Wiki articles

seems right on the money here.
john, who had always loved to get together
w/family and do social things and loved
church and especially loved our little
nieces and nephews running around....all
of a sudden this became too much. of course,
we both (me especially) did not recognize this
as a 'symptom' at the time, and it was the
basis for many disagreements - - or should i
say (admit) that it was more ME getting ticked
off at his attitude. he couldn't stand noise
and commotion and fuss. he withdrew. he
became indifferent. he became angry. whatever
emotion he displayed, did not sit well with me
and i am only too sorry now that i didn't
see it for what it was. but who knew? i have
found out more in the past 18 months (7 of which
john is no longer with us) than any number of
doctors could have told us or prepared us for.
fondly,
kaye

This is really sad. I have been reading all the chats on NPF Forum and the
NPF Ask the Doctor. They had been really counting on this.
Tricia Jensen
pajensen@...

most of what you gather appears to be correct. altho, from the experience at my
house, my husband was diagnosed with OPCA at age 40 (presented symptoms a few
years earlier) and passed away due to complications from MSA at age 48.
therefore, he presented prior to age 51 and progressed to MSA. how i wish it
wasn't so. :(
kaye

Well, I don't quite understand all of that, but as doctors were telling me I
had Parkinson's Disease, and then telling me I did not have Parkinson's
Disease because I was progressing different. Well, with Parkinson's People
eventually getting autonomic problems eventually, what keeps them from being
lumped into MSA with us.?
Tricia Jensen
pajensen@...

Debbie, the biggest hole i ever dug was the one I put my golden in .it
was a very deep hole. i dug as though my life dpended on it becky

If you do ever get to TN, we'll have several interesting places for you to
see. I am sure that every state is unique, but we certainly think so about
TN.
Best wishes,
Marilyn

Jerry,
My comments may sound off the wall, but maybe they will give you some words
of encouragement.
We are the parents of three adult sons who now have 5 children among them.
We are also concerned about what we may have passed on, but we must look at
the future.
Several years ago when our first son was born was just about the time that
the wall went up in Berlin. I can remember being so very depressed about
that siuation and the fact that I had brought a child into this world to
face all of the problems that wall might bring. I actually sat and cried,
for how long I do not remember. I do remember feelings of great dispair.
Now, we have lived through that and the Berlin wall is down. Of course with
boys in our home, we have lived through exciting and sad times. Now we are
enjoying beautiful grandchildren.
My husband's father died in an accident at 56. His father died at 32 from
the flu/heart attack when is son was only three weeks old. My husband has
out lived both of them as he is almost 69 years old. I realize that we can
not ask my husband's fathers who are gone, but I sometimes wonder (even
knowing that my husband has been ill for 10-15 years), if they would have
liked the chance to live longer even if they had been ill.
I guess, my point is, if I have one, is to try to live for today. We can
not rule out all problems. Once they find a cause/cure for MSA in whatever
form, there will be some other major problem that will effect many.
I'm not any better than you in trying to work through this stuff. I am
worried about my sons, especially. I get those crying jags also, when I
think that I just can not do another thing today to help my husband.
Your brother must be very proud of you that you are by his side and helping
with entertainment as well as the work. He is a lucky fellow to have you.
Marilyn in TN

Hi everyone: my husband applied to the VA to see what they have to offer
as far as aides, home health care, nursing homes, etc. Is anyone
receiving care from them & how long did it take to be approved? Thanks
for replying. Regards, jerrie

My two boys (15 and 9) are a real joy to be. We are planning a trip to
Florida this summer. Going by motorhome, which is easier for me. We will
be attending a family reunion in Alabama on the way. I am really looking
forward to it. My older son goes to highschool at the Army and Navy Academy
which is two hours away from here near Oceanside. Out of all the private
schools we had applied to, that was the one he wanted. He wants to get a
referal to Annapolis so he can be a Navy Flier (Test Pilot). I miss him so
much during the week, but he does get to come home on weekends. My 9 year
old is home with us. He is our clown. He is always making someone laugh.
I love them both very much.
It just hurts me that now I can see the pain in their eyes when they look at
me and they have noticed that their is one more twitch or jerk where there
used to be none. They are starting to notice that things are wrong with me.
It won't be too long before we have to start being more honest with them.
Up till now we have just said things like myoclonic jerks (but nothing to
worry abut), or just finger jerks, or just tremors, but now they are
noticing that I am having trouble swallowing and such. They are very smart
and very observant.
Tricia Jensen
pajensen@...

Thank you Vera.
Is there a support group around here that anybody goes to see each other
talk and have coffee or such?
Tricia Jensen
pajensen@...
. We are just outside of L.A like I said. If you

Pam,
Last time today I promise. You're very perceptive.
Yes I have two very urgent needs to know about this
disease.
First (and most significantly) my brother and I have
a very close relationship. We are separated by 1 year
in age (he's older) and we've always been referred
to as "Larry & Jerry" as if we were twins and we've
always had a closeness in our relationship that is
similar twins. He was always my hero and he rescued
me from a lot "dangers" in my earlier years. I am
simply devastated by his illness. I was with him
when he got his diagnosis and we cried on each
other's shoulders when we got to the parking lot
after the doctor's visit. I plan to be and do all
that I can for him and his wife as we deal with his
illness. For now, I am doing his home repairs and
keeping him active (we just went to a hockey game
and we're making plans to go to a Nascar race in May).
Secondly, I have two wonderful children (a son and a
daughter) both just graduated from college with exciting
careers and one married and one getting married
in May. Both are of course planning to have children.
I have decided in my own mind that I can and will deal
with my own risk (if any) for acquiring the disorder,
but as anyone who is a parent will understand, I
shudder at the possiblity that I pass this risk on to
my children or their children. I absolutely do not
want to have them live their lives in the shadow
of the risk -- which of course is not within my power
to control.
So, for both of these reasons, I am trying to understand
and come to grips with whatever form of ataxia our family is
confronting. Would I wish that Larry's diagnosis of MSA
is correct (and therefore sentence him to a more progressive
form of the disorder) just so that the hereditary aspect
would not be a concern to me or my children? Absolutley not.
I am always looking for and eager to see any indication
in the materials on this list or the ataxia sites that
suggest he might have one of the slowly progressive ataxias
that would hold out more promise for a slower progression
of his symptoms. I also refuse (even though we got some
disappointing news on stem research today) to give up on
the hope there will a treatment in the near future.
I put that in my prayers every night.
Thanks for listening.
Jerry

Sally:
It sound as if you need the same thing I do, Shorter days and longer
nights. Geez isn't that what winter is for? To catch up on sleep?
Somehow it isn't working. If your feeling anything like me ,you need
a good rest.You've always had your handfull and it looks like you
still do. Always one thing after another and here I am asking you
questions, but Thank you for taken the time to tell me about the
desmopressin. I had wonder how it had worked.
Are you getting any time for yourself? I think we're going out today
to the show and dinner. Well at least that is the plan, but those
don't always work. If you know what I mean. (I'm sure you do)
Hugs Vera

Hi Jerry,
Here we go... this is the abstract on the 1998 consensus statement. There
was a website which showed a table of possible symptoms in each of the 4
clinical domains but that is temporarily not available. I was told several
months ago that it was being updated. It was located here so you might want
to check back here occasionally to see whether it's been updated or not.
http://emedicine.com/NEURO/topic229.htm
I also recall I wrote to one of Dr. Gilman's colleagues and he explained
these criteria to me. I think that email resides on my old computer. If I
get a chance I'll go searching for it there and post tonight.
Take care,
Pam
---
Consensus statement on the diagnosis of multiple system atrophy.
Gilman S - J Auton Nerv Syst - 1998 Dec 11; 74(2-3): 189-92
From NIH/NLM MEDLINE, HealthSTAR
NLM Citation ID:
99112842
Full Source Title:
Journal of the Autonomic Nervous System
Publication Type:
Consensus Development Conference; Journal Article; Review; Review, Tutorial
Language:
English
Author Affiliation:
Department of Neurology, University of Michigan Medical Center, Ann Arbor
48109-0316, USA. sgilman@...
Authors:
Gilman S; Low PA; Quinn N; Albanese A; Ben-Shlomo Y; Fowler CJ; Kaufmann H;
Klockgether T; Lang AE; Lantos PL; Litvan I; Mathias CJ; Oliver E; Robertson
D; Schatz I; Wenning GK
Number of References:
26
Abstract:
We report the results of a consensus conference on the diagnosis of multiple
system atrophy (MSA). We describe the clinical features of the disease,
which include four domains: autonomic failure/urinary dysfunction,
parkinsonism and cerebellar ataxia, and corticospinal dysfunction. We set
criteria to define the relative importance of these features. The diagnosis
of possible MSA requires one criterion plus two features from separate other
domains. The diagnosis of probable MSA requires the criterion for autonomic
failure/urinary dysfunction plus poorly levodopa responsive parkinsonism or
cerebellar ataxia. The diagnosis of definite MSA requires pathological
confirmation.
Major Subjects:
Autonomic Nervous System Diseases / * Diagnosis
Multiple System Atrophy / * Diagnosis
* Practice Guidelines
Additional Subjects:
Human
Support, Non-U.S. Gov't
Support, U.S. Gov't, P.H.S.
Bookmark URL: /das/journal/view/N/10673346?source=HS,MI

