Hi, My son is still interested in hippotherapy, so I'm considering a class.
I finally found a program that seems most qualified for neuromuscular
issues.   Adam enjoyed it when he was younger, but I suppose I have more
concerns now.  I guess I'm wondering if anyone is still riding over the age
of eight.
Joanne


----- Original Message -----
From: "donnajeffrey2000" <donnajeffrey2000@...>
To: <MD-List@yahoogroups.com>
Sent: Saturday, April 30, 2005 10:06 PM
Subject: [MD-List] Need info on lifts


> Hi all. I am going on a cruise in June and am looking for a travel
> hoyer lift. Something lightweight and can fold up. So far I have found
> a couple websites but since I am paying for it out of pocket they are
> out of my price range. Any ideas on where to find used or discounted
> equipment?
>
> Donna
>
>
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>
>

We recently got our son Ryan (14) a very sophisticated Philips remote
control device.  Its loaded with a program called Pronto.  Basically, its
like a universal remote control.  It operates his TV/VCR, his stereo, the
main TV and DVD player and a light in his room.  The kicker is that it also
operates a phone.  It all works on infrared just like any other remote
control.

The organization that supplied it also supplied a holder that attaches to
his wheelchair.  Alas, when we leave him alone, we put the device on his
chair and he can call us using the speakerphone by dialing on the Pronto.
About our only concern left is that he is locked in the house.  Thats a bit
scary but then our freedom has to come at some price.  Once we get a remote
control door, we'll pretty much be set.  For more information visit
www.pronto.philips.com.

Owen


----- Original Message -----
From: "Arlene " <breezytimber@...>
To: <MD-List@yahoogroups.com>
Sent: Saturday, April 30, 2005 12:38 PM
Subject: [MD-List] Caring for child when alone


> I would immagine it is also hard living alone and caring for a DMD
> son.  When they are older they may not be able to get to the phone for
> help if the single parent would seriously injure theirself.  I used to
> leave Mike alone for a hour or two, but now I am not sure he could get
> to the phone.  Yesterday I had to get a package to the post office, I
> let him alone and was very worried if something would have happened to
> me when would someone discover he was alone.  He was at the computer so
> he could have emailed his bother and others to call 911 for him. His
> phone was also next to him.  I didn't think much of it until I left
> than I began to worry.  Wasn't going that long but suppose I would have
> had a accident.
> Arlene
>
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>

Thank you all for your feedback.  I will follow up on
those web links.  It sounds like the rule of thumb is
to exercise in a manner that is enjoyable to our
grandson.  For example he liked to ride a bike and I
would take him out riding pretty regularly for about a
month or so.  Then the call of work side-tracked me
and I stopped doing it.  Since our son is not into
physical movement he never initiated bike riding even
though our grandson would ask him for it.

When he would get tired, we would stop.  Simple as
that.  I like the idea of singing and musical
instrument.  That makes sense and I think I will bring
up the idea with our son.

Thanks again and I will be in contact.


Tony Herrera

__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

Ian had a very similar experience at camp.  His walking deteriorated so much
during that week that his teacher phoned home to ask what had happened to
him.  We did get him up walking again, but he lost this ability on his
Make-A-Wish trip to Disney World this past February, where everything was so
accessible with his power wheelchair.

Johanna

----- Original Message -----
From: "knuckles 145" <knuckles145@...>
To: <MD-List@yahoogroups.com>
Sent: Saturday, April 30, 2005 1:57 PM
Subject: Re: [MD-List] Re: Any opinions on the role of exersize?


> My son stopped walking completely one week at camp.  I don't think
> they made him got up and walk every day like we did and he had
> somebody to push his manual chair everywhere for him, where at home it
> was still easier to get up and  walk then wait for somebody to push
> him.  It was amazing the difference that one week of not walking made
> in his sense of balance.
>
> Beth.
>

Hi all. I am going on a cruise in June and am looking for a travel
hoyer lift. Something lightweight and can fold up. So far I have found
a couple websites but since I am paying for it out of pocket they are
out of my price range. Any ideas on where to find used or discounted
equipment?

Donna

There is a program in some states that provide a special telephone via the TEPP
program (can't remember what the letter stand for).  My son was able to purchase
a $300 phone with a TEPP voucher.  You can program the phone to take one one
number to dial.  I think it also can be voice actived.  then there is a small
switch that our guys can wear around there neck and press it to call or receive
calls.  My son reclines in his wheelchair for an hour at noon everyday.  By
pressing the small switch, he can answer the phone in the dining room from the
living room (It's a good distance speaker phone, although the tone is a bit
tinny.   My kid also each carry a cell phone in their fanny packs hanging on
their wheelchairs.   I rarely worry when I'm gone because they have a couple of
resources, including a computer to use emai.

Andrea

----Original Message-----
From: MD-List@yahoogroups.com on behalf of Arlene
Sent: Sat 4/30/2005 2:38 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] Caring for child when alone

I would immagine it is also hard living alone and caring for a DMD
son.  When they are older they may not be able to get to the phone for
help if the single parent would seriously injure theirself.  I used to
leave Mike alone for a hour or two, but now I am not sure he could get
to the phone.  Yesterday I had to get a package to the post office, I
let him alone and was very worried if something would have happened to
me when would someone discover he was alone.  He was at the computer so
he could have emailed his bother and others to call 911 for him. His
phone was also next to him.  I didn't think much of it until I left
than I began to worry.  Wasn't going that long but suppose I would have
had a accident.
Arlene







Yahoo! Groups Links

I have to deal with that alot.  So far, I do leave Jason alone for
about 30 mins maximum, if I have to drop my other son off somewhere
etc.  He has a cell phone with him and several neighbors are on
speeddial, but still  I really worry.

Beth M.


On 4/30/05, Arlene <breezytimber@...> wrote:
> I would immagine it is also hard living alone and caring for a DMD
> son.  When they are older they may not be able to get to the phone for
> help if the single parent would seriously injure theirself.  I used to
> leave Mike alone for a hour or two, but now I am not sure he could get
> to the phone.  Yesterday I had to get a package to the post office, I
> let him alone and was very worried if something would have happened to
> me when would someone discover he was alone.  He was at the computer so
> he could have emailed his bother and others to call 911 for him. His
> phone was also next to him.  I didn't think much of it until I left
> than I began to worry.  Wasn't going that long but suppose I would have
> had a accident.
> Arlene
>
>
>
> Yahoo! Groups Links
>
>
>
>
>

My son stopped walking completely one week at camp.  I don't think
they made him got up and walk every day like we did and he had
somebody to push his manual chair everywhere for him, where at home it
was still easier to get up and  walk then wait for somebody to push
him.  It was amazing the difference that one week of not walking made
in his sense of balance.

Beth.

