Vitamin E &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp; Vegetable Oils are Natural Sources of Vitamin E

I took the poll.

The spam hasn't been too bad, but it's still annoying. Most people are savvy enough to delete, but some people trust the information being provided. It's also a waste of time trying to decide whether the e-mail is spam or what. It would be nice to ban known spammers, once identified.

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

From: rayharwood85730

To: MD-List@yahoogroups.com

Sent: Tuesday, January 30, 2007 11:39 PM

Subject: [MD-List] Ray Harwood does exist!

Okay folks... just to dispel any rumors that "Ray Harwood has left
the news group", I really do continue to wander about the face of the
earth and the Internet. In fact, several MD-List members have
successfully written me via E-mail per the information on the main MD-
List web page. I recently handled the E-mail address change of one
of the ORIGINAL members of the Yahoo-based MD-List who came over from
the old Data Basix E-mail-only list. It is always nice to chat with
and help out people with specific requests.

Not sure what all the hubbub on SPAM is about... based on my quck
look at recent postings, there's many more messages to the entire
list about "finding Ray Harwood" than there was "real spam".

I have set up a POLL for everyone to weigh in on the SPAM issue.
Please visit the poll and provide your input at:
http://health.groups.yahoo.com/group/MD-List/surveys?id=2429812

In about a week, I'll close the poll and decide on some action to
take. If there's a popular uprising and a clear desire by many of
you that I relinquish my (admittedly LOOSE) control and ownership of
the MD-List, I'll gladly do so. But so far I've only heard from a
handful of the list's 500+ members.

It's true, I no longer ACTIVELY participate in the group. I did
START the MD-List back in the early 90's before "Yahoo" was more than
a country bumpkin's backyard holler, hosted on my own small ISP
server via E-mail only.

I do check in on the list every couple of months and delete the
obviously rancid and sexually oriented posts and memberships, but
other than that, I'm not one to "pull in the reins" on an otherwise
mostly self-regulating bunch.

If anyone finds a SPECIFIC posting or member objectionable, please
WRITE TO ME at my well-publicized E-mail address of
Ray@RayHarwood.com, and I'll take a look.

Thanks to you all for your continued participation.

Regards,
Ray

#19405

From: "francescainboston" <francescainboston@...>
Date: Wed Jan 31, 2007 4:44 pm
Subject: Special Needs Equipment Swap via MitoAction

francescainb...

Offline

The Mitochondrial Disease Action Committee (MitoAction) is developing an exciting new way to help mito families. Do you have any therapeutic or adaptive equipment/toys that you no longer need or use? We would like to create an inventory to post on www.mitoaction.org so that families can swap special needs equipment. MitoAction will even pay for shipping if families need assistance.

To get this project started, please email Millie Rodriguez (nena1294@... ) with a description of your item(s), your state/town, and phone/email contact info. We hope to have the list up on the web by March so please email her ASAP!

Don't forget items like highchairs, bathseats, AFOs, augmentive communication tools, swings, etc., in addition to durable medical equipment like wheelchairs, walkers, etc.

Please Note: Mitochondrial Diseases are often mistaken for atypical forms of conditions, including autism, autonomic dysfunction, cerebral palsy, diabetes, fibromyalgia/CFS, seizure/stroke disorders, SIDS, and gastrointestinal dysfunction, in babies, children and adults of all ages. For more information, go to www.mitoaction.org .

Suz MitoAction www.mitoaction.org The Mitochondrial Disease Action Committee

Get energized!

#19404

From: "Candice Johnson" <johnsons-x-5@...>
Date: Wed Jan 31, 2007 1:56 pm
Subject: Re: TEST RESULTS

cjohnsonx5

Offline

I hope all remains stable with your heart. Keep us posted.

Candice

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

From: Chris Coulson

To: MD-List@yahoogroups.com

Sent: Saturday, January 27, 2007 8:52 PM

Subject: [MD-List] TEST RESULTS

Dear Family,
The dr. has called and told me the ct scan showed a bad heart
vavle and that it is not serious and that they will be running a echo
cardiagram this summer.

#19403

From: "Adele" <jasona65@...>
Date: Wed Jan 31, 2007 2:17 pm
Subject: RE: Re: Ray Harwood does exist!

navymom2josh

Online Now

Hey Ray, how’s it going? I’ve tried that link about the poll, but it just takes me to a page that says I’m not the moderator.

Adele

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of rayharwood85730
Sent: Tuesday, January 30, 2007 11:40 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] Ray Harwood does exist!

Okay folks... just to dispel any rumors that "Ray Harwood has left
the news group", I really do continue to wander about the face of the
earth and the Internet. In fact, several MD-List members have
successfully written me via E-mail per the information on the main MD-
List web page. I recently handled the E-mail address change of one
of the ORIGINAL members of the Yahoo-based MD-List who came over from
the old Data Basix E-mail-only list. It is always nice to chat with
and help out people with specific requests.

