Nothin' good ever came outta Texas.
Here's a true story:
About ten years ago I spotted a pick emup truck in a parking
lot here in Greenbelt, MD. It had Texas license plates on it
and also a bumper sticker that said:
"If you ain't from Texas, you ain't shit!"
I suppose they _were_ from Texas so...
Doug
Mine is A+
http://www.foxnews.com/national/021401/kourni.sml
--
"The most valuable thing in the world is the truth; in fact it is so
valuable
that it is often defended by a bodyguard of lies." Winston Churchill.
My chiropractor here in Arlington is Jeff Pedersen. Any chance he might
be a relative? I think he is from Iowa.
Barb
--
"The most valuable thing in the world is the truth; in fact it is so
valuable
that it is often defended by a bodyguard of lies." Winston Churchill.
Celeste,
Rob's blood type is AB+.
Carol & Rob
We have a MSA Support Group that meets the second Thursday of each month. We
usually have a speaker every other month. For more information call Ginny at
952-953-0505 or e-mail vober123@AOL .com or call Pauline at 651-552-8624.
Celeste,
We did this survey before and there were all blood type represented. We have
neve fond any common bond with even a majority of the list members. Tried
petroleum products, carbon monoxide, pesticides, paints, agent orange, heavy
metals and many, many others.
Take care, Bill and Charlotte
Dawn & I are brainstorming. Since all the genetic implications, do
others with MSA or related diseases have A- blood like me, just
curious?
Mini Survey
Celeste
Hmmm... I think the gauntlet has just been thrown down... wonder what Bill will
say to this! LOL!
-Greeting John
I think you might remember they think a 2 year overdose of Hormones of
estrogen and testosterone is what triggered my MSA. I wish I could
find the article on exactly which hormones control III/IV stages if
sleep before I see the sleep specialist tommorow.
If you happen to locate it John, please send it my way!
thanks
Celeste
Pamela Womack
Professor of Developmental Studies
Tomball College
30555 Tomball Parkway
Tomball, TX 77375-4036
(281) 351 - 3345
pamela.womack@...
Bill wrote:
"Now in this area, pedestrians always have the right of way over
autos (or even limos). So don't yawl come here and shoot our pedestrians
for walking in front of your limo (or we'll throw your butt in jail) :o)
I know yawl down south shoot people for cutting you off in traffic (at least
40 year old ladies do), but we do not allow open season on pedestrians here.
Well Bill, some of your points are well taken, but please check
your Texas Dictionary as 'yawl' is not a real word. Also, there are few
real Texans who would use the phrase 'throw your butt in jail' as we are
more accustomed to a slightly shorter word to refer to that particular
portion of the anatomy.
However, y'all go ahead and say it however y'all want to. We
Texans are liable to take offense at your mockery, but we're not fixin to do
anything about it because we might have to leave our great state to find
you, and who would willingly leave the Lone Star? (Besides some football
players).
So long from blue skies and 74 degree sunshine!
Pam Womack
Jean,
The whistles may be better than the intercoms. By using the whistle, your
Dad is getting some breathing exercise. Neat idea.
God bless,
Jim Stark
Hi All,
I picked up the attached article from the Internet today. I thought it interesting since there have been no definite markers for MSA.
God Bless,
Jim Stark
Hello! diane has just sent you a greeting card from Bluemountain.com.
You can pick up your personal message here:
http://www7.bluemountain.com/cards/boxg224256e4/wxpuwhejydrbsx.html
Your card will be available for the next 90 days
This service is 100% FREE! :) Have a good day and have fun!
John, thanks, I needed that!!!! I've been in a valley, ever since Al had the
choke emergency on Dec.31st. Doing quite well now. But I too, have a problem
with worrying about what may lie ahead of us. You said it so inspiringly,
LIVE & ENJOY what we have today!! Take care, and, please know you made a
difference here! Pat In OKC
Here's more on the Human Genome project:
http://www.sciencemag.org/genome2001/
Hugs,
Pam
Jean,
That is a good exercise for him also (breathing). However, in later stages he
will not be able to blow it all the time, especially if he is having problems
breathing. Best to have a backup.
NOTE: if you locate the base unit of a cordless phone next to the patient and
carry the hand unit with you, the patient can push to finder button to let you
know they need you. Most cordless phones also have an intercom between the base
and hand units. We got a 900mhz unit for $19.95 with both features (doesn't
work
when power is out :o) The 900 mhz units are good for about 200 feet.
Take care, Bill and CHarlotte
Hi all,
The human genome is now online at:
http://www.ncbi.nlm.nih.gov/genome/guide/human/
There is some stuff that is readable to lay people along with it. There is also
some info on identified disease genes.
Take care Bill and Charlotte
When my dad needs help he blows a big red whistle clipped on a long sports
keychain. We have one in the bathroom attached to the stability bars, one
next to the couch where he stays most of the time, and one by the bed. When
he blows that whistle my mom knows that he needs help. (or just needs to be
entertained) It is not as fancy as a paging box but it works.
Jean (PHX)
Hi All,
I received this alert this morning and thought I had better pass it along.
****** VIRUS ALERT - VBS/SST@MM (AnnaKournikova Virus) *****
Dear McAfee.com Dispatch Subscriber:
VBS/SST@MM or the AnnaKournikova Virus is spread via email in
Windows Outlook. McAfee AVERT has given it a risk assessment
of HIGH-RISK. The email comes with an attachment named
AnnaKournikova.jpg.vbs. You may receive the infected email
from addresses that you recognize in this format:
Subject: Here you have, ;o)
Body:
Hi: Check This!
Attachment: AnnaKournikova.jpg.vbs
If you run AnnaKournikova.jpg.vbs, the script copies itself
to the WINDOWS directory as "AnnaKournikova.jpg.vbs" and
creates a registry key and key values. Subsequently, it
forwards a copy of itself to everyone in your Outlook email
address book.
Please do not run the attachment.
--McAfee.com
This Virus Alert has been issued by the
McAfee Anti-Virus Emergency Response Team (AVER
Trademarks 2001 McAfee.com Corporation / All Rights Reserved.
God Bless,
Jim Stark
Hello everyone,
We wish you a Happy Valentines Day.
Jack & Patricia
http://www.guardian.co.uk/internetnews/story/0,7369,437652,00.html
--
"The most valuable thing in the world is the truth; in fact it is so
valuable
that it is often defended by a bodyguard of lies." Winston Churchill.
Bet when he got there the Jag was gone.....
Thank you for sharing your journey with us. My father has had
many of these symptoms for a while. A neurologist trying to rule
out a brain tumour said that my dad was fine. He did not address
his difficulty walking, his slurred speech, his inability to write, his
incontinence, his vision problems and more. Hard to believe! My
mother's dental hygienist suggested that he might have OPCA.
So I looked it up on the Internet and discovered that all my dad's
seemingly unrelated symptoms had one cause!!! This gave us
the determination to seek another opinion from another
neurologist. Luckily a friend was a receptionist for a doctor
specializing in movement disorders and we got an appointment
with him right away. Indeed he had OPCA symptoms and it now
appears that he has Shy Drager Syndrome... Is it common for
these 2 conditions to be together? What is the difference? I know
that they are both considered to be part of MSA.
I have just discovered this group and am grateful for the
information.
Joanne
Several years ago he was diagnosed with Parkinson's, as was
either his father or grandfather some time before that. When
he later developed orthostatic hypotension he was rediagnosed
with SDS instead of Parkinson's. Later he was diagnosed with
diabetes instead of SDS. What has not been clear is if he is
now diagnosed with diabetes alone, or with diabetes and Parkinson's
though I think just the former.
It doesn make you wonder about his doctors and how well he cooperates
with them.
Doug in Greenbelt, MD USA
John,
Would you happen to know what hormones are involved in the III/IV sleep
stages?