On 4/30/05, Arlene <breezytimber@...> wrote:
> I agree with you Adele, I have been around long enough to see if it
> makes a difference, and it does.  I am not saying go to the gym and
> do hard exercises, just normal things like walking with a friend,
> doing little chores to make them feel needed etc.  Last winter Mike
> didn't go out as much as he had more trouble using the chair in the
> cold. In the spring when I took him for a check up he couldn't hardly
> drive.  I told him he didn't hardly get any exercise driving all
> winter.  Fortunately he worked at driving up and down the driveway
> and did get back to driving.  This winter I noticed he has been
> driving around the house, going in his bathroom circling around and
> up the hall.  He was also going in the basement where there is more
> room and driving.  He did not loose control of the chair this winter,
> and has been in the driveway every day it is warm enough.  Exercise
> does help. On my goat website you can see him a couple years ago in
> the driveway.  Click family on the left. This is a long driveway and
> he had to walk up and down to catch the school bus.
> http://www.geocities.com/breezytimber/breezy.html
> Arlene
>
> --- In MD-List@yahoogroups.com, "Adele" <jasona65@c...> wrote:
> > Welcome to the list.  It's good to see grandparents getting
> involved.
> >
> > I'm Adele and my son Jason is now 20 and has DMD.
> >
> > It has been my experience that any type of exercise is better than
> nothing
> > at all.  I started thinking like this after I had gotten Jason in
> the first
> > study of Gentimicin that was conducted at Columbia University about
> 12 years
> > ago.  The study had 20 boys, 10 got the drug and 10 didn't.  At the
> end of
> > the 3 week study, all 20 of the boys showed marked improvement in
> what they
> > could do and how long they could do it.  When we returned home and
> to
> > school, everybody could see a difference in what Jason was able and
> willing
> > to do.  The one item that both groups of boys had was intense
> physical
> > therapy.
> >
> > From that point, I have lived with the motto of "Use it, or lose it"
> >
> > The one thing to remember it that a good quality of life is what we
> strive
> > to give our kids. A child that see other kids doing things and they
> can't,
> > how is that going to effect they mental development?
> >
> > In the course of his life, Jason has been involved in baseball,
> swimming,
> > karate, boys scouts, Civil Air patrol, and ROTC in High school.
> Now Jason
> > is a wheelchair athlete.  He plays hockey and football.  He is an
> advent on
> > line gamer and spends most of his time doing that, when he's not
> playing
> > football or Hockey.
> >
> > There is a difference of opinions as to whether exercise is good or
> not.
> > Some say that by using the muscles, you shorten the overall life
> expectancy
> > of the muscles. Others believe that by doing some exercise, to
> prolong the
> > quality of that muscle, to a point.  My own experience with Jason
> is he's
> > now 20, has a good heart and lungs, and he's happy.  That's the
> bottom line.
> >
> > Good luck and we hope to hear more from you about your grandson,
> and hope to
> > see mom and dad on the list.
> >
> > Adele
> >
> > -----Original Message-----
> > From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
> Behalf Of
> > Tony Herrera
> > Sent: Friday, April 29, 2005 12:08 PM
> > To: MD-List@yahoogroups.com
> > Subject: [MD-List] Any opinions on the role of exersize?
> >
> > Hello list members,
> >
> > I joined about 8 months or so ago because I wanted to
> > get a handle on our grandson who has DMD.  He is now 7
> > years old and going to school.  Our son is of the
> > opinion that regardless of what efforts he makes
> > provide our grandson exercize, he will deteriorate
> > anyway.  Our son lives a sedentary life style as it
> > is.  They will sit for hours and watch movies and TV
> > as a main form or recreation.
> >
> > My wife and I believe that regardless of that reality,
> > exersize and good nutrion play an important role in
> > his getting the most out of his little body's
> > abilities.  Our grandson will get stiff and sore
> > muscles just with normal walking and climbing stairs
> > and he gets frequent massages and stretches to help
> > limber him up.
> >
> > Any thouhts on the role of exercize?  What about
> > vitamins and diet?  Any feedback is welcome.
> >
> > Tony
> >
> >
> >
> >
> > __________________________________________________
> > Do You Yahoo!?
> > Tired of spam?  Yahoo! Mail has the best spam protection around
> > http://mail.yahoo.com
> >
> >
> >
> >
> > Yahoo! Groups Links
>
>
> Yahoo! Groups Links
>
>
>
>
>

I know how you feel.  I often have to leave Jason home alone.  The phone in
is room is a speaker phone, but if he drops it, then he's in trouble.  Then,
I have to leave a door unlocked just in case one of my neighbors has to get
in the house while I'm out.  Jason sits in front of the computer most of the
day, do I don't work about him, but I do worry about in case of an
emergency.

Adele

-----Original Message-----
From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of
Arlene
Sent: Saturday, April 30, 2005 3:39 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] Caring for child when alone

I would immagine it is also hard living alone and caring for a DMD
son.  When they are older they may not be able to get to the phone for
help if the single parent would seriously injure theirself.  I used to
leave Mike alone for a hour or two, but now I am not sure he could get
to the phone.  Yesterday I had to get a package to the post office, I
let him alone and was very worried if something would have happened to
me when would someone discover he was alone.  He was at the computer so
he could have emailed his bother and others to call 911 for him. His
phone was also next to him.  I didn't think much of it until I left
than I began to worry.  Wasn't going that long but suppose I would have
had a accident.
Arlene







Yahoo! Groups Links

I agree with you Adele, I have been around long enough to see if it
makes a difference, and it does.  I am not saying go to the gym and
do hard exercises, just normal things like walking with a friend,
doing little chores to make them feel needed etc.  Last winter Mike
didn't go out as much as he had more trouble using the chair in the
cold. In the spring when I took him for a check up he couldn't hardly
drive.  I told him he didn't hardly get any exercise driving all
winter.  Fortunately he worked at driving up and down the driveway
and did get back to driving.  This winter I noticed he has been
driving around the house, going in his bathroom circling around and
up the hall.  He was also going in the basement where there is more
room and driving.  He did not loose control of the chair this winter,
and has been in the driveway every day it is warm enough.  Exercise
does help. On my goat website you can see him a couple years ago in
the driveway.  Click family on the left. This is a long driveway and
he had to walk up and down to catch the school bus.
http://www.geocities.com/breezytimber/breezy.html
Arlene

