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Hello Kathy ? What are you doing in your college ,you told me you are
sad to have no kids ,I must tell you (don'repeat it) sometimes to have
kids make me very sad too Nicolas is divorced with a little girl and his
brother Frédéric is now sueing for a divorce with two little girls (4
and 7 ) So I am very anxious for my grand daughters and I am looking
after them every times I can .Why that ? They have both a good job ,a
house my daughters in law were good friends for me ,I must tell you they
are not so, now ...
Gail ,be sure I don't try to hide my dystonia ,everybody around me is
knowing what happens to me ,my students and my colleagues .In fact it
was impossible to hide it .I am teaching and I have the responsability
of my departement, so many meetings with my blinking eyes ,or less
blinking after botox ,or a little yellow after surgery.Each times I
explain and they complain or they seem ...but now they Know the word
Dystonia and blepharospam !
Dottie ,you told me Paris is the city of your dreams ,Why ? I don't know
USA ,I would like to go ,I know only Canada .I have an image of your
country through your movies it seems so great ,so varied .
Lori,Jo Ann ,Hugs ,Sue ,Deborah ,Elisabeth ,Anne I try to imagine you
(excuse my english )I am too lazy to look for a dictionnary so I am sure
, sometimes it must be funny .No mind ,blinking eyes ,blinking language
...
Love to all .
Marie.

Kay;
I'd love to get together. I've had a couple of pretty good days this
week, so I'm all excited! I wish it would stay like this forever!!! Maybe
when the Bot B comes out and it works on me, I'll be able to have a lot of
good days!!!! Oh how I'm praying for that. Yes, you name the time and
place, and I will get back to you.
You should see me trying to roll out pie dough! That is so funny! I have
to use my whole body in order to do it. So I'm leaning over my table, and
my whole body is going back and forth trying to roll it out. And because
of my right arm being so weak, the right side of the dough is much thicker
then the left. But hey, it taste just as good so I don't care. My niece
laughs at me, so she is learning how to do that. She's getting pretty good
too! Now to stop her from going around and saying all of my pictures on my
walls are crooked! I lean to the right, so they all lean that way too.
She'll go around and straighten them out, then they look crooked to me!!
She tells me to leave them alone, there fine now. My dog is going nuts, he
wants his walk and I'm late. Just let me know when you want to meet, I'm
so looking forward to meeting you too!
Anne MI

Anne,
Sorry, I have a lot of inside hobbies, but cooking is not one of them. I
enjoy eating though! Have you tried the bread machines? I've heard you can
get quite creative with those. My favorite dessert is trifle. Do you make
that? I wouldn't worry about what something looks like as long as it tastes
good. Maybe you could get one of those mixmasters that do everything, like
neading, etc. Glad to see you still have a sense of humor about it though.
Jo Ann

Hi Anne,
I enjoy the fact that people on this list have such a variety of interests.
I like to bake. I use a Kitchenaid mixer with a dough hook. I would not
be able to knead bread but the mixer does a great job. I sometimes buy
bread from Zingerman's in Ann Arbor. They bake European type bread with
chewy crusts. What is the secret for getting crusts like that?
My voice is finally getting strong enough to carry on a conversation so
if you would still like to get together let me know. We could meet in
Jackson.
I had an appointment with my shoulder doctor today. For the first time
in months I did not need my shoulder injected. I have started on Celebrex,
a brand new anti-inflamatory and it works better than anything else that I
have tried. It was nice to go into the doctor with good news!
I'm looking forward to meeting you in person.
Kay

Hi!
I was just wondering if there are any bakers out there! I use to have a
baking business out of my home, now I try to bake for my family. I see
everyone seems to have wonderful interests for outdoors, but not much
inside the house. I love to sit on my deck and watch the kids playing, or
just to talk to my neighbors. I can't do much else, so I enjoy the rest of
the world.
I use to have a great baking business going, along with my regular job.
And yes, I miss the baking more then my regular job, but I always loved to
make things. It's kind of funny to try to do something and find I can't
invert them because of the Dystonia in my right arm. One day I had
chocolate sauce all over my kitchen, all I could do was laugh! What a
mess, but the dessert came out great even with some missing sauce!
I still have people calling to see if I still bake. It breaks my heart to
tell them no, I can't do it anymore. Sometimes I'll even go to the slice
and bake, or the stir and bake items. It's the cheaters way out, but at
least I can still have the smell of something baking in here. I guess I've
rambled on enough, I just wanted to know if anyone else had a passion for
baking as I do. Have a great evening!
Anne MI

Dear "Elf",
Thanks for answering my call. I really enjoy my work. I think having
dystonia has given me an extra insight into special needs. I have a
tremendous thirst for knowledge about my students' conditions. In fact
sometimes we are taking the same medication, even BOTOX. We have a great
drama teacher who has brought out imaginations and concentrations in our kids
we never believed possible. I highly recommend it for your children. It builds
confidence and self-pride.
thanks for listening, Jo Ann

Hey Ann,
I just have to tell you that I have you beat. I have five sons and one
daughter. Also 12 Grandkids. I'm so glad I had all those boys, so much
easier to raise.
Have a great day. :-)
Prayers to all,
Gail

Hi Marie,
It's so good to hear from you again! I've been thinking about you a lot
lately. I'll be sending up some prayers for you that between your Botox and
your surgery, you will be able to live a normal happy life. You do sound as
if you have come to terms with your condition. Maybe that is the hardest part
of this diagnosis. We just have to say to ourselves "I've got it, and I'll
learn to live with it". I know I have times that are better and some are
worse. Do all you can during the best times and then save your energy during
the down times.
You have learned a lot already...learning how to say no and to ask for help
when you need it are two of the most important things.
Stay home and rest when you need to and by all means enjoy those
Granddaughters! I think that God blesses us with something that not everyone
has. We can all look deep inside and find something special to be grateful
for and to focus on that.
As a teacher, you are in position to educate a lot of people about Dystonia.
Please don't try to hide it from your students. If you are matter-of-fact
about your problem, they will accept you for the wonderful person you are.
They may then be able to go out and help others understand about Dystonia.
Too many people are still out there who haven't been diagnosed yet. They are
suffering with a nameless problem. I don't know about the rest of you, but
once I had a name attached to my problem, it helped me to accept it. I wasn't
just that lady with the shaking head. I could tell people about it and have
them understand.
Here I am going on and on again. I was just so happy to hear from you and to
know that you are doing well. Keep up your good attitude.
Prayers to all,
Gail

Hi Marie Claude,
Hope your surgery proves quite beneficial--
When I saw "Dystonialand" it looked so much like Disneyland that I had
to laugh! Sure hope we did not misread a choice somewhere along the
line-- like the old jokes about when we were getting our brains, we
thought they said trains, and took one... something like that!! What a
group--LOL--
Thanks for the laugh-- Sue

I hope it is a nice day where ever you are.
I had so much email this morning I could not answer each indivdually. It
would take me all day. And I do so want to get to my flower beds, My
husband has found a wild azalia patch and I just have to go and check
that out. I appreciatae every letter I receive, whether it is directed
to me or not. I read them all. Everyone has such intresting things to
say, it is like getting up every morning and reading the next chapter of
the book you put down the night before. Since I love to read, but it is
beginning to get a little hard for me to concerate on the pages written
on paper. Every time I try to read off paper, my good eye, the side of
the dystonia will start to twitch and jerk and if usually just give up.
reading off the computer is easy. I have a 19 inch screen. The same as a
tv. as a matter of fact it is a tv. I have Webtv and it connects
directly to your tv set. This may be an option for those that have
trouble viewing their computer monitor. Just a thought. I posted this
following on the belf bb, but I will say it again. Last night I saw an
ad on tv. Starz, the movie channel you get if you have cable or direct
tv. has a movie coming in April, don't know the time or date of it yet,
but it is called--THE TIC CODE-- staring gregory Hinds and is about
what looked to be a teenage boy with facial tics. Looks to me like it
will be very intresting.
Jo Ann- I hope you are feeling more welcome today. Some days i feel like
I talk and talk and no one has heard a word I have said. No matter, I
continue to talk anyway, eventually some one will hear me and respond,
even if its only,"Oh was you talking to me" I jest of course, i too
have a sense of humor which is sometimes hard for others to understand
except me, but what the heck, It makes me feel good. Kick your shoes
off sit back and join the gang. God bless.
EARLY RISERS, Me too. sometimes I get up before the rooster and have
to remind him to crow and wake every body up. I love early mornings. My
best thinking is done in the morning. Way back when, I had 4 boys, yes
I said 4, at home. As soon as I got my husband off to work and the boys
off to school, I took out my trusty pen and paper and wrote some of my
best poems. That was in the days bdfore computers. And yes my tics are
not as bad in the morning. God Bless
Ann-La.
HAVE A NICE DAY
ANN

