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#16091 From: "Diane Smith-Hoban" <smithhoban@...>
Date: Tue Apr 5, 2005 11:23 pm
Subject: RE: Digest Number 1657 smithhoban
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The "Ms. Wheelchair America" article ran on April 1 (April Fool's) on a
mocked-up MSN web page...

very funny, indeed.

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#16090 From: "Lynda Roy" <lyndroy@...>
Date: Tue Apr 5, 2005 7:10 pm
Subject: Re: Ms. Wheelchair loses Crown lyndroy
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Doesn't it mirror life in a way though?  I have a rare form of MD
called Nemaline Myopathy.  I walk with a significant gait...always
have.  What this has meant for me in Canada is that I have to prove I
am "disabled enough" to need special services and consideration.

Lynda
--- In MD-List@yahoogroups.com, "Mel, Johanna, Ian & Brendan Wright"
<mjib@s...> wrote:
> The usual amazing lack of understanding regarding disabilities!
This sure reinforces my views on pageants - the "specialized" ones
seem to be even worse!
>
> Johanna
>   ----- Original Message -----
>   From: Seth & DeeDee Fuller
>   To: MD-List@yahoogroups.com
>   Sent: Tuesday, April 05, 2005 8:42 AM
>   Subject: [MD-List] Ms. Wheelchair loses Crown
>
>
>   (Saw this on MSNBC)
>
>   Ms. Wheelchair stands up, loses crown
>   Wisconsin pageant winner found to be 'not disabled enough'
>   The Associated Press
>   Updated: 6:54 a.m. ET April 1, 2005
>
>   APPLETON, Wis. - Ms. Wheelchair Wisconsin has been stripped of
her title because pageant officials say she can stand - and point to
a newspaper picture as proof.
>
>   Janeal Lee, who has muscular dystrophy and uses a scooter, was
snapped by The Post-Crescent newspaper standing among her high school
math students. The photo was not an expose.
>   "I've been made to feel as if I can't represent the disabled
citizens of Wisconsin because I'm not disabled enough," Lee said
Thursday.
>
>   Lee, 30, of Appleton, had planned to go to the national pageant
with her younger sister, who also has muscular dystrophy and won the
competition in Minnesota.
>
>   Students at Kaukauna High School, where Lee teaches, raised
$1,000 for her trip to the national pageant.
>
>   The move by the state pageant officials, led by coordinator Gina
Hackel, is supported by the national board.
>
>   Candidates for the crown have to "mostly be seen in the public
using their wheelchairs or scooters," said Judy Hoit, Ms. Wheelchair
America's treasurer. "Otherwise you've got women who are in their
wheelchairs all the time and they get offended if they see someone
standing up. We can't have title holders out there walking when
they're seen in the public."
>
>   Hackel said Lee should have been aware of the rules.
>
>   The crown now goes to first runner-up Michelle Kearney of
Milwaukee, who will travel to New York in July for the national
pageant
>
>
>
>
>
>
>
> --------------------------------------------------------------------
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#16089 From: "Mel, Johanna, Ian & Brendan Wright" <mjib@...>
Date: Tue Apr 5, 2005 6:44 pm
Subject: Re: Ms. Wheelchair loses Crown scrabbler55
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The usual amazing lack of understanding regarding disabilities! This sure reinforces my views on pageants - the "specialized" ones seem to be even worse!

Johanna

----- Original Message -----

From: Seth & DeeDee Fuller

To: MD-List@yahoogroups.com

Sent: Tuesday, April 05, 2005 8:42 AM

Subject: [MD-List] Ms. Wheelchair loses Crown

(Saw this on MSNBC)

Ms. Wheelchair stands up, loses crown

Wisconsin pageant winner found to be 'not disabled enough'

The Associated Press

Updated: 6:54 a.m. ET April 1, 2005

APPLETON, Wis. - Ms. Wheelchair Wisconsin has been stripped of her title because pageant officials say she can stand � and point to a newspaper picture as proof.

Janeal Lee, who has muscular dystrophy and uses a scooter, was snapped by The Post-Crescent newspaper standing among her high school math students. The photo was not an expose.
�I�ve been made to feel as if I can�t represent the disabled citizens of Wisconsin because I�m not disabled enough,� Lee said Thursday.