--- In MD-List@yahoogroups.com, "Adele" <jasona65@c...> wrote:
> Welcome to the list.  It's good to see grandparents getting
involved.
>
> I'm Adele and my son Jason is now 20 and has DMD.
>
> It has been my experience that any type of exercise is better than
nothing
> at all.  I started thinking like this after I had gotten Jason in
the first
> study of Gentimicin that was conducted at Columbia University about
12 years
> ago.  The study had 20 boys, 10 got the drug and 10 didn't.  At the
end of
> the 3 week study, all 20 of the boys showed marked improvement in
what they
> could do and how long they could do it.  When we returned home and
to
> school, everybody could see a difference in what Jason was able and
willing
> to do.  The one item that both groups of boys had was intense
physical
> therapy.
>
> From that point, I have lived with the motto of "Use it, or lose it"
>
> The one thing to remember it that a good quality of life is what we
strive
> to give our kids. A child that see other kids doing things and they
can't,
> how is that going to effect they mental development?
>
> In the course of his life, Jason has been involved in baseball,
swimming,
> karate, boys scouts, Civil Air patrol, and ROTC in High school.
Now Jason
> is a wheelchair athlete.  He plays hockey and football.  He is an
advent on
> line gamer and spends most of his time doing that, when he's not
playing
> football or Hockey.
>
> There is a difference of opinions as to whether exercise is good or
not.
> Some say that by using the muscles, you shorten the overall life
expectancy
> of the muscles. Others believe that by doing some exercise, to
prolong the
> quality of that muscle, to a point.  My own experience with Jason
is he's
> now 20, has a good heart and lungs, and he's happy.  That's the
bottom line.
>
> Good luck and we hope to hear more from you about your grandson,
and hope to
> see mom and dad on the list.
>
> Adele
>
> -----Original Message-----
> From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
Behalf Of
> Tony Herrera
> Sent: Friday, April 29, 2005 12:08 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] Any opinions on the role of exersize?
>
> Hello list members,
>
> I joined about 8 months or so ago because I wanted to
> get a handle on our grandson who has DMD.  He is now 7
> years old and going to school.  Our son is of the
> opinion that regardless of what efforts he makes
> provide our grandson exercize, he will deteriorate
> anyway.  Our son lives a sedentary life style as it
> is.  They will sit for hours and watch movies and TV
> as a main form or recreation.
>
> My wife and I believe that regardless of that reality,
> exersize and good nutrion play an important role in
> his getting the most out of his little body's
> abilities.  Our grandson will get stiff and sore
> muscles just with normal walking and climbing stairs
> and he gets frequent massages and stretches to help
> limber him up.
>
> Any thouhts on the role of exercize?  What about
> vitamins and diet?  Any feedback is welcome.
>
> Tony
>
>
>
>
> __________________________________________________
> Do You Yahoo!?
> Tired of spam?  Yahoo! Mail has the best spam protection around
> http://mail.yahoo.com
>
>
>
>
> Yahoo! Groups Links

I would immagine it is also hard living alone and caring for a DMD
son.  When they are older they may not be able to get to the phone for
help if the single parent would seriously injure theirself.  I used to
leave Mike alone for a hour or two, but now I am not sure he could get
to the phone.  Yesterday I had to get a package to the post office, I
let him alone and was very worried if something would have happened to
me when would someone discover he was alone.  He was at the computer so
he could have emailed his bother and others to call 911 for him. His
phone was also next to him.  I didn't think much of it until I left
than I began to worry.  Wasn't going that long but suppose I would have
had a accident.
Arlene

Yes, I read the article in the Sun Paper.  I wrote a response to the article
and they said they were going to print the letter,  I never did see it.

Adele

-----Original Message-----
From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of
Arlene
Sent: Friday, April 29, 2005 2:53 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] Re: Good test results today

It would be nice if they would have a good group home with several
nurses that would handle 3 or 4 adults.  And supervised frequently.
A friend on mine has a son with CP and she is trying to get him in a
group home in Philadelphia that only takes physical challanged
people, not mental challanged. He was in a regular group home and
wanted to go back home, was unhappy.  Did you see the article in the
Sun paper a week or so ago?  It ran about 4 days, it was about the
poor care in group homes in Maryland.
Arlene

--- In MD-List@yahoogroups.com, "Pichaske, Marie" <mpichaske@c...>
wrote:
> that makes sense - kind of like 'pass it on'. We'd have to get a
bigger
> first floor!
> Marie
>
> ________________________________
>
> From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
Behalf
> Of Adele
> Sent: Thursday, April 28, 2005 7:58 PM
> To: MD-List@yahoogroups.com
> Subject: RE: [MD-List] Re: Good test results today
>
>
>
> Those are the things I worry about also.  Jason could out live me.
You
> know what I would like to see, other familes in our DMD community
that
> would be willing to take care of our kids if they out live us.  Who
> better than someone who already know about DMD to care for some one
> else.  I know, I would be very willing to care for either Mike or
Petey
> in that case.  It's not like at this point it's any harder to care
for
> one as it is for two.
>
>
>
> Am I crazy or not?
>
>
>
> Adele
>
>
>
> ________________________________
>
> From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
Behalf
> Of Pichaske, Marie
> Sent: Thursday, April 28, 2005 7:39 PM
> To: MD-List@yahoogroups.com
> Subject: RE: [MD-List] Re: Good test results today
>
>
>
> Who would have ever thought that we would worry about that? Petey
has
> his sisters and my sisters, for that matter.
>
> I'm glad I know you. You inspire me.
>
> Marie
>
>
>
> ________________________________
>
> From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
Behalf
> Of Arlene
> Sent: Thursday, April 28, 2005 7:38 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] Re: Good test results today
>
> He is getting up there.  Now I can worry  if he out last me  what
> will happen to him.
> Arlene
>
> --- In MD-List@yahoogroups.com, "Pichaske, Marie" <mpichaske@c...>
> wrote:
> > Wow - that's awesome Arlene - really. Happy Birthday Mike!
> > Marie
> >
> > ________________________________
> >
> > From: MD-List@yahoogroups.com on behalf of Adele
> > Sent: Tue 4/26/2005 4:27 PM
> > To: MD-List@yahoogroups.com
> > Subject: RE: [MD-List] Good test results today
> >
> >
> > So glad to hear that Arlene.  What critical care doctor is he
> seeing.  I was
> > given the name of Dr. Ruzk at Union Memorial.
> > tell Mike a belated Happy birthday.  Jason just had his 20th
> yesterday.
> > Hard to believe it, that I have a 20 year old.  Boy, where did
the
> time go?
> >
> > Adele
> >
> > -----Original Message-----
> > From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
> Behalf Of
> > Arlene
> > Sent: Tuesday, April 26, 2005 4:02 PM
> > To: MD-List@yahoogroups.com
> > Subject: [MD-List] Good test results today
> >
> >
> >
> > Michael my son with DMD turned 37 April 10.  He went to the
> pulmonary &
> > critical care doctor today for a check up and testing, and he is
> the
> > same as last year.  His blood gas test was fine.  The doctor was
> > pleased. Seems when the guys get older they seem to hold their
own.
> I
> > immagine when the blood gas is low he will have to be on a vent.
> We
> > are trying to pospone that as long as possible. He still uses the
> bipap
> > at night.
> > Arlene
> >
> >
> >
> >
> >
> >
> >
> > Yahoo! Groups Links
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > ________________________________
> >
> > Yahoo! Groups Links
> >
> >
> > *      To visit your group on the web, go to:
> >       http://groups.yahoo.com/group/MD-List/
> >
> > *      To unsubscribe from this group, send an email to:
> >       MD-List-unsubscribe@yahoogroups.com <mailto:MD-List-
> unsubscribe@yahoogroups.com?subject=Unsubscribe>
> >
> > *      Your use of Yahoo! Groups is subject to the Yahoo! Terms
of
> Service <http://docs.yahoo.com/info/terms/> .
>
>
>
>
>
>
>
> ________________________________
>
> Yahoo! Groups Links
>
>
> * To visit your group on the web, go to:
>  http://groups.yahoo.com/group/MD-List/
>
> * To unsubscribe from this group, send an email to:
>  MD-List-unsubscribe@yahoogroups.com
> <mailto:MD-List-unsubscribe@yahoogroups.com?subject=Unsubscribe>
>
> * Your use of Yahoo! Groups is subject to the Yahoo! Terms of
> Service <http://docs.yahoo.com/info/terms/> .







