My blog

Hello again. I've been out of the loop lately! Our son chose to move
back home. For those of you who remember me, it's been a terrible
year. My dad passed, Ken, my husband got his diagnosis, my sister
had stage 2 melonoma cancer, his daughter fell and broke both arms
the day her husband asked for a divorce, yada, yada, yada. I know we
all have troubles. Our son who is 21 dropped out of college,
although he has 60 some odd credits he still hasn't chosen a major,
or finished even a two year degree. Long story short all his life
he's had trouble staying on task, doing what he should do, just
flying by the seat of his pants if you will. He asked for help, got
him to the appropriate doctor and he was diagnosed with attention
deficiet. Which basically means he's a bundle of loose ends that
never get connected! Whew!
And I took an outside job, an opportunity with benefits and
insurance, I just couldn't pass up, if I ever hope to get out of the
cleaning business...LOL Don't get me wrong, I really enjoy cleaning,
but my bones and muscles are screaming to quit!
The last we spoke my husbands doctor was"amazed" at his improvement.
Me too, so much so, I wondered....
But that was short lived apparently. He is getting much slower with
his movements, so the doc upped his sinemet from (4) 1/2 pills a day
to three whole pills a day. Tried that for a week, and he just
couldn't tolerat it. Guess it lowered his blood pressure too much.So
we went back to the original dosage and we're back to shaving him
because he's just too weak. And yesterday he had lots of chest pain,
just like before the diagnosis, some GI trouble too. I guess the
saddest part is that his short term memory is now almost non
existent, and this problem developed so rapidly, just in two weeks
time. He gets things mixed up so badly. On 60 minutes II, I
think it was, they were doing a piece on the documents that the FBI
didn't turn over on the Tim Mcveigh bombing, and he thought they were
discussing the ballot controversy here in Florida about the lost
ballots for the presidential election. I finally got him to
understand what the story line was about. It's crazy. He remembers
all about the ballot controversy, and the bombing, but he couldn't
understand the program. It's like he had three pieces of a puzzle
and couldn't figure out where each piece went. He doesn't forget
something ever happend, he just remembers it wrong. The doctor said
it wasn't his medicine causing the memory problems, just the
progression of the disease. He may listen intently to the
conversation I had with the doctor in the morning on the phone, but
by later in the day, he looks at the telephone ID box, and says...I
see the doctor called, what did he have to say?
Can any of you relate to this memory problem? In the beginning he
had so much chest discomfort, and GI discomfort, and couldn't sleep,
and on and on and on, but those things abated, and now one or the
other seems to revisit us now and again. Could this happen with his
memory? Can any of you tell me from your experience if we are at a
point of no return on the memory and the liklihood that his memory
might return too? And yet another question...since the memory went
soooooo fast, is that an indication it will continue to decline
rapidly? I trust you folks. Your experience is worth its weight in
gold, and more informative than the doctor.
Thanks for your time and trouble,
hugs to everyone
Betty

Hello everyone,
I dont think I have gotten to communicate with everyone yet, but I
am hoping to do so. I read the e-mails and get confused as to who is
getting what procedure, or who is asking what question. I am still
trying to learn everyone, but I would love for anyone to correspond
with me. This group has been extremely helpful to me if only for the
fact that I know there ARE other people in the world who have this
problem and understand what I am going through. Thank you everyone
for sharing your situations with me.
I do have a question though. I have had pancreatitis my whole life,
but just recently was diagnosed Chronic. Since my Dx I have found
that my hair has been falling out at a more rapid rate. When I am
washing my hair it comes out in handfulls and after when I am putting
picking it or putting moose on it more comes out. I do not style my
hair with alot of chemicals or a blow-dryer so I know it is not
that. If anyone has any info please share with me.
Sincerely, Alicia

Interesting question. My experience has been that peer-reviewed
literature is most influential, followed by detailed personal
knowledge. I have used the emedicine web site recently to educate my
mother's doctors on another condition they suspect she has and it was
very helpful. I've pasted a link below for the MSA and automonic
dysfunction writeup from the emedicine web site.
http://www.emedicine.com/neuro/topic609.htm
In my mother's case she has been under the care of probably 6
different doctors as she has developed complications and I became the
coordinator/focal point of information. Unless you are at an
academic medical center, I think it is very hard to achieve
coordinated care on an inpatient basis or outpatient basis.
Anne

Hi Debbie,
I don't know if this is much help, but when I'm looking for something
I go to google.com and just put in sphincterotomy, and all kinds of
websites come up. Good luck with your search, and with the
procedure!
Lots of Hugs, Linda

Rinsho Shinkeigaku 1989 Oct;29(10):1232-6Related Articles, Books
[Bilateral abductor vocal cord paralysis (Gerhardt syndrome) in the
Shy-Drager syndrome].
Yasuda T, Senda Y, Koike Y, Hakusui S, Takahashi A.
Ten consecutive patients with a progressive pan-autonomic failure of the
Shy-Drager syndrome were investigated. Movement disorders of the vocal cords
were examined with a fiber-optic laryngoscope as well as a video-recorder.
Moderate to severe vocal cord paralysis was present in five of ten patients.
The vocal cords were almost immobile during inspiration, while there was no
limitation of the adduction during phonation. In two cases, grade of vocal
cord paralysis was asymmetric. One patient developed peculiar twisting-like
dystonic movements of the vocal cord. Polygraphic studies revealed that SaO2
was lowered in spite of tachypnea during sleep. In two cases, the expiratory
flow volume curve in effort-dependent portion near TLC showed a plateau and
the inspiratory part of the curve also showed a plateau indicating constant
flow. These functional disorders suggest an upper airway obstruction
probably due to the vocal cord dysfunction. There was no vocal cord
paralysis in two patients who had neither snore nor stridor. Development of
a severe vocal cord dysfunction usually manifested itself clinically as
stridor, snore or respiratory failure requiring tracheostomy. There was
little information on the pathology of the vagal nerves and nuclei supplying
motor control to the laryngeal muscles. The mechanism of the selective
involvement of abductor muscle (posterior muscle) of the vocal cord
(Gerhardt syndrome) remains unsolved. Vocal cord paralysis should be looked
for since it can result in respiratory failure leading to death.

My husband has been taking Detrol for about 3 weeks. Some days he doesn't
have any accidents, then other day's he's in the bathroom more than he's
not. I'm not really sure how well it's helping, but I guess we'll keep
trying for a little longer.
Beth
On Tue, 29 May 2001 20:20:12 -0400 Ann Johnson <grannymurt@...

Rinsho Shinkeigaku 1998 Dec;38(12):1059-63
[Effective nasal CPAP therapy for heavy snoring and paradoxical respiration
during sleep in a case of multiple system atrophy].
Miyamoto M, Miyamoto T, Katayama S, Hirata K.
Department of Neurology, Dokkyo University School of Medicine, Tochigi,
Japan.
A 64-year-old man with multiple system atrophy complained of daytime
sleepiness, fatigue, and snoring. Neurological examination revealed severe
autonomic failure, mild cerebellar ataxia and akinesia. Daytime blood gas
analysis showed respiratory acidosis with hypoxia and hypercapnia. MR
imaging of the brain showed atrophy of the pons, cerebellum and bilateral
frontal lobes. Although paralysis of the vocal cord abduction was not found
by laryngoscopy during daytime examination, polysomnography (PSG) showed
heavy snoring with paradoxical respiration associated with severe
desaturation during sleep as well as reduced slow wave sleep and REM sleep.
He was diagnosed as having sleep-related upper airway obstructive breathing
disorder probably due to Gerhardt syndrome. Tracheostomy was considered, but
we performed nasal CPAP therapy during sleep because this therapy is
non-invasive and would not impair his daily life. After nasal CPAP therapy,
daytime sleepiness, fatigue, and snoring with desaturation improved, and PSG
showed increased slow wave sleep. These results demonstrate that nasal CPAP
therapy improves the quality of sleep and should be considered in patients
with early stages of multiple system atrophy who exhibit sleep-related
breathing disorders.

HI everyone,

Well I wanted to update everyone on what is going on with me and why I have not been real active lately. First I am sorry for not being such a good member. I have been under a lot of stress and I have taken a break from a lot of things in my life at the moment.
First, I had an appoinment with an internist last week. He was a new Dr and In the same office as my new GI. As most of you know I have been suspecting that I have LUPUS for a while now and have been to a million different Dr.s trying to figure out what is wrong with me.
After examining me he told me he felt I was right! For me this was a HUGE thrill since everyone else I have seen has told me I did not have Lupus and that I just needed to lose weight and get rid of my stress. We looked over my past ANA tests and discovered that they were positive and not negative, and were speckled as well. Today I went and had another Lupus profile done and an MRI done on my pancreas and gastro system.
Dr Gilbert feels I do have Lupus as well as Fibromyalgia, and he also feels that everything I have had happen to me, including my Pancreatitus is related to me having the lupus and that is is just a progression of the disease,.
So as you can see my plate has been rather full with trying to get some help!
I also have a lot of things going on at our church. We lost our pastor last Oct. and I have been doing all the secretarial things as well as trying to keep everything running smoothly. like our monthly news letter and calender. We are alos trying to get ready for Vacation Bible School.
Sooooooo.... that is what is going on here and maybe I can get back to being on here more.
I hope everyone is better today.

