---
hi Alla -

i appreciate your reply.

i am a full time wheelchair user.  i havent stood up or walked in
nearly 30 yrs now.

transferring for me is becoming very difficult.  the lordosis is the
main factor, but, my right wrist/thumb is still in tremendous pain
and now is beginning deformation.

center of gravity is the tummy/pelvis areas.  atleast for me, anyway.

commenting on the vits/supps.
you surmized exactly what needs to be said here ---

for your daughters, you dont want them to lose their hope for what
they are taking.

but, on the realistic side -   your daughters, myself and others,
who take vits/supps on a daily basis, in larger doses than
recommended, know that it works, to some extent.

i know they give me a modecom of strength to make thru each day.  if
thats all i get -then its a great treatment for me!

linda










  In fshsociety@yahoogroups.com, "Alla Shevelyova"
<alla.shevelyova@...> wrote:
>
> Thank you Linda, you said my words and in much better English.  We
have at
> least two teenagers here on this board who are very active in
looking for
> some supplemental help (of course, it is not a cure but we almost
never have
> cure with
> prescribed medications also) at least for general health - my
daughter Anna
> and Frogspor - and I really do not want them to lose their hope
for what
> they are taking.
>
> This disease is really terrible, and you often feel that your
condition and
> appearance
> couldn't be worse and it always could. If you suffer from bending
forward
> when walking
> and not being able to straighten your body, remember that you are
lucky
> because you can
> use cane or walker. My daughter has so severe lordosis that she
almost
> falling BACKward
> and can not use any supportive devices. Seating also is a big
problem.
>
> BTW, Linda, how you help yourself walking with lordosis? Anna
actually does
> not walk,
> she can transfer her deformed body with tremendous effort for
several feet.
> When
> I try to imagine where her center of gravity is I fail.
>
> Alla
>
>
>
> On 3/1/07, mytishtash <mysteryguest101@... > wrote:
> >
> >   all right,,,,thats it...
> > im through with reading all of the "rubbish", "false claims", and
> > lastly,
> > Mimi's claim that those of us that use supplements/nutritionals
are
> > in a "stage of DENIAL".
> >
> > how dare you!
> >
> > not only does that statement just plain insult me -- it damages
my
> > INTEGRITY.
> > how?
> > because you are saying that what im doing is "folly" and
basically,
> > IMHO, points the finger at me that i really dont have a clue as
to
> > what im doing. thanks a lot....
> >
> > ive tried for a long time to get people to understand that
taking in
> > vits/supps is a very good thing and its not a cure.
> > i know for a FACT that the vits/supps i take DO HELP ME.
> >
> > i am not in a stage of denial.
> >
> > to profess that "our" urine, my urine, could be an expensive
waste
> > of what my body doesnt absorb, is just bunk.
> >
> > our bodies will always get rid of excess, no matter what we
injest.
> > to point the bad finger at vits/supps is absurd.
> >
> > if that were the case, then please, stop eating all the fruits
and
> > veggies and red meat. after all, they all contain whats in the
> > vits/supps, just at a different level dose. and im sure that
when u
> > pee it out, it could be measured that there was excess. does that
> > mean that your grocery bill and dining out bills point to bloated
> > excess and you should stop eating?
> > its "folly" to eat the fruits, veggies and meats. just as absurd.
> >
> > i, for one, have NEVER said that the vits/supps are a cure. ive
> > offered that its a viable treatment for those whose bodies NEED
the
> > vits/supps. some of you out there, due to a great diet, dont need
> > the supps and vits.
> > others- just need a little. i need a lot!
> > since most food is toxic to my system, i NEED them!
> >
> > i am replacing what my own system doesnt create on its own and/or
> > get in my diet.
> >
> > im sure that the article was a bit skewed in its wording about
> > certain claims.
> > however -- the fact remains that most of the vits/supps mentioned
> > are the same ones that myself, wayne, steve, and others that
havent
> > been here for a while, all take and do get some relief/results.
> >
> > im sick and tired of the wholly negative opinion about
vits/supps on
> > this board. at least im putting good stuff into my body -
readying
> > it for the day that IF and WHEN a treatment or cure is out there-
  my
> > body will be healthy enough to accept it.
> >
> > can the rest of u say that your bodies are healthy enough to
accept
> > a treatment/cure? i wonder...
> >
> > ive been treating myself for nearly 4 yrs now and the times that
ive
> > fasted or just plain decided that i no longer needed the
vits/supps
> > had drastic, irreversable damage.
> > i still havent recovered the losses.
> >
> > to add to the benefits of the vits/supps is light, moderate
exercise
> > of some sort. the whole package just makes one feel better.
> >
> > unfortunately, i can no longer exercise as my lordosis has
become so
> > severe, im in fear of paralysis. but, i do know the benefit of
> > exercise and i encourage anyone out there to find a good program.
> >
> > the bottom line is this
> > everyone's fsh body is different.
> > BUT - the common thread is that, atleast for fsh, our bodies dont
> > produce the needed "things" that normal bodies produce. i agree
> > with the article that because of that particular malnutrition, it
> > exaserbates the fsh md to a larger degree.
> >
> > the object lesson is to put something in to help replace what
isnt
> > there. the vits/supps are it for now, until something better is
> > offered.
> >
> > stem cell research, et al.? -- maybe... but, remember this.
> > if your body isnt healthy it will be harder for it to accept a
> > possible treatment/cure.
> >
> > i know im healthy- i havent had a "cold" "flu" in yrs.
> >
> > just my thoughts.
> >
> > linda
> >
> > .
> > >
> > > To do otherwise is nothing but a form of Escapism. Perhaps for
> > those
> > > who entertain hopes of cures for dystrophic diseases such as
FSHD
> > > through supplements/nutritionals – these folk are in a stage of
> > > DENIAL.
> > >
> > > /Mimi
> > >
> > >
> >
> >
> >
>
>
> [Non-text portions of this message have been removed]
>

Your dad sounds like a great guy, Chris.

I am a few years older than he and have some minor pains in my hip so
I am wonderig what his "hip poping" problems are, exactly.

From time to time, TLA and I talk about RVing, but wonder whether we
would be able to handle driving such a big rig and whether we could
do the setting up and taking down.  How is your father handling
those?  Does he have his RV modified in any way?  If so, how?

Paul, the gradually weakening traveler with a gimpy wife





--- In fshsociety@yahoogroups.com, "christa" <uccricketts@...> wrote:
>
> --- Hi Phil and Robert
>
> My father served in the Navy untill 1978 when he retired. He too
> belived he had this earlyer but no one could seem to find it. He
> finally was diagnosed in 1990 through muscual bi-opsie from
shoulder
> and leg.
>  He was able to get out of the service before they made him leave
for
> medical reason but retired due to personal hardship which was not
> easy either. The Navy was his life .
>  At 67 he still walks but is starting to have hip poping problems.
> Falling twice. Lots of pain. He says if it wasn`t for the military
he
> would not beable to with stand the pain.
>  But he is greatfull for what life he has and for as long as he has
> it. Untill he can no more he now travels with his love in their
class-
> c rv to the warm states for now. The cold is too much for him to
bare
> in Indiana...
>  My best to you and I hope that you have a life full of the good
> things and love xox all my best...Navy bratt
>
>
>  In fshsociety@yahoogroups.com, robert kupps <nhiskups@> wrote:
> >
> > Hi Phil, just a side note, in 1993 I too got out of a rigorous
> > production management job, took two years off to get a degree in
> Reuse
> > and Recycling Management, work in a Business Environment
Assistance
> > Center, then worked for out local County in their Pollution
> Prevention
> > (P2) Program until I was laid off three years ago. I then
retired.
> Nice
> > to see there's other environmental persons working out there.
> > robert k
> >
> > phillips1223 wrote:
> >
> > > s_z, I served in the Marine Corps from January of 1975 until my
> > > medical retirement (because of being diagnosed with muscular
> > > dystrophy) in September of 1990. I was a CH-53D pilot. I was
also
> > > an instructor pilot in the Pensacola, Florida area (where I now
> > > live), flying the TH-57. I was a West Coast Marine, and did my
> > > overseas time on Okinawa (3 deployments). I managed to mostly
stay
> > > off ships during my career.
> > >
> > > Looking back, I likley had muscular dystrophy early on, if not
> > > before I entered the military. I had mild symptoms, even back
> > > then. But, like everyone else, I compensated well. At one time,
I
> > > could score very highly on the physical fitness test (PFT), but
my
> > > score kept on dropping over the years. By the mid-1980s, I was
> > > having difficulty even obtaining a minimum passing PFT score. I
> was
> > > in my early 30s by then, and I attributed this to aging and not
> > > working out enough. It was the muscular dystrophy that was
causing
> > > this, however. In 1986, I failed a PFT, and started limping
badly.
> > > I went through every medical test you could think of at the
Naval
> > > Hospitals in Long Beach abnd San Diego; they couldn't figure it
> > > out. But, I was given waivers to keep serving. By 1989, I
couldn't
> > > hide the fact that something was there, and I went to Bethesda,
> > > where they found the MD. That was in January of 1990, and I was
> > > retired by September.
> > >
> > > I wasn't that disabled overall in 1990; however, I started
using a
> > > Jazzy powerchair full time in early 2006. I am hanging in there
as
> > > best I can. I started working in environmental consulting in
1992,
> > > and have been with my current employer for over 14 years.
> > >
> > > You know, the symptoms didn't make it harder to fly the
> helicopter,
> > > but the range of motion impairments made it hard to reach some
of
> > > the overhead switches in the cockpit. I always attributed this
> > > to "just being stiff" and asked the other pilot to flip the
> switches
> > > I could not reach. The throttles in the CH-53 were overhead,
too,
> > > and I used to throw my arm up to grab them, in order to reach
> them.
> > >
> > > --- In fshsociety@yahoogroups.com
> > > <mailto:fshsociety%40yahoogroups.com>, s_zawrotny <no_reply@>
> wrote:
> > > >
> > > > Phil,
> > > > What years did you serve and where? I was in during the Ronald
> > > Reagan
> > > > years and experienced the transition from people hating
military
> > > men
> > > > and calling us baby killers to being respected by people.
> > > >
> > > > Did you have symptoms of FSHD while a helo pilot? I know some
of
> > > those
> > > > helocopters require both hands and both feet working
> > > simultaneously.
> > > I
> > > > read that in the book "Chicken hawk"!
> > > >
> > >
> > >
> >
> >
> > --
> > Twenty years from now, you will be more disappointed by the things
> > you didn't do than by the ones you did do.
> > So, throw off the bowlines. Sail away from the safe harbor. Catch
> > the trade winds in your sails. Explore. Dream. Discover.
> >  -Mark  Twain
> >
> >
> >
> >
> > [Non-text portions of this message have been removed]
> >
>

