DMD Parent Chat
anna (Jun 19, 2008 8:47:56 PM)
anna (Jun 19, 2008 8:48:55 PM)
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twinglema (Jun 19, 2008 8:52:46 PM)
(This user has entered DMD Parent Chat)
anna (Jun 19, 2008 8:56:49 PM)
(This user has entered DMD Parent Chat)
twinglema (Jun 19, 2008 8:56:58 PM)
Hi anna
anna (Jun 19, 2008 8:56:59 PM)
Hi K
twinglema (Jun 19, 2008 8:57:09 PM)
how are you tonight?
twinglema (Jun 19, 2008 8:57:24 PM)
hey, we have a beach thing going on!
anna (Jun 19, 2008 8:57:25 PM)
ok, but tired
twinglema (Jun 19, 2008 8:57:39 PM)
usual stuff or something else?
anna (Jun 19, 2008 8:57:40 PM)
yes, I miss the beach
twinglema (Jun 19, 2008 8:57:45 PM)
me too
anna (Jun 19, 2008 8:57:53 PM)
new aide at work for R so that is good
twinglema (Jun 19, 2008 8:57:57 PM)
and i dont even live close to one
twinglema (Jun 19, 2008 8:58:06 PM)
well, that IS good news
twinglema (Jun 19, 2008 8:58:30 PM)
how do you handle R and your mom?
anna (Jun 19, 2008 8:58:32 PM)
and we need to jump thru more hoops to keep R's medical coverage since he makes so much money
anna (Jun 19, 2008 8:58:58 PM)
my mom and I took her neighbor of over 50 years out to lunch yesterday...
twinglema (Jun 19, 2008 8:58:59 PM)
some financial planning group talked at a mda support group one
twinglema (Jun 19, 2008 8:59:10 PM)
how did that go?
anna (Jun 19, 2008 8:59:19 PM)
the neighbor had just lost her husband
twinglema (Jun 19, 2008 8:59:32 PM)
you have to set up his finances so he doesnt lose benefits
twinglema (Jun 19, 2008 8:59:38 PM)
how sad
anna (Jun 19, 2008 8:59:38 PM)
the neighbor was so upset that mom was not "herself" anymore
twinglema (Jun 19, 2008 8:59:54 PM)
she has alzeihmers right?
anna (Jun 19, 2008 9:00:04 PM)
and, she isn't. my mom was so social and fun, and is now notinterested in anything
anna (Jun 19, 2008 9:00:14 PM)
no alz.
twinglema (Jun 19, 2008 9:00:19 PM)
my mil is like that too
twinglema (Jun 19, 2008 9:00:24 PM)
dementia?
anna (Jun 19, 2008 9:00:35 PM)
a bit of dementia
anna (Jun 19, 2008 9:00:45 PM)
she says she is just tired and waiting to die
twinglema (Jun 19, 2008 9:00:54 PM)
sounds like my mil
anna (Jun 19, 2008 9:01:06 PM)
so, we are the filling in the sandwish--both you and I
twinglema (Jun 19, 2008 9:01:18 PM)
yes-it is emotionally tiring
anna (Jun 19, 2008 9:01:24 PM)
younger and older to care for
twinglema (Jun 19, 2008 9:01:35 PM)
i drive 8 hrs tomorrow to get l and bring him home
anna (Jun 19, 2008 9:01:51 PM)
I bet he had FUN
twinglema (Jun 19, 2008 9:01:51 PM)
it's infuriating as i do way more than her own daughters
twinglema (Jun 19, 2008 9:01:59 PM)
me too!
twinglema (Jun 19, 2008 9:02:13 PM)
he always cries when we leave then sleeps for 2 hrs!
anna (Jun 19, 2008 9:02:14 PM)
the family will take advantage if you let them
twinglema (Jun 19, 2008 9:02:27 PM)
they just dont care and wonthelp her
anna (Jun 19, 2008 9:02:44 PM)
most cannot wait to get to a toilet after camp---
twinglema (Jun 19, 2008 9:02:47 PM)
ans she gets grumpy at everyone but i a the one she takes it out on
twinglema (Jun 19, 2008 9:03:08 PM)
LOL
anna (Jun 19, 2008 9:03:15 PM)
can you get her into an assisted living situation?
twinglema (Jun 19, 2008 9:03:39 PM)
yes when she has too right now home is best place and i do love her so
twinglema (Jun 19, 2008 9:04:19 PM)
she doesnt get mad at me, just complains i am bosy-i am :0
anna (Jun 19, 2008 9:04:25 PM)
I waited too long and it was too late for assisted living
twinglema (Jun 19, 2008 9:04:29 PM)
:)
twinglema (Jun 19, 2008 9:03:46 PM)
its a balancing act
anna (Jun 19, 2008 9:04:17 PM)
my Mom's doc had told her she was doing fine, so she took that to mean she could stop taking her meds
twinglema (Jun 19, 2008 9:04:32 PM)
a nurse from assisted living place we like is coming to eval her on monday
twinglema (Jun 19, 2008 9:04:42 PM)
Oh NO!
anna (Jun 19, 2008 9:04:50 PM)
I found her a home because after 90 days she was thrown out of nursing home
twinglema (Jun 19, 2008 9:04:59 PM)
thrown out?
anna (Jun 19, 2008 9:05:22 PM)
yes, Medicaid rules if a person is not getting better or worse they cannot stay
twinglema (Jun 19, 2008 9:05:34 PM)
really?
twinglema (Jun 19, 2008 9:05:43 PM)
thats dumb
anna (Jun 19, 2008 9:05:54 PM)
it seemed odd when they told me that--there must be exceptions
twinglema (Jun 19, 2008 9:06:09 PM)
i worked in home for years and never heard of that
anna (Jun 19, 2008 9:06:37 PM)
she is in an Adult Family Home where she gets excellant care for about half of what a nursing home would cost
twinglema (Jun 19, 2008 9:07:12 PM)
i looked into those here but they are only covered by long term insurance which mil doesn't have
twinglema (Jun 19, 2008 9:07:30 PM)
and she can't private pay
anna (Jun 19, 2008 9:07:33 PM)
my gf's mom had to go thru all her savings/money in a nursing home--then died when she went on DSHS
twinglema (Jun 19, 2008 9:08:03 PM)
how sad
anna (Jun 19, 2008 9:08:09 PM)
and long-term insurance that my mom paid for 20 years weaseled out of paying
twinglema (Jun 19, 2008 9:08:19 PM)
how??
