DMD Parent Chat

barryc (Nov 3, 2009 7:53:10 PM)
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barryc (Nov 3, 2009 7:53:29 PM)
hello anna

anna (Nov 3, 2009 7:53:30 PM)
Hey Barry

anna (Nov 3, 2009 7:53:43 PM)
long time....how are you and son/wife?

paper (Nov 3, 2009 7:53:54 PM)
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paper (Nov 3, 2009 7:54:02 PM)
hi all

anna (Nov 3, 2009 7:54:08 PM)
Hey Paper--what's the news?

paper (Nov 3, 2009 7:54:26 PM)
nothing much

barryc (Nov 3, 2009 7:54:38 PM)
my son is doing pretty well, although falling some... my wife has more problems, but she is a trooper

barryc (Nov 3, 2009 7:55:23 PM)
how are things for you, anna?

anna (Nov 3, 2009 7:55:27 PM)
it isn't easy--no Rose Garden with the MD's

barryc (Nov 3, 2009 7:55:44 PM)
so we should all do a chorus of "it isn't easy

anna (Nov 3, 2009 7:55:53 PM)
son with dmd almost 29--works as software engineer full-time

paper (Nov 3, 2009 7:55:54 PM)
lol\

anna (Nov 3, 2009 7:56:15 PM)
"I beg your pardon, I never promised you a rose garden"

anna (Nov 3, 2009 7:56:42 PM)
old CW song

barryc (Nov 3, 2009 7:56:54 PM)
very good for your son! working full time in today's labor market is quite a feather in his cap

anna (Nov 3, 2009 7:57:15 PM)
yes esp as he is on vent and can only move 2 fingers

barryc (Nov 3, 2009 7:57:27 PM)
yes... with MD, never promised arose garden is very right on...

anna (Nov 3, 2009 7:57:42 PM)
I am proud of him--he could have just stayed home and slept in

barryc (Nov 3, 2009 7:57:45 PM)
three cheers for your son!

anna (Nov 3, 2009 7:58:11 PM)
he is on his second contract at MS

barryc (Nov 3, 2009 7:58:21 PM)
Terry is going to a young adult gig for MD folks in Tampa next week... I hope it goes well

barryc (Nov 3, 2009 7:59:08 PM)
paper... what are your challenges?

anna (Nov 3, 2009 7:59:32 PM)
good--fellowship with others in same boat is wonderfull for our guys

paper (Nov 3, 2009 7:59:33 PM)
weakness pain

paper (Nov 3, 2009 8:00:10 PM)
swollowing problem

barryc (Nov 3, 2009 8:00:48 PM)
uhm... weakness and pain are soooo trying... our MMD families have those problems and swallowing too... my wife, with MMD, can choke on some foods (most recently a dry salmon croquette)

paper (Nov 3, 2009 8:01:16 PM)
i do it with liquids mostly

anna (Nov 3, 2009 8:01:27 PM)
R aspirated at work last week after trying to eat a peanut. using the cough assist caused his tongue to swell up so he couldn't close his mouth. had to monitor breathing with pulse ox.

barryc (Nov 3, 2009 8:01:42 PM)
yeh, the more slippery the food going down, the better, righjt?

anna (Nov 3, 2009 8:02:00 PM)
yes, I don't reccommend nuts

barryc (Nov 3, 2009 8:02:06 PM)
oh anna,,,, what a downer!

barryc (Nov 3, 2009 8:02:33 PM)
what are you guys doing about swine flu vaccine?

anna (Nov 3, 2009 8:02:44 PM)
he is fine now, but I was almost ready to call 911. then R pointed out his chances were better with me

anna (Nov 3, 2009 8:03:12 PM)
R's pulmonologist has him at top of list and will call when they get it

paper (Nov 3, 2009 8:03:13 PM)
i am not getting the h1n1 or reg flu shot

paper (Nov 3, 2009 8:03:49 PM)
i have never had the flu and i am not going to start now lol

paper (Nov 3, 2009 8:04:04 PM)
knock on wood

anna (Nov 3, 2009 8:04:06 PM)
R is respiratory challenged so he needs it, as well as pneumonia shot q 5 yrs

barryc (Nov 3, 2009 8:04:49 PM)
interesting.... we all got the flu shot... I then emailed our GP and our neurologist about swine flu.... the GP thought it wise to wait a few months, to see if there are unexpected downsides to swine flu vaccine.... the neurologist said to get the vaccine about one month after the regular flu shot...... sooooooo who knows!!!

