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#19135 From: Vikki Stefans <vstefans@...>
Date: Wed Nov 1, 2006 11:53 am
Subject: Re: Updated
vstefans
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Chris - just to second what others have said - urgently - you possibly
feel like cr** just because CO2 levels may be getting high. Oxygen alone
DOES NOT fix this, in fact it decreases the respiratory drive and may make
it worse - that's why it is bad. Using a volume vent by mask or anything
that helps your weak breathing muscles move air is very important, and
their strength may even increase a little when they get a part-time rest
with some kind of support. There are a lot of good options - but trying to
treat underventilation with oxygen alone is most definitely not one of
them! If you start on some night time ventilatory support of any kind -
invasive or non-, you may find you don't need anything at all during the
day and you may be asking yourself why you did not start it sooner.

Seriously - get your doc or get someone to help you get your doc to work
on this with you right away. Don't even settle for a next available
appointment in December, you need your CO2 level checked and help for it
as soon as possible.

Vikki Stefans, M.D., pediatric physiatrist (rehab doc for kids) at UAMS
and Arkansas Children's Hospital.  Working Mom of Sarah T. and Michael C.,
and wife of Henry Stefans. Every mom is a working mom!- OK, dads too.

On Sat, 28 Oct 2006, Chris Coulson wrote:

>     I wanted to let you all know that my breathing has got worse to
> where I'm now needing the oxgen not just at night but in the afternoon
> also.  I don't know how much longer I can continue to fight this.
>
>     I'm really geting tired of fighting my MD as well as everythinbg
> else I've got to deal with.  I'm geting to the point of saying to hake
> with this and just give up which sounds alot easier than to keep fighting.

#19134 From: "apelofsky" <apelofsky@...>
Date: Tue Oct 31, 2006 12:49 pm
Subject: http://other-dmd-pathways.blogspot.com 5
apelofsky
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Hi:

Please read my blog. I make a case for anecdotal data which seems to
be ignored by the clinicians and funding agencies. I suggest it is
time to consider these data rather than ignoring them.

Arnold

#19133 From: BracinKnee@...
Date: Tue Oct 31, 2006 12:02 am
Subject: MJ Update - Halloween Update
bshanson68
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Hi everyone:
    Another week has gone by and I am another week closer to the end of the quarter.  My week went fairly well, tired from all the work, but I survived.  It seems unreal that I've been here for 8 weeks and time just flew right past me.
     So, I finished my sociology paper on Monday night.  It wasn't too hard, it was just long.  It was basically 5 papers in one.  Our teacher didn't tell us until Thursday, the 19th, what one paper was about and also gave us the length requirement.  It "needed" to be a minimum of 15 pages.  YIKES!!!  I finished it Monday with a whopping 23 pages.  It looked like a little book because we had to include the articles we got information from.  So, my 4 articles (total about 50 pages) made my project look huge! 
      The rest of the week went flying by.  Thursday, I had a test in sociology and another paper due on affirmative action in sociology.  I also had to write a paper about a monk and a mountain for psychology that he changed his mind and decided we didn't need to write it after all.  Don't you hate that!!!  I also wrote another paper for my service and society class. 
       I had a great weekend.  I spent Saturday with Grandma June.   Sunday, I did not feel well, I thought I was getting sick, but it was only a big old plug.  I did a couple extra treatments during the day yesterday, and today was all better. 
       Today, I ran errands.  I went and picked up the last chapter of Sociology and asked about books for next quarter and can get one next week.  I also got my flu shot today.  They were giving them on campus, so I went and got it done, so I don't have to go to Children's on Wednesday. 
         I only have 4 days left of class, which equals about 6 papers and 1 test left.  I already did my sociology paper that is due Thursday!!!!  Not much else is happening...I did enjoy the 70 degree weather today and was glad I was out since tomorrow it is supposed to rain.  Until later, everyone have a great day, Happy Halloween, and talk to you all later.
 
PS.  The attached picture is me, getting ready for winter, wearing my new hat.
 
MJ
18, SMA Super type I
"People are often unreasonable, illogical, and self-centered;
Forgive them anyway.
If you are kind, people may accuse you of selfish, ulterior motives;
Be kind anyway.
If you are successful, you will win some false friends and some true enemies;
Succeed anyway.
If you are honest and frank, people may cheat you;
Be honest and frank anyway.
What you spend years building, someone could destroy overnight;
Build anyway.
If you find serenity and happiness, they may be jealous;
Be happy anyway.
The good you do today, people will often forget tomorrow;
Do good anyway.
Give the world the best you have and it may just never be enough;
Give the world the best you have anyway.