Lee, 30, of Appleton, had planned to go to the national pageant with her younger sister, who also has muscular dystrophy and won the competition in Minnesota.

Students at Kaukauna High School, where Lee teaches, raised $1,000 for her trip to the national pageant.

The move by the state pageant officials, led by coordinator Gina Hackel, is supported by the national board.

Candidates for the crown have to �mostly be seen in the public using their wheelchairs or scooters,� said Judy Hoit, Ms. Wheelchair America�s treasurer. �Otherwise you�ve got women who are in their wheelchairs all the time and they get offended if they see someone standing up. We can�t have title holders out there walking when they�re seen in the public.�

Hackel said Lee should have been aware of the rules.

The crown now goes to first runner-up Michelle Kearney of Milwaukee, who will travel to New York in July for the national pageant

Reply | Forward | Messages in this Topic (4)

#16088 From: "Lisa A. Jones" <lisajonesrn@...>
Date: Tue Apr 5, 2005 6:28 pm
Subject: Re: Labs lisajonesrn
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This is my email lisajonesrn@.... You can email me off the list anytime.

Jackie Torres <swpea503@...> wrote:

Hy Lisa I thought Johnells, liver enzymes were high but bradleys are high also

I have bein trying to get in contact with you,but no luck can yu please let me

know if you receive my message.I think you said your son is eight mine is 5 going on 6 next month and they are going throught their changes, I hope you and i can stay in

touch so we can talk about our kids difffernce of needs or same needs I believe

I can cope more with my difficulties if i can count on someone with my same

fears and concerns

Thank you very much

Jackie

"Lisa A. Jones" <lisajonesrn@...> wrote:

The doctor checked Bradley's labs....actually he checked them awhile back and they were rechecked again a couple of weeks ago because he meant to have the CPK checked. His Liver enzmes and CPK were elevated.

ALT         840

AST        518

CPK      4661

His original CPK was 14,000 at age 3 1/2. Do you think less muscle damage is occurring right now that back at the time of initial diagnosis?

The doctor tells me the ALT and AST also represent muscle damage. He says if it were his liver, he would have a high bilirubin and he would be yellow. I know this is common in Duchenne. Has anyone else with DMD had liver enzymes this high? Should I be concerned about the prednisone he is on?

Also thinking maybe the prednisone is decreasing muscle damage though and maybe the CPK shows this.

Sincerely Yours,

Lisa A. Jones

Walk for Bradley http://mom-of-bradley.tripod.com/id22.html

Sincerely Yours,

Lisa A. Jones

Walk for Bradley http://mom-of-bradley.tripod.com/id22.html

Reply | Forward | Messages in this Topic (6)

#16087 From: sridhar ramachandra <smramachandra@...>
Date: Tue Apr 5, 2005 6:00 pm
Subject: Re: Re: Duchenne Carriers smramachandra
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My mother-in-law who passed awayafter a long happy life had no memory problems. She had five daughters all of whom none of have any memory problems. In fact, they have sharp memories. They have all been carriers of DMD. But, only two of the numerous grand-sons have DMD.

Ram

nicksgrandma12000 <slickmari@...> wrote:

I don't know where you heard this, but I don't think it's a problem. My mother who is 85 years old, aunt who is 82 do not have memory problems at all. They are both carriers as well as my grandmother, who died at 72 never had a memory problem and I don't have any problems. I hope that helps. --- In MD-List@yahoogroups.com, di864@a... wrote: > Hi, > > I have not heard this but would be interested to know if it is true, being a > carrier myself. > Dianne

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#16086 From: Jackie Torres <swpea503@...>
Date: Tue Apr 5, 2005 4:59 pm
Subject: Re: Labs swpea503
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I thank kathy for her information and hope she can continue to give this valuble information about high cpk or anything else she made know about.(DMD)or md.

Thanks

swpea503@...

Kmmx2@... wrote:

the CPK is lower because the muscles are already damaged, and new muscle damage has slowed down. hope this helps. kathy, mom of Alex 12 with DMD

-----Original Message-----
From: Lisa A. Jones <lisajonesrn@...>
To: dmdsupport@yahoogroups.com; md-list@yahoogroups.com
Sent: Tue, 5 Apr 2005 07:51:56 -0700 (PDT)
Subject: [MD-List] Labs

The doctor checked Bradley's labs....actually he checked them awhile back and they were rechecked again a couple of weeks ago because he meant to have the CPK checked. His Liver enzmes and CPK were elevated.

