Wiki articles

It is great hearing from you. It has not been the same without you
WELCOME BACK!!!
Ann from Soddy,TN

Hi all, my name is Bernice Bowers and my husband Ken just passed away this
past June. I have been caring for him for 13 years and the last 6 was told
he had PSP. He was first diagnosed with Parkinson's and treated for that
for 6 years. But after his death, we donated his brain to Mayo in
Jacksonville where DR Dickson is doing the PSP research and he informed my
husband did not have PSP , but rather MSA. That had been mentioned about 7
years ago, as a possibility by one of the Drs. at Loma Linda in Ca. but
later was diagnosed at Ohio State as PSP.
Anyway, wanted to thank Pam for the invitation to join this group . Will be
interesting to compare notes with you folks. I have been on the PSP
listserv, almost from it's inception.
Thanks for being here.
Bernice

Pam- You responded to Misty, a new cbgd support group
member whose husband has been diagnosed with cbgd,
along with an additional diagnosis. You posted to our
group telling Misty that the symptoms she described
were those of sleep apnea. You indicated to the MSA
support group that no one from the cbgd support group
responded to Misty and informed her of this, including
the need for her to report this situation to her
husband's doctors.
I did! I wrote to Misty this weekend, immediately
after she has posted. I wrote a very long response,
numbering information in accordance with all of the
concerns she raised in numerous e-mails about many
symptoms and situations she has witnessed in her
husband. I indicated to Misty that the sleeping
disturbances she described were, as I thought, those
of sleep apnea, which could be fatal and to please
contact her husband's doctors right away. Perhaps for
some reason my very lengthy, blow by blow reply to
Misty was not included in a digest from our group to
you.
Please understand that we welcome members of the MSA
support group to the cbgd support group. There is a
great deal of experience, knowledge and familiarity
with cbgd and other Parkinson's Plus diseases that is
shared in our group. We also have the great privilege
of having a medical expert, who is very experienced
with Parkinson's Plus diseases, who subscribes to our
list. Dr. Hall has been known to step in and give us
accurate information and advice as she "reads" the
need.
I felt it was extremely important that the MSA support
group understand exactly what occurred in this
situation. Good heavens, to not have replied to this
MSA posting would have been very unfair to my fellow
cbgd group members. The MSA support group would have
been left with an incredibly inaccurate perception of
the capabilities and knowledge of these good people.
Kristine

Trevada
Try to watch his eyes. If it doesn't seem right to you, check with his
eye dr. Does it look as if a blood vessel has broken or just red lined
blood shot looking like he has gone without sleep for several days?
His eye dr might be able to asses it better. You don't want to take the
chance that there is some internal damage caused by MSA or something
else.
Good luck
You know someone is always here. We don't have all the answers but you
know we will do anything to help.
Sally

Nancy,
PD with OH, could just be a reaction to the PD meds or it could be MSA. Hang in
there.
Take care, Bill and Charlotte

Thanks, Pam. That sounds like what my mom had. Debbie
Debbie White
dwhite@...

Except for absence of autonomic problems this sounds almost exactly
like MSA to me. With MSA there doesn't tend to be much dementia
either but the physical symptoms are nearly identical.
Hugs,
Pam
Index:
What is Corticobasal Degeneration?
Is there any treatment?
What is the prognosis?
What research is being done?
Where can I find more information? (last updated October 28, 1997)

I've been looking in once in awhile to the Corticobasal Ganglionic
Degeneration (CBGD) forum at http://www.egroups.com/group/cbgd_support
CBGD is also a neurodegenerative disorder and considered a Parkinson's
Plus disorder as is MSA/Shydrager.
They have only about 150 members in their group, mostly caregivers I
believe. This note scared me because no one over on that list replied
to this lady and told her her husband had sleep apnea. If anyone has
time to join that list I think they'd benefit from some of our
knowledge.
Love,
Pam
--- In cbgd_support@egroups.com, "Pamela Bower" <pbower@i...
Hi Misty,
This is VERY important. Your husband has SLEEP APNEA. This is the
medical name for what is happening when he stops breathing for 10 or
more seconds. PLEASE tell his doctor and ASK for a SLEEP STUDY to be
performed on your husband so they can access him and recommend
treatment. This symptom IS TREATABLE! The raspy voice could possibly
be due to paralysis of the vocal chords... they would also be able to
check for this with a sleep study. PLEASE don't put this off... sleep
apnea is a very serious complication of neurodegenerative diseases.
It puts a strain on the heart and lungs and the patient can die
suddenly during sleep.
Good luck!
Pam

--- End forwarded message ---

thanx for response
i had pet scan at nih in oct....just received 1st rpt which i don't
understand.
i do have pd/oh. saw david goldstein md, phd, who found there are no
sympathetic nerve endings in heart (paper in annals of int med). I've been
referred to new neurol at end of yr. will keep you posted. THANX again to
all
nancy spires

Dear Judy
I am so pleased to see this news. I have been very worried about you both.
Michelle has kindly kept me informed about Marks progress. Just couldn't be
happier for you
Love and hugs to both of you from Anne.
The best and most beautiful things in the world cannot be seen nor touched
but are felt in the heart. Helen Keller

Sally,
Thanks so much for the information. My brother's eyes have been red
as blood. He went to his family doctor and the doctor told him that
he didn't have a clue what it was because he didn't know anything
about MSA. He treated him for pink eye and told him if it didn't
clear up, for him to go to the emergency room.
I was concerned that it might be something other than an eye
infection. That it might be caused from high blood pressure or some
other problem. I knew that if it was, some of you would know. It is
so nice to know that when problems arise, we can always count on this
group help. Thanks again for your help!
Trevada

a pg=picogram= 1,000,000,000,000 picograms per gram.
plasma dopamine levels for normal are < 30 pg/ml ml=milliliter= 1000 ml per
Liter
hope this helps.
Mark M.

i have a lab report received after hours and am curious if anyone can
translate for me: "arterial plasma levels of norephinephrine averaged about
65 pg/ml (below normal), with concurrent L-DOPA levels exceeding 1,000,000
pg/ml""
(pg = ?) = normal l-dopa levels = ?????????
thanx
nancy spires

Bill,
Think that every caregiver has this feeling. I know I do about Warren and
especially if I'm watching something on TV or a movie when it gets to the
main point he calls. Never get to see the end of anything.
Mary

Ok! I'll put the brick under my pc on the one side Anne, that maybe
why my neck is always stiff, it's leaning to the other side to off
blance the pc. See I knew it was good that you were back.
{{{hugs}}}
Vera

http://www.uic.edu/orgs/ncpad/
National Center on Physical Activity and Disability : The National
Center
on Physical Activity and Disability encourages persons
with disabilities to
participate in regular physical activity as a means of
promoting healthy
lifestyles and preventing development of secondary
conditions.

http://www.rehabinfo.net/
Rehabinfo Network : Neuromuscular Diseases Information. Our mission is
to improve the lives of individuals with neuromuscular
diseases by
developing and evaluating new strategies that address
lifelong needs for
research-based medical care and counseling,
psychosocial well-being,
education, and independent living.