You see, in the final analysis, it's all between you and God;
It was never between you and them anyway.
" ~Mother Teresa

http://www.caringbridge.com/ny/mjpurk - My Journal

http://www.our-sma-angels.com/Margaret/ - My Original Website


http://www.mjthesmaqueen.com/ - My New Website

http://www.our-sma-angels.com/b4sma/ - My Organization's Site

http://www.caringbridge.org/ny/b4sma/ - My Organization's Update Site

#19132 From: "Arlene " <breezytimber@...>
Date: Sat Oct 28, 2006 11:08 pm
Subject: Re: Updated
breezytimber
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Chris, from what I read people with DMD are not suppose to be on
oxygen to much.  It was something about DMD a disease that causes
the weakness breathing and oxygen is for people who have a
respiratory disease.  I don't know who you can ask about that.  I am
not sure who mentioned their son was put on oxygen and he shouldn't
have.  It is ok at certain times. But not permanent. Are you on a
vent, usually when you have problems breathing they can use the non
invasive vent.  My son uses a bipap at night that really helped.
Arlene

--- In MD-List@yahoogroups.com, "Pichaske, Marie" <mpichaske@...>
wrote:
>
> DEAR CHRIS,
>
> I hate to think of you as so tired.  It must be really hard.
>
> You spoke of needing oxygen at night and now during the day.  Are
you on a respirator? Via trach or non-invasively?
>
> Please take care of yourself and know that I care.
>
> Marie
>
>
> -----Original Message-----
> From: MD-List@yahoogroups.com on behalf of Chris Coulson
> Sent: Sat 10/28/2006 4:15 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] Updated
>
>      I wanted to let you all know that my breathing has got worse
to
> where I'm now needing the oxgen not just at night but in the
afternoon
> also.  I don't know how much longer I can continue to fight this.
>
>      I'm really geting tired of fighting my MD as well as
everythinbg
> else I've got to deal with.  I'm geting to the point of saying to
hake
> with this and just give up which sounds alot easier than to keep
fighting.
>

#19131 From: "Pichaske, Marie" <mpichaske@...>
Date: Sat Oct 28, 2006 9:51 pm
Subject: RE: Updated
mpichaske
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DEAR CHRIS,

I hate to think of you as so tired.  It must be really hard.

You spoke of needing oxygen at night and now during the day.  Are you on a
respirator? Via trach or non-invasively?

Please take care of yourself and know that I care.

Marie


-----Original Message-----
From: MD-List@yahoogroups.com on behalf of Chris Coulson
Sent: Sat 10/28/2006 4:15 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] Updated

      I wanted to let you all know that my breathing has got worse to
where I'm now needing the oxgen not just at night but in the afternoon
also.  I don't know how much longer I can continue to fight this.

      I'm really geting tired of fighting my MD as well as everythinbg
else I've got to deal with.  I'm geting to the point of saying to hake
with this and just give up which sounds alot easier than to keep fighting.

#19130 From: "Chris Coulson" <robinc1961@...>
Date: Sat Oct 28, 2006 8:15 pm
Subject: Updated
robinc1961
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I wanted to let you all know that my breathing has got worse to
where I'm now needing the oxgen not just at night but in the afternoon
also.  I don't know how much longer I can continue to fight this.

      I'm really geting tired of fighting my MD as well as everythinbg
else I've got to deal with.  I'm geting to the point of saying to hake
with this and just give up which sounds alot easier than to keep fighting.

#19129 From: JLMcNair1@...
Date: Thu Oct 26, 2006 8:04 pm
Subject: Re: Help for playground equipment funding
jlmcnair1
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Hi,
 
How did this work out?
 
Jennifer
 
In a message dated 10/8/2006 2:43:15 P.M. Eastern Daylight Time, bkwolf@... writes:
Please help us out - Hamburger Helper is sponsoring a Hometown Helper  program where they are donating $15,000 a month to community projects.  My son's elementary school needs some new playground equipment - none of it is really handicap accessible, and it's tough for him to play on the majority of the equipment even though he's still able to get around unassisted.
 
We need supporting comments to help them pick our project to fund - please post a comment and forward this request to help us out!
 
If you have a project to submit, let us know and we can help post comments for your project as well!!!
 
Thank you for your help!
 
Brian & Karen


From: Brian Wolf [mailto:bkwolf@sbcglobal.net]
Sent: Sunday, October 08, 2006 12:24 PM
To: bkwolf@sbcglobal.net
Cc: bkwolf@sbcglobal.net
Subject: Check out this community project

I thought you'd be interested in this request at myhometownhelper.com to help fund a community project.

Sponsored by Hamburger Helper, MyHometownHelper.com is giving away up to $15,000 each month to help fund projects in hometowns all across the country. You can help by simply adding your comments - and support - to this request.

Thanks.

 

#19128 From: "newspirit41" <hope4md@...>
Date: Tue Oct 24, 2006 6:13 pm
Subject: Re: UPDATE, ME
newspirit41
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Robin...make sure the van is actually wheel chair accessible. I had
purchased a 2002 Ford Windstar and thought it would be and come to
find out it was not. It could not have a manual ramp or an electic
lift on the sides and if we used the back, he could not sit in the
chair. it will cost $17k to have the floor lowered which is more than
what the van is worth.  Vocational REhab is going to see if it can be
modified otherwise they will get Tim a new van that has a lift.
fortunatly the supervisor was my case worker and she knows my
condition as well as Tim's and she can help us accomplish this
somehow. She is also helping him with other things for college. In
order for Voc Rehab to start helping your child, I believe he needs
to be 16 yrs old or older. dee



--- In MD-List@yahoogroups.com, "Chris Coulson" <robinc1961@...>
wrote:

