Parents of Young Adults with DMD
anna (Mar 10, 2010 7:43:54 PM)
jmn1108 (Mar 10, 2010 7:51:57 PM)
(This user has entered Parents of Young Adults with DMD)
anna (Mar 10, 2010 7:52:21 PM)
Hi Jean!
anna (Mar 10, 2010 7:52:32 PM)
wb, how are you all doing?
jmn1108 (Mar 10, 2010 7:52:39 PM)
Hi Anna! how are you and R and family?
jmn1108 (Mar 10, 2010 7:53:06 PM)
doing ok, all things considered
anna (Mar 10, 2010 7:53:36 PM)
we are ok, how much doe you know about us now? have we talked in last year or so?
jmn1108 (Mar 10, 2010 7:54:16 PM)
not much but R got a job but I did not know how that turned out
anna (Mar 10, 2010 7:54:53 PM)
he has had 2 contracts at Microsoft and will start 3rd next month
jmn1108 (Mar 10, 2010 7:55:06 PM)
wow thats great!
anna (Mar 10, 2010 7:55:15 PM)
your guys?
jmn1108 (Mar 10, 2010 7:55:25 PM)
he had a helper at work if i remember
anna (Mar 10, 2010 7:55:57 PM)
for 3 hours a day--mostly to feed him lunch
anna (Mar 10, 2010 7:56:13 PM)
then he is on his own
jmn1108 (Mar 10, 2010 7:56:31 PM)
same old stuff, no jobs still at home, still taking care of themselves(sort of) but my younger son matt had CHF in Feb
jmn1108 (Mar 10, 2010 7:56:43 PM)
sounds great for him
anna (Mar 10, 2010 7:56:59 PM)
on different meds now since the CHF?
jmn1108 (Mar 10, 2010 7:57:13 PM)
meds for the first time ever
jmn1108 (Mar 10, 2010 7:57:35 PM)
CHF, first time either has anything major
anna (Mar 10, 2010 7:57:48 PM)
how old are C and M now?
jmn1108 (Mar 10, 2010 7:58:24 PM)
29 & 30 in april
anna (Mar 10, 2010 7:58:27 PM)
R has a feeding tube now, but still eats by mouth
anna (Mar 10, 2010 7:58:39 PM)
are they on NIV yet?
anna (Mar 10, 2010 7:58:45 PM)
R is 29
jmn1108 (Mar 10, 2010 7:58:47 PM)
at least he still can taste some food
jmn1108 (Mar 10, 2010 7:59:05 PM)
don't no what NIV is so that would be a no
anna (Mar 10, 2010 7:59:19 PM)
we mostly use the tube for hydration
jmn1108 (Mar 10, 2010 7:59:46 PM)
ahhh, where as matt now needs to limit his hydration
anna (Mar 10, 2010 7:59:52 PM)
non-invasive venting. lots of pics on my PPMD page
jmn1108 (Mar 10, 2010 8:00:13 PM)
what is the address of that page?
anna (Mar 10, 2010 8:00:43 PM)
heart not pumping well enough to clear lungs
jmn1108 (Mar 10, 2010 8:01:18 PM)
they put m on oxygen in the hospital but stopped after the first few hours because they deemed it as not needed
jmn1108 (Mar 10, 2010 8:01:47 PM)
i guess that's what they think however
anna (Mar 10, 2010 8:02:19 PM)
will pm you that info now
jmn1108 (Mar 10, 2010 8:02:24 PM)
they say it is not a consequence of dmd rather a viral cause
anna (Mar 10, 2010 8:02:31 PM)
no no no for oxygen!!!
jmn1108 (Mar 10, 2010 8:03:03 PM)
why no oxygen?
anna (Mar 10, 2010 8:03:09 PM)
guess it is time for you all to research dmd and breathing issues
jmn1108 (Mar 10, 2010 8:03:25 PM)
the dr ordered it off like two hours after admission
jmn1108 (Mar 10, 2010 8:03:39 PM)
i suppose it is
anna (Mar 10, 2010 8:04:01 PM)
our guys at a certain age cannot breath in or OUT well enough for normal exchange of gases. CO2 builds up and signals brain not to breathe
jmn1108 (Mar 10, 2010 8:04:11 PM)
been kind of in a wierd state of not knowing lately
jmn1108 (Mar 10, 2010 8:04:28 PM)
i see
anna (Mar 10, 2010 8:04:36 PM)
well, my page has references you can read
anna (Mar 10, 2010 8:05:30 PM)
many a dmd guy has been harmed by docs who order oxygen---some have died
jmn1108 (Mar 10, 2010 8:05:31 PM)
that will be helpful, every time i go to the cardiologist he has to remind me about it being a different problem than DMD would cause
anna (Mar 10, 2010 8:06:13 PM)
well, most of our guys have left ventricular hypertrophy which can lead to CHF
momma (Mar 10, 2010 8:06:27 PM)
(This user has entered Parents of Young Adults with DMD)
jmn1108 (Mar 10, 2010 8:06:27 PM)
wow, good to know, probably why the dr took it off after the floor nurses put it on,
anna (Mar 10, 2010 8:06:56 PM)
Hi Momma---guess who is back? Jmn
momma (Mar 10, 2010 8:07:17 PM)
well goodevening all
jmn1108 (Mar 10, 2010 8:07:20 PM)
i wish i could remember what he said was the cause
anna (Mar 10, 2010 8:07:22 PM)
Momma's son just had a birthday
jmn1108 (Mar 10, 2010 8:07:23 PM)
hi momma
jmn1108 (Mar 10, 2010 8:07:37 PM)
happy birhday!