You always need a bull with a Cowboy so from this Taurus I will not rub it in too much.

I was surprised and pleased at the sight too. Sorry about all of the injuries tho.

They made a big mistake when they fired the coach. But then that is what happens sometimes. They should have known the Cowboys would have been out to get them no matter what.

Love to ya. Barb

[INLINE]

Since I kidded Barb about the Redskins - Cowboys football game on list, I must give you the final score on the list.

Dallas Cowboys 32
Washington Redskins 13

We got whopped!!! Now known as the Deadskins.
[INLINE]

Since I was born in St. Louis and am an Aries, guess I will have to start rooting for the St. Louis Rams for the rest of the year.

Take care, Bill and Charlotte

http://www.justsaywow.com/floridasigns.htm

Please try to remember that when you hit the reply button when viewing a
digest that the entire digest is being posted back to the list unless
you specifically delete it. I'm sure you've noticed in the next digest
you received after that that it's all a repeat of the one before. What
might work best is to cut and paste the message you are replying to into
a new message and change the subject line to reflect the content of your
message. If you don't know how to "cut and paste" don't despair...it's
easy. :) Just go to this website to learn.
http://www.webmasternow.com/copyandpaste.html
Hugs,
Pam

Bill,
I wonder if it is the one sense accommodating for the loosing of
another?? i.e. hearing over sight?
nancy

Sheila,

I knew it was a joke and my reply was a sterotype joke also. However, as a caregiver, I think Charlotte does know the moment I sit down anywhere in the house, as that is when she calls. :o) Is that woman or MSA radar?

P.S. At 11:30 PM my time, I was long asleep, my grandson has to get up at 5:30 AM to catch the school bus. I already put a load of wash on this AM.

Take care, Bill and Charlotte

PS .. try to get some sleep

;-]

cheers

sheila

JETMEAD,
Those sound like normal meds for MSA. My wife does take more.
Take care, Bill and Charlotte

Hey Bill,

I am framing that one ... after sending to all the men on my e-mail list (as well as the ladies )

I grew up in the military (as a Navy Jr.) and I have seen men think in many ways ....

that e-mail was a joke .. a jest - a chuckle ..

cheers

sheila

Welcome back, Anne. We all missed you. Smiles and hugs, Diane

Sheila,

First of all on men's hormones - my long experience leads me to believe that men's hormones then to act in a distinctly different manner than described in the study you mention (which must have been conducted by a woman).

1. While a moose in a tutu may not disturb a man watching a football game, a woman in a seductive tutu (unless she looked like a moose) would definitely get almost every man's hormone's flowing excessively - getting him off his rear and make the football game history.

[INLINE]

2. Men do produce hormones which make them rebel at stupid orders. I witnessed this a lot in the military. Drill instructors probably give the most stupid orders on earth and 40 men do everything they can to get around those orders (like forming human ladders to hide dirty clothes in the ceiling tiles).

Women's homones.

You have read the data wrong here - married women do not want to exercise, in fact in #1 above the woman's hormones often immediately cause "headaches" and rather than fight a "headache" hormone the fight or flight men's hormone tells the man to go back to the football game as a man can not win a fight with a woman (women's tear hormones win every time :o)

The married woman's "no exercise" hormone also causes her to decide that just because she does not exercise is no reason that her husband should not keep the physique of Arnold S. so she orders him to move furniture (often right after work or during a football game). THIS triggers the hormone mentioned in #2 above and causes huge amounts of the male hormone called howthehelldidIgetintothisone (OS..). OS.. causes a lot of mental exercise in the male which often then causes active behavior on Sunday mornings such a golf or fishing expeditions. In truth these expeditions often end at the local pub, where the male can watch the football game with other males in the same boat.
[INLINE]

How about it guys, does this sound more like the real story :o)

Bill

John,
I'm not familiar with all the medictions you listed, but flourinef
and proamatine are for blood pressure and carbidopa (probably in
combination with levodopa??) is for parkinsonian problems. I think
comtan is for parkinsons problems too, but I'm sure Bill Werre will
know for sure. Not sure about the rest. Just to help you calibrate,
my husband Rob (age 54, diagnosed 3/98 and still, thankfully, doing
fairly well) takes 8 prescription medications - flourinef and
proamatine for blood pressure, amatadine and sinamet for movement and
cramping, ritalin for alertness, klonipin for sleep problems, detrol
for bladder control and miralax for constipation. To all of that we
also add Thermotabs (buffered salt)to help the flourinef work, Surfak
(stool softener) and a multi-vitamin. That's a LOT of pills! But I do
think all this has helped him stay pretty stable. So,if what he's
taking helps, it's not too much. Everyone on this list has a story
about not being able to tolerate some medication. The bad reactions
seem to be very individualized.
It's great news that your father is doing better. Your mother will
probably relax a litte as she gains confidence that he is okay with
doing some things for himself. It's hard not to hover!
Good luck,
Carol & Rob

Hello to all.
I have a question about medications that my father is
taking. Here is the list.Carbidopa,Comtan,Proamatine,Florinef,Zyprexa
Docusil. The rest seem to be laxatives. My question is this, "has
anyone had any problems with these or does this seem like too much
medication?
P.S. My father is home now and seems to be doing much
better than he was in the nursing home. My mother is very nervous and
will not let him do things for himself. I am working to get her to
relax and allow him to try things himself but it's not easy

Whoever is around come join us in the chat room.
http://home.inforamp.net/~pbower/msachat.htm
If you don't have the software you can download it from there as well.
Hugs,
Pam

Pam,
I wrote to them about two years ago and never got an answer. I think either Don
or Jim Todd told me they had given it up.
Take care, Bill and Charlotte

Pam,
That's 6 AM Monday morning for Anne :o) Bet she's not up then :o) You have a
tough time getting her to chat before about 8PM EST That seems like a good
time for most people, who aren't watching football games in the USA.
I have to watch the Redskins beat the Cowboys at 4:15 EST!!!!! Hi Barb :o)
Take care, Bill and Charlotte