Thanks,
cindy
Hi Barbara,
Let me know where exactly you are in Illinois and I'll see if there are
others near you.
Hugs,
Pam
woodford wrote:
Group therapy would be hard because we live in a pretty isolated location.
Thanks, Debbie. We're hopeful but not overly
optimistic. I'll let you know.
Melanie
So, are you saying that if he doesn't notice a
difference, his dosage should be increased? How long
should we wait before requesting an increase? Also,
are you aware of side effects?
My parents are from a different generation. I can't
relate at all. :-) They don't feel like they should
question doctors because they are the authority
figures in this situation. They feel that "Dr. knows
best" and that if they need to know something more,
he'll tell them. I just can't accept that. I'm much
more proactive. That's why I'm trying to find out all
I can about MSA. My dad's local Dr. didn't even
mention Baclofen to him. I'm the one who told my
father about it. He printed out my email and took it
to the Dr. asking if this might work for him. Isn't
that funny? The Dr. was willing to try it, but I'm
guessing wouldn't have offered it if I hadn't made my
father aware. My sister thinks I should just take over
the medical care of my dad and have her friend who is
a GP write prescriptions for him based on my research.
Of course, she's not serious, but it's a thought! I
think I know more already than many Drs, thanks to you
and the other wonderful folks here.
I don't recall whether or not you felt Baclofen helped
Charlotte.
Melanie
Pam,
I have not heard of diabetes causing so much pneumonia, but we have heard of MSA
causing it..
Take care Bill and Charlotte
==================================
I just read in my local newspaper that Johnny Cash was in hospital again
with pneumonia. Can anyone from Tennessee confirm this?
He was diagnosed with ShyDrager in 1997 but later told by doctors that
this was a misdiagnosis.
Hugs,
Pam
They start slow and work up to the dose you need.
Take care, Bill and Charlotte
================================
Click here: NPF / Products of Interest
Hi All!
My father is going to ask the Dr. today about Baclofen
for his dystonia. Does anyone know what dosage is
usually given for MSA patients? My mom and I are
trying to keep a list of all his meds, how much he
takes, etc. Just want to be sure he is on the right
track with this new one.
Thanks!
Hi,
Have you tried any of the products for skin and hair that contain tea tree
oil? It's possible those might help. Smiles and hugs, Diane
Suzanne:
One of the problems with this disease is that when the patient really
needs help, he can't push the button. Whenever ken has been hospitalized, he
has been unable to call the nurse. Some of the people on this list have used
a baby monitor that you can get at any baby department. The caregiver can
keep one with her and leave the other by the patient. Chances are that if the
patient moves around, the caregiver will hear it.
Barbara Smith
Hi all:
Besides scratching it..... Mother's scalp itches, so we use Head and
Shoulders Shampoo. I just picked some Scalpason for her head. One of her
Dr's. said the itching is caused because of the medication she is taking. He
is the one who suggested Head and Shoulders Shampoo. Now she has been
complaining of her neck and chest including her breast itching. Mother can
not reach up with and scratch herself. She really doesn't want anyone
putting ointment or lotion on her breast. Honestly she told me that today!
Any ideas group? I think she is ok with me doing it for her. Just not
everybody. What are the rest of you using for the itches?
Mary Ann-
Dear Judy and John and all,
Thanks for your words. John, I put your message into my SDS file, which
contains important tips I've gleaned from this group. I'm sure I'll go
back and read it often.
To answer a couple of things. Chuck is taking Paxil, an antidepressant
recently prescribed and it seems to help him sleep and to decrease a bit
his anxiety during the day. It has been working pretty well, no side
effects as with Remeron that he tried first. I already take Zoloft as I
have been taking it for years, at small doses. I guess I might increase
it.
Group therapy would be hard because we live in a pretty isolated
location. And Chuck does not DO groups. I do, however, have done for a
long time. So I know that I have a need now to share my feelings.
Chuck does not have signs of sleep apnea, thank goodness. He used to get
violent in his sleep but does not much anymore. Of course he has to get
up frequently for the diarrhea and for urination, but at least he gets
back to sleep better with the Paxil.
Yes, I tend to get annoyed with the disease and wish things were
different (health), but I sit and look at Chuck across the table and
think of my life-long friend whose husband died last year of cancer, and
think that I'm lucky to still have this person across the table from me.
Thanks again,
Barbara in the wilds of Illinois
In the Texas pun the other day, there was a reference to all the killings and muggings in Washington, DC. Just want to clarify a few recent shootings here.
The shooter and his gun at the White House the other day was from Indiana.
The killer and gun who shot up the DC streets after the All-star game (and the limo he came to DC in) was from Georgia. He even shot one of his own friends (from Stone Mountain, GA) in the limo.
Now in this area, pedestrians always have the right of way over autos (or even limos). So don't yawl come here and shoot our pedestrians for walking in front of your limo (or we'll throw your butt in jail) :o) I know yawl down south shoot people for cutting you off in traffic (at least 40 year old ladies do), but we do not allow open season on pedestrians here.
[INLINE]
:o) Take care, Bill and Charlotte
Gene therapy reverses aging of brain in monkeys
By Emma Patten-Hitt
NEW YORK, Feb 12 (Reuters Health) - Gene therapy with a
substance called nerve growth factor (NGF) can help
restore connections between brain cells that deteriorate
with aging, according to new research in monkeys. The
findings support the idea that gene therapy could be a
useful treatment for conditions like Alzheimer's disease.
"Although degeneration of the brain does occur with aging,
these events were reversible using growth factor gene
therapy in the brain region that we studied," Dr. M. H.
Tuszynski, from the University of California, San Diego,
told
Reuters Health.
He pointed out that "since we are studying monkeys, the
closest animal model to humans that can be readily
studied,
these findings are likely to be relevant to aging
processes
that occur in the human brain."
Tuszynski's team studied rhesus monkeys ranging in age
from 22 to 27.5 years, which are comparable to humans in
their 60s. Some of the monkeys received a brain graft of
genetically engineered cells that produced NGF. The
investigators found that the monkeys that received NGF
exhibited a "substantial and significant" reversal of
age-related declines in the number of connections between
brain cells, called axons.
After the treatment, the density of axons was equal to
that of
healthy monkeys aged about 9.5 years, comparable to
20-year-old humans.
"These connections are needed for the brain to function
normally, so their loss may be a mechanism that accounts
for some of the loss of higher cognitive (intellectual)
function
that occurs in aging," Tuszynski explained.
Another finding of the study was that the gene therapy was
performed deep in the brain, yet it had a beneficial
effect
some distance away near the surface of the brain. "Broad
effects of growth factor gene therapy can occur after a
local
application to a relatively small region of the brain,"
Tuszynski said. "This is a practical issue for the
transfer of
this technique as a therapy for human disease," he added.
"In future studies we will see if this therapy improves
memory or other forms of cognitive function in aged
monkeys," Tuszynski noted.
A human clinical trial is under way to determine if growth
factor gene therapy will reduce the rate of mental decline
in
people with Alzheimer's disease. So far, two patients have
been enrolled in the trial, according to a statement from
the
University of California, San Diego.
In the trial, people will have skin cells taken and
modified to
produce NGF. These cells will then be transplanted in the
brain, and the participants will be followed for 18 months
to
see the effects of the transplant.
SOURCE: Proceedings of the National Academy of
Sciences February 13, 2001.
© 2001, Reuters Health Information Services
Ok! I've been gone way to long when You can get chocolate past me.
Kathy just wanted you to know that there is along list of Choco-lic
here on the group. We've all put in our chocolate recipes. Sally has
her Mississippi Mud Pie recipe along with along list of brownies
recipes And Anne got a contest going. We had alot of fun with that. I
put one in for a brownie, but we went around with that one, it had
the four letter word in it and I tolded Bill I would never use that
word again or he could beat me with a wet noodle. I do have a new
chocolate recipe I got, but it does have the four letter word, so I
haven't put it in, but what the hey, I will give it to you anyway.