momma (Mar 10, 2010 8:07:41 PM)
no not till 27th
jmn1108 (Mar 10, 2010 8:07:52 PM)
well happy early BD!!
momma (Mar 10, 2010 8:07:59 PM)
ty early :)
jmn1108 (Mar 10, 2010 8:08:06 PM)
every bd is a celebration
anna (Mar 10, 2010 8:08:10 PM)
birthday boy---soon
anna (Mar 10, 2010 8:08:18 PM)
yes it is
momma (Mar 10, 2010 8:08:24 PM)
yes
anna (Mar 10, 2010 8:09:09 PM)
I was telling J that parents have to be educated about dmd as some docs are not tuned in and order oxygen and so on
anna (Mar 10, 2010 8:09:46 PM)
J, your guys use bi-pap at night yet?
momma (Mar 10, 2010 8:09:58 PM)
oh hey we won the jugement to get a second vent !!!!!
momma (Mar 10, 2010 8:10:17 PM)
thank goodness angela went with me
anna (Mar 10, 2010 8:10:22 PM)
yay Momma
momma (Mar 10, 2010 8:10:54 PM)
sorry didnt mean to jump in like that go ahead j
anna (Mar 10, 2010 8:10:55 PM)
ok Momma--you might want to get involved in the PPMD discussion under "technology" about NIV
jmn1108 (Mar 10, 2010 8:11:05 PM)
no bpap or anything
momma (Mar 10, 2010 8:11:08 PM)
oh?
anna (Mar 10, 2010 8:11:18 PM)
wow, they are amazing!
momma (Mar 10, 2010 8:11:29 PM)
how old is your son? i forgott
jmn1108 (Mar 10, 2010 8:11:47 PM)
29 & 30 in april
anna (Mar 10, 2010 8:11:57 PM)
remember, they are the not typical dmd guys
momma (Mar 10, 2010 8:12:00 PM)
wow
jmn1108 (Mar 10, 2010 8:12:07 PM)
no they are not
momma (Mar 10, 2010 8:12:12 PM)
yes now i do :)
anna (Mar 10, 2010 8:12:41 PM)
I was hoping your guys could find work J
anna (Mar 10, 2010 8:12:54 PM)
both went to college
jmn1108 (Mar 10, 2010 8:13:04 PM)
which always makes me second guess drs and their treatments because I tend to think the worst
anna (Mar 10, 2010 8:13:20 PM)
good to second guess
anna (Mar 10, 2010 8:13:50 PM)
you have to do your research
momma (Mar 10, 2010 8:13:55 PM)
yes amen to that anna
jmn1108 (Mar 10, 2010 8:14:18 PM)
i wish they could BUT since m's CHF and he is no longer sleeping during the day and gaming all night, i may start bringing him to school with me to read with my students
anna (Mar 10, 2010 8:14:48 PM)
sounds like a great idea
jmn1108 (Mar 10, 2010 8:14:58 PM)
and maybe convince him to try and get a job in something different than computers
momma (Mar 10, 2010 8:15:22 PM)
it would be good for your students as well
anna (Mar 10, 2010 8:15:46 PM)
although computer technology makes it easier for our guys--son uses HeadMouse to compute
jmn1108 (Mar 10, 2010 8:15:54 PM)
yeah, he did that a few years back but quick because he suddenly thought they were icky
anna (Mar 10, 2010 8:16:24 PM)
computers icky--don't tell my son!
jmn1108 (Mar 10, 2010 8:16:43 PM)
NO little kids ICKY
anna (Mar 10, 2010 8:16:54 PM)
OH!! lol
jmn1108 (Mar 10, 2010 8:16:59 PM)
some days I totally agree with him
anna (Mar 10, 2010 8:17:25 PM)
they do tend to be germy
jmn1108 (Mar 10, 2010 8:17:59 PM)
yeah they are and I think they lick everything too, esp my 1st graders!
momma (Mar 10, 2010 8:18:00 PM)
i love little one but someone elses ;)
anna (Mar 10, 2010 8:18:33 PM)
my grand daughter is 5 now
momma (Mar 10, 2010 8:18:39 PM)
llove them and send them home!
jmn1108 (Mar 10, 2010 8:18:42 PM)
oh so do I, i actually thought I would have to quit my job and my heart was so torn
matt-p (Mar 10, 2010 8:19:07 PM)
(This user has entered Parents of Young Adults with DMD
jmn1108 (Mar 10, 2010 8:19:08 PM)
wow, anna time sure flies, any other grand babies planned?
momma (Mar 10, 2010 8:19:20 PM)
hi matt
anna (Mar 10, 2010 8:19:20 PM)
no, this is it
matt-p (Mar 10, 2010 8:19:24 PM)
hey all
anna (Mar 10, 2010 8:19:26 PM)
Hi Matt
matt-p (Mar 10, 2010 8:19:37 PM)
hope all is well
anna (Mar 10, 2010 8:19:39 PM)
daughter is carrier
anna (Mar 10, 2010 8:19:56 PM)
no more BIG deliveries for me today Matt
matt-p (Mar 10, 2010 8:20:03 PM)
lol
matt-p (Mar 10, 2010 8:20:18 PM)
what a goof up that was
jmn1108 (Mar 10, 2010 8:20:35 PM)
for obvious reasons, i remember that about her did grand daughter test as a carrier or did she successfully miss out on the bad genes?
