, 2009 8:36:01 PM)
Brenda I have relatives in Jax also they used to have a beef farm
snaped (Jun 17, 2009 8:36:02 PM)
we havet from 5:45 till 8:30 do people who work can do it
barryc (Jun 17, 2009 8:36:43 PM)
hope the catttle in Jax were outside the city! city limits are really big, big up there...
iris1 (Jun 17, 2009 8:36:50 PM)
Barry, I am in the same boat as you with the very weak spouse. I have to hold on to the back of Bernie's pants and belt when he does walk. He uses the walker at all times. Cannot walk by himself.
bette (Jun 17, 2009 8:37:02 PM)
We got home from Solana Beach with about $1500,00 worth of cash and auction items for our fundraiser.
barryc (Jun 17, 2009 8:37:27 PM)
Bette... and we love you too!
bette (Jun 17, 2009 8:37:29 PM)
Is Jax short for Jacksonville?
elliebedelia (Jun 17, 2009 8:37:32 PM)
great job bette
Brenda (Jun 17, 2009 8:37:40 PM)
ya
barryc (Jun 17, 2009 8:37:52 PM)
terrific bette! for the cause
elliebedelia (Jun 17, 2009 8:38:02 PM)
I have cousins in Winter Haven and they have a horse farm
bette (Jun 17, 2009 8:38:10 PM)
It takes half of our vacation but it's worth it.
barryc (Jun 17, 2009 8:38:17 PM)
of course, jax, is home of a great football team
barryc (Jun 17, 2009 8:38:50 PM)
ellie.. you know people all over the place.... add Clearwater to your friends (smile)
elliebedelia (Jun 17, 2009 8:39:30 PM)
oh yes indeed I really don`t know these people I just know they exist
bette (Jun 17, 2009 8:39:41 PM)
We had trouble getting it all back to L.A. Our usual pick-up person is getting weaker and couldn't drive down this year and I'm not sure what we will do next year but that is 11 months from now and I'm not going to worry about it yet.
barryc (Jun 17, 2009 8:40:03 PM)
iris... yeh, I know what you are dealing with... julie cannot use a walker... I have to help her walk everywhere... she uses her scooter outside the condo, but it is tiring.
barryc (Jun 17, 2009 8:40:51 PM)
maybe corey can help next year, Bette... now that he is a LA dude?
barryc (Jun 17, 2009 8:41:19 PM)
Brenda.... do you have MMD?
bette (Jun 17, 2009 8:41:31 PM)
I'm hoping. All he has to do is get time off on a week day.
elliebedelia (Jun 17, 2009 8:41:42 PM)
I may be comming to Florida nest Jan for a couple months My friend has a doublewide in a park and has invited me. I don`t know how ro spell it Hasoosa or something It is on the gulf side
bette (Jun 17, 2009 8:42:05 PM)
We offer free room for up to four days for two people.
bette (Jun 17, 2009 8:42:43 PM)
Are you still planning on coming out here Ellie?
Brenda (Jun 17, 2009 8:42:46 PM)
dont know what kind yet
elliebedelia (Jun 17, 2009 8:43:06 PM)
are you doing testing Brenda?
barryc (Jun 17, 2009 8:43:10 PM)
Homosassa... lovely little town... will have to visit with you, Ellie... go to FL! a lot warmer, too.
Brenda (Jun 17, 2009 8:43:29 PM)
going to mayo throuth mda
Brenda (Jun 17, 2009 8:43:41 PM)
i heart fl
bette (Jun 17, 2009 8:43:57 PM)
Is there a Mayo in Florida?
elliebedelia (Jun 17, 2009 8:44:01 PM)
oh thankyou barry that will be wonderful She is from NH also and goes fron Jan to May and says I can use it anytime
Brenda (Jun 17, 2009 8:44:08 PM)
right in jax
bette (Jun 17, 2009 8:44:17 PM)
Oh, how nice.
Brenda (Jun 17, 2009 8:45:08 PM)
yeah when they said they were sending me i was supprised to find it was so close
elliebedelia (Jun 17, 2009 8:45:17 PM)
does either parent have mmd Brenda? It has to be inherited
barryc (Jun 17, 2009 8:45:24 PM)
Well, ellie, we have a guest room for you at our beachfront condo... so come on down, as they say...