Yahoo! Groups Links

Another excellent exercise is singing or playing an instrument requiring
good respiratory strength.  The latest Quest magazine from MDA has a 5-6
page article on how and why singing helps.  My younger son is a singer
and his respiratory function has been staying at a better level (slower
progression) than was was expected for DMD.  (Unfortunately, the issue
is not online yet, but it should be soon at www.mdausa.org

Andrea Gapko, Director
Educational Support Services
and Academic Skills Center
University of Wisconsin--Eau Claire
Eau Claire, WI  54702-4004
715-836-3717


-----Original Message-----
From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com]On Behalf
Of Adele
Sent: Friday, April 29, 2005 11:44 AM
To: MD-List@yahoogroups.com
Subject: RE: [MD-List] Any opinions on the role of exersize?


Welcome to the list.  It's good to see grandparents getting involved.

I'm Adele and my son Jason is now 20 and has DMD.

It has been my experience that any type of exercise is better than
nothing
at all.  I started thinking like this after I had gotten Jason in the
first
study of Gentimicin that was conducted at Columbia University about 12
years
ago.  The study had 20 boys, 10 got the drug and 10 didn't.  At the end
of
the 3 week study, all 20 of the boys showed marked improvement in what
they
could do and how long they could do it.  When we returned home and to
school, everybody could see a difference in what Jason was able and
willing
to do.  The one item that both groups of boys had was intense physical
therapy.

From that point, I have lived with the motto of "Use it, or lose it"

The one thing to remember it that a good quality of life is what we
strive
to give our kids. A child that see other kids doing things and they
can't,
how is that going to effect they mental development?

In the course of his life, Jason has been involved in baseball,
swimming,
karate, boys scouts, Civil Air patrol, and ROTC in High school.  Now
Jason
is a wheelchair athlete.  He plays hockey and football.  He is an advent
on
line gamer and spends most of his time doing that, when he's not playing
football or Hockey.

There is a difference of opinions as to whether exercise is good or not.
Some say that by using the muscles, you shorten the overall life
expectancy
of the muscles. Others believe that by doing some exercise, to prolong
the
quality of that muscle, to a point.  My own experience with Jason is
he's
now 20, has a good heart and lungs, and he's happy.  That's the bottom
line.

Good luck and we hope to hear more from you about your grandson, and
hope to
see mom and dad on the list.

Adele

-----Original Message-----
From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf
Of
Tony Herrera
Sent: Friday, April 29, 2005 12:08 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] Any opinions on the role of exersize?

Hello list members,

I joined about 8 months or so ago because I wanted to
get a handle on our grandson who has DMD.  He is now 7
years old and going to school.  Our son is of the
opinion that regardless of what efforts he makes
provide our grandson exercize, he will deteriorate
anyway.  Our son lives a sedentary life style as it
is.  They will sit for hours and watch movies and TV
as a main form or recreation.

My wife and I believe that regardless of that reality,
exersize and good nutrion play an important role in
his getting the most out of his little body's
abilities.  Our grandson will get stiff and sore
muscles just with normal walking and climbing stairs
and he gets frequent massages and stretches to help
limber him up.

Any thouhts on the role of exercize?  What about
vitamins and diet?  Any feedback is welcome.

Tony




__________________________________________________
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No one should exercise until they are exhausted.  I have to have my
knee operated on May 5 , for a torn cartlidge.  I noticed when
sitting around I feel tired.  I have been helping my husband in the
yard and feel much better once I got moving. We live on a small farm,
if I get up and feel a little lazy, and don't get busy, I really feel
tired.  However living here we do get exhausted but really
shouldn't.  However my son always done what he could with out getting
exhausted. Once they start falling frequently it is time to stop
walking. Mike didn't go in a wheel chair all the time, he did it
gradually.  He would walk short distance.  His photo is on our goat
website, under family, he was 13 on the one photo. In the wheel chair
that was only a few years ago.
Arlene
http://www.geocities.com/breezytimber/breezy.html

--- In MD-List@yahoogroups.com, knuckles 145 <knuckles145@g...> wrote:
> I think there is a difference between "body building" and "use it or
> lose it".  For my son it was more a matter of lose of sense of
balance
> when he stopped walking.  and he still LOVED playing around in the
> pool, long after he lost the ability to walk.
>
> PT really seems to make a big difference.  but as for other
exercise,
> I would go by what he can do without being exhausted.
>
> Beth M.
>
> On 4/29/05, Adele <jasona65@c...> wrote:
> > Welcome to the list.  It's good to see grandparents getting
involved.
> >
> > I'm Adele and my son Jason is now 20 and has DMD.
> >
> > It has been my experience that any type of exercise is better
than nothing
> > at all.  I started thinking like this after I had gotten Jason in
the first
> > study of Gentimicin that was conducted at Columbia University
about 12 years
> > ago.  The study had 20 boys, 10 got the drug and 10 didn't.  At
the end of
> > the 3 week study, all 20 of the boys showed marked improvement in
what they
> > could do and how long they could do it.  When we returned home
and to
> > school, everybody could see a difference in what Jason was able
and willing
> > to do.  The one item that both groups of boys had was intense
physical
> > therapy.
> >
> > From that point, I have lived with the motto of "Use it, or lose
it"
> >
> > The one thing to remember it that a good quality of life is what
we strive
> > to give our kids. A child that see other kids doing things and
they can't,
> > how is that going to effect they mental development?
> >
> > In the course of his life, Jason has been involved in baseball,
swimming,
> > karate, boys scouts, Civil Air patrol, and ROTC in High school.
Now Jason
> > is a wheelchair athlete.  He plays hockey and football.  He is an
advent on
> > line gamer and spends most of his time doing that, when he's not
playing
> > football or Hockey.
> >
> > There is a difference of opinions as to whether exercise is good
or not.
> > Some say that by using the muscles, you shorten the overall life
expectancy
> > of the muscles. Others believe that by doing some exercise, to
prolong the
> > quality of that muscle, to a point.  My own experience with Jason
is he's
> > now 20, has a good heart and lungs, and he's happy.  That's the
bottom line.
> >
> > Good luck and we hope to hear more from you about your grandson,
and hope to
> > see mom and dad on the list.
> >
> > Adele
> >
> > -----Original Message-----
> > From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
Behalf Of
> > Tony Herrera
> > Sent: Friday, April 29, 2005 12:08 PM
> > To: MD-List@yahoogroups.com
> > Subject: [MD-List] Any opinions on the role of exersize?
> >
> > Hello list members,
> >
> > I joined about 8 months or so ago because I wanted to
> > get a handle on our grandson who has DMD.  He is now 7
> > years old and going to school.  Our son is of the
> > opinion that regardless of what efforts he makes
> > provide our grandson exercize, he will deteriorate
> > anyway.  Our son lives a sedentary life style as it
> > is.  They will sit for hours and watch movies and TV
> > as a main form or recreation.
> >
> > My wife and I believe that regardless of that reality,
> > exersize and good nutrion play an important role in
> > his getting the most out of his little body's
> > abilities.  Our grandson will get stiff and sore
> > muscles just with normal walking and climbing stairs
> > and he gets frequent massages and stretches to help
> > limber him up.
> >
> > Any thouhts on the role of exercize?  What about
> > vitamins and diet?  Any feedback is welcome.
> >
> > Tony
> >
> > __________________________________________________