anna (Mar 10, 2010 8:20:39 PM)
our aide is coming to shower R, but he will be in WC Gang for a short time
matt-p (Mar 10, 2010 8:21:26 PM)
spent a lot of time outside to day it was so nice
sweetheaven (Mar 10, 2010 8:21:29 PM)
(This user has entered Parents of Young Adults with DMD)
anna (Mar 10, 2010 8:21:33 PM)
we don't know about if gd is a carrier yet--once insurance co found out it was a girl they stopped any further tests. she will be tested eventually
momma (Mar 10, 2010 8:21:34 PM)
have fun with the shower kent cant have one this week
matt-p (Mar 10, 2010 8:21:39 PM)
hey sweet
anna (Mar 10, 2010 8:21:40 PM)
Hi Sweet
momma (Mar 10, 2010 8:21:46 PM)
hi sweet
sweetheaven (Mar 10, 2010 8:21:53 PM)
hello everyone
jmn1108 (Mar 10, 2010 8:22:29 PM)
probably a bit early to worry about it except for the possible heart issues of a carrier
anna (Mar 10, 2010 8:22:33 PM)
when will new shower be done?
momma (Mar 10, 2010 8:22:57 PM)
they madebig progress today hope done by weeks end
sweetheaven (Mar 10, 2010 8:23:08 PM)
(This user has moved to Living with ALS)
anna (Mar 10, 2010 8:23:13 PM)
my daughter did plan IVF with cell selection as you recll. but, plans don't always go right do they?
jmn1108 (Mar 10, 2010 8:23:15 PM)
remodeling momma?
matt-p (Mar 10, 2010 8:23:18 PM)
great
momma (Mar 10, 2010 8:23:20 PM)
yes
jmn1108 (Mar 10, 2010 8:23:47 PM)
I do remember that anna, still dealing with that same issue with my daugher
momma (Mar 10, 2010 8:23:55 PM)
new roll in tile shower
anna (Mar 10, 2010 8:24:02 PM)
did she get married?
anna (Mar 10, 2010 8:24:35 PM)
when they did our roll in I came home and it had a lip on it! they had to re-do
jmn1108 (Mar 10, 2010 8:24:38 PM)
wow, you will love it! we had one installed 15 years ago to prepare for our boys future needs
momma (Mar 10, 2010 8:25:01 PM)
this one is all level no lip here
anna (Mar 10, 2010 8:25:13 PM)
here, we use the bath tub with a chair that slides over it
matt-p (Mar 10, 2010 8:25:20 PM)
jmn how old are your boys
jmn1108 (Mar 10, 2010 8:25:37 PM)
no she did not get married, broke up with her long time boyfriend for her own personal reasons and refuses to get into another close relationship
anna (Mar 10, 2010 8:25:50 PM)
at university our roll in tile was purple
matt-p (Mar 10, 2010 8:26:11 PM)
i like purple
jmn1108 (Mar 10, 2010 8:26:14 PM)
purple is cool! haha
momma (Mar 10, 2010 8:26:15 PM)
oh boy our is shade of tan light brown
matt-p (Mar 10, 2010 8:26:21 PM)
my chair is purple
anna (Mar 10, 2010 8:26:29 PM)
she will when it is time, and be taken by surprise too I bet
jmn1108 (Mar 10, 2010 8:26:29 PM)
my sons are 29 & 30 in april
matt-p (Mar 10, 2010 8:26:44 PM)
neat
matt-p (Mar 10, 2010 8:26:51 PM)
are they doing well
anna (Mar 10, 2010 8:27:16 PM)
too bad we cannot scroll back like we could on old chat
jmn1108 (Mar 10, 2010 8:27:17 PM)
probably, but i doubt any plans for her future will change because she continues to close open doors
anna (Mar 10, 2010 8:28:06 PM)
that is why I thought it would be a surprise to her I guess--it is hard to manage a relationship with dmd lurking
matt-p (Mar 10, 2010 8:28:17 PM)
jmn are they doing well
jmn1108 (Mar 10, 2010 8:29:03 PM)
my boys are not normal DMD guys, both are able to take care of themselves, but recently my younger son had CHF, this was the first time either son has ever had any major issues DMD related
momma (Mar 10, 2010 8:29:22 PM)
chf?
anna (Mar 10, 2010 8:29:49 PM)
heart doesn't pump well enough to keep congestion out of heart
matt-p (Mar 10, 2010 8:29:55 PM)
great hope the younger one is doing ok from the chf
jmn1108 (Mar 10, 2010 8:29:56 PM)
yeah, two brothers living at home and a ramp at the door, hard to explain, she lives at home because she can't afford to move out
jmn1108 (Mar 10, 2010 8:30:15 PM)
congestive heart failure
momma (Mar 10, 2010 8:30:20 PM)
duh ok sorry
anna (Mar 10, 2010 8:30:50 PM)
many have to live at home---right Momma?