Brenda (Jun 17, 2009 8:45:36 PM)
no
elliebedelia (Jun 17, 2009 8:46:04 PM)
well I don`t think it would be mmd Brenda then
Brenda (Jun 17, 2009 8:46:13 PM)
both have had thyroid problems
Brenda (Jun 17, 2009 8:46:36 PM)
no I really dont think mmd
elliebedelia (Jun 17, 2009 8:46:53 PM)
oh I will be able to travel I have a toyota corolla and my GPS so I am set to go
bette (Jun 17, 2009 8:47:02 PM)
Ellie, I'm not sure it has to be inherited. There are some genetic diseases that just crop us. They all had to start somewhere.
barryc (Jun 17, 2009 8:47:10 PM)
bette... Mayo? I don't think so... reminds me of Mayonaise from movie about navy jet jocks.
Brenda (Jun 17, 2009 8:47:13 PM)
they were looking at myastinia gravis and others
barryc (Jun 17, 2009 8:47:54 PM)
ellie, you cannot miss us, if you head to gulf of mexico and drive south from homosassa.
bette (Jun 17, 2009 8:48:25 PM)
I missed that Movie.
elliebedelia (Jun 17, 2009 8:48:29 PM)
bette I was told bu my neuro that one parent has to have it then the children have 50% chance to inherite it But I an be wrong
barryc (Jun 17, 2009 8:48:49 PM)
earth to Ray... do you know how Ed is doing? I know he is having exploratory surgery...
snaped (Jun 17, 2009 8:48:50 PM)
me too
bette (Jun 17, 2009 8:49:05 PM)
I was told the same thing but itt had to start somewhere.
elliebedelia (Jun 17, 2009 8:49:09 PM)
i will sure keep you informed barry In Oct I am going to Martha`s vineyard
PaRay (Jun 17, 2009 8:49:22 PM)
Haven't heard for a couple of days.
barryc (Jun 17, 2009 8:49:44 PM)
ellie.. that is true, as long as only one parent has MMD
PaRay (Jun 17, 2009 8:49:57 PM)
Don't drive off the bridge.
elliebedelia (Jun 17, 2009 8:49:58 PM)
yes bette I can understand that Guess it would be interesting to know how far it goes back to generations
bette (Jun 17, 2009 8:50:00 PM)
When I spoke to Marcia on Monday Ed was out of ICU and in a regular room. She had not said anything about surgery.
barryc (Jun 17, 2009 8:50:14 PM)
julie has MMD and I do not... one of our kids inherited it and one did not
PaRay (Jun 17, 2009 8:51:00 PM)
Hey that's 50 / 50
elliebedelia (Jun 17, 2009 8:51:03 PM)
my oldest son now is waiting to be testing He is 37 and having symptoms
bette (Jun 17, 2009 8:51:04 PM)
My mom had MMD but none of her sisters or brothers had it.
bette (Jun 17, 2009 8:51:58 PM)
Snapped, how is Fluffy doing?
elliebedelia (Jun 17, 2009 8:52:00 PM)
my dad and brother and sister has it and uncles and cousins We have it all over our family
barryc (Jun 17, 2009 8:52:01 PM)
Rockies are beating Rays tonight... yesterday Rays beat up on Rockies.
snaped (Jun 17, 2009 8:52:12 PM)
My mom had MMD her younger brother abn his daughter
PaRay (Jun 17, 2009 8:52:37 PM)
Barry That's 50 / 50 too. LOL
barryc (Jun 17, 2009 8:52:39 PM)
good thinking Ray.. .i knew you would get the numbers right...
bette (Jun 17, 2009 8:52:45 PM)
Yes, but we did win the NBA championship.
iris1 (Jun 17, 2009 8:52:53 PM)
Barry, since you know I am going through. My Dad is in a Nursing home and I have told Bernie that my Dad has at least 10 different people helping with him over a 24 hours period. I am the only helper for Bernie and at times it really gets to me. I guess I have Caregiver Burnout. Is there really a condition like Burnout?
snaped (Jun 17, 2009 8:52:59 PM)
this is fluffy I forgot my password I'm doing fine
barryc (Jun 17, 2009 8:53:19 PM)
Ray, I saw your pretty photo on Facebook (do I have that right?)...