  Dear family,
       I've now got a van and am trying to work tings out to get a lift
  or ramp.  It sure works better than the car I had and even looks
beter
  to. Wish me good luck.
               Love Robinc

#19127 From: "kaj48ar" <grandmacat@...>
Date: Sat Oct 21, 2006 11:51 pm
Subject: Re: Spinal Surgery and Depression
kaj48ar
Offline Offline
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Kathy, My grandson has a Jazzy chair which has been good. His problem
was the cover on the joystick came off, causing his hand to come off
and the chair stooped instantly. He was going down a ramp, I am sure
at top speed, and didn't have his seat belt on. It threw him out and
broke both legs.
Kathy, gram to 10 year old DMD








--- In MD-List@yahoogroups.com, Kmmx2@... wrote:
>
> Hope he's not getting an Invacare. I will never own another invacare
power
> chair. Our 14 year old has one. It's only 1 1/2 years old and it's
unbelievable
> the things that have broken on it. Just this week  a part on the
tilt motor
> snapped and we have to replace the entire motor. for a miniscule
1000 dollars.
> What a racket. kathy
>

#19126 From: "Adele" <jasona65@...>
Date: Sat Oct 21, 2006 7:28 pm
Subject: RE: UPDATE, ME
navymom2josh
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Did you get a Mini Van or a full size van?  With a mine, a ramp works great.  On a Full size, you’ll need a lift.  Try contacting the Department of Rehab for your state.  They do fund these modification, especially if you are trying to go to college and or work.

 

Adele

 


From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Chris Coulson
Sent: Saturday, October 21, 2006 10:09 AM
To: MD-List@yahoogroups.com
Subject: [MD-List] UPDATE, ME

 

Dear family,
I've now got a van and am trying to work tings out to get a lift
or ramp. It sure works better than the car I had and even looks beter
to. Wish me good luck.
Love Robinc


#19125 From: "Chris Coulson" <robinc1961@...>
Date: Sat Oct 21, 2006 2:09 pm
Subject: UPDATE, ME
robinc1961
Offline Offline
Send Email Send Email
 
Dear family,
      I've now got a van and am trying to work tings out to get a lift
or ramp.  It sure works better than the car I had and even looks beter
to. Wish me good luck.
              Love Robinc

#19124 From: "Chris Coulson" <robinc1961@...>
Date: Sat Oct 21, 2006 2:06 pm
Subject: Hi MJ
robinc1961
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Dear MJ,
      Wsa glad to hear how you are doing.  I want to wosh you good luck
in your new classes and with the van.  I hope you are doing fine at
have a very good day.
           God bless Robinc

#19123 From: BracinKnee@...
Date: Sat Oct 21, 2006 1:41 am
Subject: MJ Update - Pictures of Campus and other stuff
bshanson68
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Hi everyone:
 
    So, once again, it has been 2 weeks since my last update:  where does the time go?  I have had a good time with way too many papers to write, but what else is new.  On Tuesday, October 10th, I found out that I had 12 (yes, you read that right) papers due by the 24th of October.  I am happy to report that I only have one left to write by Tuesday!!!  Almost done.  I have 3 weeks left of class....where does the time go? 
    Last Thursday, Oct. 12th, they came to fix the van.  They brought us a mini van with a rear entry ramp.  It was so wonderful on campus and driving around...so much quicker to load and unload!  We got our big van back on Monday.  We have a new lift that is much more stable (still having a few issues with it, but it is so much safer.)  But I do miss the mini van!!!! If only I had unlimited money...
    This past Wednesday (10/18), I registered for my winter session classes.  I am taking Mathematics in the Modern World, Psychology (part 2), Honors: Stephen King's America (English 101), and Disability in Literature & Culture.  That is 16 credit hours.  My class that I needed to take for Rehab, was full by 7:10am, so I decided to take Disability in Lit & Culture.  Not too bad.  Mon, Wed, and Fri I have class from 9:30 to 12 and Tues and Thurs I have classes at 8:30 to 10 and 2:15 to 4:00.  Not bad at all!  Still have to get up early every day, but I am adjusting! 
    Yesterday, I scheduled my flu shot for Nov. 1st.  Brenda is not getting one, since she gets sick from them (can't have her getting sick).  Today, I met grandma, aunt Jill, Zach and Pete at the mall and we went shopping and then grandma took us out to eat at Olive Garden.  You have to try something....we got Smoked Mozzarella Fonduta!!  IT WAS AWESOME!!!!!  I also got popcorn at Popcorn Pizzazz!  It is peanut butter popcorn.  Yes, it is really good.  The first bite was strange, but beware, it grows on you and is delicious!! 
    Tomorrow we are going apple picking and getting pumpkins!!!  Brenda is going to make apple crisp!!  (Am I making you hungry yet?)  Well, that is about all for now.  I promise to update at least once before the quarter is done (I can't guarantee much more than that as I have 2 tests, 8 to 10 more papers to do, and to read another book). 
    On another note, B4SMA sent out its 300th blanket (well, actually, we sent out number 310 today).  The SMA Support Calendar Sale (www.cafepress.com/b4sma) is going great.  We have sold 113 calendars so far!!  I am so excited since Christmas is still 2 months and 5 days away!  Don't forget to order your calendar.  They make awesome Christmas gifts for all your friends and families. 
 