jmn1108 (Mar 10, 2010 8:31:25 PM)
he is almost back to normal as normal can be but i am shell shocked and always asking "are you ok" with every strange sound or weird facial movement
anna (Mar 10, 2010 8:31:25 PM)
world is very difficulot these days for our young people trying to find good jobs
momma (Mar 10, 2010 8:31:26 PM)
aqctually my daughter move out today
momma (Mar 10, 2010 8:31:53 PM)
found a friend to share rent
anna (Mar 10, 2010 8:31:59 PM)
wow Momma--your chick left the nest
anna (Mar 10, 2010 8:32:08 PM)
hope she is close by
matt-p (Mar 10, 2010 8:32:18 PM)
great momma wishing her good luck from indiana
jmn1108 (Mar 10, 2010 8:32:35 PM)
mine has a great job that pays well with great benefits BUT she must live in this county and housing is outrageous where we live
anna (Mar 10, 2010 8:32:41 PM)
my daughter is across the state
momma (Mar 10, 2010 8:32:50 PM)
yes thank goodness love her dearly but she =was gone for 5 yrs and move in got used to her being gone
jmn1108 (Mar 10, 2010 8:33:05 PM)
where in IN do you live matt? we live in IL
momma (Mar 10, 2010 8:33:15 PM)
she only 25-30 min away
anna (Mar 10, 2010 8:33:17 PM)
try housing in this area! horrible
momma (Mar 10, 2010 8:33:51 PM)
this is a 2 bedroom apartment $400. a month
momma (Mar 10, 2010 8:34:02 PM)
plus utilities
anna (Mar 10, 2010 8:34:04 PM)
our rent is over $1100 per month for 2 bed/2 bath
jmn1108 (Mar 10, 2010 8:34:07 PM)
we were actually in WA, seattle last summer, visited my niece in Ruston
momma (Mar 10, 2010 8:34:09 PM)
ill bet
matt-p (Mar 10, 2010 8:34:12 PM)
i am in madison home of the oh boy oberto miss madison points champion of hydroplane boats
anna (Mar 10, 2010 8:34:38 PM)
oh J, contact me is you ever come visit here again
anna (Mar 10, 2010 8:34:43 PM)
if
matt-p (Mar 10, 2010 8:34:44 PM)
the last 2 years points champion
jmn1108 (Mar 10, 2010 8:35:18 PM)
madison, IN? or madison, WI? just confused a bit
matt-p (Mar 10, 2010 8:35:32 PM)
madison indiana
jmn1108 (Mar 10, 2010 8:35:36 PM)
oberto pepperoni
matt-p (Mar 10, 2010 8:35:41 PM)
yep
jmn1108 (Mar 10, 2010 8:35:56 PM)
oh, not sure where that is
matt-p (Mar 10, 2010 8:36:11 PM)
right on the ohio river
jmn1108 (Mar 10, 2010 8:36:12 PM)
Anna we may head out that way with the boys this summer
jmn1108 (Mar 10, 2010 8:36:32 PM)
ahh south, we live in a suburb of chicago
anna (Mar 10, 2010 8:36:36 PM)
we live very near Seattle
anna (Mar 10, 2010 8:37:09 PM)
although we still have a home at beach
anna (Mar 10, 2010 8:37:30 PM)
we visited our home last week-end
jmn1108 (Mar 10, 2010 8:37:36 PM)
we went to WA and BC for our 30th anniversary and after the olympics the boys keep asking to go out
jmn1108 (Mar 10, 2010 8:38:08 PM)
which beach? we visited many and have many favorites, such a beautiful state!
matt-p (Mar 10, 2010 8:38:16 PM)
i cant wait for the boat race here
jmn1108 (Mar 10, 2010 8:38:29 PM)
are the races on the Ohio?
anna (Mar 10, 2010 8:38:42 PM)
near Ocean Shores--in a small town you have to go thru to get to ocean
matt-p (Mar 10, 2010 8:39:01 PM)
the miss madison sometimes gives me a free ticket for all 3 days
matt-p (Mar 10, 2010 8:39:07 PM)
yes
anna (Mar 10, 2010 8:39:15 PM)
wow Matt-nice!
jmn1108 (Mar 10, 2010 8:39:23 PM)
don't remember ocean shores, we did the olympic NP tour
jmn1108 (Mar 10, 2010 8:39:40 PM)
lucky you, matt sounds like a fun weekend
matt-p (Mar 10, 2010 8:39:54 PM)
give me and and one for an aide free tickets for all 3 days
matt-p (Mar 10, 2010 8:39:59 PM)
yes
anna (Mar 10, 2010 8:40:02 PM)
well, our town is on the Olympic penninsula, southern part of rain forest
jmn1108 (Mar 10, 2010 8:40:17 PM)
i may need to ask you for some help with accessible hotels, cabin, etc in the area
matt-p (Mar 10, 2010 8:40:45 PM)
who jmn
jmn1108 (Mar 10, 2010 8:40:52 PM)
I am sure we were through it or near it just must have been blinded by the beauty
anna (Mar 10, 2010 8:41:08 PM)
well, I probably don't know any---there are somje good disabled travel books/sites tho
jmn1108 (Mar 10, 2010 8:41:35 PM)
quilualt(sp) or hoh?