PaRay (Jun 17, 2009 8:53:42 PM)
That's the best I can do.
bette (Jun 17, 2009 8:53:53 PM)
Oh fluffy, I began to wonder when you mentioned your mom.
elliebedelia (Jun 17, 2009 8:54:37 PM)
I have a little tortie kitten and she is so much trouble If I had only known about torties I don`t think I would have taken her in !!
bette (Jun 17, 2009 8:54:44 PM)
I finally gave up and signed up on Face Book but I can't figure out how to use it.
bette (Jun 17, 2009 8:55:07 PM)
What kind of kitten is a tortie?
elliebedelia (Jun 17, 2009 8:55:14 PM)
I am on facebook too but don`t go there much
PaRay (Jun 17, 2009 8:55:30 PM)
Myotonic Dystrophy Type I/II as well as FSHD are autosomal dominant genetic disorders. If one parent has the affected gene, each child has 50% chance of inheriting the disorder. The gender of the child does not change the likelihood of inheriting the condition. If a child does not receive the abnormal gene, they will not develop or pass on the disease.
iris1 (Jun 17, 2009 8:55:33 PM)
Barry and PaRay, the Apathy and No thanks from him I think is what really gets to me. Am I wrong for feeling this way?
bette (Jun 17, 2009 8:55:39 PM)
I don't think I will be going to it at all.
elliebedelia (Jun 17, 2009 8:56:13 PM)
Her coat is tortous shell color and they are known to be dingbats phyco in trouble andway to mischivous and never grow out of it
PaRay (Jun 17, 2009 8:56:29 PM)
Iris. Some days are very difficult.
barryc (Jun 17, 2009 8:56:38 PM)
iris.. yes, burnout can happen for any heavy emotional endeavor having a beginning and no end in sight... iris, I know what you are feeling... I have caregivers to help me get some free time... but it is very hard... I am on 20 hrs a day four days a week and 24 hrs three days a week.... and I have to also help my son who has MMD and my mom who has dementia and a terminal blood condition... I have caregiver for my son and round the clock caregivers for my mom.... soooooo I am surrounded with caregiving, including my own!
bette (Jun 17, 2009 8:56:48 PM)
Oh Ellie, that does sound like a handful.
elliebedelia (Jun 17, 2009 8:57:29 PM)
100% Ray ! What would we do without your abundance of knowledge
PaRay (Jun 17, 2009 8:57:57 PM)
Me and Mr. Google.
barryc (Jun 17, 2009 8:58:13 PM)
iris,,, today is my 42 anniversary and when I asked Julie about going out to dinner, she said she would prefer to stay home... apathy is just part of the disease... and it robs me of happiness.
bette (Jun 17, 2009 8:58:24 PM)
I thought Julie had 24 hr. caregivers besides you Barry.
barryc (Jun 17, 2009 8:59:09 PM)
no bette... 4 hr caregivers on four afternoons.
bette (Jun 17, 2009 8:59:30 PM)
I think I am robbing Mark of a good life but he says no. We have had a platonic relationship for years and I think it bothers me more than him.
elliebedelia (Jun 17, 2009 8:59:33 PM)
Well Happy Anniversary to you and Julie and Congrats to you both. You are a grand example of devotion to each other
snaped (Jun 17, 2009 8:59:56 PM)
Well I'm getting tired have to fast at 10:00 so I can my blood drawn tomorrow. Talk to you all later
bette (Jun 17, 2009 9:00:14 PM)
By fluff
elliebedelia (Jun 17, 2009 9:00:25 PM)
I would love to find a man willing to have a platonic relationship
barryc (Jun 17, 2009 9:00:33 PM)
bette.. the disease is what robs us of relationships.. please don't blame yourself...
snaped (Jun 17, 2009 9:00:43 PM)
(This user has left DigiChat)
barryc (Jun 17, 2009 9:00:56 PM)
thanx ellie
bette (Jun 17, 2009 9:01:01 PM)
(This user has left DigiChat)
Brenda (Jun 17, 2009 9:01:35 PM)
paray
elliebedelia (Jun 17, 2009 9:01:38 PM)
my mom and I took care of me dad for 10 yrs Totle care and very hard work He was a large man He called us his=angels
iris1 (Jun 17, 2009 9:01:38 PM)
Barry, I know what you mean about going out. Bernie would rather just have us pick up something to eat instead of going out. Thank goodness we have friends that help if we go out. My parents are both getting older and live in Georgia and I am here in Louisiana and cannot see them. Finding 24 hours care for Bernie is very hard and at times I resent all of this. I do have help 5 hours a day twice a month, but that is not enough. I am soryy for going on and on about this. But this is what our Chat friends are for. I have not bee on in a long time.
Brenda (Jun 17, 2009 9:01:49 PM)
u still here
PaRay (Jun 17, 2009 9:01:53 PM)
Brenda ... You taking this all in? LOL
Brenda (Jun 17, 2009 9:01:59 PM)
lol
PaRay (Jun 17, 2009 9:02:22 PM)
They call me the watcher.