This was the 1996 consensus statement but there was a further one in 1998
which had more detail. Hopefully I can dig it up.
Hugs,
Pam
Neurology
Volume 46 . Number 5 . May 1996
Copyright © 1996 American Academy of Neurology

Diane:
If only you were out here in L.A. I would show you somewhere to take
your husband for a good massage. Fred got one at Christmas for a gift
from my daughter.( I got a facial) The woman who worked on my husband
came out and said she knew what MSA was and that she wanted use some
warm stone on Fred, but he wanted her to ask me first if it was
alright. I question her about it and after her telling me how it
worked , I didn't think that it would hurt. Fred came out an hour
later and was feeling great. The woman was kind to him. Didn't make
fun of his illness or the his weight (185lb to 252lbs).I don't know
if your husband wants to try it again, it may of turned him off
forever, but look for another for him if he still does want the
massage. There are some good ones out there, ones that you don't have
to walk downstair just to have them beat you up while your laying
down and then have to pick yourself up to walk up again.You know if
your husband never wants one again, I couldn't blame him, this had to
be a nightmare for him and you to.
I hope you fine what he needs, the right massage is great.
Always Vera

Your questions are great ones Jerry and you're taking me to the limits of my
knowledge on the subject.
Well my mother-in-law presented with symptoms at about age 48 or 49 I think.
She was diagnosed at age 51 and died at age 55. Although we don't know for
sure it was MSA(could have been PSP or even CBGD) and there was no autopsy
done, she was told OPCA as her diagnosis so I am assuming due to her rapid
progession that it was MSA. In her case she wouldn't fit the below age 51
criteria. There is always an exception and these are generalities based on
a small sample size of patients.
Correct. MSA is NOT familial, it's "sporadic". If you have MSA you will
not pass it on to the next generation.
They can indicate MSA but I don't think they necessarily rule out other
similar disorders. Sorry.. can't help you with this one, this is a question
for an experienced neurologist.
OH and incontinence point to autonomic problems. Fatigue could be indicative
of any neuro disorder. Balance is usually associated with OPCA/ataxia but
is also related to several other neuro disorders. Have you seen the
diagnostic criteria for possible and probable MSA? It points out that
several symptoms are needed from each of 3 or 4 categories before a
diagnosis of possible or probably MSA should be made. This was what came
out of the Consensus Statement on MSA in 1998. I'll dig it up and post it
today.
I admire your thoroughness is trying to understand these disorders. I
suspect that besides being worried about your brother and what he can
expect, you also are worried about your own health and that of your other
family members. This worry is what drove me to understand these disorders
as well. My husband is one of 6 siblings and I was worried he would inherit
what his mom had. I'm reasonably sure that she had MSA and it was therefore
sporadic and will not come up again in any of her family members.
Take care,
Pam

Nancy;
I read your message to Tricia and I was wondering, what does lamictal do for
you. My mother, Mable is 80 and has SDS. I mainly suffer from being a big
pain in her, uh, let's say neck. Not really. She loves me a lot. My baby
will be 24 in July and I'm 20 years older than she is. How did that happen?
I still feel like I'm only around 12. I don't even feel like I've grown up
yet. Well getting back to lamictal, let me know what it's used for....maybe
it would do good for mother too.
Mary Ann-

Pam,
I read all of the articles. Thank you for posting them.
I got this from reading them:
Patients may present after about age 20 with OPCA - either
hereditary or sporadic. If they present before age 51
they are less likely to progress to MSA. If the present
after 51 about a fourth will progress to MSA.
MSA is fairly well believed to be not familial
(at least I read it that way) so if you presented with
OCPA and progressed to MSA you had sOPCA. Yes?
OH, male impotence, and anal sphincter weakness are
basically diagnostic of MSA vs. OPCA. Yes?
MSA is more progressive than OPCA. Yes?
Thanks,
Jerry

Pam,
That reminds me of the way my daughter when she was
about 5 or 6 sang Jingle Bells. She sang "one horse
threw open his leg" which you may recognize as
"one horse open sleigh".
Jerry

LOL!

Greetings Diane!
I feel for your husband. I get that all too often. Being overweight is a
serious health problem. But it should not be an excuse for people to be
incredibally rude.
And there is a real possibility (especially with MSA and PD type disorders)
that eating too much is triggered by the disorder. Eating releases
dopamine. Of course MSA patients can struggle with dopamine supply. That's
what Sinemet helps.
Regards,
=jbf=
John B. Fisher

This article from NYTimes.com
has been sent to you by kaymac55@....
this is sad news
/

Neurology
Volume 49 . Number 6 . December 1997
Copyright © 1997 American Academy of Neurology

Neurology
Volume 46 . Number 5 . May 1996
Copyright © 1996 American Academy of Neurology

It's no wonder you are confused, there is alot of incorrect or misleading
info out on the web and the only way to know for sure if you have MSA is
autopsy.
One thing you need to understand is that OPCA is a diagnosis given based on
symptoms. There are many causes for these symptoms. Ataxia or
incoordination is the most common symptom.
In a nutshell this is the scoop on OPCA.
1. It can be either hereditary(familial) or non-hereditary(sporadic)
2. The hereditary forms are called SCA (Spinocerebellar ataxia). There are
some genetic tests available for several types. In general if there is no
family history of similar symptoms chances are good the form you have is
non-hereditary. Lots of neurologists will test for SCA just to be sure.
Sometimes the family history is not clear and sometimes there can be a
genetic mutation and the disorder can appear suddenly in one generation and
then be passed on from that point. This would be extremely rare.
3. If you are reasonably assured your OPCA is non-hereditary then the
statistics are that only about 25% of sporadic cases of OPCA are actually
MSA. See:
4. Other causes of sporadic OPCA include: Alcoholism, Celiac Disease,
Vitamin B12 deficiency, Hypothyroidism, certain cancers
5. There is no way to tell how fast any individual with OPCA will progress
in their symptoms. In general researchers can say that OPCA progresses more
slowly but when they say that they are also looking at a group of people
diagnosed with OPCA who do not have the same underlying cause for their
symptoms. There is no way to draw a valid conclusion about every apple in
the barrel when the apples are mixed in with oranges, peaches and pears...
you get the picture.
6. I'm reposting some research articles on OPCA and MSA.
Take care,
Pam

I have search all over Springfield, IL for a good massage therapist for
my husband, one who deals in neuromuscular. Well finally I found one (I
thought), and Dale went there yesterday for his first session.
The first problem that we encountered was that Dale had to walk down 2
flights of steep stairs to get to the room. (not good when you are
having problems with your balance). Second the therapist took one look
at my husband and said I can tell you right now your problem is not MSA,
its that you are OVERWEIGHT. That should have been enough, but Dale was
determined to see if this guy was the therapist for him. During the
whole massage the therapist reinforced
Dale 's weight.
Dale said the guy hurt him so bad that he had to ask him to quit and
when Dale got off the table the guy said you don't have MSA you are just
to "fat". Needless to say that will be our first and last trip there at
$60 per hour.
It's as if we don't have enough to worry about with this disease.
Thanks for listening.

Tricia:
ooops , ok it's late and I've been over worked. I just went back and
saw that your son is 9 and not 6. Can I blame it on looking at it up
side down. Ok! well I could give it a try. Anyway also now that I
have had a cup of coffee and woke myself up. I see it is Glendale ,
Calif your living at. We are just outside of L.A like I said. If you
would like to talk ever, just e mail at fvjames@.... I know
things can be hard at times and it help's to talk. Here if you need a
friend. Remember that.
Hugs Vera

Tricia:
So you got the Old "It's all in your head " line from your doctor
also. That seem to be something they say when they can't fine the
reason for what is wrong. My husband got the same line for the first
year that he had his MSA. Also my girl friend mother got that same
line. She passed away last October of cancer, so it wasn't just in
her head. Sometimes it's hard to fine the answer, but you got to hang
in there and keep going.I know at times my husband wants to give up.
Some days are bad other days are worst.He also wants to not go out or
have people see him the way he is. Other times he'll ask me if I'm
ashame to be seen with him. The answer to that is never. Don't lock
yourself up. Life is a gift , enjoy it for as long as you have it.
None of us know when we will be called home. Also enjoy your kids,
have fun with them and do what you can with them, even if it's just
going to the park and watching them play. They will remember that
always. We've been lucky we have the grandkids and we've had one here
with us for almost 6 months. It's been some extra work, but it's also
been a joy. It gives Fred something to look forward to each day and
at times when I've been down she has made me laugh. Be thankful for
each day you have to be with your kids. Make the most of it. They can
really make you laugh at 6 years old, I bet he comes up with all
kinds of thing to make you laugh. I know my grandkids do. Just think
of all those times.
I think you said you were in Glendale. Is that Calif? We're just
outside of L.A.
Let me know.
Always Vera