Becky

Al took Ditropan and it really did not help, it was given at night and we
finally had to go to a catheter.
Ann from Soddy, TN

Bill
About discharging Mother from the hospital; Well, there was no verbal or
written instructions to follow. I had been at Mother's side most of her days
in the hospital, so I did what they were doing. After 7 months in the
hospital, recuperating from cataract surgery, a broken leg and then it
re-broken, hallucinations due to narcotic meds and wrongly recorded
medications she was presently on, they let her go. At that time she was
being walked 50' twice daily. No one informed us about an x-ray taken 3 days
prior to her discharge showing the screws in the healing leg were coming
loose from the plate.
When she came home with me I had no idea the screws were loose, so I
encouraged her to walk to and from the bathroom. I thought the pain she
complained of was due to muscle atrophy. It makes me so angry to know I was
hurting Mother due to my ignorance. After 2 weeks she refused to use the
walker and would insist only on the wheelchair to get around. I gave in
thinking what difference would it make on her stiff muscles, in a couple of
weeks she has her 30 day follow-up appointment......About 2 months later she
had the plate removed, the bone had to be re-broken to inserted a permanent
rod in the leg. AT A DIFFERENT HOSPITAL. The hospital received a couple of
citations after we reported them, but no neglect was found. I found out that
the Doctors police themselves!!!!
I personally think the hospital chose not to mention the loose screws
because medicare only pays for 100 days, and Mother's stay was well over
that.
Communication is vital!!!!!
Mary Ann-MN
From: Raymond Werre <b.werre@...

Robertson D, Shannon JR, Jordan J, Davis TL, Diedrich A, Jacob G, Garland E, Tellioglu T, Biaggioni I.
Multiple system atrophy: new developments in pathophysiology and therapy.
Parkinsonism Relat. Disord.. 2001 Jul;7(3):257-260.
PMID: 11331196 [PubMed - as supplied by publisher]

Robertson D, Shannon JR, Jordan J, Davis TL, Diedrich A, Jacob G, Garland E, Tellioglu T, Biaggioni I. Related Articles

Multiple system atrophy: new developments in pathophysiology and therapy.
Parkinsonism Relat. Disord.. 2001 Jul;7(3):257-260.
PMID: 11331196 [PubMed - as supplied by publisher]
NPF Nathan Blaser Shy-Drager Research Program, Autonomic Dysfunction Center, Departments of Medicine, Pharmacology, Neurology, and Psychiatry, Vanderbilt University, 37232-2197, Nashville, TN, USA
There have been substantial advances in the last five years in understanding the basic and clinical pathophysiology underlying multiple system atrophy (MSA). Identification of glial cytoplasmic inclusions has been the most important organizing principle for further elucidation of underlying mechanisms. Recently, several unexpected developments at the clinical level have been reported. In this article, we will focus on two of these: (1) the recognition that substantial autonomic function is retained in MSA but not modulated appropriately, and (2) a potent pressor effect from ingestion of water, which cannot be explained by currently understood physiologic and pathophysiologic mechanisms. In some patients, water has elicited a 50% increase in blood pressure and been more therapeutically effective than any available pressor drug. By careful coordination of the pressor effect of water and the depressor effect of carbohydrate-rich food, many patients with MSA can now have their
blood pressure controlled without pharmacological intervention.

Deb,
Hi dear I have found that as long as the ERCP itself doesn't give you an
attack it doesn't hurt at all and yes they will do the sphincterotomy and
place a stent there to hold it open and hope that it stays that way I haven't
had luck with them I hope that it works for you.. good luck...
Hugs and kisses
your pancreatis pal Anna from Michigan

re: Karyn - I called her yesterday morning around 6am to remind her
she needed to get ready for a dr. appt. She said she had no feeling
in her left arm, and was not able to move it at all, or even wiggle
her fingers/wrist on that side. I went right down there and took her
to the ER, fearing perhaps some kind of "mini-stroke" or something.
They did all kinds of tests, including a CT Scan, blood work, and she
was seen by the Neurology team. After about 4 hours, they finally
decided it was not any kind of stroke, but something called "radial
nerve compression". May have been caused by something as simple as
sleeping on it wrong. By late yesterday afternoon she was getting
back some of the feeling/use of that arm/hand, but it's still not
completely back. They fitted her for a wrist splint to wear for the
next several weeks and sent her home. THey expect it will "come
back"
by itself within a month or so. Sure was a scary thing yesterday
morning though! In the meantime, she still is struggling with not
having full use of her left hand/arm. We're supposed to get her PC
back tomorrow (Saturday), but now I'm not sure how well she'll be
able
to type! ;-(

Thanks again for your patience while we work through this transition

Can anyone give me a website that tells about a
sphincterotomy? I can't find anything on the
procedure itself.
Thanks,
Debi

Hi Bill
I'm new here and have been lurking but because this is a subject that I
think I know something about, I decided to reply.
I looked after my husband for 20 years and the one thing that stands out in
my mind is the need for professional follow-up at home and respite
assistance. Once you have checked the patient out of the facility you are
usually on your own.
Alice

Hi all caregivers,
I have been asked to be on a panel to discuss concerns about bringing a
patient home from a hospital or nursing/rehab center. Please give me
input on things (both good and bad) that you have encountered in a
transition of this type. I am not sure what form of summary will be
available, but I will try to get some sort of written output to put on
the list.
This is a program of the National Alliance for Caregiving. It is in
Bethesda, MD on June 7th. It is listed as
The National Alliance for Caregiving is forming a focus group of family
caregivers who have provided care during the transition from hospital to
home or other care setting. The goal of the focus group will be to
collect caregivers' thoughts about their experiences with hospital
discharge planning. The Alliance will use the information gathered from
the focus group to develop materials designed to improve communications
between caregivers and discharge planners.
So get any input back to me this week.
Take care, Bill

Hi Debbie,

I just developed the pain in my back last week. But, this is the worst pain I have

had (except for the initial attack). I have another bad disc in my back (after one

back surgery a couple years ago), and when I had my first attack, my back was

hurting. That is what started my whole thing. I woke up and couldn't move. I

assumed it was my back problem. I went to my back dr, and he started poking,

and when he got to my abdomen, I screamed. He sent me to my primary care

dr. After that, it hurt whenever I ate. Then I had all the tests, and my first

'attack' was after my colonoscopy.

So, in other words, on my good days, my back doesn't hurt. But, when I'm having

bad pains in the abdomen, my back hurst REALLY bad (in the middle of my back).

It is a different back pain then from my disc problem. I can't get the disc problem

fixed until they get the chr pan calmed down. I just love feeling like a 90 yr old

at age 35! LOL

I don't know if this helps since I'm not near as advanced as you....

Hugs,

Debi

Dear Christine,

I am going to have a stent put in next Friday. Then, after that, they will do

a sphincterotomy (I don't know what that is). My primary care said she

would manage the pain part of it, and that my dr is a good one. I have yet

to see that..... I don't think he and I communicate too well... But, apparently,

after the ERCP I had, the dr told my Dad all this stuff, and my Dad forgot to

tell me. So, I can't blame the dr for that. My Dad told me that last night

when I told him what the plan was. He said "oh yeah, dr wenham said that

that is what he would do if you still had pain".

Do you vomit when you eat, or it just hurts when you eat? Have you progressed

to this point, or did it start out with the tpn? I am wondering if the sphincterotomy

will cure me, or is it just a fix for a short time?

Hugs,

Debi

Hi Barb,

How are you holding up my friend?? Are you keeping busy?? How's the family??

Barb, I have my puter set in black so I don't understand why you would receive a red message. The original article was in black and as far as I know, I forwarded it in black.

All is well at home......restaurant business fine.....Michael fine and older sons and families doing well! Jes, looks like everything is okay so I do have alot to be thankful for!!!!!!!!!!!!

Please give my regards to Tony.

later and hugs,

cindy

Hi Debi, all,
First of all, I'm sorry so many people have been having problems with

Thank you very dearly, Dave!

Debi

Below are the headlines from the latest story summaries appearing on our Web site. Go to http://www.stemcellresearchnews.com/new2581.html to read the summaries.

cheers
sheila

Too often we underestimate the power of a touch, a smile, a kind word, a listening ear .... all of which have the potential to turn a life around. --- Leo Buscaglia

Good Morning Alicia,

The Viokase does not promote gas, but it could be the way your

body in reacting to it. I get gas also, so your not alone. It is

just how we handle the Viokase. Not everyone gets gas.....