Dear Sheri:

When I imagine angels, they are much like you.

Paul



--- In fshsociety@yahoogroups.com, "sherioverton" <sherioverton@...>
wrote:
>
> Hi. My son is also severely disabled similar to your husband. He was
> diagnosed at age 5 and using a wheelchair by 10. I imagine that he
has
> more pain than he verbalizes, but it seems to be somewhat managed by
> the Naproxen that he takes once or twice aday. He has had a number
of
> cushions too, but likes the roho best. What he has now isn't the
> standard roho, though. It is called a quatro, I think.....the
cushion
> is divided into four sections so you can adjust the cells' pressures
> differently for optimal comfort. He had really bad pressure sores
> before we got this one. I'm sure that it is somewhat different for a
> mom vs a wife, but I agree that it is really hard to just sit and
> watch someone you love in pain and not be able to do more. I feel
for
> you. The only way I've learned to deal with my own "mother pain" is
to
> try to focus on doing things that are fun and normal. Of course I
> can't just forget about the worries, but I know that his life is
more
> joyful when I try to forget his problems and we do something that
both
> takes his mind off the pain/problems and gives him time to laugh
etc.
>   Well, I can't really explain that well, but bet you know what I
> mean.  I'll keep you in my thoughts. Sheri
>

Let's chat Sunday


Our regular times on Sundays are 2 PM and 9 PM Eastern Time in the USA.

Here is how to get to the chat room:

1. Go to -- http://client0.sigmachat.com/sc.pl?id=157560

2. Click on LARGE Java Icon.

3. Enter a "UserName".

4. Click on "log in" and you will be there.

Paul, in rapidly warming Florida

Good news, Chris.  We were all worried that your eye problem was
someithing really bad.  I certainly hope your glasses make you more
comfortable.

Paul



--- In fshsociety@yahoogroups.com, "christa" <uccricketts@...> wrote:
>
>  Hi people, ok update on my eyes here. Today I saw a second
> specialist whom says for now (she would like to keep "eye" on me ) I
> have Hyperopia.
>  My right eye is very very farsighted. She felt that full time
> glasses should help with the odd feeling I have in that eye "NUM".
If
> it doesn`t help them she sure will dig deeper. My retina looked
good.
> I have some center vision loss but I can pretty much see well with
> glasses. So 420.00 later we`ll see.Oh and 359.00 for the new patient
> visit..Now is when I thank god we have some insurance.
>  Another note today I got a copy of my DNA test for FSHD.I don`t
> understand all the numbers but!!  I felt that if it took so long for
> my Neurologist to get a copy I will just carrie it with me for my
> visits. Matter fact I will get a copy of all my doctor visits and
> keep a file to take along. It may save some red tape and lots of
> time...
>  Thanks for everyone who wished me well. I still wonder if it has
> anything to do with FSHD beings all this kinda hit me hard at the
> same time.
>
>  Jan I wsih you and J the best I hope some links you find here or
> with in your MDA folks in your area you can help your husband become
> more comffy. My father has this too and is 67 he is in daily pain
and
> says it hurts when you sit or walk to lay...but he goes on with
> little releif.
>  This site has helped me find some good doctors here in the
> states "Indiana"  take care all my best chris
>

Thank you Linda, you said my words and in much better English.  We have at
least two teenagers here on this board who are very active in looking for
some supplemental help (of course, it is not a cure but we almost never have
cure with
prescribed medications also) at least for general health - my daughter Anna
and Frogspor - and I really do not want them to lose their hope for what
they are taking.

This disease is really terrible, and you often feel that your condition and
appearance
couldn't be worse and it always could. If you suffer from bending forward
when walking
and not being able to straighten your body, remember that you are lucky
because you can
use cane or walker. My daughter has so severe lordosis that she almost
falling BACKward
and can not use any supportive devices. Seating also is a big problem.

BTW, Linda, how you help yourself walking with lordosis? Anna actually does
not walk,
she can transfer her deformed body with tremendous effort for several feet.
When
I try to imagine where her center of gravity is I fail.

Alla



On 3/1/07, mytishtash <mysteryguest101@... > wrote:
>
>   all right,,,,thats it...
> im through with reading all of the "rubbish", "false claims", and
> lastly,
> Mimi's claim that those of us that use supplements/nutritionals are
> in a "stage of DENIAL".
>
> how dare you!
>
> not only does that statement just plain insult me -- it damages my
> INTEGRITY.
> how?
> because you are saying that what im doing is "folly" and basically,
> IMHO, points the finger at me that i really dont have a clue as to
> what im doing. thanks a lot....
>
> ive tried for a long time to get people to understand that taking in
> vits/supps is a very good thing and its not a cure.
> i know for a FACT that the vits/supps i take DO HELP ME.
>
> i am not in a stage of denial.
>
> to profess that "our" urine, my urine, could be an expensive waste
> of what my body doesnt absorb, is just bunk.
>
> our bodies will always get rid of excess, no matter what we injest.
> to point the bad finger at vits/supps is absurd.
>
> if that were the case, then please, stop eating all the fruits and
> veggies and red meat. after all, they all contain whats in the
> vits/supps, just at a different level dose. and im sure that when u
> pee it out, it could be measured that there was excess. does that
> mean that your grocery bill and dining out bills point to bloated
> excess and you should stop eating?
> its "folly" to eat the fruits, veggies and meats. just as absurd.
>
> i, for one, have NEVER said that the vits/supps are a cure. ive
> offered that its a viable treatment for those whose bodies NEED the
> vits/supps. some of you out there, due to a great diet, dont need
> the supps and vits.
> others- just need a little. i need a lot!
> since most food is toxic to my system, i NEED them!
>
> i am replacing what my own system doesnt create on its own and/or
> get in my diet.
>
> im sure that the article was a bit skewed in its wording about
> certain claims.
> however -- the fact remains that most of the vits/supps mentioned
> are the same ones that myself, wayne, steve, and others that havent
> been here for a while, all take and do get some relief/results.
>
> im sick and tired of the wholly negative opinion about vits/supps on
> this board. at least im putting good stuff into my body - readying
> it for the day that IF and WHEN a treatment or cure is out there- my
> body will be healthy enough to accept it.
>
> can the rest of u say that your bodies are healthy enough to accept
> a treatment/cure? i wonder...
>
> ive been treating myself for nearly 4 yrs now and the times that ive
> fasted or just plain decided that i no longer needed the vits/supps
> had drastic, irreversable damage.
> i still havent recovered the losses.
>
> to add to the benefits of the vits/supps is light, moderate exercise
> of some sort. the whole package just makes one feel better.
>
> unfortunately, i can no longer exercise as my lordosis has become so
> severe, im in fear of paralysis. but, i do know the benefit of
> exercise and i encourage anyone out there to find a good program.
>
> the bottom line is this
> everyone's fsh body is different.
> BUT - the common thread is that, atleast for fsh, our bodies dont
> produce the needed "things" that normal bodies produce. i agree
> with the article that because of that particular malnutrition, it
> exaserbates the fsh md to a larger degree.
>
> the object lesson is to put something in to help replace what isnt
> there. the vits/supps are it for now, until something better is
> offered.
>
> stem cell research, et al.? -- maybe... but, remember this.
> if your body isnt healthy it will be harder for it to accept a
> possible treatment/cure.
>
> i know im healthy- i havent had a "cold" "flu" in yrs.
>
> just my thoughts.
>
> linda
>
> .
> >
> > To do otherwise is nothing but a form of Escapism. Perhaps for
> those
> > who entertain hopes of cures for dystrophic diseases such as FSHD
> > through supplements/nutritionals – these folk are in a stage of
> > DENIAL.
> >
> > /Mimi
> >
> >
>
>
>


[Non-text portions of this message have been removed]

Welcome, Jan.  Good to have you with us.  Please come back often.