Not sure what all the hubbub on SPAM is about... based on my quck
look at recent postings, there's many more messages to the entire
list about "finding Ray Harwood" than there was "real spam".

I have set up a POLL for everyone to weigh in on the SPAM issue.
Please visit the poll and provide your input at:
http://health.groups.yahoo.com/group/MD-List/surveys?id=2429812

In about a week, I'll close the poll and decide on some action to
take. If there's a popular uprising and a clear desire by many of
you that I relinquish my (admittedly LOOSE) control and ownership of
the MD-List, I'll gladly do so. But so far I've only heard from a
handful of the list's 500+ members.

It's true, I no longer ACTIVELY participate in the group. I did
START the MD-List back in the early 90's before "Yahoo" was more than
a country bumpkin's backyard holler, hosted on my own small ISP
server via E-mail only.

I do check in on the list every couple of months and delete the
obviously rancid and sexually oriented posts and memberships, but
other than that, I'm not one to "pull in the reins" on an otherwise
mostly self-regulating bunch.

If anyone finds a SPECIFIC posting or member objectionable, please
WRITE TO ME at my well-publicized E-mail address of
Ray@RayHarwood.com, and I'll take a look.

Thanks to you all for your continued participation.

Regards,
Ray

#19399

From: "Diane" <dpro@...>
Date: Wed Jan 31, 2007 4:43 am
Subject: Re: Ray Harwood does exist!

dianeproc

Offline

WELCOME BACK RAY!!!! :)

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

From: rayharwood85730

To: MD-List@yahoogroups.com

Sent: Tuesday, January 30, 2007 10:39 PM

Subject: [MD-List] Ray Harwood does exist!

Okay folks... just to dispel any rumors that "Ray Harwood has left
the news group", I really do continue to wander about the face of the
earth and the Internet. In fact, several MD-List members have
successfully written me via E-mail per the information on the main MD-
List web page. I recently handled the E-mail address change of one
of the ORIGINAL members of the Yahoo-based MD-List who came over from
the old Data Basix E-mail-only list. It is always nice to chat with
and help out people with specific requests.

Not sure what all the hubbub on SPAM is about... based on my quck
look at recent postings, there's many more messages to the entire
list about "finding Ray Harwood" than there was "real spam".

I have set up a POLL for everyone to weigh in on the SPAM issue.
Please visit the poll and provide your input at:
http://health.groups.yahoo.com/group/MD-List/surveys?id=2429812

In about a week, I'll close the poll and decide on some action to
take. If there's a popular uprising and a clear desire by many of
you that I relinquish my (admittedly LOOSE) control and ownership of
the MD-List, I'll gladly do so. But so far I've only heard from a
handful of the list's 500+ members.

It's true, I no longer ACTIVELY participate in the group. I did
START the MD-List back in the early 90's before "Yahoo" was more than
a country bumpkin's backyard holler, hosted on my own small ISP
server via E-mail only.

I do check in on the list every couple of months and delete the
obviously rancid and sexually oriented posts and memberships, but
other than that, I'm not one to "pull in the reins" on an otherwise
mostly self-regulating bunch.

If anyone finds a SPECIFIC posting or member objectionable, please
WRITE TO ME at my well-publicized E-mail address of
Ray@RayHarwood.com, and I'll take a look.

Thanks to you all for your continued participation.

Regards,
Ray

#19398

From: "rayharwood85730" <Ray@...>
Date: Wed Jan 31, 2007 4:39 am
Subject: Ray Harwood does exist!

rayharwood85730

Offline

Okay folks... just to dispel any rumors that "Ray Harwood has left
the news group", I really do continue to wander about the face of the
earth and the Internet.  In fact, several MD-List members have
successfully written me via E-mail per the information on the main MD-
List web page.  I recently handled the E-mail address change of one
of the ORIGINAL members of the Yahoo-based MD-List who came over from
the old Data Basix E-mail-only list.  It is always nice to chat with
and help out people with specific requests.

Not sure what all the hubbub on SPAM is about... based on my quck
look at recent postings, there's many more messages to the entire
list about "finding Ray Harwood" than there was "real spam".

I have set up a POLL for everyone to weigh in on the SPAM issue.
Please visit the poll and provide your input at:
http://health.groups.yahoo.com/group/MD-List/surveys?id=2429812

In about a week, I'll close the poll and decide on some action to
take.  If there's a popular uprising and a clear desire by many of
you that I relinquish my (admittedly LOOSE) control and ownership of
the MD-List, I'll gladly do so.  But so far I've only heard from a
handful of the list's 500+ members.

It's true, I no longer ACTIVELY participate in the group.  I did
START the MD-List back in the early 90's before "Yahoo" was more than
a country bumpkin's backyard holler, hosted on my own small ISP
server via E-mail only.