Brenda (Jun 17, 2009 9:02:25 PM)
i keep rereading what ya wrote , not sure i gettin it
beckdildal (Jun 17, 2009 9:02:41 PM)
(This user has entered Myotonic Chat Group)
barryc (Jun 17, 2009 9:02:47 PM)
bette... I am thinking of getting a live in caregiver... but that means having somone live in our condo, and that just is hard for me to accept....it would give me a lot more freedom and I would love to travel more.
beckdildal (Jun 17, 2009 9:02:56 PM)
hello
Brenda (Jun 17, 2009 9:03:07 PM)
hi
PaRay (Jun 17, 2009 9:03:31 PM)
Basically with MMD one of the parents has to be affected.
PaRay (Jun 17, 2009 9:04:26 PM)
However the parent could not have many symptoms.
elliebedelia (Jun 17, 2009 9:04:28 PM)
Hey barry I am available and have worked in geriatrics all my life and I am still quite strong
elliebedelia (Jun 17, 2009 9:04:45 PM)
Hi beck so good to see you here with us
Brenda (Jun 17, 2009 9:04:53 PM)
ray i asked nuero how i could have anything like this ...he was saying something about my parents haveing domant genes
barryc (Jun 17, 2009 9:04:53 PM)
iris.. what you are feeling, I am feeling too... it never ends... it always means doing more than you want to do at times... and you are on whether you want to be on or not... all I can say is that I know Julie would do the same for me if I had MMD... she is a true partner and
beckdildal (Jun 17, 2009 9:04:57 PM)
thanks ellie
beckdildal (Jun 17, 2009 9:05:58 PM)
barry is Juile you sole caregiver right now?
barryc (Jun 17, 2009 9:07:19 PM)
beck... I am julie's carevgiver... and I also do caregiving for my son who has MMD and lives about 20 minutes from me.
beckdildal (Jun 17, 2009 9:08:13 PM)
oic, ok that makes sense.
barryc (Jun 17, 2009 9:08:34 PM)
ellie... come on down!
beckdildal (Jun 17, 2009 9:08:43 PM)
my mom's caregiver's hours just got cut, by the state.
elliebedelia (Jun 17, 2009 9:08:43 PM)
Homas
Brenda (Jun 17, 2009 9:09:21 PM)
I think you guys are all strong amazing people
barryc (Jun 17, 2009 9:10:05 PM)
thanx Brenda... now we include you, too!
elliebedelia (Jun 17, 2009 9:10:14 PM)
Well we can find strength in each other What are you haveing for symptems Brenda?
Brenda (Jun 17, 2009 9:10:44 PM)
ty
iris1 (Jun 17, 2009 9:11:13 PM)
My husband has 3 son's and they do not help at all. 1 son has MMD and of course cannot help and that is hard to take that the other 2 will not help their Father.
barryc (Jun 17, 2009 9:11:15 PM)
I hate.. I mean really hate... all the government so called programs for people with disabilities.. dealing with benefits, social security idiots, and so called caregivers who are just custodial helpers...
elliebedelia (Jun 17, 2009 9:11:17 PM)
Brenda there is also a support group on Sunday eve
Brenda (Jun 17, 2009 9:11:30 PM)
i have have lung weakness heart rythem probs of coarse savere weakness
beckdildal (Jun 17, 2009 9:12:20 PM)
have you had to deal with the govt alot barry?
Brenda (Jun 17, 2009 9:12:22 PM)
lump on thyroid swallowing probs speech probs and vision probs
elliebedelia (Jun 17, 2009 9:12:27 PM)
iris I have 3 brothers and 1 sister and I am the only one who cared for my dad and now I have my mom fortunately she is in good health at 82
barryc (Jun 17, 2009 9:12:47 PM)
iris... my wife julie has a saying about all that life has brought her... it is what it is... you don't control the deck you are dealt, only the way your play your cards...
elliebedelia (Jun 17, 2009 9:13:07 PM)
sounds like some form of md Keep us posted Brenda
PaRay (Jun 17, 2009 9:13:23 PM)
I am looking for a wild card or two.