anna (Nov 3, 2009 8:05:53 PM)
yes, medicine is a guess most of the time

paper (Nov 3, 2009 8:05:54 PM)
well did u know bk in the 70s when they gave out the h1n1 shot that a lot more people died or got really sick from it

barryc (Nov 3, 2009 8:06:24 PM)
yes, paper, you are right on... I forgot about that gig in the 70"s

anna (Nov 3, 2009 8:06:36 PM)
a lot of young people died in flu epidemic of 1918 and we wouldn't want to repeat that

paper (Nov 3, 2009 8:07:02 PM)
i dont know if they are making it like they did then but ill waite and see

barryc (Nov 3, 2009 8:07:18 PM)
I would be less concerned except that Terry now volunteers on Fridays at the Lowrey Petting Zoo.... and he is around kids.

anna (Nov 3, 2009 8:07:19 PM)
but now they are trying to blame the new use of ASA during tht time when drs didn't know how much to dose

paper (Nov 3, 2009 8:07:32 PM)
besides even if my daughter could getit she cant take shots of anykind

anna (Nov 3, 2009 8:08:20 PM)
it may be he might have to stay home for a bit from that--parents do send sick kids to school and activities

paper (Nov 3, 2009 8:08:30 PM)
she hasny had baby shots since she was 9 months

anna (Nov 3, 2009 8:08:47 PM)
she has a lot of challenges for sure

barryc (Nov 3, 2009 8:08:56 PM)
wow paper... why cannot she take shots?

paper (Nov 3, 2009 8:09:46 PM)
she had an allergic reaction to her shots at that time and she spiked a 108 deg temp and we allmost lost her so no more shots

barryc (Nov 3, 2009 8:10:18 PM)
interesting how many everyday challenges affect our MD loved ones.... I just cannot imagine that families living free of severe diseases could ever realize what we go through daily

paper (Nov 3, 2009 8:10:44 PM)
we had to take her case to the state board of health

paper (Nov 3, 2009 8:11:09 PM)
i am the one that has md barry

anna (Nov 3, 2009 8:11:21 PM)
they don't realize what it takes to get our kids ready for "everyday activities". I know no one knows it takes me 2 hours to get R out the door for work everyday

barryc (Nov 3, 2009 8:11:31 PM)
paper... I can see how much shots are a threat now.... if she needs intraveneous, or a blood transfusion, can she get those things?

paper (Nov 3, 2009 8:12:04 PM)
ya just not flu or baby shots it is something they put in them

paper (Nov 3, 2009 8:12:14 PM)
or how they are made

barryc (Nov 3, 2009 8:12:16 PM)
anna... it is a love of labor that goes with the territory... and I know how much it takes to do it daily

anna (Nov 3, 2009 8:12:34 PM)
yes, we all understand in these chats

paper (Nov 3, 2009 8:13:07 PM)
i do to anna i took care of a spinal cord pt for 6 years it took 4 hrs just to get him ready every day

barryc (Nov 3, 2009 8:13:43 PM)
julie, my wife, grew up so healthy.. .she played baseball better than most of my friends... now she can hardly walk at all, and I need to help dress her and walk with her, or get a caregiver to do likewise.

anna (Nov 3, 2009 8:14:06 PM)
having good luck with caregivers Barry?

barryc (Nov 3, 2009 8:14:22 PM)
yes anna,,, we have some realy

anna (Nov 3, 2009 8:14:23 PM)
R has one for 3 hours at work to feedhim lunch

paper (Nov 3, 2009 8:14:28 PM)
i know what that is like i used to do a lot when i was a kid

barryc (Nov 3, 2009 8:15:00 PM)
yes anna, we have some really great caregivers... just recently I hired another one, after getting over 150 inquiries from a newspaper ad

anna (Nov 3, 2009 8:15:31 PM)
and a shower aide 3 nights a week--but he cannot do the feeding tube/meds/breathing stuff so I need to still be around

barryc (Nov 3, 2009 8:15:39 PM)
anna... I am trained as an industrial psychologist, and so hiring people for key jobs comes with the territory.

