FSHD Chat

froglady (Oct 6, 2008 8:45:28 PM)
Welcome to the FSHD Chat

blue_sky (Oct 6, 2008 8:52:13 PM)
(This user has entered FSHD Chat)

froglady (Oct 6, 2008 8:52:35 PM)
Hello Blue_sky: Welcome to the FSHD Chat

froglady (Oct 6, 2008 8:52:54 PM)
I think this is your first visit, correct?

blue_sky (Oct 6, 2008 8:53:01 PM)
Yes

froglady (Oct 6, 2008 8:53:12 PM)
Do you or someone you know have FSH?

blue_sky (Oct 6, 2008 8:53:36 PM)
I do. I am 33 and was diagnosed 3 1/2 years ago.

froglady (Oct 6, 2008 8:54:13 PM)
Ic. What part of the country are you from. I am from Southern AZ

blue_sky (Oct 6, 2008 8:54:21 PM)
Lancaster, PA

froglady (Oct 6, 2008 8:54:52 PM)
How are you doing physically?

blue_sky (Oct 6, 2008 8:55:58 PM)
Well pretty good, I guess. I have had the most rapid decline over the past two years. I cannot run or jump. Waking up stairs is getting terribly difficult. But I can still walk, so I am thankful for that.

froglady (Oct 6, 2008 8:56:24 PM)
Ic. So you don't use any assists yet?

blue_sky (Oct 6, 2008 8:57:04 PM)
not yet, but getting up off the ground if I fall is impossible unless I have something/ people to help

froglady (Oct 6, 2008 8:57:05 PM)
I am 74 years old, am in a wheel chair most of the time, but I can still stand if I hold on to something. I wear AFO's on both legs

blue_sky (Oct 6, 2008 8:57:19 PM)
When were you diagnosed?

froglady (Oct 6, 2008 8:57:49 PM)
I was dx when I was about 36, so I have lived a long time with this disease and gone through all the phases of progression

froglady (Oct 6, 2008 8:57:53 PM)
Do you work?

blue_sky (Oct 6, 2008 8:58:07 PM)
Yes, full time and I ahve a 7 year old son

wolflady (Oct 6, 2008 8:58:09 PM)
(This user has entered FSHD Chat)

blue_sky (Oct 6, 2008 8:58:19 PM)
Hello!

froglady (Oct 6, 2008 8:58:21 PM)
Hello there Wolflady. We have a new chatter tonight

froglady (Oct 6, 2008 8:58:43 PM)
Blue_sky have you ever read any of the transcripts of this chat?

blue_sky (Oct 6, 2008 8:58:52 PM)
only last weeks

froglady (Oct 6, 2008 8:59:12 PM)
We are happy to have you on board

blue_sky (Oct 6, 2008 8:59:22 PM)
thanks - glad to be here

wolflady (Oct 6, 2008 8:59:32 PM)
HI Froglady hi there Blue sky nice to meet you

froglady (Oct 6, 2008 8:59:32 PM)
I certainly understand the falling and not being able to get back up without help. That is very, very scary

wolflady (Oct 6, 2008 8:59:50 PM)
oh i know how that is too

froglady (Oct 6, 2008 9:00:12 PM)
Blue sky how is your Son?

blue_sky (Oct 6, 2008 9:00:14 PM)
froglady - when was your most rapid decline

blue_sky (Oct 6, 2008 9:00:37 PM)
my son is good - no one will test him until he shows signs of the disease

froglady (Oct 6, 2008 9:01:20 PM)
My most rapid decline was probably when I was 58. I had breast cancer and was down a lot, and that is never a good thing. I went from using one crutch at that time to using a walker, then part time to a scooter that year

wolflady (Oct 6, 2008 9:01:29 PM)
say, Froglady,,,,,any news on how Brit is doing?

froglady (Oct 6, 2008 9:01:41 PM)
No news this week Wolf

wolflady (Oct 6, 2008 9:01:56 PM)
won't they do a blood test, blue?

froglady (Oct 6, 2008 9:02:08 PM)
Blue Sky, the Brit Wolf mentions is a co-host and he fell and broke his arm week before last

blue_sky (Oct 6, 2008 9:02:16 PM)
I see. I took an office job just before I was diagnosed and that was a mistake since I was more sedentary

froglady (Oct 6, 2008 9:02:57 PM)
It pays one to move around as much as possible to ward of osteoporosis, of which I suffer terribly

wolflady (Oct 6, 2008 9:03:16 PM)
ummmmm you have to bear with me tonight, I'm in the middle of watching my Vikings beat the Saints

blue_sky (Oct 6, 2008 9:03:18 PM)
I understand why they would not since he gets a label for something that he does not exhibit, but there is also the flip side and the need or desire to know

beckdildal (Oct 6, 2008 9:03:30 PM)
(This user has entered FSHD Chat)

wolflady (Oct 6, 2008 9:03:35 PM)
hi beck

froglady (Oct 6, 2008 9:03:36 PM)
I understand about them not testing your son yet because my great grandson went to our local MDA office recently and they also refused to test him

blue_sky (Oct 6, 2008 9:03:39 PM)
hi

froglady (Oct 6, 2008 9:03:46 PM)
Well, well there is the Beck. Welcome aboard my friend.

froglady (Oct 6, 2008 9:03:54 PM)
Beck we have a new chatter tonight

beckdildal (Oct 6, 2008 9:04:03 PM)
hi there froglady:0)

froglady (Oct 6, 2008 9:04:07 PM)
Blue sky, this Beck is a co-host of this chat

froglady (Oct 6, 2008 9:04:18 PM)
How are you Beck and your family?