anna (Jun 19, 2008 9:08:20 PM)
said pay was only for a real nursing home
twinglema (Jun 19, 2008 9:08:36 PM)
is that what their policy says?
anna (Jun 19, 2008 9:08:52 PM)
no matter my Mom's condition they won't pay unless she goes to nursing home
anna (Jun 19, 2008 9:09:10 PM)
and the Home says they will keep her for life
anna (Jun 19, 2008 9:09:23 PM)
yes, that is what the fine print said
twinglema (Jun 19, 2008 9:09:25 PM)
so how does she pay for the home?
anna (Jun 19, 2008 9:09:53 PM)
private pay
twinglema (Jun 19, 2008 9:10:09 PM)
well i am glad she can do that
anna (Jun 19, 2008 9:10:12 PM)
dad left her money that will last about 10 more years
john.e.bee (Jun 19, 2008 9:10:13 PM)
(This user has entered DMD Parent Chat)
twinglema (Jun 19, 2008 9:10:18 PM)
hi john
anna (Jun 19, 2008 9:10:22 PM)
she is 92
john.e.bee (Jun 19, 2008 9:10:30 PM)
hello =)
twinglema (Jun 19, 2008 9:10:33 PM)
mil is 81 tomorrow
anna (Jun 19, 2008 9:10:46 PM)
Hi John, didn't see you slip in
twinglema (Jun 19, 2008 9:10:48 PM)
welcome john, i am mom to 11 yr old with dmd
john.e.bee (Jun 19, 2008 9:11:12 PM)
hello anna
john.e.bee (Jun 19, 2008 9:11:35 PM)
i am father(and mother) of a 6 year old with DMD
john.e.bee (Jun 19, 2008 9:11:48 PM)
and a 3 year old who got lucky
twinglema (Jun 19, 2008 9:12:02 PM)
how are you and your sons doing?
john.e.bee (Jun 19, 2008 9:12:24 PM)
getting by... one day at a time
anna (Jun 19, 2008 9:12:38 PM)
I met John last night so he knows about us
twinglema (Jun 19, 2008 9:12:40 PM)
thats about all we can do
twinglema (Jun 19, 2008 9:12:54 PM)
ah-hope she told you good things ;)
anna (Jun 19, 2008 9:13:09 PM)
few come to the Weds. night chat anymore except for momma
john.e.bee (Jun 19, 2008 9:13:21 PM)
of course
twinglema (Jun 19, 2008 9:13:27 PM)
i am at church that night
john.e.bee (Jun 19, 2008 9:13:44 PM)
brb. kids are fighting ;)
twinglema (Jun 19, 2008 9:14:03 PM)
i am down to one kid so it is quiet here
anna (Jun 19, 2008 9:14:34 PM)
R is tired--they are under deadline and the stress is high
twinglema (Jun 19, 2008 9:15:01 PM)
poor guy
anna (Jun 19, 2008 9:15:19 PM)
everyone is amazed he is working full-time
john.e.bee (Jun 19, 2008 9:15:32 PM)
back
twinglema (Jun 19, 2008 9:15:33 PM)
i knoe i am
twinglema (Jun 19, 2008 9:15:36 PM)
wb
twinglema (Jun 19, 2008 9:15:50 PM)
i have twin 11 yr olds so i und fighting
anna (Jun 19, 2008 9:15:54 PM)
tomorrow a new nurse is coming to evaluate him and assign how many "hours" we get each month
twinglema (Jun 19, 2008 9:16:11 PM)
hope she knows what she is doing
anna (Jun 19, 2008 9:16:17 PM)
whatever hours are not covered by aides I get
twinglema (Jun 19, 2008 9:16:19 PM)
how is your son doing john?
anna (Jun 19, 2008 9:16:34 PM)
paid for I mean
anna (Jun 19, 2008 9:16:51 PM)
of course I work ALL hours
john.e.bee (Jun 19, 2008 9:16:53 PM)
he is doing pretty well at this point.. walking. AFO's for gait correction
twinglema (Jun 19, 2008 9:16:58 PM)
well at least they pay u
twinglema (Jun 19, 2008 9:17:08 PM)
that is good John
anna (Jun 19, 2008 9:17:33 PM)
yes, we need it to help since I only work 2 days a year at my "real job" at the hospital
twinglema (Jun 19, 2008 9:17:35 PM)
mine wears sole inserts for that and afos at night
momma (Jun 19, 2008 9:17:36 PM)
(This user has entered DMD Parent Chat)
twinglema (Jun 19, 2008 9:17:41 PM)
hey momma
anna (Jun 19, 2008 9:17:43 PM)
Hi Momma
anna (Jun 19, 2008 9:17:55 PM)
Momma had to leave just as John came last night
momma (Jun 19, 2008 9:18:01 PM)
hi
john.e.bee (Jun 19, 2008 9:18:30 PM)
Hi momma. I'm a newbie =)
twinglema (Jun 19, 2008 9:18:35 PM)
momma broke our beach theme!
anna (Jun 19, 2008 9:18:40 PM)
and, my son never wore AFO's until he stopped walking, and never at night. he still wears them
anna (Jun 19, 2008 9:18:59 PM)
the guys who don't wear them get twisted feet and cannot wear shoes
john.e.bee (Jun 19, 2008 9:19:13 PM)
ahh
john.e.bee (Jun 19, 2008 9:19:42 PM)
he has worn them for a couple years but was only diagnosed 2 months ago : /
twinglema (Jun 19, 2008 9:19:56 PM)
really?
anna (Jun 19, 2008 9:20:06 PM)
Momma's son and mine both use non-invasive venting John(instead of having a trach)
twinglema (Jun 19, 2008 9:20:24 PM)
my son was dx'd at age 8
anna (Jun 19, 2008 9:20:31 PM)
mine at 7
twinglema (Jun 19, 2008 9:21:29 PM)
momma?