Marilyn, Tom & I have hit a few museums in our fall and winter travels,
bought numerous books, read several and I am still working on how to develop
my concept - thanks for asking. My 3 grandchildren arrive in a week and I
am working on a plan to present the history of Seattle that is
understandable and interesting to a 7 & a 5 year old (the 2 year old will be
spared!). If & when we come your way, I want to see the museum where
Meriweather Lewis died. Joan & Tom

And that it is. Nothing like friends to get you pass the hard time of
your life.
One of God's greatest gift. FRiends
Hugs to my many friends
Vera

Marge,
Whoever told you 7-11 years terminal for MSA was totally wrong. If you look at
clinical studies, the range is more like 2-22 years and we here on the list know
one that is around 27 years. According to your figures several people on the
list now would be dead, including my wife Charlotte, who has been diagnosed with
a brain disorder for over 11 years now. She had symptoms at least two years
before that. When you put stuff like that on this list and it goes to new
people, it can be depressing. Have you ever read up on MSA? As many people
live more than 9.5 years as die at less than that. There is no magical number
of 11 years. Anne Pledger is still walking at 22 years.
You say that Al was diagnosed as MSA in 1996 and you had a second opinion, yet
you don't mention any known movement disorder specialists or clinics. You
mention Linda Nee at NIH, did you bother to get her title? I can only find her
phone number, she is not a research person and is not in the organizational
listing of NIH.
You have never responded to me as what his exact symptoms or severity of them
were other than orthostatic hypotension, incontinence, both bladder and bowel,
slurred speech, could not rise from chair nor get on or off bed, rigidity, could
not walk unassisted, low blood pressure drooling. Drooling is not an early
stage symptom of MSA and Sinemet tends to dry the mouth. Were all of the above
symptoms "reversed"? Did he have impotence and if so when did it occur? Was it
reversed also. If he had rigidity, did he have foot drop? You have been
mentioning NIH for three months now as well as a medical write up on a website,
but neither appear.
Does he exhibit cogwheeling, loss of reflexes (if so - where?) or any of the
neurological signs of the disorder?
You mention the Shy-Drager form of MSA, but then you mention that Al does a
treadmill for 15 straight minutes and riding a bicycle for 15 minutes then
working with weights for 30 minutes every day. What is his BP after all this
exercise? What is his heart rate? This does not sound like a man with even the
Shy-Drager form of MSA. He certainly could not do it with the other forms of
MSA.
You keep mentioning that he has been off the Sinemet for 17 months, it ought to
be 20 months now. Sinemet acts like a protein, which is exhausted from the body
totally in about 30 days. Even if you doubled that, all effects should be gone
in 60 days at most. I do not doubt that Sinemet may have caused hallucinations
as it is well documented in the literature you got from the pharmacy with the
prescription. But in reality it also tells you that if you keep using the
Sinemet, the hallucinations tend to go away with time. My wife has been using
Sinemet for over ten years now almost eleven. She hasn't had hallucinations in
at least 6 years. How many Sinemet was Al taking when he did take them? What
strength were they? Maybe he was overdosing on them - which will definitely
cause hallucinations.
What cleansing agents is this Colet using, maybe they are causing the
hallucinations as many "natural" substances can cause hallucinations. Do you
know specifically what is in them? She uses "a combination of both when
treating her patients". What Western methods does she use? You have ruled out
florinef and Sinemet, what else is there?
If you are truly interested in getting Colet recognized why go to NINDS when NIH
has a specific Institute for this:
The National Center for Complementary and Alternative
Medicine (NCCAM) at the National Institutes of Health (NIH) is
dedicated to exploring complementary and alternative healing
practices in the context of rigorous science; training CAM
researchers; and disseminating authoritative information.
There are currently 19 studies of acupuncture alone.
NCCAM Clearinghouse
P.O. Box 8218
Silver Spring, Maryland 20907-8218
Toll Free: 1-888-644-6226
TTY/TDY: 1-888-644-6226
FAX: 301-495-4957
I'm sure they would look at your documentation of all of this. I know NINDS
looked carefully at all of Charlotte's records (a file the size of the
unabridged dictionary).
Bill and Charlotte Werre

Debbie:
Once again I'm so sorry to hear about your dog. I know how much your
dogs have been the center of your life since your mother passed. I
know it has to be hard for you, but I know you will not let him
suffer.
Wish there was more I could do for you.
My prayer are with you and otis.
always Vera

After two long years of being sent from one doctor to another my
husband has been diagnosed with MSA.It has been such a long and
frustrating journey.Mainly because it was very clear that so many of
the specialist that we waited for weeks to see did not take the time
to honestly put all of the symptoms together.In a very strange way it
is a relief to at least be able to make sense of all that is involved
in this disease.If not for persistant research on my behalf we would
not have any education on this illness.This website is a blessing to
so many that can share not only the medical experience , but most of
all the emotional support we all need.It is frightening to see so
many
involved in this silent epidemic as it is referred to, and
neurologist
unaware or maybe just unwilling to help educate or refer patients
where they can receive help.I am like all of you that are in the
caregiving end.I read the post from Earl and wished that I could just
give him a hug for the loving and giving person he is.Thank you all
for your input that allows those that are new to this disease a place
to come and share.Time is so limited. I will be in touch as much as
possible and please know I am praying for all of you and your loved
ones. Betsy

Hi Tricia. I saw u were a mom and in her 40's with 2 sons. I have 1 son
-18 yrs. old and I am 42. Friday I was told again atypical parkinson,
ect. I am on proamatine and florineff sinemet, lamictal.Right now that
is great, but yeah u have a son and u want everything for that child.
Tricia u have ur sons, a husband, urself- wow!
Exercise is very important and we have our young age on our side. Ask
ur doc about type of exercise. I noticed u wrote "seem to have SND".
Please tell more about urself. What do u like to do? Do u volunteer at
ur son's school? work outside ur home other than yardwork:)? Drive?
I remember reading my chart and seeing Intial impressions:SND SDS
Atypical Parkinson...There was more but back then that was enough to
read. We had 3 computers at that time at home and u bet 2 were being
used. My son was in grammar school, BUT he is going to be graduating
high school this spring! I tremor alot and this June I will be more than
my usual shaking:)As a young mom I can relate to some of the fears of
'leaving ur son' you just being diagnose. What my husband and I did
(actually me insisting) was talking with a social worker who dealt with
kids. The teachers at his small school helped alot also. Another is a
close friend whose parents have positively influenced my son's life.
They even had a birhtday cake and made birthday dinner for him one year.
Just so many thoughtful people and no I don't know why. BUT doesn't
really matter why I guess, what matters are these great people keep all
3 of us alive and going in their own special ways. We will never
financially be able to repay nor most likely be able to physically
return the same support.
I guess I am trying to say from one mom to another ur still their mom no
matter what. They need u and u need them. Even someday when they go away
to college or on their own we will always be their mom.
This list is nice and small. My diagnosis has changed. To what?? We are
still refining that and for us that's ok:)
Nancy m.

There is no need to email me privately anymore. I guess you are getting this
but I am not getting any messages from the list (including the ones I send).
Thanks, Debbie

Hi Vera
I'm still here, just in the shadows for now. Yes, Elmer was on
Desmopressin (used as nasal spray) for several months but we finally
gave up on it. I think it was doing some good but he insisted on
getting up every 1 to 2 hours all night long to be taken to the bathroom
anyway so we took him off it considering it as wasted effort and an
expensive one too. It does decrease the urine output at night when
used.
Elmer had been holding his own but is declining now. We had him in the
hospital last week with aspiration pneumonia. He has started to have
problems within the last few months and has grown weak due to lack of
proper food intake and his kidneys are not working well due to lack of
proper fluid intake. He will not have a feeding tube of any kind nor
will he allow a catheter to be used. At 80, he has earned the right to
say when he has had enough.
He is very tired now and was quite upset about being put into the
hospital. He did not want to go but wanted to be left alone. His
quality of life has now deteriorated and we are trying to honor his
wishes but my mother-in-law insisted he be placed in the hospital which
resulted in them giving him blood, antibiotics and IV fluids.
We continue trying to make him comfortable. My mother-in-law had gall
bladder surgery last month and is doing well after full blown surgery.
We brought my mother up from Florida and now have her in assisted living
which is going so-so. My days are getting longer and my nights are
getting shorter.
Much Love To All
for the next one to hit and we are due again!!!!
Sally

Please email me immediately at dwhite@... if you get this. Thanks,
Debbie
-

No I did not write it, oh to be that talented, I just thought that there
are many things that we can be thankful for.
Not this disease but other beautiful thing around us and our children.
Just hang in there and keep going for those boys, they need your love of
them.
Ann from Soddy,TN

Shyrager-MSA-Reversal 18 months-Alternative Medicine

March, 2001

FIRST I WOULD LIKE TO MAKE CLEAR A FEW THINGS: THIS IS OUR PERSONAL EXPERIENCE. I AM NOT PROFITING IN ANY WAY BY SHARING THIS INFORMATION, AND LASTLY, I AM NOT RECOMMENDING THAT ANYONE GO OFF THEIR MEDICATIONS OR TAKE ANY OTHER ACTION.