beckdildal (Oct 6, 2008 9:04:25 PM)
hello blue sky, nice to meet you

blue_sky (Oct 6, 2008 9:04:38 PM)
thanks

froglady (Oct 6, 2008 9:04:51 PM)
Beck, did you hear about Brit? He fell and broke his arm

wolflady (Oct 6, 2008 9:05:03 PM)
i had my son tested when he was 3 yrs old, Blue Sky

beckdildal (Oct 6, 2008 9:05:10 PM)
i caught a cold and my throat was sore so i stayed home today and Mom gave me the evening off

blue_sky (Oct 6, 2008 9:05:16 PM)
did he show signs?

froglady (Oct 6, 2008 9:05:24 PM)
LOL Beck. Thank you to Mom

wolflady (Oct 6, 2008 9:05:26 PM)
no

blue_sky (Oct 6, 2008 9:05:37 PM)
is he ok?

beckdildal (Oct 6, 2008 9:05:44 PM)
hi wolflady

froglady (Oct 6, 2008 9:05:55 PM)
Wolflady, I took all my kids when they were young too, but they do it differently these days unless they can tell by looking that something is going on

wolflady (Oct 6, 2008 9:06:03 PM)
i was curious,,,,,,, yes he is he is nowv 24 and no signs at all

blue_sky (Oct 6, 2008 9:06:14 PM)
that is great!

beckdildal (Oct 6, 2008 9:06:41 PM)
froglady, i thought that they only did DNA testing on children if they show signs

froglady (Oct 6, 2008 9:06:55 PM)
Right Beck, that is the way they do it now

froglady (Oct 6, 2008 9:07:43 PM)
I took my grandson when he was three and even then it was obvious he had FSH, but they still didn't test him because of being pretty sure he had it and not putting him through the testing

beckdildal (Oct 6, 2008 9:07:44 PM)
i read the transcript from last week and saw the bad news that brit fell and broke his arm and is in skilled nursing right now

wolflady (Oct 6, 2008 9:07:54 PM)
the doctor looked at him when i went for my appt in july at the Clinic,,he said he believes he is fine without another blood test

froglady (Oct 6, 2008 9:08:32 PM)
It is interesting how the MDA doctors can really tell just by looking even when they are small, but it has been my experience that they can tell

blue_sky (Oct 6, 2008 9:08:46 PM)
A few weeks ago I tried to make an appointment at the clinic and the first avail is Feb 19 - is that typical?

froglady (Oct 6, 2008 9:09:04 PM)
Wow, blue sky, certainly not typical in Tucson

wolflady (Oct 6, 2008 9:09:09 PM)
they also said that my granddaughter should be okay because they believe i didn't pass the gene on,,,,,,,,,,sure hope they are right

beckdildal (Oct 6, 2008 9:09:11 PM)
yes, very typical to have to wait

beckdildal (Oct 6, 2008 9:09:28 PM)
i make my appointments up to 6 months in advance

froglady (Oct 6, 2008 9:09:30 PM)
We have two clinics in Tucson

blue_sky (Oct 6, 2008 9:09:51 PM)
I will make advance appointments when I go

froglady (Oct 6, 2008 9:10:18 PM)
Tomorrow night there is going to be a meeting to set up a support group for those who have FSH, but unfortunately I can't go because it is in the evening and we don't see good enough to drive after dark

beckdildal (Oct 6, 2008 9:10:30 PM)
i go to the university of washington, but theer is a children's clinic at the Children's regional med center

wolflady (Oct 6, 2008 9:11:04 PM)
we have 2 clinics in Minnesota too actually i could go to 3 different places The University, the Mayo and in Duluth

beckdildal (Oct 6, 2008 9:11:13 PM)
blue_sky, how often do you expect to go to clinic?

blue_sky (Oct 6, 2008 9:11:18 PM)
I really thought it was time to get more involved. I do not know anyone else with this disease, let alone any other form of MD

froglady (Oct 6, 2008 9:11:20 PM)
Wow, Wolf, that is great

blue_sky (Oct 6, 2008 9:11:35 PM)
I am not sure, but have not been seen in over 3 years

beckdildal (Oct 6, 2008 9:11:44 PM)
we're glad you joined us tonight then

blue_sky (Oct 6, 2008 9:11:57 PM)
thanks

beckdildal (Oct 6, 2008 9:12:14 PM)
sometimes it is easier to get in for an emergency appointment when you are seen on a regular basis, such as once a yr

beckdildal (Oct 6, 2008 9:12:58 PM)
right now i'm trying to get my mom a hospital bed and i called the md clinic to see if her doctor will help

blue_sky (Oct 6, 2008 9:13:04 PM)
I figured on once a year and I always can go to see neurologist at his office instead of clinic

froglady (Oct 6, 2008 9:13:11 PM)
Just FYI I have only lost one football game in Fantasy this year and this is the 5th week. LOL

blue_sky (Oct 6, 2008 9:13:27 PM)
wtg!

beckdildal (Oct 6, 2008 9:13:31 PM)
that sounds reasonable blue_sky

wolflady (Oct 6, 2008 9:13:31 PM)
lol thats great froglady Congrats

froglady (Oct 6, 2008 9:13:39 PM)
Thanks!

froglady (Oct 6, 2008 9:14:35 PM)
This past year I have lost the muscles in my fanny and I had such a nice one. LOL

beckdildal (Oct 6, 2008 9:14:47 PM)
how much time do you spend on your fantasy football froglady?

birdlegs (Oct 6, 2008 9:14:57 PM)
(This user has entered FSHD Chat)

froglady (Oct 6, 2008 9:15:07 PM)
Hello there the Birdie. Welcome aboard

blue_sky (Oct 6, 2008 9:15:11 PM)
Hello!