MJ
18, SMA Super type I
"People are often unreasonable, illogical, and self-centered;
Forgive them anyway.
If you are kind, people may accuse you of selfish, ulterior motives;
Be kind anyway.
If you are successful, you will win some false friends and some true enemies;
Succeed anyway.
If you are honest and frank, people may cheat you;
Be honest and frank anyway.
What you spend years building, someone could destroy overnight;
Build anyway.
If you find serenity and happiness, they may be jealous;
Be happy anyway.
The good you do today, people will often forget tomorrow;
Do good anyway.
Give the world the best you have and it may just never be enough;
Give the world the best you have anyway.

You see, in the final analysis, it's all between you and God;
It was never between you and them anyway.
" ~Mother Teresa

http://www.caringbridge.com/ny/mjpurk - My Journal

http://www.our-sma-angels.com/Margaret/ - My Original Website


http://www.mjthesmaqueen.com/ - My New Website

http://www.our-sma-angels.com/b4sma/ - My Organization's Site

http://www.caringbridge.org/ny/b4sma/ - My Organization's Update Site

#19122 From: "Pichaske, Marie" <mpichaske@...>
Date: Thu Oct 19, 2006 5:29 pm
Subject: RE: UPDATE
mpichaske
Offline Offline
Send Email Send Email
 
Dear Chris,
 
I'm so glad, again, to hear from you.  We're here for you.  When you can, we love to hear from you.
 
Marie
 


From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Chris Coulson
Sent: Thursday, October 19, 2006 1:16 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] UPDATE

Hi every body,
I'm still kicking but just barely. Sorry I've not posted in a
while but haven't been feeling good. Hope every one is ok and have a
good day.


#19121 From: "Chris Coulson" <robinc1961@...>
Date: Thu Oct 19, 2006 5:16 pm
Subject: UPDATE
robinc1961
Offline Offline
Send Email Send Email
 
Hi every body,
      I'm still kicking but just barely.  Sorry I've not posted in a
while but haven't been feeling good.  Hope every one is ok and have a
good day.

#19119 From: "Pichaske, Marie" <mpichaske@...>
Date: Mon Oct 16, 2006 6:54 pm
Subject: RE: UPDATE!
mpichaske
Offline Offline
Send Email Send Email
 
Hi Chris,
I'm so happy to hear from you. Are things better?
Marie
 

Marie Pichaske
Administrative Coordinator
Center for Genetic Medicine
Children's National Medical Center
111 Michigan Avenue, N.W.
Washington, DC 20010
(202) 884-6029 (voice)
(202) 884-6014 (fax)
mpichaske@...

 


From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Chris Coulson
Sent: Sunday, October 15, 2006 1:07 AM
To: MD-List@yahoogroups.com
Subject: [MD-List] UPDATE!

Sorry it has taken so long. I've got three dr's a heart,family and a
counslor that keeps check on me. My heart is fair and o2 for the
breathing at night. Thank you for the support and God bless you all
Chris


#19118 From: "Pichaske, Marie" <mpichaske@...>
Date: Mon Oct 16, 2006 7:11 pm
Subject: RE: chacot-marie-tooth, dealing with it?
mpichaske
Offline Offline
Send Email Send Email
 
Is it Steve? Well, welcome. You'll get through this, as crappy as it is.  You are entitled to your grief.  I'm not sure you are the brother in the wheelchair or not.  Regardless, hang in there. Others of us have been where you are.  There is life on the other side of feeling blue.  You are brave to send us this email.  This is where you can get support and learn about what worked for us.  All you have to do is ask.
 
take care
Marie
 
 


From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of steve
Sent: Saturday, October 14, 2006 7:27 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] chacot-marie-tooth, dealing with it?

Does anyone know of any effective ways of coping with it? My older
brother is on a wheelchair because of it. I'm afraid to look for
another wife [got divorced] My hands shake so bad I think people at
work think I'm on drugs. Know of any support groups in central Indiana?
I know I have it better than some, just a little concerned about the
future


#19117 From: jenny hart <jenny62343@...>
Date: Mon Oct 16, 2006 2:10 am
Subject: Re: chacot-marie-tooth, dealing with it?
jenny62343
Offline Offline
Send Email Send Email
 
Steve, my son Jayson is 13 and has CMT. He is in a
wheelchair. He lost the ability to stand and walk
about 7 months ago. I have found my local MDA to be
very helpfull. They were able to tell me where the
closest support group meetings are and even send me
reminders in the mail. Although the closest one is 2
hours away from me. The MDA is calling it's clients in
my area trying to get one started closer to home.
These people are god sent!