ALT         840

AST        518

CPK      4661

His original CPK was 14,000 at age 3 1/2. Do you think less muscle damage is occurring right now that back at the time of initial diagnosis?

The doctor tells me the ALT and AST also represent muscle damage. He says if it were his liver, he would have a high bilirubin and he would be yellow. I know this is common in Duchenne. Has anyone else with DMD had liver enzymes this high? Should I be concerned about the prednisone he is on?

Also thinking maybe the prednisone is decreasing muscle damage though and maybe the CPK shows this.

Sincerely Yours,

Lisa A. Jones

Walk for Bradley http://mom-of-bradley.tripod.com/id22.html

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.

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#16085 From: "Gapko, Andrea M." <gapkoam@...>
Date: Tue Apr 5, 2005 4:36 pm
Subject: RE: Labs gapkoam
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How old is Bradley now? CPK levels usually decline as the kids have less muscle mass and more fat and fiber tissue where there used to be muscle (at least that's how it was explained to me). Once a diagnosis was determined, out kids never had CPK levels run. I'll try to remember to check my sons ALT and AST levels. I know they are both elevated. I'm not sure you can compare these numbers when they come out of different labs. You also have to know the "normal" levels for the specific lab.

Our doctor wanted to take our kids off Co-enzyme 10 because of their elevated liver enzymes, but I want to put them back on.

Andrea

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: Lisa A. Jones [mailto:lisajonesrn@...]
Sent: Tuesday, April 05, 2005 9:52 AM
To: dmdsupport@yahoogroups.com; md-list@yahoogroups.com
Subject: [MD-List] Labs

The doctor checked Bradley's labs....actually he checked them awhile back and they were rechecked again a couple of weeks ago because he meant to have the CPK checked. His Liver enzmes and CPK were elevated.

ALT         840

AST        518

CPK      4661

His original CPK was 14,000 at age 3 1/2. Do you think less muscle damage is occurring right now that back at the time of initial diagnosis?

The doctor tells me the ALT and AST also represent muscle damage. He says if it were his liver, he would have a high bilirubin and he would be yellow. I know this is common in Duchenne. Has anyone else with DMD had liver enzymes this high? Should I be concerned about the prednisone he is on?

Also thinking maybe the prednisone is decreasing muscle damage though and maybe the CPK shows this.

Sincerely Yours,

Lisa A. Jones

Walk for Bradley http://mom-of-bradley.tripod.com/id22.html

Reply | Forward | Messages in this Topic (6)

#16084 From: Kmmx2@...
Date: Tue Apr 5, 2005 4:30 pm
Subject: Re: Labs Kmmx2@...
Send Email

the CPK is lower because the muscles are already damaged, and new muscle damage has slowed down. hope this helps. kathy, mom of Alex 12 with DMD

-----Original Message-----
From: Lisa A. Jones <lisajonesrn@...>
To: dmdsupport@yahoogroups.com; md-list@yahoogroups.com
Sent: Tue, 5 Apr 2005 07:51:56 -0700 (PDT)
Subject: [MD-List] Labs

The doctor checked Bradley's labs....actually he checked them awhile back and they were rechecked again a couple of weeks ago because he meant to have the CPK checked. His Liver enzmes and CPK were elevated.

ALT 840

AST 518

CPK 4661

His original CPK was 14,000 at age 3 1/2. Do you think less muscle damage is occurring right now that back at the time of initial diagnosis?

The doctor tells me the ALT and AST also represent muscle damage. He says if it were his liver, he would have a high bilirubin and he would be yellow. I know this is common in Duchenne. Has anyone else with DMD had liver enzymes this high? Should I be concerned about the prednisone he is on?

Also thinking maybe the prednisone is decreasing muscle damage though and maybe the CPK shows this.

Sincerely Yours,

Lisa A. Jones

Walk for Bradley http://mom-of-bradley.tripod.com/id22.html

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.