froglady (Oct 6, 2008 9:15:24 PM)
Beck, probably about 3 hours a week. You have to do a lot of research to win

wolflady (Oct 6, 2008 9:15:35 PM)
you are such a nut , froglady, i love it lol

froglady (Oct 6, 2008 9:15:39 PM)
LOL

birdlegs (Oct 6, 2008 9:15:44 PM)
hello you all

beckdildal (Oct 6, 2008 9:15:45 PM)
hi there birdlegs

wolflady (Oct 6, 2008 9:15:51 PM)
hi birdie

gypsy (Oct 6, 2008 9:16:07 PM)
(This user has entered FSHD Chat)

birdlegs (Oct 6, 2008 9:16:15 PM)
hi gypsy

wolflady (Oct 6, 2008 9:16:15 PM)
hi gypsy

jo-s (Oct 6, 2008 9:16:22 PM)
(This user has entered FSHD Chat)

blue_sky (Oct 6, 2008 9:16:23 PM)
hi gypsy

birdlegs (Oct 6, 2008 9:16:23 PM)
how is everyone tonight?

froglady (Oct 6, 2008 9:16:24 PM)
Well, well Gypsy. Welcome back. Me and Jo were wondering today where you were

beckdildal (Oct 6, 2008 9:16:25 PM)
hi gypsy:0)

blue_sky (Oct 6, 2008 9:16:29 PM)
hi jo-s

froglady (Oct 6, 2008 9:16:29 PM)
Hey there is that Jo

beckdildal (Oct 6, 2008 9:16:44 PM)
hello jo;0)

wolflady (Oct 6, 2008 9:16:47 PM)
hi jo good to see everyone back agsain

birdlegs (Oct 6, 2008 9:16:49 PM)
hi jo

froglady (Oct 6, 2008 9:17:06 PM)
It is good to have a good turn-out tonight. We haven't been so busy here lately

gypsy (Oct 6, 2008 9:17:10 PM)
hi all

jo-s (Oct 6, 2008 9:17:12 PM)
hello everyone. Jim and I have just now got on this computer.

froglady (Oct 6, 2008 9:17:36 PM)
Tell Papa to watch for snakes on his way home Jo

birdlegs (Oct 6, 2008 9:18:04 PM)
by all means, jo

froglady (Oct 6, 2008 9:18:33 PM)
Blue sky, Jo is my twin sister

wolflady (Oct 6, 2008 9:18:35 PM)
brb halftime, 20-10 time for water refill

froglady (Oct 6, 2008 9:18:38 PM)
She lives next door to me

jo-s (Oct 6, 2008 9:18:39 PM)
Ok, he's been told. He says those snakes better watch out for him

blue_sky (Oct 6, 2008 9:18:45 PM)
ok

froglady (Oct 6, 2008 9:19:22 PM)
Gypsy, what has been happening in AU?

birdlegs (Oct 6, 2008 9:19:29 PM)
wheres brit tonight

froglady (Oct 6, 2008 9:19:51 PM)
Birdie, Brit fell and broke his arm and is in a skilled nursing facility :(

beckdildal (Oct 6, 2008 9:19:51 PM)
i hope you have good lighting...to see the snakes!

gypsy (Oct 6, 2008 9:19:54 PM)
don't know i haven;t taken my head out fo the sand to look

birdlegs (Oct 6, 2008 9:20:24 PM)
oh no...I remember now...getting old I guess....

birdlegs (Oct 6, 2008 9:20:32 PM)
me that is

froglady (Oct 6, 2008 9:21:02 PM)
We had a huge snake track in our yard this past week

birdlegs (Oct 6, 2008 9:21:15 PM)
yikes!!!!

gypsy (Oct 6, 2008 9:21:21 PM)
oh no froglady i hadn't hear that :(

froglady (Oct 6, 2008 9:22:00 PM)
Gypsy, Jo's son is maybe going to be coming down there pretty soon. He fixes helicopters that put out fires

jo-s (Oct 6, 2008 9:22:05 PM)
Froggie, let me know when Jim gets in the house.

froglady (Oct 6, 2008 9:22:10 PM)
Will do Jo

froglady (Oct 6, 2008 9:22:21 PM)
I am going to check. brb

jo-s (Oct 6, 2008 9:23:00 PM)
Not me son, my son-in-law froggie.

gypsy (Oct 6, 2008 9:23:05 PM)
has anyone talked to brit how is he doing ?

gypsy (Oct 6, 2008 9:23:27 PM)
you get a helicopter ride jo ?

wolflady (Oct 6, 2008 9:23:37 PM)
froglady said no new news on brit this week :-(

jo-s (Oct 6, 2008 9:24:14 PM)
No Gypsy. I don't get to go where he works.

gypsy (Oct 6, 2008 9:24:50 PM)
:(

wolflady (Oct 6, 2008 9:24:53 PM)
oh why not Jo, i think that would be fun and interesting to see

birdlegs (Oct 6, 2008 9:24:53 PM)
i've been in a copter before and I didn't like it...

froglady (Oct 6, 2008 9:25:16 PM)
He's in Jo. Safe and sound. LOL

jo-s (Oct 6, 2008 9:25:31 PM)
Helicopter rides makes me think of mercy flights to hospitals.

jo-s (Oct 6, 2008 9:25:51 PM)
Ok froggie.

birdlegs (Oct 6, 2008 9:25:52 PM)
it was my first time to ever fly...

froglady (Oct 6, 2008 9:25:59 PM)
Wolf, the Vikings are my DST so I am doing well tonight. LOL

birdlegs (Oct 6, 2008 9:26:04 PM)
it was really windy that day too...