Lucky us!!!!! LOL

Debi

Hi: For Woodbury Products, Inc. 800 # regarding "Thick it" and information
on swallowing problems it is: 1-800-431-1119. They will send a catalog and
information on swallowing problems. Also it is a lot less expensive
ordering "Thick it" through them. For 6/30 oz. cans of "Thick it" original
it is $72.47 for a case which comes to $14.33 a can. Hope this helps.
Hugs, Judy

Note that they used "human embryonic kidney cells" to do this research. That means this resesearch would also stop if Bush bans it at NIH. Connie Mack (former Republican Senator from Florida and a Pro-Life advocate) has a good idea, create a new law to ban all human fetal tissue research in the USA which would stop any idea of abortion for money, but allow the pluripotent stem cell research to continue as the cells are not killed, but used to save lives.
While this plan would not please extremists on either side, it would allow research to continue and stop any notion of abortion playing a part, even in private research. You should also note that the mechanism for cell destruction is similar to that of MSA from our present understanding of glial cell death. This discovery could mean great strides to a cure for MSA.
Take care, Bill and Charlotte
Source: Stanford University
Date: Posted 5/25/2001
Scientists Find Solution To A Mystery Surrounding Alzheimer's, Huntington's
And Other Neurological Diseases
Stanford researchers have found an answer to a long-standing mystery
surrounding Huntington's, Alzheimer's, Parkinson's and other
neurodegenerative diseases. Their discovery, published in the May 25 issue of
the journal Science, focuses on one of the telltale signs of
neurodegenerative illness: the mysterious buildup of defective proteins in
and around nerve cells. Healthy cells have the ability to break down and
eliminate unwanted proteins. But in neurodegenerative diseases, abnormal
proteins clump together to form clusters - called aggregates - that
interfere with the cell's normal functions. "It's been known for years that
most neurodegenerative diseases are associated with protein aggregates," says
Ron R. Kopito, professor of biological sciences and co-author of the study,
"but no one had a clue as to the exact relationship. Do aggregates cause the
disease, or are they the result of the disease?" To find out, Kopito and
graduate student Neil F. Bence designed a laboratory experiment to assess the
impact of protein aggregates on the inner workings of a cell.
Their specific target was the proteasome - a barrel-shaped enzyme that Kopito
calls the master controller of the cell. "The proteasome is like a salami
slicer that cuts protein molecules into little bits," he says. "It gets rid
of abnormal proteins, and it breaks down and recycles regulatory proteins no
longer needed by the cell." Human cells contain thousands of proteins, each
with a unique three-dimensional shape determined by specific genes. But
random genetic errors and mutations may cause proteins to fold into the wrong
3-D configuration -- often with devastating results. One example is
huntingtin - a protein found in healthy nerve cells. A slight genetic
mutation may cause huntingtin proteins to fold incorrectly and accumulate
inside the nerve. Defective huntingtin aggregates are common in patients with
Huntington's disease. Proteasomes are supposed to slice misfolded proteins
into harmless pieces before they have a chance to form aggregates, but how
does a proteasome recognize an abnormal protein? The answer: A tiny molecule
called ubiquitin latches onto the damaged protein and carries it to the
proteasome, where the protein is sliced and diced.. But in some diseases, the
ubiquitin-proteasome system breaks down. Huntingtin aggregates, for example,
contain thousands of misfolded proteins with ubiquitin flags attached to
them. So why doesn't the proteasome recognize and destroy these
ubiquitin-labeled proteins? "People have speculated that the reason these
proteins accumulate is because the proteasome isn't functioning properly. In
our study, we put that to the test,"Kopito says.
In their lab experiment, Kopito and Bence used human embryonic kidney cells
instead of neurons. To observe proteasome activity in the kidney cells, the
researchers devised a genetic tool that causes specific cells to change
color. Here's how it worked: They took advantage of a molecule called green
fluorescent protein (GFP), which emits a green fluorescence when placed under
a special light. Although GFP is a very stable molecule, Bence and his
co-workers engineered a mutation in the GFP gene that produces unstable
proteins, which break down rapidly inside the proteasome. Mutant GFP genes
were inserted into the kidney cells, producing unstable proteins that glowed
green - but only when they remained intact. When a GFP molecule was chopped
into fragments by a proteasome, the green fluorescence did not appear. "The
level of green fluorescence indicated how efficiently the proteasome was
breaking down proteins," says Bence, lead author of the Science study. "If
the cell glowed bright green, then we knew the proteasome was not
functioning." The researchers wanted to see what would happen to unstable
GFPs if normal huntingtin genes were inserted into the kidney cells. The
result was clear: The cells did not change color - a strong indication that
the proteasome enzymes were doing their job slicing up GFP and other unwanted
proteins. But when Bence and Kopito inserted a mutant huntingin gene, the
cells turned bright green in a matter of hours. The change in color was
accompanied by a buildup of defective protein aggregates inside the cells.
They tried the same experiment using genes that produce mutant forms of CFTR
- a protein that has been linked to the disease cystic fibrosis. The results
were the same: Cells containing mutant CFTR proteins also formed aggregates
and became brightly fluorescent. "The key finding in our study is that the
function of a proteasome can be impaired by the presence of protein
aggregates," Kopito says. "These results provide the first well-documented
linkage between protein aggregation and a critical cellular function. If the
proteasome isn't working properly, itís unable to perform its regulatory
function, which is very bad for the cell."
Returning to the original question, do aggregates cause diseases, such as
Huntington's and cystic fibrosis, or are they a consequence of disease? "Our
study shows that aggregates themselves can affect the proteasome and cause
toxicity," concludes Bence. Itís a vicious circle, he points out: "The
disease produces defective proteins that clump together into aggregates.. Then
the aggregates build up and interfere with proteasome function, which results
in the production of more aggregates that further impair the proteasome." The
relatively slow buildup of aggregates in and around nerve cells could explain
the latency of many neurodegenerative diseases, adds Kopito. "The effects of
aggregate formation can remain silent for a long time until aggregates build
up to the point where onset of the disease occurs suddenly," he says. "That
may be why these diseases usually appear in adults. The same is true with
ALS, or Lou Gehrig's disease. Gehrig was a spectacular athlete who lost the
use of his muscles in the prime of life and ended up paralyzed." If it turns
out that aggregate proteins are the toxic agents that kill cells, then one
treatment would be to dissolve the aggregates or prevent them from forming,
notes Kopito. "Our study shows that a cell turns brightly fluorescent when
the proteasome shuts down. That's simple. But the study doesn't tell us why
it shuts down," says Bence. "We believe there are complex causes for the
impairment of the proteasome," adds Kopito. "A likely cause is a problem
inside the proteasome that prevents proteins from passing through. Imagine a
rope with a knot in it. The aggregate can function very much like a knot.
Other studies have shown that proteins that do not unfold properly can get
stuck inside the proteasome. We want to conduct another experiment to see if
aggregates get stuck, too." In addition to Bence and Kopito, the May Science
study was co-authored by Roopal M. Sampat, a graduating senior in biological
sciences at Stanford.
Note: This story has been adapted from a news release issued by Stanford
University for journalists and other members of the public. If you wish to
quote from any part of this story, please credit Stanford University as the
original source. You may also wish to include the following link in any
citation:

http://www.sciencedaily.com/releases/2001/05/010525071918.htm

To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com

Thanks Anna,
How are you doing today? I hope you are feeling some better. Did you
ever talk to Dr. Elta (is that the right name?) and let her know
what awful treatment you received? I don't know what good it would
do though. Oh well, I need to head back to bed. I'm just drained,
and week! Please take care, and let me know whats happening with
you, please?
Lots of Hugs, Linda

Cindy. I had a hard time reading the text in red. I wonder if anyone else did.

Interesting but hard to get the sense of it when my eyes got weary.

Hope all is well at your home and that the kids are doing well in school.

Barb [INLINE]

--
"The Lord's blessing is our greatest wealth; all our work adds nothing to it." Proverbs 10:22

Debbie,
I have been told that everyone feels pain in a different way. Does
that make sense? My pain is on the upper right side, and does go
through to my back. A friend of mine here in Ohio, pain is on the
left side. Go figure! I'm really happy you do not feel the back
pain, its awful! Consider yourself lucky, but then again, I would
hate the pain going up to my chest, that has to be very scary too!
Please, take care of you.
Lots of Hugs,
Linda

The Boston support group had a speaker on "urodynamics" a while back,
so I can shed some light on this kind of problem. There are a number
of problems regarding urination that can arise, from the inability to
urinate at all to urinary incontinance.
Basically, the problem arises because the bladder itself is a muscle
which has to be contracted to empty. There is another muscle, a
sphincter, at the neck of the bladder, which has to be relaxed in
order for the bladder to empty. Since the message from the brain
must be "contract bladder, relax sphincter" in order to release
urine, sometimes the message gets confused, since this is one of the
area of the brain that is damaged. This can result in contracting
both muscles, relaxing both, or some variation thereof.
So, depending on what's happening, there are several alternatives.
If there is an inability to empty the bladder or an inability to
empty the bladder fully (a frequent cause of bladder infections) then
most often the solution is self catheterizing. This is generally
done with a "straight cath" and once the patient is trained, using a
clean-but-not-sterile process, it is not too difficult to do. There
are several on the list who use this method and can tell you more.
If the problem is urinary urgency or urinary incontinence, there are
medications, like detrol or ditropan, which can help. Often these
medications lower blood pressure and cause constipation, so they must
be used with care, and sometimes other meds must be adjusted to
compensate for their effect. Also, sometimes urinary urgency is
actually caused by the fact that the bladder is not emptying fully,
so the best solution is actually self-cathing.