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#16083 From: Jackie Torres <swpea503@...>
Date: Tue Apr 5, 2005 4:10 pm
Subject: Re: Labs swpea503
Offline
Send Email

Hy Lisa I thought Johnells, liver enzymes were high but bradleys are high also

I have bein trying to get in contact with you,but no luck can yu please let me

know if you receive my message.I think you said your son is eight mine is 5 going on 6 next month and they are going throught their changes, I hope you and i can stay in

touch so we can talk about our kids difffernce of needs or same needs I believe

I can cope more with my difficulties if i can count on someone with my same

fears and concerns

Thank you very much

Jackie

"Lisa A. Jones" <lisajonesrn@...> wrote:

The doctor checked Bradley's labs....actually he checked them awhile back and they were rechecked again a couple of weeks ago because he meant to have the CPK checked. His Liver enzmes and CPK were elevated.

ALT         840

AST        518

CPK      4661

His original CPK was 14,000 at age 3 1/2. Do you think less muscle damage is occurring right now that back at the time of initial diagnosis?

The doctor tells me the ALT and AST also represent muscle damage. He says if it were his liver, he would have a high bilirubin and he would be yellow. I know this is common in Duchenne. Has anyone else with DMD had liver enzymes this high? Should I be concerned about the prednisone he is on?

Also thinking maybe the prednisone is decreasing muscle damage though and maybe the CPK shows this.

Sincerely Yours,

Lisa A. Jones

Walk for Bradley http://mom-of-bradley.tripod.com/id22.html

Reply | Forward | Messages in this Topic (6)

#16082 From: "Seth & DeeDee Fuller" <sethfuller@...>
Date: Tue Apr 5, 2005 3:42 pm
Subject: Ms. Wheelchair loses Crown sethfuller@...
Send Email

(Saw this on MSNBC)

Ms. Wheelchair stands up, loses crown

Wisconsin pageant winner found to be 'not disabled enough'

The Associated Press

Updated: 6:54 a.m. ET April 1, 2005

APPLETON, Wis. - Ms. Wheelchair Wisconsin has been stripped of her title because pageant officials say she can stand � and point to a newspaper picture as proof.

Janeal Lee, who has muscular dystrophy and uses a scooter, was snapped by The Post-Crescent newspaper standing among her high school math students. The photo was not an expose.

�I�ve been made to feel as if I can�t represent the disabled citizens of Wisconsin because I�m not disabled enough,� Lee said Thursday.

Lee, 30, of Appleton, had planned to go to the national pageant with her younger sister, who also has muscular dystrophy and won the competition in Minnesota.

Students at Kaukauna High School, where Lee teaches, raised $1,000 for her trip to the national pageant.

The move by the state pageant officials, led by coordinator Gina Hackel, is supported by the national board.

Candidates for the crown have to �mostly be seen in the public using their wheelchairs or scooters,� said Judy Hoit, Ms. Wheelchair America�s treasurer. �Otherwise you�ve got women who are in their wheelchairs all the time and they get offended if they see someone standing up. We can�t have title holders out there walking when they�re seen in the public.�

Hackel said Lee should have been aware of the rules.

The crown now goes to first runner-up Michelle Kearney of Milwaukee, who will travel to New York in July for the national pageant

Reply | Forward | Messages in this Topic (4)

#16081 From: "Lisa A. Jones" <lisajonesrn@...>
Date: Tue Apr 5, 2005 2:51 pm
Subject: Labs lisajonesrn
Offline
Send Email

ALT 840

AST 518

CPK 4661

His original CPK was 14,000 at age 3 1/2. Do you think less muscle damage is occurring right now that back at the time of initial diagnosis?

Also thinking maybe the prednisone is decreasing muscle damage though and maybe the CPK shows this.

Sincerely Yours,

Lisa A. Jones

Walk for Bradley http://mom-of-bradley.tripod.com/id22.html

Reply | Forward | Messages in this Topic (6)

#16080 From: "nicksgrandma12000" <slickmari@...>
Date: Tue Apr 5, 2005 2:03 pm
Subject: Re: Duchenne Carriers nicksgrandma...
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I don't know where you heard this, but I don't think it's a problem.
My mother who is 85 years old, aunt who is 82 do not have memory
problems at all.  They are both carriers as well as my grandmother,
who
died at 72 never had a memory problem and I don't have any problems.
I
hope that helps.

--- In MD-List@yahoogroups.com, di864@a... wrote:
> Hi,
>
> I have not heard this but would be interested to know if it is
true,
being  a
> carrier myself.
> Dianne

Reply | Forward | Messages in this Topic (12)

#16079 From: <hhjgreene@...>
Date: Tue Apr 5, 2005 4:31 am
Subject: Fwd: Terri's Case: The Roe v. Wade of Euthanasia hhjgreene
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Note: forwarded message attached.

