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In a message dated 2/5/01 5:51:51 PM Eastern Standard Time,
liamhoha20@... writes:

? Can I tell them I want to be admitted?

Dear Linda, call your GI and tell him you are still throwing up and have him
call the hospital and have you admitted. What do you think? I hope you stop
throwing up. Are you dehydrated? Be careful. Love, Shirley

Hi,

We are to be at the hospital in the morning at seven am for Daves peg tube placement. I don't think I will sleep at all tonight. I have been cleaning and moping. I should be sleeping but I am so up tight about the procedure and how not eating will affect Dave. He has been very quiet today. I think he is depressed.

Please pray for Dave.

Kathy

It has been my experience that my bp drops sometimes after meal
particularly one heavy in carbohydrates. But it comes back on ts own.

Mary, I am glad that Warren is back home. Hope you can both get some rest.
Debbie

Erma,
There are a couple of things that could be affecting Dales's blood
pressure. One, of course, is the timing of any medication he takes.
Another is when he eats. After eating, everyone experiences some
drop in blood pressure because the blood goes to the digestive tract
to help get nutrients to the blood stream.
It's good that you called the doctor, as he may need to adjust Dale's
meds. But if he seems okay otherwise, I wouldn't worry too much.
Carol & Rob

Hi gang,
Dale is having some changes in his blood pressure different than the
normal MSD ups and downs and I'm wondering if any of you have
experienced this. This morning, right after eating breakfast, while
sitting down his bp was 94/36 Pulse 68. At 4PM it is 91/49, pulse
73 while sitting and 100/58, pulse 50,while standing. I do have a
call in for the doctor but just curious if anyone else has experienced
this. I'm wondering if his body is just starting to shut down. He is
responsive and even cracked a few jokes. His sodium had been low but
now it is back to normal, or at least it was Monday when we had it
rechecked.
Thanks,
Erma Dean

Hi Elizabeth,
Thanks for the reply. It helps to know I am not alone in this. I am
sick of being so darn cold. And then waking up all night soaking
wet. Yeah, I wear a dozen layers too.....................ah well.
So, how ARE you? Last I heard better but not good. Any change? I
hope so. You are in my prayers dear.
No change here. Well, some. But not the food one. My liver enzymes
are up. Up high enough they want me to go back to U of M to do a
liver profile. And I have to do a cortisol panel as well....then, on
Monday, I go to an endocrinologist there. Hope they can help, but
watching others here makes me leery of getting too hopeful.
I have been hurting a lot the past few days,in fact, if I didn't know
better, I would think I had a stent in there. That is exactly what
the pain feels like. And the nausea is way worse. I had to take
zofran just to get some tea in me. You are probably way ahead of
me.............they wonder if there is a blockage in
there............aaaarrrrrrrrrrrrrrrgggggggggghhhhhhhhhh! Guess we
will wait and see.
The GOOD NEWS of the day is, they finally figured out that they can
combine my tpn with the saline!!!! Yeah!!!!! I get to be off my
leash for twelve hours a day. The downside being that I will be in
the bathroom a lot more all night long, but hey, I will just be happy
to not have to drag this pack around all day-I mean, it is like
having a kid on my back all day long!
So there you have it. Good news to go along with the bad. We'll see
what comes of it all. Thanks for asking. Bet you wish you never
had :-}
Take care of you girl, and let me know how you are!
Be well,
Christine

Dear Tull,
I get each message, not as a digest. It is funny, I probably wouldn't
have noticed but when someone is responding to a certain post I'll realize I
have no idea what they are talking about. I'll go through my 'filing cabinet'
to see if I just skipped over it. If it isn't there then I go back to the web
site and try to track it down. Several times I've found posts there that I
never received. I think that other people have mentioned that they miss some
posts, too. Thanks for checking up on the problem and I will let you know if
it happens again.
Elizabeth

Hi! I haven't been posting much lately. I've gotten very busy at
work. I've been trying to catch up on my panc. post reading but I'm
afraid I'm very behind. Anyway, I have a question...
A friend of mine has terrible chronic back problems caused from slipped
discs. His doc gave him some Ultram samples but he (friend) didn't like
them so he gave them to me. Bad, me, I know - taking meds that aren't
prescribed... Anyway, I haven't taken any of them yet. Has anyone here
taken Ultram? It's an opiate, right? How does it effect you?
I'm only going to take them if I have a bad attack and I'm out of other
stuff.
Hope everyone is doing ok!
Kelly

Hi all.
Thanks for everyone that responded to Warren's being in hospital. He was
able to come home yesterday afternoon. This is one time the Dr. listened to
me and kept him on his meds, tho' spread out differently in the day. They
were very supportive in everything I told them and really kept a close eye
on Warren during the night and I was there about 9 hours during the days.
He seems pretty good today tho' sleeping a lot, but he was doing that before
he went into the hospital.
The Dr. said it was definitely pneumonia and they have him on antibiotics
for another week.
I'm pretty tired but have my aide coming in tonight so I can sleep and one
in morning so i can get some shopping done, etc.
Thanks again for being here.
Mary S.

In a message dated 2/5/01 5:06:35 PM Eastern Standard Time,
hominid2@... writes:

Donna,
you might as the doctors to check the pancreatic duct for a rare
birth defect called pancreatic divisum (the y shaped duct is divided
into two ducts is basically what it is). Doctors are supposed to
check for this after the 3rd case of pancreatitis with no known cause.
Kimber

Donna, I had pancreas divisim and after 16 years of pain and attacks I just
recently had my pancreas removed and the islets transplanted into my liver.
I am doing great and eating everything. I do have to eat one half of a meal
every two hours until my body is adjusted to the changes from the surgery.
I tried ercp's, stents, everything out there. Shirley

In a message dated 2/5/01 4:44:44 PM Eastern Standard Time,
hominid2@... writes:

Shirley,
sorry I didnt' get to this sooner but I wasn't online at all this
weekend. I take Glucosimine Sulfate for arthritis. I have it in my
hands (swollen joints, hot to the touch) and it keeps it under
control. If you're worried about taking it, talk to your doctor, most
doctors recognize the beneficial effects of Glucosimine on arthritis.
They should be able to tell you if it will interact with your current
medical drugs. If they aren't sure, ask to talk to one of the
pharmacists in your local pharmacy. I'm glad you've found the file
of use. I originally started it to make a list of my medications to
give to the nurses whenever I saw the doctor so they wouldn't have to
write it all down every time I came in. It just kind of grew from
there.
Kimber

Hi Kimber, thanks for the information on Glucosamine. I have another
question. Do you find that when you are on it you have loose stool? I have
been on it for three days and have had loose stool all three days. I have
two sisters on it and it doesn't effect them that way at all. Thanks Kimber,
Shirley

Barbara:
Well at least if you were bored, you found something that was a help.
The night I didn't have much to do ,I looked at all the cards online.
You said something about family restrooms, we are lucky here in the
area I live. The Brea Mall has a mans, woman, & a family restroom,
they are putting them in around here because of the boy that got
killed a mans restroom at the beach a few years ago.I'm glad to see
that they have them.
always Vera

Hello Everyone,
I'm not doing so good. I started throwing up around midnight, and by
2:30am I had thrown up 4 times. I went to the ER because I couldn't
take it any more. There was a terrible crash so I had to wait in the
waiting room for over 2 hours. I threw up 2 more times while I was
waiting. I got lucky because it was a doctor who knew me. She
didn't even check my amylace/lipace because she knew it was going to
be normal. They started an IV, after 4 sticks ended up in between my
ring & pinky finger! ouch! They gave me nubain/phenergan, did
chest/belly x-rays and all the other blood work. By this time the
doctor who knew me was off duty. Another lady doc, who remembered
me, said all my blood work was ok, my x-rays looked pretty good and
ask if I thought I felt comfortable enough to go home. I ask her to
call my local GI & let him know what was going on, she came back &
said she talked to him, and his only suggestion was for me to get
into a pain clinic. OK, I might have missed something, but my main
complaint the last two weeks has been nausea/vomiting & increased
pain, but how can a pain clinic help with the nausea/vomiting? She
said she was leaving it up to me, she could have me admitted under my
GP, and my GI said he would see me if I was admitted, or she could
give me another pain/nausea shot & see how I do at home. I told her
I would go home. She told me I could always go back in if it didn't
improve. And it hasn't, I have already threw up 3 more times today.
It just so happened my nurse case manager called me this afternoon.
She was actually upset because I didn't have them admit me. And she
told me if I didn't get any better to go back & be admitted. Can I
do this on my own? Can I tell them I want to be admitted? I was a
little confused. Now tonight my throat is very irritated, and my
nausea is increasing as I speak. Oh well, it seems like all I do
anymore is come on here & whine & cry about my problems. Also, they
took my father in law back to the hospital this afternoon. We have 2
hospitals here in Spfld., and the one we usually go to is completely
full, so they had to have him admitted to the other one. He has
pneumonia again. Poor guy, he just can't win!
I hope everyone is doing ok. I have read all of the post, but I just
don't have the energy to reply. I'm so sorry. Please, when I get to
feeling better I will try harder. Thanks everyone for being here for
me, again.
Lots of Hugs, Linda