to all
I am living in France near Paris and I have a BBP diagnostiqued in
december 98 .I tried botox and last month surgery ,it is too early to
say if it's a success ...I am also a teacher ,I teach culture and
communication in a university and I hope I will be able to keep my job
.I have 2 sons and 3 grand daughters . After the first months of this
desease I feel better ,I must do with it .I can say now " no ,I am tired
,I read less ,I stay at home more but I have found so kind friends in
Dystonialand .
marie

I saw a clip for Dateline--10pm EST, Mar 22,
It looked like some kind of movement disorder, more along the tremor
line, but mentioned a cure or new treatment, I think-- I was paying that
close of attention, but I plan to tape it,
Oh, about the morning being better, I am better in the morning or right
after a nap, like my neck has a reset switch on it only activitable by
sleep.
This seems to be an ST trait and others get better throughout the day,
from what I have picked up in posts and correspondence--so many things
with this condition are exact opposites!
Have a great day y'all!
Sue

Mornin', Anne!
Yes, I am an early bird, too. :) I, too, do better in the morning after a
good night's sleep. If I do have a hard time sleeping, it makes the spasms
worse the next day. My doc said I could take benadryl for nights when I
have trouble sleeping. I have found that the allergy capsule (green and
yellow) works best for me.
I am so sorry you have not had a good result with Botox A. So far, knock
on wood, it has worked for me. I have one good month out of three. I
wish you the best with botox B. It really sounds promising. Has your doc,
by any chance, tried the phenol?
Hugs,
.E :)

Hi Karla,
I loved you story about the horse. I feel our girls have also learned many
life lessons from their horses. I have also gotten so much vicarious
pleasure from watching my daughters work and perform with their horses.
Kay

Hi all;
I'm so glad that I'm not the only early bird around here. I can't do a
whole lot during the day, but in the mornings it's my best time. So I try
to get on the Internet and see what has been going while I was off. But
this morning I received several of your e-mails once I sent some out. Does
anyone else have that problem? Mornings are the best, and the rest of the
day is spent calming the spasms down!?!
Is there anyone out there with ST that is a "primary non responder" to
Botox A? Have any of you been a primary non responder but had the BotB and
had it work? Once it's out my Dr. wants to try that on me, and I'm pretty
excited about it. But any information would be of great help. Thanks to
anyone that can help me on this one. Take care, and have a wonderful day!
Anne MI :)

Hi Jo Ann,
I enjoyed reading your post as I have much in common with you. I'm sorry
you have experienced a lack of response to past posts. I'm a former
special ed. teacher but I had to stop teaching several years ago. I taught
mentally impaired but had children with various disabilities in my
classroom. I really enjoyed my work and it was a great loss to me when I
had to go on disability leave. I have since learned to fill my time with
various hobbies. I sew, quilt, cross stitch and read. What area of
special ed. do you teach? Where do you teach? I also have four house dogs
that keep me company all day--2 brittanys and 2 German Wirehaired Pointers.
A couple years ago I got an obedience title on my male GWP. That was a
real accomplishment as I have physical limitations and Blue is an 80 dog.
He is so loving and gentle. I have 3 children ages 20,18, and 14. I have
spasmotic dysphonia. That is not why I am on disability however. I also
have an arthritis/auto immune disorder called Reiter's Syndrome. I don't
think there is any conection between my SD and RS, I just unlucky I guess.
I actually feel I have much to be grateful for. I have a wonderful family.
I tire easily but feel fairly good on most days. I would enjoy learning
more about you. You can write me directly if you wish.
Kay

Jo Ann, of course we're listening. And in the last part of your email you
told what you liked and what interested you. And, of course, the weather.
Aren't you glad spring is here?! I just love this season. How are you
involved in the theathre group?
You are lucky to be still working. I am on Social Security Disability after
working for as long as I could. Teaching Special Ed must be a rewarding and
tough job.
See...I'm listening!! :-)
Love & Hugs, Bonnie in TX

I am glad you've joined the list ;)) Come on out to the "dance floor" and
jump right in with topics that you'd like to "chat" about ....
I think it's terrific that your teaching , especially spec. ed since both the
boys are in ERC (grade 2 and Kindergarten) due to the physical challenges
coupled with the degenerative aspects of "whatever" this is, well it just
makes for interesting teaching techniques. We have been so fortunate that the
school system here is usually very helpfull and not too perplexed at us too
often <wee smirk
because of "mom and dad" ... we've a huge team of folks here (on and offline)
that have been heaven sent to help.
I look forward to hearing from "everyone" but I understand that life does
exist outside the "box" ... keep us updated as ya can ... hugs from all the
"elves" here in TN...Elf... Romona
mom to Tori (age 10, nda), Zach (age 9, multichallenged), Cory (age 6,
multichallenged) and wife to Tony (my hero)
http://members.aol.com/elf808

Dottie, here's to hoping you get the "want to" to quit smoking and soon. We
will help you with the willpower and strength. But, as you know, you have
to have the "want to" to quit.
Now, me...a love my beer! :-)
Love & Hugs, Bonnie in TX

To all,
You all sound like very nice people, but to be honest with you, I don't get
much response when I write. Is it something I have said. Maybe I'm just
insecure. I don't have any horses so I don't have that in common. I do have
two welch corgi dogs which I dearly love and could talk endlessly about. My
dystonia is managable so I don't want anyone to feel sorry for me. I live in
the sunny south so I can't complain about the weather. It's absolutely
gorgeous here now and today I worked with my plants which I enjoy doing. I'm
also involved with the theatre group at my school. I teach special education.
If anyone has anything in common and would like to write, I would love to hear
from any of you. Sometimes I feel like a wallflower on this list when noone
talks to me. I have a great sense of humor so give me a try!
Jo Ann

Ann, sounds like you have alot going on in your life. Glad that you are
feeling better.
Still having beautiful spring weather here.
Take care.
Bonnie in TX

Dear Bonnie,
Your description of your horses running and kicking their heals, brought
back a beautiful childhood memory. I had a horse when I was about 14, he
was a beautiful roan with a light main and tail. He was about two when I
bought him, had never been ridden, had just grown up wild running in a
field. I had been looking for a horse, there was an add in the paper that
he was for sale. When my Dad drove me to the owner's home, I saw this
beautiful, giant horse standing on top of a hill, looking so proud, and
reminded me of the part in Bambi when the father deer stood atop a hill.
When the owner was finally able to catch him and brought him down to us, I
was just amazed at the beauty and powerful muscles, and in awe at his size.
We bought him for $100 took him home, and I soon learned he was indeed,
wild. I didn't have money for a saddly, just had a bridle, I put the
bridle on him (not without a struggle) I had to stack cinder block in order
to get on him. His shoulders came to mine, anyway he stood still, and I
jumbed on his back, he immediately threw me off. We went back to the
blocks, I got on, and he immediately threw me off. This went on all day.
The day turned into days, the days into about two weeks, he just constantly
kept throwing me, He'd allow me to walk him, groom him, everything but
ride him. Needless to say, I was so frustrated, but I was as determined as
he, I was going to ride him, and he wasn't going to allow it. After so
many bruises and blood, he threw me, I just lay in the field on my stomach,
unable to stand it any more, and cried. After a few minutes, I felt
something tough my back, then nudge my back, I knew it was him, but didn't
dare screw up the moment, he kept nudging me, I finally turned over on my
back, and looked at him standing over me. He actually licked the tears
from my face. We had about a five minute stare down, I didn't know what to
do, so I slowly got up, took him back to the bricks, all the time wondering
what was going on, I got on his back and he DIDN'T throw me, it was a rough
ride, but he didn't rear and kick and throw me. I learned a very valuable
lesson that day, he wasn't going to be broken, but he would allow me to
ride him. It was like he just wanted me to know that if I wanted to ride
him, he would allow it, I didn't break him, he broke me, but then we became
best buddies. When the school bus would bring me home, he knew what time
that would be, and he'd begin running and kicking, it was beautiful. When
I'd go to him, he'd lick my face (kisses) and it was a wonderful
relationship between an animal and human. I was the only person he would
"allow: ride him. He was very clear on that point. Didn't mean to write
so long, but the memory made me cry, (happy tears) thinking of him, and how
no one should give up on anything, b/c you never know what will happen.
But he taught me a lesson, he broke me, but I was his best friend after
that.
Take care, - Thanks for the memory - Karla