Sorry Bill, but I just wrote it down the way it was given to me and
it does have the four letter word CUBE of butter, not stick. Sorry
but couldn't help myself. Anyway it's for a Chocolate Dessert . I
haven't tried to make it yet, but from what I hear it's one that is a
hit at the christmas party'.
Chocolate Dessert
Crust
1 cup flour
1 cup chop pecans
1 cube Butter or maragine cutup (couldn't help myself , really)
(or 16 Tbs for those who don't use the word CUBE)
combine & press into 9x13 pan bake at 350 for 15 to 20 min.cool.
1st filling
8oz cream cheese
1 cup sugar
1/2 of a large cool whip (12 oz)
combine , beat till smooth & spead on crust
2nd filling
1 large instant vanilla pudding
1 large instand chocolate pudding
Beat together according to package. Pour over the 1st filling
Spread remaining cool whip over chocolate layer and sprinkle with
pecans on top. Cool 6 to 8 hrs
Double for lasagna pans.
So there it is , I know I said that word, but what can I say. I am
weak from not enough sleep. Right?
Hugs Vera
Hello Everyone:
I know I haven't been on forever, but I've been spending my time in
the hostipal ER room on the weekends now. Heather one night for her
ears, and Fred the next because he fell and landed on his back.
Scared Heather, she tried to get him to talk to her and he wouldn't.
I took him to get xrays, no breaks thank God. Having a time getting
him to use his walker or cane. The doctor told him needs to use them,
but you know Fred. Anyway just checking in from California where it's
has quakes, rain, hail, and who knows what else before the night is
over.
Oh! what a night .
Vera
I found using a Fisher-Price baby monitor easiest - Jim didn't have to do
anything but talk - or make any noise and I was there like a shot. We also
discovered that if you dial your own phone number and then hang up, the
phone will ring. I programmed our number on the phone next to the bed and
if Jim needed me he'd just hit one button and then press the off button
(cordless phone) I'd answer, so the phone would stop ringing and then he'd
just push the 'on' button to talk to me.
Hugs,
Nan
Caution.
Watch that diarrhea. We were luled into complacency thinking that the
diarrhea meant that he was having more than enough bowel movements. Now we
see that it can be a sign of a bowel impaction. We had a big one in August.
He spent over week in hospital in a town 5 hours away. then we had to get
home. We are now dealing with another impaction. So we now know to be
very careful and don't let the diarrhea lull us into being complacent. We
hope that we will be more alert in future.
You might need to see a gastro doctor to be sure.
Marilyn in TN
This one wreaked havoc with our computer network at the county today! and someone sent it to me at home, but my email server caught it before it got to me. Beware!
Nan
http://www.washingtonpost.com/wp-srv/aponline/20010212/aponline160315_001.htm
--
"The most valuable thing in the world is the truth; in fact it is so
valuable
that it is often defended by a bodyguard of lies." Winston Churchill.
Greetings Barbara!
This is definitely a place to come to express your frustration and
depression. You are certainly not alone. You might also want to find a
support group in your area. It might not be an MSA support group, but other
patients and caregivers with similar neurological conditions face similar
problems. Both you and Chuck need the chance to share your experience.
As to the experience, some of us are farther along the way with this
particular Journey, but each of us is often overwhelmed .. no matter where
we are along this path. But by sharing and talking it through we usually
find the strength to forge forward.
There is never a good time. Would it have been better before retirement?
We don't control the hand we are dealt. But we can control how we act and
react to it. Forutnately, you are willing to admit that it's a raw deal.
Facing it, admiting it, and talking it through with others helps you make
the best of it.
Is Chuck sleeping well? Is he snoring heavily? Does he sometimes stop
breathing or awaken gasping? Does he have acid reflux while sleeping? Does
he often awaken to urinate?
If yes to any of these, he may need to see a sleep specialist. It's much
easier to deal with any chronic illness if you are well rested.
Except for the weaker voice, I sure understand the situation. I wish I had
any real answers. Only thing I might offer is to continue to work on
balance.
Make it fun. I enjoy walking with my dog. We romp in the house and yard.
I am often very dizzy doing this. The dizzier, the less I actually move.
But there is little doubt the constant practice helps me maintain my
balance. Prior to starting this, I was getting very unstable. It's not
stopped it. But it does seem that I am adjusting as a result of frequent
attempts to practice my balance.
Then don't. Take each day, one at a time. Live in the NOW! Enjoy NOW!
Rejoice together in life. Or as the very old phrase goes "Carpe Diem!"
There is much the two of you can do and enjoy. Do so. Don't borrow
trouble, since there is no 'set' progression of this disorder.
And yes, I really do know this is much easier said than done. I know very
well. We can just keep on trying.
But do NOT think you can't come to express your thoughts. Please do. It
will help both of you. You are not alone. We all need to do that.
Regards,
=jbf=
John B. Fisher
Judy:
Wonderful!!! Thank you so much. I'll track it down at Penny's.
Suzanne Grimmesey-Kirk, MFT
Quality Care Management
Voice: 884-1647
FAX: 884-1633
Hi Suzanne,
I just got a Personal Pager for Mark from Penny's. I ordered it over the Web
site and it's just called the Personal Pager. I think it was around $59.95
and well worth the money. We've only had it a couple of weeks but use it all
the time. It has a radius of about 100 feet and even works while I'm out in
the yard and Mark's in the house. Mark has trouble reaching, holding on to,
and is so clumsy that everything I left for him to use to get me at night he
either dropped or lost in his covers. This can be worn around the neck but
Mark can't do that due to the trach so I slip it over the trapeze that hangs
above his head and it's long enough to lay right beside his pillow for easy
access. Mark uses his during the night when he needs suctioned or if I'm at
the computer and he's in bed.
Hope this helps.
Take Care
Judy Whittaker
Hi Suzanne,
I just got a Personal Pager for Mark from Penny's. I ordered it over the Web
site and it's just called the Personal Pager. I think it was around $59.95
and well worth the money. We've only had it a couple of weeks but use it all
the time. It has a radius of about 100 feet and even works while I'm out in
the yard and Mark's in the house. Mark has trouble reaching, holding on to,
and is so clumsy that everything I left for him to use to get me at night he
either dropped or lost in his covers. This can be worn around the neck but
Mark can't do that due to the trach so I slip it over the trapeze that hangs
above his head and it's long enough to lay right beside his pillow for easy
access. Mark uses his during the night when he needs suctioned or if I'm at
the computer and he's in bed.
Hope this helps.
Take Care
Judy Whittaker
Hi Barbara,
You might think about talking to your Doctor about an anxiety drug. I put it
off for way too long and last July my Doctor suggested I take Zoloft for
"situation anxiety", she had a patient a few years ago that had MSA and knew
the trials of caregiving. I hesitated at first but now I'm glad I'm taking
it. I used to bite off 8 heads at work everyday, now I can only manage about
2! Makes life with Mark easier too. Mark also takes Zoloft but about 3
times the dose I take. I couldn't even tell that I was taking it but my
attitude does seem better. I have a wonderful Doctor and she has been asking
me for the past 3 years if I thought I was suffering from TOO much
caregiving, I didn't think I was but I must have been.
Hope this helps, take care,
Judy Whittaker
HI all,
My husband, Chuck, is always colder than I am, and several times has
awakened shivering uncontrollably in a relatively warm bedroom. The
interesting thing is that he has also awakened sweating with his whole pj
top soaked when he was in a bedroom with a heating vaporizer, which made
the room pretty warm (in my opinion). I guess that's all in concert with
the lack of normal bodily thermostatic function.