--- ShawnaFeely@... wrote:

> I agree with the last comment that it is important
> to live your life and not give up on the things you
> want due to CMT.  It is often helpful to find out as
> much as you can and talk to other people who are
> going through similar problems.  The CMTA is also a
> good source of information re: Charcot Marie Tooth.
> They sponsor support groups all over the US, so they
> would probably know of some in your area.  There is
> also a CMT specialty clinic in Detroit, MI.  If you
> are willing to travel, they offer an evaluation of
> your symptoms and can help with different ideas for
> daily management of CMT.  You can find out more
> about them on the CMT Association website.
>
>
> -----Original Message-----
> From: jasona65@...
> To: MD-List@yahoogroups.com
> Sent: Sun, 15 Oct 2006 11:37 AM
> Subject: RE: [MD-List] chacot-marie-tooth, dealing
> with it?
>
>
> Steven,  There are no “tricks” to coping with a
> disability.  You first have to come to terms with it
> and not let it be the controlling factor in your
> life. Yes, you have difficulties in doing thing, so
> you have to do them differently. The CMT is what you
> have and not who you are.  Look for another partner,
> if that’s what you want.  Don’t dwell on what
> other might think of you.  I have done these things
> and I’m sure my son is a happier person because of
> them.
>
> Have you checked with your local MDA office to see
> if there are any groups they sponsor?  See if you
> can find something on line.  I know that these DMD
> groups have been very beneficial to me.
>
> My son Jason, now 21 has DMD.
>
>
>
>
> From: MD-List@yahoogroups.com
> [mailto:MD-List@yahoogroups.com] On Behalf Of steve
> Sent: Saturday, October 14, 2006 7:27 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] chacot-marie-tooth, dealing with
> it?
>
> Does anyone know of any effective ways of coping
> with it? My older
> brother is on a wheelchair because of it. I'm afraid
> to look for
> another wife [got divorced] My hands shake so bad I
> think people at
> work think I'm on drugs. Know of any support groups
> in central Indiana?
> I know I have it better than some, just a little
> concerned about the
> future
>
>
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#19116 From: "Tina R" <tsriley@...>
Date: Sun Oct 15, 2006 9:54 pm
Subject: Re: deflazacort versus adrenel
bry_dmd
Offline Offline
Send Email Send Email
 
"Only negative is our illustrious FDA has not yet approved it even though the rest of the world has been successfully using it for years as have many members of this post."
 
If they would approve it here, I would definitely jump on it, as there is the chance he would respond better to deflazacort than prednisone! The kind folks at the FDA don't seem to want to help us out, though....
 
T.
 
 
----- Original Message -----
From: Greg Evans
Sent: Sunday, October 15, 2006 1:55 PM
Subject: RE: [MD-List] deflazacort versus adrenel

 
Hi  Tina
From what I have learned, Deflazacort is superior to Prednisone. It appears to have the favorable attributes of Pred. without the nasty negative side effects. (mood swings, etc.)  In fact, recent tests have indicated that it actually mineralizes bone. Only negative is our illustrious FDA has not yet approved it even though the rest of the world has been successfully using it for years as have many members of this post. I think you have a good idea there with the vibrating chair. I try to get Davey out of his chair every chance I get just to get him in a different position. I give Davey Vit D an K in emulsion as well cal-mag supplements. Another good bone builder is Strontium. You may want to consider getting your son a 25 Hydroxy Vit D . blood teat. Vitamin D is crucial to CA metabolism.
Greg 

Hi Greg -
 
I'm not sure which disease your son has; my six-year-old has Duchenne. He's been on prednisone since he was 2-1/2 yrs old. He had osteoporosis - demineralizing of the bones, including the spine,  from very early on. Some of that is inherent in the disease, but the steroids do tend to make it worse. I do worry about it, as vertebral fractures do happen - sometimes painlessly, sometimes not.
 
We give Bryan a calcium supplement, and encourage him to exercise as much as he feels like. Obviously, if your son isn't walking, that is tough to do. I push for sun exposure on a regular basis - we live in Maine, so it can be tough in the winter! I also encourage him to sit in the recliner chair with the heat/vibration pad on it - sounds silly, but there has been some research that hints that the vibration can help encourage bone growth. And he really likes the warmth when the weather is cold and damp! I theorize that most any non-damaging stress on the bones will encourage them to strengthen, but I could be wrong. Excessive sodium can leach the calcium from the bones as well, so I'm careful about salt intake.
 
Sometimes steroids are prescribed with a dosing pattern that includes days off, to prevent the adrenal gland from shutting down. It does seem to help with side effects, but it makes it less effective against the muscle deterioration. All steroids have heavy-duty side effects, and using them can be a tough decision to make. The doctors at our clinic seem a bit surprised by his quad and gleut (butt) strength....I have to assume the prednisone is helping him, but I do second-guess that decision a lot.
 
Best wishes - Tina
 
 
----- Original Message -----
From: Greg Evans
Sent: Saturday, October 14, 2006 9:21 AM
Subject: [MD-List] deflazacort versus adrenel



I am wondering if anyone else has their son on Calcort. I have had Davey on
it for several years and it seems to have slowed the progression of the
disease at the expense of it having postponed his entering puberty both
mentally and phyically. I am looking at this as a plus as when boys go into
puberty this disease seems to go into high ghear. Seems his adrenal gland
has shut down and does supply cortisol to him. Also, his back bone is
deminerizing? Has anyone had this expierence? I am told not to be concerned
about it, but......its kinda hard not to? Your thoughts?