I want to tell you about my husband Al Soeffker, 74. diagnosed with Multiple System Atrophy-aka Shydrager Syndrome in 1996 at the VA Medical Center in Minneapolis, Minnesota. Symptoms early 1990s. Second opinion the same, prognosis 7-11 years terminal . I contacted Linda Nee at NIH, Mayo Clinics Research Dept and numerous sources, prognosis the same. At the time of diagnosis his Neurologist put him on Levadopa-Carbidopa and Fludrocortisone. After three weeks he started having severe hallucinations, I complained about this but was told, "it will help". Not true in his case. He has a very low tolerance to any form of Western prescriptions or over the counter Medications. I believe this issue should be addressed before prescriptions are written, (I am so brilliant, after the fact ). Although it has been 17 months since I took him off these drugs, the hallucinations continue, they are a huge problem and severely affect our daily lives. In Sept, 1999 it was obvious that his
system was rapidly deteriorating. Incontinence, both bladder and bowel, slurred speech, could not rise from chair nor get on or off bed, rigidity, could not walk unassisted, low blood pressure drooling, iris atrophy,- etc. (saw gold on edges of objects- I later attributed this to the fact that in a very short time he had cataracts in both eyes which needed to be removed as soon as possible. After surgery in June and August of 2000- this was gone). . I was DESPERATE and I decided to look for help from Alternative Medicine. I made a lot of calls and then my dear friend, Jeanine, told me of an amazing woman who has treated her daughter for severe Myopia. Lora states that," my vision is greatly improved, stabilized and I feel confident that it will continue to improve." (info upon request-Lora) She is Colet, Lahoz. BSN., R.N., MS., (Nursing Sciences), L.ac., Owner of the eastwest clinics in White Bear Lake, Minnesota. web site is www.eastwest-mn.com email is eastwest@....
Because of her Western Medical Education and her Eastern Medicine Training she told me that she uses a combination of both when treating her patients. On Sept.13,1999, when I told her he had Multiple System Atrophy, AKA. Shydrager Syndrome, she said' 'I CAN HELP' She took his medical history. First treatment we had great difficulty getting Al on the Acupuncture table. The plan of treatment was two Acupuncture treatments weekly, she used needles and Electro Stimulation. She used 60-90 needles, each treatment. ( I counted them from time to time.) Cleanses and Supplements Colet said that , "if one part of the body is sick the whole body is sick", thus she treats the whole body. After that first treatment we helped him sit on an armless chair and while we were discussing his future treatments he rose from the chair unaided. To say that I was shocked is putting it mildly, and I felt such hope for the first time since 1996.

The reversal of his symptoms was rapid, in my opinion, the incontinence was reversed in four treatments, ( it took four more treatments before he was totally at ease) After six treatments he rose from a kneeling position on our pontoon boat by holding the handrail. The drooling she had under control in two treatments. About every three months or so when I notice a bit of drool, she treats it and then once again it is under control.

I asked Colet to send me info as to how she dealt with the drooling problem.

She responded - Marge, for the drooling problems that Al exhibited as part of the MSA Syndrome, I used

the following points in pairs-L14, GB20 and St.7. In the beginning I connected L14 and GB20 with

electro Acupuncture Stimulation. The frequency set at intermittent and the intensity between 2-4. To find an Acupuncturist I would suggest that you find a Four Year Acupuncture College, most major cities have one, and ask them for a Graduate Referral. Again, I feel very strongly that the method of treating the whole body as Colet does is the reason for Al's success, plus Supplements and Cleanses. His case history as written by her will soon be on her Web site: www.eastwest-mn.com When I asked Colet about his low blood pressure she said "I can lower high blood pressure, I can surely raise low blood pressure. She raised it to 117-78, dropping by 6 points after rising from a sitting position. It has remained stable for 17 months except for an interesting episode.. He continued taking treatments until Jan. of 2000. On Jan. 10 we flew to Florida, I soon discovered that his blood pressure was low, I did the salt tablet routine again to no avail. I decided to go back to Minnesota
for four days in Feb., twin Grandsons Hockey Tournament,( good excuse) and I wanted to have Colet fix the blood pressure problem. He had four treatments, his blood pressure returned to 117-78 and has remained so to this day. (did not affect subsequent flights) Does altitude affect blood pressure, I am sure it does in some cases. Incidentally when Colet was taking his medical history, I told her he was wearing hearing aids and not happy with the results produced. and refused to wear them any longer.(two sets at $3000 per set) she said "I will work on that." He hears better now without the hearing aids than he ever did with them. He converses well, other symptoms reversed. Colet believes that Al had a Systemic Candida infection for many years that was undiagnosed and therefore not treated. Colet believes that this Candida weakened his system and predisposed him to developing MSA. Colet believes a major part of his recovery was due to him using herbal Anti Fungals to remove
infection. I agree. Some things take longer for Al to do, but, he is 74 and he is ALIVE after going through all of this. I thank God and Colet for this.. These past 17 months that he has been off the Meds he has become aware of the fact that he has hallucinations and yet he cannot comprehend that they are only that when he is hallucinating.. Sorry if this sounds strange. This troubles him deeply. When we are in Minnesota, from April thru November, Al continues to take Acupuncture Treatments and he is on Cleanses and Supplements. During the earlier part of Al's treatments , Colet suggested that we could cut back on the number of treatments, twice a week, I chose to continue in this manner due to the fact that I was concerned that a reversal of his great progress might occur. In July of 2001 we decided to have just one treatment per week. During the winter months Al and I workout at a fitness center, one hour a day, six days a week. Al rides the bike there for 15 minutes,
tread mill 15 minutes and the last 30 minutes he uses weights. Once the muscles are loosened it is important to exercise. In October of 2000, I was at the VA Med Center for a routine Cardiology appointment for Al, I spoke with Theresa Atkinson in Neurology, re: Al's case, I wanted someone to know about this reversal so that other patients with MSA might benefit from our experience. She wanted us to see Dr. Ashe, he had a conference to attend, she also wanted Dr. Khalaf Bushara to see us. However he was busy all day . I thanked her and left. Shortly after that we were summoned to Dr. Busharas office. He reconfirmed that Al has MSA, listened to my story and DID NOT PASS OUT AT THE MENTION OF ALTERNATIVE MEDICINE. (Neither had Elizabeth Norheim, R.N., M.S., -Nurse Practitioner at the VA Med Center, when I was complaining about Al`s hallucinations.) I thank Dr. Jack Drucker, Chief of Staff for having these individuals on his staff who have "an open mind." I ended my
conversation, with Dr. Bushara, by telling him of my intention to contact NIH again. He said that he had come to Mpls from the National Institute of Neurological Disease and Stroke in Bethseda, Md. He then asked, could we, would we travel? I said, yes.

He then sent correspondence to Dr. Mark Hallet at NINDS asking that he see Al. However I feel strongly that Colet Lahoz is the person who should be heard, I believe that only with her protocols should anyone try this method of treatment. Colet has had success treating patients with nerve diseases. She has documented cases of Multiple Sclerosis reversals, also reversal of Fibromyalgia. THIS IS NOT A CURE, just a reversal of his symptoms, his recovery is amazing.

This has been successful for us and I wanted to share this with other MSA patients. Al & Marge Soeffker

Winter -Westbay Point & Moorings, 6500 Flotilla Drive, #141, Holmes Beach FL 34217.-1464 PH/FAX 941-778-3530

Summer -14323-74th St. NW. Annandale, MN. 55302-3460 PH/FAX 320-274-5201

E-mail - msoeffker@...

This is a test to see whether I receive this. I am not receiving anything

Don,
Norton already has a fix for it, so download the March 6 definitions if you have
Norton AV.
Bill

I appreciate your thoughts! Marilyn in TN where the Jounquils are blooming

New Virus Takes Advantage of 'Baser Instincts'
Wednesday, March 7, 2001
By D. Ian Hopper Associated Press
[INLINE] E-mail This Story

FOOTNOTE: WASHINGTON -- A destructive computer virus hit at least 30 organizations and one federal agency Tuesday, security experts said.

Like the most recent widespread virus that used the name of tennis star Anna Kournikova, this new program called "Naked Wife" takes advantage of users' "baser instincts," an antivirus company spokeswoman said.

Steve Trilling, director of research at the Symantec Antivirus Research Center, said about 20 of Symantec's clients in Canada, the United States and Europe had been hit.