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AFA Online - America's Leading Pro-Family Online Action Site

Please forward this message to your family and friends!

Terri's Case: The Roe v. Wade of Euthanasia

Terri's father says the courts are in control of this country

Dear Holly,

Now that the courts have ruled that a disabled person--Terri Schiavo--must die, who is the next disabled category to go? Those with Alzheimer's? Those with incurable cancer? Those who are paraplegic?

Remember, Terri committed no crime. She signed no will stating her desire to be starved to death. How her injury occurred remains a mystery. She was on no ventilator. She was not brain dead. Her parents offered to take her home and care for her at no expense to anyone other than themselves.

But her husband--the man who years ago abandoned her and moved in with another woman and had two children with that woman but refused to divorce Terri--said he wanted her dead. Strange, but he said nothing about Terri wanting to die until seven years into her disability. For the past 14 years he has denied Terri any therapy. Thirty allegations of abuse, neglect or exploitation were filed in court by the Florida Department of Children and Families. But the judges disregarded all that.

Instead, they said Terri must die. Not in a humane manner, but by starvation.

TAKE ACTION BELOW!
Liberals have been salivating over a case like Terri Schiavo's to use in pushing euthanasia. The promoters for activist liberal judges are poised for major gains.

How arrogant and powerful have activist judges become? Here is what Robert Schindler, Terri�s father, said about the judicial system that sentenced his daughter to a slow, agonizing death by starvation: "What I think you're seeing now is a display where the judicial system is�flexing their muscles. They're showing who's in command of this country. And we're not. The public is not, and the people you elect to Congress are not. The judges are. And woe to this country with those people in power. We've lost control."

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The only body that can stop liberal activist judges from controlling this country is the U.S. Senate. In a few days the Senate will vote on ending the liberals' filibuster of conservative judges who see their sole responsibility to be that of interpreting the Constitution. What the liberals want are activist judges who will create laws they cannot get passed through Congress. The Constitution requires a simple majority of 51 votes. The liberals want to require 60 votes to end their filibuster.

TAKE ACTION NOW!
This will be the most important vote taken in this session of Congress. Tell your two U.S. Senators to vote to change the rule to a simple majority as the Constitution requires. If the Senate fails to do that, then a minority of 40 Senators and their cohorts on the bench can, and will, force their agenda on every American.

Some good Senators are sitting on the fence, waiting to hear from you.

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Sincerely,

Don

Donald E. Wildmon, Founder and Chairman
American Family Association

P.S. Please forward this to your friends and family and alert them to the importance of this vote.

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#16078 From: <hhjgreene@...>
Date: Tue Apr 5, 2005 4:12 am
Subject: Re: ANA TITTER hhjgreene
Offline
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Jackie,

Hi, it is Holly. Does the doctor you go to know alot about dmd? Is it at a mda clinic? Have you gotten any 2nd opinions? Eric has high enzymes as well and I believe it runs high in all boys and men with dmd......Eric has had several blood test with high results.

Your friend, and mom to Eric 20

Holly

swpea503 <swpea503@...> wrote:

Can anyone please talk to me about this blood work results and if it has anything to do with DMD kids having it positive. is there anyone who knows about liver enzymes being high and having anything to do with an autoimmune liver disease, i am very concernabout this because my son is going through all this test right now with positive results. Thanks and i hope someone answer soon Jackie a desperate and concern mom.

Do you Yahoo!?
Yahoo! Mail - Helps protect you from nasty viruses.

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#16077 From: ILuvMere@...
Date: Mon Apr 4, 2005 10:30 pm
Subject: Re: Duchenne Carriers ILuvMere@...
Send Email

Veronica Hinton's vast research and my limited research indicate that boys with DMD tend to have poor short term memory but excellent long term memory. My son is definitely on the mark there.
Carol

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#16076 From: ILuvMere@...
Date: Mon Apr 4, 2005 10:24 pm
Subject: Re: Duchenne Carriers ILuvMere@...
Send Email

Hello,
I'm not sure if I am a carrier or not. One test I had done in 1978 said that I was. I have always had an excellent memory. So I can't tell you one way or the other if what you say is true.
Carol