Adele,
You are going to find that with any of them.  None of the doctors
seem to know what to do with our boys. They have different opinions.
Some are recommending bi paps young, our doctor and Hopkins years ago
didn't. I do have Mike carry papers from Dr. Bach I copied from his
site.  You have to find a hospital that you think will work for you,
and if it happens somehow take him to the hospital you want, that's
what I did with Mike, my other son a EMT, positioned his leg and I
drove him to Good Sam myself, this was the second break when the guy
let him fall out of the chair. Before that, when the caregiver let
him fall out of the chair, the ambulance took him to Upper Chesapeak
and they didn't know what to do, they sent him to Hopkins. With
pneumonia they took him to GBMC, they did not do a good job with him,
sent him home, he relapsed wasn't even over it, I made arrangements
with a pulmonary doctor to meet us in the emergency room at Good Sam,
they were much better. Make sure the hospital that works for him,
your pulmonary doctor can practice in. You have to make the decisions
yourself.  Mike said last month he thinks he should cut back on
prednisone, so we did on our own.  When we went to the family doctor
we asked for a smaller dose tablet, she said nothing, but she thought
that was good to cut back. She didn't say you can't do that on your
own, she knows we know how to cut back. I am not against prednisone,
but it isn't helping as much as it did as far as strength, at 37 you
can't expect as much.  I feel it still helps his pulmonary and was
told by doctors it has. He has been on it 24 years. We highly
recommend prednison if the person follows the rules, can't gain
weight, omitting salt is the hardest.  As soon as I give Mike some
snacks he will puff up. Since I cook and bake a lot we don't find it
a problem.  I don't like to eat out or like processed foods.
Unfortunately when you look at the sodium in food, none of us should
be eating all that salt. Mike started at 13 on 100 mg of prednisone
every other day, months later we kept cutting back until we found the
amount that worked for him, that was 40mg every other day. Now after
cutting back 5 mg for a month, then another 5 mg, he is on 30 and
seems fine. I don't think he wants to go off it completely.  We may
still cut back some. I do not recommend anyone doing this with out
their doctor knowledge.
Arlene

--- In MD-List@yahoogroups.com, "Adele" <jasona65@c...> wrote:
> Yes, we saw Dr Wagner, We like her.   Jason started with Dr Judge,
cardio.
> He good too.  The Beards see Dr. Ruzk at Union memorial, he's also a
> critical care doctor.  That the one things I'm concerned about
right now.
> When Jason gets pneumonia, what do I do?  The primary care doctor
we see
> knows nothing about DMD or MD for that matter.  I'm sure that
Howard County
> General don't know how to treat.
>
> Adele
>
> -----Original Message-----
> From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
Behalf Of
> Arlene
> Sent: Thursday, April 28, 2005 7:36 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] Re: Good test results today
>
> Mike sees Dr. Steiner at Good Sam.  The Bailey's used to see a
doctor
> in his group.  He is Pulmonary and Critical Care.  When Mike had
> pneumonia anout 8 years ago his group took care of him. We still
see
> Dr. Wagner but I usually pick my own doctors, he also likes Dr.
> Strahan at Hopkins the cardiologist. We really need a good
internist
> for a physical, our family doctor does not give him a good
physical,
> she does nothing.  However she is good at giving prescriptions and
> signing papers for us.
> Arlene
> Arlene
>
> --- In MD-List@yahoogroups.com, "Adele" <jasona65@c...> wrote:
> > So glad to hear that Arlene.  What critical care doctor is he
> seeing.  I was
> > given the name of Dr. Ruzk at Union Memorial.
> > tell Mike a belated Happy birthday.  Jason just had his 20th
> yesterday.
> > Hard to believe it, that I have a 20 year old.  Boy, where did
the
> time go?
> >
> > Adele
> >
> > -----Original Message-----
> > From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
> Behalf Of
> > Arlene
> > Sent: Tuesday, April 26, 2005 4:02 PM
> > To: MD-List@yahoogroups.com
> > Subject: [MD-List] Good test results today
> >
> >
> >
> > Michael my son with DMD turned 37 April 10.  He went to the
> pulmonary &
> > critical care doctor today for a check up and testing, and he is
> the
> > same as last year.  His blood gas test was fine.  The doctor was
> > pleased. Seems when the guys get older they seem to hold their
own.
> I
> > immagine when the blood gas is low he will have to be on a vent.
> We
> > are trying to pospone that as long as possible. He still uses the
> bipap
> > at night.
> > Arlene
> >
> >
> >
> >
> >
> >
> >
> > Yahoo! Groups Links
>
>
>
>
>
>
>
> Yahoo! Groups Links

It would be nice if they would have a good group home with several
nurses that would handle 3 or 4 adults.  And supervised frequently.
A friend on mine has a son with CP and she is trying to get him in a
group home in Philadelphia that only takes physical challanged
people, not mental challanged. He was in a regular group home and
wanted to go back home, was unhappy.  Did you see the article in the
Sun paper a week or so ago?  It ran about 4 days, it was about the
poor care in group homes in Maryland.
Arlene