momma (Mar 10, 2010 8:41:49 PM)
brb
jmn1108 (Mar 10, 2010 8:41:50 PM)
quinault
momma (Mar 10, 2010 8:41:54 PM)
(This user has left DigiChat)
anna (Mar 10, 2010 8:41:59 PM)
hoh
matt-p (Mar 10, 2010 8:42:08 PM)
a good one i think is holiday inn
anna (Mar 10, 2010 8:42:25 PM)
but you cannot find a HI in our town
jmn1108 (Mar 10, 2010 8:42:39 PM)
ahhh, we went in aug during the record temps and rainforest drought but still loved it
matt-p (Mar 10, 2010 8:42:40 PM)
oh no
anna (Mar 10, 2010 8:43:01 PM)
Lake Quinault is 30 miles north of our home
jmn1108 (Mar 10, 2010 8:43:22 PM)
we have found that microtel has really nice accessible rooms too but only one in Wa
jmn1108 (Mar 10, 2010 8:44:06 PM)
we stayed at Sol Duc. they state they have accessible cabins but I don't remember anything about them
anna (Mar 10, 2010 8:44:11 PM)
Long Beach is to the south of us and has a loooong wc accessable boardwalk
matt-p (Mar 10, 2010 8:44:22 PM)
jmn if you look up the ones offered in a set route they usealy have what they have to offer
matt-p (Mar 10, 2010 8:45:07 PM)
some are better that others
anna (Mar 10, 2010 8:45:17 PM)
never stayed at Sol Duc and not so familiar with northern penninsula. R had not been home in over a year
anna (Mar 10, 2010 8:45:50 PM)
it doesn't seem like "home" anymore
jmn1108 (Mar 10, 2010 8:45:54 PM)
we have used websites in the past but because I know there is limited lodging in the area, last minute changes due to lack of proper accom. are not really possible
matt-p (Mar 10, 2010 8:46:16 PM)
thats true
anna (Mar 10, 2010 8:46:50 PM)
we couldn't camp anymore with R as he needs breathing help all the time now and generators are too noisy for campgrounds
matt-p (Mar 10, 2010 8:46:52 PM)
website check and a phonecall
jmn1108 (Mar 10, 2010 8:46:54 PM)
why not like home? because of you not being there or because the area has become "twilighted"
anna (Mar 10, 2010 8:47:25 PM)
Forks is quite "twilighted" lol
jmn1108 (Mar 10, 2010 8:47:29 PM)
yeah, i will have to make calls
jmn1108 (Mar 10, 2010 8:48:04 PM)
yeah, never read a twilight book but my niece warned us, i got home and read all the books afterward
matt-p (Mar 10, 2010 8:48:35 PM)
the last trip i was on we was able to have some dates for when we called and that helps to
anna (Mar 10, 2010 8:48:40 PM)
my hubby lost his shipyard electrician job and now works near where R and I got the apartment--so, 3's a crowd
jmn1108 (Mar 10, 2010 8:49:22 PM)
had to get used to living with hubby again, but good he found other employment
anna (Mar 10, 2010 8:49:25 PM)
we don't travel much--but do like cruises
anna (Mar 10, 2010 8:49:54 PM)
oh, didn't remember he lost his job
matt-p (Mar 10, 2010 8:49:54 PM)
i would love to do a cruis
matt-p (Mar 10, 2010 8:50:07 PM)
cruise
anna (Mar 10, 2010 8:50:08 PM)
Alaska is awesome
jmn1108 (Mar 10, 2010 8:50:13 PM)
never been on a cruise, but we may take one to Alaska, it is more difficult with two wheelchair users
anna (Mar 10, 2010 8:50:35 PM)
the disabled cabins are large
jmn1108 (Mar 10, 2010 8:50:53 PM)
I was meaning that you had to get used to your hubby
matt-p (Mar 10, 2010 8:50:55 PM)
i love my w/c
matt-p (Mar 10, 2010 8:51:06 PM)
it is so comfy
jmn1108 (Mar 10, 2010 8:51:20 PM)
but would they fit two?
anna (Mar 10, 2010 8:51:29 PM)
we had to take Hoyer/potty chair/extra wc/bi-pap/cough assist and so on. but then you get to stay inj same place for a week
jmn1108 (Mar 10, 2010 8:51:32 PM)
in one room?
anna (Mar 10, 2010 8:51:50 PM)
yes
jmn1108 (Mar 10, 2010 8:52:17 PM)
we stayed in an accessible yurt in oregon in oct 2008, that was very nice
anna (Mar 10, 2010 8:52:53 PM)
oh yes, have heard about those. good you travel so much while the guys still can easily
matt-p (Mar 10, 2010 8:53:16 PM)
think it would be neat to go stay in a cabin someplace
anna (Mar 10, 2010 8:53:34 PM)
until you had to go to out-house at 3 am
jmn1108 (Mar 10, 2010 8:53:52 PM)
well, nothing is that easy with two chairs but we make an adventure of it, van rentals are more common and the airlines are extremely helpful
jmn1108 (Mar 10, 2010 8:54:12 PM)
urinals work well at 3 am
anna (Mar 10, 2010 8:54:27 PM)
yes, or any other time as well
jmn1108 (Mar 10, 2010 8:54:48 PM)
so true, except on an airplane!!!!