My heart goes out to you and J.  It sounds to me like you need the
help of a professional of some kind.  Perhaps you can find a good PT
or OT to help you with your comfort problems.

I did a little poking around in http://mda.org and came up with these
two articles in the Quest magazine section.  I am sure you could find
some more there and in other web sites.  Don't give up on your search
for help.

http://mda.org/publications/Quest/q113wheelturns.html

http://mda.org/publications/Quest/q104wheelchair.html

Paul, the much less effected in Florida, USA



--- In fshsociety@yahoogroups.com, "Jan" <janlucas@...> wrote:
>
> Hi everyone,
>
> This is the first time I've joined a group like this so let me tell
> you a bit about US.  Us being me and my husband (who is the one with
> FSHMD). We live in Australia in a small rural community.  J was
> diagnosed with MD at around 10 yrs, was in a wheelchair by his mid
> thirties and at 54 is severely disabled.  All arm function is
basic -
> both shoulders are permanently dislocated, hands cannot make fist,
> although he still has gross motor skills.  The muscles in the legs
and
> buttocks have wasted significantly over the last six months so that
he
> now feels as if he is just sitting on the bones.
>
> We've been together for thirteen wonderful years.  Mostly I have
> managed to cope with the dystrophy over time, but lately it is
really
> a struggle.  I know J is in pain so much of the time and I know
there
> is nothing I can do about it.  He aches to sit and aches when he
lies
> down. When we visited a specialist about 10 years ago he told us
that
> J had the most severe form of FSH that he had seen so it makes it
hard
> to know what to expect.  I guess all I'm asking for is a bit of
> information.  Does anyone out there recognise this level of
severity?
>  Have you come across any great cushions that make sitting easier
> (we've tried ROHO, gel, various foams, sheepskins ...) or tricks to
> help hold the arms up?  Any help, support gratefully received.
>
> Jan
>

Hi Jan,

I'm sorry to hear about your husband, but I do know what you are
talking about. My daughter is 10, and is in a wheel chair most of the
time now. Her body is mostly bones, as the muscles are all atrophied
every where else (she actually has muscle in her forearms and
calves). She has a cushion that is ok for her at the time, but that
will change as she grows more, and gets a little more heavy. So, at
this time, I really can't help with that part of it.

As far as the arms, does your husband have a "desk top" to put on his
wheel chair to rest his elbows on? My daughter puts her elbows on the
table, counters, desk tops, whatever is available to support her arms
to do most everything. She can not brush her hair unless she has it
in the front and just brushes the very ends (about 4 inches worth).
That is about the only info I have for now.

take care,
Angela



--- In fshsociety@yahoogroups.com, "Jan" <janlucas@...> wrote:
>
> Hi everyone,
>
> This is the first time I've joined a group like this so let me tell
> you a bit about US.  Us being me and my husband (who is the one with
> FSHMD). We live in Australia in a small rural community.  J was
> diagnosed with MD at around 10 yrs, was in a wheelchair by his mid
> thirties and at 54 is severely disabled.  All arm function is
basic -
> both shoulders are permanently dislocated, hands cannot make fist,
> although he still has gross motor skills.  The muscles in the legs
and
> buttocks have wasted significantly over the last six months so that
he
> now feels as if he is just sitting on the bones.
>
> We've been together for thirteen wonderful years.  Mostly I have
> managed to cope with the dystrophy over time, but lately it is
really
> a struggle.  I know J is in pain so much of the time and I know
there
> is nothing I can do about it.  He aches to sit and aches when he
lies
> down. When we visited a specialist about 10 years ago he told us
that
> J had the most severe form of FSH that he had seen so it makes it
hard
> to know what to expect.  I guess all I'm asking for is a bit of
> information.  Does anyone out there recognise this level of
severity?
>  Have you come across any great cushions that make sitting easier
> (we've tried ROHO, gel, various foams, sheepskins ...) or tricks to
> help hold the arms up?  Any help, support gratefully received.
>
> Jan
>

No, Steve, you did not start a war, you made me feel more peaceful. This
site was mentioned by Wayne last year and I put it in my favorites just to
go back and read some reference papers. Very interesting! You are absolutely
right with lecithin. It contains phosphatidyl choline which is a key
building block of all cell membranes and very good for liver support. Try
coQ10 and selenium also.

  When my daughter was diagnosed in 1996 (she was 8 year old) I was shocked
and tried to reach people with FSH. I was given a lot of advices and most of
all nutritional and who can answer why the spontaneous mutation occur? Why
if you measure your Zn, CoQ10 and magnesium they are low in spite that you
supplementing with them, this means you can not absorb properly, so check
your enzyme status and so on. Tremendous every day work of reading and
comparing and thinking and very far from denial.

We need to share our experience even if  we can not make conclusions. I
think this is unique
material. Even doctors working in MDA clinics see too few FSH patients and I
am sure their
statistics is not correct.

Alla


On 3/2/07, s_zawrotny <no_reply@yahoogroups.com > wrote:
>
>   Thanks brother for sharing your history and the information. I did a
> lot of throwing my arms up to reach things on the ship. Sustained a
> few minor injuries. Thanks for your service in the military.
>
> I'm reading the reactions to my other post of that vitamin website.
> Man, I didn't mean to start a war. I think I will "duck and cover"
> for a while and waite for the dust to settle!
>
> I gotta be honest, sometimes I just hate this disease with such a
> passion...
>
> --- In fshsociety@yahoogroups.com <fshsociety%40yahoogroups.com>,
> "phillips1223" <pbhardy@...> wrote:
> >
> > s_z, I served in the Marine Corps from January of 1975 until my
> > medical retirement (because of being diagnosed with muscular
> > dystrophy) in September of 1990. I was a CH-53D pilot. I was also
> > an instructor pilot in the Pensacola, Florida area (where I now
> > live), flying the TH-57. I was a West Coast Marine, and did my
> > overseas time on Okinawa (3 deployments). I managed to mostly stay
> > off ships during my career.
> >
> > Looking back, I likley had muscular dystrophy early on, if not
> > before I entered the military. I had mild symptoms, even back
> > then. But, like everyone else, I compensated well. At one time, I
> > could score very highly on the physical fitness test (PFT), but my
> > score kept on dropping over the years. By the mid-1980s, I was
> > having difficulty even obtaining a minimum passing PFT score. I was
> > in my early 30s by then, and I attributed this to aging and not
> > working out enough. It was the muscular dystrophy that was causing
> > this, however. In 1986, I failed a PFT, and started limping
> badly.
> > I went through every medical test you could think of at the Naval
> > Hospitals in Long Beach abnd San Diego; they couldn't figure it
> > out. But, I was given waivers to keep serving. By 1989, I
> couldn't
> > hide the fact that something was there, and I went to Bethesda,
> > where they found the MD. That was in January of 1990, and I was
> > retired by September.
> >
> > I wasn't that disabled overall in 1990; however, I started using a
> > Jazzy powerchair full time in early 2006. I am hanging in there as
> > best I can. I started working in environmental consulting in 1992,
> > and have been with my current employer for over 14 years.
> >
> > You know, the symptoms didn't make it harder to fly the helicopter,
> > but the range of motion impairments made it hard to reach some of
> > the overhead switches in the cockpit. I always attributed this
> > to "just being stiff" and asked the other pilot to flip the
> switches
> > I could not reach. The throttles in the CH-53 were overhead, too,
> > and I used to throw my arm up to grab them, in order to reach
> them.
> >
> > --- In fshsociety@yahoogroups.com <fshsociety%40yahoogroups.com>,
> s_zawrotny <no_reply@> wrote:
> > >
> > > Phil,
> > > What years did you serve and where? I was in during the Ronald
> > Reagan
> > > years and experienced the transition from people hating military
> > men
> > > and calling us baby killers to being respected by people.
> > >
> > > Did you have symptoms of FSHD while a helo pilot? I know some of
> > those
> > > helocopters require both hands and both feet working
> > simultaneously.
> > I
> > > read that in the book "Chicken hawk"!
> > >
> >
>
>
>


[Non-text portions of this message have been removed]