I do check in on the list every couple of months and delete the
obviously rancid and sexually oriented posts and memberships, but
other than that, I'm not one to "pull in the reins" on an otherwise
mostly self-regulating bunch.

If anyone finds a SPECIFIC posting or member objectionable, please
WRITE TO ME at my well-publicized E-mail address of
Ray@..., and I'll take a look.

Thanks to you all for your continued participation.

Regards,
Ray

#19397

From: "Diane" <dpro@...>
Date: Wed Jan 31, 2007 4:37 am
Subject: Re:

dianeproc

Offline

We just need a new list. I can make a new list but would need volenteers to help run it.

Otherwise we just have to live with the way things are.

Diane

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

From: Rich Clingman

To: MD-List@yahoogroups.com

Sent: Tuesday, January 30, 2007 7:09 PM

Subject: Re: [MD-List]

> Does anyone know who is the owner or owners?

I have his name & an old email in archives at home (I'm at my office). I don't recall his name right now, but he lives in Arizona,
teaches at a college and his wife is a painter. He's the originator of MD-List around 11 years ago (he later moved it to Yahoo
Groups). His son passed away quite a while ago as well.

I rarely look at the MD-List messages, but the original no-subject message happened to catch my eye.

If no one else figures out who he is, I'll try to look him up tonight or tomorrow.

Rich Clingman

PS: I was asked how I was doing a couple months ago. I began a reply and then never sent it. :(

I'm doing well. Still being a computer geek. My 22yo adopted son Richard is living in Phoenix.

For those who don't know me, I don't have any disabilities, but have a heart for kids w/ disabilities and their parents. I created
www.DoctorBach.com to get some info out about NIV after finding there wasn't much info out there. I set it up in mid-2001 and
visisted Dr. John R. Bach for several days shortly after 9/11. I live in Ramona, CA (near San Diego). I also wrote some poems and
other stuff. A couple of my favorite poems...
www.livingfortoday.org/theclearestimage.htm
www.dmdpioneers.org/jeff.pdf
A poem I wrote for my brother-in-law's memorial...
www.poemsbyrich.com/jules.htm
And one I wrote for my son's first adoption...
www.livingfortoday.org/poetry/myson.htm
For some other poems including Tribute to the Forty of 93 (about 9/11 and United Flight 93)...
www.poemsbyrich.com/

#19392

From: "Charles D. Rhodes" <jedicharles@...>
Date: Wed Jan 31, 2007 1:22 am
Subject: Ownership of MD-List

jedimasterxp

Offline

I found Ray@..., I emailed him and volunteered to be owner until someone permanent can be found. Here is what I sent:

Dear Ray,

I am a member of MD-List Yahoo Group. The list needs moderators to help patrol spam but we need the owner of the group to assign at least one moderator. If you nolonger wish to be the owner, please assign a new one.

See http://help.yahoo.com/help/us/groups/members/members-07.html for help.

I am willing to be an owner until I find someone permanent.

Thanks,

Charles D. Rhodes

(User ID: jedimasterxp)

-----Original Message-----
From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com]On Behalf Of Rich Clingman
Sent: Tuesday, January 30, 2007 5:09 PM
To: MD-List@yahoogroups.com
Subject: Re: [MD-List]

> Does anyone know who is the owner or owners?

I have his name & an old email in archives at home (I'm at my office). I don't recall his name right now, but he lives in Arizona,
teaches at a college and his wife is a painter. He's the originator of MD-List around 11 years ago (he later moved it to Yahoo
Groups). His son passed away quite a while ago as well.

I rarely look at the MD-List messages, but the original no-subject message happened to catch my eye.

If no one else figures out who he is, I'll try to look him up tonight or tomorrow.

Rich Clingman

PS: I was asked how I was doing a couple months ago. I began a reply and then never sent it. :(

I'm doing well. Still being a computer geek. My 22yo adopted son Richard is living in Phoenix.

For those who don't know me, I don't have any disabilities, but have a heart for kids w/ disabilities and their parents. I created
www.DoctorBach.com to get some info out about NIV after finding there wasn't much info out there. I set it up in mid-2001 and
visisted Dr. John R. Bach for several days shortly after 9/11. I live in Ramona, CA (near San Diego). I also wrote some poems and
other stuff. A couple of my favorite poems...
www.livingfortoday.org/theclearestimage.htm
www.dmdpioneers.org/jeff.pdf
A poem I wrote for my brother-in-law's memorial...
www.poemsbyrich.com/jules.htm
And one I wrote for my son's first adoption...
www.livingfortoday.org/poetry/myson.htm
For some other poems including Tribute to the Forty of 93 (about 9/11 and United Flight 93)...
www.poemsbyrich.com/

#19390

From: "Rich Clingman" <NewRich@...>
Date: Wed Jan 31, 2007 1:09 am
Subject: Re:

bachniv

Offline

> Does anyone know who is the owner or owners?