momma (Jun 19, 2008 9:21:36 PM)
hi john
momma (Jun 19, 2008 9:21:47 PM)
sorry mom in law on phone
twinglema (Jun 19, 2008 9:21:49 PM)
i was kidding about beach thing momma
twinglema (Jun 19, 2008 9:21:54 PM)
aw i c
momma (Jun 19, 2008 9:21:57 PM)
lol
john.e.bee (Jun 19, 2008 9:21:58 PM)
well, i got some hopeful news yesterday...apparently my son's mutation is a nonsense mutation so he may be eligible for the PTC124 trial this year
twinglema (Jun 19, 2008 9:22:07 PM)
awesome
anna (Jun 19, 2008 9:22:14 PM)
that would be great
twinglema (Jun 19, 2008 9:22:45 PM)
what is diff between nonsence mutation and deletions?
john.e.bee (Jun 19, 2008 9:22:58 PM)
im hopeful but restrained too
john.e.bee (Jun 19, 2008 9:23:08 PM)
nonsense is a stop codon mutation
john.e.bee (Jun 19, 2008 9:23:22 PM)
basically terminates the protein early
twinglema (Jun 19, 2008 9:23:29 PM)
ok
john.e.bee (Jun 19, 2008 9:23:51 PM)
PTC124 makes the ribosome read thru the stop sign
twinglema (Jun 19, 2008 9:24:03 PM)
yeah i read that
anna (Jun 19, 2008 9:24:13 PM)
there is some encouraging research
twinglema (Jun 19, 2008 9:24:38 PM)
we are doing well with steroids
twinglema (Jun 19, 2008 9:24:48 PM)
or just lucky
john.e.bee (Jun 19, 2008 9:24:51 PM)
it's amazing what they are starting to do these days.. incredible stuff
anna (Jun 19, 2008 9:25:44 PM)
we all need to stay positive....
john.e.bee (Jun 19, 2008 9:25:59 PM)
that's good to hear twinglema. i still havent had time to research all the steroid options
twinglema (Jun 19, 2008 9:26:18 PM)
i remeber when that didnt seem possible but i got there!--with your help!
may (Jun 19, 2008 9:26:38 PM)
(This user has entered DMD Parent Chat)
twinglema (Jun 19, 2008 9:26:40 PM)
we started with prednisone but luke didnt tolerate ti so we use deflazacort
anna (Jun 19, 2008 9:26:44 PM)
Hi May
twinglema (Jun 19, 2008 9:26:49 PM)
hi may-long time no see!
may (Jun 19, 2008 9:27:06 PM)
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anna (Jun 19, 2008 9:27:41 PM)
hope she comes back as I wonder how her son is doing
twinglema (Jun 19, 2008 9:27:44 PM)
wonder if that was the may whose son is corey
twinglema (Jun 19, 2008 9:27:49 PM)
me too
anna (Jun 19, 2008 9:27:55 PM)
yes, I think so
john.e.bee (Jun 19, 2008 9:28:05 PM)
do you see a lot of fathers in here or am i an anomoly?
twinglema (Jun 19, 2008 9:28:11 PM)
i od not have good memory-just good notes
may (Jun 19, 2008 9:28:14 PM)
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twinglema (Jun 19, 2008 9:28:18 PM)
wb may
anna (Jun 19, 2008 9:28:28 PM)
very few dads
anna (Jun 19, 2008 9:28:34 PM)
but we have had some
momma (Jun 19, 2008 9:28:39 PM)
hi may
may (Jun 19, 2008 9:28:51 PM)
hi
anna (Jun 19, 2008 9:29:05 PM)
how is C doingnow?
may (Jun 19, 2008 9:29:37 PM)
my computer is acting crazy so slow
anna (Jun 19, 2008 9:29:53 PM)
do you have latest Java uploaded?
may (Jun 19, 2008 9:30:14 PM)
im not sure
anna (Jun 19, 2008 9:30:37 PM)
you can get it on first page of chat if you get the boot again
may (Jun 19, 2008 9:31:03 PM)
oh ok
twinglema (Jun 19, 2008 9:31:07 PM)
how are you managing on your own john?
john.e.bee (Jun 19, 2008 9:31:09 PM)
my chat client was a bit laggy starting up tonight too
twinglema (Jun 19, 2008 9:31:21 PM)
gotta get java!
anna (Jun 19, 2008 9:31:44 PM)
did someone say "Starbucks"? lol
john.e.bee (Jun 19, 2008 9:31:48 PM)
It is hard, but I have my sis-in-law who usually comes here on wed. to cook us boys some "real" food
twinglema (Jun 19, 2008 9:32:00 PM)
boy am gonna drink alot of that tomorrow
twinglema (Jun 19, 2008 9:32:13 PM)
whaer are u at john?
may (Jun 19, 2008 9:32:17 PM)
how is every one? i have been so busy
twinglema (Jun 19, 2008 9:32:19 PM)
where
twinglema (Jun 19, 2008 9:32:28 PM)
good here may how about you?
john.e.bee (Jun 19, 2008 9:32:32 PM)
east bay, ca near oakland
momma (Jun 19, 2008 9:32:36 PM)
good here
anna (Jun 19, 2008 9:32:42 PM)
May, my son is still working full-time
may (Jun 19, 2008 9:32:56 PM)
pretty good
twinglema (Jun 19, 2008 9:33:08 PM)
mine is at camp and i have to leave at 6 am to get him-thus the coffee :)
may (Jun 19, 2008 9:33:22 PM)
thats great anna
momma (Jun 19, 2008 9:33:48 PM)
are ya anxious to go get him twingle
twinglema (Jun 19, 2008 9:33:53 PM)
how old is C now may?
anna (Jun 19, 2008 9:34:00 PM)
Is C using any breathing help yet May?
twinglema (Jun 19, 2008 9:34:01 PM)
yes i am
may (Jun 19, 2008 9:34:10 PM)
corey is 21
anna (Jun 19, 2008 9:34:16 PM)
it is too quiet at her house without him
momma (Jun 19, 2008 9:34:21 PM)
i always was glad for a break but so glad to go get kent too
twinglema (Jun 19, 2008 9:34:21 PM)
though he will cry for an hour then sleep for 2 lol
anna (Jun 19, 2008 9:34:39 PM)
cry cause he loved camp?