Hi Anna,
Sure am sorry to hear about your ordeal at U of M. It certainly can be
discouraging when things like this happen. Makes it more obvious that there
just is NOT good information about this disease among the medical community
in general. As Karyn and other folks on this list have found, it generally
helps to have your "trusted GI" doc call the hospital where you'll be
going (esp. for ER visits) to "clear the way" for you. I think the idea of
keeping a "Reader's Digest" version of your medical history with you and
ready to present to the residents (Karyn sometimes refers to them as "that
herd of gophers" ...) is a great one as well.
I hope you can get some answers/help/relief quickly from either your family
doctor, or your trusted doctor. Karyn's GI (Dr. Sherman at IU) has always
been the one to treat her, either Inpatient or Outpatient, for Panc related
problems, once she became one of his patients. And whenever she's had to go
to the ER, she always calls him/has him paged first, and he will generally
call ahead to the ER and let them know she's coming, and what they should
do for her, etc.
This is exactly why one of Karyn's goals/visions for PSN is to provide more
education about this disease for both the general public, and more importantly,
the established medical community. There just is way too much mis-information
out there, which causes them to approach pancreatitis with too many
incorrect pre-conceptions. Add that to the fact that they probably only are
half listening to you while they try and write down your "history", worry
about 10 or 20 other patients, and the financial aspects of treating patients,
and this kind of thing is bound to happen. It's shocking that folks who have
graduated from medical school even within the past 5 years are still being
taught some of this outdated information. We've got to find a way to change
that!
OK, I'm off my soap box now. I'm SO SORRY to hear of yet another incident
like this, and again, I hope you can get some relief and the care you need
from one of your other doctors. The disease is bad enough - you shouldn't have
to fight the doctors/hospitals, too! But don't give up - if you can get
through to just ONE of these doctors sometime, it will make a big difference
in the end, for yourself, and for others who follow.
Take care,
--Tull

Donna,
you might as the doctors to check the pancreatic duct for a rare
birth defect called pancreatic divisum (the y shaped duct is divided
into two ducts is basically what it is). Doctors are supposed to
check for this after the 3rd case of pancreatitis with no known cause.
Kimber

Hi Mary Ann,
Have you tried different styles of pillows? I am wondering if one of those
foam pillows that is designed to relieve neck pain would help with your mom's
shoulder pain. If the pillow is high enough if might offset some of the
pressure that is currently going into her shoulders. I don't know where you
are in Minnesota, but if you are in the Twin Cities I am sure you can find
plenty of stores that carry them - like Relax the Back, or even department
stores.
Good luck,
Cindy V.

Shirley,
sorry I didnt' get to this sooner but I wasn't online at all this
weekend. I take Glucosimine Sulfate for arthritis. I have it in my
hands (swollen joints, hot to the touch) and it keeps it under
control. If you're worried about taking it, talk to your doctor, most
doctors recognize the beneficial effects of Glucosimine on arthritis.
They should be able to tell you if it will interact with your current
medical drugs. If they aren't sure, ask to talk to one of the
pharmacists in your local pharmacy. I'm glad you've found the file
of use. I originally started it to make a list of my medications to
give to the nurses whenever I saw the doctor so they wouldn't have to
write it all down every time I came in. It just kind of grew from
there.
Kimber

Hi all,
Just came across another article about childhood pancreatitis. This was in a
"Question/Answer" section of a site called the Child Health Forum.
--Tull
*************************************************************************
Subject: Re: Pediatric pancreatitis
Forum: The Maternal ~ Child Health Forum
Topic Area: Childhood Disease
Posted by HFHS.M.D.L.M. on February 15, 1999 at 07:57:25:
In Reply to: Pediatric pancreatitis posted by celia on February 06, 1999 at
16:53:52:
: My 10 year old has had two attacks of acute pancreatitis. These seem to
come on very suddenly and be unrelated to any condition such as diet or
trauma or drinking alcohol, obviously. There seems to be no treatment
except morphine for pain and intravenous fluids. There seems to be no
literature on childhood pancreatitis. Can you give me any information
about the cause, prognosis and any preventative steps we could take.I
submitted this question to the Gastroenterology Forum and it referred me
to this section. Thanks, Celia
Dear Celia :
There are many causes of pancreatitis in childhood , viral etiology
including mumps , infectious mononucleosis , influenza A, german
measles , and Coxsackie B virus .
These would produce a clinical picture of acute pancreatitis with severe
epigastric pain , severe enough to cause the child to assume a sitting
position , radiating to the back , persistent vomiting and fever .
If the pancreatitis is due to a viral uncomplicated infection , the prognosis
is good .
Other causes include abdominal trauma , obstruction of the pancreatic
drainage system by biliary duct sludging or pancreatic protein
precipitations , hereditary ( familial cases have been reported ) , drugs ,
and numerous systemic diseases which make diagnosing a cause for
pancreatitis quite difficult unless other manifestations of the systemic
disease are apparent at the same time or prior to the attack .
If your child has had two episodes of pancreatitis ,a gastroenterology
consult is necessary . A search for other possibilities such as
hyperlipidemia , hyperparathyroidism , ascariasis and cystic fibrosis is
warranted . Plain abdominal X-rays maybe done , an abdomial ultrasound
and or an ERCP to exclude pancreatic drainage system obstruction (
please discuss the need for all these investigations with the
gastroenterologist as some may not be indicated in individual cases ).
Management of an acute episode may include taking nothing by mouth ,
nasogastric suction , pain medication , IV nutrition ( TPN ), very rarely
would surgery be required .
If the cause is unknown , there is little you can do to prevent recurrent
pancreatitis . A care plan is necessary to be discussed with both the
pediatrician and gastroenterologist on when to bring your child for
follow-up and when hospitalization is required .
Thank you for your question
Disclaimer : this information is presented for educational purposes only.
Your physician is ultimately responsible for diagnosis , and treatment .

Pam and all,
I happened to be watching TV Sunday morning. There was a clip in the show
about the benefits of horseback riding, how it helps with maintain your
balance. The people that have the horses, cater to the handicap person. It
builds confidence and the muscles used in the trunk area help to improve
your balance. Maybe a horse stable is something to visit!
Mary Ann-MN
From: "Pam Bower" <pbower@...

Hi Everybody,
I need some input here. Mable,(my Mother) who is in the Nursing Home has a
lot of pain in both shoulders. She needs to sleep on her sides. Part of the
night she is on one side and then on the other. In sleeping this way, she
wakes up with very sore shoulders. I realize there is pain medication. Is
there some way I can revise her mattress or pillows so her shoulders are
more comfortable? Maybe somebody has already experienced this and found a
solution. Mother, can not sleep on her stomach, or back. She can not move in
bed. She sleeps where they put her. Sometimes waking up with a sore neck
also due to the wrongly positioned pillow. All input is greatly appreciated.
Mary Ann-

http://www.lifelinesys.ca/english/publications/fitness.html

Anna,
Send me your home # so I can call you, Please! I was gonna call you
at the hospital today!
Love, becky

Donna
I have been a member of this group for a while, but I do much more
reading than posting. I, also, am the mother of a child with
pancreatitis. My son, Joey, is 11-years-old and has had pancreatitis for
6 years. The doctors have no idea why. I don't want to scare you with
all that he has been through, especially because everyone is different.
I do want to welcome you and hope that somehow we can help each other
deal with this terrible disease. We live in western Massachusetts and
have to travel to Boston for Joey's care (about a 3 hour drive). We have
two other children, Katie, 14 and Stevie, 19 months. I'm sure you have
realized by now, that there isn't much information about pancreatitis in
children. We have to deal with pediatric specialists as well as adult
specialists because it's so rare in children. Please feel free to
contact me either through the group or if you would like to e-mail me
personally.
Suzanne
On Mon, 05 Feb 2001 02:58:06 -0000 DJWmck@... writes:

Hi All,
Well, I am home and I know I shouldn't be but I couldn't stay there .. I
went to the U of M hospital yesterday, since they said they wanted to run
test and do another ERCP with a spictoromoy and stent placement, Well I
thought I would get there and have Doctor Elta who had been my GI there since
I have been going there but I have only had to stay in the hospital over
night there before and that was after my first stent placement and I had a
fever so they keeped me over night to make sure I was OK to go home which the
next day it was fine so I got to leave will this trip there I got right into
my room and was told to put jammies on and someone would be right with me
this is at 12 noon, then about 1:30 a resident came in, wooo hoo that was
fast... and he went on to ask many questions about my history, and of course
how much I drank I told him that it had been mo. before my first attack that
I had a drink and he asked how much I would drink I told him when I would be
out I would have a few I never drank at home at all.. we he left and another
doctor came in he had his questions, told me that they were going to do the
ERCP today I asked if it was going to be Elta he informed me that when you
are admitted to the hospital it is a different group of GI's that work on you
which I didn't or understand since Dr. Elta had done 4 ERCP's on me and that
is who I wanted but thought OK.. so he left anyway and I finally at that
point got some oxycontin 20 mg. for pain which didn't really do much so then
they give me 4 mg. of Morphine which that helped but I had to wait for 3
hours after the oxycontin for that.. then I got 40mg of oxycontin at 8 again
to try and help in the mean time I remembered that I should tell them about
my panic attacks so I asked to talk to the doctor again and of course he
didn't come so I finally told the nurse to please tell him. and that I
usually take one the night before and the morning of well I never got one
last night and this morning I got up and asked him when he came in and he
just said as he is walking away as if he didn't care we will get you
something I waited an hour and didn't get on so I took one of mine.. then as
I am laying there my iv site starts to hurt bad and I look at it and it is
puffy and red so the nurse come in and said yes it should come out.. so they
took it out and about hour later they put another one in now both arms are so
sore due to the week in the hospital here they kept blowing my vanes one time
it took 6 tries and another 5 times so both arms are sore where there was a
iv and where they tried to put one... they were running TPN threw the iv so
it was harder on my vanes and the fact that they have had 9 mo straight of
this poking at they are just giving up on me...But the nurse there got it in
with one try ... then I was just kinda laying there sleeping in between
people coming in, when one of the residents came in started asking questions
I was woke up so I don't remember what started it but she asked about the
drinking and I said it had been mo. and she said 2 weeks and I said mo almost
a year now and she said are you sure.. well that got me upset I said Yes I am
sure it was mo. before my first attack in May well then this other Doctor
came in and said you had drinks last week and I said no I didn't I should
know, I got out of the bed and said I have watched my brother deal with
pancreatis for 20 years and I know what drinking would do I wouldn't do that
to my body or my health and he still said we were told you have 2 or 3 a week
and I said yes before the pancreatis but haven't in mo.. almost a year and he
gave me one of those looks and I said get me the papers I am out of here and
he said a few things don't remember what But Vic was upset too and gave it to
them .. He asked who told him that and they said it didn't matter and he said
yes it does she hasn't done this to herself and that is what you are saying
.. I got dressed and one other residents that came in and I looked at him and
said did you tell them this and he didn't say anything and I asked that in
the blood work did they do an achocol level and he said no and I said if you
think that then you should have then you would know I haven't drank... so I
signed the papers and left there.. I am not feeling much better and I don't
know where I should go from here I have an appt with my family doctor Wed. so
I guess I find out more there... I am sure they are there thinking that I got
mad because it was true but it was just the icing on the cake at that point I
felt like a number there and that they didn't care, oh I forgot now I was in
for an attack and don't think it is better but the one resident came in there
this morning and says after the ERCP do you think you will be able to go home
,,, I looked at him and said you are then doctor what do you think? I feel
like shit and this ERCP can make this attack worse but you do what you
want...it was like we will do this ERCP and get you out of here so that we
can get someone else in here and take there money too.. who cares if you
might be sick... I am so upset.. I mean to have the attack less then 2 weeks
from my surgery that alone upset me.. then to go there a feel like just a
number going down the line do what we have to her and out she goes...I don't
know if I will go back there I am so let down, I really liked Dr Elta and
felt that she cared, then to get this bunch and feel like that could care
less.. and I don't understand this if you are in the hospital you have a
different doctor then you do if you do it out patient...what is that...?? Am
I wrong? should I have stayed there? Is there caring doctors out there? I am
so depressed and let down and lost...what do I do now???
I am sorry for the length of this all but I wanted to update you and let you
know what is going on .. I haven't read the post there is so many from being
gone for a week and I am not feeling the best but I will read them all thanks
all for your prayers and thoughts... I am signing off for now I hope everyone
has had a better week then I have...thanks for listening...
Hugs and kisses
your pancreatis pal Anna from Michigan

Hi Elizabeth, all,
I'm kind of acting as the "list moderator" in Karyn's absence (while
her PC is in the shop), and noticed your post about a problem with
receiving the posts from the list. Do you get the posts sent
individually, or as a "daily digest"? When you notice that you have
missed some posts, do you do that by comparing the individual
messages

Dear Debbie,
Boy, did I miss something!! I didn't realize that you had your gall
bladder out in Nov. 2000!! Where was I? I am sorry that I missed it. The only
reason I can think of that I didn't know was because I very frequently don't
get sent all the messages from the group. I am noticing it more and more
lately but maybe it was happening back then and I didn't pick up on it.
Anyway, how are you doing these days?
Elizabeth

Hi: These usually are sponsored by the local hospital. At least the one
in Salem, Oregon is. It cost $35.00 a month and connects to the hospital.
If Jack had a problem while I was gone, he could push the button and it
would contact the hospital. They have my cell phone, neighbors phone, and
sons phone. First they try to call Jack and if he does not answer they call
me and the neighbor. If no one responds, they call the Paramedics to come
check. Hope this helps some. It is well worth the peace of mind that if
there was an emergency, help would be here in minutes. Since we only live
three blocks from the fire station, it would be fast even with the
pre-checking. Hugs, Judy

Hello Cameron,
Did you get my last e-mail? I was having problems posting...don't
know if it worked or not.
Have a great day!
Tammy from IL

--- In pancreatitis@y..., MLockridge01@c... wrote:

Kathy:
I can understand you feeling bad that Dave is going to have a feeding
tube, but you have to keep strong to help him and I'm sure he will
understand that you need to eat. Take Care of yourself also, it's all
for Dave in the long run.
Always
Vera

Hi Dee, I know it is hard for your mom and you. Encourage her to talk to your dad while he can make decisions, it will be so much easier for her. I talked with Dave several times about his wishes, what he wanted me to do about certain things if he couldn't speak for himself. Thank goodness I didn't have to make the decision for his feeding tube, he was able to make it.
thank you for your prayers, Kathyl

Hi Jeanie, thanks for your prayers. We are trying to prepare for the feeding tube and we know it is for the best. I will never eat or drink in front of him again. I have a utililty room that is under the carport with kitchen cabinets and also a double sink. I am going to move the coffee maker and microwave out there. I am trying to find a hot plate. Dave won't like it but there is no way I can eat in the house, not the way he likes to eat.

Please continue to pray for us and I will do the same for your family, Kathy

Henry,
Thank you so much for your letter. I realize in reading through your
medical history that there are many avenues which may be ahead of us. This
is received as good news. As our doctors are being so reserved and provide
somewhat limited information to us, we have been concerned as to ANY
procedures being out there other than the scope work which lies ahead for
Cameron. I feel a little easier in knowing that yes, there are other
possible avenues of relief.
We are hoping Cameron stays healthy enough to get through the school year
before he HAS to have the scope work done. He has had a very quick recovery
from this last episode and actually went to school this morning. (He got out
of the hospital Thursday.) He has been tested in the top 1/2% of the nation
in IQ, therefore he is well-advanced in his school studies. He is a virtual
"cash cow" for the school district, so they are willing to work with us on
his absences from class. (The schools here get state funding depending on
academic achievements of the students.) He is a second grader working on the
7th and 8th grade levels.
Cameron is such a wonderful child. ( I guess all parents feel that way.)
He deals with his hospitalizations well, however he has an emotional "dip"
when we finally get out and home. Last night was his low point (emotionally)
from the most recent hospital stay. He has learned to cry his little heart
out in the shower and let his sadness go down the drain with the water. He
often asks why God made him sick. I can only tell him it is for a reason,
perhaps to make him stonger for something that may lie ahead in his life. He
never crys in the hospital and the nurses "hang out" in our room when we are
there. He has learned to beat most all of them at Nintendo.
He was so excited last night when I told him I found this group online. He
told me this morning, as he was going to school, that he couldn't wait until
he got home to see if anyone wrote us back.
Thank you for your kindness and for responding to my email.
Donna