--- In MD-List@yahoogroups.com, "Pichaske, Marie" <mpichaske@c...>
wrote:
> that makes sense - kind of like 'pass it on'. We'd have to get a
bigger
> first floor!
> Marie
>
> ________________________________
>
> From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
Behalf
> Of Adele
> Sent: Thursday, April 28, 2005 7:58 PM
> To: MD-List@yahoogroups.com
> Subject: RE: [MD-List] Re: Good test results today
>
>
>
> Those are the things I worry about also.  Jason could out live me.
You
> know what I would like to see, other familes in our DMD community
that
> would be willing to take care of our kids if they out live us.  Who
> better than someone who already know about DMD to care for some one
> else.  I know, I would be very willing to care for either Mike or
Petey
> in that case.  It's not like at this point it's any harder to care
for
> one as it is for two.
>
>
>
> Am I crazy or not?
>
>
>
> Adele
>
>
>
> ________________________________
>
> From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
Behalf
> Of Pichaske, Marie
> Sent: Thursday, April 28, 2005 7:39 PM
> To: MD-List@yahoogroups.com
> Subject: RE: [MD-List] Re: Good test results today
>
>
>
> Who would have ever thought that we would worry about that? Petey
has
> his sisters and my sisters, for that matter.
>
> I'm glad I know you. You inspire me.
>
> Marie
>
>
>
> ________________________________
>
> From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
Behalf
> Of Arlene
> Sent: Thursday, April 28, 2005 7:38 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] Re: Good test results today
>
> He is getting up there.  Now I can worry  if he out last me  what
> will happen to him.
> Arlene
>
> --- In MD-List@yahoogroups.com, "Pichaske, Marie" <mpichaske@c...>
> wrote:
> > Wow - that's awesome Arlene - really. Happy Birthday Mike!
> > Marie
> >
> > ________________________________
> >
> > From: MD-List@yahoogroups.com on behalf of Adele
> > Sent: Tue 4/26/2005 4:27 PM
> > To: MD-List@yahoogroups.com
> > Subject: RE: [MD-List] Good test results today
> >
> >
> > So glad to hear that Arlene.  What critical care doctor is he
> seeing.  I was
> > given the name of Dr. Ruzk at Union Memorial.
> > tell Mike a belated Happy birthday.  Jason just had his 20th
> yesterday.
> > Hard to believe it, that I have a 20 year old.  Boy, where did
the
> time go?
> >
> > Adele
> >
> > -----Original Message-----
> > From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
> Behalf Of
> > Arlene
> > Sent: Tuesday, April 26, 2005 4:02 PM
> > To: MD-List@yahoogroups.com
> > Subject: [MD-List] Good test results today
> >
> >
> >
> > Michael my son with DMD turned 37 April 10.  He went to the
> pulmonary &
> > critical care doctor today for a check up and testing, and he is
> the
> > same as last year.  His blood gas test was fine.  The doctor was
> > pleased. Seems when the guys get older they seem to hold their
own.
> I
> > immagine when the blood gas is low he will have to be on a vent.
> We
> > are trying to pospone that as long as possible. He still uses the
> bipap
> > at night.
> > Arlene
> >
> >
> >
> >
> >
> >
> >
> > Yahoo! Groups Links
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > ________________________________
> >
> > Yahoo! Groups Links
> >
> >
> > *      To visit your group on the web, go to:
> >       http://groups.yahoo.com/group/MD-List/
> >
> > *      To unsubscribe from this group, send an email to:
> >       MD-List-unsubscribe@yahoogroups.com <mailto:MD-List-
> unsubscribe@yahoogroups.com?subject=Unsubscribe>
> >
> > *      Your use of Yahoo! Groups is subject to the Yahoo! Terms
of
> Service <http://docs.yahoo.com/info/terms/> .
>
>
>
>
>
>
>
> ________________________________
>
> Yahoo! Groups Links
>
>
> * To visit your group on the web, go to:
>  http://groups.yahoo.com/group/MD-List/
>
> * To unsubscribe from this group, send an email to:
>  MD-List-unsubscribe@yahoogroups.com
> <mailto:MD-List-unsubscribe@yahoogroups.com?subject=Unsubscribe>
>
> * Your use of Yahoo! Groups is subject to the Yahoo! Terms of
> Service <http://docs.yahoo.com/info/terms/> .

I think there is a difference between "body building" and "use it or
lose it".  For my son it was more a matter of lose of sense of balance
when he stopped walking.  and he still LOVED playing around in the
pool, long after he lost the ability to walk.

PT really seems to make a big difference.  but as for other exercise,
I would go by what he can do without being exhausted.

Beth M.

On 4/29/05, Adele <jasona65@...> wrote:
> Welcome to the list.  It's good to see grandparents getting involved.
>
> I'm Adele and my son Jason is now 20 and has DMD.
>
> It has been my experience that any type of exercise is better than nothing
> at all.  I started thinking like this after I had gotten Jason in the first
> study of Gentimicin that was conducted at Columbia University about 12 years
> ago.  The study had 20 boys, 10 got the drug and 10 didn't.  At the end of
> the 3 week study, all 20 of the boys showed marked improvement in what they
> could do and how long they could do it.  When we returned home and to
> school, everybody could see a difference in what Jason was able and willing
> to do.  The one item that both groups of boys had was intense physical
> therapy.
>
> From that point, I have lived with the motto of "Use it, or lose it"
>
> The one thing to remember it that a good quality of life is what we strive
> to give our kids. A child that see other kids doing things and they can't,
> how is that going to effect they mental development?
>
> In the course of his life, Jason has been involved in baseball, swimming,
> karate, boys scouts, Civil Air patrol, and ROTC in High school.  Now Jason
> is a wheelchair athlete.  He plays hockey and football.  He is an advent on
> line gamer and spends most of his time doing that, when he's not playing
> football or Hockey.
>
> There is a difference of opinions as to whether exercise is good or not.
> Some say that by using the muscles, you shorten the overall life expectancy
> of the muscles. Others believe that by doing some exercise, to prolong the
> quality of that muscle, to a point.  My own experience with Jason is he's
> now 20, has a good heart and lungs, and he's happy.  That's the bottom line.
>
> Good luck and we hope to hear more from you about your grandson, and hope to
> see mom and dad on the list.
>
> Adele
>
> -----Original Message-----
> From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of
> Tony Herrera
> Sent: Friday, April 29, 2005 12:08 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] Any opinions on the role of exersize?
>
> Hello list members,
>
> I joined about 8 months or so ago because I wanted to
> get a handle on our grandson who has DMD.  He is now 7
> years old and going to school.  Our son is of the
> opinion that regardless of what efforts he makes
> provide our grandson exercize, he will deteriorate
> anyway.  Our son lives a sedentary life style as it
> is.  They will sit for hours and watch movies and TV
> as a main form or recreation.
>
> My wife and I believe that regardless of that reality,
> exersize and good nutrion play an important role in
> his getting the most out of his little body's
> abilities.  Our grandson will get stiff and sore
> muscles just with normal walking and climbing stairs
> and he gets frequent massages and stretches to help
> limber him up.
>
> Any thouhts on the role of exercize?  What about
> vitamins and diet?  Any feedback is welcome.
>
> Tony
>
> __________________________________________________

Welcome to the list.  It's good to see grandparents getting involved.

I'm Adele and my son Jason is now 20 and has DMD.

It has been my experience that any type of exercise is better than nothing
at all.  I started thinking like this after I had gotten Jason in the first
study of Gentimicin that was conducted at Columbia University about 12 years
ago.  The study had 20 boys, 10 got the drug and 10 didn't.  At the end of
the 3 week study, all 20 of the boys showed marked improvement in what they
could do and how long they could do it.  When we returned home and to
school, everybody could see a difference in what Jason was able and willing
to do.  The one item that both groups of boys had was intense physical
therapy.

From that point, I have lived with the motto of "Use it, or lose it"

The one thing to remember it that a good quality of life is what we strive
to give our kids. A child that see other kids doing things and they can't,
how is that going to effect they mental development?

In the course of his life, Jason has been involved in baseball, swimming,
karate, boys scouts, Civil Air patrol, and ROTC in High school.  Now Jason
is a wheelchair athlete.  He plays hockey and football.  He is an advent on
line gamer and spends most of his time doing that, when he's not playing
football or Hockey.