I have his name & an old email in archives at home (I'm at my office). I don't
recall his name right now, but he lives in Arizona,
teaches at a college and his wife is a painter. He's the originator of MD-List
around 11 years ago (he later moved it to Yahoo
Groups). His son passed away quite a while ago as well.

I rarely look at the MD-List messages, but the original no-subject message
happened to catch my eye.

If no one else figures out who he is, I'll try to look him up tonight or
tomorrow.

Rich Clingman

PS: I was asked how I was doing a couple months ago. I began a reply and then
never sent it. :(

I'm doing well. Still being a computer geek. My 22yo adopted son Richard is
living in Phoenix.

For those who don't know me, I don't have any disabilities, but have a heart for
kids w/ disabilities and their parents. I created
www.DoctorBach.com to get some info out about NIV after finding there wasn't
much info out there. I set it up in mid-2001 and
visisted Dr. John R. Bach for several days shortly after 9/11. I live in Ramona,
CA (near San Diego). I also wrote some poems and
other stuff. A couple of my favorite poems...
     www.livingfortoday.org/theclearestimage.htm
     www.dmdpioneers.org/jeff.pdf
A poem I wrote for my brother-in-law's memorial...
     www.poemsbyrich.com/jules.htm
And one I wrote for my son's first adoption...
     www.livingfortoday.org/poetry/myson.htm
For some other poems including Tribute to the Forty of 93 (about 9/11 and United
Flight 93)...
     www.poemsbyrich.com/

#19385

From: "Joanne & David Wechsler" <jodavew@...>
Date: Tue Jan 30, 2007 7:57 pm
Subject: Re:

jodave486

Offline

that was pretty funny.

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

From: Greg Evans

To: MD-List@yahoogroups.com

Sent: Monday, January 29, 2007 8:20 PM

Subject: RE: [MD-List]

bath accessories? I liked that.

-----Original Message-----
From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com]On Behalf Of Charles D. Rhodes
Sent: Monday, January 29, 2007 4:52 PM
To: MD-List@yahoogroups.com
Subject: RE: [MD-List]

Probably in "Bath Accessories", LOL

-----Original Message-----
From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com]On Behalf Of Greg Evans
Sent: Monday, January 29, 2007 7:22 AM
To: MD-List@yahoogroups.com
Subject: RE: [MD-List]

whats the BA in?

THis thing is amazing, just graduated without even turning up a single day. Now
fully qualified in a BA and looking to apply for a raise! I'll keep you guys
posted, but if any of u interested in getting a BA or something as well
without having to actually go through all the leg work i highly recommend these
ppl 1 801-697-0461

#19384

From: Sam April <sam_prl@...>
Date: Tue Jan 30, 2007 5:31 pm
Subject: Alternative / Complementary Medicine

sam_prl

Offline

http://www.umm.edu/altmed/ConsConditions/MuscularDystrophycc.html

Please also go through the ' RELATED INFORMATION ' on the rt side

Food fight? Enjoy some healthy debate
in the Yahoo! Answers Food Drink Q&A.

#19381

From: Sam April <sam_prl@...>
Date: Tue Jan 30, 2007 9:12 am
Subject: RE: Alternative Therapies for MD

sam_prl

Offline

Dear Mr. Charles,
I am also one, suffering from MD (LGMD) & struggling out surviving technicks for a comfortable life. Instead of sitting idle & waiting for the cure to come to me , thought of trying out by other's experiences /experiments & share the same. A drowning person does not care who throws the straw to him, a policeman or a law officer or you. Survival is the key. Come what may, I will try to get normal by the end of this year. That,s positive attitude. Very very important.
Regards.

God bless

"Charles D. Rhodes" <jedicharles@...> wrote:

Are you for real? The doctor on doctoryourself.com is a PhD in "Human Ethology" formerly "comparative psychology". I can't see how someone with that background has any idea of what might help MD... It's like a police officer trying to preside over a court of law...

-----Original Message-----
From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com]On Behalf Of Sam April
Sent: Monday, January 29, 2007 9:03 AM
To: MD-List@yahoogroups.com
Subject: [Norton AntiSpam] [MD-List] Alternative Therapies for MD

Dear all,

It is really sad to see that as of now there does not seem to be any cure for any form of MDs. In the near future stem cell or tweaking the chromosomes at genetic level seems to be a ray of hope. My journey as a case in MD (LGMD) started at the age of about 34 (now 53). Still walking but with great difficulty. Getting up from a chair or toilet seat is a nightmare.

I am not going to go without fighting, so got busy searching for a cure. There I found other methods which are homeopathy, ayurveda, nutritional therapy & many more.