I know you all have had so much more experience than I have had so far,
but I am getting a bit depressed at having to handle so many things
myself ( although I have always had to do that, due to my husband's
traveling schedules). I didn't expect it now, during retirement. So far
he's doing pretty well, just getting more tired and more tired, voice
weaker, more dizzy, and the constant diarrhea. I know this is early
stages and I can't imagine the rest.
Barbara from Illinois
Barb:
Great ideas. Thank you so much. Which would you say is the easiest to
manipulate (for the patient)?
Suzanne Grimmesey-Kirk, MFT
Quality Care Management
Voice: 884-1647
FAX: 884-1633
Hi Just read your note.
I have a wireless door bell that we used when Ralph was ill. Bought it
at K Mart Works for at least 50 feet.
Radio Shack also has a intercom that has two boxes, you can always add
another one. I have four that work together.
Just plug them in in the room you need them to be in.
I have had mine for a while but they are not very expensive.
There is also one that has a remote that you can use in the yard, The
base is kept by the patient
Barb in Arlington
--
"The most valuable thing in the world is the truth; in fact it is so
valuable
that it is often defended by a bodyguard of lies." Winston Churchill.
To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com
Hi Just read your note.
I have a wireless door bell that we used when Ralph was ill. Bought it
at K Mart Works for at least 50 feet.
Radio Shack also has a intercom that has two boxes, you can always add
another one. I have four that work together.
Just plug them in in the room you need them to be in.
I have had mine for a while but they are not very expensive.
There is also one that has a remote that you can use in the yard, The
base is kept by the patient
Barb in Arlington
--
"The most valuable thing in the world is the truth; in fact it is so
valuable
that it is often defended by a bodyguard of lies." Winston Churchill.
Several weeks ago someone mentioned a very good idea. Someone shared having a
paging box whereby their loved one with MSA could push a button and it would
page the caregiver who was elsewhere in the house. I believe this was reference
in regards to sleep and it being easier to sleep in another room with this as a
manner to communicate with any needs.
I can not seem to locate where to purchase this pager box. If anyone has any
information, I would appreciate it. Thank you.
Suzanne Grimmesey-Kirk, MFT
Quality Care Management
Voice: 884-1647
FAX: 884-1633
Ruth,
You have to tell Roy that if he injures himself too badly, he wil end up in a
nursing home as ouwill not be able to take care of him. No MSA patient should
be using a powersaw!!! Your reaction time is down and you could easily lose
finger or even a hand. Don't ruin your health if he is totally uncooperative.
Let him try a nursing home for a few weeks and he will be GLAD to be back home
and listen.
On the BP machine, try moving the cuff slightly if you get an error message.
Take care, Bill and Charlotte
Greetings!
You noted "just needed to share my feelings on today".
Know that we are glad you did. It can be very hard to watch a loved one
suffer. Your father shows great courage and strength of character to
continue to try, regardless of his situation. Rejoice in his courage. And
always, always know that you are not alone.
Regards,
=jbf=
John B. Fisher
Hi everyone,
My neighbor's doctor taught her to make lotion from one-half jar of vaseline, one large bottle of baby lotion and one jar of vitamin E cream. Mix all three together and it makes a wonderful cream for dry skin. My hands stay red and rough all the time and I have never been able to buy lotion that worked. This stuff does. I thought that the vaseline would make it real greasie but it doesn't. I have started using it on Dave's feet and legs, he loves it.
I know a lot of you suffer from dry skin, hope this works for you.
Take care, Kathy
Hi all,
Here are two article which may be of interest. One about healing skin and one
about sour oranes interferring with meds.
Take care, Bill and Charlotte
Ah yes. Ah Texas. The comment about J. Frank Dobie (see below) brought
back memories, back when I was going to school in San Antonio and Lyndon B.
was president and Texas was the center of the world. There was a magazine
called the Texas Observer then. Last I checked there still is. However the
issue I picked up recently seemed much more gentrified. Back in Johnson's
time it had a cheap paper cover and was printed on newsprint. It wasn't
afraid of anyone, least of all a Texas politician, even if he was president.
The magazine was edited by a group of damned liberals who had graduated from
UT Austin. Their heros were the founding fathers of Texas literature
including J. Frank Dobie, Roy Bedecheck, and a third person whose name my
age forgets. J. Frank Dobie taught at UT and encouraged the students to
look within themselves and Texas history to find the themes for their
writing. None of that Eastern angst for them. His great work was the
Mustangs. At the start of WWII he was in London and lectured there using
themes from that work. He developed friends for the US and Texas and the
English recognized the sweep of his work. People tell stories about one of
the others- I think it was RB - in cowboy hat and boots, riding in a rusted
pickup across West Texas and late a night, under the bright Texas stars,
reading Homer in the original Greek by the lights of the truck.
Mr. Dobie had a ranch near Austin then. It was called Paisano or "fellow
countryman" - the name given by the Mexicans to the road runner. Somehow
the speedy, tough birds looked like they belonged on the dry Texas
landscape. J. Frank and his friends were known to drink bourbon and branch
water and talk late into the evenings occasionally inviting students to join
in. He willed his personal library to the University of Texas when he died.
Some years after he passed I visited the UT undergraduate library and
wandered to the fourth floor, home of the Dobie Library. I went through
many of his books. In the front of each was a small, two inch by two inch
sticker engraved with a road runner. J. Frank Dobie had printed them to
mark his personal books. About half way through one of the books I found
one of the stickers loose. Apparently he had been using it to keep his
place while reading the book. I carefully put it back into the book in the
same place and put the book back on the self. Even today I think I should
have taken that sticker with me.
Peg and Jim Taylor from Guam
Frank Dobie.) We are also better educated and generally a lot nicer than
you. Don't refer to us as a bunch of cowboy hicks, or we'll kick your ass.
********************************
*** Peg & Jim Taylor
*** # 29 Cruz Heights
*** Ipan-Talofofo, Guam 96930-4736
*** USA
*** 671-789-2307
*** Note: Guam is 15 hours ahead of
*** Eastern Standard Time (EST).
*** 14 ahead of EDT.
********************************
Thanks for the info, Bill. I know that cord blood is
already being used as a treatment for some types of
leukemia. A little girl in our church had a cord blood
transplant to treat her leukemia. I just didn't know
if cord blood could some day be used to treat
conditions like MSA.
Melanie
Danielle and Melanie,
Researchers are currently thinking that it would be a good idea to save and
freeze leftover umbilical cord for possible later use by the person born with
it. There is no definite defined use for it at this time as far as I know.
Basically that is the same as adult stem cells. They have a definite person's
programming at that time as far as I know. Whereas the pluripotent stem cells
are not programmed to become a specific person or even a specific cell in a
person.
The "morality" debate is also a question of ethics. Opponents keep saying that
the research will "kill" possible humans, when in actuallity, the cells will
live on and hopefully cure someone. Actually the cells will be destroyed if
they are not used. So the "killing" reference is a lie and therefore not an
ethical argument. Opponents also sit growing human body parts for sale - the
parts to be grown are microscopic cells and are to be transfused or implanted
into humans to repair or replace damaged cells in the body.
There are no experiments that I know of aimed at growing new hands, hearts, etc.
outside the body and transplanting the whole limb or organs. That would take us
to learn the complete makeup of every cell in a limb and also how to make all
those cells assemble themselves in an orderly fashion. They have tried to get
the blastocysts to grow further outside the womb in order to give the mother a
beter chane t fertilization, but found that the blastocyst will not develop into
a fetus without being in a womb by about the 4th day. The womb has to program
the cells to form a fetus (and possibly even a true embryo).
So why are politicians claiming "ethics" and lying to stress untrue myths? It
could be ignorance. Or it could be to ward off criticism that they intend to do
nothing about actual abortion and still want an "abortion" stance. Abortion is
the removal of a fertilized egg from the mother. These eggs were removed from
the mother before they were fertilized and are now in test tubes frozen. They
are NOT growing at this time and would have to be placed in a womb to grow.