Hi there: Does anyone know about the medic alert system that works when
you press a button, which is worn on a necklace? I think when the button
is pressed, it alerts the EMS. This would be good to have, if one falls.
I've seen it advertised recently on TV..but didn't get the number.
Thanks for your replies. Regards, jerrie

Not much you can do other than what you are doing and to remember to lay low
for this time. Sorry.
Also, you cannot modify others feelings or emotions. That just cannot be
done. That you just have to wait out like a Panc. attack.
Poncho

Hello everybody,
I am having a bad day and just need to talk to someone. I have
been hurting with this since Saturday. I feel like I probably need
to go see a doctor but haven't yet. Actually my pancreas is calming
down now...no vomiting since Saturday. My middle part of my back is
very sore besides my front side. The nausea comes and goes. I am so
tired and dizziness has been coming and going...is this part of it
too? I have mid-terms this week so I cannot go into the hospital...
I need to feel better...what can I do? I take Vicoden for the pain,
ginger root for the nausea, and I am taking Enzymes (not prescription
type). Dr. Sherman is my doctor, from Indy. He is very good, but he
is 2 hours from me. My local GP doesn't know a thing about chronic
pancreatitis..at least he was honest with me. I was just diagnosed
with this in Dec 2000. I have been having mild pains up until Saturday
when it really hit me. I don't want to sound like I am on a pity
pot...but I feel alone!
My husband acts like he is mad at me. He says there is nothing
wrong, but he is not himself. He normally is right there for me.
I need to know...is this his way of accepting this disease or what?
Should I just leave him alone and give him time to adjust and go
through the stages...anger, etc... Its driving me nuts to see him
like this...he is another reason I will not go to the ER right now
...besides my mid terms this week!
Sorry for all of my whining right now. I know there are many of
you that have it much worse than me...my heart goes out to all of
you!!! And for those who have children with this disease!!!! I am
new to this group, I read the posts as often as I can...and I do
know that this group is absolutely wonderful and I thank all of you
for this!!!
Tammy from IL

I'm sorry to hear of your son's problem. I'm 53 and realize what my folks
thought of as bouts with the flu were actually pancreatitis attacks as a
child. We know now that we have family high triglycerides and cholesterol.
Which eventually leads to insulin intolerance, burnout and then diabetes?
Both my kids, adults now, had been tested at age 18 and suffer from this.
However, properly diagnosed and this is the KEY, properly diagnosed, it is
controllable and treatable, if started early. If this might be the cas, we
have very young children that receive meds and APHERESIS that alleviate
pancreatitis and serious damage. If he has even one attack, start now. Find
the best doctor you can. anyone on this website can tell you Pancreatitis is
a most misunderstood and neglected illness. by the medical community. May I
inquire as to what levels his cbc's are? There are many medical conditions
contributing to this disorder. Please be aggressive. Every attack (the
pancreas actually eats itself during this attack) causes permanent damage and
could even result in death. be aggressive. Paula

Dear Friends of the Pancreas Support Network,
According to published reports, Mathew Perrry, a nice unasumming, as far as I know, young actor on T.V.s hit show, "FRIENDS," has a classic case of Pancreatitis. Watch this story in the tabloid news develop over the coming months and years and see if my assumption is correct. He apparently had his second attack of pancreratitis while he was in Texas filming a "Servicing Sara" episode of the hit show. I', very sorry that this young man has pancreatitis, I hope having somewon in a high profile position will help shed light on this disease and bring in more money for research to find a cure for this dreaded disease.

Hi,

I'm back again, after quite a lengthy absence from the group. Have opted to use the digest form, as I am still very busy. have noticed quite a few changes in the names on the letters; new ones that I do not know, and some that I knew that have not been writing.

Irvin is probably doing as well or better than one would expect, but sometimes throws us both for a loop when the unexpected happens because his vision is deteriorating , etc. The last neuro visit to VA sensation checks revealed that sensation in his extremities has decreased a good bit. The exam before he had decreased sensation only to above his ankles; now it is to above his knees, and his one hand is also affected. Two weeks ago today, he was draining some air out of the water lines to our hot water baseboard. He did fine until he got to the furnace room, and mistook a propane line for a water line; the explosion that occured blew out an upstairs window , and needless to say did a good bit of damage to him. now, when he reaces for something, he usually misses it by 6 inches to a foot, but he reached into that big ball of flame, took ahold of the valve with his pliers, and closed it. That put out the fire, but he did end up with widespead burns, and had 3rd degree
burns on the back of his legs. They are now nearly healed, but he knows now why I would rather call a "handy man" for certain repair jobs, etc. That is really hard for him, because he was always able to do anything. He was always the one who was called if there was something broken in the neighborhood that no one else knew how to fix.

It is good to be back in touch.

Dorothy in Utah

In a message dated 2/4/01 9:24:50 PM Central Standard Time,
LenhartROCKO@... writes:

I think they are going to put in another stent as soon as they
are able to go in. I will keep you all updated as soon as we know more.
Keep
her in your prayers.
Your friends Tam & Steve

thanks so much for keeping us all updated on what is going on with Tammy and
Anna. So sorry that Anna is still in the hsopital. tell tammy we are all
thinking about her, also.
your friend, debbie (ark)

In a message dated 2/4/01 9:13:36 PM Central Standard Time, DJWmck@...
writes:

I am a new member here. I just "stumbled" on to this site as I was
trying to research whatever I could find regarding juvenile
pancreatitis. My son (Cameron) just returned home from his 3rd
hospital stay since Sept 2000. His cause is unknown.

Donna - welcome! I am sooooooooooo sorry that your son has this problem. I
hate to read about the children who are going through some of the same
symptoms that we adults are. I, like you, stumbled onto this site back in
Sept. of '99 when I was in the hospital. I had an attack in '97 and was
hospitalized for 12 days and had all kinds of tests run etc; they couldn't
find anything. Then from Sept. of 99 to April of 2000 I was in and out of
the hospital with severe attacks 9 different times. The gi doctor I had
would not put me on pain meds etc; (at home) - he wanted me running to the
emergency room everytime I had a problem. Both in the first bout and then in
fall of 99 I had upper and lower gi, cholen scope, cat scan, light down my
throat (but short of ercp). Then in 2000 I also had a petscan which ruled
out pancreatic cancer or tumors. In 1999 and 2000 I also saw an
endochrinologist (sp) and since they could find no other reason - they
thought the fact that I had to take medication to lower my triglycerides that
maybe the high tri count was the problem. But they came way down and I still
had attacks and problems. At this point I am idiopathic (no known reason).
They removed my gall bladder in Nov. of 2000 hoping that it would help. When
they removed it they said that it did not looked diseased and there were no
stones present, but that I could have had stuff like sand and it could have
gone on through my system with all the diarrhea etc; that I had prior to
surgery. I changed primary care physician earlier this year (and I like him
really well) and in turn he sent me to a new gi doctor at Univ. of Ar
Medical Center in Little Rock. I have managed (with the help of pain and
nausea meds) to stay out of the hospital. My last test was an ercp in
November and they told my mother and husband that they "trimmed" a little bit
where the pancreatic duct and duct from my gall bladder that was removed in
Nov. of 2000 came together. UAMS has not forwarded the ercp information to
my md and I have left messages at the gi offices there for someone to call me
- but I have not heard from them yet. I want to hear from them! I don't
know if they were just waiting to see if I had a severe problem again or
what...... Anyway - I have not written this much info on my details in quite
a while because I figured everyone had already heard it one too many times.
I do not have nearly the problems that a lot of those on this site have and
am lucky in that respect. They do not have me taking any enzymes so I just
have to not eat or get on liquids when I have a problem. I know that none of
this helps you with juvenile pancreatitis, I am just rambling tonight. This
was a bad week for me and I am just now in a "talkative" mood. You will find
a lot of information here and many people who will help in any way they can.
I have learned so much just by reading their posts and asking questions.
There are many here who are nurses and other health professionals and that is
a tremodous help with explanations of procedures and medications. There is
not a support group in my area, so I am constantly reading what everyone has
to say. I live just outside Little Rock. Sorry so long! But you WILL find
support here.
Your new friend, Debbie (Ark)

Hi all Tam talked to Anna today, she is feeling pretty bad. They moved her to
U of M today. She wanted to give you all her phone # to her room
(734)936-6428. I think they are going to put in another stent as soon as they
are able to go in. I will keep you all updated as soon as we know more. Keep
her in your prayers.
Your friends Tam & Steve

thank you Steve!!!
I will try and call Anna Tomorrow! I will also try to call Tam
as well. How is she doing? Your in my prayers!
Love, Becky