Anne
Does that give you any indication of the condition of my brain right
now???? =:
Glad they finally figured out what the eating problem was from. Now
that makes a lot more sense. Guess you should have relied on that "gut
feeling" to begin with when you questioned if the by-passes were working
right. Lets see that was about 6 months ago wasn't it??????? Hind
sight is great isn't it!!?? =:
Sorry your dad is still having more problems. At his age (95 isn't it)
it is truly a wonder that he is still with us. I know the dementia
takes it's toll after awhile. My mother still has good days and bad but
the good days are few and far between now. Just remember, you did
everything possible to help keep him going for 17 years, dementia and
all.
Hope you and Tony are both getting some rest so you can get back on your
feet again. Sounds like your weather is setting in for a long hot
summer. We are waiting for our 1st really big snow storm right now.
It's due to hit us today or tomorrow.
Glad you're back with us
Sally

I loved this one!!
Sally

Does anyone know if they still publish this newsletter? I keep seeing
references to it out on the web but I don't know if anyone actually receives
this anymore.
Hugs,
Pam
http://readersdigesthealth.com/kbase/shc/shc361.htm
Topic: Shy-Drager Syndrome
SDS Advocate
International network. Founded 1993.
Provides information on Shy-Drager syndrome and related disorders, to share
coping strategies and caregiving ideas. Newsletter, information and
referrals.
WRITE:
SDS Advocacy
9835 W. Libson Ave.
Milwaukee, WI 53222
VERIFIED: 02/18/99
Copyright © 2000 American

Sunday , November 26, 2000

Today we present: Masculine Medical News for Men.

Our first item concerns what could be the most significant medical discovery for men since the invention of the electric nose-hair trimmer.

According to an Associated Press article sent in by alert reader Shirley Damiano, researchers at the University of Chicago have discovered that -- and here, to indicate the importance of this breakthrough, we will activate our keyboard's "Caps Lock" feature -- MEN NEED SLEEP.

The reason for this is hormones, which are chemicals that our bodies produce so they can take control away from our brains.

For example, men produce a hormone that compels them to watch instant replays on TV.
If a man is watching a football game, a moose could walk into the room wearing a tutu, and the man will not notice, because his hormones are forcing him to watch, possibly for the sixth time, a football player fall down in slow motion.

Women do not produce this hormone, but they do produce one that compels them to rearrange furniture, and another one that causes them to believe they can improve their appearance by using a tiny pencil to draw dark lines around their eyeballs.

So anyway, according to the University of Chicago researchers, men produce a hormone that causes them to develop muscle mass, which they need to perform masculine tasks that are biologically necessary for human survival, such as operating the remote control. The thing is, men produce this particular hormone ONLY DURING DEEP SLEEP.
If they don't get enough sleep, they become flabby.

In other words, men, the reason that you do not have the chiseled physique of a male underwear model is not that you have the same exercise habits as a cheese log; it's that you're not getting enough deep sleep! For your medical health, you must change your lifestyle immediately. I'm sure your spouse will be supportive.

YOUR SPOUSE:

Dear, could you take out the garbage, mow the lawn and help me move a 350-pound sofa around the living room until I finally decide that I like it best in its original location?

YOU: Gosh, honey, I sure wish I could! But I need to get some deep sleep so I can build muscle mass.

YOUR SPOUSE: Gee, I guess that is medically more important!

YOU: Thanks, honey! And by the way, those eyeball lines are very attractive!
I think there should be a TV exercise show called "Muscle Mass for Men." It would be similar to other exercise shows, except that instead of annoyingly perky women prancing around to annoying music, "Muscle Mass for Men" would consist of eight to 10 uninterrupted hours of a man sleeping in a Barcalounger. I can envision a nationwide chain of Men's Muscle Mass Fitness Centers, equipped with state-of-the-art beds. Fitness-conscious men could spend entire weekends at these centers, watching golf on TV and secreting vital hormones. (Anybody who thinks you can't watch golf and sleep at the same time has never watched golf.)

Okay, men! We've got you on a medically sound masculine fitness program, scientifically based on an actual newspaper clipping. Before you know it, your muscles are going to be so massive that you may have to move up to a larger potato-chip-bag size ("Small Village") to provide your new physique with adequate nutrition.

But even the manliest man can become sick or injured.

The question is: What should you do if you need medical treatment? The masculine answer is: Try to fix the problem yourself.

Real men know that many so-called "serious" health problems, such as a sucking chest wound, which the so-called "medical profession" will charge you an arm and a leg to correct, can be easily treated via simple home remedies such as duct tape.

For a good example of a man treating himself in a manly medical manner, let us consider a newspaper clipping sent in by alert reader Joel Prange from the Redding, Calif., Record Searchlight, concerning a man in Tehama County who had a painful corn on his toe. Now if this man had gone to see a doctor, who knows what he would have been charged? So, according to the article, which I am not making up, the man "decided to shoot it with his .22-caliber rifle."

And guess what? It worked out fine, except that he injured his foot and had to be taken to the hospital for treatment and may face legal charges.

This is why the American Medical Association states: "For foot problems, it's a lot easier to aim a pistol."

Although of course nobody is suggesting that you should attempt this without any preparation. First, you should sleep _______ I'm all for it. Zzzzzzz

That is beautiful. Thank you so much. Sometimes, it's hard to get beyond the
raw pain to where you just sent me. Thanks, Debbie
Debbie White
dwhite@...

Great to see you here again. Hope you are feeling better (and your dad,
too). Love, Debbie
Debbie White
dwhite@...

Since winter is upon us and people have expressed interest lately in
chatting we should set up some regular times where we can meet in the chat
rooms. Sundays seemed to be a good day before. Since we have some people
in the UK why don't we try an earlier time so they can join in. I'll
suggest Sundays at 3PM eastern time which would be 8PM I think in the UK.
We can add more chat times later as need be or people can just drop in the
chatroom at any time on the chance others will be there.
The preferred chat room from past experience seems to be the one where we
use all use Netscape Instant Messenger.
You can download the software from here if you don't already have it:
http://www.aol.com/aim/ Click on "Get it Now"
We have a chat room set up which you can access by going to my website:
http://home.inforamp.net/~pbower/msachat.htm
Click on "Join my chatroom" to enter.
See you there at 3PM Eastern time today.
Love,
Pam

OK Bill what did she just say? LOL! Welcome back Anne!
Love,
Pam

The best and most beautiful things in the world cannot be seen nor touched
but are felt in the heart. Helen Keller
You STILL haven't fixed your keyboard. Put a brick under it!! You must be
getting lop sided yourself, by now!
Course the card wouldn't go! Seeing as it's you yhat's upside down it would
be right side up when it got here, wouldn't it BILL!!
Hugs from Annie getting into the flow of things.