may (Jun 19, 2008 9:34:44 PM)
no breathing problems yet
twinglema (Jun 19, 2008 9:34:57 PM)
yes it is anna-he is my noisy one
twinglema (Jun 19, 2008 9:35:09 PM)
and daughter is at friends so i only have one kid
anna (Jun 19, 2008 9:35:12 PM)
ok, breathing problems tend to creep up on our guys quite slowly
momma (Jun 19, 2008 9:35:13 PM)
thats great may
twinglema (Jun 19, 2008 9:35:23 PM)
yes he crys cuz he has to leave
twinglema (Jun 19, 2008 9:35:38 PM)
and cuz he is exhsuted though he will not admit that lol
anna (Jun 19, 2008 9:35:39 PM)
he is lucky to be 21 and not needing any help
twinglema (Jun 19, 2008 9:36:01 PM)
exhausted
twinglema (Jun 19, 2008 9:36:08 PM)
john i am bad typist
anna (Jun 19, 2008 9:36:30 PM)
but, we don't hold bad spelling/keyboarding against anyone here
john.e.bee (Jun 19, 2008 9:36:40 PM)
i get to go camping with my brother this weekend.. no kids :D delayed fathers day gift from sis in law
may (Jun 19, 2008 9:36:53 PM)
getting ready for corey to go to a program in philidelphia
twinglema (Jun 19, 2008 9:37:02 PM)
wow that will be fun (if ya like to camp-which i dont)
momma (Jun 19, 2008 9:37:10 PM)
thats cool john
twinglema (Jun 19, 2008 9:37:14 PM)
is that far form u may?
john.e.bee (Jun 19, 2008 9:37:17 PM)
i so need it
may (Jun 19, 2008 9:37:30 PM)
300 miles
twinglema (Jun 19, 2008 9:37:43 PM)
what program?
may (Jun 19, 2008 9:37:51 PM)
kind of scary
anna (Jun 19, 2008 9:37:53 PM)
independant living?
anna (Jun 19, 2008 9:38:16 PM)
probably more scary for parents than the boys
may (Jun 19, 2008 9:38:20 PM)
a community living program
may (Jun 19, 2008 9:38:38 PM)
but seei
may (Jun 19, 2008 9:39:03 PM)
sorry
anna (Jun 19, 2008 9:39:58 PM)
May, you should be very proud of your son and his quest for independence--but I know I would be upset if my son did it
may (Jun 19, 2008 9:40:21 PM)
my kyboar is not working right
anna (Jun 19, 2008 9:40:43 PM)
I honestly don't think anyone can take as good care of my son as I do-----does that make me a clingy mom?
twinglema (Jun 19, 2008 9:40:44 PM)
glad my kid is only 11-wont have to deal with that for awhile
twinglema (Jun 19, 2008 9:40:54 PM)
maybe anna lol
anna (Jun 19, 2008 9:41:01 PM)
May, maybe you could use on-screen keyboard?
twinglema (Jun 19, 2008 9:41:04 PM)
or a type a one
momma (Jun 19, 2008 9:41:11 PM)
nah i total get ya anna im the same
may (Jun 19, 2008 9:41:32 PM)
i just want him to be happy
momma (Jun 19, 2008 9:41:35 PM)
just good mothers pat pat on the back lol
may (Jun 19, 2008 9:42:05 PM)
i will try that anna
anna (Jun 19, 2008 9:42:07 PM)
yes, happiness is all I ask
twinglema (Jun 19, 2008 9:42:22 PM)
you are all good moms and dads
anna (Jun 19, 2008 9:42:24 PM)
Pats all around....
twinglema (Jun 19, 2008 9:42:43 PM)
ewww i had brother in law named pat icky
john.e.bee (Jun 19, 2008 9:42:44 PM)
you too /pat pat
john.e.bee (Jun 19, 2008 9:42:53 PM)
lol
anna (Jun 19, 2008 9:43:10 PM)
brb-R wants me to see sunset...
twinglema (Jun 19, 2008 9:43:24 PM)
not gonna see one here it is raining again
twinglema (Jun 19, 2008 9:43:37 PM)
hey we went three days with no rain-a record for june
john.e.bee (Jun 19, 2008 9:43:43 PM)
ok, now it's too quiet downstairs..lol.. brb
twinglema (Jun 19, 2008 9:43:46 PM)
fyi i am in midwest floods
may (Jun 19, 2008 9:44:03 PM)
oh no
momma (Jun 19, 2008 9:44:06 PM)
got a boat twingle
anna (Jun 19, 2008 9:44:09 PM)
the floods are awful
twinglema (Jun 19, 2008 9:44:19 PM)
last time it was too quiet hewre my kids had painted on the carpet
twinglema (Jun 19, 2008 9:44:30 PM)
no boat, but hip waders!
momma (Jun 19, 2008 9:44:38 PM)
thier ya go
anna (Jun 19, 2008 9:44:41 PM)
was it hard for your son to get into that program May?
may (Jun 19, 2008 9:45:25 PM)
no but he has been on a waiting list
kling (Jun 19, 2008 9:45:27 PM)
(This user has entered DMD Parent Chat)
twinglema (Jun 19, 2008 9:45:36 PM)
hi kling1 glad to see u
momma (Jun 19, 2008 9:45:38 PM)
hi kling
anna (Jun 19, 2008 9:45:39 PM)
Hi Kling
kling (Jun 19, 2008 9:45:44 PM)
hello everyone
may (Jun 19, 2008 9:46:05 PM)
he says he just wants a change
anna (Jun 19, 2008 9:46:36 PM)
I don't blame him
may (Jun 19, 2008 9:47:07 PM)
we couldnt find anything in massachusetts
anna (Jun 19, 2008 9:47:19 PM)
our guys have a difficult life and are tired of boundaries by age 21
anna (Jun 19, 2008 9:47:26 PM)
they want/need to FLY
may (Jun 19, 2008 9:47:53 PM)
thats true
anna (Jun 19, 2008 9:47:56 PM)
of course, when my son flies I go with him (coach)
anna (Jun 19, 2008 9:48:23 PM)
what young man doesn't want his mom to go to college with him, huh?