froglady (Oct 6, 2008 9:26:20 PM)
So birdie, you took a ride in a bird. lol

jo-s (Oct 6, 2008 9:26:20 PM)
Birdie, was it a ride just for fun?

wolflady (Oct 6, 2008 9:26:38 PM)
i would like to gom up in a helicopter but how to get in one would be a challenge in itself i think

froglady (Oct 6, 2008 9:27:00 PM)
Right, wolf, how could we manage that?

jo-s (Oct 6, 2008 9:27:19 PM)
You are right there wolflady. I wouldn't be able to even ride in a plane if they didn't wheelchair me.

froglady (Oct 6, 2008 9:27:33 PM)
I was offered a ride in a glider, but couldn't figure out how to get out and in so had to decline

froglady (Oct 6, 2008 9:27:46 PM)
We have a gliderport a few miles from us

birdlegs (Oct 6, 2008 9:28:05 PM)
no, they needed some extra people in the copter at work so I got volunteered because I had never flown before...they needed the extra weight because it was so windy...ther were 3 others besides me...

froglady (Oct 6, 2008 9:28:05 PM)
Jo, how are you feeling tonight?

jo-s (Oct 6, 2008 9:28:18 PM)
A little better.

froglady (Oct 6, 2008 9:28:38 PM)
Oh my goodness Birdie. You were pretty brave

jo-s (Oct 6, 2008 9:28:43 PM)
Do any of you get the IV's for osteoporous?

birdlegs (Oct 6, 2008 9:28:59 PM)
not really...I almost got sick...

wolflady (Oct 6, 2008 9:29:20 PM)
blue sky, where are you from?

blue_sky (Oct 6, 2008 9:29:30 PM)
Lancaster, PA

froglady (Oct 6, 2008 9:29:31 PM)
Gypsy, are you getting warmer weather yet?

wolflady (Oct 6, 2008 9:29:43 PM)
ok i'm in minnesota

birdlegs (Oct 6, 2008 9:30:11 PM)
im in Mississippi, blue sky

froglady (Oct 6, 2008 9:30:15 PM)
I believe blue-sky is our first chatter from PA

jo-s (Oct 6, 2008 9:30:20 PM)
Beck, how are your parents?

blue_sky (Oct 6, 2008 9:30:27 PM)
the group is pretty spread out

gypsy (Oct 6, 2008 9:30:34 PM)
some days forglady it's bee cold and wet again coulpe of days nice at the weekend

froglady (Oct 6, 2008 9:30:55 PM)
We sure are blue_sky. That makes the chats even more interesting

blue_sky (Oct 6, 2008 9:31:03 PM)
sure does

wolflady (Oct 6, 2008 9:31:04 PM)
thats here to gypsy cold and rainy

froglady (Oct 6, 2008 9:31:05 PM)
Gypsy is from Australia. Isn't that cool

blue_sky (Oct 6, 2008 9:31:20 PM)
what time is it there in Australia?

jo-s (Oct 6, 2008 9:31:25 PM)
Gypsy, what time of year is it there - like summer, winter, etc.

gypsy (Oct 6, 2008 9:31:52 PM)
spring

jo-s (Oct 6, 2008 9:32:03 PM)
I will try to find out what part of Australia Mike is going to.

jo-s (Oct 6, 2008 9:32:12 PM)
I will tell him I have a friend there.

gypsy (Oct 6, 2008 9:32:12 PM)
we have the opersite to you

beckdildal (Oct 6, 2008 9:32:19 PM)
jo, my dad seems to be settling in to his new surroundings

gypsy (Oct 6, 2008 9:32:27 PM)
it would be autunm/ fall there ?

wolflady (Oct 6, 2008 9:32:37 PM)
yes gypsy

gypsy (Oct 6, 2008 9:33:00 PM)
tha't s good beck it's a big a justment to make

jo-s (Oct 6, 2008 9:33:03 PM)
It is Autumn here Gypsy, but it still feels like summer.

gypsy (Oct 6, 2008 9:33:10 PM)
how is your mum doing ?

wolflady (Oct 6, 2008 9:33:17 PM)
only in AZ jo lol

beckdildal (Oct 6, 2008 9:33:29 PM)
mom is having more problems with mobility and esp her left leg gives way one her. at home she is using the powerchair more

blue_sky (Oct 6, 2008 9:33:42 PM)
it feels like fall here in PA - leaves are changing

jo-s (Oct 6, 2008 9:33:45 PM)
I remember how it was with Dad and Ray. I don't think they ever did really settle in to it entirely.

birdlegs (Oct 6, 2008 9:33:51 PM)
jo, you and froggy don;t know what cold weather is, do you?

wolflady (Oct 6, 2008 9:34:19 PM)
leaves are falling as soon as they change here, no nice fall color this year

gypsy (Oct 6, 2008 9:34:24 PM)
is she at home by herself beck ?

gypsy (Oct 6, 2008 9:34:51 PM)
no it's hard jo

beckdildal (Oct 6, 2008 9:35:05 PM)
the staff have been very encouraging jo, saying that he is a different man than when he first came

jo-s (Oct 6, 2008 9:35:12 PM)
Not since we were children birdie. We were born and lived in Oklahoma until we were fourteen I believe it was. It got snow there

beckdildal (Oct 6, 2008 9:35:32 PM)
she does have a caregiver gypsy, who comes during the day, but at night she is by herself

gypsy (Oct 6, 2008 9:36:27 PM)
that would be a bit of a worry for you beck

jo-s (Oct 6, 2008 9:36:32 PM)
It seems that we just get through taking care of our parents and going through all we go through and then it is time for our children to do the same for us..