Bonnie, thanks, I haven't had any pains since early this moring. That
was before I put my patch on. That usually does it. I am supose to wear
it from 7in morning to 10 at night and it releases 0.4mg of
nitroglycerin an hour. I was on Isodil (sp) it did about the same thing
but my stomache couldn't tolerate it. I also have the nitroglycerin
tablets to put under my tounge if I need to. Very rarely do I have to
use those. Yes I love my yard and I tend to overdo sometimes. I gave it
a rest today. Just sat in my swing and enjoyed my handy work. Well
actually I didn't do it all by myself. My daughter in law helped me.
Today she dyed my hair. and next week she is giving me a pernament. Plus
I had company a good bit of the day. Plus my husband and son are adding
a room onto the house and they needed a supervisor. Love and God bless.
Ann-La.
HAVE A NICE DAY
ANN

Ann, hope those chest pains are just from overdoing it. I know we all
suffer from different levels, I try to do as much as possible but there are
days when I just have to rest all day. I feel fortunate that I am able to
walk and ride my horses at this time. I am looking forward to working in my
flower beds which I have to stop and rest alot. :-) But, I get them done.
Take care, Bonnie

In a message dated 99-03-20 12:52:24 EST, you write:
Yep I saw that movie .... wish it were 'true" ... though to be honest I don't
think I'd want to be the "healer" myself ...... Elf

It is a beautiful day here today. I feel good and the horses just put on a
wonderful "show" running from front to back; kicking up their heels. To me
that is always a beautiful, relaxing sight to watch them run at liberty.
Hope everyone is doing well.
Bonnie

Hello ,Did anyone here see the movie...Ressurection...last Monday on
TV....it was about a woman that survived an accident and then aquired
the power of healing touch.Anyway one of the people she healed had
Dystonia Muscular Deformens.First time I heard Dystonia mentioned on
television.I wish it was a true story....

Hi Ann,
I live in Ohio and it was so nice here yesterday and today. I immediately
thought about planting flowers and a garden I usually plant. I was so
excited - then remembered this darned ST and how I tried to do it last year
and couldn't. Maybe I can find some one to help me this year. (I honestly
didn't mean for this to be a downer, just kind of turned in so one, sorry)
This time of year is just so exciting, with everything coming alive again,
it's great.
Take care - enjoy playing in the dirt. That's what I always call it..LOL -
Karla

Karla, Thank you. I am fortunate that I do not suffer the pain that a
lot of you do. My physical limitations are limited to as much as I can
do or feel like doing because of the heart problem I have. When I feel I
am getting to tired I rest. I just have to be a little more cautiouse
for awhile because I may now have a blockage in the carotid artery.
Tests pending. My dystonia is limited to my face now. The biggest
problem I have with it is that when it is at its worst my face gets so
tired and the aggravation it causes because who can concerate with the
constant movement going on. My wish for you is a pain free hour, week,
month, and years. Our day will come.
fortunate for me the Kolonapin slows the spasms to tolerable most of the
time.
Today I don't know about the yard. I am having afew light chest pains
today. Guess I over did it yesterday.
as to your note turning into a woe is me. Who can be up and cherry all
the time especially if they suffer from our shared disease. Say what you
feel. That is what we are all here for, to support each other, through
the good and the bad. If anytime you feel like talking 1 on 1 you can
always give me an email. Hope day is better today.
Love to you and God Bless
HAVE A NICE DAY
ANN

Steve. so glad your father is doing well. I'll keep the good vibes and
prayers going your way.
Bonnie

To All,
My father went for his 1st checkup today and the DR said he is doing
great!He is allowed to go up and down the stairs and even take my mother out
for dinner!!He still has an aide and P.T..His next checkup is in one month!!
I and my whole family can not begin to thank you all for your
prayers,good thoughts,and vibs..It meant so much to all of us!This group is
like one big family!!So keep them coming and I'm sure my parents will be
dancing at their 50th!
I am going to keep this service for a while until I get used to the web
tv.I got the web tv so I can use the web both in bed and when I am up in my
wheelchair(computer across the room from my bed).My e-mail on the webtv is
steves524@.... You people are great!!!
Steve
Stephen D.Schiavo,Jr
steve524@...

Hi Dottie,
Welcome to our growing group of Dystonia folks. I am a fellow STer, receiving
Neurobloc about every 12 weeks now. Each time I hope to go a little longer,
but then I give in and keep the appointment.
I seem to have a much milder case than so many of the others. I only take 5
mg. of Valium a day, although my Internist says that my blood pressure med
also helps the tremor. My main problem, outside of pain, is difficulty
turning my head to the left. Consequently, my left arm is usually bruised
from not quite making it through doorways. :-)
Anyway, we're happy that you have joined us and we look forward to hearing
from you in the future. Please don't be afraid to speak up, most of the rest
of us do.
Prayers to all,
Gail

To All,
Thank you all for your good thoughts,prayers and good vibes you had for
my Dad, Mom,and rest of my family!!! It will be of great help to him to
make a speedy recovery!!
This group is great,just like a family.Dad will go to the dr.friday for
his first checkup.
thank you all once again and please keeping thinking of him.thanks.
Steve
steves524@... Stephen
D.Schiavo,Jr

Just wanted to wish all a happpy st/ Patricks day.
HAVE A NICE DAY
ANN

A good day to you all,
Steve with the sick father, I was just wondering how you both are doing
today. My thoughs and prayers are still with you both for continued
recovery.
Love to all, and have a happy day.
HAVE A NICE DAY
ANN

Steve;
That is great about your father. This group sure is amazing isn't it!
I'm sending a little poem that a pen pal had sent me a while ago. I think
this pretty much sums up our wonderful group.
When I am lonely
When I am blue
I thank the Lord
I still have you!!!
Love to All
Anne

Steve I am so happy for you and your father. I know things will continue
to improve because how could they not with so many prayers going up in
your behalf. Now maybe you can start to get a little rest. Watch your
email I am sendig you someting. Regards and God continue to bless and
keep you.
For everybody else a good morning. Hope all are doing well. Take care
and Love to all.
HAVE A NICE DAY
ANN

Steve, so glad your father is doing good and at home. Yea!!!! Keep us
updated.
Ok, guys, all our prayers and good vibes worked. I am so thankful for this
group. I have told my husband if anything should happen to me, please write
to the list and let them know.
Steve, this gal in TX will still be remembering you and your family in her
thoughts and prayers.
Love & Hugs, Bonnie

to all,
my father came home today,tuesday!his temp.broke so the infectious disease
dr.said we could take him home.he is doing great!he dtill has a long way to go
but we are taking it one day at a time.
thank youall for your prayers,good thoughts and vibs!!!keep them coming.
i got this web tv so i can use the web in and jut of bed!my e=mail is
steves524@... is 3am and i am beat so goodnight.thanks again.
steveschiavo,jr

Is every one still asleep this fine beautiful day. Another nice one in
Louisiana, that means more work in the yard. I love to work in my yard.
Hope everyone is feeling as good as I do today.
Jsut wanted to say hello.
Take care and God bless.
HAVE A NICE DAY
ANN

Hi Karla,
How are you,
We have not heard from you for a while, and I was worried!
How is everything?
Is there any chance that you might make it to the dystonia symposium in Canada
in may?
I am planning to attend and it would be so great to be able to look forward to
meeting someone there!!!
Have a great day -
Kathy
littlebit@...