Reply | Forward | Messages in this Topic (12)

#16075 From: "Dana Miller" <dana.miller@...>
Date: Tue Apr 5, 2005 1:27 am
Subject: Re: Duchenne Carriers danaleemil
Offline
Send Email

lol

----- Original Message -----
From: "Mary E Tyler" <dejah@...>
To: <MD-List@yahoogroups.com>
Sent: Monday, April 04, 2005 4:43 PM
Subject: Re: [MD-List] Duchenne Carriers


>
> >I heard a while ago on this list that female carriers of Duchenne
> >have memory problems.  If this is true, is there anything that can
> >be done for it?  Is there a medication that helps?
>
>
> Oh I can't RESIST:
>
> I don't know. I can't remember.
>
> dej
> --
> ----------------------------------------------------------------------
> I learned never to empty the well of my writing, but always stop when
> there was still something there in the deep part of the well, and let
> it refill at night from the springs that fed it.--Ernest Hemingway
> ----------------------------------------------------------------------
> "In the midst of winter, I finally realized that deep within me there
> lay an invincible summer."--Albert Camus
> ----------------------------------------------------------------------
> 2001-2003 Golden Pen "Most Outspoken"  I am Writer, hear me Pontificate!
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>

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#16074 From: Samantha <Kmhjk5@...>
Date: Mon Apr 4, 2005 10:38 pm
Subject: RE: Duchenne Carriers kmhjk5
Offline
Send Email

I havent heard of carriers having memory problems, but my son has short term
memory problems. He can remember things from when he was 2(he is almost 9 now)in
vivid detail. He remembers things exactly as they occured from years ago, but
cant remember some things for more than a few minutes
                  SAMANTHA
                  SAHM to
                  Halee--6/19/92
                  Justin--4/14/96
         www.caringbridge.org/tx/justind
                  Kennedy--3/25/01
            "You Will Dream New Dreams"


--- "Adele" <jasona65@...> wrote:
I  also  haven’t  heard  of this particular thing.  I have read
where  the  DMD  boys  will  have  a tendency for have problems
remembering  things.  Research out of Columbia University in NY
have shown this.


Adele

_______________________________________________________________

From: mzmrize039@... [mailto:mzmrize039@...]
Sent: Monday, April 04, 2005 3:34 PM
To: md-list@yahoogroups.com
Subject: [MD-List] Duchenne Carriers


I  heard  a  while  ago  on  this  list that female carriers of
Duchenne  have  memory  problems.   If  this  is true, is there
anything  that  can be done for it?  Is there a medication that
helps?


Thanks for any help,

Diana Spatola

Mom to Vincent, age 16, Duchenne Muscular Dystrophy

   __________________________________________________________

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#16073 From: "Adele" <jasona65@...>
Date: Mon Apr 4, 2005 10:27 pm
Subject: RE: Duchenne Carriers navymom2josh
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I also haven’t heard of this particular thing. I have read where the DMD boys will have a tendency for have problems remembering things. Research out of Columbia University in NY have shown this.

Adele

From: mzmrize039@... [mailto:mzmrize039@...]
Sent: Monday, April 04, 2005 3:34 PM
To: md-list@yahoogroups.com
Subject: [MD-List] Duchenne Carriers

I heard a while ago on this list that female carriers of Duchenne have memory problems. If this is true, is there anything that can be done for it? Is there a medication that helps?

Thanks for any help,

Diana Spatola

Mom to Vincent, age 16, Duchenne Muscular Dystrophy

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#16072 From: knuckles 145 <knuckles145@...>
Date: Mon Apr 4, 2005 9:29 pm
Subject: Re: Duchenne Carriers knuckles145us
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I'm a carrier and have been told that I have an excellent memory.
(and yes I do remember alot)  I'm not as good as I used to be but I
think that is mainly due to middle age etc.

Beth M.

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#16071 From: di864@...
Date: Mon Apr 4, 2005 3:44 pm
Subject: Re: Duchenne Carriers dianne864
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Hi,

I have not heard this but would be interested to know if it is true, being a carrier myself.

Dianne

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#16070 From: Mary E Tyler <dejah@...>
Date: Mon Apr 4, 2005 8:43 pm
Subject: Re: Duchenne Carriers private_ice_...
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>I heard a while ago on this list that female carriers of Duchenne
>have memory problems.  If this is true, is there anything that can
>be done for it?  Is there a medication that helps?