twinglema (Jun 19, 2008 9:48:26 PM)
ahh the good old days when if u used a wc u got bumped up to first class
twinglema (Jun 19, 2008 9:48:33 PM)
lol at anna
anna (Jun 19, 2008 9:49:23 PM)
travel with a power chair is not easy! air travel I mean
twinglema (Jun 19, 2008 9:49:30 PM)
no it isnat
may (Jun 19, 2008 9:49:49 PM)
can wheelchair users stay in thier own chairs on the plane
anna (Jun 19, 2008 9:49:52 PM)
now, how would we fly with R needing breathing devices?
twinglema (Jun 19, 2008 9:49:58 PM)
bruce hates to let "the gorillas" man ahndle his chair
twinglema (Jun 19, 2008 9:50:13 PM)
i think they lewt you anna
anna (Jun 19, 2008 9:50:21 PM)
they are trying to get airlines to let people travel in their chairs
twinglema (Jun 19, 2008 9:50:37 PM)
that would be cool-would just need lock downs
twinglema (Jun 19, 2008 9:50:51 PM)
no more aisle chairs
anna (Jun 19, 2008 9:50:58 PM)
airlines are probably worried about being sued
may (Jun 19, 2008 9:51:03 PM)
that would be so much easier
twinglema (Jun 19, 2008 9:51:06 PM)
we actually saw them drop hubbys chair once
twinglema (Jun 19, 2008 9:51:30 PM)
now i put notes all over it
anna (Jun 19, 2008 9:51:40 PM)
we flew to DC with R's power chair
twinglema (Jun 19, 2008 9:52:17 PM)
we have flown to orlando, st lois, minneapolis with it
may (Jun 19, 2008 9:52:17 PM)
good idea twingle
anna (Jun 19, 2008 9:52:28 PM)
it was before 9/11 so they let my hubby down on the ground to supervise the loading of it
twinglema (Jun 19, 2008 9:52:50 PM)
i watch out the window as we always sit in bulkhead
john.e.bee (Jun 19, 2008 9:53:02 PM)
twinglema, your husband is in wheelchair too?
twinglema (Jun 19, 2008 9:53:22 PM)
yes he had diving accident when he was 14 and is a quadriplegic
twinglema (Jun 19, 2008 9:53:39 PM)
son is not in wc yet except for disney world etc
twinglema (Jun 19, 2008 9:53:59 PM)
he works full time too-good thing cuz i saty at home lol
twinglema (Jun 19, 2008 9:54:20 PM)
when we told luke about dmd he asked if he could get a wc like daddys
anna (Jun 19, 2008 9:54:34 PM)
ahhh
twinglema (Jun 19, 2008 9:54:52 PM)
they plan to have drag races in our driveway
john.e.bee (Jun 19, 2008 9:54:53 PM)
how old was he when you told him?
may (Jun 19, 2008 9:55:00 PM)
how old is your son john?
john.e.bee (Jun 19, 2008 9:55:07 PM)
just turned 6
twinglema (Jun 19, 2008 9:55:08 PM)
right after he was dx'd when he was 8
twinglema (Jun 19, 2008 9:55:25 PM)
we just tell him whatever he asks about
twinglema (Jun 19, 2008 9:55:50 PM)
he was actually glad to know cuz he finally had a reason why he was slower
twinglema (Jun 19, 2008 9:56:10 PM)
he know something was up w/ all the dr appts
twinglema (Jun 19, 2008 9:56:34 PM)
john, mda has some good booklets for little kids and for theri siblings
anna (Jun 19, 2008 9:56:38 PM)
yes, they catch on quick
john.e.bee (Jun 19, 2008 9:56:52 PM)
i got carried away yesterday and told him there may be a drug to make his legs stronger...first time ive made a connection between his weak legs/feet and medicine
anna (Jun 19, 2008 9:56:55 PM)
may as well be honest from the start
twinglema (Jun 19, 2008 9:56:58 PM)
and he goes to camp
may (Jun 19, 2008 9:57:03 PM)
they sure do
twinglema (Jun 19, 2008 9:57:20 PM)
he can go to camp as early as age 6 john
john.e.bee (Jun 19, 2008 9:57:37 PM)
i probably shouldn't have said anything but I was excited
twinglema (Jun 19, 2008 9:57:49 PM)
there is nothing wrong with that john
anna (Jun 19, 2008 9:57:52 PM)
the best thing about camp is they learn they are not the only ones with md
twinglema (Jun 19, 2008 9:58:04 PM)
i tell luke he takes a heart med to keep his heart strong
john.e.bee (Jun 19, 2008 9:58:20 PM)
im afraid it would scare him to see others further progressed...no?
twinglema (Jun 19, 2008 9:58:24 PM)
and it levels the playing field-they are not the slowest there
twinglema (Jun 19, 2008 9:58:51 PM)
it never did scare luke. they are amzing with waht they will aceept
anna (Jun 19, 2008 9:58:52 PM)
no, they learn that others can cope and so can they
john.e.bee (Jun 19, 2008 9:59:03 PM)
actually, I looked up the camps but can't seem to find WHERE they are at.. lol
twinglema (Jun 19, 2008 9:59:04 PM)
plus they have so much fun i dont think they really think about it
momma (Jun 19, 2008 9:59:15 PM)
if nhe goes to camp a good time to see others at differant stages and having fun
twinglema (Jun 19, 2008 9:59:29 PM)
call your local mda office and they will telll you
john.e.bee (Jun 19, 2008 9:59:39 PM)
ok thanks
twinglema (Jun 19, 2008 10:00:09 PM)
lukes is four hours away-up on a bluff and they still had water damage
twinglema (Jun 19, 2008 10:00:22 PM)
could not stay in cabin as sidewalk washed out
john.e.bee (Jun 19, 2008 10:00:40 PM)
you know, i still havent called the local mda office.. there are 3. it's only been a week since his dna results showed positive but I should have made contact by now.. im so flaky
twinglema (Jun 19, 2008 10:00:52 PM)
take you time
twinglema (Jun 19, 2008 10:00:58 PM)
i called ppmd first
anna (Jun 19, 2008 10:01:00 PM)
it all takes some time to process
twinglema (Jun 19, 2008 10:01:21 PM)
have you been to the mda clinic yet?