Gail,
along with everyone else, being happy for you doesn't even cover it. it is
miracles like this that have no name. Wishing you good health for a long,
long time - Karla

Congratulations, Gail! This is truly Thanksgiving day!
Love and prayers,
Sue

Gail I am so happy for you. Prayers and love to you in your continued
recovery. God bless and keep you.
To every one out there I hope you are having a good day. I am for the
sun is shining in Louisiana today. We had a few days of rain.
Love and prayers to all. God Bless.
HAVE A NICE DAY
ANN

Good morning,
I just had to share my good news with my good friends on this list. Today is
a special day for me ... it has been nine years since my surgery for breast
cancer. I don't think I stood a very good chance of making because I had
seven lymph nodes involved. But, after 29 radiation treatments, six
chemotherapy cycles spread over eight months and two very difficult to heal
absesses and lots and lots of prayers, I AM STILL HERE!
I lived to see six more Grandbabies born and God willing, I will still be here
to see the new millinium. I owe so much to my great doctors and nurses and to
all my friends and family who added their prayers to mine. Today and every
day I send prayers of Thanksgiving, maybe some of you will join me today.
Thanks for all of your support.
Prayers to all,
Gail

I enjoy reading all the mail that comes my way, Hope all have had a good
day. Mine was nice. My son and Daughter in law took my husband and I
out to eat and walk the mall. that is probablllly the first time I have
been to the mall in 5 years. Of course I couldn't resist the new spring
shoes.
Steve I am glad your dad is improving. and My prayers are still with you
both. I have gotten so much mail the last few days that I just could not
respond to it all individually. Thanks to all who wrote and I feel I
know each one of you personally. Keep them coming, You can't imaginge
how much better I feel mentally since I have found all of you, but I
suppose you do knowl Thanks a heap and I love you all. God bless!
HAVE A NICE DAY
ANN

To all,
Thanks to everyone for getting the ball rolling again. Welcome Ann, yes you
did it right this time. Sorry you have to join this ominous group but I'm
sure you will find it informative as well as warm and fuzzy!
I have both ST and SD, but only get Botox for the ST and just deal with the
SD. I take Klonipin in the day to function and Zanaflex at night to sleep.
Right now my current trauma is fighting insurance companies AGAIN!!!! I have
United Health Care HMO through the school system and just received a letter
from my doc that they won't take me anymore because the insurance company
hasn't paid them. THIS IS THE SECOND TIME THIS HAS HAPPENED. I am so fed up
with the whole thing. I am sending both rejection letters to my union, the
insurance commissioner, 60 minutes, and the president if I have to. Something
has got to be done about this. So sorry to complain so much but it's really
frustrating when you are suffering. Plus the stress doesn't help the dystonia
one bit. Is anyone out there able to buy supplemental insurance with this
pre-existing condition?
Kay, you mentioned someone asking if you were ok on the phone. I get that all
the time. Last week I had the bronchitus from a cold and called my doc for a
prescription. His nurse spoke to me then told the doctor I sounded really
awful and needed to come in. So I went in and got no prescription, said it's
a virus and just let it run it's course. Bottom line--because I sounded so bad
from the SD, I wasted my time!
Sorry to all for being such a downer, but that's the situation. Other than
that I'm fine. Good Health to everyone.
JoAnn

Hi Kathy,
I, for one, will not be going to Canada. I sure wish I could because I think
it will be a wonderful experience. But unfortunately, I have agoraphobia and
don't fly. When I feel the need to get to fresh air, it's like right now!
It's been quite a while since my last anxiety attack and I'd like to keep it
that way. Since I live in Northern California, it would be a long walk.
It would be such a treat to get to meet all of you. I've been trying to think
what we could do to get a little better acquainted. Would anyone consider
writing a little bit about themselves, enclosing a picture and sending it on
to another member who could do the same until it makes the full circle.
I only think of this because I know of a family who does this with letter
writing so every member gets all the latest news. In their case they just
take out their first letter when it gets back to them and add a new one with
updated news.
Maybe some would think this is getting too personal to be moving away from the
computer and cyberspace, but I've often tried to picture all of you as I read
your messages. Just a thought ...
Prayers to all,
Gail

I clicked, but nothing happened, what did I do wrong?
Kathy
littlebit@...

Hi Bonnie,
I tried to write and send pictures but they can back undeliverable. I
thought I had your e-mail address correct but I guess not. Could you send
it to me again. I'll try again tomorrow. Hope your weekends going well.
We were at a stallion expo at MSU today. Laura's putting together a
tentative schedule of horse shows she wants to go to. Her dream is to go
to Texas and participate in the Nationals. Maybe someday we will meet in
person.
Kay

I hope all of you enjoy this as much as I did. Click on blue and enjoy.
HAVE A NICE DAY
ANN

Hi Ann,
I just wanted to say Hi! and welcome you to our little group. We all have
different problems, some much worse than others. We do like to share our ups
and downs and even side to side in some cases. Please feel free to jump right
in and tell us about yourself and ask questions cause some of the folks here
have answers! :-)
You'll find that we seem to go in spurts with our e-mail. There will be a
lull, then everyone just jumps back in. We hope to hear from you soon. If
you feel like it, why don't you tell us about your Dystonia. I am one of the
fortunate ones who only have Spasmodic Torticollis.
Prayers to all,
Gail

Hi to all,
I was just writing to Donna Mae in Michigan. She had asked about the ST sites
that I had bookmarked. I went through my "Favorites" list and decided to send
it on to all of you, too. You may already have all these sites, but just in
case ... And since they are not all just ST sites there may be something of
interest for others, too.
Maybe if any of you have other addresses you could share them with us, too.
It never hurts to have a few more places to search for answers.
I hope I'm not crossing the line in giving these out on our Dystonia list, if
I am, I apoligize in advance. It sure won't be the first time I've goofed!
<A HREF="http://www.bluheronweb.com/nsta/nsta.htm"
Torticollis Association</A
<A HREF="aol://2719:2-2-Dystonia"
on AOL so you may not be able to get it.
<A HREF="http://www.dystonia-foundation.org/asdboard/asd1.html"
Dystonia Bulletin Board</A
foundation.org/asdboard/asd1.html
<A HREF="aol://5863:126/mB:107469,date%200898228823-0900824423"
Tremors, Twitches</A
<A HREF="http://www.movementdisorders.org/"
http://www.movementdisorders.org/
<A HREF="http://neuro-www3.mgh.harvard.edu/interaction$/chat/index"
Neurology Chat Rooms</A
www3.mgh.harvard.edu/interaction$/chat/index
<A HREF="http://www.wemove.org/"
for Movement Disorders</A
http://www.wemove.org/
<A HREF="http://www.geocities.com/~shaky-mtl/"
</A
<A HREF="http://www.dystonia-foundation.org/"
http://www.dystonia-foundation.org/
<A HREF="http://www.execpc.com/~dystonia/index.html"
Dystonia Inc.</A
Prayers to all,
Gail

Hi all!
I've been following the few messages that have been posted lately and it
has been quiet. Speaking of quiet I'm still without much voice since my
last Botox treatment 7 weeks ago. This is a stage that is only supposed to
last 7 days not 7 weeks! Its been very difficult but I know there is
nothing I can do except wait. On the positive side of sounding so bad, a
salesman called the other day and when I answered the phone he said, "you
sound really sick, I'll call back later." At the next treatment the doctor
will cut the dose of Botox in half again. I asked him if the prednisone
that I take could be slowing down the return of my voice and he said it
could if it is causing muscle weakness. Does anyone else on the list take
steroids as well as getting Botox treatments? The prednisone is for a
condition unrelated to the SD. Anyway its good to see some activity on the
list.
Kay

Hi all , my first time hope it gets where it is suppose to. Rainy day
here in Louisiana. Had a couple of beautiful days for flower planting
HAVE A NICE DAY
ANN

This is my first time to figure out how to do this. Hope it gets through. Rainey
here in Central Louisiana. Had several beautful days for flower planting. Have a
good aftrnoon and weekend to all
Ann

I have been wondering the same thing. True, I did not add a lot, but I
learned a lot from the others. I an in college, so there are times when I
just have to attend to that, but I always listen!!! I am going to try to
attend the symposium, I went to one years ago and it was so validating!!!!
I would love to know if there is anyone else who is planning to attend, we
could plan to meet!!!!
I hope that they are better and do not require this format to relieve their
suffering any more!!!!!
How are you????
Kathy
littlebit@...