Bill:
The web address is http://www.medicalert.org/
I've had a necklace for 2 years and have felt a little secure with it. It
was recommended to me when I first was dx'd with PD. I signed up for it
over the internet, and was pleasantly surprised with the speed they
processed my order and had it in the mail to me.
They also send an id card which lists all your meds, etc. Updating your
info, etc can be done very easily. I asked the director of our countie's
EMS about med alert tags. He said emergency personnel are trained to look
for them.
Hope this info helps.
Barbara K

http://www.looksmart.com/r_search?l&izbe&key=Medic+Alert.com&search=0
--
"The Amen! of nature is always a flower." Oliver Wendell Holmes

Dear Folks,
I am a new member here. I just "stumbled" on to this site as I was
trying to research whatever I could find regarding juvenile
pancreatitis. My son (Cameron) just returned home from his 3rd
hospital stay since Sept 2000. His cause is unknown. He has been an
extremely healthy child before our summer diagnosis of pancreatitis.
I would so love to chat online with anyone who can help me find
information or just let me "compare notes".
My husband and I tried for 8 years to conceive and finally had our
son in October 1992. He is our life. And we are so lost. Please
help me if you have any ideas. We are in Fort Worth, TX and if there
is anything such as a support group for kids, then I think this would
be a tremendous asset for him to get involved in.
He is a gifted child and has been tested at the 15 year old
maturity level, therefore his comprehension of the information we can
find is quite good.
Thank you to anyone who has time to respond,
Donna

did you see my message for apheresis for you? Paula

Jim,

While it is not the best, the NIH site is influential from a "name" alone. It does keep referring to MSA as SDS and is confusing in that MSA is one form of SDS when it is the other way around, but it does say that salt can help and mentions the other problems.

The other winner is to say to them that your wife is diagnosed as multiple systems atrophy (don't just say MSA as they will confuse it with MS), and has postural hypotension; ataxia, dysphagia, and dysautonomia. Then learn the other medical terms for specific symptoms that Peg has. This gets their attention (make sure you check pronounciation out with your doctor first :o). Then warn them that if they lay her flat, her BP may go sky high and to keep her in a head up position.

I am looking into a Medical alert company that offers a bracelet and/or necklace that has a 1-800 number and a patient ID which provides a complete medical problem list and is available 24 hours a day. But I have been busy and did not follow up on the cost this week. Your doctor could write up a letter also.

The toughest sell at the ER is giving pills while you are there. Charlotte goes APE if her Sinemet is late and often she needs one in the ER, ER's do NOT like to give meds!!!! So a signed note from your doctor about timing of medicines being critical is helpful. :o) Of course, a mention of the disorder affecting autonomic function and the possibility of her heart stopping has been known to help also. :o) I have been known to pull that :o) and it did get results - they said that it was my responsibility and let me give it to her.

It may help to try warning the ER in advance with info from a couple of the best sites. We need to work on NIH to update it's site and provide some general cautionary info like this. I have written a email message and sent it to them - got back an auto-respond message that it would be forwarded to the appropriate place.

Take care, Bill and Charlotte

==========================

Hi All,

This is not a survey, its a question I have been asking myself for several months. I decided that, the people in the family who have gone through this situation, would be the best resource to ask for the information.

The question is, Which paper or study have you found the most useful in educating a doctor who is not familiar with MSA, and do it quickly?

I would appreciate hearing of your experiences and successes. I have not yet had to go to an emergency room or other walk in clinic, so I have not selected one paper to use.

I do have a family doctor that admitted he knew little of MSA and would I keep him informed with new information. I admire him for his candor. I know there are other doctors out there who will not be this honest and will not be willing to take my words about what I know about MSA. I am asking for your help.

God Bless,
Jim Stark

Hello all,
When I was put on Viokase my GI doc told me that they weren't enteric
coated and that was why he wanted me on them. The enzymes that dissolve in
your stomach are supposed to help the pain. The other kind help more with the
whole absorption/digestion problem. That is what he told me. I found that the
Viokase helped me a lot with the pain.
Elizabeth

Cindy:
I think that most people understand that there are people with
disabilities that will need help in a restroom.When I took Fred into
the woman's restroom at the Taco Bell there had not been anyone in it
when we first went in. After awhile I heard the door open and a
mother and her little girl had came in. The little girl had said that
her door wouldn't lock, but that was ok because they were the only
ones in there. I spoke up and said that I just wanted them to know
that I was in there and I had my husband with me, that he was disable
and needed help. The woman said that ,that's no problem. Most will
understand, I guess you may run across a few that won't, but then
there is always one in every crowd.
Take Care
Vera

In a message dated 02/02/2001 5:45:15 AM Eastern Standard Time,
LynneAR@... writes:
<< HI
THERE IS NON-FLUSH NIACIN IN THE HEALH FOOD STORES. I USE IT IN 500MG
LYNNEAR
Bless your heart!!! If this works, then you are my hero!!! :) I will
definately check into it. Thanks for the tip :)
Hugs,
Julie

Hi all, Monday afternoon Dave had a swallowing study, he is aspirating reflux horribly bad. Today the doctor made a decision for a feeding tube, Dave has agreed. Please keep us in your prayers. Dave has always enjoyed eating and it is going to be very hard for him.

Take care, Kathy

Hi: Sometimes I wonder why we have to travel this road, but since we do I
guess along the way we are learning what others with disabilities have had
to do for years. We are becoming a kinder world the more of us that travel
around the more others notice the needs that can only be met with change.
Restrooms that can help either men or women, diaper changing tables in both
men and womens restrooms, but mainly people who are willing to lend a hand
in times of need. We have found a great number of kind thoughtful people as
the rest of you have also.
The list has been quiet. I do wonder if many are talking to friends and
relatives regarding SDS/MSA. We have and are having a good response.
Bravo! Hugs, Judy

Hello,
I was told to never, never, never to ever have a drink of any kind ever
again. My Docs, all of them, have told me numerous times anything, beer,
wine, champagne, mixed drinks, etc. can cause the pancreas to flare up, even
in moderation. I have not had even a sip of any type of alcoholic beverage
since I found out pancreatitis was my disease.
I am not sure what everyone elses Docs tell them, but this was the info I
received from all of my Docs. As for the other problems I was told
pancreatitis can cause different problems in different people. I know that
intensive studies on the pancreas have only been going on for the past
several years so they dont know exactly what symptoms pancreatitis can cause.
I know there are several nurses in the group so I am sure they know alot
more about it than I, but this is my helpful info.
Thanks for reading, Alicia

W,
There are quite a few members in Ontario (16) Pam puts out a list about the
middle of each month (I think she forgot this month :o) There are also 3
in Nova Scotia and one on Prince Edward Island. So when Pam puts out the
list or you can go back to message list at:

Sorry to be so long in answering, but have had a really bad two weeks,
not with Al only other things.
Al My husband does take Mirapex .25mg 3 times a day.
He was diagnosed in 1995 and is still going(not real well but he does not
use a walker or cane and only uses the wc to get to the table to eat).
Hope that will help.
Ann from Soddy,TN

In a message dated 2/2/01 9:19:37 PM Central Standard Time,
hominid2@... writes:

. What I've taken to doing is having a cup of water nearby that I use to
rinse the mouth, but I
very carefully don't swallow any. I spit it out in the container, usually
the tray they use to throwup
in.
Kimber

when i am in the hospital i usually have my husband wet a wash cloth so i can
put on my mouth from time to time. debbie (ark)

Al is also taking florinef and salt tablets, and has not gained weight, I
guess it is because he still is walking around and working a little in
the yard.
Ann from Soddy, TN

Just curious if these
Dear A,
My chronic condition is idiopathic, but my family doc believes it was
caused by a virus-you know, the path of least resistance..........
Christine

Hi. My mom also takes my dad into the men's restroom when there is no unisex
one available. It is more uncomfortable for her, but my dad prefers that to
the women's. Generally, I believe the men are very understanding of the
situation and accomodate them. My mom says that people are very friendly, in
general, and offer assistance readily if it is apparent that they need it.
I have been in women's restrooms when men have brought women in who need
assistance. It does not bother me in the least so if any of you worry about
whether you are doing something socially unacceptable I think it is perfectly
okay. Just my opinion, I guess, but I hope most people feel that way too.
Cindy V.