Trilling said the virus, which appears with the subject line "FW: Naked Wife," deletes almost all of a computer's vital system files. It also sends itself out to everyone in the user's e-mail address book.

"It essentially destroys your Windows operating system," he said.

Trilling said the virus may have come from Brazil. Information inside the virus source code mentions AGF Brasil, an insurance company, and the name "MHSantos."

"One could fake this stuff, but indications in a virus for the most part tend to be correct," Trilling said, adding that names found in the recent "Love Letter" virus eventually led to that program's creator.

The virus e-mail contains an attachment called "NakedWife.exe." Like most viruses, the recipient's computer is only infected if the receiver runs the attachment, and major antivirus companies have released software that detects and removes it.

Susan Orbach, spokeswoman for Trend Micro, said her company has received reports of infections from 10 corporate clients, including two large telecommunications firms, a federal agency and a "multinational conglomerate," she said.

"This is not any new technology we haven't seen before," Orbach said. "It's social engineering to take advantage of our baser instincts."

Both Trilling and Orbach suggested that corporate network administrators block incoming program attachments, since it seems that computer users will continue to click on suspicious attachments, no matter how many times they're stung.

"Very few people have a legitimate reason to receive executable files in e-mail," Orbach said. "Haven't people learned?"

Kathy,
I am new here, but we still need you. You have knowledge that some of us
newcomers don't have. And, you still have things you still need to work
out.
Tricia Jensen
pajensen@...

Tricia,
I nearly freaked out when I saw your name, Patricia Jensen and you signed you
e-mails Tricia. My best friend from college for the last 25 years name is
Patricia Jensen and she goes by Tricia.
Dawn Morley - Celeste O'Neill's sister

You two sound like a beautiful couple and she is so lucky to have you.
Tricia Jensen
pajensen@...

Kathy,
I know how you feel about leaving the group. I felt that way too a few
months ago but Pam and Bill convinced me to stick with the group. I am now
thankful that I did. The group has grown so large that it has lost some of
the "intimacy" that it had when I first joined. I still find that it does
serve as a great place of knowledge and that people really do care, we just
need to express our needs to the group. Sometimes I find it depressing when
so many are having serious problems but other times I find it uplifting when
I see words of encouragement. I did unsubscribe for a short while but then
I realized I couldn't do it on my own. I do not know anyone personally with
this problem and so it was difficult to talk to people and have the same
understanding as you find in this group. Stick with it even if you don't
post much. Know that we all care about you and your family and feel free to
glean or contribute.
With prayers for you and your loved ones.
Sylvia

Patricia,
Before 1995, the most popular set of symptoms was the BP drop of Shy-Drager and
therefore it was diagnosed more often. In 1995, they decided that SDS, OPC and
SND all generally ended with the same set of symptoms and decided multiple
systems atrophy (or multi- system atrophy) was a better description.
I don't know what stage you are at now, but if you just recently got your
diagnoses, there is a good chance you will get to see your youngest graduate
from high school. By the time he graduates, many expect a cure also. So stick
around.
So do all you can for yourself:
* Exercise each day to maintain mobility (range of movement exerise)
* Drink enough fluids (64 oz per day for an average person)
* Remember that any sudden change for the worse may well mean you have an
infection, don't wait - go to the doctoryour "normal" temperature may be as low
as 96 degrees, so find your normal temperature now and keep track of it.
Take care, Bill and Charlotte
=============================================

Mary Strong,
Thanks for responding about my Dad. My brother works away all week and I
live a distance from my parents so hw relys on his outings when the
homemaker comes to care for Mom. Right now he is working along side of a
friend fixing up his snowmobile. He also plows driveways for neighbours
when it snows and that gives him a bit of a break. They travel to
Vanderhoof (the town I live in) once a week and do the coffee shop thing-
visit friends from bakery to deli and then shopping. It is always worse for
Dad when Mom is having problems with her bowels or has infections. He not
only has the pressure of worrying about how to help her but he has the
messes to clean. Right now things seem not too bad. We all try to help as
much as we can but unless we actually lived with them we can't do much about
the kind of help they need. My youngest daughter is going to go to spend
spring break at their house and wash walls and do Grandma's spring cleaning.
They are looking forward to that.
Sylvia in sunny Vanderhoof.

Earl, I figure Iris must really deserve someone like you. Debbie

I realize this is a little long, but, at least to me, so meaningful, I
wanted to share it. It is kinda like the chandelier hanging over our heads
that Gail spoke of. (good analogy Gail) Bernice
Fear of Transformation
From The Essene Book of Days by Danaan Parry
Sometimes I feel that my life is a series of trapeze swings. I'm either
hanging on to a trapeze bar swinging along or, for a few moments in my life,
I'm hurtling across space in between trapeze bars.
Most of the time, I spend my life hanging on for dear life to my
trapeze-bar-of-the-moment. It carries me along a certain steady rate of
swing and I have the feeling that I'm in control of my life. I know most of
the right questions and even some of the right answers. But once in a while,
as I'm merrily (or not so merrily) swinging along, I look ahead of me into
the distance, and what do I see? I see another trapeze bar swinging toward
me. It's empty, and I know, in that place that knows, that this new trapeze
bar has my name on it. It is my next step, my growth, my aliveness going to
get me. In my heart-of-hearts I know that for me to grow, I must release my
grip on the present, well-known bar to move to the new one.
Each time it happens to me, I hope (no, I pray) that I won't have to grab
the new one. But in my knowing place I know that I must totally release my
grasp on my old bar, and for some moment in time hurtle across space
before I can grab onto the new bar. Each time I am filled with terror. It
doesn't matter that in all my previous hurtles across the void of unknowing,
I have always made it. Each time I am afraid I will miss, that I will be
crushed on the unseen rocks in the bottomless chasm between the bars.
But I do it anyway. Perhaps this is the essence of what the mystics call the
faith experience. No guarantees, no net, no insurance policy, but you do it
anyway because somehow, to keep hanging onto that old bar is no longer on
the list of alternatives. And so for an eternity that can last a microsecond
or a thousand lifetimes, I soar across the dark void of "the past is gone,
the future is not yet here." It's called transition. I have come to believe
that it is the only place that real change occurs. I mean real change, not
the pseudo-change that only lasts until the next time my old buttons get
punched.
I have noticed that, in our culture, this transition zone is looked upon as
a "no-thing", a no-place between places. Sure the old trapeze-bar was real,
and that new one coming towards me, I hope that's real too. But the void
in between? That's just a scary, confusing, disorienting "nowhere" that must
be gotten through as fast and as unconsciously as possible. What a waste! I
have a sneaking suspicion that the transition zone is the only real thing,
and the bars are illusions we dream up to avoid where the real change, the
real growth occurs for us. Whether or not my hunch is true, it remains that
the transition zones in our lives are incredibly rich places. They should be
honored, even savored. Yes, with all the pain and fear and feelings of being
out-of-control that can (but not necessarily) accompany transitions, they
are still the most alive, most growth-filled, passionate, expansive moments
in our lives.
And so, transformation of fear may have nothing to do with making fear go
away, but rather with giving ourselves permission to "hang-out" in the
transition between trapeze bars. Transforming our need to grab that new
bar, any bar, is allowing ourselves to dwell in the only place where change
really happens. It can be terrifying. It can also be enlightening, in the
true sense of the word. Hurtling through the void, we just may learn how to
fly.

Yesterday was my birthday and I was 76 years young. My wife Iris has
MSA and she had a very bad day yesterday, Yes I go out into my garage
and cry a lot, but I do not let her know. She is trying to cope with
this disease as best she can. As a caregiver, she hates to see me do
the work around the house and take care of her, but she has always
been my best friend and has helped me out when I too was down way
back
there and I will not let her down as long as I have a breathe in my
body. She is beautiful and a wonderful wife, mother,grandmother,and
great grandmother. God is good and he will see us through this. To
the
one who had a bad day, keep your chin up and trust God to see you
through these trying times. This group is a wonderful bunch to talk to
via E mail and they are always there for you.
Thanks
Earl

Patricia, my mother has had a similar situation for many years,
actually she had some symptoms since about 1988 or so. Since then, she
has had many good years, and although she has to battle the problem
with the added complication of old age, she has done so, so, well.
So don't get too discouraged, with good attitude, nutrition, and
help, you will not be that burdened. No guarantees, of course, but
that has been my experience........