matt-p (Mar 10, 2010 8:54:52 PM)
i dont have to have eather
anna (Mar 10, 2010 8:54:54 PM)
some do travel on planes with vents but we haven't tried it yet
anna (Mar 10, 2010 8:55:14 PM)
we would use a leg-bag on plane
jmn1108 (Mar 10, 2010 8:56:08 PM)
we have flown Southwest and Airtran, both extremely helpful, they do all the tranfers and move equiment for you at the gate
anna (Mar 10, 2010 8:56:11 PM)
last time we flew R didn't need help breathing and we helped him pee under a blanket
matt-p (Mar 10, 2010 8:56:14 PM)
alleragies to caths and double incon
jmn1108 (Mar 10, 2010 8:56:22 PM)
how do you use a legbag?
anna (Mar 10, 2010 8:56:41 PM)
in Minn they gave us a wc without a headrest to transfer in
jmn1108 (Mar 10, 2010 8:57:10 PM)
we tried that but they had a hard time thinking a steward might walk by
anna (Mar 10, 2010 8:57:19 PM)
condom cath/tube/bag strapped to leg. R wears one to work.
jmn1108 (Mar 10, 2010 8:58:06 PM)
ohh that might be difficult both airlines had headrests
anna (Mar 10, 2010 8:59:25 PM)
well, he put his head on hubby's tummy and that worked, but hubby couldn't leave
jmn1108 (Mar 10, 2010 8:59:43 PM)
oh that is a problem
anna (Mar 10, 2010 9:00:28 PM)
but, the power chair traveled well and stayed together--but no vent attached to it back then
jmn1108 (Mar 10, 2010 9:00:29 PM)
matt you should try to find some nearby camping to try out
matt-p (Mar 10, 2010 9:00:47 PM)
i want to bad
jmn1108 (Mar 10, 2010 9:00:53 PM)
not sure how that would work
anna (Mar 10, 2010 9:01:15 PM)
R used to in Scouts, but now would need alternating mattress and hospital bed
matt-p (Mar 10, 2010 9:01:17 PM)
just need w/c cabin
jmn1108 (Mar 10, 2010 9:01:38 PM)
there are many nice places near you to try, we have went your way many spring breaks camping with my sons
anna (Mar 10, 2010 9:01:42 PM)
oh! cabins are cheating Matt! try a tent
anna (Mar 10, 2010 9:02:04 PM)
ants/snakes/skunks too
jmn1108 (Mar 10, 2010 9:02:12 PM)
many nat or state parks have wonderful accessible places
matt-p (Mar 10, 2010 9:02:20 PM)
anna i would rather camp that way but that would be to hard on aide
anna (Mar 10, 2010 9:02:41 PM)
yes, hardr on caregiver
jmn1108 (Mar 10, 2010 9:02:44 PM)
Land between the lakes and Shawnee are near you both places we have camped
matt-p (Mar 10, 2010 9:03:01 PM)
cabin would make it easy on aide is the only reason
jmn1108 (Mar 10, 2010 9:03:06 PM)
and close to matt
matt-p (Mar 10, 2010 9:04:09 PM)
its kinda hard getting aides for allweekend for something like that
jmn1108 (Mar 10, 2010 9:04:13 PM)
not sure about cabins in the area but they have nice paved sites and family bathrooms
anna (Mar 10, 2010 9:04:23 PM)
do you have aides for your sons J? our shower aide is coming soon
matt-p (Mar 10, 2010 9:04:36 PM)
i had to put in for aide last july for this july for the boat races
anna (Mar 10, 2010 9:05:10 PM)
R just going on the WC GAng chat in a minute Matt, but I see no one is there right now
jmn1108 (Mar 10, 2010 9:05:20 PM)
well, next time we head south to camp I will invite you matt
jmn1108 (Mar 10, 2010 9:05:55 PM)
not aides needed yet, since they take care of themselves, mostly
matt-p (Mar 10, 2010 9:06:01 PM)
i would love to go just not sure how i would you allready have to to help
anna (Mar 10, 2010 9:06:27 PM)
wonderful--aides add a whole new thing to this dmd experience
jmn1108 (Mar 10, 2010 9:06:45 PM)
yeah but the more the merrier, when we travel south, we always bring extended family
anna (Mar 10, 2010 9:06:49 PM)
ours is a Russian art teacher
anna (Mar 10, 2010 9:07:34 PM)
R will have to get a new aide next month and that is usually interesting
jmn1108 (Mar 10, 2010 9:07:45 PM)
we may need to get one soon, just fearful of leaving them since m's CHF, which started while hubby and I were on vacation in the bahamas
matt-p (Mar 10, 2010 9:08:01 PM)
that and me being double incon and alleryies to cathes and stuff
jmn1108 (Mar 10, 2010 9:08:48 PM)
my daughter was home as there backup but I don't think I can do that to her again, freaked her out
matt-p (Mar 10, 2010 9:08:55 PM)
my tummy is notorius for being very unpredictable
anna (Mar 10, 2010 9:09:02 PM)
good thing for family close by J--we don't have anyone near that is under 84 years old
jmn1108 (Mar 10, 2010 9:10:12 PM)
fortunately we live in the same town as my hubby;s ENTIRE family, and they are all so helpfu, calling when we least expect it and need them most
matt-p (Mar 10, 2010 9:10:30 PM)
great
jmn1108 (Mar 10, 2010 9:10:48 PM)
we are truly blessed
anna (Mar 10, 2010 9:10:52 PM)
went to visit my mom who is 94 and we watched part of opera "Carmen" with her. never knew her jealous boyfriend stabbed her to death.