Source: Stanford University
Date: Posted 5/25/2001
Scientists Find Solution To A Mystery Surrounding Alzheimer's, Huntington's
And Other Neurological Diseases
Stanford researchers have found an answer to a long-standing mystery
surrounding Huntington's, Alzheimer's, Parkinson's and other
neurodegenerative diseases. Their discovery, published in the May 25 issue of
the journal Science, focuses on one of the telltale signs of
neurodegenerative illness: the mysterious buildup of defective proteins in
and around nerve cells. Healthy cells have the ability to break down and
eliminate unwanted proteins. But in neurodegenerative diseases, abnormal
proteins clump together to form clusters - called aggregates - that
interfere with the cell's normal functions. "It's been known for years that
most neurodegenerative diseases are associated with protein aggregates," says
Ron R. Kopito, professor of biological sciences and co-author of the study,
"but no one had a clue as to the exact relationship. Do aggregates cause the
disease, or are they the result of the disease?" To find out, Kopito and
graduate student Neil F. Bence designed a laboratory experiment to assess the
impact of protein aggregates on the inner workings of a cell.
Their specific target was the proteasome - a barrel-shaped enzyme that Kopito
calls the master controller of the cell. "The proteasome is like a salami
slicer that cuts protein molecules into little bits," he says. "It gets rid
of abnormal proteins, and it breaks down and recycles regulatory proteins no
longer needed by the cell." Human cells contain thousands of proteins, each
with a unique three-dimensional shape determined by specific genes. But
random genetic errors and mutations may cause proteins to fold into the wrong
3-D configuration -- often with devastating results. One example is
huntingtin - a protein found in healthy nerve cells. A slight genetic
mutation may cause huntingtin proteins to fold incorrectly and accumulate
inside the nerve. Defective huntingtin aggregates are common in patients with
Huntington's disease. Proteasomes are supposed to slice misfolded proteins
into harmless pieces before they have a chance to form aggregates, but how
does a proteasome recognize an abnormal protein? The answer: A tiny molecule
called ubiquitin latches onto the damaged protein and carries it to the
proteasome, where the protein is sliced and diced. But in some diseases, the
ubiquitin-proteasome system breaks down. Huntingtin aggregates, for example,
contain thousands of misfolded proteins with ubiquitin flags attached to
them. So why doesn't the proteasome recognize and destroy these
ubiquitin-labeled proteins? "People have speculated that the reason these
proteins accumulate is because the proteasome isn't functioning properly. In
our study, we put that to the test,"Kopito says.
In their lab experiment, Kopito and Bence used human embryonic kidney cells
instead of neurons. To observe proteasome activity in the kidney cells, the
researchers devised a genetic tool that causes specific cells to change
color. Here's how it worked: They took advantage of a molecule called green
fluorescent protein (GFP), which emits a green fluorescence when placed under
a special light. Although GFP is a very stable molecule, Bence and his
co-workers engineered a mutation in the GFP gene that produces unstable
proteins, which break down rapidly inside the proteasome. Mutant GFP genes
were inserted into the kidney cells, producing unstable proteins that glowed
green - but only when they remained intact. When a GFP molecule was chopped
into fragments by a proteasome, the green fluorescence did not appear. "The
level of green fluorescence indicated how efficiently the proteasome was
breaking down proteins," says Bence, lead author of the Science study. "If
the cell glowed bright green, then we knew the proteasome was not
functioning." The researchers wanted to see what would happen to unstable
GFPs if normal huntingtin genes were inserted into the kidney cells. The
result was clear: The cells did not change color - a strong indication that
the proteasome enzymes were doing their job slicing up GFP and other unwanted
proteins. But when Bence and Kopito inserted a mutant huntingin gene, the
cells turned bright green in a matter of hours. The change in color was
accompanied by a buildup of defective protein aggregates inside the cells.
They tried the same experiment using genes that produce mutant forms of CFTR
- a protein that has been linked to the disease cystic fibrosis. The results
were the same: Cells containing mutant CFTR proteins also formed aggregates
and became brightly fluorescent. "The key finding in our study is that the
function of a proteasome can be impaired by the presence of protein
aggregates," Kopito says. "These results provide the first well-documented
linkage between protein aggregation and a critical cellular function. If the
proteasome isn't working properly, itís unable to perform its regulatory
function, which is very bad for the cell."
Returning to the original question, do aggregates cause diseases, such as
Huntington's and cystic fibrosis, or are they a consequence of disease? "Our
study shows that aggregates themselves can affect the proteasome and cause
toxicity," concludes Bence. Itís a vicious circle, he points out: "The
disease produces defective proteins that clump together into aggregates. Then
the aggregates build up and interfere with proteasome function, which results
in the production of more aggregates that further impair the proteasome." The
relatively slow buildup of aggregates in and around nerve cells could explain
the latency of many neurodegenerative diseases, adds Kopito. "The effects of
aggregate formation can remain silent for a long time until aggregates build
up to the point where onset of the disease occurs suddenly," he says. "That
may be why these diseases usually appear in adults. The same is true with
ALS, or Lou Gehrig's disease. Gehrig was a spectacular athlete who lost the
use of his muscles in the prime of life and ended up paralyzed." If it turns
out that aggregate proteins are the toxic agents that kill cells, then one
treatment would be to dissolve the aggregates or prevent them from forming,
notes Kopito. "Our study shows that a cell turns brightly fluorescent when
the proteasome shuts down. That's simple. But the study doesn't tell us why
it shuts down," says Bence. "We believe there are complex causes for the
impairment of the proteasome," adds Kopito. "A likely cause is a problem
inside the proteasome that prevents proteins from passing through. Imagine a
rope with a knot in it. The aggregate can function very much like a knot.
Other studies have shown that proteins that do not unfold properly can get
stuck inside the proteasome. We want to conduct another experiment to see if
aggregates get stuck, too." In addition to Bence and Kopito, the May Science
study was co-authored by Roopal M. Sampat, a graduating senior in biological
sciences at Stanford.
Note: This story has been adapted from a news release issued by Stanford
University for journalists and other members of the public. If you wish to
quote from any part of this story, please credit Stanford University as the
original source. You may also wish to include the following link in any
citation:

http://www.sciencedaily.com/releases/2001/05/010525071918.htm

Hi Debbie,
How are you doing? This jerk who discharged me is the same one who
told me last May, when I had the PICC line AND the Groshong, that
if "You get another line infection, I WILL NOT TREAT YOU!" I told
him, "there's the door, you don't have to treat me now!" I told the
nurses I didn't want him back in my room, so why in the world did I
let him see me when I went back in? Stupid on my part. I just hate
the thought of finding a new doctor, we all know how hard that is! I
love my GP, but he doesn't do hosptial admits, just
this "hospitalist" they have. Oh well.......I'm trying to hold on
until next Friday so I can make it to IU. My temp is back up to
101. Did you know that when you get dehydrated you run a fever? I
didn't know that until my nurse case manager told me the other day.
I'm off to beddy-bye again. I hope you are doing OK.
Lots of Hugs,
Linda

Hello again Debi,
You would think I would read all of the messages and send one big message
for all of the questions and info I have, but I am not talented yet.
When you find out about the Viokase please let me know. My Doc said they
usually give the Viokase for people who HAVE gas to help treat it. Maybe my
body is just weird from all of the problems.
Thanks Alicia

Hi Debi,
Mine was not painful. I am sure someone else can explain it better than I
can so I wont even try.
The only problem with mine was my Doc did it a day or two after a major
pancreatic flare up and it made me flare up all over again. Other than that
it was just fine.
Sincerely, Alicia

Erma,
Glad to hear that Dale is doing a little better. Sometimes this darn
illness really throws us a curve ball!
Hang in there,
Carol & Rob

Elizabeth,
Thank you for helping out. I hope you are feeling well, I have actually been
feeling pretty good for the past couple of days. It is wonderful to feel
this good, if only for a little while.
Thanks again, Alicia