The best and most beautiful things in the world cannot be seen nor touched
but are felt in the heart. Helen Keller
Hi Sally
Has it really been so long that you have forgotten how to spell my name! :o)
ANNE!
Not much news happening here. Many pollies being caught for rorting!
Weather is stinking hot!! 35 deg today. Cowering in the air-conditioning.
Floods . (least this put the bush fires out!) droughts, cyclone over the
other side of Aussie. Other than that been so tied up will have to think
what is going on around our city!!
Much love Anne

The best and most beautiful things in the world cannot be seen nor touched
but are felt in the heart. Helen Keller
Hi Vera
Thanks a lot. You don't know how good it feels to me to be back amongst
friends. Missed you soooo much
Hugs Annie

Hi Nancy
I have ICQ chat too. Use for other students that study with me. Email if
you want my number Love Anne
The best and most beautiful things in the world cannot be seen nor touched
but are felt in the heart. Helen Keller

Thanks Nancy. Glad to be back. Love and hugs from Anne
The best and most beautiful things in the world cannot be seen nor touched
but are felt in the heart. Helen Keller

It's about time your back Annie. Nothing has changed here, as Fred
always said, same old soup, just warmed over. My computer keyboard is
still leaning, but what else is new. Tried to send you a card that
showed someone up side down, but for some reason it wouldn't go. Does
that mean your not up side down anymore? Try to tell that to Bill, he
wont believe that one. Anyway many hugs and talk to you soon.
Love Vera

Debbie:
I know that it is hard right now with your lost and being so close
to the holidays. I came across this poem, I wish I had wrote it, but
guess what I didn't. Anyway I wanted to put it in here for you and
the other here that have lost someone. I hope that it will help some.
We Remember Them
At the rising of the sun and at its going down,
At the blowing of the wind and in the chill of winter,
At the shining of the sun and in the warmth of summer,
At the rustling of the leaves and in the beauty of
autumn,
At the beginning of the year and at its end,
as long as we live, they too will live;
For they are now a part of us,
As we remember them.
When we are too weary and in need of strength,
When we are lost, and sick at heart,
When we have joy we crave to share,
When we have decisions that are difficult to make,
When we have achievements that are based on theirs,
As long as we live, they too shall live;
For they are now a part of us,
As we remember them.
They are always a part of us.
Remmber
Love Vera

Ann
" Love is kind and thoughtful
and love is understanding.
Love is warm and giving,
And never is demanding..
Love is sharing laughter
And sometimes sharing tears.
But mostly love is all the joy
You've brought each other
through the years."
Thank You for putting the pictures in, they are really very nice.
You make a beautiful Bride.
Love Vera

Sheila:
My sister in law sent this same poem to me a few months back. It's
just as nice the second time around.
Thank You
Vera

Boy!!! you don't know good it is to have you back.
You've been missied THIS MUCH ,really.
{{{{hugs}}}}}
Vera

Hi All

Well after my long absence I am back. I have missed you all so much my friends. Thanks so much to all of you that have written to me privately and encouraged me and given me support when I was very, very down. I so appreciated it. Still rather down but am now making a bigger effort to stop wallowing in it!!

Hi too to all the new folks that don't yet know me.

I will get a chance to meet you all now. My communications will be slow to start. There is still a lot going on here. My Dad is still very, very ill. He does seem to pick up a little but then goes down with a bang again. He has so many medical ailments now, that the doctors are amazed that he is still with us. He is now though very weak and we just don't know how long he can continue fighting. His dementia is severe. Rarely knows us now, which of course hurts a lot.

Haven't been the best myself either, then of course so much stress doesn't help. One bit of news for those that know about my eating problem. I have as you know taken it for granted that it was the SDS causing it. WRONG!! I went back to my vascular surgeon for a check up. I have been re-miss at doing this not seeing him for about 3 years. Thought the bypasses were all fine and just went to have this confirmed. Unfortunately this didn't happen. It was found that the bypass to my stomach is blocked with scar tissue! Must have been blocking gradually as my ability to eat got less and less. The only reason I can eat a tiny amount of food is because it has bypassed itself via two very small routes. Not enough though to eat properly. I go on the 19 Dec when surgeon gets back from a convention he is presently attending to find out what he intends to do about it.

Well anyway enough of the down stuff! I am so glad to be back with you all. Looking forward to chatting with you all again.

Are you reading this Bill? Anne's back, upside down and all!! :o) So watch out!:o)

Love to all from Anne

The best and most beautiful things in the world cannot be seen nor touched but are felt in the heart. Helen Keller

Thanks. And I can tell that this will take a lifetime. I just wish that she
hadn't left me with so much lifetime without her. Debbie
Debbie White
dwhite@...

Trevada
It is not uncommon. MSA patients tend to have very dry eyes and it
takes very little to irritate them. Ann used to get ulcers on her eyes
due to the dryness.
Elmer used to have trouble when he was using a bronchial dilator in a
saline mist because it would float up and irritate his eyes. The nurses
couldn't understand what was going on so I had to show them how the mist
floated up to his eyes when using the face mask type of inhaler for his
treatments. They thought it was the craziest thing in the world until
they stopped using it and his eyes cleared up.
Sally

Karen
I just read your kids joke. Thank you! I needed that today!!
Sally

Aida
Glad you 2 are doing ok up there in the cold country. Have a wonderful
holiday season.
Sally

Debbie
Recognizing your mother's wonderful habits and traits and her
exceptional zest for life indeed shows you too have many of the same
characteristics working within you. It is not uncommon for some
children to never know or see the wonderful human side of their parents.
Grieving the loss of a loved one takes a lifetime. Don't rush.
Sally

Vera, I hope that I have some of my mom's values. I really don't know how
she stayed so involved in everyone's life. So often I am so late in
recognizing events that are noteworthy in people's lives. And my mother in
her bed in rehab ordered a birthday cake for her roommate's son (who was
around 35) because she could see he wasn't getting one any other way. Man, I
never could have pulled that off. I am way too distracted by things. But I
will try to do better. Debbie
Debbie White
dwhite@...

Mary, Thanks for your kind words. I will have peace one day about my mom,
but I think it will take a long, long time. I have a lifetime to deal with
this and I am not rushing anything, Debbie
Debbie White
dwhite@...