Oh I can't RESIST:

I don't know. I can't remember.

dej
--
----------------------------------------------------------------------
I learned never to empty the well of my writing, but always stop when
there was still something there in the deep part of the well, and let
it refill at night from the springs that fed it.--Ernest Hemingway
----------------------------------------------------------------------
"In the midst of winter, I finally realized that deep within me there
lay an invincible summer."--Albert Camus
----------------------------------------------------------------------
2001-2003 Golden Pen "Most Outspoken"  I am Writer, hear me Pontificate!

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#16069 From: mzmrize039@...
Date: Mon Apr 4, 2005 3:33 pm
Subject: Duchenne Carriers dianaspatola418
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I heard a while ago on this list that female carriers of Duchenne have memory problems. If this is true, is there anything that can be done for it? Is there a medication that helps?

Thanks for any help,

Diana Spatola

Mom to Vincent, age 16, Duchenne Muscular Dystrophy

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#16068 From: "Adele" <jasona65@...>
Date: Mon Apr 4, 2005 4:31 pm
Subject: RE: new member -- new diagnosis navymom2josh
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Tanya.  So sorry to hear about your hubby.  I did a search of the MDA
site(www.mdausa.org) it's a great resource)  I found a reference to Distal
Myopathies.  It is also listed as Distal Muscular Dystrophy.  I've included
the link to the information.  http://www.mdausa.org/disease/dd.cfm

Most of us here have sons, with Duchenne Muscular Dystrophy or DMD, but we
can help with a lot of stuff.

You can find the location of the closest MDA clinic to you from the MDA
site.  Not Sure how imformed the Mayo Clinic is on the MD in question.

I'm Adele and my son, Jason is 19 and has DMD.  We live in Maryland.

-----Original Message-----
From: Tanya [mailto:elinandrewmom@...]
Sent: Monday, April 04, 2005 12:06 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] new member -- new diagnosis



Hello,

My name is Tanya and my husband's name is Greg.  We just were told
last week that he has muscular dystrophy -- evidently a rare kind???
He has distal myopathy.  We didn't get much information on it and
were referred to a neuromusucular specialist at Mayo clinic.  The way
we found out this is kind of interesting though.

Greg also has OCD and autism spectrum disease (rather mild as do both
of our sons.)  We went to a new, and highly recommeneded, psychatrist
who specializes in research in neurology to get some definitive
diagnosis because he seemed to be getting worse.

In the last 6 months or so Greg had started walking funny.  His right
foot would point down when he walked.  The doc noticed this during
the exam and kept talking about Greg's foot drop.  At the time I was
a little irritated because Greg said it didn't hurt and we were at
the doc about his brain not his foot.  Well, he didn't give us any
clues on what it could be but he sent us to Mayo clinic for an EMG.
He also had extensive lab work done and no problems were found.  But,
the EMG indicated that it was in the muscle and he referred us to a
specialist.

So we have no other info other than this and we are looking for
information to help us figure this out.  So I thought I'd join this
list to help us out!

Tanya







Yahoo! Groups Links

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#16067 From: "Tanya" <elinandrewmom@...>
Date: Mon Apr 4, 2005 4:06 pm
Subject: new member -- new diagnosis andrewsmom4100
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Hello,

My name is Tanya and my husband's name is Greg.  We just were told
last week that he has muscular dystrophy -- evidently a rare kind???
He has distal myopathy.  We didn't get much information on it and
were referred to a neuromusucular specialist at Mayo clinic.  The way
we found out this is kind of interesting though.

Greg also has OCD and autism spectrum disease (rather mild as do both
of our sons.)  We went to a new, and highly recommeneded, psychatrist
who specializes in research in neurology to get some definitive
diagnosis because he seemed to be getting worse.

In the last 6 months or so Greg had started walking funny.  His right
foot would point down when he walked.  The doc noticed this during
the exam and kept talking about Greg's foot drop.  At the time I was
a little irritated because Greg said it didn't hurt and we were at
the doc about his brain not his foot.  Well, he didn't give us any
clues on what it could be but he sent us to Mayo clinic for an EMG.
He also had extensive lab work done and no problems were found.  But,
the EMG indicated that it was in the muscle and he referred us to a
specialist.