john.e.bee (Jun 19, 2008 10:01:29 PM)
nope
john.e.bee (Jun 19, 2008 10:01:42 PM)
just the neurologist
twinglema (Jun 19, 2008 10:01:45 PM)
that is where we did out dna tests
twinglema (Jun 19, 2008 10:01:52 PM)
our
anna (Jun 19, 2008 10:02:07 PM)
it is like in a flying emergency the parent should put on their mask first--in the same way parents need to recover a bit from the dx so they can be strong and set good example for their kids
john.e.bee (Jun 19, 2008 10:02:08 PM)
my neurologist ordered the test
twinglema (Jun 19, 2008 10:02:24 PM)
it is good to contact them and use clinic as they will pay for what insurance does not
john.e.bee (Jun 19, 2008 10:02:35 PM)
thanks anna.. makes sense
twinglema (Jun 19, 2008 10:02:41 PM)
gee, anna is so smart
anna (Jun 19, 2008 10:03:04 PM)
or at least older if not wiser lol
twinglema (Jun 19, 2008 10:03:05 PM)
we were so strong until we took luke back to school
john.e.bee (Jun 19, 2008 10:03:06 PM)
i have kaiser so everything is internal
twinglema (Jun 19, 2008 10:03:14 PM)
?
twinglema (Jun 19, 2008 10:03:41 PM)
i spent alot of time in my car screaming at god
anna (Jun 19, 2008 10:04:00 PM)
and I slammed a lot of doors
twinglema (Jun 19, 2008 10:04:05 PM)
not much older lol
twinglema (Jun 19, 2008 10:04:40 PM)
what is kaiser john
anna (Jun 19, 2008 10:04:45 PM)
medical
john.e.bee (Jun 19, 2008 10:04:50 PM)
insurance/medical
twinglema (Jun 19, 2008 10:05:11 PM)
ah
john.e.bee (Jun 19, 2008 10:05:13 PM)
closed system unless it's an emergency
john.e.bee (Jun 19, 2008 10:05:23 PM)
have to see kaiser doctors
twinglema (Jun 19, 2008 10:05:39 PM)
clinic is nice cuz u see all at once
anna (Jun 19, 2008 10:05:39 PM)
when our guys are 18 they can go on Medicaid as parents' income cannot be counted then
twinglema (Jun 19, 2008 10:05:54 PM)
or can get medicaid waiver
john.e.bee (Jun 19, 2008 10:06:07 PM)
oh, that is nice
john.e.bee (Jun 19, 2008 10:06:25 PM)
have any of you been in clinical trials before?
twinglema (Jun 19, 2008 10:06:33 PM)
i would call mda and ask if you can go to clinic
twinglema (Jun 19, 2008 10:06:44 PM)
not us
may (Jun 19, 2008 10:06:46 PM)
no
kling (Jun 19, 2008 10:07:09 PM)
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twinglema (Jun 19, 2008 10:07:19 PM)
bye kling :(
anna (Jun 19, 2008 10:07:24 PM)
We are in one from UW?UCLA DAvis about quality of life on a NIV
john.e.bee (Jun 19, 2008 10:07:47 PM)
NIV is the breathing device?
anna (Jun 19, 2008 10:07:52 PM)
but no meds involved
twinglema (Jun 19, 2008 10:07:55 PM)
u should be in one about being super mom
anna (Jun 19, 2008 10:08:03 PM)
yes, non-invasive venting
john.e.bee (Jun 19, 2008 10:08:36 PM)
ahh.. liam will be going to UC Davis if he gets into this trial. Very close to me.
anna (Jun 19, 2008 10:08:37 PM)
ty Twingle--but we all have to act as Mother Bears, or Father Bears in John's case
john.e.bee (Jun 19, 2008 10:08:54 PM)
=)
anna (Jun 19, 2008 10:09:04 PM)
yes, I put too many initials there lol
anna (Jun 19, 2008 10:09:41 PM)
we go to UW in Seattle. but the study is from UC Davis
john.e.bee (Jun 19, 2008 10:10:07 PM)
Oh, i was just going to ask if you ever came out this way
anna (Jun 19, 2008 10:10:35 PM)
one of the other moms who chat goes there too (California)
john.e.bee (Jun 19, 2008 10:10:45 PM)
how often do you travel to washington?
anna (Jun 19, 2008 10:11:04 PM)
we live in Seattle area
anna (Jun 19, 2008 10:11:17 PM)
near ms
twinglema (Jun 19, 2008 10:11:44 PM)
her son is one of those brilliant computer geeks
anna (Jun 19, 2008 10:12:05 PM)
I already bragged about R to John--but you can too!
john.e.bee (Jun 19, 2008 10:12:22 PM)
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twinglema (Jun 19, 2008 10:12:28 PM)
it sounds moire sincere coming from me lol
anna (Jun 19, 2008 10:12:37 PM)
!
twinglema (Jun 19, 2008 10:12:41 PM)
whaer is johns wife?
twinglema (Jun 19, 2008 10:13:09 PM)
i know, i am nosy
may (Jun 19, 2008 10:13:27 PM)
you and your son are truley amazing anna
twinglema (Jun 19, 2008 10:14:27 PM)
i think we all are amzing
anna (Jun 19, 2008 10:14:36 PM)
well May, I know you are too! all of us are because we HAVE to
twinglema (Jun 19, 2008 10:15:15 PM)
i am also manifestiong carrier
twinglema (Jun 19, 2008 10:15:32 PM)
who cannot spell worth a dang
may (Jun 19, 2008 10:15:34 PM)
that is true twingle
anna (Jun 19, 2008 10:15:40 PM)
I don't seem to be manifesting much, but have always been a bit weak
twinglema (Jun 19, 2008 10:15:52 PM)
i hurt all over all the time
twinglema (Jun 19, 2008 10:15:59 PM)
and run a hi cpk
anna (Jun 19, 2008 10:16:06 PM)
maybe you have fibromyalgia?