Hi Christine,
I have a question about the PICC line. I had a port-o-cath placed when they
could not find another vein or artery, but it got infected and had to be
taken out.
I know what the PICC line is, but my GI Doc said they do not like to do
lines, they prefer to do a central line or a jugular when their pancreatitis
patients are hospitalized. Do you feel the PICC has helped any? I asked
about one or any other type of line that can be kept in longer than 2 weeks
or the duration of my hospital stays. I would like to get something in, the
last time they tried to do a jugular two Residents tried. I told them how to
put it in, where to go, but of course they knew everything and they stuck me
about 10 times trying to get it in. Finally I made them call the Doc and he
got in one stick with my information.
I would like to know if anyone else has an opinion on this also.
Thank you, and sorry for reading an e-mail that was not to me.
Sincerely, Alicia

Thanks for the answers to my MSA Progression question. We seem to be
doing most of what you said. Dale has had some lung problems and also
problems with his sodium level being too low, but both of those are
doing much better now. They must have just caused his problems to
worsen a little more and not coming back. I do appreciate the in put.
The doctor put him on prednisone Thursday and he does seem to be some
better. At least he is not passing out.
Thanks again,
Erma Dean

Debbie,
I hurt in my chest also. It hurts right in the middle of my chest on the
bottom of my bra line. Mine does radiate into my back though, but not all
the time. I think eveyones pain is different. When I was going to my last
GI his Nurse Practicioner told me most people hurt right over the top of
their pancreas and not in the middle of their chest like me, but my new GI
Doc said everyone hurts in a different place.
Sincerely, Alicia

Hi Pam
I'm a new subscriber to your List. Two things, first what is the URL for
your homepage and secondly, why is Parkinson's disease mentioned so much in
all the articles?
TIA, Alice

http://www.parkinson.ca/whatsnew/newsmay03.html
Parkinson Society Canada Applauds
the Principled Approach to Stem Cell Research Taken by Health Canada and the
CIHR
The Parkinson Society Canada has taken a public stand in support of the
draft legislation announced by Health Canada regarding Assisted Human
Reproduction, and in particular, stem cell research. The Parkinson Society
Canada endorses and encourages research using stem cells into the cause,
treatment and prevention of PD and other neurodegenerative disorders. This
support assumes that any research conducted with stem cells satisfies the
ethical standards of the scientific establishment and the community at
large.
"Stem cell research will enormously benefit people with Parkinson's Disease,
now and in the future," says Mary Jardine, Executive Director of Parkinson
Society Canada. "It offers the potential for progress in finding the cure
for Parkinson's and for enhancing treatment for the over 100,000 Canadians
who suffer from Parkinson's."
Parkinson's disease is a progressive neurodegenerative illness that is
characterized by tremor, stiffness, slowness of movement, and difficulty of
balance; sometimes, it is also characterized by dementia. These symptoms
appear when there is not enough dopamine, a chemical neurotransmitter, in
the brain. In Parkinson's disease, many of the nerve cells that transmit
messages between each other and to the muscles, allowing movement to take
place, have died, and the remaining cells cannot produce enough dopamine.
The Parkinson Society Canada is the national voice of Canadians living with
Parkinson's. Their purpose is to ease the burden and find a cure through
advocacy, education, research, and support services. Although the cause of
Parkinson's is not yet known, research in Canada and elsewhere has made
great progress toward understanding the cause, providing improved treatment,
and developing possible cures.
Patients with Parkinson's Disease dream of a healthier, happier future free
of the hardships this disease imposes. Today, the use of stem cells offers
them more than a glimmer of hope that those dreams may come true.
Contact: Mary Jardine
416-565-5445 (cell phone)
800-565-3000 (national toll-free number)

Kimber,
I would love to have the info. It doesn't matter to me which way I get it,
just which ever way is easier for you. You can e-mail me at
Tweeter1001@... and let me know, if you prefer to send in the mail I will
give you my address. It is what ever is easier for you.
Sincerely, Alicia

Thank you for your concern. I've learned roll with the punches. I had a great
teacher and I miss him a lot (he was a close family friend who had hemophilia and HIV. ) He never gave up or gave in. He passed away several years ago in his sleep.
I was very lucky to have someone to show me how to manage and deal with chronic illness (I'd known him since I was 7 years old).
Kimber

Dear Friends:
Over the past several weeks, so many of you have written to me to
share your feelings about Ken's passing. I want to thank each of you from the
bottom of my heart. I feel as if you have each shared a bit of your heart
with me, and I am part of you. It has been a hard time in our family. Even
though Hospice people were coming for over six months and we really prayed
for Ken not to suffer any longer, we keep wishing he was still here if just
for a moment. Your notes have really done more than I can tell you to sustain
me and our family.
We had a Memorial Service in a big tent in our back yard last Sunday.
Over 150 people attended, and we had a Mexican feast afterwards. Ken's last
request had been for a big Burrito three days before he died, and he ate
every bite of it, so of course, we served Mexican food at his Memorial party.
We had a bagpiper, and many people shared their memories of Ken all the way
back to his childhood. It helped to bring back some of the person that
Shy-Drager Syndrome had taken from us. I made a tape of the service, and I
find that playing it from time to time is helpful.
One thing I want to remind those of you who wish to contribute brain
tissue for Research. We had written to Dr.. Benarroch at the Mayo Clinic
after he had asked those of us on this list to help him with his research of
Shy-Drager Syndrome. However, when it was apparent that we intended to let
Ken die at home, our local Coroner said he would NOT assist us. So, we had to
contact a Neurological Brain bank in Los Angeles to harvest the tissue and
send it to Mayo. There was a four hour window in which this could take place.
Fortunately, everyone worked fast, and it was accomplished, but if this is
something you are considering, you MUST get it arranged well in advance. Dr.
Benarroch has written me that the tissue arrived in good shape, and he will
let me know what they discover. Since Ken's case was so complicated and
unusual, I am really glad we could accomplish it.
My love and my thanks to all of you for your wonderful support to me
through the whole time of Ken's illness and his passing. I love you all.
Barbara Smith

Click here: Dementia with Lewy Bodies

Debi,
call anytime. I might have to transfer you to another phone as
my work computer is being upgraded (YEAH) so it's with IT
and I'm not sure what time I'll get it back. However, I have
access to all the other computers. See, I think better about
programs if I have them up in front of me when I'm helping
someone figure out a program (which is a big part of my job at work).
Kimber

Pancreatitis-unsubscribe@egroups.com

Click here: Parkinson's disease and diet
this is the book some of you were talking about. We had it, and we
found it very helpful.
Barbara Smith

Debi,
actually, that clot is the only one I've ever gotten. It's a joke in my family that
if it's rare, I'll get it and I never react normally to anything. No clots in the leg or other organ. Oh no, I have to have a huge clot in the main artery that's big enough to shock a bunch of cardiologists and cardiac surgeons. And, just to make it even better, there's not a speck of plaque anywhere else in my arteries.

I take Coumadin, which is a major blood thinner, plus Plavix and Lopressor for blood pressure, though the cardiologist is thinking about taking me off the Lopresser because I now have low blood pressure. I constantly have to check every medication and vitamins again interactions with the coumadin.

It's funny about medication. Whenever the ER or hospital, there always comes the question of whether or not you do recreational drugs. I simply tell the doctor that I take enough prescription drugs, what would I need recreational drugs for?

Oh yeah, I now have the fun of telling all my friends (mind, I 've know these people since I was 15), that things have gotten worse. Oh joy. It's funny, they made a big deal about the heart surgery, but I still can't get them to realize that the pancreatitis is the most serious of illnesses. I know it's not as hard as having your hubby not believe you, but it's still hard. Plus, one of those friends is my ex-fiance. He couldn't handle dealing with the health problems and the relationship fell apart.
So much for my complaints.
Kimber

Just a short note. I haven't posted lately, but you all have been in my
prayers, especially those who have been having so many bad days and
experiences lately: Henry, Anna, Linda, Christine, Tammy and Steve, Debi,
and Rich.
February 11, this coming Sunday is World Patients' Day, a time to pray that
patients get the medical treatment they need, that they are helped to find
some meaning through their illness, that volunteers be encouraged, and that
those involved in giving medical treatment be aware of the ethical, personal
issues that come with their responsibilities. (I learned this through a
short note I read in Japanese so I don't know the official English name of
the day.) I'll be talking about this day at the hospital chapel on Sunday
and will remember you all at that Mass.
May you all have a good day and may your medical professionals be sensitive
to the complications of this strange disease.
Blessings, Dave

In a message dated 2/7/01 10:54:21 PM Eastern Standard Time,
hominid2@... writes:

Debi,
mine started out the same way, though mine has a tendency to be the worst
at night. Maybe that's
because my body is really on a evening clock, even though my work hours are
early on weekdays. My
body reverts on weekends and i don't get up until around 11:00am and stay
up until midnight or 1am.
When I was a teenager (and only had had 1 documented case of pancreatitis)
I had
a lot of times when I was diagnosed with major constipation. Now, when I go
into the emergency room, I
tell them right off that I have chronic pancreatitis and that I'm fairly
sure I'm having an acute
attack. Then I give them my packet of information.
What they usually do for me, is give me an IV, and pain medication, take
blood tests, X-ray or
Ultrasound and then admit me to the hospital. Unfortunately, by that point
of an attack, all they can
really do for you is give you an IV, pain meds and no food or water or
anything else by mouth. Of
course, since I've got other medical complications, they have to admit me.
Because I'm on blood
thinners, they have to give me shots or IV forms of blood thinners or risk
heart failure (I have a
major blood clot (1 1/2 inches in length)in my heart and had to have bypass
last year as it caused a
heart attack - mind you, I'm only thirty this year. That's how I found out
I had a genetic blood
clotting problem).
Kimber

Dear Kimber, I am so sorry that you have not only pancreatitis but a blood
clot also. You certainly have had your share of illnesses. I hope and pray
that something soon will be invented to help people with this terrible
disease. Shirley

Hi Doug,
I'm not sure that I've ever seen an explanation of exactly how the
degeneration in MSA occurs or if they even know for sure. I do know that
they observe glial cytoplasmic inclusions in oligodendrocytes which are one
type of glial cell. They also observe neuron cell loss in various parts of
the brain.
From: http://www.neuro.nwu.edu/meded/MOVEMENT/msa.html
"There is neuronal loss and gliosis in the inferior olives, pons,
cerebellum, substantia nigra, locus ceruleus, striatum and the
intermediolateral column of the spinal cord. Typical but not specific to MSA
are argyrophilic inclusions containing accumulations of tubules.
Alpha-synuclein has recently been shown to be accumulated in glial
cytoplasmic incusions. Alpha synuclein is also a component of Lewy bodies in
sporadic Parkinsonism, dementia with Lewy bodies, and a rare variant of
Alzheimer's disease with abundant Lewy bodies (Tu and others, 1998). This
is in distinction to the "tau" rich inclusion bodies found in most types of
Alzheimer's disease and PSP. Depletion of catecholamine neurons in the
rostral ventrolateral medulla is a consistant finding in patients with MSA
and autonomic failure. (Bennaroch et al, 1998)."
This lecture from 1997 gives alot of details but obviously there have been a
few more discoveries since then.
Cellular and Molecular Pathology of Multiple System Atrophy: A Review and
Recent Developments
by P L Lantos http://brainpathology.upmc.edu/vol7/0704/KL52.HTM
This page gives some info on types of glial cells:
http://faculty.washington.edu/chudler/glia.html
Regards,
Pam

Pam,
These articles are interesting in that the authors know what they are talking about. They point out that research is already being held up by the Bush administration and that his study group has postponed it's scheduled April 25 meeting indefinitely. It is also interesting that unlike Clinton's study group that had known members, Bush's group makeup is totally hidden. All attempts to find out who is on the committee are rebuffed. Is this considered Top Secret? Is Richard M. Doerflinger on the committee? If so do we have M.J. Fox on the committee? Are patients represented on the committee at all? Are caregivers represented? Are other denominations being excluded?
It is also interesting that the people who have found the adult stem cells also feel that embryonic stem cell research should continue and admit that they are no where near where the embryonic research has developed.
Take care, Bill and Charlotte

Can you sent it e-mail or my address is:
Ann Johnson
1702 Bayftont Drive
Soddy-Daisy, TN 37379
Thanks

Thanks from all of your concerns about Al.
His spirits are real good, he did as me if they would give him radiation
or what.
I said I didn't know but maybe they would give him kemo, and then he said
that is when I will lose all my hair, and I said yes, you have been
complaining for years that your hair is coming out so now you won't have
to worry with your beard and maybe you hair will come back in curly and
black.
We have not been dwelling on it, it is too early to really know anything,
just a wait and see game until we get to the Dr..
Ann from Soddy, TN

Sorry I didn't get a chance to call today. I had meeting
after meeting... I will call you in the morning,if that
is still ok.
Hope your doing well today,
Debi

Hello to all... Hope everyone is haveing a good day :)
I spoke with my primary care dr, and she said she had a
letter from my gi dr that said if the symptoms persist,
he wants to do a sphincterotomy. I know it is done through
the ERCP, but what exactly does it entail? I know they
will put a stent in, but does it hurt afterwards?
My pr dr also said that she would do the pain management
side of it, but she thinks this procedure will really
help me. I guess I am not that bad yet. I think it is
easier to teach my kitty to fetch then to get answeres from
the doctors...
Advice would be greatly appreciated.
Happy Thoughts,
Debi

Doug,
I guess there aren't any references to thickeners on the links page (at
least I didn't find any). Try this as a start:
http://www.b9.com/dysphagia/199906/msg00121.html
Hope this helps---or call your pharmacy to have them order larger quantities
for you.
Rose

http://www.pharmabiz.com/interv/intrv46.asp
'Stem cell technology has the potential to revolutionize biomedical
research'
Dr. V K Vinayak, Advisor (Medical), the department of biotechnology,
Government of India, is the recipient of 13 national awards for excellence
in scientific research. Leading bodies like the Medical Council of India,
the Indian Council of Medical Research and the National Academy of Medical
Sciences have bestowed laurels upon him for his singular achievements. He
has produced over 230 papers of which as many as 130 have appeared in
leading international journals. He has had an important role in
policy-making too, thanks to his induction into many scientific and
administrative committees set up by the government. In an interview with K G
Narendranath of Pharmabiz.com, Dr Vinayak speaks about the accomplishments
of DBT in medical biotechnology with a thrust on novel areas like stem cell
technology and molecular medicine. -- Excerpts:
The consumption demand for biotechnology-driven pharmaceutical products is
increasing all over the world and more so, in developing countries like
India. Molecular medicine and stem cell technology are perceived to be areas
where substantive progress can be made in India in the years to come.
Doesn't the DBT look at these areas seriously?
Stem cell technology has the potential to revolutionize biomedical research
in the world. Already, there are interesting reports on this from countries
like the US. DBT is keen to seize the initiative on stem cells and we are
soon launching a joint venture project involving many agencies including the
industry for developing domestic expertise and facilities in the area. The
aim of the project is to use stem cells for tissue regeneration and thereby
find a credible remedy to degenerative diseases.
The project would entail substantive investment commitments from both the
government and the Indian biotech industry and institutions. A comprehensive
training programme for Indian biomedical researchers will be part of the
project. A nationwide network of biotech industries R&D setups and
government sector research bodies will take this ambitious project forward.
The department is seeking the concurrence of other wings of government like
the department of industry, and the expenditure department for this.
The project would be executed in coordination with prominent organizations
like the All India Institute of Medical Sciences, New Delhi, the Institute
of Immuno-heamatology, Mumbai, the Cancer Research Institute, Mumbai and the
National Center for Cell Sciences, Pune. These centers preserve bone marrow
cells, which contain substantial population of unprogrammed stem cells.
Major biotech industries in India are also being talked to, with intent to
expand the project parameters.
As undifferentiated cells, stem cells can show up as any organ cell. That
means, with the inducement of any particular gene, the properties of any
given organ cell could be engendered in the stem cells. We intend to draw an
initial financial support of Rs 20 crore from the government side, and
supplement it with sizeable funds expected from the private companies and
institutes. The two-pronged strategy we have drawn up emphasizes on
developing the expertise for growing the stem cells in test tube, and
preserving them un-proliferating. Preservation technology is crucial because
when stem cells multiply as they naturally do, they get differentiated and
forego the ability to adapt. Although some work has been done in the area in
India, overall, the efforts have been sketchy and objectives undefined. The
preservation of bone marrow the above centers is currently aimed to treat
blood-related disorders. Some of these centers have actually been getting
the financial support of DBT for the storage technologies called
cryo-preservation.
However, recent research in the US has shown that both embryonic and adult
stem cells could be used for developing certain cells/ organs used for
transplantation. The technology has hence obvious, proven applications in
the treatment of many major diseases such as diabetes, heomopoeisis and
heart muscle debilitation. Neuro-degenerative disorders like Parkinson
disease; Huntington disease could also be treated by stem cell -induced
tissue regeneration. Artificial bone development is another major area where
stem cell technology holds revolutionary potential. Future of biomedical
science is entirely dependent on understanding of stem cells and clinical
use. However, ethical issues that may come up regarding the clinical use of
stem cells would have to be taken care of.
What about the molecular medicines using recombinant technology?
For molecular medicines such as recombinant therapeutic proteins, the
domestic demand will grow manifold in a few years. A host of projects are in
progress in these areas.
The projects are aiming at development of important products such as
insulin, cytokines, growth factors, thrombolytic agents and erythropoietic
substances. A few domestic companies are already into indigenous commercial
production of recombinant hepatitis -B vaccines. This is at a time when both
genetically engineered and human plasma -derived hepatitis B vaccines are
being imported.
There are safety issues involved in the use of recombinant technology. The
regulatory procedure for products derived from recombinant technology needs
to be streamlined and eased. An expert committee has already prepared a set
of guidelines for this and they are being implemented. Also, a separate
regulatory body for clearance of recombinant products will be in place soon.
In a populous country like India, vaccination is seen to be an effective way
to control the spread of communicable diseases. What are the recent
achievements of DBT in this area?
In addition to recombinant vaccines for hepatitis B, vaccine research
dependent on other technologies are also in progress and has given
satisfactory results. We give importance to new technologies for vaccine
development. The government's Expanded Programme of Immunization has to
cater to about 23 million newborns against major childhood diseases and an
equal number of pregnant women against tetanus. Sufficient capacities have
already been created in the country for the production of vaccine against
tetanus, diphtheria, pertussis, BCG and measles. Polio vaccine bulk is now
being imported blended and used.
A rabies vaccine candidate has already been transferred to the industry and
the commercial production will start shortly. Besides, research is on to
develop an alternate for BCG. HIV vaccine research targeted at virus subtype
C that is largely found in India is also progressing. The National Cell
Science Centre, Pune in collaboration with Delhi University is working on a
DNA vaccine for tuberculosis. Vital research leads have already been
developed.
The Drug Controller General of India has recently given the nod for clinical
trials on a candidate vaccine against rotavirus developed jointly by the
Indian Institute of Science, Bangalore and the All India Institute of
Medical Sciences, New Delhi. With the global a market for the vaccine
estimated to be worth more than a billion dollars, the candidate vaccine is
perceived to be generating a lot of interest in the domestic pharmaceutical
industry. Rotavirus, which causes diarrhea in children, is the primary
reason for infant mortality in the world; international research focus has
long been on finding a rotavirus vaccine with variants of the virus being
detected even in developed countries like the US. The candidate vaccine is a
product of the India-US Vaccine Action Programme. Already, a host of
US-based research bodies, tied up to the Indo- US Vaccine Action Programme,
have completed the phase one study on an innocuous viral strain developed
under the collaborative project between the two countries. This strain would
be put in phase two trials in the US soon.
What is your forecast on the growth in demand for biotech products in India?
How much investment will be required in the next five years to create a
commensurate R&D and production base?
The great advances in the field of biotechnology in the world have had an
overwhelming impact on agriculture and health sectors particularly on the
pharmaceutical sector. Though there are diverse applications of
biotechnology benefiting all these areas, biotechnology-driven healthcare
products will dominate the scene. This sector is likely to constitute about
40 per cent of the biotech products consumption market by 2005.
As per an estimate made in 1997, this was 37 per cent. In the healthcare
sector, new investment opportunities exist in the production of cocktail
vaccines of DPT with hepatitis-B, hepatitis-A with -B, influenza, vericella
and meningitis vaccines. At the same time, if vaccines for hepatitis-E, -C,
HIV, and malaria become available globally, on which major breakthroughs
have been reported from abroad and in India, the demand for the products
will increase in India. Besides, there is also an unmet demand for several
animal and poultry vaccines of viral, bacterial and parasitic infections.
Most of the diagnostic products developed by immunological and PCR methods
such as those for the detection of viral diseases and tuberculosis are
currently being imported. In these areas, there is scope for setting up
local production facilities.