Before I developed pancreatitis I first lost my sense
of smell after a virus. About two years later developed
tinnitus and a few years after that I got pancreatitis. I had an ercp
and sphincterotomy about 4 years ago. That has helped but
recently my pain has started to get worse. Just curious if these
other conditions which were probably viral related could have
anything to do with pancreatitis. I Have never been much of a
drinker (three drinks a month at most)
A

Linda,
Peggy is in my thoughts and prayers. So are all of you. Peggy's situation
reminds me that mine could
always be worse. You have all been incredibly helpful and supportive and I'm
just so glad I found you
all. I've spent so many years with no one else understanding just how bad it can
get and that I'd do
almost anything to avoid the pain from my pancreas. Only one of them has ever
had a serious illness
(cancer, but curable with chemo therapy, one of the few) and she told me she got
a peek into my world
and didn't ever want to go back. She's an EMT in Virginia now. I think her own
health problem sparked
an interest into becoming an ambulance driver (just got her license last month
for it).
I have a semi-remote cousin (my mother's first cousin's daughter, eek) is
showing signs of developing
the same thing and next time we talk to her mother, I'll make sure she get the
address for this
support group. It does wonders.
Kimber

Pancreatitis-unsubscribe@egroups.com

Well,
i guess I must be one of the 20%. My current GI is a woman and she doesn't even
want to try to refer
me to the doctor at UCSF, whereas the male doctor I used to have went out of his
way to make sure I
did, when I saw him, to the point where he found a loophole in my insurrance
that allowed me to see
the specialist. I have another appt. with the woman GI next week after this last
attack and if she
still refuses to even put in the referral and risk a denial, I'm going to member
services. People
sometimes seem to forget that Patient's have rights too.
Kimber

Pancreatitis-unsubscribe@egroups.com

Bill:
I know I feel the same way you do .I'll called around alot today and
asked questions. We've been to two other doctors before the doctor
that came up with the DX. The first one said that there was nothing
wrong with Fred. I'm sure that is the one that Fred's mother wants us
to go back to, because she wants to hear that there is nothing wrong.
I wish that was true, but it's not. She just doesn't see it on the
hands on like I do. The everyday stuff that we have to do. His sister
called me last night and tolded me I'm the talk with all the family.
I guess I made her list. Half of her daughter in laws she didn't
like. I wonder what half I'm on now? Oh! well got to do what you
gotta do.
Take Care
Vera

Jim:
That had to be just awful for you trying to fine a restroom for Peg
at the Airport. Thank God that there are people out there that are
willing to help and you found someone that would take her in the
restroom for you.
I know it was a relief to fine the restrooms that I could take Fred
in with me. I did worry that I wouldn't be able to take care of him
on the trip and that was one reason I wasn't sure to go or not.
When I talked to Barbara Smith ,she said that she even went into the
mans restroom to help Ken. The men didn't like it ,but she didn't
care,she needed to help Ken and at that time that was all that matter
to her.I can just picture her doing it.
Bill was talking about the Unisex restrooms, I'm glad to see more of
that. Not alot around here yet, but am finding more places with
Mens,womens and family restrooms.
Take Care
Vera

Sheila,
After I gasped and held my breath while I read, I finally let out a
chuckle...... I have two tuxedo indoor cats. Even though their coats are
very clean and shinny, I did see some dander on both of them. I figured it
was time to bathe them...I thought both together would work out better than
one at a time...thinking the other one would disappear once it heard the
howling. I had the towels in the bathroom and the shampoo. I took everything
that wasn't necessary out of the bathroom. I choose to be completely
dressed...sweat shirt, and sweat pants with socks on. Both cats are declawed
in the front, but I wasn't taking any chances. I took one cat and talked
nice to her, my husband brought in the other. Suddenly I was in the bathtub
with both cats, the shower doors shut and the bathroom door shut. The
howling started before I turned on the water. The older cat knew what she
was in for... They took turns trying to climb out the top of the shower
doors. I was persistent. Shampooing, grabbing, scrubbing, grabbing, and
combing out the loose hair. The howling was constant. That older cat was
giving me a very menacing look. I knew I had to be careful with her, she
uses her teeth once in a while. Finally after the last rinsing, I hollered
above the howling at Pete to get one of the cats and dry it... He came in
the bathroom and quickly shut the door behind him. I opened the shower doors
and as the old cat flew out, she gouged me with her back claws on my neck.
The only part of my body uncovered. Pete grabbed it and was drying it. I
sat in the cat hair water drying the other cat. It took a long time to drain
the water. I kept pulling out wet cat hair from the drain. Then it was my
turn to bathe. I figured with all hair already in the tub, I might as well
shave my legs... Later that day I was talking to my "nicer" cat, saying...
You were in a big storm with lots of water and it was a good thing I was
there with you to save you.......I think she believed me...
Well that's my story and it's a true one. My scratches are almost gone. I
used triple antibiotic cream on them...
Mom is doing well, her bronchial infection is almost cleared up. We continue
to go to water therapy which she loves and looks forward to.
Mary Ann-
From: "sheila coutant" <s.coutant@...

Dear Kathy,

So sorry to hear about Dave's swallowing problems. Will keep him in our prayers.

Ruby & Felix

Linda,
I've had similar problems with doctors, but over a different medication.
Because
the treatment the doctors are giving me to prevent pancreatitis includes zantac,
but taken 3 times a
day, the pharmacists have a fit. They only want you to take it 2 times a day
and they automatically
assume you are taking it for an ulcer. I've finally figured a way around them.
First, I ask for
their full name, thenI calmly tell exactly why I need the medication, that it
was prescribed by the
doctor for pancreatitis and that I now know who to send my next bill for the
hospitalizaton of
pancreatitis to: Them, because they refuse to allow me the treatment I need to
stay out of the
hospital. I think it's the fact that I'm extremely polite through the whole
thing that makes them
believe me. Of course, I'm not really kidding either. I WOULD send them the
bill. I usually get the
medication at the dosage I need after that.
Kimber

Pancreatitis-unsubscribe@egroups.com

After reading the article Pam forwarded about Fava Beans I had to turn to my
cookbooks as I have never tried them before. Here is a little bit about fava
beans from a cookbook called "The Complete Vegetarian Cuisine" by Rose Elliot.
Fava bean/broad bean:
"The original bean, cultivated since the Stone Age [in Asia and Europe]; can
be pale or mid-brown in color. Fava beans are popular in the Middle East and
Italy, where they are known as il carne del povero, "the meat of the poor."
Regarding dried fava beans:
"More familiar in their fresh or frozen state, dried fava beans have quite a
strong, earthy flavor. They are widely used in the Middle East. I find
their tough skin a disadvantage, but if well-chopped in a food processor and
blended with olive oil, garlic, lemon and parsley, they make a good dip."
Regarding fresh fava beans:
"Fava beans can be prepared in two ways. When they are young and tender, and
the pods not much bigger than green beans, they are excellent cooked in the
pod; just trim, then cut into even-sized lengths and cook in a little
fast-boiling water until just tender. Drain and serve with chopped parsley
and butter or a creamy sauce.
"Later, when the pods become too tough to eat, remove the beans from the pod
and cook in boiling water until tender. If the skins of the beans are tough,
and you have the time, the beans can be popped out of their skins, revealing
the bright green beans inside.
"Older fava beans can be made into a good soup. Whizzed in a blender or food
processor with olive oil and lemon juice, they also make an excellent pale
green dip, good served as a first course on top of large flat mushrooms which
have been fried in olive oil and cooled, or in a salad with lettuce and
grated carrot."
And, from Martha Stewart's Hor D'oeuveres Handbook:
Fava Bean and Pecorino Crostini
"When sliced paper-thin, pecorino and other hard cheeses become a delicate,
lacy topping for crostini. Fresh fava beans in their pods are available
sporadically throughout the spring and early summer months. The same beans
are available frozen year-round in Middle Eastern markets. The fava paste
may be made a day in advance and kept in an airtight container in the
refrigerator. Refrigerate the whole favas in a separate small container.
Buy the Pecorino in an 8-ounce chunk to make shaving it easier."
2 pounds fresh fava beans, removed from pods (about 1 3/4 cups)
1 tablespoon extra-virgin olive oil
1 tablespoon chopped fresh mint
2 teaspoons fresh lemon juice
Kosher salt and freshly ground black pepper
24 slices of Crostini (baguette sliced, buttered, and broiled to golden)
Pecorino cheese, for garnish
1. Bring a medium pot of water to a boil and add the fava beans. Boil for 5
minutes, then drain, and rinse under cold water. Using your fingers, peel
the outer skin off the beans and discard. Separate 3 tablespoons of fava
beans and set them aside.
2. Place the remaining favas, olive oil, mint, lemon juice, and salt and
pepper to taste in the bowl of a food processor and quickly pulse to create a
thick, chunky paste. Transfer the fava mixture to a small bowl and taste for
seasoning.
3. Spread 1 teaspoon of fava paste onto each crostini. Garnish each
crostini with the remaining whole favas. Using a vegetable peeler, thinly
shave the Pecorino cheese over each crostini. Sprinkle with freshly ground
pepper and serve.
This recipe sounds like it would be good as a spread on lots of things if
crostini is too dry for some people to eat. It looks delicious in the photo
she shows!
Bon appetit!
Cindy V.