matt-p (Mar 10, 2010 9:11:01 PM)
my mom dad both have pasted i have noone close
jmn1108 (Mar 10, 2010 9:11:21 PM)
do you live on your own matt?
jmn1108 (Mar 10, 2010 9:11:42 PM)
never knew that either
matt-p (Mar 10, 2010 9:12:00 PM)
i have aides come in for 6 hrs a day
jmn1108 (Mar 10, 2010 9:12:11 PM)
what about 7?
anna (Mar 10, 2010 9:12:11 PM)
she was in love with toreador and dumped soldier
matt-p (Mar 10, 2010 9:12:29 PM)
2 3 hr shifts
jmn1108 (Mar 10, 2010 9:12:45 PM)
are you alone the rest of the time?
anna (Mar 10, 2010 9:12:56 PM)
Matt, how do you get along by yourself? I thought you had a roommate to help?
matt-p (Mar 10, 2010 9:13:11 PM)
no roommate
jmn1108 (Mar 10, 2010 9:13:23 PM)
wow, how do you do it?
matt-p (Mar 10, 2010 9:13:33 PM)
i just sit here and chat
matt-p (Mar 10, 2010 9:13:54 PM)
i sit in my lazyboy till they come
matt-p (Mar 10, 2010 9:14:09 PM)
then i get in w/c
matt-p (Mar 10, 2010 9:14:15 PM)
or bed
anna (Mar 10, 2010 9:14:16 PM)
Matt--are you comfortable with that?
matt-p (Mar 10, 2010 9:14:25 PM)
kinda
matt-p (Mar 10, 2010 9:14:49 PM)
any more than that i would have to go in nurseing home
jmn1108 (Mar 10, 2010 9:14:56 PM)
do you play any online games?
matt-p (Mar 10, 2010 9:14:59 PM)
so they say
matt-p (Mar 10, 2010 9:15:12 PM)
just facebook
jmn1108 (Mar 10, 2010 9:15:21 PM)
online games have brought the world to my sons
matt-p (Mar 10, 2010 9:15:26 PM)
if you call that a game
jmn1108 (Mar 10, 2010 9:15:34 PM)
facebook is good and cheap
jmn1108 (Mar 10, 2010 9:15:49 PM)
they play WOW and now Star Trek
matt-p (Mar 10, 2010 9:15:49 PM)
i dont do farmville or anything like that
anna (Mar 10, 2010 9:15:54 PM)
I don't like the soujnd of it.....is there any non-related family that would take you in?
jmn1108 (Mar 10, 2010 9:16:03 PM)
one does farmville
matt-p (Mar 10, 2010 9:16:21 PM)
no anna
anna (Mar 10, 2010 9:16:32 PM)
my son comes home from working at omputer all day and plays Farmville and has a restaurant
jmn1108 (Mar 10, 2010 9:16:47 PM)
What do you do on the 7th day?
anna (Mar 10, 2010 9:16:49 PM)
my mom lives in an adult family home
matt-p (Mar 10, 2010 9:17:08 PM)
they come 7 days a week
jmn1108 (Mar 10, 2010 9:17:18 PM)
I should ask m if he needs a new farmville friend
jmn1108 (Mar 10, 2010 9:17:47 PM)
oh ok, that's better, i thought you were alone one day a week
matt-p (Mar 10, 2010 9:17:55 PM)
i dont know how farmville works
matt-p (Mar 10, 2010 9:17:57 PM)
no
anna (Mar 10, 2010 9:18:30 PM)
it was nice you came by to chat J, please come again soon. I can only come Weds for a few more weeks until R and I are thru with our church small groups
matt-p (Mar 10, 2010 9:18:35 PM)
jmn are you on facebook
jmn1108 (Mar 10, 2010 9:19:19 PM)
if I hired an aide I would only need one an hour five days a week, just to make sure matt gets out of bed ok, it is a bit difficult since his HF but the dr said he should get better at it
anna (Mar 10, 2010 9:19:24 PM)
J, make sure to research breathing issues and see all our photos on fb or PPMD site
jmn1108 (Mar 10, 2010 9:19:30 PM)
yeah
anna (Mar 10, 2010 9:20:08 PM)
you can find me on fb since my name is given on PPMD link
matt-p (Mar 10, 2010 9:20:13 PM)
we should trde facebook nicks
jmn1108 (Mar 10, 2010 9:20:19 PM)
ok
jmn1108 (Mar 10, 2010 9:20:41 PM)
will do anna
anna (Mar 10, 2010 9:20:42 PM)
Matt is already my friend on fb---but a quiet friend!
anna (Mar 10, 2010 9:21:05 PM)
so you could link to him thru me
matt-p (Mar 10, 2010 9:21:18 PM)
anna i see you on but scared to bug you
jmn1108 (Mar 10, 2010 9:21:19 PM)
oh I will check him out
anna (Mar 10, 2010 9:21:39 PM)
go ahead and bug me--I will tell you if I cannot chat just then
matt-p (Mar 10, 2010 9:21:41 PM)
i have a pic of me in my w/c there
matt-p (Mar 10, 2010 9:21:49 PM)
ok
jmn1108 (Mar 10, 2010 9:21:58 PM)
i will have to check it out
anna (Mar 10, 2010 9:22:09 PM)
oh Matt--Ken is in the chat now
anna (Mar 10, 2010 9:22:22 PM)
he and Roy and Hen are the hosts
jmn1108 (Mar 10, 2010 9:22:28 PM)
if you get a request from a jean n that is me
anna (Mar 10, 2010 9:22:37 PM)
ok
jmn1108 (Mar 10, 2010 9:22:40 PM)
what time does this chat end?