I am also keeping my self updated on the latest info on stem cell research or any other form of cure for MDs.

http://www.abchomeopathy.co m/homeopathy.htm

http://www.ayur.com/about.html

http://www.nutritionaltherapy.co.uk

Some interesting articles (from the above 3 fields of medicines to begin with) I found which I am trying to put to trial to get firsthand experience for the cure. After searching & reading for many weeks I have started my trials from today for a journey backwards (to normal), I hope.

The nutritional therapy seems to be promising. Follow the link�

http://www.doctoryourself.com/dystrophy.html

I have started with green gram sprouts, wheat sprouts, soya beans sprouts, sunflower seeds, flax seeds, and garlic, twice a day. I eat it raw with a pinch of salt & lemon juice (Vit C) for taste. I will be having multi vitamin capsule with selenium once a week as a boost.

Natural Vitamin E.       Sunflower seeds & flax seeds, wheat sprouts.

Selenium.                     ~~Flax seeds & garlic~~

~~Lecithin                        Sun flower seeds, Soya beans~~

~~Choline                        Eggs, soybeans, peanuts, oatmeal.~~

~~For best results, selenium should be taken with vitamin E~~

~~Selenium~~: Brewer's yeast and wheat germ, liver, butter, fish (mackerel, tuna, halibut, flounder, herring, smelts) and shellfish (oysters, scallops and lobster), garlic, whole grains, sunflower seeds, and Brazil nuts are all good sources of selenium

Lecithin: over 99% of the lecithin used commercially comes from soybeans?

Choline                        Eggs, soybeans, cabbage, peanuts, cauliflower, liver, oatmeal

~~Vitamin E         Vegetable Oils are Natural Sources of Vitamin E~~

                             In foods, the most abundant sources of vitamin E are vegetable oils such as palm oil, sunflower, corn, soybean and olive oil. Nuts, sunflower seeds, seabuckthorn berries, and wheat germ are also good sources. Other sources of vitamin E are whole grains, fish, peanut butter, and green leafy vegetables. Fortified breakfast cereals are also an important source of vitamin E in the United States. Although originally extracted from wheat germ oil, most natural vitamin E supplements are now derived from vegetable oils, usually soybean oil.

~~The actual content of Vitamin E for rich sources is stated in the following list:^[2]~~

~~Wheat germ oil (215.4 mg/100 g)~~
~~Sunflower oil (55.8 mg/100 g)~~
~~Hazelnut (26.0 mg/100 g)~~
~~Walnut oil (20.0 mg/100 g)~~
~~Peanut oil (17.2 mg/100 g)~~
~~Soybean oil (14.6 mg/100 g)~~
~~Olive oil (12.0 mg/100 g)~~
~~Peanut (9.0 mg/100 g)~~
~~Pollard (2.4 mg/100 g)~~
~~Corn (2.0 mg/100 g)~~
~~Asparagus (1.5 mg/100 g)~~
~~Oats (1.5 mg/100 g)~~
~~Soybean (1.2 mg/100 g)~~
~~Chestnut (1.2 mg/100 g)~~
~~Coconut (1.0 mg/100 g)~~
~~Tomatoes (0.9 mg/100 g)~~
~~Carrots (0.6 mg/100 g)~~

It's here! Your new message!
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#19379

From: "Greg Evans" <gregevans01@...>
Date: Tue Jan 30, 2007 1:20 am
Subject: RE:

gregevans01@...

bath accessories? I liked that.

-----Original Message-----
From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com]On Behalf Of Charles D. Rhodes
Sent: Monday, January 29, 2007 4:52 PM
To: MD-List@yahoogroups.com
Subject: RE: [MD-List]

Probably in "Bath Accessories", LOL

-----Original Message-----
From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com]On Behalf Of Greg Evans
Sent: Monday, January 29, 2007 7:22 AM
To: MD-List@yahoogroups.com
Subject: RE: [MD-List]

whats the BA in?

THis thing is amazing, just graduated without even turning up a single day. Now
fully qualified in a BA and looking to apply for a raise! I'll keep you guys
posted, but if any of u interested in getting a BA or something as well
without having to actually go through all the leg work i highly recommend these
ppl 1 801-697-0461

#19378

From: Vikki Stefans <vstefans@...>
Date: Tue Jan 30, 2007 1:54 am
Subject: Re: AFO

vstefans

Offline

Mmmm- I would not just accept skin breakdown - you probably should
increase wearing time gradually, and have any spots hat hurt or leave
persistent skin marks adjusted. Just a "sock mark" type of thing is OK -
it should go away in about an hour even on a fair skinned person, but a
mark that does not blanch when you press it, hurts, or lasts longer than
that needs some intervention.

Re the car - if taking off the AFO is inconvenient, most people can
compensate with hip and knee movement if an AFO is not flexible enough at
the ankle; adjusting the seat a bit should make the pedals still reachable
that way. Ankle movement is actually not absolutely needed to operate gas
and brake pedals. Try it with the car parked and either off or in neutral
first to make sure that works for you without having to look at your foot.
If that does not seem like it is going to work, an OT who specializes in
adaptive driving may be able to help with simple modifications.