Pam,
This is the work I keep talking about and has a VERY important paragraph
(everyone should read the whole thing to get a clearer picture of the
research). But this paragraph describes why this is not a fetus (foetus :o).
"So if we had early human embryos and it was possible, as in the mouse,
to isolate and grow their pluripotent stem cells and make
them into particular cell
types, eg. nerve cells, we know from foetal material experience that cell
transplantation can be successful. However the need for human embryos is
where all the controversy lies. Yet there are surplus embryos from in vitro
fertilisation procedures. The crucial point the general public and most
politicians do not understand is that the very early embryo (the blastocyst) is
not like a baby. It is just a ball of about a hundred cells generated in the
laboratory; it has no future, no possibility of developing any further, unless
transferred back into a woman. In culture in a laboratory it looks nothing like
a foetus. It has none of the recognizable features or properties of a human
being. Stem cells can make other cells but they cannot make an embryo. And
the far-distant prospect of growing body parts is not what this is about."
This is not about growing body parts or anything like that. This is growing a
specific type of cell. A drop of blood is thousands of cells and many different
types of cells. A fetus is millions of cells and thousands of different types
of cells. As he explains, the blastocyst cannot become a fetus unless it gets
placed into a womb, attaches to the womb, and the outer cells form a placenta.
ONLY then can it even begin to get the life giving chemicals it needs from the
mother. The placenta cells are the only ones discarded in the research, the
pluripotent cells are all used to save lives. If it is okay morally to
transfuse blood (many cells) or transplant a heart (or other organ) which is
millions of cells, why is it not morally right to transplant cells which can
never become a fetus?
The second article that Pam put up shows that there is legitimate disagreement
among Christians as to whether stem cell research is "moral". The Church of
England says it is right and the Roman Catholic Church says it is wrong. But
there is also disagreement among Catholics, as many priests (especially ones
involved in science or medicine) think it is right. I know many scientists that
are also Christians and believe that there is no human life until the actual
fetus forms at about 5 weeks. But I do not know of ANY who believe that the
blastocyst is human before it actually attaches to the wall of the womb and
starts getting nourishment (programming chemicals) from the mother.
Look at the organizations that support this research in England and the USA.
Then tell me that Bush has the right under the U.S. Constitution (which mandates
separation of church and state) to ban this research on his own religious
beliefs. Why are members of his own party like Arlen Spector against this ban.
This should NOT be a political debate in the USA. Maybe it is time for national
referendums on matter's like this. Remember even if Bush wins the election, it
is clear that Gore got more votes. Is it the "will of the people" to ban stem
cell research? If Bush is truly interested in being a good President, he should
consider that point carefully. Truman dropped the A-bombs to save lives, even
though he was a Christian. In comparison to the loss of life by two A-bombs,
how does the loss of cells due to be destroyed in any case compare? Millions of
people were killed during World War II - WHY? Was it for the ultimate good of
all people? Was it God's will?
If you want to consider "morality" you must consider all human life equally.
There is a great deal of evidence that a blastocyst is not yet human life as it
still needs a woman to contribute to making it human life. Is a person who dies
in a war less a human? Is a criminal we put to death less human than these
cells? Charlotte and I feel people have to die in wars and that criminals
should be put to death if they are truly guitly of murder, but we also feel
pluipotent stem cells should be used to save lives rather than be destroyed in
the name of questionable morality.
Take care, Bill and Charlotte

Dear Meg,
You are a wonderful, understanding daughter and anyone would be proud to
have you. Thank you for standing by your family (Dad) I know he knows it
and loves whatever you do for him.
Mary

how lovely ... thx for sharing ...
looking good to me ;-]
sheila

Beautiful!!!!!!!!Thanks for sharing
Barb in Texas

John
At least we know your sense of humor is still intact.
Sally

Nancy,
Glad you found that, it verifies what I've been saying all along.
Separate high protein meals from Sinemet BUT get enough protein (helps prevent
bedsores)
Don't take mega doses of vitamins
Take care, Bill and Charlotte

Pam:
yes, it shows up.
Barbara Smith

Does the message at the bottom of every email not show up to people on AOL?
Just wondering.
Love,
Pam

Sent: Saturday, December 09, 2000 10:46 AM
Subject: I pick you...

anne glad to see u back:)
nancy m.

I have ICQ too if u ever want to chat or try the egroups on the shy
drager site.
email me if u want my icq number.
nancy m.
mailto:ds401@...

I watched my mother make quilts, the Dresden plate pattern, during the
30's==all by hand and out of leftover materials, and then I have made
quilts too all by hand, from scrap material--took 3 months of quilting with
that giant stand in the middle of the living room--the kids loved to play
beneath it. And the local Methodist church would quilt by hand an entire
quilt for $100==what a bargain, and those old ladies really could quilt.
It was fun. Techniques are so different these days. At 01:30 AM 12/9/00

http://spring.parkinsons.org.uk/spdiet.htm
FOUND THIS. RELATES SINEMET TO DIET ---PROTEIN AMOUNTS AND VITAMINS SIZE
OF MEALS.
NANCY M.

welcome woody!
What made the docs change their mind after 7 years? How are u and ur
family coping with the illness?
nancy m.

my name is woody i am from the uk cleveland in the north east i have
had m.s.a for about two years having beentold i had pd for the
previus 7 years i am 42 and doing reasenable at the moment.
i have been reading the list for a year so thanks to you all for the
help i got reading your aboutyour own m.s.a problems

Morgana,
Is your mom's bloating all over or just the stomach area? If it is just the
stomach area, have them check the feeding tube as sometimes they come loose or
even slip out part way and drain into the stomach cavity rather than the stomach
itself, which can be a real problem. If the bloating is only in the stomach
area, have it checked out by a doctor for placement of the tube. If it's all
over, you may want to check her meds.
Take care, Bill and Charlotte

Come on over I will wait for you in the chat room
http://home.inforamp.net/~pbower/msachat.htm
Or if you have Instant Messenger we can do that. Barb

Hi Do you have the MSA Chat room site. or the Instant messenger. I am
mama1330 Barb in Texas.

Ann:
Friends are one of life's greatest treasures and I thank God for
everyone of them.
Always
Vera

Hi all;
Do you guys ever use the chat exchange. So we don't have to wait
until the next day or two to get a response???
Just wondering...kinda wanted to talk to someone tonight. Not really
Shy-Drager stuff, just some other stuff. Nothing important.
Regards from Mary Ann

Judy,
I'm SO glad to hear that Mark is doing better. You guys have been on
my mind, and I relieved that finally there is some good news. I'm
sure you'll be glad to have him home, and having some help during the
adjustment is a good idea.
This is a wonderful early Christmas present!
Carol& Rob

Vera, Yes I have been doubly blessed by God. I have this wonderful new family
here on the forum. And I do really feel blessed that I found all of you.
Everyone is a fountain of information and everyone has a heart that is so full
of love and caring. Thank you one and all. I do know how lucky I am to have
sisters, brothers, and children lie mine that care and love so
unconditionally. I worked for years as a counselor for women and children in a
battered women's shelter. I have seen first hand what some families are like
out there i thank God everyday in my prayers or at Mass for my greatest gift
of all here on earth, my family.
FVJAMES@... wrote:
Meg :
Your so lucky to have family that wants to be part of your life, no
matter what it takes to help. Not all of us are so lucky.I can see by
that love and support it has helped to make you who you are today.
You are double bless by God, you have two familys to help support
you, your own and the forum here.That has to be a nice feeling.
Always Vera
To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com