There is a difference of opinions as to whether exercise is good or not.
Some say that by using the muscles, you shorten the overall life expectancy
of the muscles. Others believe that by doing some exercise, to prolong the
quality of that muscle, to a point.  My own experience with Jason is he's
now 20, has a good heart and lungs, and he's happy.  That's the bottom line.

Good luck and we hope to hear more from you about your grandson, and hope to
see mom and dad on the list.

Adele

-----Original Message-----
From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of
Tony Herrera
Sent: Friday, April 29, 2005 12:08 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] Any opinions on the role of exersize?

Hello list members,

I joined about 8 months or so ago because I wanted to
get a handle on our grandson who has DMD.  He is now 7
years old and going to school.  Our son is of the
opinion that regardless of what efforts he makes
provide our grandson exercize, he will deteriorate
anyway.  Our son lives a sedentary life style as it
is.  They will sit for hours and watch movies and TV
as a main form or recreation.

My wife and I believe that regardless of that reality,
exersize and good nutrion play an important role in
his getting the most out of his little body's
abilities.  Our grandson will get stiff and sore
muscles just with normal walking and climbing stairs
and he gets frequent massages and stretches to help
limber him up.

Any thouhts on the role of exercize?  What about
vitamins and diet?  Any feedback is welcome.

Tony




__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com




Yahoo! Groups Links

They are giving him stretches and massages, this is good, physical
excercise can do more damage.  He should do physical excercise only
if he is capable.  And he should only do what he can not be pushed to
more than he can handle.  Yes, there are some suppliments he should
be taking, good diet is important, especially if he's on a
steroid, like Prednisone or deflazacort.  If you want to know more go
on to these websites: parentprojectmd.org or mdausa.org, you can get
a lot of good information on those websites.

--- In MD-List@yahoogroups.com, Tony Herrera <therrera1550@y...>
wrote:
> Hello list members,
>
> I joined about 8 months or so ago because I wanted to
> get a handle on our grandson who has DMD.  He is now 7
> years old and going to school.  Our son is of the
> opinion that regardless of what efforts he makes
> provide our grandson exercize, he will deteriorate
> anyway.  Our son lives a sedentary life style as it
> is.  They will sit for hours and watch movies and TV
> as a main form or recreation.
>
> My wife and I believe that regardless of that reality,
> exersize and good nutrion play an important role in
> his getting the most out of his little body's
> abilities.  Our grandson will get stiff and sore
> muscles just with normal walking and climbing stairs
> and he gets frequent massages and stretches to help
> limber him up.
>
> Any thouhts on the role of exercize?  What about
> vitamins and diet?  Any feedback is welcome.
>
> Tony
>
>
>
>
> __________________________________________________
> Do You Yahoo!?
> Tired of spam?  Yahoo! Mail has the best spam protection around
> http://mail.yahoo.com

Hello list members,

I joined about 8 months or so ago because I wanted to
get a handle on our grandson who has DMD.  He is now 7
years old and going to school.  Our son is of the
opinion that regardless of what efforts he makes
provide our grandson exercize, he will deteriorate
anyway.  Our son lives a sedentary life style as it
is.  They will sit for hours and watch movies and TV
as a main form or recreation.

My wife and I believe that regardless of that reality,
exersize and good nutrion play an important role in
his getting the most out of his little body's
abilities.  Our grandson will get stiff and sore
muscles just with normal walking and climbing stairs
and he gets frequent massages and stretches to help
limber him up.

Any thouhts on the role of exercize?  What about
vitamins and diet?  Any feedback is welcome.

Tony




__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

Sleep study was done at Good Samaritan Hospital.  He uses a bipap at
night, he has been using that for about 5 years. I asked about
another test and he doesn't think it is necessary. The doctor felt it
would give him more energy during the day and it did.
Arlene

--- In MD-List@yahoogroups.com, AV <raybug10@y...> wrote:
> That is super news Arlene!  Can I ask what tests are done?  Did you
do yearly sleep studies or other tests to determine when to start
using a bipap at night?  I am excited for you that tests are looking
good!
>
> Anneliese
>
> Arlene <breezytimber@y...> wrote:
>
> Michael my son with DMD turned 37 April 10.  He went to the
pulmonary &
> critical care doctor today for a check up and testing, and he is
the
> same as last year.  His blood gas test was fine.  The doctor was
> pleased. Seems when the guys get older they seem to hold their own.
I
> immagine when the blood gas is low he will have to be on a vent.
We
> are trying to pospone that as long as possible. He still uses the
bipap
> at night.
> Arlene
>
>
>
>
>
> ---------------------------------
> Yahoo! Groups Links
>
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Yes, since he was 13, he took 40 mg every other day, now he is down
to 30 mg.  We do know that helped him, we watch his weight and salt.
He has no problem with that as we don't eat junk food. Dr. Bach said
that has helped his respiratory when I talked to him.  His pulmonary
Dr. recommended Advair one puff a day, I emailed Bach and he said
that was ok. We waited as long as we could before we started to use
predisone, but when he started to fall more than we put him on it.
We did push him and he used to push himself to do things.  It is
easier not to push them but they seem to last longer if you do.  It
is really hard when you have to wait when walking through the store
because they are slow.  As I said he pushed himself also.  He is
happy with his health, he is not on a vent yet.  Can use the wheel
chair.  Has friends through email.  Enjoys his 7 yr old nephew.  He
finds things like the other older guys do to entertain themself. He
goes to camp a week each year, not MD camp they don't have it for
guys over 21. He goes to day care 1 or 2 days per week if he wants.
They go on trips once in a while and he likes to get away and see
different people. A guy his age with a heart problem not MD  was
married and started back to day care today, as he was getting bored
home with his wife all day. there are a few people there he enjoys
talking to and playing games and doing crafts with. the staff helps
him with the crafts.
Arlene

--- In MD-List@yahoogroups.com, <hhjgreene@y...> wrote:
> That is Great!  Thanks for sharing!  Did Michael ever take
steroids?  Just wondering...
>
> Holly
>
> Arlene <breezytimber@y...> wrote:
>
> Michael my son with DMD turned 37 April 10.  He went to the
pulmonary &
> critical care doctor today for a check up and testing, and he is
the
> same as last year.  His blood gas test was fine.  The doctor was
> pleased. Seems when the guys get older they seem to hold their own.
I
> immagine when the blood gas is low he will have to be on a vent.
We
> are trying to pospone that as long as possible. He still uses the
bipap
> at night.
> Arlene
>
>
>
>
>
> ---------------------------------
> Yahoo! Groups Links
>
>    To visit your group on the web, go to:
> http://groups.yahoo.com/group/MD-List/
>
>    To unsubscribe from this group, send an email to:
> MD-List-unsubscribe@yahoogroups.com
>
>    Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>
> __________________________________________________
> Do You Yahoo!?
> Tired of spam?  Yahoo! Mail has the best spam protection around
> http://mail.yahoo.com

Yes, we saw Dr Wagner, We like her.   Jason started with Dr Judge, cardio.
He good too.  The Beards see Dr. Ruzk at Union memorial, he's also a
critical care doctor.  That the one things I'm concerned about right now.
When Jason gets pneumonia, what do I do?  The primary care doctor we see
knows nothing about DMD or MD for that matter.  I'm sure that Howard County
General don't know how to treat.