--- Hi Phil and Robert

My father served in the Navy untill 1978 when he retired. He too
belived he had this earlyer but no one could seem to find it. He
finally was diagnosed in 1990 through muscual bi-opsie from shoulder
and leg.
  He was able to get out of the service before they made him leave for
medical reason but retired due to personal hardship which was not
easy either. The Navy was his life .
  At 67 he still walks but is starting to have hip poping problems.
Falling twice. Lots of pain. He says if it wasn`t for the military he
would not beable to with stand the pain.
  But he is greatfull for what life he has and for as long as he has
it. Untill he can no more he now travels with his love in their class-
c rv to the warm states for now. The cold is too much for him to bare
in Indiana...
  My best to you and I hope that you have a life full of the good
things and love xox all my best...Navy bratt


  In fshsociety@yahoogroups.com, robert kupps <nhiskups@...> wrote:
>
> Hi Phil, just a side note, in 1993 I too got out of a rigorous
> production management job, took two years off to get a degree in
Reuse
> and Recycling Management, work in a Business Environment Assistance
> Center, then worked for out local County in their Pollution
Prevention
> (P2) Program until I was laid off three years ago. I then retired.
Nice
> to see there's other environmental persons working out there.
> robert k
>
> phillips1223 wrote:
>
> > s_z, I served in the Marine Corps from January of 1975 until my
> > medical retirement (because of being diagnosed with muscular
> > dystrophy) in September of 1990. I was a CH-53D pilot. I was also
> > an instructor pilot in the Pensacola, Florida area (where I now
> > live), flying the TH-57. I was a West Coast Marine, and did my
> > overseas time on Okinawa (3 deployments). I managed to mostly stay
> > off ships during my career.
> >
> > Looking back, I likley had muscular dystrophy early on, if not
> > before I entered the military. I had mild symptoms, even back
> > then. But, like everyone else, I compensated well. At one time, I
> > could score very highly on the physical fitness test (PFT), but my
> > score kept on dropping over the years. By the mid-1980s, I was
> > having difficulty even obtaining a minimum passing PFT score. I
was
> > in my early 30s by then, and I attributed this to aging and not
> > working out enough. It was the muscular dystrophy that was causing
> > this, however. In 1986, I failed a PFT, and started limping badly.
> > I went through every medical test you could think of at the Naval
> > Hospitals in Long Beach abnd San Diego; they couldn't figure it
> > out. But, I was given waivers to keep serving. By 1989, I couldn't
> > hide the fact that something was there, and I went to Bethesda,
> > where they found the MD. That was in January of 1990, and I was
> > retired by September.
> >
> > I wasn't that disabled overall in 1990; however, I started using a
> > Jazzy powerchair full time in early 2006. I am hanging in there as
> > best I can. I started working in environmental consulting in 1992,
> > and have been with my current employer for over 14 years.
> >
> > You know, the symptoms didn't make it harder to fly the
helicopter,
> > but the range of motion impairments made it hard to reach some of
> > the overhead switches in the cockpit. I always attributed this
> > to "just being stiff" and asked the other pilot to flip the
switches
> > I could not reach. The throttles in the CH-53 were overhead, too,
> > and I used to throw my arm up to grab them, in order to reach
them.
> >
> > --- In fshsociety@yahoogroups.com
> > <mailto:fshsociety%40yahoogroups.com>, s_zawrotny <no_reply@>
wrote:
> > >
> > > Phil,
> > > What years did you serve and where? I was in during the Ronald
> > Reagan
> > > years and experienced the transition from people hating military
> > men
> > > and calling us baby killers to being respected by people.
> > >
> > > Did you have symptoms of FSHD while a helo pilot? I know some of
> > those
> > > helocopters require both hands and both feet working
> > simultaneously.
> > I
> > > read that in the book "Chicken hawk"!
> > >
> >
> >
>
>
> --
> Twenty years from now, you will be more disappointed by the things
> you didn't do than by the ones you did do.
> So, throw off the bowlines. Sail away from the safe harbor. Catch
> the trade winds in your sails. Explore. Dream. Discover.
>  -Mark  Twain
>
>
>
>
> [Non-text portions of this message have been removed]
>

Hi. My son is also severely disabled similar to your husband. He was
diagnosed at age 5 and using a wheelchair by 10. I imagine that he has
more pain than he verbalizes, but it seems to be somewhat managed by
the Naproxen that he takes once or twice aday. He has had a number of
cushions too, but likes the roho best. What he has now isn't the
standard roho, though. It is called a quatro, I think.....the cushion
is divided into four sections so you can adjust the cells' pressures
differently for optimal comfort. He had really bad pressure sores
before we got this one. I'm sure that it is somewhat different for a
mom vs a wife, but I agree that it is really hard to just sit and
watch someone you love in pain and not be able to do more. I feel for
you. The only way I've learned to deal with my own "mother pain" is to
try to focus on doing things that are fun and normal. Of course I
can't just forget about the worries, but I know that his life is more
joyful when I try to forget his problems and we do something that both
takes his mind off the pain/problems and gives him time to laugh etc.
   Well, I can't really explain that well, but bet you know what I
mean.  I'll keep you in my thoughts. Sheri

Hi people, ok update on my eyes here. Today I saw a second
specialist whom says for now (she would like to keep "eye" on me ) I
have Hyperopia.
  My right eye is very very farsighted. She felt that full time
glasses should help with the odd feeling I have in that eye "NUM". If
it doesn`t help them she sure will dig deeper. My retina looked good.
I have some center vision loss but I can pretty much see well with
glasses. So 420.00 later we`ll see.Oh and 359.00 for the new patient
visit..Now is when I thank god we have some insurance.
  Another note today I got a copy of my DNA test for FSHD.I don`t
understand all the numbers but!!  I felt that if it took so long for
my Neurologist to get a copy I will just carrie it with me for my
visits. Matter fact I will get a copy of all my doctor visits and
keep a file to take along. It may save some red tape and lots of
time...
  Thanks for everyone who wished me well. I still wonder if it has
anything to do with FSHD beings all this kinda hit me hard at the
same time.

  Jan I wsih you and J the best I hope some links you find here or
with in your MDA folks in your area you can help your husband become
more comffy. My father has this too and is 67 he is in daily pain and
says it hurts when you sit or walk to lay...but he goes on with
little releif.
  This site has helped me find some good doctors here in the
states "Indiana"  take care all my best chris

Hi Jan, have your tried
http://aquilacorp.com/
for a butt cushion?

robert k

ref: http://www.newmobility.com/review_article.cfm?id=1121&action=browse

>
>
>
> --- In fshsociety@yahoogroups.com
> <mailto:fshsociety%40yahoogroups.com>, "Jan" <janlucas@...> wrote:
> >
> > Hi everyone,
> >
> > This is the first time I've joined a group like this so let me tell
> > you a bit about US. Us being me and my husband (who is the one with
> > FSHMD). We live in Australia in a small rural community. J was
> > diagnosed with MD at around 10 yrs, was in a wheelchair by his mid
> > thirties and at 54 is severely disabled. All arm function is
> basic -
> > both shoulders are permanently dislocated, hands cannot make fist,
> > although he still has gross motor skills. The muscles in the legs
> and
> > buttocks have wasted significantly over the last six months so that
> he
> > now feels as if he is just sitting on the bones.
> >
> > We've been together for thirteen wonderful years. Mostly I have
> > managed to cope with the dystrophy over time, but lately it is
> really
> > a struggle. I know J is in pain so much of the time and I know
> there
> > is nothing I can do about it. He aches to sit and aches when he
> lies
> > down. When we visited a specialist about 10 years ago he told us
> that
> > J had the most severe form of FSH that he had seen so it makes it
> hard
> > to know what to expect. I guess all I'm asking for is a bit of
> > information. Does anyone out there recognise this level of
> severity?
> > Have you come across any great cushions that make sitting easier
> > (we've tried ROHO, gel, various foams, sheepskins ...) or tricks to
> > help hold the arms up? Any help, support gratefully received.
> >
> > Jan
> >
>
>


--
Twenty years from now, you will be more disappointed by the things
you didn't do than by the ones you did do.
So, throw off the bowlines. Sail away from the safe harbor. Catch
the trade winds in your sails. Explore. Dream. Discover.
  -Mark  Twain




[Non-text portions of this message have been removed]

HI BEV HERE:  Boy, I just read a post concerning your comment on supplements,
sorry, if this hurts your feelings.  I guess we must really, check ourselves, in
the things we imply, so that it does not hurt whoever is in the society's
feelings.  Just because someone is trying a different approach we cannot judge
them, just encourage them , because if it helps them mentally, physically, and
spiritually, to get through the day, then we need to stand beside them.  I am
sorry you were given the wrong information at 5 years, but, maybe that's the
only educational guess the doctor had at the time, since I do not know you age. 
Back when I was growing up, research was very limited in MD.  sincerely


----- Original Message ----
From: silvertassel <silvertassel@...>
To: fshsociety@yahoogroups.com
Sent: Thursday, March 1, 2007 1:55:29 PM
Subject: [fshsociety] Re: First post - FSHers rsponses to various posts - - -


You are correct, Beverly. Not everyone on the FSH Society Board knows
how to reply to some posts. Primarily because of the wide variety of
FSHD symptoms. Along with the variety of symptoms, is the degree to
which each one is affected by the FSHD disease.