twinglema (Jun 19, 2008 10:16:18 PM)
went to mayo and they said no
john.e.bee (Jun 19, 2008 10:16:20 PM)
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twinglema (Jun 19, 2008 10:16:24 PM)
wb john
john.e.bee (Jun 19, 2008 10:16:51 PM)
ty lol. i guess having my cable modem power tied to the light switch is a bad idea
twinglema (Jun 19, 2008 10:16:56 PM)
thought i did for a long time until luke was dw'd
twinglema (Jun 19, 2008 10:17:02 PM)
dx'd
john.e.bee (Jun 19, 2008 10:17:11 PM)
3 year old aiden thought he was pretty funny
twinglema (Jun 19, 2008 10:17:14 PM)
LOL
twinglema (Jun 19, 2008 10:17:28 PM)
i think he is pretty funny
twinglema (Jun 19, 2008 10:17:54 PM)
sounds like something i would do
anna (Jun 19, 2008 10:18:03 PM)
seems the minute we get on phone/computer/toilet someone wants our attention
john.e.bee (Jun 19, 2008 10:18:17 PM)
haha. so true
twinglema (Jun 19, 2008 10:18:35 PM)
first time i locked the br door i had 3 sets of hands under the door panicking cuz the door was broke
anna (Jun 19, 2008 10:19:00 PM)
privacy goes out the window
twinglema (Jun 19, 2008 10:19:10 PM)
good thing i was in the br as i was laughing so hard!
twinglema (Jun 19, 2008 10:19:32 PM)
now that they use the phone i make it a point to interrupt them
john.e.bee (Jun 19, 2008 10:19:34 PM)
well, i hopped back on to say goodnight.. i need to pack the car for my trip and get to my bro's house. it was really nice talking to you all.
twinglema (Jun 19, 2008 10:19:43 PM)
have fun john
twinglema (Jun 19, 2008 10:19:45 PM)
take care
anna (Jun 19, 2008 10:19:46 PM)
have fun camping
anna (Jun 19, 2008 10:19:50 PM)
goodnight
may (Jun 19, 2008 10:19:59 PM)
bye john
twinglema (Jun 19, 2008 10:20:04 PM)
momma are u still here?
john.e.bee (Jun 19, 2008 10:20:14 PM)
i will.. take care all and big hugs to your kids!
john.e.bee (Jun 19, 2008 10:20:23 PM)
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twinglema (Jun 19, 2008 10:20:28 PM)
her and may are prob pm-ing
twinglema (Jun 19, 2008 10:20:47 PM)
i would hate to have to do this by myself
anna (Jun 19, 2008 10:21:04 PM)
it would be harder
may (Jun 19, 2008 10:21:20 PM)
still having typing issues
twinglema (Jun 19, 2008 10:21:22 PM)
though you kinda do it anna
anna (Jun 19, 2008 10:21:23 PM)
as I know from experience of not living with hubby
anna (Jun 19, 2008 10:21:46 PM)
I hope to get a shower aide soon
twinglema (Jun 19, 2008 10:21:46 PM)
sorry may
twinglema (Jun 19, 2008 10:22:04 PM)
you will have to download java cuz without it chat does weird things
may (Jun 19, 2008 10:22:08 PM)
thanks wingl
twinglema (Jun 19, 2008 10:22:23 PM)
i hope you so too anna
may (Jun 19, 2008 10:22:24 PM)
sorry twingle
twinglema (Jun 19, 2008 10:22:33 PM)
i liked wingle!
may (Jun 19, 2008 10:22:45 PM)
lol
twinglema (Jun 19, 2008 10:24:01 PM)
when does c go to philly?
anna (Jun 19, 2008 10:24:02 PM)
I am going to go help R for awhile. bbl. afk. and all those other initials
twinglema (Jun 19, 2008 10:24:13 PM)
what if afk?
twinglema (Jun 19, 2008 10:24:15 PM)
lol
anna (Jun 19, 2008 10:24:23 PM)
away from keyboard
may (Jun 19, 2008 10:24:35 PM)
next month
twinglema (Jun 19, 2008 10:24:38 PM)
i am going to sign off at ten so can get seven hours before i drive
twinglema (Jun 19, 2008 10:24:50 PM)
how long will he be gone?
may (Jun 19, 2008 10:25:20 PM)
this will be his new home
twinglema (Jun 19, 2008 10:26:06 PM)
oh my
twinglema (Jun 19, 2008 10:26:15 PM)
that would be hard
twinglema (Jun 19, 2008 10:26:18 PM)
u ok?
may (Jun 19, 2008 10:26:19 PM)
we are thinking of moving from ma to be closer to him
twinglema (Jun 19, 2008 10:26:37 PM)
would it be hard to move job wise etc?
may (Jun 19, 2008 10:27:12 PM)
i have my eye on a farm house in pa
twinglema (Jun 19, 2008 10:27:24 PM)
i would like a small farm house
twinglema (Jun 19, 2008 10:27:35 PM)
well not small house but on small amt of land
may (Jun 19, 2008 10:28:33 PM)
my husband is self employed contractor
twinglema (Jun 19, 2008 10:28:57 PM)
well that would work
twinglema (Jun 19, 2008 10:29:04 PM)
does c work?
twinglema (Jun 19, 2008 10:29:23 PM)
bet he is excited to leave the nest
may (Jun 19, 2008 10:29:29 PM)
i would really like some animals
twinglema (Jun 19, 2008 10:29:52 PM)
well, we have two guinea pigs, one dog, and 3 kids...
may (Jun 19, 2008 10:30:08 PM)
corey workes part time at hospital
twinglema (Jun 19, 2008 10:30:10 PM)
chickens so u could have fresh eggs
twinglema (Jun 19, 2008 10:30:29 PM)
will he be able to do that when he moves?
may (Jun 19, 2008 10:30:37 PM)
that would be nice
twinglema (Jun 19, 2008 10:31:06 PM)
i can picture myself in my apron feeding chickens
may (Jun 19, 2008 10:31:20 PM)
they help him to find employment
twinglema (Jun 19, 2008 10:31:34 PM)
what an awesome oppurtunity for him
twinglema (Jun 19, 2008 10:31:44 PM)
so somone is there to provide care/
twinglema (Jun 19, 2008 10:31:48 PM)
?