Greg

Yahoo! Groups Links


#19115 From: "Arlene " <breezytimber@...>
Date: Sun Oct 15, 2006 9:49 pm
Subject: Re: http://other-dmd-pathways.blogspot.com 4
breezytimber
Offline Offline
Send Email Send Email
 
Vitamin E and selenium works with sheep with muscular dystrophy but
not humans.  I did tell my son's doctor at Hopkins 31 years ago and
they said it does not work with humans.  However I have given my son
selenium and E since he was about 7 years old.  It may have helped
prolong his walking a little, but it is hard to tell for sure what
does help, he also takes Q 10 which is suppose  help the heart, plus
Multi, calcium, & glucosamine, sometime in the winter he would take
prescription Vit D twice a week, because you need sunlight to produce
D in you body and in the winter he didn't get as much sunshine. I hope
he has continued his vitamins. Way back then I read Adele Davis books
on nutrition and tried everything that was to improve muscle,
including rosemary tea, however I read the tea can work as a diuretic
which he didn't need. I also do not approve of the way they do
testing, first most people do not always tell the doctor the truth.
When asked if they took the meds or diet prescribed they will say yes
even if they have not followed orders.  I know people with high
chlosterol and they tell the doctor they are on a low fat diet and
they are not.  Have you ever noticced when answering the questioneers
doctors sometime give you to fill out about health you answer what
looks best for you.  My GYN gave me a survey and some of the questions
I fudged a on.  If I did something right 3 times one week and in the
other 3 weeks did it only 1 or 2 times, I would put 3 times a week. I
felt I intend to do it 3 times a week, but didn't get around to it,
but some time I do it 3 times a week. Did you see on the news where
high school kids were asked if they would cheat to pass, and a large
percent admitted yes.
Arlene


--- In MD-List@yahoogroups.com, "apelofsky" <apelofsky@...> wrote:
>
> Hi:
>
> I posted a paper on my blog that may explain why selenium and
vitamin
> E helps our kids especially if our kids take these nutrients as soon
> as they are diagnosed. I also suggest that it is likely that kids
> would not get this disease if their Mothers were taking these
> nutrients before they become pregnant. Please show this paper to
your
> docs. Just maybe the funding agencies will take heed and study how
the
> incidence of this disease could be significantly reduced if young
> women were to take these nutrients.
>
> Arnold
>

#19114 From: ShawnaFeely@...
Date: Sun Oct 15, 2006 8:51 pm
Subject: Re: chacot-marie-tooth, dealing with it?
shawna_feely
Offline Offline
Send Email Send Email
 
I agree with the last comment that it is important to live your life and not give up on the things you want due to CMT.  It is often helpful to find out as much as you can and talk to other people who are going through similar problems.  The CMTA is also a good source of information re: Charcot Marie Tooth.  They sponsor support groups all over the US, so they would probably know of some in your area.  There is also a CMT specialty clinic in Detroit, MI.  If you are willing to travel, they offer an evaluation of your symptoms and can help with different ideas for daily management of CMT.  You can find out more about them on the CMT Association website.
 
 
-----Original Message-----
From: jasona65@...
To: MD-List@yahoogroups.com
Sent: Sun, 15 Oct 2006 11:37 AM
Subject: RE: [MD-List] chacot-marie-tooth, dealing with it?

Steven,  There are no “tricks” to coping with a disability.  You first have to come to terms with it and not let it be the controlling factor in your life. Yes, you have difficulties in doing thing, so you have to do them differently. The CMT is what you have and not who you are.  Look for another partner, if that’s what you want.  Don’t dwell on what other might think of you.  I have done these things and I’m sure my son is a happier person because of them.
 
Have you checked with your local MDA office to see if there are any groups they sponsor?  See if you can find something on line.  I know that these DMD groups have been very beneficial to me. 
 
My son Jason, now 21 has DMD
 

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of steve
Sent: Saturday, October 14, 2006 7:27 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] chacot-marie-tooth, dealing with it?
 
Does anyone know of any effective ways of coping with it? My older
brother is on a wheelchair because of it. I'm afraid to look for
another wife [got divorced] My hands shake so bad I think people at
work think I'm on drugs. Know of any support groups in central Indiana?
I know I have it better than some, just a little concerned about the
future

Check out the new AOL. Most comprehensive set of free safety and security tools, free access to millions of high-quality videos from across the web, free AOL Mail and more.

#19113 From: "Greg Evans" <gregevans01@...>
Date: Sun Oct 15, 2006 5:55 pm
Subject: RE: deflazacort versus adrenel
gregevans01@...
Send Email Send Email
 
 
Hi  Tina
From what I have learned, Deflazacort is superior to Prednisone. It appears to have the favorable attributes of Pred. without the nasty negative side effects. (mood swings, etc.)  In fact, recent tests have indicated that it actually mineralizes bone. Only negative is our illustrious FDA has not yet approved it even though the rest of the world has been successfully using it for years as have many members of this post. I think you have a good idea there with the vibrating chair. I try to get Davey out of his chair every chance I get just to get him in a different position. I give Davey Vit D an K in emulsion as well cal-mag supplements. Another good bone builder is Strontium. You may want to consider getting your son a 25 Hydroxy Vit D . blood teat. Vitamin D is crucial to CA metabolism.
Greg 

Hi Greg -
 
I'm not sure which disease your son has; my six-year-old has Duchenne. He's been on prednisone since he was 2-1/2 yrs old. He had osteoporosis - demineralizing of the bones, including the spine,  from very early on. Some of that is inherent in the disease, but the steroids do tend to make it worse. I do worry about it, as vertebral fractures do happen - sometimes painlessly, sometimes not.
 