Adele

-----Original Message-----
From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of
Arlene
Sent: Thursday, April 28, 2005 7:36 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] Re: Good test results today

Mike sees Dr. Steiner at Good Sam.  The Bailey's used to see a doctor
in his group.  He is Pulmonary and Critical Care.  When Mike had
pneumonia anout 8 years ago his group took care of him. We still see
Dr. Wagner but I usually pick my own doctors, he also likes Dr.
Strahan at Hopkins the cardiologist. We really need a good internist
for a physical, our family doctor does not give him a good physical,
she does nothing.  However she is good at giving prescriptions and
signing papers for us.
Arlene
Arlene

--- In MD-List@yahoogroups.com, "Adele" <jasona65@c...> wrote:
> So glad to hear that Arlene.  What critical care doctor is he
seeing.  I was
> given the name of Dr. Ruzk at Union Memorial.
> tell Mike a belated Happy birthday.  Jason just had his 20th
yesterday.
> Hard to believe it, that I have a 20 year old.  Boy, where did the
time go?
>
> Adele
>
> -----Original Message-----
> From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
Behalf Of
> Arlene
> Sent: Tuesday, April 26, 2005 4:02 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] Good test results today
>
>
>
> Michael my son with DMD turned 37 April 10.  He went to the
pulmonary &
> critical care doctor today for a check up and testing, and he is
the
> same as last year.  His blood gas test was fine.  The doctor was
> pleased. Seems when the guys get older they seem to hold their own.
I
> immagine when the blood gas is low he will have to be on a vent.
We
> are trying to pospone that as long as possible. He still uses the
bipap
> at night.
> Arlene
>
>
>
>
>
>
>
> Yahoo! Groups Links







Yahoo! Groups Links

He is getting up there.  Now I can worry  if he out last me  what
will happen to him.
Arlene

--- In MD-List@yahoogroups.com, "Pichaske, Marie" <mpichaske@c...>
wrote:
> Wow - that's awesome Arlene - really. Happy Birthday Mike!
> Marie
>
> ________________________________
>
> From: MD-List@yahoogroups.com on behalf of Adele
> Sent: Tue 4/26/2005 4:27 PM
> To: MD-List@yahoogroups.com
> Subject: RE: [MD-List] Good test results today
>
>
> So glad to hear that Arlene.  What critical care doctor is he
seeing.  I was
> given the name of Dr. Ruzk at Union Memorial.
> tell Mike a belated Happy birthday.  Jason just had his 20th
yesterday.
> Hard to believe it, that I have a 20 year old.  Boy, where did the
time go?
>
> Adele
>
> -----Original Message-----
> From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
Behalf Of
> Arlene
> Sent: Tuesday, April 26, 2005 4:02 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] Good test results today
>
>
>
> Michael my son with DMD turned 37 April 10.  He went to the
pulmonary &
> critical care doctor today for a check up and testing, and he is
the
> same as last year.  His blood gas test was fine.  The doctor was
> pleased. Seems when the guys get older they seem to hold their own.
I
> immagine when the blood gas is low he will have to be on a vent.
We
> are trying to pospone that as long as possible. He still uses the
bipap
> at night.
> Arlene
>
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>
>
>
>
>
> ________________________________
>
> Yahoo! Groups Links
>
>
> * To visit your group on the web, go to:
>  http://groups.yahoo.com/group/MD-List/
>
> * To unsubscribe from this group, send an email to:
>  MD-List-unsubscribe@yahoogroups.com <mailto:MD-List-
unsubscribe@yahoogroups.com?subject=Unsubscribe>
>
> * Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service <http://docs.yahoo.com/info/terms/> .

Mike sees Dr. Steiner at Good Sam.  The Bailey's used to see a doctor
in his group.  He is Pulmonary and Critical Care.  When Mike had
pneumonia anout 8 years ago his group took care of him. We still see
Dr. Wagner but I usually pick my own doctors, he also likes Dr.
Strahan at Hopkins the cardiologist. We really need a good internist
for a physical, our family doctor does not give him a good physical,
she does nothing.  However she is good at giving prescriptions and
signing papers for us.
Arlene
Arlene

--- In MD-List@yahoogroups.com, "Adele" <jasona65@c...> wrote:
> So glad to hear that Arlene.  What critical care doctor is he
seeing.  I was
> given the name of Dr. Ruzk at Union Memorial.
> tell Mike a belated Happy birthday.  Jason just had his 20th
yesterday.
> Hard to believe it, that I have a 20 year old.  Boy, where did the
time go?
>
> Adele
>
> -----Original Message-----
> From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On
Behalf Of
> Arlene
> Sent: Tuesday, April 26, 2005 4:02 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] Good test results today
>
>
>
> Michael my son with DMD turned 37 April 10.  He went to the
pulmonary &
> critical care doctor today for a check up and testing, and he is
the
> same as last year.  His blood gas test was fine.  The doctor was
> pleased. Seems when the guys get older they seem to hold their own.
I
> immagine when the blood gas is low he will have to be on a vent.
We
> are trying to pospone that as long as possible. He still uses the
bipap
> at night.
> Arlene
>
>
>
>
>
>
>
> Yahoo! Groups Links

Sounds like you son  is doing good.  As long as he can do things let
him, once they stop they can never do it again.  You son has done
well with walking, they can only do it so long. Anyone in a chair as
they age has problems with osteoporosis, so keep that in mind and
start giving him calcium and multi vitamins now. My son always got
plenty of exercise, I gave him chores to do, it is better to have
something to do than sit around all day.  He washed the dishes as
long as he could, and had pets to take care.  I always felt I would
rather work doing something constructive than just excerise. Maybe
you can find little chores he can help with. Or a hobby he likes to
do.
Arlene

--- In MD-List@yahoogroups.com, "Mel, Johanna, Ian & Brendan Wright"
<mjib@s...> wrote:
> Thank you for sharing your good news, Arlene.  It helps to bolster
my hopes
> for my Ian Michael, now nearly 14 and just losing his walking
ability.
>
> Johanna
>
> ----- Original Message -----
> From: "Arlene" <breezytimber@y...>
> To: <MD-List@yahoogroups.com>
> Sent: Tuesday, April 26, 2005 1:02 PM
> Subject: [MD-List] Good test results today
>
>
> >
> >
> > Michael my son with DMD turned 37 April 10.  He went to the
pulmonary &
> > critical care doctor today for a check up and testing, and he is
the
> > same as last year.  His blood gas test was fine.  The doctor was
> > pleased. Seems when the guys get older they seem to hold their
own. I
> > immagine when the blood gas is low he will have to be on a vent.
We
> > are trying to pospone that as long as possible. He still uses the
bipap
> > at night.
> > Arlene
> >
> >
> >
> >
> >
> >
> >
> > Yahoo! Groups Links
> >
> >
> >
> >
> >
> >
> >
> >