Linda,
I am sorry that you had a hard time too it is terrible what we have to go
through .. you never have to be sorry I totally understand and I used a few
choiced words myself all the way home from there, I don't know what the deal
was I didn't like it like my brother said what is the difference what this
came from does that mean they aren't going to treat me and that should have
been my question to them... I hope you are having a better day you are in my
thoughts and prayers...
Hugs and kisses
your pancreatis pal Anna from Michigan

Doug,
Also look into this site for a puree food cookbook:
http://www.rof.net/yp/randyw
I know we did have links to Thick-It resources too, but I don't know how to

You'll need to enter your email address to view these articles.
Regards,
Pam

Please tell me more. Marilyn in TN

Ann,
I'm so sorry to hear about Al's bone cancer. My father
also had prostate cancer, treated with radiation, a
few years ago. Fortunately, his hasn't returned so far
and his PSA is always really low. How involved was
Al's cancer when you first found out about it? I
always worry so about Daddy's coming back.
You are both in my prayers.
Melanie in OK

Ann, I am so sorry about Al's terrible news. I remember when my mother Joyce
was first told she had Parkinson's, somewhere in my mind I thought, "OK,
THAT is what she was going to get," as though nothing else could touch her
now that something terrible already had. It took only a second to realize
that my thinking was flawed.
This shouldn't happen to anyone. I have a close friend in her 60s who was
diagnosed with bone cancer about 3 years ago and is doing very well. I know
Al has a lot on his plate and I hope they can treat this along with
everything else. I am thinking of the both of you, Debbie

I would be glad to send to anyone who wants it, my mom's copy of Kathrynne
Holden's nutrition handbook for people with PD. It is especially good for
recipes that conform to the protein guidelines recommended while taking
Sinemet (but is not only for people taking Sinemet). Debbie

A VERY good resource for ROM exercises is a FREE booklet put out by the National Parkinson Foundation, Inc.
It's called "_Parkinson't Disease: Fitness Counts_"
You can get it mailed to you by calling 1-800-327-4545
It just took a few days for ours to arrive after my call.
With {{{Hugs}}}
WithPurse.jpg

In a message dated 2/7/01 9:46:05 PM Central Standard Time,
hominid2@... writes:

I showed my husband the note that says this is a birth

debi - - tell him it is just like people that have genes for being an
alcoholic, high blood pressure (which we usually don't detect until we are
older), high triglycerides, diabetes, vision problems etc; etc;. does
that make sense? the "other" debbie (ark)

You know - i wonder why in all my attacks, hospital stays etc; that i have
never had the back pain that you all talk about???? (NOT that i am
complaining, mind you) i only hurt right in the middle at the end of my
rib cage, throughout the abdomen and up into my chest like i'm trying to have
a heart attack. debbie (ark)

Thanks to all who to the time not only to answer my questions, but to
be kind and reassuring as well. You are too kind!
In answer to several of the questions that were asked, I am taking
midodrine and Thermotabs to answer the bp issues and drinking as much
as I can. My doctor feels that florinef is "unnecessary" and since
he wrote the research, I'm going to have to take him at his word!
My diagnosis began as a diagnosis of NCS (nerocardiogenic syncope)
and Fibromyalgia. The latter came due to pain symptoms I had. Once
I saw a specialist for the NCS we then realized that it was more
serious than that since other systems were involved. It is possible
that in addition to the MSA, I can have Fibro....since most of you
don't have that type of pain then I'm guessing that may be the case.
I have a swallow study scheduled for July and they are talking doing
a permanent catheter for me for the other issues. I'm not thrilled
about either, but I need to do what's going to be the best for the
long term.
I had never explored the bookmark page, that is great!! Thanks for
sharing.
Is there a good site that has ROM exercises? I see a PT in July, but
perhaps that would help with the pain and weakness prior to then. I
use leg weights and do lifts in the evenings and until my new one
gets here I'm using a manual chair...which is a big workout as the
school where I teach is huge and on different levels! I've been
cautioned against upper body exercise since it works against all the
blood flow issues that I work on, so that's why they approved the
motorized chair.
Thanks again for all your help!
Catherine

In a message dated 2/7/01 6:16:55 PM Central Standard Time,
dvdsterritt@... writes:

Well, the nurse just called and said that they will call
me in come Vicodin, just this once. She said that my dr
doesn't prescribe pain killers. So, I either have to call
my primary care dr, or get a pain specialist. Has anyone
ever heard of such a thing? How can he know about chronic
pancreatitis and not prescribe pain pills? I think it is
time for a new GI dr. Does anyone agree?
Sorry to be a pain...

i had that same problem with my first gi doctor that was supposed to be so
fantastic (so everyone told me). he would never give me pain meds or nausea
meds - just let me go back and forth to the hospital. then my primary care
dr. gave me some and then i had to change primary care drs. and thank
goodness - - he has two other panc. patients and he is not into letting
people suffer. i go see the new gi drs. (there are three i can be seeing)
feb., 16. i kept waiting for someone to call me from uams and someone had
dropped the ball. i left messages at drs. exchange and i finally got
through to someone and she said they should have made an apptmt for me 3
weeks after the ercp in november. oh well - -. yes - i would seek out
another gi. i went way too long not getting any information or support.
time is too short to not get the help that we need. uams that i am going to
now is a teaching hospital in assn. with univ of ark and the gi dept is
supposed to be world renown (sp?) i know that the drs there can up with
some kind of stimulator for a lady that had bad stomache/intestinal problems
so that she can stimulate her digestive system to work. she had been on
feeding tubes only previously. they had it on television here as a local
story, so i am hopeful that they will help me more than i've had in the past.
i am NOT nearly as severe with this disease as most of you are, i think.
but even a little bit of it goes a long way! ha. i pray for all of you
daily.....your are "my group". i appreciate all of you so much!
debbie (ark)