anna (Nov 3, 2009 8:16:31 PM)
an interesting field I think

paper (Nov 3, 2009 8:16:32 PM)
i have seen some really crappy aids over the years

barryc (Nov 3, 2009 8:16:34 PM)
anna and paper... you two are really special people

paper (Nov 3, 2009 8:16:40 PM)
ty

anna (Nov 3, 2009 8:16:49 PM)
ty--but as you know we just keep keeping on

barryc (Nov 3, 2009 8:17:08 PM)
I ought to write an article for quest on what to do to find and select the best candidates for caregiving jobs.

barryc (Nov 3, 2009 8:17:34 PM)
yes, industrial psycholog

anna (Nov 3, 2009 8:18:03 PM)
yes you should. most articles talk about how to choose between all the people lining up to do it---but actually you are luckey if one shows up for the job.

barryc (Nov 3, 2009 8:18:08 PM)
yes, industrial psychology is a great career field... I have worked with coke, pepsi, oppenheimer, and the list goes on.

paper (Nov 3, 2009 8:18:25 PM)
cool barry go for it

anna (Nov 3, 2009 8:18:56 PM)
I majored in soc, but really need my Master's degree to do anything

anna (Nov 3, 2009 8:19:11 PM)
it is on hold....

barryc (Nov 3, 2009 8:19:18 PM)
yes, anna... dependability is a critical attribute to select in caregivers.... when you have 150 inquiries, finding the best is less a burdon... just takes a lot of work

barryc (Nov 3, 2009 8:20:18 PM)
yes, anna... soc is like psych... masters necessary... PhD (which I have) really can make a big difference, including getting university

anna (Nov 3, 2009 8:20:21 PM)
our showr aide barely speaks english, but he is good and been around a long time(a year is a long time for us!)

barryc (Nov 3, 2009 8:20:22 PM)
univeristy

paper (Nov 3, 2009 8:20:25 PM)
finding a nice boss to work for is hard to do too one that wont turn on you after the honeymoon period is over

barryc (Nov 3, 2009 8:20:25 PM)
jobs.

anna (Nov 3, 2009 8:21:12 PM)
they are so underpaid that they tend to leave asap

anna (Nov 3, 2009 8:21:49 PM)
are you and your son going to write another book?

barryc (Nov 3, 2009 8:21:57 PM)
well... paying them well (privately) does help a lot, but I try to select caregivers who are financially stable with or without the job.

barryc (Nov 3, 2009 8:22:58 PM)
anna... terry and I started an outline for a second book and it is there for us.... problem is Terry is dating now (and the three girls do not have MD) sooo you know where his interests are now!

paper (Nov 3, 2009 8:23:05 PM)
isnt that hard to do barry

paper (Nov 3, 2009 8:23:33 PM)
3 wow lucky him lol

anna (Nov 3, 2009 8:24:28 PM)
ah ha...maybe Terry could write about how disabled can date just like everyone else. so many of our guys are too shy to try

anna (Nov 3, 2009 8:24:58 PM)
I am sorry, but we have to go eat dinner--we get home just as chat starts

paper (Nov 3, 2009 8:25:17 PM)
thats ok anna i think i an going to go to

anna (Nov 3, 2009 8:25:24 PM)
I have been cooking while we chat and it cannot wait anymore

barryc (Nov 3, 2009 8:25:25 PM)
it all happened when terry could not get a date at a dance club... girls said he was disabled and they did not want to take care of someone with "problems".... so we wrote a profile for a date line and explained that Terry was stable, happy, and a lot of fun,,, he had a muscle disease but could walk.. .he just wanted a chance with the right girl... emails and phone calls have come in since... and terry is mr. popular on the dateline chat line.

barryc (Nov 3, 2009 8:25:43 PM)
ok gu

anna (Nov 3, 2009 8:25:47 PM)
good for him!!!

barryc (Nov 3, 2009 8:25:54 PM)
ok guys,,,, good talking to you... take care pap

barryc (Nov 3, 2009 8:26:01 PM)
take care

anna (Nov 3, 2009 8:26:02 PM)
it reflects on awesome parenting of course!

anna (Nov 3, 2009 8:26:10 PM)
Goodnight

barryc (Nov 3, 2009 8:26:19 PM)
thanks anna,,, good night

paper (Nov 3, 2009 8:26:20 PM)
night anna

barryc (Nov 3, 2009 8:26:24 PM)
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anna (Nov 3, 2009 8:26:26 PM)
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paper (Nov 3, 2009 8:26:29 PM)
night

paper (Nov 3, 2009 8:26:31 PM)
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