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 Wed, 24 Jan 2007, Lanae wrote:

> Hi, I just got an afo for my right foot. I am seeking info on what to
> expect, any tips for comfort (socks, shoes).
>
> I was told to expect some skin break down, is there anything I should
> know about this?
>
> Also I think I may need to modify my car as I have always used my right
> toes to be able to reach the gas peddal and now I am flat footed and it
> is going to be really hard to drive.

Reply | Forward | Messages in this Topic (4)

#19377

From: Andrea Gapko <gapko17@...>
Date: Tue Jan 30, 2007 12:41 am
Subject: Re: update on my kids

gapko17

Offline

Terri,

Are all of your boys on heart meds--ACE inhibitors (perindopril or lisinopril, captopril, etc.) and beta-blockers (metoprolol, toprol XL, etc.), digoxin, or any thing else? At their ages, I think at least the first two are imperative. I'm not so sure about the digoxin--may help or hurt. One of my kids was taken off about 4 years ago, the other was left on. Don't know why, didn't think to ask on this one.

Andrea gapko

Terri Trensey <momdmd@...> wrote:

Hi
for those of you who don't know me, I am Terri, I am the mother of 3 boys
with DMD. My sons are Nathan who is 19, a senior in high school (to graduate
in May) and who also has ADD. Nathan uses a power wheelchair and is somewhat
active in school. He is in ROT, on the honor roll and has taken it on
himself to apply for collage as well as becoming aware of the programs he
needs (such as voc rehab). Well. Nathan is now suddenly no longer interested
in college, and that could put a wrinkle on his enrollment if he were to
decide to go after all if he doesn't apply now thinking he isn't going.
sigh. Much of this has to do with his gf, well ex gf. she realized how
serious the MD can be and that she isn't sure she would be able to take it
if he were to die. I felt very badly for Nathan and also for her, because
she was very young (15). I know adults who can't even handle this
information.

My youngest son is Christian, he has ADD and OPD along with his DMD. He uses
a manual wheelchair but will be getting a power chair as soon as we resubmit
his PA. When we went through recertification they put him under the wrong
medicaid program so well, you know how easily they can mess up a LOT of our
stuff with a simple mistake like that. so far it has effected his nursing,
transportation, meds and of course the wheelchair. I just replaced his
mattress with an air mattress, no... not the good ones lol. He has been
having accidents of both types and I couldn't continue to let him sleep in
the bed. I couldn't imagine any way to clean this out of the mattress and
with the air one it can be wiped. I just don't like (forgot) the way that
they can leak air (or as they said the mattress can stretch) and then have
to keep adding air. I just don't want to try for a hospital bed for him
until we can get one his brothers can tolerate. I am hoping to then get one
that they have so we don't have to go through this (the kids not wanting to
sleep in their beds) with him as well.

Lastly there is Alex who is 15. Last year to the day, OH, well (look at the
time) ok it is a day after he went in for surgery. Alex went in for spinal
fusion. within a week after an illus he suffered a perforation to his colon
(which turned out to be from an ulcer on his colon) which led to perintitous
..... I think.... (ok I lost it half way through the word, it is a stomach
infection), followed by another back surgery (to clean out) after his white
count wouldn't go down and they suspected infection. Then he got ARDS (acute
or adult respiratory distress syndrome.) He had to have a trach to help with
that but given the DMD his muscles that operate the lungs were not strong
enough to reverse the surgery. Lastly he had another colon operation which
also led to his ostomy. He seems to keep getting Attaleticus (I skipped the
2 chest tubes) and pneumonia which the nurses lump together as pneumonia. He
was been back to the hospital in August and November. Thursday he was put in
the hospital again (after a night of iv) because they suspected that he
might be getting renal failure. No it is NOT the eyes (surprise to those who
never suspected that it COULD be) and actually means that they thought that
his kidneys were failing. Actually, it was more probably more related to
settling of fluid (surprise surprise after about 4 or 5 thousand cc of fluid
with not so much output), and he does have a urinary infection but its
probably more related to his heart. I am not sure I mentioned it to the list
but Alex was diagnosed with Cardio Myopothy in November and I was told that
his heart is VERY enlarged. Now isn't much better and the pediatrician has
mentioned Hospice. As you can imagine I am very much in shock and not
wanting to waste this time, still facing a bit of depression over this news.
I could be worse, but I have been fortunate to know that this could happen.
It doesn't take away from the fact that I love my son and don't want
anything to happen to him, but the fact is that if he has a heart attack, he
likely will not recover. His heart is just not strong enough. It also put a
push in to test my other two sons. He came home from the hospital on
Saturday. He has mentioned that the Cardiologist said that we HAVE to make
sure that Christian gets checked annually. I imagine he expects that Nathan
is and just wanted to make sure that Christian does since they don't always
at that age but I am also wondering if they found anything even slightly out
of the ordinary with him.