Thank you Marilyn,
I needed to be reminded of this. My tendency has been over the last
year or more to pull within myself and not want to go anywhere or do
anything. Part of the problem was that the doctors were telling me
everything was just all in my head and just giving me antipyschotics
which made me sleep so much. I changed Internists, who has now sent
me to new neurologist. This one sounds interested and wants to help
me, so things are looking up.
Yes, I do have to remember to create new, good memories for both my
sons and my husband.
I will pray for your grandson and your husband. It will be good for
your husband to be able to see his grandson. My oldest son had to
stay in the hospital for a long time after he was born, and is is so
heartbreaking for the parents. I hope that he becomes healthy like
my son did.
Tricia
home. Our newest is a grandson who was born 10 weeks premature this
year

Both Jonquills and Daffadils are of the Narcisis (sp?) family. I
always thought that the Jonquils were the miniture variety of the two-
-usually small white flowers with a yellow center. The Daffadils
were the larger variety of the flower--usually yellow with yellow
center cups. But recently I have seen white daffadils with yellow
center cups, so I don't know if they have been crossing the two
varieties.
There is a story out of Greek Mythology about how Narcissis came to
exist. I have not read it since my teen years, and I am now 46, so
this is what is out of my memory. It was always one of my favorite
myths.
There was a nymph who was a devoted companion of Aphroditi (Venus in
Roman myths). She had made the Mother of the Gods ("Hera") angry by
telling her a lie, so Hera took her power of speech away. Aphroditi
felt so sorry for her companion and missed her beautiful voice so
much that she wanted to restore the nymph's voice, but she could not
complete restore or set back a punishment of Hera. So, she gave the
nymph's voice back to her, but only under a special condition -- the
nymph could only repeat the last few words of anything of which was
said to her. The nymph fell madly in love with a beautiful male
youth by the name of Narcisis. Narcisis thought the nymph was
beautiful and enchanting, but he also thought that she was stupid
because she would not answer his questions, but only repeated his own
words to her. There was another problem in that Narcisis was so
conseded that he thought that no one was a beautiful or handsom as
he, and he loved to sit by a still lake and look at his reflection.
He shunned the nymph and told her to stay away from him, that he did
not need to have such a stupid girl bothering him.
Well, the nymph became so sad that she hid in a cave and did not come
out to get food to eat or drink. She slowly pined away in there over
her lost love. When Aphrodite found her, she could not bear to be
without the beautiful voice, so she instructed the cave that if ever
anyone should call into the cave, the nymphs voice would repeat their
words. The nymph's name was "Echo". And to this day if you call
into a cave, Echo will answer you.
The story does not end here however, in that Aphrodite sought to take
revenge upon Narcisis. Because he thought that he was so beautiful,
and he so much loved to look at his reflection in the water, her
punishment would be that he would fall so completely in love with his
own image in the water, that he could not bear to leave it. So,
Narcisis sat by the water and looked at his image until he also pined
away for his love. Aphrodite did take pity upon the beautiful boy
after he died, and turned him into a flowering plant, which has
become know as the Narcisis. To this day, the natural habitat of
these flowering plants is by a pool of water or lake, and you will
often find the flowers turned down toward the water to look upon
itself.
Tricia Jensen
Glendale, California
pajensen@...

Tricia,
Many of us have feelings similar to your own. It is hard to not have those
feelings of fear of the unknown. I understand and sympathize. Know also
that your husband is also concerned. Both of you will be grieving for the
life you might have had (and may still have) together.
Some of the others on the list can tell you of research.
I will say....try to live everyday to the fullest. Drag yourself out to do
things with your husband and your children. Enjoy every minute that you can
and make as many happy memories as possible for your children. No one knows
how long you might live or how incapacitated you might become. Some folks
who participate in this list have lived many years and still function within
their family.
I say my words as the wife of a husband who has MSA and has suffered
greatly! But you know what, he wants us to keep our granddaughters this
weekend. He also can't wait until our newest grandchild can travel to our
home. Our newest is a grandson who was born 10 weeks premature this year
and spent 77 days in NICU. Their home is about 6 hours away from us. He
has been unable to leave his home except for medical treatment and cannot
travel to our home until his first birthday.
My thoughts and prayers are with you. There is hope!
Marilyn

I like this a lot Ann. Did you write this yourself? Whoever did
write it, it makes you think. I have been crying all day, and mostly
all weekend whenever I have been alone. After years of not knowing
what I had, Friday, a new neurologist, one who listened and asked a
lot of questions, told me that what I seem to have is striatonigral
degeneration (MSA) and also possibly dysautonomia. I have been
reading as much as I can. There is very little about SND. Most of
the literature says Shy Drager and Multiple Systems Atrophy. Most
articles say they are the same thing, but most of the information I
have been finding is under Shy Drager. Is this the most popular
name? I am very worried. I had a very serious brain injury in
October 1982. I had a near death experience (no I did not see angels
or God, just a bright light and a peaceful feeling that I wanted to
go to). In some ways, I still want to go to it. I am not afraid of
dying, just that I am 46 years old, and have a 9 year old boy and a
15 year boy. I have a wonderful husband. I only fear leaving them.
Especially my younger son, because I don't know how old he will be
when it happens.
Thanks for listening.
Tricia Jensen
Glendale, California
pajensen@...

Joan,
How are your travels. Have you found interesting historical sites? We hope
that you and Tom are doing ok.
Marilyn in TN

Thanks so much. Luckily, I have two kids and other animals I HAVE to take
care of, so it's impossible to get too self-indulgent about any of it. I
know I will come out of this -- just a bad time now. I have great friends
and I talk to my dad for a long time every day and that helps a lot to
ground me. Hope things are well with you, Debbie

Thanks, Melanie. Actually it's hit the fan only since November when my mom
died. Then Beasley in January. Now Otis. (My husband lost his job in
November, too.) What's hard to take is trying to figure out what's going on
when I get upset -- is it grief, worry? Is it for my mom? The Beas? etc.
Debbie

Diane-
Dr. Burns has been my neuro for years at the Cleveland Clinic. You guys
are extremely lucky to have the man. He is highly intelligent but at the
same time has a wonderful bedside manner. His knowledge of medicine
combinations are excellent, and believes what his patients say.
Sincerely,
nancy m.

Here is an interesting article about Tommy Thompson and stem cell research
testimony.
Bill and Charlotte
http://dailynews.netscape.com/mynsnews/story.tmpl?table=n&cat=50700&id=200103061\
712000163552
Assoc. Press
Tuesday,
March 6, 2001
Thompson Troubled by Stem Cell Ban
WASHINGTON (AP) - Health and Human Services
Secretary
Tommy Thompson told a Senate committee Tuesday he
is
troubled by a law that bans federal financing of
promising
research using embryos.
Thompson's comments suggested he may be at odds
with the
White House and its anti-abortion supporters over
use of stem
cells taken from embryos, a process that could
lead to cures
for Alzheimer's, diabetes and other diseases.
Immediately
after the hearing, however, Thompson's spokesman
told
reporters that the secretary meant to deliver
precisely the
opposite message.
The exchange left unclear what Thompson will
ultimately
recommend and over his personal views on stem
cells
research.
Stem cells are building blocks for all human
tissue, and
scientists say research with them could lead to
revolutionary
therapies. The most useful cells are derived from
embryos
discarded at fertility clinics, and abortion
opponents say it is
wrong to use them for research.
Congress has barred federal money for research
that destroys
embryos, but the Clinton administration concluded
that the
National Institutes of Health could pay for
research using cells
that had been extracted with private money.
Applications are
due next week.
The Bush administration remains undecided whether
to allow
continued funding, although President Bush has
suggested
that he opposes it. Last week, Thompson said the
matter is
under review but said in the meantime,
applications should be
submitted and would be considered and funded if
it's legal to
do so.
The White House, displeased with those comments,
told
Thompson he should not move in front of the
president on the
issue.
``I've learned the hard way already,'' Thompson
told the
Milwaukee Journal Sentinel in an interview about
his new job.
``You can't be quite as direct as I was as
governor.''
At a Senate Budget Committee hearing Tuesday,
Sen.
Gordon Smith, R-Ore., told Thompson he hopes the
administration will allow the research to move
ahead.
``We ought to err on the side of helping people
with these
hideous diseases,'' Smith said, noting that he
opposes
abortion. ``Stem cells may be one of the
answers.''
Thompson responded that he has always been a
strong
supporter of medical research, but the law may
prohibit using
federal money in this case.
``I am troubled, as you probably are, by the law,
and I know
Congress is trying to change the law. But there
is a law on the
books. It is troublesome,'' he told Smith.
After the hearing, Thompson's spokesman, Tony
Jewell, told
reporters that the secretary meant to say that he
was troubled
by the Clinton administration's interpretation of
the law. Later,
Jewell said he checked with Thompson and
confirmed this.
Jewell allowed that being troubled by the law and
being
troubled by the Clinton administration's
interpretation of the
law suggest opposite positions.
Still, it is possible that Thompson believes the
law was wrong
but also believes that the Clinton administration
was out of
bounds in its interpretation. Jewell would not
say what
Thompson thinks of the law itself.
As governor of Wisconsin, Thompson praised local
researchers for groundbreaking stem cell research
they had
done.
Legislation backed by Sens. Arlen Specter, R-Pa.,
and Tom
Harkin, D-Iowa, would explicitly allow this
research to go
forward. It has not advanced in Congress.
---=
On the Net: Senate Budget Committee:
http://budget.senate.gov/