We are all thinking of you and Mark. It sounds like he has made a lot of
progress.
I would encourage you to keep as much help as possible for as long as
possible. Everyone needs a break sometime during every day. Love is
wonderful, but it can also be tiring. I do hope that Mark and you will do
well. Based upon my own husband's needs, Mark should love the opportunity
to get out of the house some, as well.
My thoughts and prayers are with you.
Marilyn in TN

Thanks for that, loved it .
Ann from Soddy,TN

Hello All,
I finally have good news about Mark. He is still in ICU but doing better and
should be able to come home on Tuesday if he continues to do OK. Of course,
he will be coming home with the feeding tube, suction machine, and
ventilator. He will be on the vent at night only, on the feeding tube 24
hours a day for the first two weeks then after another swallowing test he
might be able to start pureed foods. At that time he will only be on the
feeding tube at night.
Sounds like a lot of new things for me to learn but I don't even care. I
will just be happy to have him back home. So will the poodles! Mark's
brother and I are moving beds tomorrow morning and putting Mark in the
biggest bedroom to accommodate all of his new STUFF. Mark's doctor wants me
to continue with Mark like I always have, take him rides, get him out as
often as possible, and just keep him happy. I think I can do that!
I'm sure I'll have several questions after Mark gets home about tube feedings
and suction machines, etc. We will have home health care for a while until I
decide I can do everything on my own (or not)!!
Take Care,
Judy

Meg :
Your so lucky to have family that wants to be part of your life, no
matter what it takes to help. Not all of us are so lucky.I can see by
that love and support it has helped to make you who you are today.
You are double bless by God, you have two familys to help support
you, your own and the forum here.That has to be a nice feeling.
Always Vera

Good to hear from you Harriet, deep down I think we're all depressed so
don't feel that your alone, some of us are just better at covering it up :-)
I think of you often.
Take care
Fordy's Michelle in Oz

I too am hoping for more research and possible cure for this dread
disease.
Don't give up.
Lots of things have happened on both sides that have meant more than we
could have imagined years ago. Ralph was not a good candidate for any
of the treatments that are available now or even when he was dx. But
there may be others who will be. I dearly hope so.
I do not want anyone to go through what Ralph and I did. We were at the
end of the rope when we started five years ago. But we managed to get
through them to the end, with the Lord's help and the encouragement of
this group.
I will continue to be interested in what is going on.And I will continue
to try to encourage. Life can be good in spite of what is happening to
all of us.
Love to you.
Barb

Marilyn and Vera,
Thanks for the words of encouragment, but it is not courage that brought me
back home to my father's house to care for him. It was the love for family
that my parents taught me as a child. They taught me that family is always
there for each other no matter what. And guess what? In this family they were
so right. I am the 5th child of 9 children. I have four of my own and everyone
one of them would give an arm and a leg for each other. I am not here alone.
Even though my siblings and children are scattered throughout the country they
are always here with me with words of comfort and advise. I never feel alone
and my mother's spirit is very present in my days. I am very fortunate to have
blessed with such a marvelous group of people. They are strong and like they
have told me Dad doesn't have parkinson's and I don't have Shy-Drager, we all
do and we all will give it all we've got. Besides it is written in the bible
to care for our loved ones when the time comes. They cared for me when I
needed them. My parents were there when I was sick or hurt for 46 years and by
golly I will be there for my father when he needs me the most. Thanks for the
encouragement once agan but like I said it is not courage but love that keeps
me here with Dad.
"Charles and Marilyn Morris" <morriscm@...
Meg, I admire your courage. It is difficult to give up the life you are
comfortable with and move to another state to care for a parent. I don't
care how much you love them and want to help, it takes courage to do so.
Your parents must be so proud of you!!! My thoughts and prayers will be with
you daily.
Marilyn in TN

Sorry,
This is the second time around on this list for this "joke", the old date was
not even removed from the email (Message 1314). On the marijuana, at least
Clinton did not lie about it. Mr. Bush will not say what he did as it is "none
of our business". He will also not tell us about a drunk driving episode (I
personally feel there is no difference between drunk driving and marijuana
impaired driving, both are attempted murder). I hear comments about Gore
"stealing votes" here, but in truth the only ballots that have been found to be
illegal have been for Bush and were thrown out immediately by election officials
as they should be, just as any illegal votes for Gore should be thrown out. The
Constitution states over and over "the will of the people" and that is what
should guide all of this, rather than personalities.
Maybe you can tell me why Mr. Bush is not condemned for this type of behavior
and Mr. Gore is condemned for Mr. Clinton's behavior? I really do not
understand the hate for Mr. Gore. I do understand that Mr. Bush has said he
will BAN research that MAY help MSA and probably will cure or at least help
Parkinson's. If this is a Bush-Gore debate on MSA issues when let's discuss
issues not personalities. If we want to discuss issues other than MSA issues, I
will be glad to put hundreds of pages from the Austin Chronicle, Dallas Morning
News, Daily Texan, Texas Observer, Corpus Cristi Caller Times, Houston Chronicle
and other newspapers about the conditions in Texas under Bush and who has
benefited.
The election is over. Bush has about a 97% chance of winning. I am the first
to admit I am unhappy because he will ban research which has shown great promise
as a possible cure for Parkinson's, and which could lead to new info on MSA. Is
there debate about this? This is the area that concerns MSA patients. If the
USA elected a Jehovah's Witness or Christian Scientist would they be able to ban
blood transfusions? Am I selfish in wanting a cure for MSA - YES! There is a
possiblity that this could be a new thing and that my kid or grandkids could get
it. I want every chance of a cure for MSA! A debate here on MSA issues is a
real concern for a MSA support group.
I'm sorry that I am so uptight about this issue, but we have a Senator-elect
here, who would vote to ban the book Darwin's Theory of Evolution. Nazi Germany
burned books that disagreed with Hitler's Mien Kamph and used "Christianity" as
a tool. If a Christian preacher disagreed with his brand of Christianity - he
was put to death. The First Amendment to the Constitution states CLEARLY that
freedom of speech is a right. It bother's me that a Senator will make
statements about violating the Constitution. There are also statements in the
Constitution on separation of church and state, yet Bush banning stem cell
research (with my tax dollars) will be on his own personal belief with no regard
for my personal beliefs.
We have important votes coming up on Medicare cuts and funding, are you all
watching? Do you know the issues? Some want government out of Medicare. Did
you know that Blue Cross/Blue Shield (the biggest private insurer in the USA) is
going to limit paying for the acid reflux medicines to 90 pills per year in
2001???? Do you want pharmacists telling you how many pills you can have? Or
do you want doctor's telling you? This is an important issue to MSA patients.
What if an insurance company decides that Sinemet is costing too much, and
limits it?
Personalities have NOTHING to do with this group. I think that Gore has all the
personality of a toad. I will keep supporting pluripotent stem cell research as
I feel that it shows the greatest hope at this time of a cure for Parkinson's
and Parkinson's Plus disorders. I have studied medical research in this area
for 10 years now, and have never seen anything that showed as much promise.
Charlotte and I talked about fetal tissue transplant in 1991 and decided against
it even then, but this shows much greater promise and will not cause abortions
or even destruction of human cells. All of the cells that could become human
will be used for cures. This could be our day of reckoning.
Take care, Bill and Charlotte

I am glad that you are able and willing to provide support for your parents. They need your help and support, what ever it takes. My feelings come from the parent who was always in control and now my husband is very ill and I have some health problems myself. Things that never bothered me before now leave me very restless. It is sometimes difficult to make decisions that I never had trouble with before. Our sons and their families have been great. Your parents need your love, kindness and support. As a parent, speaking for your parents, thank you for doing so.
Marilyn in TN.