Some FSHers lead virtually normal lives until BAM! Something is
not "quite right," muscles that used to work, work strangely. Others
are affected with symptoms earlier, such like myself with the strange
facial musculature that was totally "mis-interpreted" by medics in my
early childhood years. I think too, some just can't imagine the
problems this yet virtually unknown (unpublicized, that is) type of
MD causes its affected. Hence, maybe a pique of "interest" among the
Readers, but sans experience, just have nothing to sat. As "they"
cannot relate to whatever subject the post is about.

Hopefully, those FSHers who are lurkers (only, and who rarely post)
learn a thing or two by reading posts that may be very troubling, or
just not comprehensible - except to those few who may share a similar
symptom or two.

Example of my extreme "difficulty" in understanding DENIAL of this
disease (which Paul, our or one of our Moderators calls an "awful"
disease).

My earliest memory of childhood (other than I was NEVER an
unhappy child, BTW): Being treated differently by family, strangers
and a miscellany of authority figures - all because I presented with
atypical (abnormal) facial characteristics. This IS an extremely
puzzling way to progress - thru childhood, adolescence and into
adulthood. Mostly, I put it out of my mind, even as a youngster -

EXCEPT when I was in 7th grade and called a "monster" by a
classmate because of how my face presented. Being ostracized because
of my facial impairments IS a form of bullying, I have had to come to
realize. I had no one to help me; no one to sort out these social
problems my unknown "killer FSHD disease" caused me socially. No one
had a clue in Hades that THIS presentation was one of the nine MD
diseases.

And again in high school when the boy (Michael) on whom I had a
terrific crush on - and we were friends BTW - told me, "You know, I
really like you. But I Wish you were better looking!" I do not
believe Michael meant to be unkind, but those of you who are parents
(and maybe singles) will KNOW immediately how this can "hurt." (I
was never a chubby teenager.)

It will have to be accepted And understand that this is a
Dreadul way for a person to grow up in - meaning to some I looked
like the worst thing, or to others who mutely "accepted" me and never
made a Big Stink about "what on Earth is wrong with your face??" I
masqueraded as a so-called "normal," when I obviously wasn't. Had an
astute, thoughtful, questioning medic tested my muscles at age five,
he would have discovered I was unable to use my arms normally.

But Alas, this doctor was not a questioning professional. In
other words, what this medical professional PERCEIVED was far from
the truth. Again another reminder that each of us, normals and other
than normals (VBG) ARE mostly if not entirely ARE what others
(society) PERCEIVE us to be. In my situation, this medical doctor
saw that my facial characteristics were not typically seen in a
child, but he nevertheless operated by his "perception" telling the
parents I had Bell's palsy (which I never had).;

To get to my point about DENIAL. I will never understand those
FSHers who have written - some at great length - that they "do not
want to know" (if they have this damned FSHD disease), putting off
going in for the dx (diagnosis), the muscle biopsy (if indeed this is
done any more), or more importantly, have the DNA test performed.

I DO agree with FSH parents who have natural born offspring: IF the
child/children Do Not Display symptoms, why have each/all tested. BUT
IF the child does show "differences, " it is the best method to have
the child tested.

I honestly wish the doctor who misdiagnosed me at age five had been
taught in med school to develop a questioning mind. We are seeing
more thoroughly trained medical doctors which I am very happy about.

Had I been accurately diagnosed back at age five, these impossible
family dynamics that have developed over Time, would NOT have
existed. My life would have been set on a totally different course -
of learning and doing things I could physically do and accomplish.
Instead of my solitary type of existence in which I became more and
more pejorative, thinking I was "stupid," or worse.......

I will ALWAYS stress (1) early (and correct) diagnosis and (2) early
intervention.

Not recognizing the true problem only causes a myriad of unsolvable
problems, family situations and discord - and between one's parents
as well.

In this vein I can truly say, the FSHD disease can be one hell of a
disease with which to contend. In my unknown FSHD disease situation,
it has been a living hell to live through.

I AM picking up the pieces now. But without family to understand, to
be there for you, and above all to LISTEN to the fact that one indeed
HAS this diease and how it has affected one's life, and their lives
as well (BTW) - life is virtually impossible.

It is dealing too, with the unknown that causes fear and anxiety.
None of us knows what the future brings.

In this perspective, the FSHD disease IS a deadly disease. I have
always read and heard that the FSHD disease is nothing but a "damned
inconvenience. " We know better now. However, those authority
figures and all others "in command" state that a normal life
expectancy is part of the FSHD disease profile. Of course that
excludes those affected wiht the juvenile form of FSHD. This is
contasted thoughI believe, with others like myself who presented the
FSHD disease as early onset. I did not and do not have infantile
FSHD. Thus I can expect longevity, is what I have always heard,
read, and been taught by the NMDs. The intellect is spared in the
FSHD disease. This is not true in other MD diseases, the researchers
have discovered.

Those who do not receive responses to one's post or posts, keep
posting. Keep relating your experiences, fears, thoughts and so on.
We are all part of a large community. One which surely deserves to
be known in our "society." But that may never happen. Thus, we all
need each other.

Mimi, whose strongest suit is her Perseverance .......

--- In fshsociety@yahoogro ups.com, beverly swezey <swyz2060@.. .>
wrote:
>
> HI BEVERLY HERE: I am a little new to this group, but I love it
sometimes you think no one is out their, but since I am new to the
Internet I did not know how it worked. Not everyone responses to you
posting, so I felt like no one cared. They really did, just did not
know what to say. We had a rare snow event here in the HIGH SIERRA'S
OF CALIFORNIA, USA,
> SO OUR BUSINESS WE RUN, WAS CLOSED TODAY, AND THE SNOW PREVENTED ME
FROM GOING IN FOR MY MRI TEST, 56 MILES AWAY IN MODESTO, I WANTED TO
GO TO THE OPEN END ONE. I WAS TOLD I HAD FSH IN 1989, I'M 61, AND MY
FAMILY IS NOT ON BOARD ALL THE WAY. HUBBY HAS HIS OWN PROBLEMS WITH
OPEN HEART SURGERY IN 2002, SO I TRY NOT TO BOTHER HIM WITH MY
STUFF. well that's the way it goes, 5 kinds of old Arthur,
Fibromyalgia, a type of Arthur, spine that's not straight, hip lower
the the next one, and now they are looking into my left chest my
heart is getting zapped for some reason, they cannot determine as of
yet. Life is like an Easter egg hunt you just do not know what Will
turn up.
> Sincerely, Sorry this is sooooo looooong






________________________________________________________________________________\
____
Expecting? Get great news right away with email Auto-Check.
Try the Yahoo! Mail Beta.
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[Non-text portions of this message have been removed]

below is a link to an interesting short article on regeneration.
david

http://www.world-science.net/othernews/070228_regeneration.htm

Hi Jan,
Although I can't help you, I sure hope someone here can give you the
advice you need, and want. I haven't gotten that serious yet, I do
feel for you.  I think being the caregiver is just as miserable as it
is to be the person with the disease.  Have you been seen by your
local MDA, have they no ideas on how to keep your husband more
comfortable?  Hang in there, sounds like you are a wonderful support
for him, and keep coming here for whatever advice we, as a group, can
give you.
Jeri

   --- In fshsociety@yahoogroups.com, "Jan" <janlucas@...> wrote:
>
> Hi everyone,
>
> This is the first time I've joined a group like this so let me tell
> you a bit about US.  Us being me and my husband (who is the one with
> FSHMD). We live in Australia in a small rural community.  J was
> diagnosed with MD at around 10 yrs, was in a wheelchair by his mid
> thirties and at 54 is severely disabled.  All arm function is
basic -
> both shoulders are permanently dislocated, hands cannot make fist,
> although he still has gross motor skills.  The muscles in the legs
and
> buttocks have wasted significantly over the last six months so that
he
> now feels as if he is just sitting on the bones.
>
> We've been together for thirteen wonderful years.  Mostly I have
> managed to cope with the dystrophy over time, but lately it is
really
> a struggle.  I know J is in pain so much of the time and I know
there
> is nothing I can do about it.  He aches to sit and aches when he
lies
> down. When we visited a specialist about 10 years ago he told us
that
> J had the most severe form of FSH that he had seen so it makes it
hard
> to know what to expect.  I guess all I'm asking for is a bit of
> information.  Does anyone out there recognise this level of
severity?
>  Have you come across any great cushions that make sitting easier
> (we've tried ROHO, gel, various foams, sheepskins ...) or tricks to
> help hold the arms up?  Any help, support gratefully received.
>
> Jan
>

Hi Phil, just a side note, in 1993 I too got out of a rigorous
production management job, took two years off to get a degree in Reuse
and Recycling Management, work in a Business Environment Assistance
Center, then worked for out local County in their Pollution Prevention
(P2) Program until I was laid off three years ago. I then retired. Nice
to see there's other environmental persons working out there.
robert k

phillips1223 wrote:

> s_z, I served in the Marine Corps from January of 1975 until my
> medical retirement (because of being diagnosed with muscular
> dystrophy) in September of 1990. I was a CH-53D pilot. I was also
> an instructor pilot in the Pensacola, Florida area (where I now
> live), flying the TH-57. I was a West Coast Marine, and did my
> overseas time on Okinawa (3 deployments). I managed to mostly stay
> off ships during my career.
>
> Looking back, I likley had muscular dystrophy early on, if not
> before I entered the military. I had mild symptoms, even back
> then. But, like everyone else, I compensated well. At one time, I
> could score very highly on the physical fitness test (PFT), but my
> score kept on dropping over the years. By the mid-1980s, I was
> having difficulty even obtaining a minimum passing PFT score. I was
> in my early 30s by then, and I attributed this to aging and not
> working out enough. It was the muscular dystrophy that was causing
> this, however. In 1986, I failed a PFT, and started limping badly.
> I went through every medical test you could think of at the Naval
> Hospitals in Long Beach abnd San Diego; they couldn't figure it
> out. But, I was given waivers to keep serving. By 1989, I couldn't
> hide the fact that something was there, and I went to Bethesda,
> where they found the MD. That was in January of 1990, and I was
> retired by September.
>
> I wasn't that disabled overall in 1990; however, I started using a
> Jazzy powerchair full time in early 2006. I am hanging in there as
> best I can. I started working in environmental consulting in 1992,
> and have been with my current employer for over 14 years.
>
> You know, the symptoms didn't make it harder to fly the helicopter,
> but the range of motion impairments made it hard to reach some of
> the overhead switches in the cockpit. I always attributed this
> to "just being stiff" and asked the other pilot to flip the switches
> I could not reach. The throttles in the CH-53 were overhead, too,
> and I used to throw my arm up to grab them, in order to reach them.
>
> --- In fshsociety@yahoogroups.com
> <mailto:fshsociety%40yahoogroups.com>, s_zawrotny <no_reply@...> wrote:
> >
> > Phil,
> > What years did you serve and where? I was in during the Ronald
> Reagan
> > years and experienced the transition from people hating military
> men
> > and calling us baby killers to being respected by people.
> >
> > Did you have symptoms of FSHD while a helo pilot? I know some of
> those
> > helocopters require both hands and both feet working
> simultaneously.
> I
> > read that in the book "Chicken hawk"!
> >
>
>


--
Twenty years from now, you will be more disappointed by the things
you didn't do than by the ones you did do.
So, throw off the bowlines. Sail away from the safe harbor. Catch
the trade winds in your sails. Explore. Dream. Discover.
  -Mark  Twain




[Non-text portions of this message have been removed]

Thanks brother for sharing your history and the information. I did a
lot of throwing my arms up to reach things on the ship. Sustained a
few minor injuries. Thanks for your service in the military.

I'm reading the reactions to my other post of that vitamin website.
Man, I didn't mean to start a war. I think I will "duck and cover"
for a while and waite for the dust to settle!

I gotta be honest, sometimes I just hate this disease with such a
passion...

--- In fshsociety@yahoogroups.com, "phillips1223" <pbhardy@...> wrote:
>
> s_z, I served in the Marine Corps from January of 1975 until my
> medical retirement (because of being diagnosed with muscular
> dystrophy) in September of 1990.  I was a CH-53D pilot.  I was also
> an instructor pilot in the Pensacola, Florida area (where I now
> live), flying the TH-57.  I was a West Coast Marine, and did my
> overseas time on Okinawa (3 deployments).  I managed to mostly stay
> off ships during my career.
>
> Looking back, I likley had muscular dystrophy early on, if not
> before I entered the military.  I had mild symptoms, even back
> then.  But, like everyone else, I compensated well.  At one time, I
> could score very highly on the physical fitness test (PFT), but my
> score kept on dropping over the years.  By the mid-1980s, I was
> having difficulty even obtaining a minimum passing PFT score. I was
> in my early 30s by then, and I attributed this to aging and not
> working out enough.  It was the muscular dystrophy that was causing
> this, however.  In 1986, I failed a PFT, and started limping
badly.
> I went through every medical test you could think of at the Naval
> Hospitals in Long Beach abnd San Diego; they couldn't figure it
> out.  But, I was given waivers to keep serving.  By 1989, I
couldn't
> hide the fact that something was there, and I went to Bethesda,
> where they found the MD.  That was in January of 1990, and I was
> retired by September.
>
> I wasn't that disabled overall in 1990; however, I started using a
> Jazzy powerchair full time in early 2006.  I am hanging in there as
> best I can.  I started working in environmental consulting in 1992,
> and have been with my current employer for over 14 years.
>
> You know, the symptoms didn't make it harder to fly the helicopter,
> but the range of motion impairments made it hard to reach some of
> the overhead switches in the cockpit.  I always attributed this
> to "just being stiff" and asked the other pilot to flip the
switches
> I could not reach.  The throttles in the CH-53 were overhead, too,
> and I used to throw my arm up to grab them, in order to reach
them.
>
> --- In fshsociety@yahoogroups.com, s_zawrotny <no_reply@> wrote:
> >
> > Phil,
> > What years did you serve and where? I was in during the Ronald
> Reagan
> > years and experienced the transition from people hating military
> men
> > and calling us baby killers to being respected by people.
> >
> > Did you have symptoms of FSHD while a helo pilot? I know some of
> those
> > helocopters require both hands and both feet working
> simultaneously.
> I
> > read that in the book "Chicken hawk"!
> >
>

Thanks for the posts in response to this website posted. I think some
of the claims are overstated and even false in it, however I saw some
good information on research in there. There is a saying: "Take what
you want and leave the rest". I think that is what I read in your
posts. We have to be discerning and grounded.

I ordered a bunch of mega soy lethicin by mistake last year. It came
in the mail and I never got around to returning it. A friend suggested
I start taking it. It is helping with me feeling much more clear
headed and mentally sharp. Not a cure for FSHD maybe, but is helping
combat some of the mental fatigue and lethargy I feel when my body
gets tired.

Steve

--- In fshsociety@yahoogroups.com, s_zawrotny <no_reply@...> wrote:
>
> All,
> Interesting website on supplements that help with MD. I can neither
> confirm nor deny the validity of its assertions, but thought I would
> provide the link for people to check out and read.
>
> http://www.doctoryourself.com/dystrophy.html
>

Hi everyone,

This is the first time I've joined a group like this so let me tell
you a bit about US.  Us being me and my husband (who is the one with
FSHMD). We live in Australia in a small rural community.  J was
diagnosed with MD at around 10 yrs, was in a wheelchair by his mid
thirties and at 54 is severely disabled.  All arm function is basic -
both shoulders are permanently dislocated, hands cannot make fist,
although he still has gross motor skills.  The muscles in the legs and
buttocks have wasted significantly over the last six months so that he
now feels as if he is just sitting on the bones.

We've been together for thirteen wonderful years.  Mostly I have
managed to cope with the dystrophy over time, but lately it is really
a struggle.  I know J is in pain so much of the time and I know there
is nothing I can do about it.  He aches to sit and aches when he lies
down. When we visited a specialist about 10 years ago he told us that
J had the most severe form of FSH that he had seen so it makes it hard
to know what to expect.  I guess all I'm asking for is a bit of
information.  Does anyone out there recognise this level of severity?
  Have you come across any great cushions that make sitting easier
(we've tried ROHO, gel, various foams, sheepskins ...) or tricks to
help hold the arms up?  Any help, support gratefully received.

Jan

I thought of one more reason Mimi could have sited
nutrition as not the "cause" of FSH.  Usually a person
doesn't vary their eating habits drastically thru
their life span.  Yet children can be born to the
parent who are about 50/50 on whether FSH presents
itself in the child.  Now, if nutrition were the cause
of FSH, wouldn't that be more like 100%, or at least
MUCH closer?
   Well, that's MY 2¢ anyway!
Rosemary


--- silvertassel <silvertassel@...> wrote:

>
> Yes, interesting to read of all these many, various
> nutritional and
> supplements' websites.  One however, cannot and must
> not believe
> everything one reads, sees and hears. via the
> internet or other
> places.
>
> Supplements are just that:  supplements to one's
> daily dietary
> regimen.
>
> Merriam Webster English dictionary defines dietary
> supplemt(s) as
> follows:  "A dietary supplement or supplements - a
> product taken
> orally that contains one or more ingredients (as
> vitamins or amino
> acids) that are intended to supplement one's diet
> and are not
> considered food."
>
> Supplements cannot cure a genetic "glitch" or a
> genetic disease such
> as any one of the 9 MD (muscular dystrophy)
> diseases.  Period.
>
> For anyone with such a serious genetic disease such
> as our FSHD
> disease to believe that supplements can "cure" our
> disease, is sheer
> folly.
>
> Some (or all) of us may have less than a desired
> daily
> vitamin/mineral intake.  Some of us have
> hypothyroidism. To combat
> (Not Cure!) this condition, we must take a daily
> dose of the
> appropriate amount of Synthroid.  This however, does
> Not cure our
> hypothyroidism.  Similarly for loss of bone mass -
> drugs have been
> discovered and are utilized for osteoporosis or the
> in-between
> condition "osteopenia", which if uncorrected can and
> usually does
> lead directly to the full blown disease of
> osteoporosis.  And on and
> on with other disease conditions.
>
> Believe you me:  If there WAS and IS a supplement -
> vitamin/mineral "or other" out there, we would have
> heard about this
> curing our muscular dystrophy disease a long, a
> very, very long time
> ago!
>
>      I take unction with this author's statement
> whose 2d paragraph I
> quote here:  "Such despairing, autocratic but
> research-friendly
> pronouncements must not be seen as the last word
> until we adequately
> weigh in maternal and fetal malnutrition AS A
> FUNDAMENTAL CAUSE OF
> MUSCULAR DYSTROPHY. (The caps are mine!) The good
> news (to be
> considered further below) is that if nutrient
> deficiency can cause an
> illness, nutrient therapy may ameliorate, or even
> cure, that
> illness."  etcetera.
>
> The author's basic tenet is scientifically and
> medically incorrect!
>
> The author dangerously states "as a fundamental
> cause of muscular
> dystrophy."  We all should know that not one of the
> 9 MD diseases is
> a nutrient deficiency disease (!!!).
>
> We have a genetic defect.  It is totally unrealistic
> to believe that
> supplements can therefore "cure" our FSHD disease
> (or any of the
> other 8 diseases).
>
> It would be of High Interest for a person who takes
> a high/huge
> amount of nutritionals (supplements of any and all
> kinds( of various
> supplements to have his/her urine tested - it would
> be discovered, I
> am positive, that the urine would demonstrate a very
> high amount
> of "nutrients" that the body was unable to use.
>
> Hence, one's urine would be full of undigested/
> unprocessed
> supplements/nutritionals.  In short, one's urine
> would be considered
> to be "extremely expensive" in money amounts - a
> total waste of one's
> financial resources.  Not to mention good common
> sense!  It is of
> vast importance for those dystrophic patients to
> educate themselves
> about these false hopes.  Many (of us) have very
> little disposable
> income(s) to part with, in the first place(!)
>
> The ONLY cure for any one of the 9 MD diseases will
> be through stem
> cell research and stem cell therapy.  AMEN!
>
> Yes, it is interesting to read about these sorts of
> things, BUT the
> internet can be most dangerous if one does not
> exercise his/her
> common sense and knowledge about what to believe and
> what not to
> believe.
>
> To do otherwise is nothing but a form of Escapism.
> Perhaps for those
> who entertain hopes of cures for dystrophic diseases
> such as FSHD
> through supplements/nutritionals – these folk are in
> a stage of
> DENIAL.
>
> /Mimi
>
> --- In fshsociety@yahoogroups.com, s_zawrotny
> <no_reply@...> wrote:
> >
> > All,
> > Interesting website on supplements that help with
> MD. I can neither
> > confirm nor deny the validity of its assertions,
> but thought I
> would
> > provide the link for people to check out and read.
> >
> > http://www.doctoryourself.com/dystrophy.html
> >
>
>
>




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all right,,,,thats it...
im through with reading all of the "rubbish", "false claims", and
lastly,
Mimi's claim that those of us that  use supplements/nutritionals are
in a "stage of DENIAL".

how dare you!

not only does that statement just plain insult me -- it damages my
INTEGRITY.
how?
because you are saying that what im doing is "folly" and basically,
IMHO, points the finger at me that i really dont have a clue as to
what im doing.   thanks a lot....

ive tried for a long time to get people to understand that taking in
vits/supps is a very good thing and its not a cure.
i know for a FACT that the vits/supps i take DO HELP ME.

i am  not in a stage of denial.

to profess that "our" urine, my urine, could be an expensive waste
of what my body doesnt absorb, is just bunk.

our bodies will always get rid of excess, no matter what we injest.
to point the bad finger at vits/supps is absurd.

if that were the case, then please, stop eating all the fruits and
veggies and red meat.  after all, they all contain whats in the
vits/supps, just at a different level dose.  and im sure that when u
pee it out, it could be measured that there was excess.  does that
mean that your grocery bill and dining out bills point to bloated
excess and you should stop eating?
its "folly" to eat the fruits, veggies and meats.  just as absurd.

i, for one, have NEVER said that the vits/supps are a cure.  ive
offered that its a viable treatment for those whose bodies NEED the
vits/supps.  some of you out there, due to a great diet, dont need
the supps and vits.
others- just need a little.  i need a lot!
since most food is toxic to my system, i NEED them!

i am replacing what my own system doesnt create on its own and/or
get in my diet.

im sure that the article was a bit skewed in its wording about
certain claims.
however -- the fact remains that most of the vits/supps mentioned
are the same ones that myself, wayne, steve, and others that havent
been here for a while, all take and do get some relief/results.

im sick and tired of the wholly negative opinion about vits/supps on
this board.  at least im putting good stuff into my body - readying
it for the day that IF and WHEN a treatment or cure is out there- my
body will be healthy enough to accept it.

can the rest of u say that your bodies are healthy enough to accept
a treatment/cure?  i wonder...

ive been treating myself for nearly 4 yrs now and the times that ive
fasted or just plain decided that i no longer needed the vits/supps
had drastic, irreversable damage.
i still havent recovered the losses.

to add to the benefits of the vits/supps is light, moderate exercise
of some sort.  the whole package just makes one feel better.

unfortunately, i can no longer exercise as my lordosis has become so
severe, im in fear of paralysis.  but, i do know the benefit of
exercise and i encourage anyone out there to find a good program.

the bottom line is this
everyone's fsh body is different.
BUT - the common thread is that, atleast for fsh, our bodies dont
produce the needed "things" that normal bodies produce.  i agree
with the article that because of that particular malnutrition, it
exaserbates the fsh md to a larger degree.

the object lesson is to put something in to help replace what isnt
there.  the vits/supps are it for now, until something better is
offered.

stem cell research, et al.? -- maybe...  but, remember this.
if your body isnt healthy it will be harder for it to accept a
possible treatment/cure.

i know im healthy- i havent had a "cold" "flu" in yrs.

just my thoughts.

linda





.
>
> To do otherwise is nothing but a form of Escapism.  Perhaps for
those
> who entertain hopes of cures for dystrophic diseases such as FSHD
> through supplements/nutritionals – these folk are in a stage of
> DENIAL.
>
> /Mimi
>
>

s_z, I served in the Marine Corps from January of 1975 until my
medical retirement (because of being diagnosed with muscular
dystrophy) in September of 1990.  I was a CH-53D pilot.  I was also
an instructor pilot in the Pensacola, Florida area (where I now
live), flying the TH-57.  I was a West Coast Marine, and did my
overseas time on Okinawa (3 deployments).  I managed to mostly stay
off ships during my career.

Looking back, I likley had muscular dystrophy early on, if not
before I entered the military.  I had mild symptoms, even back
then.  But, like everyone else, I compensated well.  At one time, I
could score very highly on the physical fitness test (PFT), but my
score kept on dropping over the years.  By the mid-1980s, I was
having difficulty even obtaining a minimum passing PFT score. I was
in my early 30s by then, and I attributed this to aging and not
working out enough.  It was the muscular dystrophy that was causing
this, however.  In 1986, I failed a PFT, and started limping badly.
I went through every medical test you could think of at the Naval
Hospitals in Long Beach abnd San Diego; they couldn't figure it
out.  But, I was given waivers to keep serving.  By 1989, I couldn't
hide the fact that something was there, and I went to Bethesda,
where they found the MD.  That was in January of 1990, and I was
retired by September.

I wasn't that disabled overall in 1990; however, I started using a
Jazzy powerchair full time in early 2006.  I am hanging in there as
best I can.  I started working in environmental consulting in 1992,
and have been with my current employer for over 14 years.

You know, the symptoms didn't make it harder to fly the helicopter,
but the range of motion impairments made it hard to reach some of
the overhead switches in the cockpit.  I always attributed this
to "just being stiff" and asked the other pilot to flip the switches
I could not reach.  The throttles in the CH-53 were overhead, too,
and I used to throw my arm up to grab them, in order to reach them.