We give Bryan a calcium supplement, and encourage him to exercise as much as he feels like. Obviously, if your son isn't walking, that is tough to do. I push for sun exposure on a regular basis - we live in Maine, so it can be tough in the winter! I also encourage him to sit in the recliner chair with the heat/vibration pad on it - sounds silly, but there has been some research that hints that the vibration can help encourage bone growth. And he really likes the warmth when the weather is cold and damp! I theorize that most any non-damaging stress on the bones will encourage them to strengthen, but I could be wrong. Excessive sodium can leach the calcium from the bones as well, so I'm careful about salt intake.
 
Sometimes steroids are prescribed with a dosing pattern that includes days off, to prevent the adrenal gland from shutting down. It does seem to help with side effects, but it makes it less effective against the muscle deterioration. All steroids have heavy-duty side effects, and using them can be a tough decision to make. The doctors at our clinic seem a bit surprised by his quad and gleut (butt) strength....I have to assume the prednisone is helping him, but I do second-guess that decision a lot.
 
Best wishes - Tina
 
 
----- Original Message -----
From: Greg Evans
Sent: Saturday, October 14, 2006 9:21 AM
Subject: [MD-List] deflazacort versus adrenel



I am wondering if anyone else has their son on Calcort. I have had Davey on
it for several years and it seems to have slowed the progression of the
disease at the expense of it having postponed his entering puberty both
mentally and phyically. I am looking at this as a plus as when boys go into
puberty this disease seems to go into high ghear. Seems his adrenal gland
has shut down and does supply cortisol to him. Also, his back bone is
deminerizing? Has anyone had this expierence? I am told not to be concerned
about it, but......its kinda hard not to? Your thoughts?

Greg

Yahoo! Groups Links


#19112 From: "Adele" <jasona65@...>
Date: Sun Oct 15, 2006 3:37 pm
Subject: RE: chacot-marie-tooth, dealing with it?
navymom2josh
Offline Offline
Send Email Send Email
 

Steven,  There are no “tricks” to coping with a disability.  You first have to come to terms with it and not let it be the controlling factor in your life. Yes, you have difficulties in doing thing, so you have to do them differently. The CMT is what you have and not who you are.  Look for another partner, if that’s what you want.  Don’t dwell on what other might think of you.  I have done these things and I’m sure my son is a happier person because of them.

 

Have you checked with your local MDA office to see if there are any groups they sponsor?  See if you can find something on line.  I know that these DMD groups have been very beneficial to me. 

 

My son Jason, now 21 has DMD. 

 


From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of steve
Sent: Saturday, October 14, 2006 7:27 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] chacot-marie-tooth, dealing with it?

 

Does anyone know of any effective ways of coping with it? My older
brother is on a wheelchair because of it. I'm afraid to look for
another wife [got divorced] My hands shake so bad I think people at
work think I'm on drugs. Know of any support groups in central Indiana?
I know I have it better than some, just a little concerned about the
future


#19110 From: "apelofsky" <apelofsky@...>
Date: Sun Oct 15, 2006 1:12 pm
Subject: http://other-dmd-pathways.blogspot.com 4
apelofsky
Offline Offline
Send Email Send Email
 
Hi:

I posted a paper on my blog that may explain why selenium and vitamin
E helps our kids especially if our kids take these nutrients as soon
as they are diagnosed. I also suggest that it is likely that kids
would not get this disease if their Mothers were taking these
nutrients before they become pregnant. Please show this paper to your
docs. Just maybe the funding agencies will take heed and study how the
incidence of this disease could be significantly reduced if young
women were to take these nutrients.

Arnold

#19109 From: "Chris Coulson" <robinc1961@...>
Date: Sun Oct 15, 2006 5:07 am
Subject: UPDATE!
robinc1961
Offline Offline
Send Email Send Email
 
Sorry it has taken so long. I've got three dr's a heart,family and a
counslor that keeps check on me.  My heart is fair and o2 for the
breathing at night.  Thank you for the support and God bless you all
                                                        Chris

#19108 From: "Tina R" <tsriley@...>
Date: Sun Oct 15, 2006 12:46 am
Subject: Re: deflazacort versus adrenel
bry_dmd
Offline Offline
Send Email Send Email
 
Hi Greg -
 
I'm not sure which disease your son has; my six-year-old has Duchenne. He's been on prednisone since he was 2-1/2 yrs old. He had osteoporosis - demineralizing of the bones, including the spine,  from very early on. Some of that is inherent in the disease, but the steroids do tend to make it worse. I do worry about it, as vertebral fractures do happen - sometimes painlessly, sometimes not.
 