Some of them are eggs of women who have since died and the heirs want them used
for research.
So when someone tells you that it is "ethically" wrong to use these cells for
research, ask them if it is wrong to destroy the cells. If they say yes, ask
then how tranplanting the cells will kill them. Remind them that the "embryos"
will be destroyed if not used. The cells will do no one any good if they are
destroyed. The cells will help people if they live on in another person and
keep them alive or give them a cure. They can NOT ethically use the argument
that the research "kills" the human cells.
The only cells that have shown promise in curing brain disorders and healing cut
nerves are the pluripotent stem cells. That is why people like Christopher
Reeves and Michael J. Fox are so enthused about this research. That is why
several intelligent Republican Senators are pushing for the research.
Take care, Bill and Charlotte
It is experimental. Debbie
I was wondering the same thing.
Melanie
Mary,
Welcome to the group. I'm sorry you have to be here.
My father was recently diagnosed with MSA. I don't
know much, but I'm learning. I know I have seen
several posts about donating to research, but I can't
give you any specifics. Maybe Pam or Bill can help?
I think you'll find this group very helpful and
supportive.
Melanie in OK
boy what a mess i was told the chat room was closed by the host
--
"The most valuable thing in the world is the truth; in fact it is so
valuable
that it is often defended by a bodyguard of lies." Winston Churchill.
In a message dated 2/11/01 9:50:44 AM Eastern Standard Time,
pbower@... writes:
both addresses would not let me in .....sorry pam...tried tom
Like it or not, the new Texas White House will be in Crawford, Texas, and
soon will be drawing a number of people to the state, including many who are
not used to Texas ways. They might find the following advice useful.
1) Don't expect to find filet mignon or pasta primavera at the local
restaurant. It's a cafe. They serve hamburgers and chicken fried steak. Let
them cook something they know. If you confuse them, they'll kick your ass.
2) Don't laugh at the names (Merleen, Bodie, Bubba, Bobby Ray, Curley, Tammy
Lynn, Billy Joe, Sissy, Clovis, etc.). Or we will HAVE to kick your ass.
3) Don't order a bottle of pop or a can of soda. In Texas it's called a
coke. Nobody gives a damn whether it's Pepsi, RC, Dr. Pepper, 7-Up or
whatever - it's still a coke. Accept it. Doing otherwise can lead to an ass
kicking.
4) We know our heritage. Most of us are more literate than you (read some J.
Frank Dobie.) We are also better educated and generally a lot nicer than
you. Don't refer to us as a bunch of cowboy hicks, or we'll kick your ass.
5) We have plenty of business sense (e.g., Howard Hughes, H. Ross Perot,
Southwest Airlines, Dell computers.) Naturally, sometimes we have small
lapses in judgment (e.g., Phil Gramm.) However, we are not dumb enough to
let someone move to our state just so they can run for the US Senate. If
anyone tried to do that they would get a serious ass kickin'.
6) Don't laugh at our Civil War monuments. If Lee had listened to Gen.
Hood, you'd be paying taxes to Richmond instead of Washington. If you visit
the Alamo, take your hat off and be properly humble, or we'll kick your ass.
7) We are fully aware of how hot it gets and high the humidity is, so shut
up about it. If you can't stand the heat get out of the kitchen, or we'll
kick your ass.
8) Do not attempt to eat tamales without first removing their corn husk
casing. Everyone will instantly know that you're a Yankee. DO NOT, under any
circumstances, complain that the chili is TOO hot or contains no kidney
beans - this will get your ass kicked into next week.
9) Don't talk about how much better things are at home because we know they
are not. Many of us have visited Northern hell-holes like Detroit, Chicago,
and DC, and we have the scars to prove it. If you don't like it here, Delta
is ready when you are. Move your ass on home - before we kick it.
10) Yes, we know how to speak proper English. We talk this way because we
don't want to sound like you. We don't care if you don't understand what we
are saying. All other Texans understand what we are saying and that's all
that matters. Now, go away, or we'll kick your ass.
11) Don't complain that certain areas of this state "smell" of oil. If your
livelihood depended on those wells you'd soon learn to love the aroma.
Besides, none of OUR lakes or rivers have caught fire recently. If you whine
about OUR scenic beauty, we'll kick your ass all the way back to Pittsburgh,
PA.
12) Don't ridicule our Texas manners. We say sir and ma'am. We hold doors
open for others. We offer our seats to old folks. Such things are expected
of civilized people. Behave yourselves around our sweet little gray-haired
grandmothers, or they'll kick your ass-just like they did ours.
13) Don't think we're quaint or losers because most of us live in small
towns. We do this because we have enough sense to not live in crime
infested cesspools like Baltimore. Make fun of our small towns and we'll
kick your ass.
14) DO NOT DARE to tell us how to cook barbecue. This will get your ass
shot (right after it is kicked). Criticize the barbecue and you may go home
in a pine box - minus your ass.
15) Remember, the only reason you are lucky enough to be here in the first
place is because we have not pulled the Border Patrol off the Rio Grande and
put them on the Red River (where they really belong) to keep your ass out.
16) Enjoy your visit.
Hi Barb,
So far, things in northern California are quiet, at least as far as I know.
I take it there was an earthquake at Big Bear? I've been at work all night,
but never felt anything there. Smiles and hugs, Diane
Jim,
That's what I thought, too. I don't know if anyone has
had any luck with it or if it is just experimental. My
father's neurologist at Mayo didn't mention it. I
suspect if it did any good for MSA patients, he would
have had my dad try it. I'll let you know what he
finds out from his Dr.
Melanie in OK
flavors and they do make a differance. Judy
Melanie,
As far as I know, There is nothing that can slow the progress of MSA.
If you find out anything about this treatment, PLEASE, by all means, post a
message hack here as we all are very interested.
God Bless,
Jim Stark
Greetings Celeste!
You noted:
Yup. But the no stage III/IV sleep is a concern, since (as I understand it)
some hormones and neurotransmitters are created during these stages of
sleep.
Medication to help control the legs/limbs. It's pretty effective. If that
helps you feel more rested, great. If not, you might want to ask for
medication to help induce and promote deeper sleep (trazodone or others).
Regards,
=jbf=
John B. Fisher
Hey is the world shaking out in California? I see the Big bear is.
Hang onto the dishes.
Love Barb
--
"The most valuable thing in the world is the truth; in fact it is so
valuable
that it is often defended by a bodyguard of lies." Winston Churchill.
Hi All,
I've seen a few people mention a drug that some MSA
patients have tried that may slow the progress of the
disease. It's something ALS patients use. Can't
remember the name. Can someone help me? Also, does
anyone find it helpful? Does it ever do harm? My dad
was asking me about it. He wants to talk to his
neurologist about it on Monday.
Thanks!
Melanie in OK
Hi Barb,
I know I'm a little slow at trying this, but I'm having a terrible time trying to save this and get it to open for me. I keep getting messages that say the picture may not go through. Am I missing a step in the process or something? Thanks for your help. Smiles and hugs, Diane
For some reason I am having trouble with your address and my mail to you
keeps coming back. I see there have been ample comments regarding sleep
apnea from the list and my tale can add nothing significant.
Keep us posted on things.........Barb Pond in VA.
Hi all,
I heard from Anne this morning. She is doing okay, but will not see the surgeon
again until late March. So she is unhappy about that. They have been busy as
her daughter Maria got a fever from a mosquito, but it was non-contagious.
Anne is starting her next University course on March 5th. Se knows now what
some of the requirements are and is already working on the term paper. Knowing
Anne, she will be busy, so don't expect uch correspondence from her.
Their roads are still ful of potholes from all the excessive rain and bad
weather they had. Anne is also unhappy because it is now hot and sticky summer
again there.