--- In fshsociety@yahoogroups.com, s_zawrotny <no_reply@...> wrote:
>
> Phil,
> What years did you serve and where? I was in during the Ronald
Reagan
> years and experienced the transition from people hating military
men
> and calling us baby killers to being respected by people.
>
> Did you have symptoms of FSHD while a helo pilot? I know some of
those
> helocopters require both hands and both feet working
simultaneously.
I
> read that in the book "Chicken hawk"!
>

--- In fshsociety@yahoogroups.com, Rogawe <rogawe18@...> wrote:
>
> Paul,
Thank you, Rosemary, for triggering the memory for me of making
Kleenex flowers!  I'm 64, so that was a LOT of years ago.  I remember
my Mom would buy the multiclolor box, and we'd make these beautiful
(we thought) flowers and make bouquet's, or put them on collages, or
wear them.  What a great memory!
Jeri

>    What a great idea for sharing our memories!!!
>    My favorite was my 7th.  My mom had planned a
> party.  It was to be held at the town park, though she
> had an indoor place reserved in case of inclement
> weather.  Well, of course, that day it looked rainy,
> so we ended up meeting everyone at the park, then all
> walking together from there to the alternate site.  It
> was in an old Methodist Camp Ground we lived next to:
> in the dining hall.  (I'm thinking now, I wonder if
> she or someone drove to transport all the "stuff,"
> such as the cake, gifts, and game supplies?)   Anyway,
> I remember she taught us all how to make Kleenex
> flowers, and we perfumed them, which every child took
> home as a souveneer of the party.  I remember we
> played pin the tail on the donkey.  That is about all
> the specifics I recall.  I can't remember one single
> gift I received at that time.  I just remember we all
> had a wonderful time, despite the weather, and I think
> that is why it sticks out in my mind as memorable!!!
>
>    Funny, sometimes, what triggers such memories,
> isn't it?  Thanks for jogging that trigger, Paul!
> Rosemary
>
>
> --- Paul <Paullstann@...> wrote:
>
> > Justin's recent stay in the hospital on his
> > birthday, got me to
> > thinking of my most memorable birthday.
> >
> > It was my 21st, which in those days meant that I had
> > become an adult, a
> > MAN.  I was at Fort Dix, New Jersey, waiting to be
> > shipped (literally)
> > to Germany to face off with the Russians, I guess.
> > It was temporary
> > duty, meaning that whenever the Sargeants needed
> > somebody to do any
> > dirty job, they would step into the barracks and
> > grab some private.  I
> > was not hiding well enough that day so the mess
> > sargeant ordered me to
> > the kitchen where I spent a great many hours (16? -
> > memories do fade)
> > washing not dishes but pots and pans.  It was cold
> > and wet and lonely
> > and did I mention dirty? and just plain miserable.
> > I survived and got
> > a story to tell my grandchildren if I ever get any.
> > :o\
> >
> > Anyone else have a memorable birthday story to tell?
> >
> > Paul, who got some clean hands that day anyhow as
> > rubber gloves had not
> > been invented yet, I guess.
> >
> >
>
>
>
>
>
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>

All,
Interesting website on supplements that help with MD. I can neither
confirm nor deny the validity of its assertions, but thought I would
provide the link for people to check out and read.

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

Phil,
What years did you serve and where? I was in during the Ronald Reagan
years and experienced the transition from people hating military men
and calling us baby killers to being respected by people.

Did you have symptoms of FSHD while a helo pilot? I know some of those
helocopters require both hands and both feet working simultaneously. I
read that in the book "Chicken hawk"!

Paul,
    What a great idea for sharing our memories!!!
    My favorite was my 7th.  My mom had planned a
party.  It was to be held at the town park, though she
had an indoor place reserved in case of inclement
weather.  Well, of course, that day it looked rainy,
so we ended up meeting everyone at the park, then all
walking together from there to the alternate site.  It
was in an old Methodist Camp Ground we lived next to:
in the dining hall.  (I'm thinking now, I wonder if
she or someone drove to transport all the "stuff,"
such as the cake, gifts, and game supplies?)   Anyway,
I remember she taught us all how to make Kleenex
flowers, and we perfumed them, which every child took
home as a souveneer of the party.  I remember we
played pin the tail on the donkey.  That is about all
the specifics I recall.  I can't remember one single
gift I received at that time.  I just remember we all
had a wonderful time, despite the weather, and I think
that is why it sticks out in my mind as memorable!!!

    Funny, sometimes, what triggers such memories,
isn't it?  Thanks for jogging that trigger, Paul!
Rosemary


--- Paul <Paullstann@...> wrote:

> Justin's recent stay in the hospital on his
> birthday, got me to
> thinking of my most memorable birthday.
>
> It was my 21st, which in those days meant that I had
> become an adult, a
> MAN.  I was at Fort Dix, New Jersey, waiting to be
> shipped (literally)
> to Germany to face off with the Russians, I guess.
> It was temporary
> duty, meaning that whenever the Sargeants needed
> somebody to do any
> dirty job, they would step into the barracks and
> grab some private.  I
> was not hiding well enough that day so the mess
> sargeant ordered me to
> the kitchen where I spent a great many hours (16? -
> memories do fade)
> washing not dishes but pots and pans.  It was cold
> and wet and lonely
> and did I mention dirty? and just plain miserable.
> I survived and got
> a story to tell my grandchildren if I ever get any.
> :o\
>
> Anyone else have a memorable birthday story to tell?
>
> Paul, who got some clean hands that day anyhow as
> rubber gloves had not
> been invented yet, I guess.
>
>




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Welcome Reg,

Thank you for sharing a little about yourself with us. Please come
back often to read, or comment. There is always good info going
through the wire here.

Take care
Angela


--- In fshsociety@yahoogroups.com, "va7_bes" <va7bes@...> wrote:
>
>     This being my first post to this group, I would like to tell
you
> a bit about myself.
>     My name is Reg, I am male, mid 40's, and up to five years ago,
> had assumed that my muscular pain & difficulties with strength,
> endurance and atrophy were just something that happens at middle
age.
> My diagnosis came about over some two years and was initiated when
I
> started to manifest symptoms of ALS and was referred to a
neurologist
> for investigation. After several more referrals, muscle biopsies,
> ECG's, EMG's, family history studies and genetic marker screening,
> spanning over two years I was diagnosed with "adult onset" FSHD
with
> leg/ limb girdle involvement. I have been fitted with "Polio type"
> KATO leg & girdle braces that so far, have delayed the inevitable
> wheelchair. I use arm springs to continue using my pc keyboard and
> have been delegated to the main floor in our house as stairs are
such
> a problem for me. (that's actually not a bad this as the girl's
room
> are upstairs at that age they can get rather loud & obnoxious ;-)
>     I live in a city called Vernon, located in the north Okanagan
> valley in British Columbia, Canada. I have been married for over
> twenty years and have two daughters, aged 10 & 15. My family is
> having to make as many adjustments to my disability, if not more
than
> I have endured so far. The battle with the affliction is nothing
when
> compared to dealing with medical plans & red tape getting access to
> medical services, being declared "disabled" in Canada is a long and
> stressful process.
>     I am active in our local MDA chapter although in this part of
the
> world persons with muscular disease that fall under the "MDA
> umbrella" are spread out quite far geographically thus services for
> those afflicted are spread out further! I am hoping that by
> subscribing & participating in the Yahoo groups that pertain to
> anything under that MDA umbrella will aid in bringing us together
to
> learn & share our common knowledge & experience ('s).
>     I look forward to sharing & being part of this group
> ..Reg Bardsley
>

G'day Reg, and welcome.  You are right, we are spread far and wide
geographically.

Ray :-)
Melbourne, Australia.


   ----- Original Message -----
   From: va7_bes
   To: fshsociety@yahoogroups.com
   Sent: Wednesday, February 28, 2007 5:14 PM
   Subject: [fshsociety] First post


   This being my first post to this group, I would like to tell you
   a bit about myself.
   My name is Reg, I am male, mid 40's, and up to five years ago,
   had assumed that my muscular pain & difficulties with strength,
   endurance and atrophy were just something that happens at middle age.
   My diagnosis came about over some two years and was initiated when I
   started to manifest symptoms of ALS and was referred to a neurologist
   for investigation. After several more referrals, muscle biopsies,
   ECG's, EMG's, family history studies and genetic marker screening,
   spanning over two years I was diagnosed with "adult onset" FSHD with
   leg/ limb girdle involvement. I have been fitted with "Polio type"
   KATO leg & girdle braces that so far, have delayed the inevitable
   wheelchair. I use arm springs to continue using my pc keyboard and
   have been delegated to the main floor in our house as stairs are such
   a problem for me. (that's actually not a bad this as the girl's room
   are upstairs at that age they can get rather loud & obnoxious ;-)
   I live in a city called Vernon, located in the north Okanagan
   valley in British Columbia, Canada. I have been married for over
   twenty years and have two daughters, aged 10 & 15. My family is
   having to make as many adjustments to my disability, if not more than
   I have endured so far. The battle with the affliction is nothing when
   compared to dealing with medical plans & red tape getting access to
   medical services, being declared "disabled" in Canada is a long and
   stressful process.
   I am active in our local MDA chapter although in this part of the
   world persons with muscular disease that fall under the "MDA
   umbrella" are spread out quite far geographically thus services for
   those afflicted are spread out further! I am hoping that by
   subscribing & participating in the Yahoo groups that pertain to
   anything under that MDA umbrella will aid in bringing us together to
   learn & share our common knowledge & experience ('s).
   I look forward to sharing & being part of this group
   ..Reg Bardsley





[Non-text portions of this message have been removed]

http://jama.ama-assn.org/cgi/content/abstract/297/8/842