We give Bryan a calcium supplement, and encourage him to exercise as much as he feels like. Obviously, if your son isn't walking, that is tough to do. I push for sun exposure on a regular basis - we live in Maine, so it can be tough in the winter! I also encourage him to sit in the recliner chair with the heat/vibration pad on it - sounds silly, but there has been some research that hints that the vibration can help encourage bone growth. And he really likes the warmth when the weather is cold and damp! I theorize that most any non-damaging stress on the bones will encourage them to strengthen, but I could be wrong. Excessive sodium can leach the calcium from the bones as well, so I'm careful about salt intake.
 
Sometimes steroids are prescribed with a dosing pattern that includes days off, to prevent the adrenal gland from shutting down. It does seem to help with side effects, but it makes it less effective against the muscle deterioration. All steroids have heavy-duty side effects, and using them can be a tough decision to make. The doctors at our clinic seem a bit surprised by his quad and gleut (butt) strength....I have to assume the prednisone is helping him, but I do second-guess that decision a lot.
 
Best wishes - Tina
 
 
----- Original Message -----
From: Greg Evans
Sent: Saturday, October 14, 2006 9:21 AM
Subject: [MD-List] deflazacort versus adrenel



I am wondering if anyone else has their son on Calcort. I have had Davey on
it for several years and it seems to have slowed the progression of the
disease at the expense of it having postponed his entering puberty both
mentally and phyically. I am looking at this as a plus as when boys go into
puberty this disease seems to go into high ghear. Seems his adrenal gland
has shut down and does supply cortisol to him. Also, his back bone is
deminerizing? Has anyone had this expierence? I am told not to be concerned
about it, but......its kinda hard not to? Your thoughts?

Greg

Yahoo! Groups Links


#19107 From: "steve" <scatlli@...>
Date: Sat Oct 14, 2006 11:27 pm
Subject: chacot-marie-tooth, dealing with it?
scatlli
Offline Offline
Send Email Send Email
 
Does anyone know of any effective ways of coping with it? My older
brother is on a wheelchair because of it. I'm afraid to look for
another wife [got divorced] My hands shake so bad I think people at
work think I'm on drugs. Know of any support groups in central Indiana?
   I know I have it better than some, just a little concerned about the
future

#19106 From: "Diane" <dpro@...>
Date: Sat Oct 14, 2006 5:07 pm
Subject: Re: deflazacort versus adrenel
dianeproc
Offline Offline
Send Email Send Email
 
HI Greg,
We have talked before so you may remember that son has been on Calcort for about 6 years now. He is 11 years old.  Cy has a slight curve now to his back, only about 12 degrees.  He is mentally and physically  immature for his age.  I see no signs of the onset of puberty yet other then a little acne on his face.  I know nothing about his adrenal gland. How did you figer out your sons gland has shut down?  Did he have some sort of test to confirm that?
Diane
 
 
 
----- Original Message -----
From: Greg Evans
Sent: Saturday, October 14, 2006 8:21 AM
Subject: [MD-List] deflazacort versus adrenel



I am wondering if anyone else has their son on Calcort. I have had Davey on
it for several years and it seems to have slowed the progression of the
disease at the expense of it having postponed his entering puberty both
mentally and phyically. I am looking at this as a plus as when boys go into
puberty this disease seems to go into high ghear. Seems his adrenal gland
has shut down and does supply cortisol to him. Also, his back bone is
deminerizing? Has anyone had this expierence? I am told not to be concerned
about it, but......its kinda hard not to? Your thoughts?

Greg

Yahoo! Groups Links


#19105 From: "Greg Evans" <gregevans01@...>
Date: Sat Oct 14, 2006 1:21 pm
Subject: deflazacort versus adrenel
gregevans01@...
Send Email Send Email
 
I am wondering if anyone else has their son on Calcort. I have had Davey on
it for several years and it seems to have slowed the progression of the
disease at the expense of it having postponed his entering puberty both
mentally and phyically. I am looking at this as a plus as when boys go into
puberty this disease seems to go into high ghear. Seems his adrenal gland
has shut down and does supply cortisol to him. Also, his back bone is
deminerizing? Has anyone had this expierence? I am told not to be concerned
about it, but......its kinda hard not to? Your thoughts?

Greg




Yahoo! Groups Links

#19104 From: "Rich Clingman" <GoRich@...>
Date: Wed Oct 11, 2006 3:27 pm
Subject: Re: Hi Donna here from New Zealand
bachniv
Offline Offline
Send Email Send Email
 
According to Dr. John R. Bach, going on vent support *does not* cause dependence on a vent. (I assume this is your son's concern.)
 
He also says the CO2 is a critical measurement (as mentioned by Jenny Smith). Using a capnograph, the "end tidal CO2" can be measured.
 
Again, as Jenny mentioned, headaches, loss of appitite and other symptoms are often caused by CO2 retention, and can often be reduced or eliminated with vent support at night.
 
Rich Clingman
 
 
----- Original Message -----
From: tyson@...
Sent: Tuesday, October 10, 2006 7:39 PM
Subject: [MD-List] Hi Donna here from New Zealand

Hi there
It has been ages since i posted and things have been going fairly well with Tyson. He is now 15 and doing okay.
They are wanting him to do another sleep study and look at trying bi-pap. He refuses and says that he does not want one. What am i to do?
.


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