birdlegs (Oct 6, 2008 9:36:36 PM)
guys, I hate it but I am going to have to call it a night...really tired today for some reason...you all have a blessed week....

jo-s (Oct 6, 2008 9:36:54 PM)
You too birdie.

blue_sky (Oct 6, 2008 9:36:59 PM)
good night

wolflady (Oct 6, 2008 9:37:04 PM)
gn birdie have a great week and get a good night sleep

froglady (Oct 6, 2008 9:37:06 PM)
Oh okay Birdie. Have a safe and happy week

birdlegs (Oct 6, 2008 9:37:09 PM)
nite

birdlegs (Oct 6, 2008 9:37:14 PM)
(This user has left DigiChat)

gypsy (Oct 6, 2008 9:37:23 PM)
night birdlegs tc

jo-s (Oct 6, 2008 9:37:46 PM)
gypsy, what part of Australia do you live in.

froglady (Oct 6, 2008 9:38:08 PM)
Blue-sky, you say you work at a desk?

beckdildal (Oct 6, 2008 9:38:16 PM)
gypsy, how is your mom doing and have you been to see her lately?

blue_sky (Oct 6, 2008 9:38:20 PM)
mostly

gypsy (Oct 6, 2008 9:38:22 PM)
counrty victoria

jo-s (Oct 6, 2008 9:38:39 PM)
Ok gypsy.

gypsy (Oct 6, 2008 9:38:55 PM)
yes was there on firday beck she seems a little better for now doctor seems to have her meds right for now

jo-s (Oct 6, 2008 9:39:04 PM)
I don't know what part mike will be in. He works of helicopters that fight fires.

wolflady (Oct 6, 2008 9:39:40 PM)
froglady, i'm now up to 300 dollars on the fund raing stride and ride walk for MDA coming up on the 18th i doubled my goal, i'm kinda happy

gypsy (Oct 6, 2008 9:40:01 PM)
there are fires in may parts including this are sometimes jo

wolflady (Oct 6, 2008 9:40:03 PM)
fund raising

gypsy (Oct 6, 2008 9:40:05 PM)
many

froglady (Oct 6, 2008 9:40:13 PM)
That is really great wolf. You should be proud of yourself. I didn't do so well, but at least I tried

jo-s (Oct 6, 2008 9:40:14 PM)
That's great wolflady.

gypsy (Oct 6, 2008 9:40:24 PM)
that's great wolflady

beckdildal (Oct 6, 2008 9:40:34 PM)
blue sky do you work at a computer for your job?

wolflady (Oct 6, 2008 9:40:40 PM)
thanks everyone

blue_sky (Oct 6, 2008 9:40:53 PM)
yes, and do a lot of paper pushing, too

jo-s (Oct 6, 2008 9:41:26 PM)
No one answered me about the IV thing with osteopourous.

blue_sky (Oct 6, 2008 9:41:57 PM)
I am not diagnosed with osteoporosis

wolflady (Oct 6, 2008 9:42:02 PM)
at least its a job,,,,wish i could get one,,,,,,,but i would need one to do at home especially with winter coming,,,,,,,,,

gypsy (Oct 6, 2008 9:42:14 PM)
sorry jo i don't have it as yet fortunatly

wolflady (Oct 6, 2008 9:42:15 PM)
i don't jo, i don't have that

blue_sky (Oct 6, 2008 9:42:17 PM)
Oh, I detest winter

beckdildal (Oct 6, 2008 9:42:26 PM)
i missed that jo

gypsy (Oct 6, 2008 9:42:34 PM)
you could try talking ot hen do you know here jo ?

gypsy (Oct 6, 2008 9:42:39 PM)
her

jo-s (Oct 6, 2008 9:42:44 PM)
That is so good to hear from all of you. I have it pretty bad.

beckdildal (Oct 6, 2008 9:42:44 PM)
my bone strength is good so i don't have to take anything

wolflady (Oct 6, 2008 9:43:08 PM)
i have severe lordosis instead,,,,,,,

froglady (Oct 6, 2008 9:43:18 PM)
Blue_sky, you should do your winters in AZ. You would love it here, but you would not like it all in the summer

blue_sky (Oct 6, 2008 9:43:34 PM)
oh - I love the heat!

blue_sky (Oct 6, 2008 9:43:48 PM)
maybe not AZ hot, though

jo-s (Oct 6, 2008 9:43:59 PM)
What exactly is lordosis wolflady?

wolflady (Oct 6, 2008 9:44:09 PM)
today i noticed my back was so bad i could barely see in the bathroom mirror,,,,,,,i was wondering who raised the mirror on me lol

wolflady (Oct 6, 2008 9:44:37 PM)
my back is bending backwards instead of forward , jo

beckdildal (Oct 6, 2008 9:44:44 PM)
jo lordosis is a curvature of the lower back

froglady (Oct 6, 2008 9:44:57 PM)
Jo, Lordosis is like Eddie and Danny are

jo-s (Oct 6, 2008 9:45:09 PM)
I don't remember hen, gypsy.

beckdildal (Oct 6, 2008 9:45:16 PM)
when the abdominal muscles weaken it makes the abdomen protrude and causes the back to bow

froglady (Oct 6, 2008 9:45:17 PM)
Blue sky, we have many in our family with FSH

jo-s (Oct 6, 2008 9:45:39 PM)
I bend forward instead of backward.

blue_sky (Oct 6, 2008 9:45:47 PM)
I guess I am the first in my family.