Ok, well maybe it's not on your are, but it is somewhere, still would
like to know how I missed it, or maybe you just didn't let us know.
I am waiting to hear how you are doing.
Hugs Vera

Jennifer, Godspeed. I am remembering you and your family in my
prayers. Maybe if I ever get this stupid cast off, we can meet.
Love,
Donna Waggoner

take my dad to see Dr. Jankovic at Baylor in Houston, TX. I will let
everyone know what he says. As far as I know, Dr. J is one of the best
around; I hope so. My dad has progressed so far that I do not think
that there is much that Dr. J can do, but he might be able to help
others by what he sees. We will also be able to regulate his meds,
finally.

Bill:
Target put it in the local papers also, but I didn't see it. If my
daughter in law didn't work for target and tell me about it, I
wouldn't of known about it either.
That's the one thing I hate about all the rush at Christmas the
stores are so hard to get around in, that's why I do it early or hit
the stores around here that are open 24 hrs. We do have a few. The
Wal Mart for one.
Happy Shopping
Vera

[INLINE]

Friday, Dec. 8, 2000

A White Christmas in San Juan??

QUEBEC CITY (Reuters) - In the realm of the bizarre, 295
tons of Canadian snow are being shipped this week to the
Caribbean island of Puerto Rico to let children build snowmen
at the capital city of San Juan's annual Christmas party.

Local organizer Luis Guzman told Reuters he was excited
about bringing the white gold from northern Quebec to his
island of four million people, where temperatures are currently
around 90 degrees.

"The children here don't have the opportunity to play with
real snow like in Canada," said Guzman, the head of Family
Events, the San Juan entertainment firm that had the idea.

"The children will be able to make their first snowman
ever," he added, explaining he would throw a party from Dec. 15
to Jan. 7 in a refrigerated warehouse near the San Juan port.

More than 300,000 children are expected to show up.

New features will be coming soon to our online group.

Vera,
The only help I need in the store is less people. It's difficult to get around
with the wheelchair, because people will not move and let you go by. Target
should advertise that more in advance, since I don't look at their brochure
every week.
Take care, Bill and Charlotte
====================================

Well, I will soon be traveling to my parent's house in Louisiana to take my dad to see Dr. Jankovic at Baylor in Houston, TX. I will let everyone know what he says. As far as I know, Dr. J is one of the best around; I hope so. My dad has progressed so far that I do not think that there is much that Dr. J can do, but he might be able to help others by what he sees. We will also be able to regulate his meds, finally.

My mother was able to get the appointment and my husband still has vacation days left. A family friend will be watching the boys (3.5 and 1.5 yrs) so that they do not have to make the trip (thank God!).

Jennifer Worth in Dallas TX

Bill:
Sorry it was only the one day that Target does this, but they do it
every year. From what I understand it is all of them that do this. I
talked to someone that works at another target and they also had it.
They told me that some of the other customer's weren't happy about
them closing the doors to them and only letting the elderly and
disable in, but I told them that I was every please that they were
doing this. I also talked to someone at Wal mart and they will send
one of their staff around with you to help you shop if you have a
disable person with you and can use the help.
Take Care
Vera

wonderful ... thx for the chuckle
cheers
sheila

Mary,
Be careful with, How much laxative you give. Some have a tendency to keep
increasing the dose to maintain the same results.
The colon has the ability to adjust to any of the laxatives and or fiber.
You have to keep increasing the dose to achieve movement and one winds up
with an impacation.
Be careful with the enemas, if he has a spastic colon or diverticulitis. I
have those maladies and people who have to strain to get a bowl moment
usually have them.
Am enema I gave myself went on quickly which I thought was odd. A two days
later I was in the ER and rushed to the OR in critical condition. The reason
the liquid went in so easily was that one of my Diviticula had ruptured and
spilled all of the contents into my abdominal cavity. BE CAREFUL WITH
ENEMAS!
God Bless,
Jim Stark

Fw: Ho Ho Ho
Hello out there all people of the world.
This is Santa and I just wanted to let you know that Christmas may be a
little late this year.
See after checking all the boxes and tallying them up, I found some problems
with the results.
The first result showed:
428,534,120 Good
428,523,119 Bad
The second result showed:
428,534,118 Good
428,523,121 Bad
So you see, I can't, with good faith, go out and deliver presents while
knowing I could have made a mistake. Maybe Little Johnny was good for once,
then again, maybe not.
So, I have enlisted the help of all my elves and the Mrs. To help do a
recount. We hope to have this finished up by 5pm
on the 24th of December, but there is a possibility that it might take
longer. You see the tally cards were not quite clear
to me, although I made them my-self, I forgot what they meant.
You know, Good...and Bad??? And the check marks I used were not all the
same, some went left, some right, some were
just a mark. some went through both boxes, and some didn't even have much
of a mark on them. I leave it up to them to
decide what I meant.
So if you wake up on Christmas morning, and there are no presents under your
tree, at least you can tell the kids the story.
Thank you for your patience and understanding in these times,
Santa

Oh I am thankful she was not color blind.

Just a small thing and small blessing. Barb [INLINE]

Maybe for the first time in his life he was speechless.

I love these little bits of history of our fabulous country and the folks who have gone on ahead of us.

I hope we are remembered as fondly.