Terri

__________________________________________________________
From photos to predictions, The MSN Entertainment Guide to Golden Globes has
it all. http://tv.msn.com/tv/globes2007/?icid=nctagline1

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Reply | Forward | Messages in this Topic (6)

#19376

From: "Charles D. Rhodes" <jedicharles@...>
Date: Mon Jan 29, 2007 9:49 pm
Subject: RE: Alternative Therapies for MD

jedimasterxp

Offline

Are you for real? The doctor on doctoryourself.com is a PhD in "Human Ethology" formerly "comparative psychology". I can't see how someone with that background has any idea of what might help MD... It's like a police officer trying to preside over a court of law...

-----Original Message-----
From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com]On Behalf Of Sam April
Sent: Monday, January 29, 2007 9:03 AM
To: MD-List@yahoogroups.com
Subject: [Norton AntiSpam] [MD-List] Alternative Therapies for MD

Dear all,

It is really sad to see that as of now there does not seem to be any cure for any form of MDs. In the near future stem cell or tweaking the chromosomes at genetic level seems to be a ray of hope. My journey as a case in MD (LGMD) started at the age of about 34 (now 53). Still walking but with great difficulty. Getting up from a chair or toilet seat is a nightmare.

I am not going to go without fighting, so got busy searching for a cure. There I found other methods which are homeopathy, ayurveda, nutritional therapy & many more.

I am also keeping my self updated on the latest info on stem cell research or any other form of cure for MDs.

http://www.abchomeopathy.co m/homeopathy.htm

http://www.ayur.com/about.html

http://www.nutritionaltherapy.co.uk

Some interesting articles (from the above 3 fields of medicines to begin with) I found which I am trying to put to trial to get firsthand experience for the cure. After searching & reading for many weeks I have started my trials from today for a journey backwards (to normal), I hope.

The nutritional therapy seems to be promising. Follow the link�

http://www.doctoryourself.com/dystrophy.html

I have started with green gram sprouts, wheat sprouts, soya beans sprouts, sunflower seeds, flax seeds, and garlic, twice a day. I eat it raw with a pinch of salt & lemon juice (Vit C) for taste. I will be having multi vitamin capsule with selenium once a week as a boost.

Natural Vitamin E.       Sunflower seeds & flax seeds, wheat sprouts.

Selenium.                     ~~Flax seeds & garlic~~

Lecithin                        Sun flower seeds, Soya beans

Choline                        Eggs, soybeans, peanuts, oatmeal.

For best results, selenium should be taken with vitamin E

Selenium: Brewer's yeast and wheat germ, liver, butter, fish (mackerel, tuna, halibut, flounder, herring, smelts) and shellfish (oysters, scallops and lobster), garlic, whole grains, sunflower seeds, and Brazil nuts are all good sources of selenium

Lecithin: over 99% of the lecithin used commercially comes from soybeans?

Choline                        Eggs, soybeans, cabbage, peanuts, cauliflower, liver, oatmeal

Vitamin E         Vegetable Oils are Natural Sources of Vitamin E

                             In foods, the most abundant sources of vitamin E are vegetable oils such as palm oil, sunflower, corn, soybean and olive oil. Nuts, sunflower seeds, seabuckthorn berries, and wheat germ are also good sources. Other sources of vitamin E are whole grains, fish, peanut butter, and green leafy vegetables. Fortified breakfast cereals are also an important source of vitamin E in the United States. Although originally extracted from wheat germ oil, most natural vitamin E supplements are now derived from vegetable oils, usually soybean oil.

The actual content of Vitamin E for rich sources is stated in the following list:^[2]

Wheat germ oil (215.4 mg/100 g)
Sunflower oil (55.8 mg/100 g)
Hazelnut (26.0 mg/100 g)
Walnut oil (20.0 mg/100 g)
Peanut oil (17.2 mg/100 g)
Soybean oil (14.6 mg/100 g)
Olive oil (12.0 mg/100 g)
Peanut (9.0 mg/100 g)
Pollard (2.4 mg/100 g)
Corn (2.0 mg/100 g)
Asparagus (1.5 mg/100 g)
Oats (1.5 mg/100 g)
Soybean (1.2 mg/100 g)
Chestnut (1.2 mg/100 g)
Coconut (1.0 mg/100 g)
Tomatoes (0.9 mg/100 g)
Carrots (0.6 mg/100 g)

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#19375

From: "Charles D. Rhodes" <jedicharles@...>
Date: Mon Jan 29, 2007 9:51 pm
Subject: RE:

jedimasterxp

Offline

Probably in "Bath Accessories", LOL

-----Original Message-----
From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com]On Behalf Of Greg Evans
Sent: Monday, January 29, 2007 7:22 AM
To: MD-List@yahoogroups.com
Subject: RE: [MD-List]

whats the BA in?