gypsy (Oct 6, 2008 9:45:56 PM)
jo she goes to wheelchair and lgmd chats she may be albe to help you

blue_sky (Oct 6, 2008 9:46:12 PM)
At least the first with the problem and subsequent diagnosis

jo-s (Oct 6, 2008 9:46:18 PM)
thanks gypsy.

wolflady (Oct 6, 2008 9:46:18 PM)
i'm with you blue sky i love the heat too,,,,,,,,,,,i dread winter with the cold and ice

blue_sky (Oct 6, 2008 9:46:31 PM)
I am so afraid of falling

jo-s (Oct 6, 2008 9:46:47 PM)
I inagine you winrter people will have to stay in most of the winter, huh.

beckdildal (Oct 6, 2008 9:46:49 PM)
my aunt was the first to be diagnosed, then me, then my mom, brother and cousin

gypsy (Oct 6, 2008 9:47:00 PM)
i wouldn't like ot have to deal with snow and ice but i find the heat so draining

wolflady (Oct 6, 2008 9:47:10 PM)
me too and seems like i am starting to give the floor hugs more often than they deserve it lol

beckdildal (Oct 6, 2008 9:47:26 PM)
do you trip often blue-sky?

gypsy (Oct 6, 2008 9:47:36 PM)
that's no good wolflady do you use a cane or walker ?

jo-s (Oct 6, 2008 9:47:37 PM)
Lol wolflady. Froggie and I have had our share of that.

wolflady (Oct 6, 2008 9:47:48 PM)
gypsy,,,,,,,is it the heat or humidity?

gypsy (Oct 6, 2008 9:48:08 PM)
mostly heat but we do have a few humid days

gypsy (Oct 6, 2008 9:48:18 PM)
the hear exasuets me so much

blue_sky (Oct 6, 2008 9:48:20 PM)
yes, I trip a lot. Have not fallen as much lately, but it comes in phases

wolflady (Oct 6, 2008 9:48:21 PM)
i use a walking stick i can't use cane or walker because i can't bend forward

blue_sky (Oct 6, 2008 9:48:59 PM)
beck - how is everyone doing in your family?

gypsy (Oct 6, 2008 9:49:02 PM)
there are high walker that you rest you elbows on my used to haveone not sure of the name

gypsy (Oct 6, 2008 9:49:14 PM)
mum

jo-s (Oct 6, 2008 9:49:17 PM)
How are you doing Beck - walking I mean.

wolflady (Oct 6, 2008 9:49:32 PM)
thay don't work for me , gypsy

jo-s (Oct 6, 2008 9:50:22 PM)
I notice that me brother and nephew can't use canes or walkers either. Froggie have you noticed that.

wolflady (Oct 6, 2008 9:50:27 PM)
my back is so bad i can't see my feet and more i get really nervous on steps its all by feel and counting now when i go down them

beckdildal (Oct 6, 2008 9:50:29 PM)
my mom uses a walker and powerchair, but she is in her 80s. i'm in my late 40s and i still walk, use braces on my legs to prevent me from tripping, and sometimes use a rollater.

jo-s (Oct 6, 2008 9:50:33 PM)
That is probably the reason.

froglady (Oct 6, 2008 9:50:35 PM)
Wolf, my brother and nephew that I just mentioned couldn't even use a cane because it throws them off balance

gypsy (Oct 6, 2008 9:50:35 PM)
sorry wolflady

beckdildal (Oct 6, 2008 9:50:57 PM)
my shoulders have been bothering me lately and i feel like my arms are getting weaker

wolflady (Oct 6, 2008 9:51:09 PM)
no need to be sorry gypsy,,,,,,,,,its all part of life

gypsy (Oct 6, 2008 9:51:23 PM)
i an having the same proablems beck my arms are getting so bad

jo-s (Oct 6, 2008 9:51:27 PM)
That is too bad beck. I imagine it is because you use them so much at work.

blue_sky (Oct 6, 2008 9:51:36 PM)
me, too - i pulled a muscle twice in left shoulder and neck a few weeks ago and has not been the same since

gypsy (Oct 6, 2008 9:51:38 PM)
they not much using in holding me up on my sitcks anymore

froglady (Oct 6, 2008 9:51:39 PM)
As you all know there was a 9 million grant approved for FSH. Lets just hope they come up with something

gypsy (Oct 6, 2008 9:51:53 PM)
i get weekly physio that helps me alot

blue_sky (Oct 6, 2008 9:52:21 PM)
gypsy - what do they do for you?

froglady (Oct 6, 2008 9:52:24 PM)
Blue-sky your neck can really get out of whack with a desk job. At least it did with me. I also did clerical work

gypsy (Oct 6, 2008 9:52:34 PM)
the physio ?

jo-s (Oct 6, 2008 9:52:38 PM)
That is great gypsy. I wish froggie and I lived closer to town so we could do that.

blue_sky (Oct 6, 2008 9:52:47 PM)
I did it sleeping :(

gypsy (Oct 6, 2008 9:52:59 PM)
the 30 min drive mkaes it hard jo but i think it's worth it

blue_sky (Oct 6, 2008 9:53:04 PM)
yes gypsy

gypsy (Oct 6, 2008 9:53:33 PM)
just masarge and streching undoing some of the knots in my muscles helps keep me moving and walking

wolflady (Oct 6, 2008 9:53:37 PM)
my neck has been out of wack for a long time,,,,,,i can't turn my head and look over my shoulder it hurts

gypsy (Oct 6, 2008 9:53:56 PM)
you should get it looked at wolflady that not good :(

jo-s (Oct 6, 2008 9:54:02 PM)
Froggie and I are old enough to probably be most of your parents lol

gypsy (Oct 6, 2008 9:54:11 PM)
i have much more neck movemnt now

blue_sky (Oct 6, 2008 9:54:11 PM)
thats the way it was for a few days, but got better, just not completely better wolf

froglady (Oct 6, 2008 9:54:13 PM)
Wolf, I do exercises all the time to keep my neck in shape. It helps, but doesn't totally do the trick

wolflady (Oct 6, 2008 9:54:36 PM)
what kind of exercise froglady?