Peggy is on the top of my list, Linda.
Christine

Hi Debbie,
It is slowly but surely clearing up with the diflucan. I also put acidophlus
in anything I can. I just break open the capsule and put it in.
Thanks for thinking of us.
Jean & Chrissie

Pam,
That is a very good speech on pluripotent stem cell research.
Take care, Bill and Charlotte
P.S. I wrote a letter to NIH pointing out that MSA was left out of their
announced "Neuroscience at the New Millennium Implementation Update May
2000" You sent the 1999 update - the 2000 update still does not mention SDS
or MSA and is at:
http://www.ninds.nih.gov/about_ninds/implementation_plan.htm#Research_Resources
=======================================================

Jean, I am so sorry to hear that Chrissie continues to have this problem.
I know she hates yogurt, but, again, I am wondering whether a homemade
yogurt that could be tailored to her taste would be an option. The machines
go for about $60, I think. Just a thought. Thinking of you both, Debbie

Hi Everyone. How has your week been? I hope everyone is getting
along alright. Do you remember earlier this week when I was telling
you all about the lady I use to play softball with that was in the ER
the same time I was on Tuesday? And remember I told you she said
they would probably keep her? Well, the same jerk doctor sent her
home too. She went to her primary care doctor on Wed. and he put her
right in the hospital. Come to find out the reason the ER doctor was
sending everyone home that he could because both of our hospitals are
completely full. Anyways, about my friend, Peggy, after I took the
girls to school I stopped at the hospital to see her. The infection
from her pancreas traveled to her arm! They had to take her to
surgery yesterday and made some cuts, cleaned it out and left it
open, didn't stitch it up, and left drains in. She said it took 2 1/2
hours! And I feel so bad because I was feeling sorry for myself.
She is so sick! Please, everyone, will you say a special prayer for
my friend Peggy? I feel so bad. And I'm mad at myself for being so
selfish. And another thing. She told me that they told her they had
heard of the infection from the pancreas spreading to other parts,
but had never seen a case. I was wondering if that was why I keep
getting pneumonia and that was why that pouch of fluid was outside my
lung, where they had to but the "chest" tube in the middle of my
back! Does anyone have any thoughts on this? Thanks everyone. And
please, remember my friend Peggy. You are a wonderful bunch of
people!
Lots of Love & Hugs, Linda

Hi Ms Bruner,
Re your question "burning sensation in legs"
Burning sensation is oftentimes voiced by those with MSA. About 10% of
our MSA patients have experienced burning sensations in the legs, and
maybe 5% in the arms. For most it is not an overwhelming problem. If
it becomes a problem, certain medications do occasionally help.At our
Center, we have seen positive responses with drugs such as
carbamazepine (Tegretol), amitryptiline (Elavil), and gabapentin
(Neurontin).
Velma Watkins
Vanderbilt University

Hi, Linda, I did talk to Anna again last night. She is not doing to well.
She is in alot of pain and real nauseous.. They are going to try another
stint before trying some type of surgery to make the duct larger.. (name
slips me). I will try to keep everyone informed with her situation.. God
bless everyone.
Wishing you all a pain free day.
Leon

Hi Henry,
I am so glad you are "back". How ARE you? Are you getting enough
rest? I hope you take very good care of yourself. We know that
pushing ourselves is not the answer.
A friend at work yesterday suggested that maybe I am doing too much
(like working). I told her I know, but the minute I make that change
in my mind (like working half days or whatever), I will never be able
to change it again. It would be like crossing the boundary, and I
don't want to go there.
My doc lowered my tpn to 75%. I have lost 7 pounds since Christmas,
so I am not sure how long they will keep it like that. I seem to do
okay as long as my stomach is dead empty. The minute I start to eat,
it starts all over again. I know I cannot survive on a cup of tea
and a popsicle all day-wonder what she will do with me?
Again, I was so relieved to see you again. Take care of you, Henry.
We need you!
Love,
Christine

Linda and all,
My WOMAN doctor told me just the other day that 80% of people-once
they start seeing a woman doctor-never go back to a
man...........just an interesting tidbit! I hope you are getting
some of your issues answered :-}
Love ya,
Christine

Jim,
Both Dulles (Washington) and Orlando had unisex restrooms for Charlotte. We
need to get ADAPT to help us.
Take care, Bill and Charlotte
======================

Hi all,
Here we go again! A bill has been introduced in Congress that would
allow cancer patients to get oral medicines but not MSA, PD, etc. to be
paid for by Medicare. Shows where we are on the Congress priority list
- help some but not all.
Rep. Deborah Pryce (R-Ohio), the chief sponsor of the Access to Cancer
Therapies Act in the House. Sens. Olympia Snowe (R-Maine) and John D.
Rockefeller (D-W.Va.) announced that they had introduced similar
legislation in the Senate. Sen. Snowe is the one who last year proposed
legislation to help Altzheimers patients rather than all brain disorder
patients with additional therapy.
Read the whole story at:

NIH FACT SHEET ON HUMAN PLURIPOTENT STEM CELL RESEARCH GUIDELINES
http://www.nih.gov/news/stemcell/stemfactsheet.htm

Hi Jim,
I know how you feel when your loved ones go on without you.
Somehow through the pain and the illness, as I lay down in bed
feeling horrible, in a distance I hear my childrens laughter and sounds of
them having fun, I just have to smile and thank God for allowing them to be
able to laugh for awhile to get their minds off of my pain, and so we go
on........
I wish you a comfortable night.
Carmen

I hope someone can help me. I have tried for about 1 hr to sign in on my
account. I know that I replied to the letter for my account when I first set
it up. I was trying to get into the group but it did not recognize my ID or
my password. So I went to change my password and ID and it said it did not
recognize either one of them under the b-day and zip code I gave on
admission. Then I went to get another ID account and when I completed my
registration it said I was already registered. I tried everything,