matt-p (Mar 10, 2010 9:22:41 PM)
ok
anna (Mar 10, 2010 9:23:06 PM)
it ended at 15 after. sometimes it shuts down and sometimes not
anna (Mar 10, 2010 9:23:20 PM)
but no one new can get in now
jmn1108 (Mar 10, 2010 9:23:34 PM)
oh I see, well you all have a nic e week and I hope to chat soon
anna (Mar 10, 2010 9:23:45 PM)
I need to go--Goodnight you2
matt-p (Mar 10, 2010 9:23:51 PM)
jmn did you see my name on facebook i pmed it to you
jmn1108 (Mar 10, 2010 9:23:53 PM)
all of u 2
matt-p (Mar 10, 2010 9:24:00 PM)
nite anna
anna (Mar 10, 2010 9:24:07 PM)
Night
matt-p (Mar 10, 2010 9:24:10 PM)
be safe
anna (Mar 10, 2010 9:24:10 PM)
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jmn1108 (Mar 10, 2010 9:24:11 PM)
no, not on facebook
matt-p (Mar 10, 2010 9:24:27 PM)
oh piddle
matt-p (Mar 10, 2010 9:24:32 PM)
ok
jmn1108 (Mar 10, 2010 9:25:03 PM)
not logged on to facebook presently
matt-p (Mar 10, 2010 9:25:22 PM)
ok
matt-p (Mar 10, 2010 9:25:58 PM)
you guys get out this way and want to seee some good boat racein in july yell
jmn1108 (Mar 10, 2010 9:26:06 PM)
i will
matt-p (Mar 10, 2010 9:26:34 PM)
i have not told you my story
matt-p (Mar 10, 2010 9:26:56 PM)
i have sci from age 9 early onset parkinsons
matt-p (Mar 10, 2010 9:27:26 PM)
is why i am in w/c
matt-p (Mar 10, 2010 9:28:50 PM)
i have an invacare tilt in space i love it
matt-p (Mar 10, 2010 9:32:16 PM)
you still there
jmn1108 (Mar 10, 2010 9:33:40 PM)
yeah
jmn1108 (Mar 10, 2010 9:34:04 PM)
just trying to find you or anna on facebook
matt-p (Mar 10, 2010 9:34:38 PM)
whats your name on there i will look to
matt-p (Mar 10, 2010 9:35:13 PM)
look by email for me at dutchesbutch@yahoo.com
jmn1108 (Mar 10, 2010 9:37:19 PM)
should have got my request
matt-p (Mar 10, 2010 9:37:26 PM)
yep
matt-p (Mar 10, 2010 9:37:44 PM)
you did it
jmn1108 (Mar 10, 2010 9:38:08 PM)
technology works sometimes
jmn1108 (Mar 10, 2010 9:38:29 PM)
what is sci?
matt-p (Mar 10, 2010 9:38:35 PM)
i will soon add you on the way there then you can find ann under my friends list to add her
matt-p (Mar 10, 2010 9:38:48 PM)
spinal cord injury
jmn1108 (Mar 10, 2010 9:39:02 PM)
found her since I must wait for approval on her PPMD site
jmn1108 (Mar 10, 2010 9:39:20 PM)
how did that happen at age 9?
matt-p (Mar 10, 2010 9:39:20 PM)
ok
matt-p (Mar 10, 2010 9:39:38 PM)
fell off dads big truck
jmn1108 (Mar 10, 2010 9:40:18 PM)
oh, wow
matt-p (Mar 10, 2010 9:40:48 PM)
yes
jmn1108 (Mar 10, 2010 9:41:12 PM)
I bet that was tough at such a young age
matt-p (Mar 10, 2010 9:41:40 PM)
i would love to have friends outside of cares to do and go places with its just embaressing for me
matt-p (Mar 10, 2010 9:41:55 PM)
school was a total bugger
jmn1108 (Mar 10, 2010 9:42:35 PM)
why so embarrassing, you need to hold your head proud and live life
jmn1108 (Mar 10, 2010 9:43:29 PM)
I bet it was tough, I am a teaching assistant to a class of 1st graders and a class of 2nd graders so I do know how mean kids can be
matt-p (Mar 10, 2010 9:43:40 PM)
being double incon and needing help with that and being my age
jmn1108 (Mar 10, 2010 9:43:57 PM)
how old are you now?
jmn1108 (Mar 10, 2010 9:45:49 PM)
i am always the optomist, and start each day with a smile regardless of how bad life seems and at least you will look happy and eventually you will feel happy
jmn1108 (Mar 10, 2010 9:48:24 PM)
well, i need to head off to bad, have a nice night and always smile
jmn1108 (Mar 10, 2010 9:48:27 PM)
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matt-p (Mar 10, 2010 9:52:26 PM)
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matt-p (Mar 10, 2010 9:54:47 PM)
(This user has entered Parents of Young Adults with DMD)
matt-p (Mar 10, 2010 9:54:59 PM)
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