Barb [INLINE] Hugs to all who are reading this. No secrets here,

Dear Dawn,
Bill's constipation was so severe that he became impacted several
times, which can be very serious. Over the years, we used magnesium
citrate, milk of magnesia, stool softeners, stool softeners with
laxative, dulcolax, enemas, suppositories and "finger jobs"! We were
ready to try dynamite next.
On this list someone mentioned Miralax and I asked the doctor about
it. He had never prescribed it but was willing to have us try it.
It is appropriately named. Bill's stools, although not daily, when
he has them they are soft and easily passed. He is now quite
comfortable and I am so thankful for this information.
It is a powder that dissolves readily in water and is almost
tasteless, which is so much better than milk of magnesia. It is
taken every day.
Hope this helps.
Marie Fox

Barb,
I remember a seamstress important to our freedom - Betsy Ross.
But does anyone remember this?
FAST FACTS:
Bullets or ballots?
In 1912 former president Teddy Roosevelt, a Republican,
decided he wanted one more crack at the White House. Denied
his party's nomination, Teddy ran as the candidate of a
progressive party built just for him: the "Bull Moose" party.
One disgruntled citizen, angry that Roosevelt dared to seek a
third term, walked up to the candidate at his speaking
engagement in Milwaukee and shot him in the chest.
Fortunately Teddy's thick speech, stuffed in his pocket, took
the brunt of the shot, although the bullet did enter
Roosevelt's body. The wounded candidate insisted on speaking
and supposedly began by saying that he didn't give "a rap"
about being shot.
Now I ask you, do you believe that's the word he really used?
Take care, Bill and Charlotte

http://search.netscape.com/search.tmpl?cp=srpnext10&search=free+clip+art&jstart=11
http://www.mediabuilder.com/index.html

Hi. A couple of sites for you.

You can also right click any thing you want to keep in a file of your own from just about any site you come upon. They will be sent to a file of your choice.

Bill has some other sites but i cannot not seem to find the ones he sent earlier.

Have fun.

Granny Barb in Texas where the sun has been warm all day but the breeze is still cold.

[INLINE]

Others have given you some good ideas; here are others:
Managing Bowel Dysfunction
Someone also mentioned licorice helps loosen bowels and has the added
benefit of raising blood pressure (which most need here)
AND PRESCRIPTION:
Rose

Hello everyone.

I hate to show my computer ignorance, but where does on get these moving icons that some place on their mail.

God Bless,

http://www.ataxia.org.uk/about/

Look under the titles "FATIGUE IN CNS DISORDERS" and "CHRONIC
FATIGUE SYNDROME: ACQUIRED NEUROLOGICAL CHANNELOPATHY" about halfway
down the page.
http://www.cfs.inform.dk/Nyheder.udland/fatiguelondon.txt

Actually I just found another site which links directly to those two
articles:
http://www.ncf-net.org/conferences/2000.htm#chaudhuri
http://www.ncf-net.org/conferences/2000.htm#behan2

http://www.coles.org.uk/about.htm

This disorder has alot in common with MSA. Interesting site.
http://www.TORNADODESIGN.COM/cbgd/

Hello,
I received a copy of your email to Pam Bower and want to offer to help
somewhat. My wife owns Exxon-Mobil Stock and worked for Exxon for 12 years
before getting MSA (Shy-Drager). If you send me some literature, my wife and I
will forward it to Exxon-Mobil with a shareholder letter. There may be others
who work for companies that do matching contributions, so I am also sending this
to our mailing list in hopes they will ask their companies to match any donation
they give.
Let us know when you have the info on your website, or send us a copy.
Raymond Werre
1308 Dulles Place
Herndon, VA 20170-3818
bwerre@... through 3/1/01

Even if you only have a few people, have some meetings and advertise. Most
newspapers will put your notices in free (even the Washington Post). Local
newspapers are even better. You may need a lot of notice, like two weeks. Your
neuro may be willing to put a notice in his/her office also.
Take care Bill and Charlotte (after a year of 2-3 people, we had 6 at our last
meeting).

Vera,
Is this all Target's or just your Target. Was it a particular day? I might
take Charlotte.
Take care, Bill and Charlotte
===============================================

Hi, this is Harriet from Hawaii and I want to thank each and every
one of you in this wonderful family for all of the information you
provide. I don't write much, as I'm still computer impaired and my
coordination doesn't allow me to stay on the computer longer than 30
minutes, otherwise my typing gets to be almost as illegible as my
handwriting, but I try to read EVERYTHING written and I've cried,
laughed and learned so much from all you have contributed......I get
very depressed because I've had to depend on others A LOT, and I've
even vented several times here but mostly try to learn from what is
said here. I wish I could be as positive as you all seem to be and I
want to wish each of you a very BLESSED Holiday Season and again
thank you for allowing me to know that you're always there for
me......HUGS AND PRAYERS Harriet Bise

Hi Becky,
It's always nice to hear from you. I hope you have a wonderful
Christmas with your family. Will they all be home? I'm hoping to
encourage my husband's family to give up on the gifts next year too...
for this year I told the sister-in-law who drew my name to donate
to MSA/SDS or ataxia instead.
Becky you were involved for so long and I remember you'd write to
every person who came on the list. Please don't feel bad now that you
haven't the time to do that anymore. There are other ways to help as
you've already discovered with your donations to research.
Love,
Pam

We would like to remind you of this upcoming event.
Southern Indiana Support Group
Date: Sunday, December 10, 2000
Time: 3:00PM EST (GMT-05:00)
December 10th
3 PM
Cook Memorial Methodist Church
2915 South Walford Drive
Jeffersonville, Indiana
(Louisville, Kentucky area)
RSVP to Harriet Gossman if you plan to attend
Harriettlpn2@...

I wrote this note several months ago and have just gotten a reply.
Perhaps there is a way more people can get involved.
Hugs,
Pam

Hi Vera,
Surely you aren't the only ones in L.A. Perhaps you'll need to
advertise a bit to reach new people. I just heard from Harriet Gossman
and she has 9 people coming to her first meeting on Sunday just outside
of Louisville, KY. She's quite excited as you can imagine. Gary
Huddleston also has had some interest for a meeting in Indianapolis.
Hugs,
Pam

Meg:
I wonder at times why God does what he does, but he always has a
plan. They say that he doesn't give us anymore then we can handle and
by this you are one of the strongest woman I have seen in many a
year. To have helped your father and now to have to go through it
yourself. Boy! what strengh you must have. I'm so glad you are here
with us.
Many , many HUgs
Vera

Pam:
I just wanted you to know that I e mail Diane Maxwell about getting
together for some kind of support group. I know that I would like to
and I think that Fred may want to. Diane e mail me back and gave me
her number, she said I'd been the only one that had e mailed her. I
told her that I would be getting a hold of her soon and that maybe we
can get together after the holiday. If there is anyone else out there
that would also like together in the Los Angeles area, please speak
up.
Always Vera

Suzanne
Glad to see you feel the same way. This is home.
Hugs
Vera

Dawn:
Constipation is the big problem with Fred and we have tried about
everything. They will work for awhile and then stop. I tried Swiss
Kriss for Fred and it worked for a few times, but then like the other
things I've tried for him it stopped. Charmayne told me about
Nulytely your have to get RX for, but I haven't tried that, so you
may want to ask her doctor about that, The Swiss kriss you can buy at
Savon or health store. It may work for her, It has helped other here
on the forum. I hope that you fine an answer to this problem for her.
Always
VEra