Brenda (Jun 17, 2009 9:13:29 PM)
i have atrophy and strenght goes from full to 0 in five mins
elliebedelia (Jun 17, 2009 9:13:50 PM)
me too Ray
beckdildal (Jun 17, 2009 9:13:58 PM)
hmm, are they looking into it Brenda?
iris1 (Jun 17, 2009 9:14:27 PM)
Barry, that is a very good saying, I will have to remember that.
elliebedelia (Jun 17, 2009 9:14:37 PM)
it does sound like mg good you are being tested
iris1 (Jun 17, 2009 9:15:14 PM)
Ellie, are you a caregiver for someone with MMD or do you have MMD?
Brenda (Jun 17, 2009 9:15:16 PM)
ya but they already did mucsle bio and ele tests, they are still tryin to figure what kind
beckdildal (Jun 17, 2009 9:15:50 PM)
"when life gives you lemons, make lemonade”
elliebedelia (Jun 17, 2009 9:15:53 PM)
my mom exhasted herself caring for my dad and we had home health nurses 7 days a week and she doesn`t regret keeping him home and neither do I
elliebedelia (Jun 17, 2009 9:16:30 PM)
I have mmd myself but still in fairly good health and I have ss dissability
barryc (Jun 17, 2009 9:16:42 PM)
beck.. not a lot because I pay privately for all our caregivers... but I still have to deal with ding bats... I am trying right now to get my son who has a disabiity benefit a much larger one for the rest of his life time... when I get social security next year, I can get his this benefit as a disabled adult son... BUT in 1976 he earned a little over $ 6000 for the year and that was too much money! Every year since, he has earned under 4 K... so now I have to get his job coach that year to fill out special forms and I have had to research all his jobs that year, even thought his major employer is not longer operating... duh, duh, duh... and our federal govt gives benefits to so many, but my son may not get my social security benefit... as if MMD is not enough!
beckdildal (Jun 17, 2009 9:18:29 PM)
wow, barry, i sure hope that it works out for him to get it.
elliebedelia (Jun 17, 2009 9:19:26 PM)
beck barry`s son is an author of a wonder book on living with mmd
elliebedelia (Jun 17, 2009 9:20:03 PM)
is he wriitting another book now barry?
beckdildal (Jun 17, 2009 9:20:13 PM)
have you read his book ellie?
barryc (Jun 17, 2009 9:20:20 PM)
thanx beck for listening... I am the kind of person who does not give up... if there is a will, there is a way... and I am working on it...
elliebedelia (Jun 17, 2009 9:21:01 PM)
no but I have it I ordered it and it is in Vt till I get back in Aug
barryc (Jun 17, 2009 9:21:25 PM)
ellie... we started the second book and wrote a few chapters, but neither one of us really was excited about the content... soooo we just sat down and wrote another book outline... we will be starting to write again any time now...thanx for asking.
barryc (Jun 17, 2009 9:21:47 PM)
terry
elliebedelia (Jun 17, 2009 9:21:56 PM)
oh good that is encouraging
barryc (Jun 17, 2009 9:22:21 PM)
terry's book is doing well.. .just sold a couple more copies on Amazon last week... people from all over the country have ordered it... and that is so cool
beckdildal (Jun 17, 2009 9:23:08 PM)
are you on myMDA barry?
iris1 (Jun 17, 2009 9:23:35 PM)
Barry, my husband's middle son has MMD and he gets SSI and is 43 years old. My husband is on SS how do you find out about the adult son getting SS benifits off my husband? Did not know that could happen, does it affect me getting my husband's SS benifts?
barryc (Jun 17, 2009 9:24:16 PM)
what is myMDA?
beckdildal (Jun 17, 2009 9:24:45 PM)
it is the group that MDA has satrted online
elliebedelia (Jun 17, 2009 9:24:49 PM)
it is a fairly new website barry It is a good site
beckdildal (Jun 17, 2009 9:24:59 PM)
kind of like facebook
PaRay (Jun 17, 2009 9:24:59 PM)
MDA's version of Facebook
elliebedelia (Jun 17, 2009 9:25:16 PM)
yes ray did you join it?
PaRay (Jun 17, 2009 9:25:38 PM)
Yes I am in there somewhere.
beckdildal (Jun 17, 2009 9:25:38 PM)
i was thinking that you could do a blog there about your son's book
barryc (Jun 17, 2009 9:25:57 PM)
iris... I did not know this... my son gets a small disability benefit, but when I get social security next year, I will get a large amt (worked all my life), and Terry can be reclassified as a disabled adult son and get much more money! And julie, who also has a small disabiity benefit, will also get a larger amt under my benefits.
elliebedelia (Jun 17, 2009 9:26:03 PM)
I will look for you ray