So sorry to hear that you dog is sick. You've been
through a lot the past couple of years. I hope things
get better for you soon. :-)
Melanie in OK

Catherine,
Thanks for the reply on Johns Hopkins. Your response is
pretty much what I am hearing from others. It sounds like
finding a reliable doctor to manage symptoms is the important
issue for now. I just plan to continue to push the envelope
in terms encouraging research and keeping up with new
developments.
May I ask when were you diagnosed and am I understanding
that your primary and apparently still most significant
symptom/health issue is the neurocardiogenic syncope
(which I assume is probably related to or the same as
Orthostatic Hypotension)?
I don't think any doctors really picked up on the OH issue with
my brother until he saw a neurologist for a second opinion
after he was getting no diagnosis from his first neurologist
(and ENT and Heart Specialist and GP) for his cerebellar ataxia
symptoms. That second neurologist was the first to raise the
issue of the OH and thats when we got the preliminary diagnosis
of Ataxia which was later refined to MSA/Shydrager. For whoever
may know, is it typical for the OH to present later in the
MSA progression?
Thanks again,
Jerry Cash

First: Midodrine - John, it is affirming to hear YOU say that you
find the symptoms and management "iffy" at best as well. This can be
a very lonely disorder when no one around knows what's up! I was
glad to hear that you often experienced the same things!
Here's my take on the salt stuff: I use thermotabs as well. I am
supposed to take at least 5 tablets a day. I haven't found that
spreading them out or bunching them up at certain times helps
my bp particularly. I do find that if I take them all at once it
kills my stomach, so I spread them out for that reason. Dr. C did
say that it would be best not to take them in conjunction with a meal
because you're already getting some amount of salt at that time, so
may as well take them at a more optimum time. Correct me if I'm
wrong, but I'm assuming that it builds up in your system and allows
greater blood volume therefore greater bp. So I think it's more
important to take it consitantly than it is exactly when you take it
- again, could be wrong about that! With salt, as with everything it
seems, you're just going to have to play around with it to see what
works.
Now, John's Hopkins: I spent 2 years trying to figure out what was
wrong with me. My primary symptom is low bp (neurocardiogenic
syncope) but no one around here knew enough to treat me. My
cardiologist said that the pacer was the right answer my neuro said
that drugs were the right answer and neither worked. It took going
to someone that is a specialist in the field to get what I needed to
at least begin to manage my symptoms. I see an electrophysiologist
there. Now, if you're getting good care and all the things folks are
talking about on this list are things you've heard from your own
doctor, I'd assume that you're fine where you are. If you're hearing
about treatment options that are new to you, perhaps going to someone
with more base knowlege of MSA and it's various manifestations would
be helpful. My dr at JH referred me to someone at the NIH to
"confirm" the MSA diagnosis. In talking to him, he wasn't going to
change any of my treatments in any way, he just wanted me for his
research and statistical purposes. While I think that is very
important in finding better answers, I'm just not at the point now
where I can invest all that it would take just to "further the cause"
I feel very very guilty about this, but that's where I am at this
point. I'm sure once I get a bit further down the road, I'll be more
able to be altruistic. Just not yet.
Boy, for someone that never posts I'm very wordy today! Sorry!
Catherine

Hi, Vera. Otis is in advanced kidney failure. It is a shock, as his
bloodwork one month ago was normal. But this looks like what will take him
and I am overwhelmed with sadness again. He is my rock -- my strong, strong
dog. In May 2000, he underwent a unilateral tieback for a paralyzed larynx
flap. He was 13. It was a huge operation but it prevented him from a certain
suffocation. He did so well coming out of that and although the operation
leaves him open to aspiration pneumonia, he never got it (and he has thrown
up so many times now from the kidneys). If all of this snow weren't here, I
know he would head into the woods with me for our walk to the stream even
now.
But he cannot keep anything down. If he was drinking, that would come up
too. But I administer sub-q fluids to him and he is hydrated at least. I
feel so sick about this, but I will not let him suffer if the fate is
certain. Debbie

Dawn, I am not familiar with the specifics of the cleansing, but I know they
inserted tubes into her nose for one. Don't know whether they did an enema.
My mom was in ER for about 12 hours and then was put into a room. When my
dad left, he said she looked more comfortable (of course she aspirated just
a few hours later).
Yes, I cannot stand another loss. Beasley helped me through my mom's loss,
and Otis helped me through Beasley's. Now Otis is in advanced kidney failure
(really just came pretty suddenly) and we cannot seem to treat it with
fluids. The IV fluids worked some, but now I am doing sub-Q and if he eats
at all, it all comes up again. He was 14 yesterday. I may let him go
tomorrow. He is so normal in other ways -- not weakened, etc. But his values
are sky high and he must be feeling awful. I don't want to let him get to
the point where he is totally weakened -- and I know he is headed for that.
It's hard to let go just slightly before it's obvious.
How are things going there? Debbie
-

If cold relieves swelling pain, try home ice packs to fit. Use 1 part
alcohol and 4 parts water in double freezer bags. Fill 1/2 full and squeeze
out air. Freeze to slush, wrap in towel and apply for 10 minutes or so.
Elevation helps also. LA Louise

Joyce,
So sorry to hear about your dog, Otis now. You know I've always heard losses
come in three's. So maybe this will be your last one for a while.
I hate to bother you with the graphic details, but how did they clean your
mother out? Did they literally flush her out? Nice to talk to you.
Dawn

Wanted to reply to your 2-5 story but loaned it to my home health nurse
along with Jan's problem notebook and just got letter back--no notebook.
Except for dementia you have written Jan's case history with few changes..
Even the ages are similar. BIG question. How did you achieve "beneficial"
sleep? I'm a zombie and concentration is approaching nil. Who did your
shopping? Did you have home health as I do? Jan's contractures and wounds
caused by surgical personnel either dropping or throwing him like a side of
beef differ and Jan is now using 2/3 of his lung capacity . He is unable
to control his tongue and suction is a never ending challenge. Is pneumonia
a new threat? This forum is my lifeline until I relearn to access archives
and that takes time for me. Jan's "grip" is used gently to pry his arms
loose from his body. Lengthy procedure using overhead bar and pulleys but
helps. Thanks for sharing Ken with us and ALL your observations serve the
purpose of the moment , are present comfort or future planning and
"progression" helps. This computer just ate my letter and luckily I found
it . Keep writing. We need you. LA Louise , computer illiterate weary of
playing hide and seek with on/off, error, spool 32's, illegals, etc.
etc.......

Is there a support group in or around Abilene Texas? Me dad has it and my mom
is going crazy trying to take care of him. He is declining rapidly. We have
no idea how long he has had this disease. Drs finally diagnosed him with
Parkinson's in '96. Things kept getting worse and worse as the months went
on. We finally found out something about MSA and talked to the dr about it.
He seems to have very little knowledge on this subject. We have been to a
specialist in Temple, Dr Keiser. He confirmed everything we already knew. My
mom and dad need something else to help cope with this debilitating illness.
Any advice or assistance would be appreciated.
John Moxley
Abilene, Tx

Carol;
This is VERY appropriate for my mother, Mable. Mother has SDS and OH and
rigidity has been her biggest and most difficult symptoms to concur. Mother
has been on Amanatadine for 3 years now. Sinemet was tried in the past and
she would faint. At one time she couldn't be aroused for 3 hours while in
the hospital. Last September Dr. Zieble of the Parkinson Institute in Mpls,
MN put her on Proamatine and Florinef to raise her BP. She is on a high salt
intake diet, but her potassium has be low a couple of times when they have
tested her. In February the Doc put her on Sinemet and she seems to be
tolerating it better, even though her BP is low. She says she feel better
all over.
I want the home to give her bullion soup in the morning if that is the
appropriate time, and give her a banana 3 times a week to keep her potassium
up. Being her BP is still in the low range while standing, I want to know if
timeing of salt could be a key in keeping her BP up.
Mary Ann-