This comes from the Parkinson's Ask the Doctor list. Those on the
Shydrager list who
are responsive to Levadopa might be interested in this article about the
benefits of Fava Beans.
-----
Fava Beans, A Natural Source of Levodopa - Prolongs On
Periods in Patients with Parkinson Disease
Adapted from an article by Hulya Apaydin, Sibel Ertan, Sibel
Ozekmekci Istanbul University, Department of Neurology, Istanbul, Turkey
Appearing in Movement Disorders volume 15, page 164, 2000
Introduction
In 1913, Guggenheim identified the chemical levodopa in the
seedlings, pods, and beans of Vicia faba, commonly known as broad bean
or fava bean. Fava beans are a widely cultivated vegetable
in the Mediterranean region. Its fresh green pods in the spring and also
dry seeds throughout the year are consumed in Mediterranean cuisine.
They are prepared by cooking with olive oil and traditionally
eaten after the main meal. Fava beans are regarded as being delicious,
especially when eaten with yogurt.
Recently, in our practice in our Movement Disorders Clinic, several
patients with Parkinson disease (PD) who have fluctuations described to
us
the beneficial effect of ingesting cooked fava beans on their symptoms.
These levodopa responsive patients reported that their on period was
prolonged after consuming a fava bean meal and stated that its effect
was similar to that of Sinemet (Merck Sharp and Dohme) or Madopar
(Roche) (levodopa and benserazide).
There is precedent for this effect on Parkinson symptoms. Spengos
and Cassilopoulos described the antiparkinson effect of fava beans and
others have corroborated this finding. Rabey et al. documented a
substantial
increase in levodopa plasma levels following fava bean ingestion that
correlated with substantial improvement in motor performance. In view of
our patients observations, we elected to assess their responses to
fava bean
through an out patient open-label clinical trial.
Methods
The eight patients who previously had reported favorable effects
from fava bean ingestion agreed to participate in our trial. They were
asked
to ingest one standard portion (approximately 250 grams or 9 ounces ) of
cooked fava bean at least twice a day without otherwise altering their
dietary
habits. The medical treatment was kept constant. Their predominant
problems
were disabling motor fluctuations and dyskinesia, despite appropriate
treatment
with levodopa combined with other dopamine drugs. These patients with
PD
were asked to complete a daily diary recording the times and durations
of on
and off times during the 5-7 days of baseline assessment (without
fava bean
supplementation) and again corresponding to the 1-3 months during fava
bean administration.
Discussion
We observed a beneficial effect of fava beans in our patients
manifested by strikingly
prolonged on time and shortened off time. Previously all these
patients had been
administered higher doses of levodopa up to 800-1000 mg per day, which
failed to
optimize their on time and resulted in dyskinesia. We were surprised
by the reported
magnitude of our patients responses given the fact that previous trials
of higher doses
of levodopa seemed to provide no further benefit.
These observations are not readily explained by assuming that fava beans
are simply
a source of levodopa. For example, one patient was able to experience a
sustained
response from fava bean meals ingested on alternate days. This is
reminiscent of the
long-duration response of synthetic levodopa. Also, surprisingly,
another patient
experienced decreased dyskinesia with the addition of fava bean
supplementation and
reduction of levodopa. This patient had previously failed to respond
satisfactorily to
levodopa adjustments which would have accomplished the same result if
this was
simply a levodopa effect. A placebo effect may have contributed in this
trial but the magnitude of the reported responses raises the possibility
of other mechanisms.
For example, the amino acid milieu generated from broad bean
administrations may
favor the selective transport of levodopa across the blood-brain
barrier. Alternatively
other products derived from fava bean may complement the antiparkinson
effect.
Our experience with fava beans complements that of Rabey who described
the acute responses following a single administration of fava bean to
six patients with PD.
Rabey noted motor improvement of the same magnitude as seen following
single doses of
levodopa. Rabey also documented substantially increased plasma levodopa
concentrations
following fava bean administration and the motor response tended to
mirror these plasma
levodopa levels. In contrast to Rabey we assessed the effect of
prolonged fava bean meal
supplementation as opposed to a single administration. Elevation of
plasma levodopa following
fava bean administration has also been confirmed by Vered. Vered
noted that 40 grams
(1.5 ounces) of freshly chopped fava bean contained approximately 125
mg of levodopa.
Our patients ingested their broad bean meals garnished with yogurt,
which is rich in protein.
It is well known that as a large neutral amino acid, levodopa competes
with dietary
protein amino acid breakdown products in crossing the brain-blood
barrier: this competition
potentially results in reduced levodopa motor effects. Nonetheless, our
patients still experienced a
favorable motor response.
Some of our patients reported trying to cook and eat the dry seeds of
fava beans but did not
experience any benefit. Burbano . showed that only the fresh green pods
of broad bean were rich in
levodopa content, in contrast to that of dry matter, apparently
explaining the observations of our
patients.
Comment
Reports from many, but not all, people, document the beneficial
effects of fava beans.
Theres a question about how much fava beans to eat. Vered documented
that 40 grams of fava
beans (1.5 ounces) is the equivalent of 125 mg of levodopa
(approximately the same as one Sinemet
25/100 tablet). Yet the Turkish doctors advocated 250 grams of fava
beans (almost 9 ounces)
twice a day, the equivalent of 12 Sinemet (25/100) tablets. The reason
for the difference may have
to do with variations in the levodopa content of fava beans, differences
in the way the fava beans are
prepared, and other factors we do not yet know. Our own recommendation
is to use 3 ounces of
fava beans (110 grams) every other day. In addition to the levodopa
content, fava beans contain
fiber which helps with constipation.

There is a form letter at this website to fill in and directly fax to
your representatives to urge them to support stem cell reseach. You
can also choose to print and then mail in your letter.
http://www.stemcellfunding.org/fastaction/default.asp

From the PD listserv:
---
message from Laura Eckart, Advocacy Associate, Parkinson's Action
Network
TESTIMONY OF JOAN SAMUELSON, PRESIDENT, PARKINSON'S ACTION NETWORK
BEFORE THE SENATE SUBCOMMITTEE ON SCIENCE, TECHNOLOGY AND SPACE
COMMITTEE
ON COMMERCE
MAY 2, 2001
Mr. Chairman and members of the Subcommittee, thank you for this
opportunity to testify about important issues that arise on the cutting
edge of high-tech, life-saving biomedical research. As one of more than
a
million Americans who suffer from Parkinson's disease, this issue has
deep
personal significance. I appreciate the opportunity to submit my
testimony
for the record and am sorry I could not appear before you in person.
The Parkinson's Action Network was created in 1991 to give voice to a
community that has been largely invisible, and as a consequence has not
received the federal research investment equal to its great potential.
The
Network's mission is to educate the country and its leaders about the
need
to speed research, deliver breakthroughs and cure this dreadful disease.
Parkinson's is a devastating progressive neurological disorder that
makes
it difficult to walk, causes uncontrollable tremors, and in its final
states robs individuals of the ability to speak or move. Parkinson's is
caused by the degeneration of brain cells that produce dopamine, a
neurochemical controlling motor function. There is great reason for
hope,
however. In the last several years, scientists have made tremendous
progress in the search for a Parkinson's cure.
One of the most promising lines of research involves using human
embryonic
stem cells -- the cells made available by leftover frozen embryos
created
by and for couples undergoing the scientific miracle of in vitro
fertilization. Stem cells are the building blocks of the body, with the
ability to divide indefinitely and differentiate into virtually any type
of
cell in the human body. Scientific experts testifying before Congress
in
December of 1998 named Parkinson's as the first disorder that they
expected
to benefit from stem cells, and predicted it could be done within a
decade
-- and as soon as five years -- if the funds needed to tackle this
problem
were available.
Since embryonic stem cells were first isolated by scientists at the
University of Wisconsin and Johns Hopkins University in 1998, their
enormous potential to save the lives of untold millions of Americans has
become increasingly evident. Their promise lies in their ability to
become
life-saving dopamine cells for Parkinson's patients, bone marrow cells
to
treat cancer, insulin producing islet cells for patients with juvenile
diabetes, just to name a few possibilities.
Therapeutic cloning, the subject of this hearing, could potentially
speed
this line of research by providing a new source of stem cells. However,
before I go any further, I want to state clearly and concisely that the
Parkinson's Action Network steadfastly opposes human reproductive
cloning.
We agree with the other witnesses testifying at this hearing, who we
believe represent the overwhelming view of the scientific community,
Members of Congress and other Americans that human reproductive cloning
is
dangerous and ethically questionable and should not be pursued.
Having said that, the Parkinson's Action Network does support further
research on therapeutic cloning of cells that could be used to replace
damaged cells in patients with Parkinson's and many other diseases.
Unlike
reproductive cloning, therapeutic cell cloning will not lead to the
creation of a human being. What it will do is provide another source of
stem cells that could differentiate into dopamine producing cells,
potentially producing a cure for Parkinson's disease.
I am not a scientist, but I am someone who struggles through each day
with
a chronic illness. I speak for the larger Parkinson's community for
whom
time is not neutral. We need a medical rescue and we need it now.
Scientists agree it is possible this decade. To shut down one avenue of
medical research that could speed the pace of a cure would be
unthinkable
-- lives would be lost. With appropriate ethical safeguards, we must
aggressively pursue all forms of stem cell research in order to realize
its
potential as soon as humanly possible.
Opponents of stem cell research have tried to lump together human
reproductive cloning and therapeutic cloning and mislead the public into
thinking they are the same thing. There is virtually unanimous agreement
that cloning a human being -- creating a duplicate person -- is not
something that should be attempted. Cloning potentially life-saving
cells
-- each smaller than a pinprick -- is another story. Why shouldn't
those
of us suffering from deadly diseases be able to use one part of our
bodies
to cure another part? Therapeutic cloning could allow us to do just
that
by "growing" new cells that could replace those that are damaged or
lost.
Additionally, some argue that embryonic stem cell research is not
necessary
at all. They say "adult" stem cells may be just as effective and have
seized recent press accounts describing research on fat and placental
cells
as potential sources of stem cells and used them to argue that embryonic
stem cell research may no longer be necessary. This is simply untrue.
The potential value of "adult" stem cells is much less certain and
experts
in this field of research agree that it will take years of further study
to
determine their therapeutic potential. As Doug Melton, Ph.D., Chairman
of
Harvard University's Department of Molecular and Cellular Biology,
pointed
out in an April 22 letter to the Washington Post, such claims are
"extremely premature." He explained that "...fat cells have not yet
been
shown to be able to differentiate into cells of any kind. Nor has it
been
shown that the cells studied are truly stem cells..."
As Congress begins to debate legislation that would regulate or ban
human
cloning, the Park