THis thing is amazing, just graduated without even turning up a single day. Now
fully qualified in a BA and looking to apply for a raise! I'll keep you guys
posted, but if any of u interested in getting a BA or something as well
without having to actually go through all the leg work i highly recommend these
ppl 1 801-697-0461

#19373

From: Sam April <sam_prl@...>
Date: Mon Jan 29, 2007 5:03 pm
Subject: Alternative Therapies for MD

sam_prl

Offline

http://www.abchomeopathy.com/homeopathy.htm

Dear all,

It is really sad to see that as of now there does not seem to be any cure for any form of MDs. In the near future stem cell or tweaking the chromosomes at genetic level seems to be a ray of hope. My journey as a case in MD (LGMD) started at the age of about 34 (now 53). Still walking but with great difficulty. Getting up from a chair or toilet seat is a nightmare.

I am not going to go without fighting, so got busy searching for a cure. There I found other methods which are homeopathy, ayurveda, nutritional therapy & many more.

I am also keeping my self updated on the latest info on stem cell research or any other form of cure for MDs.

http://www.ayur.com/about.html

http://www.nutritionaltherapy.co.uk

Some interesting articles (from the above 3 fields of medicines to begin with) I found which I am trying to put to trial to get firsthand experience for the cure. After searching & reading for many weeks I have started my trials from today for a journey backwards (to normal), I hope.

The nutritional therapy seems to be promising. Follow the link�

http://www.doctoryourself.com/dystrophy.html

I have started with green gram sprouts, wheat sprouts, soya beans sprouts, sunflower seeds, flax seeds, and garlic, twice a day. I eat it raw with a pinch of salt & lemon juice (Vit C) for taste. I will be having multi vitamin capsule with selenium once a week as a boost.

Natural Vitamin E. Sunflower seeds & flax seeds, wheat sprouts.

Selenium. Flax seeds & garlic

Lecithin Sun flower seeds, Soya beans

Choline Eggs, soybeans, peanuts, oatmeal.

For best results, selenium should be taken with vitamin E

Selenium: Brewer's yeast and wheat germ, liver, butter, fish (mackerel, tuna, halibut, flounder, herring, smelts) and shellfish (oysters, scallops and lobster), garlic, whole grains, sunflower seeds, and Brazil nuts are all good sources of selenium

Lecithin: over 99% of the lecithin used commercially comes from soybeans?

Choline Eggs, soybeans, cabbage, peanuts, cauliflower, liver, oatmeal

Vitamin E Vegetable Oils are Natural Sources of Vitamin E

In foods, the most abundant sources of vitamin E are vegetable oils such as palm oil, sunflower, corn, soybean and olive oil. Nuts, sunflower seeds, seabuckthorn berries, and wheat germ are also good sources. Other sources of vitamin E are whole grains, fish, peanut butter, and green leafy vegetables. Fortified breakfast cereals are also an important source of vitamin E in the United States. Although originally extracted from wheat germ oil, most natural vitamin E supplements are now derived from vegetable oils, usually soybean oil.

The actual content of Vitamin E for rich sources is stated in the following list:^[2]

Wheat germ oil (215.4 mg/100 g)
Sunflower oil (55.8 mg/100 g)
Hazelnut (26.0 mg/100 g)
Walnut oil (20.0 mg/100 g)
Peanut oil (17.2 mg/100 g)
Soybean oil (14.6 mg/100 g)
Olive oil (12.0 mg/100 g)
Peanut (9.0 mg/100 g)
Pollard (2.4 mg/100 g)
Corn (2.0 mg/100 g)
Asparagus (1.5 mg/100 g)
Oats (1.5 mg/100 g)
Soybean (1.2 mg/100 g)
Chestnut (1.2 mg/100 g)
Coconut (1.0 mg/100 g)
Tomatoes (0.9 mg/100 g)
Carrots (0.6 mg/100 g)

It's here! Your new message!
Get new email alerts with the free Yahoo! Toolbar.

#19372

From: "Greg Evans" <gregevans01@...>
Date: Mon Jan 29, 2007 3:22 pm
Subject: RE:

gregevans01@...

whats the BA in?

THis thing is amazing, just graduated without even turning up a single day. Now
fully qualified in a BA and looking to apply for a raise! I'll keep you guys
posted, but if any of u interested in getting a BA or something as well
without having to actually go through all the leg work i highly recommend these
ppl 1 801-697-0461

#19370

From: "Chris Coulson" <robinc1961@...>
Date: Sun Jan 28, 2007 2:52 am
Subject: TEST RESULTS

robinc1961

Offline

Dear Family,
      The dr. has called and told me the ct scan showed a bad heart
vavle and that it is not serious and that they will be running a echo
cardiagram this summer.