Hi all,
It is impossible to trace this computer bug. It evidently waits a delayed time
after you send a message then sends itself to the same address. To isolate who
is sending it to you will require some detective work. I have done everything
listed to get rid of it on my computer and have the current protection against
it installed. Pam has sent me several messages directly and I have not received
it, so she is clear. The list is clear as we would get hundreds of emails if it
was infected. I have asked Symantec (Norton) to send a write up on it to the
group.
To find who is sending it to you delete all the list messages and go back about
50 messages and keep those addresses. The next time you get it, check all those
saved addresses and keep only common ones. Do this every time you get it and
you should finally come up with one name - that is the computer that is
infected.
The best defense is to get a good virus checker and update it daily. This costs
less than a dime a day in the USA. A good virus checker and system monitor like
Norton costs about $50 and gives free updates for a year, you can buy another
year of updates for about $20 which gives you 730 days of coverage for about
$70. In the case of Norton it also covers many little glitches such as removing
files and repairing lost disk chains. If I see the little red light come on on
my task bar, I know it is time to run a diagnoses of my computer and see if my
computer has MSA. However, Norton has fixed my computer's problems every time
over the last two years.
Take care, Bill and Charlotte
Somehow - Norton has not sent the write up to the group, so here it is
W95.Hybris.gen
Discovered on: September 25, 2000
Printer-friendly version
W95.Hybris is a worm that spreads by email as an attachment
to outgoing email
messages.
The email message or subject may include, but is not
limited to:
hahaha@...
Snow White and the Seven dwarves
The attachment may have one of several different names,
including, but not
limited to:
anpo porn(.scr
atchim.exe
branca de neve.scr
dunga.scr
dwarf4you.exe
enano porno.exe
joke.exe
midgets.scr
sexy virgin.scr
Also Known As: W32.Hybris.gen, W32.Hybris.22528.dr,
W32/Hybris.gen@M,
I-Worm.Hybris
Category: Worm
Virus Definitions: September 25, 2000
Threat Assessment:
Wild:
High
Damage:
Low
Distribution:
High
Wild:
Number of infections: 50 - 999
Number of sites: More than 10
Geographical distribution: Medium
Threat containment: Moderate
Removal: Moderate
Distribution:
Name of attachment: Random with EXE or SCR file name
extension
Technical description:
When the worm attachment is executed, the Wsock32.dll file
is modified or
replaced. Once the worm has infected wsock32.dll, it has
the abilty to monitor
the Internet connection as well as incoming and outgoing
email traffic. The worm
then scans for email addresses. When an email address is
detected whether on
an Internet site or in email being sent or received, the
worm waits for a period of
time and then sends an infected message to the detected
address.
The worm attempts to connect to the alt.comp.virus
newsgroup. If it connects
successfully, then the worm uploads its own plug-ins to
this newsgroup in an
encrypted form. It goes thru the subject header of the
messages, and tries to
match a specific format. The subject header will also
specify the version number
of the attached plug-in if the plug-ins are present. If
newer versions of the plug-ins
are found, the worm downloads them and updates its
behavior.
One of the plug-ins for W95.Hybris.gen generates a spiral
image. Upon
execution, the plug-in initially loads OpenGL libraries
which are used to draw a
large black and white spiral image. It also registers
itself as a service; this
prevents it from being displayed in the Close Programs
dialog box. For additional
information on this, see the document W95.Hybris.plugin.
This worm also has a plug-in that infects executable
programs. The DOS EXE
infection is fairly simple dropping technique. The virus
code is appended to the
end of the file with a small 16-bit dropper routine. This
routine creates a
temporary file with an .exe extension in the TEMP folder
and executes it. It then
deletes the temporary executable. In this way, Wsock32.dll
is infected with the
actual worm body. The PE executables have a much more
complicated file
infection process. PE files become infected only if they
have a long enough code
section. The virus infection plug-in packs the original
code area and overwrites it
if it will fit in the same place. This complicated
antiheuristic infection technique is
difficult but possible to repair.
If Wsock32.dll is being used by the system, the worm cannot
modify it. In this
situation, the worm will add a registry entry to one of the
following subkeys:
HKEY_LOCAL_MACHINE\Software\Microsoft\Windows\CurrentVersion\RunOnce
HKEY_CURRENT_USER\Software\Microsoft\Windows\CurrentVersion\RunOnce
It always alternates between these two keys as the worm
spreads from one
computer to another. The worm hooks onto the following
exports of Wsock32.dll:
send()
recv()
connect()
Whenever you send email, the worm sends a second message to
the same
person, attaching a copy of itself using a randomly
generated file name.
Removal instructions:
To remove the W95.Hybris.gen worm, follow these steps:
1. Run LiveUpdate to ensure that you have the most
recent virus
definitions. They must be dated September 25, 2000, or
later.
2. Start NAV, and perform a full system scan. Make
sure that NAV is set
to scan all files. When an infected file is detected,
do the following:
When Wsock32.dll is detected as infected, choose
Repair. In most
cases, NAV can repair this file. If NAV cannot
repair the file, then
you will need to replace it from the Windows
installation CD. If you
need to replace this file, see the instructions
in the next section.
NOTE: If NAV cannot repair Wsock32.dll when
Windows is in
normal mode, then try to repair it in Safe Mode.
This is particularly
true if you are connected to a network; in this
case you may see a
"sharing violation" message when NAV attempts the
repair. To try
this, restart the computer in Safe Mode. If this
is not successful,
then you must extract a new copy as explained in
the next
section.
Delete all other detected files; their contents
have been overwritten
by the worm. You must restore them from backups
or, in the case
of application software, reinstall the programs.
3. If you see a rotating spiral on the Windows
desktop, you must follow
additional steps to remove it. See the section To
remove the rotating
spiral.
To extract a new copy of the Wsock32.dll file:
This is necessary only if Wsock32.dll cannot be repaired.
You need to use the
Extract command at a DOS prompt. Follow these steps to do
this, using the
instructions for your operating system.
NOTES:
Have the Windows installation CD available.
When typing the command, substitute the
appropriate drive letter
for your CD-ROM drive for the letter x. For
example, if you are
using Windows 98, and the CD-ROM drive is the
drive D, then you
would type
extract /a d:\win98\precopy1.cab wsock32.dll /L
c:\windows\system
If Windows is installed in a folder other than
C:\Windows, then
substitute the appropriate path or folder name in
the last part of the
command that refers to the \Windows\System
folder.
For detailed instructions on using the Extract
command, see the
Microsoft document How to Extract Original
Compressed Windows
Files, Article ID: Q129605.
As a somewhat easier alternative to the following
procedure, if you
are using Windows 98, then you can use the System
File Checker
to restore the file. For information on how to do
this, see your
Windows documentation or the document Files
required for
Windows to function are missing or corrupted.
1. Do one of the following:
Windows 95/98 users: Click Start, point to
Programs, and click
MS-DOS Prompt. A DOS window appears.
Windows Me users: Click Start, point to Programs,
point to
Accessories, and click MS-DOS Prompt. A DOS
window appears.
2. Type the command that applies to your operating
system:
If you are using Windows 98, then type the
following and press
Enter:
extract /a x:\win98\precopy1.cab wsock32.dll /L
c:\windows\system
If you are using Windows 95, then type the
following and press
Enter:
extract /a x:\win95\win95_02.cab wsock32.dll /L
c:\windows\system
3. If you see an error message of any kind, then
repeat step 2, making
sure that you typed the correct command for your
operating system and
that you typed it exactly as shown. Otherwise, type
exit and then press
Enter.
To remove the rotating spiral:
W95.Hybris.Gen uses several different plug-ins. The most
common is a large,
rotating spiral. If you see this on the Windows desktop,
follow the instructions in
the document W95.Hybris.Plugin.
Write-up by: Cary Ng and Peter Ferrie

Southern Illinois University School of Medicine-Springfield, IL has
recently hired R. Stanley Burns as director of the Parkinson Center and
Movement Disorders.
Dr. Burns comes to us as from being the Chief of Movement Disorders and
Associate Professor of neurology at Vanderbilt University School of
Medicine in Nashville.
Did anyone in this group have an opportunity to see him when he was at
Vanderbilt?

Concerning stem cell research you can get an e-mail message to Secretary
Tommy G Thompson -- hhsmail@...
Hope this helps.

Mary Ann,
When we are here on the list, yes it is fair to assume they are just misspelling
and Midodrine is the brand name. There are only the two meds for raising BP at
this time - the other is florinef.
The other medicine mentioned (yohimbine) in the last few days has some serious
side effects especially for MSA patients. Many MSA patients take MAO inhibiters
and/or SSRI antidepressants (Zoloft, trazadone, etc) so read this carefully:
Consult your doctor for specific advice if you are taking
antidepressants (especially MAO inhibitors) or any other mood-modifying
medications, including selective serotonin reuptake inhib-itors (SSRIs), such as
fluoxetine. Before you take yohimbine, tell your doctor if you are taking any
other prescription or over-the-counter drugs, especially cold remedies or
weight-loss aids.
Another problem with yohimbine for MSA patients is that it can cause rapid heart
beat, which the disorder can also produce. If you are taking yohimbine, your
doctor should also be checking you regualrly for liver problems. All in all, it
does not sound ideal for MSA patients and is primarily a male erectile
dysfunction (impotence), over the counter medicine. I would certainly make sure
my doctor was monitoring my liver function as other MSA meds affect liver
function also.
Take care, Bill and Charlotte
========================================================

Dear Kathy,
I have been part of this group for a year, but rarely participate. I
too receive much information, but have little to share. The empathy and
understanding is the major purpose of our existence, we are great because of
our numbers. I am glad you shared your angst, please remain. Joan and
Tom in Seattle

Steve:
My husband did have the "balloon" on his elbows several times -- as I
recall, it was nothing to worry about, and eventually went away. Can't
recall what the doctor called it, but it was just fluid, not painful. If
he fell and bumped the elbow, it did swell up again, but caused no problems.
-- Grace