And that's the news from Southport in Oz. Hey Michelle, wot's new on the
Sapphire coast? We went to 68 deg (F) here yesterday then the winds came - I've
got to repair shutters today and find one of my 45 gallon trashcans. Today it's
only in the 40's.
Take care, Bill and Charlotte
Hi All,
I am checking - BUT the message below could be an attempt to get passwords from
your computer - DO NOT CLICK THE LINK !!!!!!!!!
Bill Werre
======================================
avsr1877@... wrote:
Well its back, here is what the report says;
Interpretation:
Sleep Structure: The total sleep time was 203 minutes for an
efficiency of 53%. No deep stage III/IV sleep was recorded. This was
slightly less than minimum sleep needed for completely accurate
interpretation.
Cardiac analysis: No dysrhythmias were recorded
Respiratory Analysis: Throughout the night, there were occasional
disordered breathing events. These were not associated wih
significant nocturnal hypoxemia. DBE per hour was 19.
Periodic leg movements in sleep were seen throughout the night at a
rate of 14 per hour associated with arousals.
Conculsion: Mildly adnormal Overnight Polysomnogram with 1) mild
disordered breathing but without evidence of significant sleep apnea
or nocturnal hypoxemia, 2) sleep mycolonus which did cause sleep
fragmentation throughout the night.
My conclusion is it says restless legs are the problem. I see the
ordering MD this thursday. Does anyone know what he might suggest?
Celeste
Tomorrow (Sunday) I will post them for everyone! Just not feeling well today.
Tim
http://www.plwp.org - People Living with Parkinson's
http://cpwg.tripod.com - Connecticut Parkinson's Working Group
Anne if you are using Outlook Express, go to Edit at the top of the page,
click on it, and the 7th item down says "empty deleted items folder" click
on that to delete your deleted items or you may also you can go to "Tools"
at the top of your screen, click on that, then click on Options. Under
Options click on Maintenance, and the first item says "empty messages from
the deleted folder on exit" Click that and it will automatically delete
them when you sign off.
Bernice
Greetings Marilyn (in TN) !
You wondered:
A CPAP unit provides Continuous Positive Airway Pressure, whereas a BiPAP
provides BiLevel Positive Airway Pressure. Essentially a CPAP unit is a
fancy blower that provides a gentle increase in pressure to 'splint' open
the airway. But the BiPAP unit senses the change in pressure when you
breathe. As the user exhales it drops the pressure to the lower pressure.
This makes it easier for people to exhale.
As my situation progressed, I found CPAP no longer was effective, but my
last sleep study very clearly demonstrated that BiPAP worked much better.
With CPAP my sleep was badly fragmented. I would come out of deeper sleep
for no apparent reason. But with BiPAP, the graph of the sleep cycle looked
fairly normal. So, I now use BiPAP.
As you might guess, BiPAP costs more (twice as much) since it (a) has lower
number of users, and (b) is more complicated inside.
Hope that helps.
Regards,
=jbf=
John B. Fisher
two e-mail adresses avsr1877@... or
vitalonesr@...
Ann,
Bepending on what computer and what software you are using, you may have a
"trash" file. If you are using Netscape in the email portion, on the left of
the screen there is a wire waste basket, if you click on it it will have all
your deleted files (if you have it set that way. It may take several minutes to
load the files if they are compressed. Or if you don't want to keep any
"trashed" files, you can empty the trash file. If all your email is coming from
the list anyway, there is a record of all messages on the egroups website.
Take care Bill and Charlotte
I am sending you a bookmark for a site to check on for some of the
things you might like to know.
http://www.learn.com/
Barb in Texas
I deleted it , but what do you mean about delete the deleted file??
I am so uneducated about the computer tell me what to do.
Ann from Soddy,TN
I thought you might be interested in reading this web page:
http://neuro-mancer.mgh.harvard.edu/ubb/Forum85/HTML/000037.html
Hi everyone:
Speaking from my own experience, not Mothers. Whenever you are prescribed an
antibiotic, delete all or as much as possible the sugars in your diet. Yeast
loves and thrives on sugars!!! In fact to cut back on the possibilities of
getting a yeast infection, cut down on all sweets(if you can). I know this
group has a chocolate thing going on.
I think there could be a weird valentine card here, for all of us who are
weird!!!
PS. Mother didn't make it to her Dr. apt in Mpls.MN on Monday. Both my
sister and I had car trouble. It is rescheduled for Feb. 19th.
Mary Ann-
This is the same news we've seen in two other separate press releases
this past week. This one gives a bit more detail on Dr. Rouault's
research and her quest for MSA patients to study. Please do contact her
if you are interested in participating.
Hugs,
Pam
----
http://www.nih.gov/news/pr/jan2001/nichd-30.htm
NATIONAL INSTITUTES OF HEALTH
National Institute of
Child Health and
Human Development
EMBARGOED FOR RELEASE
Tuesday, January 30, 2001
5:00 p.m. EST
Contact:
Robert Bock
(301) 496-5133
Mouse with Iron Disorder Offers Clues to Parkinson's,
Similar Diseases
Mice engineered to lack a gene involved in iron metabolism may
provide important clues for deciphering the nature of a
group of brain disorders similar to Parkinson's Disease
affecting movement, according to a study by researchers at
the National Institute of Child Health and Human Development
(NICHD).
The researchers reported in the February issue of Nature Genetics
that mice lacking the gene for iron regulatory protein
2 (IRP2) develop iron deposits in key areas of the brain. The
progressive deterioration of the mice's nervous system is
like that seen in people with Parkinson's Disease and Multiple
System Atrophy (also known as Parkinson's Plus).
"Researchers have long debated whether the characteristic iron
deposits of these diseases are the cause or the result of
the disease process," said Duane Alexander, M.D., Director of the
NICHD. "This is a strong clue that iron may play a
causative role in Parkinson's and similar disorders."
Diseases in which excess brain iron has been observed include
Parkinson's Disease, Friedreich's Ataxia and
Hallervorden-Spatz disease. However, the brain areas affected
differ from those in the IRP 2 deficient mice, and it is
unlikely that IRP 2 is involved in these human diseases, said the
study's senior investigator, Tracey A. Rouault, M.D., of
NICHD's Cell Biology and Metabolism Branch. Still, the NICHD
finding suggests that other genes involved in iron
metabolism may be good candidates for investigations into the
causes of these disorders.
In addition, the brain areas affected in the IRP 2 deficient mice
correspond closely to those affected in Multiple System
Atrophy (formerly known as Olivopontocerebellar Atrophy). For this
reason, the NICHD researchers are planning a
study to test patients with this disorder for defects of the IRP2
gene.
IRP 2 is a key player in regulating how much iron is in the cell,
Dr. Rouault explained. Although iron is a nutrient, too
much can also be toxic. For this reason, cells have intricate
biochemical machinery to prevent iron from building up to
lethal levels. Like its sister protein, iron regulatory protein 1,
IRP 2 governs the actions of various other proteins involved
in iron metabolism. These include transferrin receptor, which
transports iron into the cell; ferritin, which stores iron safely
away from the cell's internal machinery; and iron exporters, which
ferry iron out of the cell.
Using a method known as "knockout technology," the researchers
developed a strain of mice lacking the IRP 2 gene.
These mice developed normally at first, then progressively had
difficulty walking and moving. Examination of their brains
showed that tiny clumps of iron accumulate in the cerebellum, the
brain structure controlling movement, and in the basal
ganglia, the group of brain cells atop the spinal cord, which
assist in movement. These mice also had high blood levels of
the iron storage protein ferritin.
"In the corresponding human diseases, you see only the end result,"
Dr. Rouault said. "With these mice, we know that
the primary event is removal of the gene."