Hello Everyone,
The onelist has been soooo quiet out there. Is there some reason? Anyway
hope everyone is quiet because they are getting on with their lives and not
just sitting around suffering. Maybe we need to stir up some controversy!!
Anyone going to the conference in Canada? I would but it's way too far for
me. Karla, Ann, Kay, Missy, Bonnie, and anyone else I didn't mention--are you
out there? I'm getting bored not getting any mail!!
Lonesome, Jo Ann

I would just like to wish everyone a nice day.
Even though I hurt everyday(like everyone reading this) I try to (TRY)
to stay half way chipper about life. It does cut down on wrinkles.
Hakuna Matata! Deborah

Steve, I copied this message and posted it to asd newsgroup and the asd BB
for you.
You and your family will be in my thoughts and prayers.
Take care.
Bonnie in TX

Steve,
My thoughts and prayers will be with your father, your family and you
tomorrow. You all show great courage.
Kay

plz send me link not to onlist
thx in advance
ellie

To All,
All the pre-op is done and my father has his brace and ready for the
surgery!
Day-Tuesday,March 9th at 12:45pm EST.At North Shore Hospital on Long Island
in NY.My fathers name is Stephen D.Schiavo,SR..My father will be admitted to
the hospital at 10:00am on March 9th and will have his back surgery at
12:45pm.My dad has Spinal Stenosis,arthritis,and 4 degenerative discs of the
spine.The operation is just for the spinal stenosis.He might need a second
surgery in the future(lets hope not)??
Please keep a good thought for him on Tuesday at 12:45pm,EST that
everything goes well.After the surgery there will be a few days in hospital
and a 3-4 month recovery period at home.
This June 19th my mom turns 70 and on July 9 it will be their 50th
anniversary and my mom wishes that my dad will be able to have one slow
dance as does the rest of the family!!!!!
If someone could please post on the newsgroup because I cannot access
it.Thanks.
Steve Schiavo,Jr
Stephen D.Schiavo,Jr
steve524@...

Hi Anne this was nice to read. It helps on days like this.
Deb

Hi Ken,
Sorry to hear about the floppy neck. Been there, done that, got the T shirt!
Do you have a soft cervical collar to wear during the floppy times? Realize
just how much your head weighs and that your neck muscles have pulled a
temporary no-show. They will gradually come back and you will be in control
again, at least for a little while. We must live for the "Good Times". I'm
happy for you that one of your good times was Valentine's Day. Good
planning!!!
One of the newsletters featured Lynn Johnson of For Better Or Worse. She
actually has Dystonia herself. If I remember correctly, she was recently
diagnosed. She has a wonderful sense of humor...says that for some reason her
Dystonia only acts up when she is laying down. So according to her, if the
party gets dull, she just lays on the floor and goes into her "act". She
certainly has the right perspective. Must be why her comic strip is so good.
Well, Ken, keep your chin up :-)
Prayers to all,
Gail

Hi all:
I received this today and thought I would share it with all of you. I
hope you enjoy it as much as I did.
Anne

Kay, my prayers go out to you and your family.
God Bless,
Sue

Hello
Prayers really do work and support from each other does help.My recent
Botox brought a lot of relief for awhile.I was able to drive 200 miles
to a support group meeting,go on a wonderful date for Valentines day and
was even planning on returning to work this week.But the Botox is
kicking in too much and it's hard too keep my head up now.From Mr.
Twisty to Mr. Floppy.O well what do you expect from a thousand dollars
of intensely painful injections.Got to keep a sense of humor.I found out
that Lynn Johnson the creator of the comic strip "For better or Worse"
supports Dystonia awareness and I just read an interesting book
call,"Dystonia,The Disease that Distorts"...well I'm kinda rambling here
so have a good weekend everyone.....

My mother-in-law passed away early this morning. It was not unexpected as
she had been suffering for over two years from a blood disorder. We saw
her on Sunday and said our goodbyes. She was mostly incoherent but when we
left I hugged her and she told me "to have a good life." She was a good
friend to me, a caring mother to my husband and a wonderful grandmother to
our three children. She will be missed by all of us but I am grateful that
her suffering has ended. Please keep our family in your prayers.
Kay

Lori, what a great story. A real "keeper" and one we should all learn to
live by.
Bonnie in TX (not so embarrassed anymore)
p.s. thanks to all for the replys to my "oops" letter. I guess I should
have realized that I could count on this list for support in all areas of my
life.

Hi Bonnie,
I have been thinking about you a lot since you sent the mesage that you
weren't doing too well. I am so glad to hear that you had tests and they were
both NEGATIVE! What a thrill. That angel is sitting on your shoulder
watching out for you.
Since I've had breast cancer, I know the feelings one has while waiting for
biopsies. It's hard to explain to someone who hasn't been there. I just had
my Mammogram and was nervous during the wait for the results. No change since
one year ago, Yipee! I'll be nine years out from my surgery next month which
is cause for celebration.
Good luck with the new chiropractor. It sure doesn't look like you have
anything to lose and everything to gain. That little angel will be riding
with you!
Prayers to all,
Gail

Shake It Off And Step Up!
The parable is told of a farmer who owned an old mule. The
mule fell into the farmer's well. The farmer heard the mule 'braying'
-
or - whatever mules do when they fall into wells. After carefully
assessing
the situation, the farmer sympathized with the mule, but decided that
neither
the mule nor the well was worth the trouble of saving. Instead,
he called his neighbors together and told them what had happened ...
and
enlisted them to help haul dirt to bury the old mule in the well and
put him
out of his misery.
Initially, the old mule was hysterical! But as the farmer
and his neighbors continued shoveling and the dirt hit his back ... a
thought
struck him. It suddenly dawned on him that every time a shovelload of
dirt
landed on his back ... HE SHOULD SHAKE IT OFF AND STEP UP! This he
did, blow
after blow.
"Shake it off and step up...shake it off and step up ... shake it off
and step up!" he repeated to encourage himself. No matter how painful
the
blows, or distressing the situation seemed the old mule fought "panic"
and
just kept right on SHAKING IT OFF AND STEPPING UP!
You're right! It wasn't long before the old mule, battered and
exhausted,
STEPPED TRIUMPHANTLY OVER THE WALL OF THAT WELL! What
seemed like it would
bury him, actually blessed him...all because of the manner in which he
handled
his adversity.
THAT'S LIFE!
If we face our problems and respond to them positively,
and refuse to give in to panic, bitterness, or self-pity ...
THE ADVERSITIES THAT COME ALONG TO BURY US
USUALLY HAVE WITHIN THEM
THE POTENTIAL TO BENEFIT AND BLESS US!
Remember the Gift He gives ...
* * *FORGIVENESS--FAITH--PRAYER--PRAISE and HOPE* * *
All are excellent ways to "SHAKE IT OFF AND STEP UP"
out of the wells in which we find ourselves!