gypsy (Oct 6, 2008 9:54:43 PM)
i should do more exercies but i get so tired i can't be bother you do so well forglady

jo-s (Oct 6, 2008 9:54:50 PM)
I do passive exercises.

blue_sky (Oct 6, 2008 9:54:52 PM)
gypsy - do you have to pay for that?

wolflady (Oct 6, 2008 9:54:58 PM)
i need to do something its been like this for more than 6 months

froglady (Oct 6, 2008 9:55:12 PM)
I turn my head in each direction as far as I can and hold it to a count of five, then I tuck my head for the same count. My PT told me to do it that way

gypsy (Oct 6, 2008 9:55:14 PM)
i used to now i have some funding that helps me

blue_sky (Oct 6, 2008 9:55:24 PM)
good for you!

froglady (Oct 6, 2008 9:55:27 PM)
But I must tell you all that my neck is my biggest problem, pain wise

gypsy (Oct 6, 2008 9:55:50 PM)
the neck takes a lot fo strain when the other muscles don't work forglady

froglady (Oct 6, 2008 9:56:05 PM)
brb

jo-s (Oct 6, 2008 9:56:18 PM)
Froggie wears a neckbrace a lot. That helps her.

wolflady (Oct 6, 2008 9:56:35 PM)
thats what i noticed gypsy,,,,the worst my back got the more my neck tightened up

blue_sky (Oct 6, 2008 9:56:40 PM)
I have to head to bed. It was nice chatting with all of you. Talk to you later.

jo-s (Oct 6, 2008 9:56:53 PM)
I have begun wearing a brace around my middle when I am going to do much.

gypsy (Oct 6, 2008 9:56:55 PM)
why it's good to get some owrk on it if you can wolfday

gypsy (Oct 6, 2008 9:57:00 PM)
wolflady

wolflady (Oct 6, 2008 9:57:05 PM)
good night blue sky,,,,,,,,join us again have a great week

gypsy (Oct 6, 2008 9:57:24 PM)
night blue sky tc

blue_sky (Oct 6, 2008 9:57:34 PM)
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jo-s (Oct 6, 2008 9:58:15 PM)
My back hurts when I am on the computer too long.

gypsy (Oct 6, 2008 9:58:37 PM)
my arms hurt a lot on the computer now

gypsy (Oct 6, 2008 9:59:05 PM)
i use a heat back on my neck and back when i am here jo

jo-s (Oct 6, 2008 9:59:07 PM)
Are we all falling asleep. lol

wolflady (Oct 6, 2008 9:59:09 PM)
my hips and legs do from sitting in front of the computer

gypsy (Oct 6, 2008 9:59:40 PM)
yes i have pralboms with my hips too

gypsy (Oct 6, 2008 9:59:49 PM)
use heat pack on them too

wolflady (Oct 6, 2008 9:59:50 PM)
i'm not jo,,,,,,,,just watching the Viking-Saints game at the same time

jo-s (Oct 6, 2008 9:59:58 PM)
Well at least we can still come on the chat even with all our aches and pains. lol

jo-s (Oct 6, 2008 10:00:46 PM)
Froggie and Jim watch football all the time. I was over there yesterday and they were explaining the game to me.

wolflady (Oct 6, 2008 10:01:14 PM)
i watch it all the time too every sunday and monday nights

gypsy (Oct 6, 2008 10:01:25 PM)
yes it great to be able to come and chat i i don't seem to be able to get here much latey

jo-s (Oct 6, 2008 10:01:25 PM)
I told them when they fall all over the top of one man it looks like they are trying to do him in. lol

gypsy (Oct 6, 2008 10:01:35 PM)
to amny things on at the wrong times

gypsy (Oct 6, 2008 10:01:59 PM)
afraid i never did work out you football there

wolflady (Oct 6, 2008 10:02:46 PM)
i like our chats,,,,,,,,,,its nice to talk with people who know what you are going through,,,,,,,,,,,,my brother has FSH to but he doesn't want to talk about it

jo-s (Oct 6, 2008 10:02:55 PM)
I like base ball and basket ball better than football.

beckdildal (Oct 6, 2008 10:03:11 PM)
neither does my brother wolflady

jo-s (Oct 6, 2008 10:03:20 PM)
That seems to be the way with a lot of our family too wolflady.

wolflady (Oct 6, 2008 10:03:25 PM)
my dad never did either

gypsy (Oct 6, 2008 10:03:36 PM)
same with my sister wolflady

wolflady (Oct 6, 2008 10:03:50 PM)
that makes it hard

jo-s (Oct 6, 2008 10:03:52 PM)
It is like if we don't talk about it , it isn't there.

gypsy (Oct 6, 2008 10:04:12 PM)
here is a bout the only place i can find anyone to talk to and i don't know how you all mamage so well

wolflady (Oct 6, 2008 10:04:19 PM)
exactly,,,,,,,,,,,,,,thats what they thought about the ALS in the family too

gypsy (Oct 6, 2008 10:04:24 PM)
cuase i struggle also latley

jo-s (Oct 6, 2008 10:05:26 PM)
I was wondering where you were gypsy. I haven't been on a lot either but now I will try better to come on. I also love to talk to all of you. I think we don't feel so blue about ourselves when we talk to others who are goingthrough the same thing.