Currently, Dr. Rouault is seeking patients with Multiple System
Atrophy to take part in a genetic study to learn whether
they have a genetic defect involving IRP 2. Similarly, she is also
seeking patients with Parkinsonian symptoms for the
study, because Multiple System Atrophy often masquerades as
Parkinson's. Dr. Rouault and her colleagues are
especially interested in seeing patients with these diseases who
have relatives with either disorder and have high blood
levels of ferritin. Those wishing to participate may have their
physicians contact Dr. Rouault at Rouault@... or
write her at the Cell Biology and Metabolism Branch, NICHD, Bldg.
18T, Room 101, Bethesda, MD 20892.
The NICHD is part of the National Institutes of Health, the
biomedical research arm of the Federal government. The
Institute sponsors research on development before and after birth;
maternal, child, and family health; reproductive
biology and population issues; and medical rehabilitation. NICHD
publications, as well as information about the Institute,
are available from the NICHD website, http://www.nichd.nih.gov, or
from the NICHD Clearinghouse,
1-800-370-2943; E-mail NICHDClearinghouse@....
The National Institute of Neurological Disorders and Stroke
provides information on the neurological disorders
mentioned in this release on its website.
Parkinson's Disease
http://www.ninds.nih.gov/health_and_medical/disorders/parkinsons_disease.htm
Multiple system Atrophy (Olivopontocerebellar Atrophy)
http://www.ninds.nih.gov/health_and_medical/disorders/opca_doc.htm
Friedreich's Ataxia
http://www.ninds.nih.gov/health_and_medical/pubs/friedreich_ataxia.htm
Hallervorden-Spatz Disease
http://www.ninds.nih.gov/health_and_medical/disorders/hallervorden.htm
http://www.nih.gov/news/pr/feb2001/niehs-09.htm
NATIONAL INSTITUTES OF HEALTH
National Institute of
Environmental Health Sciences
FOR IMMEDIATE RELEASE
Friday, February 9, 2001
NIEHS
CONTACT: Bill Grigg
(301)
402-3512, (301) 496-3512
Special Session Planned at Society of Toxicology Meeting On the Role of
the Environment in Parkinson's
Disease
While the causes of Parkinson's Disease are not known, recent
experimental and epidemiological evidence of
interactions between environmental exposures and genetic
susceptibility will be presented by speakers at a special
session of the annual Society of Toxicology meeting at the Moscone
Convention Center, San Francisco, March 29 from
1:30 p.m. to 4:30 p.m.
Program Agenda:
Introduction and Welcome, Kenneth Olden, Director, National
Institute of Environmental Health Sciences
Overview: The Role of the Environment in PD, William Langston,
President, Parkinson's Institute
Challenges Identifying Genetic Markers for Susceptibility to
Environmental Risk Factors, Harvey Checkoway, University
of Washington
Environmental Determinants of PD: Studies in Human Populations,
Caroline Tanner, Parkinson's Institute
The Pesticide Rotenone and PD, J. Timothy Greenamyre, Emory
University
The Combined Effects of Agrichemicals on the Risk of PD, Deborah
Cory-Slechta, University of Rochester
Interactions Between Alpha Synuclein and Environmental Agents,
Donato Di Monte, Parkinson's Institute
Discussion of Future Research Opportunities, William Langston -
moderator
Session Chair: Kenneth Olden (NIEHS) and Co-Chair: David P. Brown
(NIEHS)
Hi Becky,
Do you mean "sleep apnea"? Yes this is one symptom that may develop as MSA
progresses. Like many of the other symptoms some develop them sooner than
others and some don't develop them at all. If you suspect you have sleep
problems you should ask to be reassessed by a sleep specialist.
Hugs,
Pam
Hi Itzik,
Dr. Roger Bannister is now retired but there are several of his former colleagues in London who are considered among the world's leading experts on MSA.
Christopher J. Mathias
http://www.specialistinfo.com/cm/mathneur01.html
Nial P. Quinn
http://www.specialistinfo.com/cq/quinneur01.html
C. D. Marsden
http://www.specialistinfo.com/cm/marsneur01.html
I'm not sure what mouse experiment you keep referring to. Was it one that involved spinal cord regeneration?
There is one researcher working in Austria (Gregor Wenning) who is looking for a way to do a nerve transplant in rat models of Multiple System Atrophy. If this is successful they would then have to progress to using a primate model before it could then be used in humans. MSA is especially complex because "multiple" areas of the brain are affected. They may be able to figure out how to fix nerve damage in certain areas but not in others.
Take care,
Pam
----
Towards Neurotransplantation in Multiple System Atrophy: Clinical Rationale,
Pathophysiological Basis, and Preliminary Experimental Evidence
Gregor Karl Wenning,1 Francois Tison,2 Christoph Scherfler,1 Zoe Puschban,1 Regina Waldner,1 Roberta Granata,1
Imad Ghorayeb,2 and Werner Poewe1
1Department of Neurology, University Hospital, A-6020 Innsbruck, Austria
2CNRS-UMR 5543, Universit de Bordeaux 2, Bordeaux, France
Multiple system atrophy (MSA) is a neurodegenerative disorder that occurs sporadically and causes parkinsonism, cerebellar,
autonomic, urinary, and pyramidal dysfunction in many combinations. Progressive L-dopa-unresponsive parkinsonism due to
underlying striatonigral degeneration dominates the clinical syndrome in the majority of cases (MSA-P subtype). MSA-P is
characterized pathologically by degenerative changes in somatotopically related areas of the substantia nigra pars compacta and
of the putamen. Furthermore, oligodendroglial cytoplasmic inclusions (GCIs) are observed throughout the
cortico-striato-pallido-cortical loops and may contribute to the basal ganglia dysfunction. Neurotransplantation strategies are of
potential interest in this disease, which causes marked and early disability and dramatically reduces life expectancy. A number
of experimental MSA-P models have been employed to evaluate neurotransplantation approaches. Sequential nigral and striatal
lesions using 6-hydroxydopamine and quinolinic acid (double toxin-double lesion approach) indicate that apomorphine-induced
contralateral rotation is abolished by a secondary striatal lesion. Intrastriatal injection of mitochondrial respiratory chain toxins
produces secondary excitotoxic striatal lesions combined with retrograde nigral degeneration and therefore provides an
alternative single toxin-double lesion approach. Neurotransplantation in MSA-P animal models has been used to improve
functional deficits by replacing lost nigral and/or striatal circuitry (neuroregenerative approach). The available data indicate that
embryonic mesencephalic grafts alone or combined with striatal grafts partially reverse drug-induced rotation asymmetries
without improving deficits of complex motor function. The potential neuroprotective efficacy of embryonic striatal grafts against
striatal excitotoxicity is presently under investigation in the double toxin-double lesion MSA-P rat model. Anecdotal clinical
evidence in one MSA-P patient misdiagnosed as Parkinson`s disease indicates that embryonic mesencephalic grafts produce
incomplete clinical benefit. Striatal co-grafts may increase functional improvement. Further experimental studies are required
prior to the clinical application of embryonic neurotransplantation in MSA-P. Future research strategies should explore the
effect of neurotransplantation in partial MSA-P rat models with less severe nigral and striatal degeneration, the feasibility of a
primate model closely mimicking the human disease, and the replication of oligodendroglial dysfunction.
Key words: Multiple system atrophy; Neurotransplantation
Address correspondence to Dr. Gregor K. Wenning, Neurological Research Laboratory, Department of Neurology,
University Hospital, Anichstrasse 35, A-6020 Innsbruck, Austria. Tel: 0043 512 504 4292; Fax: 0043 512 504 3852;
E-mail: gregor.wenning@...
Itzik, Riluzole is a drug used for patients with ALS. However, some doctors believe it helps slow down the progress of MSA. My mother Joyce (71, died 11/00) was on it for a few months). She didn't feel a benefit so went off it.
If I remember correctly, it was a few hundred dollars/month (American dollars). Of course, usually someone with MSA is already spending a ton on drugs, so it adds up. Debbie
Hi , i heared about medicen called "riluzole" ,
Is it good for MSA , any1 try it ?
i also heared its expensive , how much should it be per year...?
is it expiramnet medicen ?