Ann,
Rob and I are so sorry to hear about Al's bone cancer. Having
SDS/MSA is bad enough! How are his spirits? And how about you? It
is aa tough thing to have to deal with. Please keep us posted on how
he is doing, both physically and mentally. Be sure the doc's who
treat his cancer understand the symptoms of SDS. Based on what I've
read on this list, I wouldn't be surprised if his reactions to the
medications they will use will be different from most people's.
Our prayers are with you both.
Carol & Rob
Lexington, MA

In a message dated 2/7/01 6:11:08 PM Central Standard Time,
sunflower6668@... writes:

From what I have seen on this board, when pancreatitis progresses
past a certain level, an endocrinologist is on board the team of
doctors. Is that a fair assumption?

hi christine! good to see YOU writing more messages also. they had me
seeing an endocrinologist back in 99 and first part of 2000, but then the
dr. was taken off my insurance plan and then noone ever sent me to another
one so far. there wasn't anything at the time that he could see that he
needed to do for me anyway. i hope that they will be able to tell you
something about your liver. in my medical reports from prev hospital stays
it mentions that i have a "fatty liver." but none of the doctors ever told
me that or explained what that meant, etc;. anybody know?
thanks, guys. debbie (ark)

Just sitting around watching all of the tributes to the service members of our country.

Am watching Oliver North's program now on Fox News.

Lots of tributes to those gone and still here with us.

I am sorry to here about Al. It seems there is no end to the suffering the MSA folks have. There is always something.

Please know you are remembered this evening at the top of the prayer list.

It breaks my heart to read of all the pain and misery but I know from experience that only the Lord can get you through the horror and the fear.

Don't give up.

Love to you from Texas.

Barb in Arlington

[INLINE]

--
"The Amen! of nature is always a flower." Oliver Wendell Holmes

Has no one written anything today I have 0 e-mail what is going on?
Ann from Soddy,TN

Dear Anna,
Wow! You have had it rough, huh? I thought I had a hard time in
the hospital the past 2 days. What in the hell is wrong with these
doctors? I just don't understand it. Why did they give you such a
hard time about the drinking? That really sucks - the treatment you
received. And this is a teaching hospital? Wow, sure does scare the
hell out of me! I have put together a binder with all kinds of info
about anything & everything associated with pancreatitis. Next time
I go to the doctor, or ER, I'm taking it with me, and if they give me
a hard time, I'm gonna tell them, here read up on this, maybe you
will learn something about pancreatitis! All these quacks in Spfld.,
OH are such jerks! I can't stand any of them! This just made me
even madder when I read what you have gone through. I just can't
believe this treatment all of us has received one time or another
during this terrible road we walk with this illness. Please, except
my appology for all the buttholes in this world who don't know what
they are doing! Sorry about my profanity, but I'm just so mad at the
world right now, I usually can control myself, but today,
aaagggghhhh........................I'm really mad!
Please, take care, and I hope you are doing better now. Sorry I
didn't get a response sooner, but I was in the hospital getting
almost as bad treatment as you. Yours was alot worse, actually, but
still mine was awful! Please, let me know how you are doing?
Lots of Hugs, Linda

Hi,
Ann from Soddy,TN. well I have not been writing for a long time.
Al had a bone scan(he had prostate cancer in l995, was treated with
radiation).
His PSA has been rising and he opt for his testicles to be removed a
month ago.
The VA Dr. (witch seems to be really a very good internists) had an X-ray
on the pain that he was having in his hip. After the reading he
scheduled a Bone scan.
Well we got the BAD NEWS he had bone cancer. The Dr. from VA called and
asked if we had a urologist in Chattanooga and I said yes, he said that
we could see him or go to Murfreesboro( a 3 hour dive one way) or.
we opted for the Dr. in Chattanooga. so we are waiting for all of the
films and reports to come from VA. and then we will go from there.
Keep us in your prayers!
Ann from Soddy,TN

Hi all,
Much of this is a problem with reporters writing stories about research they do not understand. They take the sensational statements and make them the "facts". The reporter asks "Can this cure PD?" and the researcher says "We don't know, but it is possible" and the story says we have a cure for PD. We DO NOT know if pluripotent stem cell research will cure PD in humans - we do know that it cures chemically induced PD in mice and we want to test it on humans. This is the next logical step in finding a cure.
All of this research they are talking about is years old. McKay at NIH has done the most recent work which showed a cure in mice and reported it this spring in medical research talks. This work is being confirmed by other scientists such as the Italian work mentioned yesterday and today by Pam.
In the meantime the false info being put out does not help at all. There are many "news" stories about the "disasterous" results of fetal tissue transplants, and comparing fetal tissue transplants to stem cell research. First at least 90-95% of the people who had the transplants were not harmed in ANY way most were helped - some by as much as two years. A few people got more dykskinesia but the number was less than 10% by ANY accounts and most reported less than 5%. When I was told that my kidney operation could result in a 15% death rate - I still took the operation. Let's get real. The rate of chemotherapy for cancer is no where near that good.
It is a shame that people feel they must lie about research to stop it. The other lie is that this is still fetal tissue - these cells have NEVER been in a womb and it takes at least 28 days in a womb to make a fetus. Since there is no womb involved with these cells, it can not be abortion either.
Take care, Bill and Charlotte
==========================================
--- In shydrager@y..., "Pam Bower" <pbower@a...
http://www.nytimes.com/reuters/health/health-stemcells.html?ex=991797194&ei=

1&en=fca95bbf148098c7
...
``But making a lot of neurons from
stem cells is not that simple,'' she
said. Several animal studies have shown
that once neural stem cells are
transplanted, they generate large numbers
of another type of brain cell
called glial cells, not the neurons that
are needed, Cattaneo said.

If I understand the etiology of msa correctly, the first cells
to be damaged in the brain are the glial cells, are they not?
Isn't the loss of neurons a secondary effect that results from
the loss of the surrounding glial cells?
To unsubscribe from this group, send an email to:
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Tammy ,,,
I am finding out how many rights I have but thanks for the thoughts and
prayers you are in mine also.... how are you doing?
Hugs and kisses
your pancreatis pal Anna from Michigan

Catherine,
This illness is difficult at any age, but it's especially difficult
for a young person with young children. I'm sorry you have to be
here on this list, but it is the right place to ask your questions
and get good answers.
My husband Rob, who will be 55 on Tuesday, was diagnosed with SDS/MSA
in March of 1998. He too has major blood pressure problems, and
would be in a wheelchair as a result were it not for the medications
he takes. He currently takes florinef (3 .1mg tabs at bedtime),
proamatine (2 5 mg tabs at 8am, noon and 4 pm) and Thermotabs (salt
tablets) 4 times a day. You didn't mention what if anything you are
taking for blood pressure, but if you haven't tried these
medications, you should ask your doctor about them. Also, be sure to
drink lots of water - at least 2 liters a day - to keep blood volume
up.
In terms of the all over body pain, I'm not sure. Many people have
neck and back-of-the-head headaches, which can be caused by low blood
pressure. Some people have neuropathy, which can be helped by
neuotonin (SP?) You might also be feeling achey from lack of
movement, caused by being wheelchair bound. My first suggestion
would be to try ibuprophen, which has a slight impact on raising
blood pressure, also. If that doesn't work, talk to your doctor. I
would avoid the vicodin if possible, since that is a narcotic and
will depress the central nervous system.
Muscle weakness can certainly come from being wheelchair bound, but
is also caused by the lack of messages from the brain. If you're not
already doing some range of motion exercises and strengthening
exercises, ask your doctor to prescribe a series of physical therapy
sessions. There are many exercises you can do sitting down, and the
clear message from this group is "use it or lose it".
I'm not aware of incontinence issues and swallowing issues being
related. Unfortunatley, the medication to help incontinence (either
ditropan or detrol) has the side effect of lowering blood pressure --
clearly already a problem for you. You might ask your doctor about
self cathing. This seems backwards, I know, but sometimes the
problem is incomplete emptying of the bladder, wich causes overflow.
My only other suggestion is to use depends.
On swallowing, there is definitely something that you can and should
be doing -- speech therapy. You should probably have a swallowing
study to make sure you're not aspirating, and it would be a good idea
to ask your doctor to prescribe a round of speech therapy, that will
also address swallowing issues.
There is a good assortment of ideas on symptom management on this
site. Click on the "bookmarks" link on the left hand side of the
page, then go to item c, which is Symptom Management. If you click
there you will find a whole list of problems and the ideas we have
come up with on the list to help address them.
Finally, where do you live? There may be a support group nearby that
could also be helpful to you.
Good luck,
Carol & Rob
Lexington, MA

If I understand the etiology of msa correctly, the first cells
to be damaged in the brain are the glial cells, are they not?
Isn't the loss of neurons a secondary effect that results from
the loss of the surrounding glial cells?