wolflady (Oct 6, 2008 10:05:35 PM)
i just taught myself that this is life for me, so i try and make it the best i can every day, gypsy only way i survive

beckdildal (Oct 6, 2008 10:06:06 PM)
it was gr8 to be able to get on and chat this week

jo-s (Oct 6, 2008 10:06:06 PM)
Thats the way gypsy.

jo-s (Oct 6, 2008 10:06:31 PM)
Beck, sorry I haven't been on more lately. I will try to do better.

beckdildal (Oct 6, 2008 10:06:38 PM)
i'm going to say goodnight now and hope to c u next week

gypsy (Oct 6, 2008 10:06:51 PM)
i can't seem to accept that wolflady i need to be able ot do things and i am not coping iwth not beign able to

jo-s (Oct 6, 2008 10:06:54 PM)
Good night Beck. Give our love to your parents.

wolflady (Oct 6, 2008 10:07:01 PM)
good night beck have a great week

gypsy (Oct 6, 2008 10:07:05 PM)
night beck tc good to catch up

beckdildal (Oct 6, 2008 10:07:07 PM)
it's ok jo i understand and have been having a hard time too

gypsy (Oct 6, 2008 10:07:23 PM)
you have had a lot to deal with jo

jo-s (Oct 6, 2008 10:07:32 PM)
We all need to say prayers for Brit this week.

beckdildal (Oct 6, 2008 10:07:32 PM)
goodnight all!

beckdildal (Oct 6, 2008 10:08:07 PM)
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jo-s (Oct 6, 2008 10:08:09 PM)
Brit, if you read this we are all thinking and praying for you. Hang in there and be tough.

wolflady (Oct 6, 2008 10:08:49 PM)
i understand, gypsy,,,,,i was at that point once too,,,,,,,,,,but as my muscles got weaker, i learned to accept it its the only way i could survive,,,,,,,,then i learned to laugh and joke,,,,,,,,,,,life is to short to cry

jo-s (Oct 6, 2008 10:09:46 PM)
Our whole family has a good sense of humor. When we all get together it is something to see how we carry on. That helps all of us.

gypsy (Oct 6, 2008 10:09:54 PM)
i am glad you have been able to reach that point wolflady i'm not sure i can

wolflady (Oct 6, 2008 10:09:59 PM)
i concider myself lucky after losing my mom and 2 sisters to ALS all before they were 41

jo-s (Oct 6, 2008 10:10:19 PM)
I didn/t know that wolflady. I am so sorry.

gypsy (Oct 6, 2008 10:10:28 PM)
hugs wolflady i'm sorry i didn't know that

jo-s (Oct 6, 2008 10:10:30 PM)
So what is your MD, wolflady?

wolflady (Oct 6, 2008 10:10:41 PM)
i have FSH

gypsy (Oct 6, 2008 10:11:02 PM)
si you have als and fshd in your family that would be very unusual ?

jo-s (Oct 6, 2008 10:11:09 PM)
I have never heard of one family having two types of the disease.

wolflady (Oct 6, 2008 10:11:21 PM)
thats what all the doctors say too

gypsy (Oct 6, 2008 10:11:22 PM)
so

wolflady (Oct 6, 2008 10:11:28 PM)
lol

froglady (Oct 6, 2008 10:11:39 PM)
Sorry about that. Jo when you get off chat your niece wants to talk to you

froglady (Oct 6, 2008 10:11:51 PM)
We have 2 minutes left for tonight's chat

jo-s (Oct 6, 2008 10:11:53 PM)
Wolflady, how long did they live after diagnosis

wolflady (Oct 6, 2008 10:12:11 PM)
roughly 3 to 3 1/2 years

jo-s (Oct 6, 2008 10:12:35 PM)
I had a friend that had ALS and that is about the same for her.

jo-s (Oct 6, 2008 10:12:51 PM)
I believe now that their life span can be longer though.

froglady (Oct 6, 2008 10:12:58 PM)
There is an ALS that is familial.

jo-s (Oct 6, 2008 10:13:17 PM)
I didn't realize that froggie.

wolflady (Oct 6, 2008 10:13:42 PM)
for some the life span has been longer i know a guy wh supposedly has had it for more than 10 years now

jo-s (Oct 6, 2008 10:13:54 PM)
Ok I will call her froggie. I am assuming it is the Tucson one?

froglady (Oct 6, 2008 10:14:02 PM)
I know a family who has a reunion every year and nurses from a university come to the reunion and take blood from some of the members because of ALS being heriditary in their case

froglady (Oct 6, 2008 10:14:10 PM)
Right Jo

gypsy (Oct 6, 2008 10:14:36 PM)
thanks for the chat everyone night tc

froglady (Oct 6, 2008 10:14:40 PM)
Jo she is talking to Jim right now. She knows you will be off the chat soon and will call you

wolflady (Oct 6, 2008 10:14:41 PM)
we found out it was hereditary after my 2 sisters were diagnosed

jo-s (Oct 6, 2008 10:14:47 PM)
I will say good night to all. It has been a good chat. Have a nice week.

froglady (Oct 6, 2008 10:15:10 PM)
I will say goodnight also and hope to see you all again next week. Have a wonderful week

wolflady (Oct 6, 2008 10:15:18 PM)
i am going to say good night too,,,,,,,,,,,,you all have a great week tc

froglady (Oct 6, 2008 10:15:22 PM)
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wolflady (Oct 6, 2008 10:15:29 PM)
good night everyone

wolflady (Oct 6, 2008 10:15:38 PM)
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jo-s (Oct 6, 2008 10:16:08 PM)
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gypsy (Oct 6, 2008 10:16:21 PM)
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