10x alot.
itzik.
Hi everyone,
Once again I have taken you advice. Dave will start speech and swallowing therapy, when we return from our trip. I am very excited about it. If it helps him as much as the physical theray has, it will be great. Thanks to all of you for your advice.
Take care, Kathy
Barbara Smith,
Even doctors have different opinions on antibiotics, so second guessing is no good. We also know that you can NOT second guess MSA as it is never the same twice. We do know that keeping the patient hydrated is good. Charlotte had several UTI's and a blood infection in 1998, but has not had any infection since she got the PEG and I keep her full of liquids. :o) Does run up the brief bill :o)
Jim Stark is right that the latest research is saying to avoid antibioics as much as possible, BUT even there I'm not sure they include sulfa drugs in the antibiotic catagory. At one time if you called the doctor and said you have a sore throat, they would give you amoxcillin, now you have to be almost dying before they give you antibiotics.
Take care (glad Ken is doing well now), Bill and Charlotte
My husband, Ken has taken Macrobid for varying periods over the years as well
as Cipro, all daily to prevent UTIs. Even so, he had infections that broke
through. Then he started getting yeast infections because of the medications,
and we took him off the Microbic with the help of Hospice. We knew he had a
UTI when we did this, but it was low grade and he was doing pretty well.
About as month later, he developed a high fever and a massive UTI. Because
Hospice is coming, and he was comfortable, we decided not to treat the UTI.
This was a hard decision which many of you would not have done, but Ken is
very uncomfortable when he has a yeast infection, and he was not suffering at
all. His temperature went to 101 which is very high for him, and the Hospice
nurse ordered all the necessary supplies to help him pass. She put the night
shift on alert that he was transitioning and they had to make sure his brain
tissue was obtained and sent to Mayo. The next morning, his temperature was
down to 99 and by evening, he was able to whisper to me that he was all
right. It is now two weeks later, and he is taking no anti biotics or sulfa
drugs for the first time in five years. he has no UTI, and his appetite has
picked up. In general, he is much better than before all this. he still
cannot walk or talk much or any of the other thing he has lost, but he is
better not worse. Everyone is marveling at his ability to hang in there. I
tell you all this because I always thought it was the medication that was
controlling the UTIs, but he recovered this time faster than when we treated
him, and I am beginning to wonder if giving him the medications was right or
not. Second guessing is not a very worthwhile thing to do when dealing with
this illness, but I thought I should report to all of you.
Barbara Smith
Thanks bill aand funny old thing i have just spent a week in hospital
for a knee op it was only to be over night but the anisthic caused
many problems, and guss what my temp stayed at 96 and a cuople of
times went even lower with baffled us all untill we spoke to our very
well knowledged nuro again Thanks.--- In shydrager@y..., Raymond
Hi All,
If anyone is interested in more information about sleep apnea, go to: http://www.sleepapnea.org/
God Bless, Jim Stark
Actually, I was not trying to set anyone straight. I know too little for
that. I was simply trying to explain why I would choose to use Macrobid for
Ken.
Bernice
wow .... where did it come from? just remember that it still is in your
'delete' file ....
do tell before you delete your Delete file ;-]
cheers
sheila
Hi Philip, Dave also has a trach, due to vocal cord paralysis. He has had it about three years. Your trach sounds very similar to his.
Take care, Kathy
Jean,
I have not been on the computer for 2 days and I had the massage it was
HAHAHA Snow white, I also deleted it and did not open it I had it twice.
Ann from Soddy,TN
How wonderful of you to put this out for all of us. They are wonderful
hints.
You were a wonderful daughter and care giver to you Mom. God bless you.
Ann from Soddy,Tn
Greetings Jim!
You wondered:
Good question.
No, in almost all cases, UPPP surgery (the type you described) is not very
effective. However, a very small number of individuals have overly large
soft palates causing such obstruction. Sometimes the tonsils become overly
enlarged.
In these cases the surgery may be warranted. However, the surgeon (ENT
doctor) must demonstrate this really is the site of the obstruction. Too
many patients have the surgery done only to find out the obstruction is
located in another area.
If MSA is the cause (poor coordination, not clear obstruction), it is likely
the obstruction will not be as easily cleared. But understand the situation
varies from person to person. This is why I recommend learning the options,
and discussing the situation with a doctor. Then if the doctor does
recommend surgery, get a seond opinion. Yes, it costs more, but it's worth
it.
The note was intended to provide a clear warning that surgeries to correct
obstructive sleep apnea have a very poor track record. No point in becoming
another poor statistic.
Regards,
=jbf=
John B. Fisher
John,
Earlier you made the following comment in regards to MSA patients who
may have sleep apnea:
I was diagnosed with severe Obstructive Sleep Apnea about six years ago,
long before my present SDS diagnosis. I was told that I had probably
had sleep apnea for at least 30 years, and maybe all of my life. After
only limited improvement after several months on a CPAP machine, I was
sent to a nose & throat specialist. He discovered that my soft pallet
was so long that it was almost blocking the airway even when I was
setting in an upright position, and was the main cause for the airway
blockage when I was sleeping. He performed a uvula plasty, trimmed my
soft pallet, removed my tonsils and adenoids, and repaired a deviated
septum. This surgery was painful to recover from but I believe it was
the best thing that could have happened for my sleep apnea problem.
Are you saying that if this airway blockage had not been found until
after someone is diagnosed with MSA, that they should not consider a
surgery of this type?
Jim Parsons - Arlington TX
Tim,
If you don't mind, could you please send the exercises, etc. on to the whole
list. I'm sure others would benefit too.
Thanks!
Rose
Nancy,
There are many articles about the ineffectiveness of most surgeries for
obstructive sleep apnea in MEDLINE. Any search engine should pop up a few
MEDLINE search engines. Use UPPP as a search word.
This should reveal some articles about it. There are some 'pro' and some
'con'. However, the articles that are 'con' always look at the long term
(18 month) picture. They essentially note that (a) the patient is no better
and sometimes worse, and (b) it can leave the patient inable to use CPAP or
BiPAP units (it reduces the soft tissue in the back of the throat which the
CPAP/BiPAP therapy requires). If the UPPP fails, the only alternative at
that point is to use a trache tube.
By the way, UPPP and related surgeries have been banned for treatment of
obstructive sleep apnea in some countries, since it is painful and
ineffective.
Also note, a trache tube is the only reversable surgery for obstructive
sleep apnea. If the obstruction is weight related, then it might not be
needed as the weight decreases.
Regards,
=jbf=
John B. Fisher
Due to our nasty weather today which is expected to continue into Friday, 2/9/01, the Shy-Drager/MSA/PD+ support group is canceling its February meeting. I have contacted many members by phone, but in case anyone is checking their e-mail today and had any thought of attending, please join us in March.
We expect to meet at our usual time, Friday, March 9, 2001, 10:00am - Noon, at the Johnson Center, 3444 S. Emerson St., Englewood. See you then!
-- Grace Halmi
Diane,
Sleep problems are definitely a problem with many MSA patients.
Interestingly, they don't seem to be documented in any of the medical
literature. My husband Rob (dx SDS/MSA 3/98) began to have sleep
problems years before other symptoms of MSA appeared. In fact it was
the neurologist that was treating him for his sleep disorder that
diagnosed his MSA.
Broadly, there are three sleep problems experienced by MSA patients.
First, there is the inability to fall asleep or stay asleep. This
can be treated by over the counter sleep aids, most of which use
benedryl as their active ingredient. Some people have also had
success with trazadone, a mild antidepressant that has the side
effect (in this case a welcome one) of making the patient drowsy.
Second, there is a problem called a REM behavior disorder. In most
people, there is a chemical "switch" in the brain that turns off
motor activity d