Sorry, gang, I meant this to go private to Ramona!!
But, now everyone knows about my difficulities concerning my breasts!!!
How embarrased I am.
Bonnie

<A HREF="http://cgi.pathfinder.com/time/digital/daily/0,2822,20090,00.html"
Click here: TIME Digital - February 19, 1999: A Disabled ...</A
Hi to all,
If you have a few spare minutes, click on this site and then go to her
magazine. Her name is Hero and she truly is one. If you scroll down through
this 5th issue, you'll be able to open one of the first issues where she talks
about herself. By the way, Hero is 12 years old.
Prayers to Hero and all,
Gail

From the Onelist Team:
Hello,
Recently there have been several reports of a virus being passed through
lists in attachments. The virus, called Happy99, modifies infected
computers so that they spread the virus to other computers through email
attachments.
For more information on this particular virus, and how to remove it, visit
the following web page:
http://www.symantec.com/avcenter/venc/data/happy99.worm.html
This is a good time to remind people that, in general, they should not
open email attachments or run programs from people they do not know. That
is how this and other viruses are spread.
Thanks,
The ONElist Team
=======================================

Hi Gang(s), ::sorry for cross posting forgive me if you get this twice:::
I saw a show on cable Discovery channel (Wed. night 9pm) the name of the
segment was "The Spring in Your Step". The gist of the information presented
was using "springs" to assist mobility The two names that I caught were Dr.
Tom Roberts (Harvard 'something" Feild) and Huge Herns (sp?). I was
absolutely floored by the information presented and by the possiablities that
something so basic could be of such assistance for my two boys who have "gait"
issues due to unbalanced "muscle" tones. If you've any information please
email me at Elf808@... I'd really appreciate it greatly. Thanks!!! Elf in
Tn...Romona
http://members.aol.com/elf808
http://pages.hotbot.com/family/elf808

Sue,
You come up with great ideas!!Dads surgery is going to be on the 9th of
March,time unkown yet??He has to go for some pre-op testing,a general
check-up,give a pint of his own blood,and get fitted for a brace before
March 9th(all appts.were already made!!)He is going to have at North Shore
Hospital here in NY on Long Island.I'll keep you posted as to the time when
I find out??
Steve
Stephen D.Schiavo,Jr
steve524@...

Thanks to all of who have sent Get Well Wishes for my dad's surgery on March
9th!!
Steve
Stephen D.Schiavo,Jr
steve524@...

Feb 16th is Elf's birthday ( from the ASD NG)
Let's send her lotsa cards/ I do not think she checks this list that
often and we could surprise her and thank her for what she set up for
us-- Sue (please no responses )

Dear Edward,
Wow, you've really been through it, haven't you. I'm not sure what you
have, have not heard the term, but I've learned that any chronic pain is
horrible and we all need to support each other. I am glad you are doing
better, and hope the progress continues.
Best to you- Karla

Dear Ann,
Oh, thank you so much for sending the list. God, if I'm lucky, I'll find a
good one, and one that my HMO accepts. That would be wonderful. The best
part would be finding one so much closer, with compassion and
understanding
I'll never forget all you've done for me, I don't ever want to see you
down, where I hit, but I hope some day I can do something for you.
Thanks - and Love - Karla

Hi Karla:
I am so glad that your feeling better. I am going to copy some of the
Drs. from the list, just the ones that treat all forms of Dystonia. I
don't know any of these Drs. so use your own judgement. Listen to what Sue
has to say, she sounds like a wonderfully informed person. I hope you can
find someone that is closer, and has a little bit of compassion! Good
Luck, and maybe someone out there that has seen one of these Drs. and has
an input on them, PLEASE let us know! Ok, here goes!
Harvey M. Friedman (Neurologist)
Akron General Medical Center
400 Wabash Ave.
Akron, OH. 44307 Phone-- 216-384-6262
James D. Burkholder (Neurologist)
Stark County Neurologists, INC.
4575 Stephen Circle N.W.
P.O. BOX 35006
Canton, OH. 44735 Phone 216-494-2097
Frederick J. Samaha (Neurologist)
222 Piedmont Ave.
Cincinnati, OH. 45219 Phone 513-475-8730
Michael Schmerler (Neurologist)
8973 Terwilligers Trail
Cincinnati, OH. 45249 Phone 513-241-2370
Colin M. Zadikoff (Neurologist)
111 Wellington Pl.
Cincinnati, OH. 45219 Phone 513-241-2370
Erwin B. Montgomery (Neurologist)
Neurology, Desk 590
Cleveland Clinic foundation
9500 Euclid Ave.
Cleveland, OH. 44195 No phone number is listed.
David E. Riley (Neurologist)
Mt. Sinai Medical center
Neurology Division
One Mt. Sinai Dr.
Cleveland, OH. 44106 Phone 216-421-3813
Harvey M. Tusker (Otolaryngology)
Centers for Otolaryngology
11201 Sheker BLVD.
Cleveland, OH. 44104 Phone 216-595-0700
John A. Burns (Opthamology)
Ohio State University
340 E. Town St.
Columbus, OH. 43215 Phone 614-221-7464
George W. Paulson (Neurologist)
Ohio State Univ.. School of Med.
1581 Dodd Dr.
371 McCampbell Hall
Columbus. OH. 43210 Phone's 614-688-4048 OR 614-688-5722
James Auberle (Neurologist)
Toledo Clinic Inc.
4235 Secor Rd.
Toledo, OH. 43623-4231 Phone's 800-282-0530 OR 419-479-5560
Robert L. Gillilard (Neurologist)
540 Parmalee Ave. Suite 510
Youngstown, OH. 44510 Phone 216-744-4303
WOW, this is a big list, and these are only the ones that treat all forms
of Dystonia. If there is ever anything else I can do for you please feel
free to ask. Good Luck Karla, I hope you can find someone closer to you
and that will do a little better by you.
Anne

Hi All,
I wanted to send this letter to the list just in case Wendy didn't contact
everyone herself. She is asking that we all send an e-mail of a few
paragraphs to each TV show as she announces the addresses so all of our mail
will maybe get some attention. I don't know Wendy, but I can tell she is
putting a lot of time and effort into this and I think it would benefit all of
us if we give her a hand in this endeavor.
Her e-mail address is fightbk18@... if you have any questions.
Prayers to all,
Gail

Dear Steve,
I'm so sorry you have a dr. who treats you like that because you are on
medicaid. So much m needs to be changed in our medical system. I know
several prople who have the medical card, and they can't even get an MD to
see them, they can only get in to see ostopaths (sp) My daughter found
herself in a position where she had a medical card, I became so angry when
none of the Dr.s would accept her as a patient. The first question out of
their mouths, " what type of insurance do you have" As soon as the medical
card was mentioned, they'd say they weren't accepting new patients. I'd
call a few minutes later, ask for an appointment,(being lucky enough so
have insurance) and when I told them what kind of insurance I had,, I was
immedicatly accepted. I told them to shove it because if they couldn't
accept someone who was down on their luck, they could give me a BIG kiss.
She ended up going to some quack who almost killed her and my first born
grandchild. I was about to kill the quack, when he had me physically
removed from the hospital by security. It was awful what he did to her.
This is supposed to be the greatest country in the world, but the medical
system sure sucks.
I do hope you feel better, and I wish you could find another Dr. Try to
take care - Karla

Dear Sue,
God, I hope the person who wrote that is okay. Did you ever find out who
it was? It's so sad, this shouldn't happen to people, and I've noticed
that the people what have this are the nicest people I would ever want to
know. You and all the others got me through a really rough time, when I
was in so damned much pain, I thought I WAS going to die, or at the time
just wished I would and get it over with. That was just stupid thinking on
my part. I have some people I'd leave behind who would never get over it,
and I'm raising a grandson who would have no one else, and would without a
doubt be placed in a foster home, and I swear that will never happen to
him. And when I feel better, I'll be able to do things I've not been able
to do for a long time, and I plan to make the best of it. Back here in
Ohio there is a saying, "Make hay while the sun shines" and that is what I
plan to do.
Thanks so much for everything - With Love and Affection - Karla

Steven, I will say a prayer for your father AND you!
Lori B

Steve, I will mark the 9th on the calendar- and we all will pray for you
to find better medical help that is a very general need for us all.
Karla, there was a Goodbye post on the ASD BB that worried us all and I
wrote to make sure everyone in our group was OK and you were at the
doctor and no one could get in touch with you...I heard that the poster
of the suicide note on the BB was from AOL- we were just trying to make
sure you are OK-
Secondly-- As I said - probably while you were gone on your botox
adventure- that I have the Ohio List and there are 2 on there that I
have heard some bad stuff about-- the one we talked about being "dart
board" early,privately, and the other is in Cleveland.
I will again mention Dr Auberle in Toledo- he is great but not included
on the DMRF list,
He uses phenol as well as botox, and has for about as long as Massey
although I do believe she was the first.
Glad you made it to Dr Massey's and back safely and got through to her
about your needs-too bad that we have to do so much on our own but that
is just the way it is I guess--gotta forget those fairytale doctor
stories our Mommas told us with a kiss that they would make it all
better<<G
Sue

My doctor is a "paper pusher"!!Because I am on medicaid and medicare he just
fills all the paper work and signs my prescriptions when I see him every six
months.His examination is a joke!!I know that not much can be done(that I
don't already know or tried over the years) but at least he could show a
little interest.I have one excellent doctor who takes care of urological
problems,Dr.Joel Greenspan!!
Steve
Stephen D.Schiavo,Jr
steve524@...