So we have no other info other than this and we are looking for
information to help us figure this out.  So I thought I'd join this
list to help us out!

Tanya

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#16066 From: "apelofsky" <apelofsky@...>
Date: Sat Apr 2, 2005 8:41 pm
Subject: Correct CODEX Address apelofsky
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http://www.healthfreedomrights.com/

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#16065 From: Shelagh <samb4631@...>
Date: Sat Apr 2, 2005 1:43 am
Subject: Re: Need info on Texas samb4631
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Thank you Samatha & Joanne. I'll let you know what I come up with.

Shelagh

Joanne & David <jodave1@...> wrote:

Parent to Parent in Texas should be able to answer some of your questions or connect you with more parents in the part of the state you are considering.

http://www.main.org/txp2p/

Joanne

----- Original Message -----

From: Shelagh

To: MD-List@yahoogroups.com

Sent: Monday, March 28, 2005 4:26 PM

Subject: [MD-List] Need info on Texas

Hi everyone, my husband & I consdering to move to Texas to be near to family and I am trying to get info on what services are offered through the state, I called so far one organization and I was told they tell you are eligible, but you get next to zero because the waiting lists are so big or they don't offer it. Any info would be greatly appriciated from anyones experienes. Thank you.

Sam

Shelagh

Do you Yahoo!?
Yahoo! Small Business - Try our new resources site!

Shelagh

Do you Yahoo!?
Better first dates. More second dates. Yahoo! Personals

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#16064 From: "apelofsky" <apelofsky@...>
Date: Fri Apr 1, 2005 8:26 pm
Subject: CODEX apelofsky
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Please visit http://www.healthfreedomrights.com/default.php. They are
trying to control the over-the-counter nutrients you and yours are
taking.

Arnold

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#16063 From: "Joanne & David" <jodave1@...>
Date: Fri Apr 1, 2005 11:01 am
Subject: Re: Need info on Texas jodave486
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Parent to Parent in Texas should be able to answer some of your questions or connect you with more parents in the part of the state you are considering.

http://www.main.org/txp2p/

Joanne

----- Original Message -----

From: Shelagh

To: MD-List@yahoogroups.com

Sent: Monday, March 28, 2005 4:26 PM

Subject: [MD-List] Need info on Texas

Hi everyone, my husband & I consdering to move to Texas to be near to family and I am trying to get info on what services are offered through the state, I called so far one organization and I was told they tell you are eligible, but you get next to zero because the waiting lists are so big or they don't offer it. Any info would be greatly appriciated from anyones experienes. Thank you.

Sam

Shelagh

Do you Yahoo!?
Yahoo! Small Business - Try our new resources site!

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#16062 From: Jackie Torres <swpea503@...>
Date: Fri Apr 1, 2005 1:09 am
Subject: Re: ANA TITTER swpea503
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HY; Lisa

Thank you very much definitely, I am going

to always remember your words and the

best of all you cleared out my mind on the

decision i had to make, I hope that in a

near future i could see you in person and hug you

for your concerns with my son andI.Thanks...............

My best wishes for your son and you.of course now

i dont doubt that my son does not need a liver biopsy (he doesnt)

Concider me your new friend Jackie

DMD(MOM)

"Lisa A. Jones" <lisajonesrn@...> wrote:

Bradley 8 with DMD just had liver enzymes done. The ALT and AST were 500 and 700. The doctor told me it was not his liver because his bilirubin is normal and if it were his liver he would be jaundiced (yellow). He told me the these levels are broken down into liver, muscle and some other enzymes....they are not just for the liver. He said Bradley was high due to muscle. He told me these enzymes can actually be broken down where they can determine if it is liver or if it is muscle. I hope this helps. I didn't know it was broken down that way....I thought it was only an indication of liver damage before the doctor explained all this to me.

swpea503 <swpea503@...> wrote:
Can anyone please talk to me about this blood work results and if it has anything to do with DMD kids having it positive. is there anyone who knows about liver enzymes being high and having anything to do with an autoimmune liver disease, i am very concernabout this because my son is going through all this test right now with positive results. Thanks and i hope someone answer soon Jackie a desperate and concern mom.

Sincerely Yours,

Lisa A. Jones

Walk for Bradley http://mom-of-bradley.tripod.com/id22.html

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