may (Jun 19, 2008 10:31:58 PM)
yes it really is
may (Jun 19, 2008 10:32:16 PM)
24 hour care
twinglema (Jun 19, 2008 10:32:29 PM)
hard for you though
twinglema (Jun 19, 2008 10:32:37 PM)
do you have other kids at home?
may (Jun 19, 2008 10:32:44 PM)
sorry im typing so slow
twinglema (Jun 19, 2008 10:32:50 PM)
no problem
twinglema (Jun 19, 2008 10:33:01 PM)
if i slowed down my accuracy would improve
may (Jun 19, 2008 10:33:16 PM)
yes another son 18
twinglema (Jun 19, 2008 10:33:30 PM)
he doesnt have dmd right?
may (Jun 19, 2008 10:33:48 PM)
right
twinglema (Jun 19, 2008 10:34:03 PM)
computer slow you down typing?
may (Jun 19, 2008 10:34:15 PM)
yes
twinglema (Jun 19, 2008 10:34:52 PM)
big changes for your family this summer
momma (Jun 19, 2008 10:35:02 PM)
back for a bit
twinglema (Jun 19, 2008 10:35:07 PM)
wb momma
may (Jun 19, 2008 10:35:36 PM)
brb corey is calling
twinglema (Jun 19, 2008 10:35:41 PM)
k may
momma (Jun 19, 2008 10:35:48 PM)
ty
momma (Jun 19, 2008 10:36:01 PM)
getting kent ready for bed
momma (Jun 19, 2008 10:38:59 PM)
i discovered they put wrong size sp cath today
Sunny (Jun 19, 2008 10:39:00 PM)
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Sunny (Jun 19, 2008 10:39:07 PM)
hi :), hw's evryone
twinglema (Jun 19, 2008 10:39:08 PM)
i am trying to get hubby to go to bed so i can go early
twinglema (Jun 19, 2008 10:39:13 PM)
hi sunny
kling (Jun 19, 2008 10:39:15 PM)
(This user has entered DMD Parent Chat)
momma (Jun 19, 2008 10:39:16 PM)
hi sunny
twinglema (Jun 19, 2008 10:39:21 PM)
wb kling
momma (Jun 19, 2008 10:39:31 PM)
wb kling
Sunny (Jun 19, 2008 10:39:37 PM)
i'll b bk in 5 mins.
kling (Jun 19, 2008 10:39:40 PM)
thanks. my internet disconnected!
momma (Jun 19, 2008 10:39:45 PM)
oh no
kling (Jun 19, 2008 10:40:05 PM)
how is everyone tonight?
twinglema (Jun 19, 2008 10:40:19 PM)
mine might-lightening kicking in
anna (Jun 19, 2008 10:40:30 PM)
wrong size Momma?
momma (Jun 19, 2008 10:40:34 PM)
yea
kling (Jun 19, 2008 10:40:35 PM)
pretty calm here tonight
anna (Jun 19, 2008 10:40:50 PM)
what should they have done? can they easily change it?
momma (Jun 19, 2008 10:41:14 PM)
well i had nurse come flush it cause it was draining slow
momma (Jun 19, 2008 10:42:36 PM)
so she came didnt seamed to plugged but hubby and i both thought it looked smaller sure enough it was 14 not 16
momma (Jun 19, 2008 10:42:44 PM)
bb in a few
kling (Jun 19, 2008 10:43:32 PM)
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twinglema (Jun 19, 2008 10:44:02 PM)
rats she got kicked
anna (Jun 19, 2008 10:44:17 PM)
speaking of rats----
anna (Jun 19, 2008 10:44:51 PM)
I was in a Geico ad about the squirrel, then on next corner a cat was chasing rat in middle of road
twinglema (Jun 19, 2008 10:45:27 PM)
really i did noy see that
anna (Jun 19, 2008 10:45:33 PM)
I stopped and cat ran one way, rat went other way
anna (Jun 19, 2008 10:45:54 PM)
squirrel stands in middle of road--car runs off road
Sunny (Jun 19, 2008 10:46:00 PM)
m back.
Sunny (Jun 19, 2008 10:46:33 PM)
needed to change th cushion n put on sox
anna (Jun 19, 2008 10:46:47 PM)
Hi Sunny
twinglema (Jun 19, 2008 10:47:04 PM)
wb sunny
twinglema (Jun 19, 2008 10:47:14 PM)
funny anna
Sunny (Jun 19, 2008 10:47:27 PM)
ty
anna (Jun 19, 2008 10:48:18 PM)
so, I saved the life of a rat
Sunny (Jun 19, 2008 10:48:21 PM)
hi anna, twinglema, may , momma
twinglema (Jun 19, 2008 10:48:28 PM)
lightening is getting bad so i am going to go
anna (Jun 19, 2008 10:48:36 PM)
ok, drive safe tomorrow
Sunny (Jun 19, 2008 10:48:40 PM)
oh, ok
anna (Jun 19, 2008 10:48:48 PM)
I really have to go help R more
Sunny (Jun 19, 2008 10:48:56 PM)
g nt n t/c
twinglema (Jun 19, 2008 10:49:04 PM)
will see ya all soon
twinglema (Jun 19, 2008 10:49:09 PM)
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Sunny (Jun 19, 2008 10:49:15 PM)
anna
Sunny (Jun 19, 2008 10:49:24 PM)
u going too
Sunny (Jun 19, 2008 10:49:29 PM)
?
anna (Jun 19, 2008 10:50:37 PM)
sorry, am helping son eat while I chat
anna (Jun 19, 2008 10:51:26 PM)
warm in India?
anna (Jun 19, 2008 10:54:18 PM)
well, I will go too then. goodnight to anyone who sees this.
anna (Jun 19, 2008 10:54:34 PM)
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may (Jun 19, 2008 10:54:42 PM)
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Sunny (Jun 19, 2008 10:55:11 PM)
momma, u there?
Sunny (Jun 19, 2008 10:55:43 PM)
good night momma :)
Sunny (Jun 19, 2008 10:55:56 PM)
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momma (Jun 19, 2008 11:03:31 PM)
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