My dad's back surgery is set for March 9th.Please say a pray for him!
I have gen.dystonia since the age of 7,paraplegia-T7,T8 since age 23,blind
in right eye,one kidney since age 24,and now age 43.Younger sister,Kathy,has
dystonia too.Please keep us in your thoughts on the 9th of March.Thank you.
Steve
Stephen D.Schiavo,Jr
steve524@...

Bonnie,
Kiddo your in my thoughts and prayers too .... we'll be sending "good vibes"
over there to TX from all the "elves" here iN Tn....Romona and Crew

I have not heard from Karla either,
Karla, please let us know you are alright?!
The list is empty without your input, we miss you!!!!!
Kathy
littlebit@...

Hi Karla;
Would you please let everyone know that your alright? I am still waiting
for the list from the DMRF. As soon as I get it, I will send it on to you.
Please, Please let us know how your doing!
Anne

http://www.dystonia-foundation.org/asdboard/asd1.html
The first link I gave takes you to the index which can be confusing so the
above link takes you directly to the current postings.
Bonnie

HI Jack, this is a message board for people with all kinds of dystonia.
The ASD newsgroup through Usenet is still going strong too.
Hope you can click on, if not e-mail and I will send it directly, not
through the onelist-- Sue

HI SUE
I Fine. What is ASD BB?

I want to check on all of you--there is a "Going Home" post on ASD BB--
they have asked for all who post there to check in.. this is an
excellent idea.
I am not good with the right kinds of words for this kind of thing but
we are a good group that probably has links to this person. Maybe we
can reach them before it is too late- that it was just a middle of the
night post--and they are here to see the light of day and that things
look better-- gee I just do not know-- I hurt, worry for this person and
just wish I could do something..
Love to all, Sue

Hi - I saw your posting. What are the symptoms of generalized dystonia? I'm
curious. I can't seem to get a diagnosis yet. Would you kindly share this
info. with me? Thanks BHCHCACTUS@...

Kathy and Anne,
You have both mentioned rotator cuff problems. I have had problems with my
right rotator cuff for two years. I am right handed. The first orthopedic
doctor I saw did xrays and an emg but ended up telling me I would have to
live with the problem. I was in incredible pain and could not accept that.
When my arm was jarred the pain would send me to the floor. I was losing
the use of my right arm. My rheumatologist sent me to Dr. Janda in
Ypsilanti. He specializes in shoulders. With just one xray he said I had
a bone spur digging into my rotator cuff. He did arthroscopic surgery to
remove the bone spur and 3 stages of scar tissue. Recovery has been long
and painful. When I started PT after surgery I couldn't even get a towel
under my arm. Gradually I have gotten to the point where I can lift my arm
shoulder level. Although it still gets achy I don't have the horrible pain
when my arm is bumped. I am still getting steroid shots every 6 weeks. It
allows me to do the things I wish such as sewing and cross stitch. Dr.
Janda is a terrific doctor. He has done over 2,000 rotator cuff surgeries.
Don't easily accept someone saying nothing can be done. We face enough
losses that if something can be fixed, it should be. Also, be cautious
about PT until you have an accurate diagnosis. I think the PT I had before
the bone spur was removed increased scarring.

Kathy,
I have generalized dystonia. I have had it for over 45 yrs. I also had
troubles with one of my shoulders for 5 yrs, I finally had to have surgery
for a torn rotator cuff and tenitis, the doctor also found some artrititis
in there and scraped it some. The recovery was painful too say the least,
the therapist knew nothing about dystonia and were making other parts of me
hurt. I finally told the doctor I was not going back.
I use a 3 wheeled scooter, when I can't use my wheelchair or crutches.
I dont know that much about Botox, I have only had one treatment and it did
not help me.
So I am not going back to that doctor, that's all he wants to do for me. I
used to get cortisone shots in my shoulder for many years, until it got to
bad.
I hope you find some relief. I will be praying for you.

thx for the info :)
ellie

Dear Anne and Karla.
I certainly was worried about Karla too and the 6 months, if botox
helps, sounds so cruel, so I had contacted you about Dr Auberle. And
I know that I copied the list of other Ohio Doctors to someone, do not
think it was you, but I know we talked about the one - so I did not
want to recommend anyone that might not come close to Dr Massey...
So Karla I hope that you are able to find a good Dr and get some help
because it does not seem right that Dr Massey would give you 3 months of
feeling rather well and then make you wait in pain for 3 months more, in
addition to your missing your appt due to the weather--
I have flown to Jankovic in TX, and then I found Dr Auberle, who is a 3
hour bus trip for me as I can not drive that far. But it is very
important to have a good doctor. Massey is at the top of most lists so
it is hard to just go to someone on a list that the DMRF puts out when
we know that there are at least 2 on there that o not use EMGs---but
neither does Jankovic or Cullis-- so that is another point of
difference- and I can not recommend any others on the list to be in the
ballpark of Massie--
So I hope that Karla can get to someone good and get help as soon as
possible.. I have not had botox since 1997 as I have too many muscle to
do any good any more..I am just rambling here
Sue

Hi!
Sue, No, I don't mind that you may have already sent the paper work to
Karla. I was just so upset with her e-mail about suicide, that I had to do
something. I know what she is going through, because I've been there also.
My thing was, it was the Workers Comp Drs. that were giving me a real hard
time. Between Workers Comp., their Drs. and work itself, I was a total
basket case. It was bad enough I was in severe pain, and to have to deal
with that too. So I wanted to help in any way I could.
Karla, you are so welcome. I'm not to sure if you do have the list, but I
will but the names and addresses on the Internet if you want. Or you could
send me your address, and I can mail it directly to you. Please never
think you are alone in this, we are all here to help you, and each other.
Take care, and I'll be looking forward to talking to you again.
Anne

Dear Ann,
I can't tell you how much I appreciate what you are doing. I actually
cried when I read your letter. If I could find a Dr. closer, who would do
the injections closer together, I will find you and give you a big kiss, or
kiss you feet, LOL. Going through this for so long has been nothing but
hell, and as I'm sure you know how horrible it is. You're a wonderful
person, and a great friend. I'll sure be looking for your mail.
I can't thank you enough - take care of yourself too - Karla

I think Gail should send the Man on the Moon joke..lol...missy

To All,
Sorry I haven't been around but my father might need back surgery??He
went to a spinal specialist last week and he wants surgery next month.Today
my father went for a second opinion and the doctor wants him to have a CT
Myelography and then go see her after the test and then go from there??My
dad has only had an MRI of his spine in Oct.!!My dad has spinal
stenosis,arthritis,and 4 degenerative discs which is causing him a great
deal of pain when he tries to walk.
If any knows of this contain or has it please e-mail me.Thanks.
Steve
Stephen D.Schiavo,Jr
steve524@...

Hi Karla!
I hope your feeling a little better today. I just wanted to let you know
that I contacted the Dystonia Medical Research Foundation. They are
sending me a list of Drs. that are located in Ohio, that treat Dystonia.
As soon as I receive it, I'll pass it on to you. Please hang in there, and
hopefully in the next few days, I can send the list to you. Lets hope the
"snail mail" isn't true to it's word this time. Please take care, and I
hope to hear from you soon.
Anne

Hello Everyone
I got an E-mail from a woman named Wendy who is starting a Dystonia
Awareness mailing
campaign.If your interested please write to her at: Fightbk18@....

Dear Chris,
I don't know how to make a web page and I don't have a scanner.Alot of
people here will be able to help you with your page.Sorry to hear about your
dystonia and I hope you get some sleep.
Take Care,
Steve

has no-one any notes gifs etc etc they can send sue.doran@... to help
us develop the dystonia page?
:-((((
http://homepages.which.net/~chris.sivewright/Index.html
go see the dystonia page

Thanks for the laugh, Gail... and I really needed one today! =)
Sherry
(Fellow ST Sufferer who is really suffering this week!)

Hello everyone here in Dystonia Land (wish I was in Disney Land instead
)
Well I had my 2nd Botox at Mayo last Tues. 350 units this time in 10
different spots.That EMG
really hurts but I think this time its worth it.I'm starting to feel
some releif.still a bit sore and
painful but I hope it gradually improves.I may even try to go back to
work for the first time in
6 months.I got a chuckle out of that Man On the Moon thing Gail,thanks.
I asked my Neuro there at Mayo about Valtrex since some people seem to
suspect a virus for
ST but he hasn't heard of anyone getting benefit from it for ST...but he
didn't discount it either.
I may be speaking with the Cheif Neuro there sometime in the near
future...many more questions.Take care friends.....:)

Hi to all,
Just had to ask if I am the only one who notices that the Man in the Moon has
Torticollis a few days after the full moon? I asked my doctor if she had ever
seen it. I think she thought I had gone over the edge! :-) and for you right
lookers ... (-:
Prayers to all,
Gail

Sue,
I was diagnosed last year with focal dystonia (writer's cramp. Two years prior
to my diagnosis, I had an ear infection that would not go away. I never had ear
problems before. I went to three specialist. I finally got it under control.
Now I wonder if the ear infection brought on the dystonia. I would appreciate
any comments that you have on this subject. This is my first visit to this site
and I'm not quite sure how it all works. Hope you get this.
Lori

Dear Kay,
I read with great interest your comments about the Dr.s in Ann Arbor. I
have to travel all the way from Ohio to Duke U. in NC< and I just can't do
it any longer, and the Dr. spaces the treatments out to six months or more,
more than half of my life is spent in horrible pain because of the time
span. Is there any way you can let me know who these Dr.s are and if there
is a way I can see them. The pain is suffer, is unbearable, and the other
night I was honestly considering susicide because I just can't take it any
more. Any information you can send, I'd so much appreciate.
Thanks - be as well as you can - Karla

I posted in asd but got no responses. If you go to
http://homepages.which.net/~chris.sivewright/Index.html
you will see my website. i need a good gra[phic for the dystonia pages -
also some good text. if anyone has any ideas then please email:
sue.doran@...
It's 4.30 am in UK and I cannot sleep owing to rotating head thru
spasmodic torticollis!
This site is supposed to help all of us......read what it says about
oxford school of learning....explore those buttons...tell your
friends...make any comment......
zzzzzzzzzzzzzzz
chris

Hi-- I am sending this link that I found last night - if it is not
included in your letter--go to VEDA-vestibular disorders association..
for those who are interested in the link with the ears--
Gail, Dr Auberle suggested that I become a flight attendant....my family
doctor said he would buy me a plane..
But a strange thing, when I was reseaching way before getting on line, I
found out the first operation for ST was an ear operation--with over
30% remissions, one lasting 40 years.. the doctor that did this study
and operation died in the 70s and his research was passed to a
neurologist who does not feel the ear operation is worth the risk so
just gives botox--My feelings are that there has to be better technology
now and that the study should have gone to someone qualified in ear
operations--but they did not consult me on this <<G
I went to one ear specialist who looked in my ears and said I was
OK--great specialist- but I live in rural Ohio and there just are not
even knowledgeable neurologists..
The only 2 that I know of with dystonia that did go through the tests
for inner ear problems did not pass it -- one was given diuretics to
reduce the fluid in the ears and the other just added it to her line of
symptoms...
Gail I would be afraid to hang my head over the edge of the bed--but
will re-read it and see--my chiro said to do that to stretch my neck too
but the inner me has been afraid to do that---When I was in TX, seeing
Dr Jankovic, whose office is filled with other STers, I saw a lady who
could only look at the ceitling--my head falls down and that is very
painful and inconvient before it turns to the right to greet my
shoulder-- but I just did not see how she could function at all--I would
be falling over everything,,and I guess I am afraid to put my head
back--
Sorry that I have rambled-- but you know what--I think that in our
ramblngs of our strange symptoms is the way we might find the common
link that is a cause or leads to a treatment--
Happy Groundhog Day- Sue

Thank you, Gail, for the nice compliment..
I got a chuckle out of staying away from video cameras!
My son got a new one for Christmas and when they brought me my tape I
could not believe how much my head was bobbing about-- I would have
sworn that it was not--did not notice it at all in the festivities... No
wonder people stare at me!!!
You know I will keep putting my 2 cents in -- the thing that I have
noticed is how much fatter the population has gotten since aspartame!!
And as JoAnn said-- I am sceptical of the press and products that make a
mint--and the government- and all things big and small-- no paranoia
here<<G
I am back checking out the ear and viral connections-- seem to come back
to that every now and then..
There is lots going on on ASD BB about light and sound sensitivites,
that I found may be caused by the vestibular nerve that runs from the
inner ear then splits in part to the eyes and the other part down the
neck-- this nerve can be attacked by viruses....I just know that my ear
is connected to my ST but have not found a doctor to help. There are a
couple of threads about this on the STBB.
If I fly and it is rough enough to make my ears hurt I will have at
least 3 days symptom free of ST.. on the phone it activates my pain and
tremors...similar to how diet soda did..
Sue

Thank you, Gail, for posting this. The one point that I had felt about
diet pop, and think that I posted it, is the one fact that this author
does present as fact.. that if you have a problem with phenylalanine,
which is the precursor of dopamine and norepinephrine, then you should
watch it....that was the reason I stopped drinking diet pop since it did
increase my movement.
I apologize if I sent something around that has been proven to be a
hoax-- funny the first thing I post on ASD they said was a hoax-- about
the Vatrex study pointing to a viral link with ST,
I usually get my facts from the source ( which I had on the Valtrex) or
Medline and this one I did not check out! Sorry folks if I am
wrong....but I still think it could affect some with dystonia in the
good way if dopamine helps you and adversely if not..
Sue

Dear Twinkle,
My bible tells me I will get a new body when I reach heaven. Until then
I have to deal with this achy old one, lol. My wife don't mind, because she
has one too, she has Fibro.
Some days around here, it sounds like a chronic ill ward, when we compare
aches and pains.
I take Lodine for my arthritis, and Robacin and tegrol for my dystonia, most
of the time this allows me to get around with an manageable amount of pain,
then there are the times when nothing seems to work, not even pain
medication, especially when it shows up in the middle of the night,
OUCH!!!!!!!!!!!!
Hang In

Hi to all,
I found this on AOL tonight. Thought some of you may be interested since we
did talk about this a while back. This is an article from Time magazine
calling the aspartame scare a hoax. They even refer to the article we all
read before. I guess its for each one to interpret and decide for themself.
Just wanted to add a little more information to what we had.
Prayers to all,
Gail
<A HREF="http://cgi.pathfinder.com/time/personal/990208/health.html"
here: TIME.com: Personal TIME/Your Health</A

Jo Ann,
I too spend an awful lot of time at the doctors. I have 5 appointments
in Feb. I often I hear that nothing more can be done for some of my
problems. The great thing is, there is a treatment for SD that works! It
so nice to hear I have a problem that can be treated so effectively.
Anne and Bonnie, I should have mentioned in my last post that I also
appreciate your support. Although I've never met you in person, I feel as
though you are friends!
Kay