My blog

Forwarded from the Parkinson's Listserv:

Dear MSA Friends,
While we were talking about restroom problems for the
disabled, a friend sent me this account of a recent
outing. She has ALS (Lou Gehrig's Disease). So far,
she has beat the longevity statistics by a few years.
She has fought very hard and refuses to give in.
Formerlly a tv journalist, she is now in a wheel
chair, unable to care for herself. Like many with a
neurodegenerative disorder, she has a sharp mind
trapped in an uncooperative body. Her speech is
extremely difficult to understand, but her eyes
sparkle and her smile is absolutely radiant. She is
such an inspiration, I get teary-eyed just thinking
about her. I have her permission to share this
experience with you, hope you will get a few laughs,
as I did, certainly some of the circumstances will be
familiar to anyone with a disability who ventures
forth into 'the general public'. Her name is Sue, the
Ella she refers to is her service dog.
--- hi ya all!
=====
Gail
gsouthwick@...

Good Morning to all, and I hope everyone had
a peaceful night.
Keep your chins up, and think Happy Thoughts!
Blessings,
Debi

I am noticing a lot of gas on the Viokase as well...
I'm calling the dr today, so I'll see if this is normal.
I'll let you know.
Debi

Good advice. Marilyn

Here is a stinker,
The SDS National meeting is in Boston one weekend (Sept. 14-15) and the
Abilities Expo is there the next weekend Sept 21-23.
So far there is none scheduled in the Baltimore/Washington area this year.
For info on them see
http://www.abilitiesexpo.com/
There are still shows in the S. CA, N. CA, Chicago, Boston, and Cleveland
areas this year
Take care, Bill and Charlotte

Alicia,
The dr said "no big deal" as far as the pancreatitis. I'm
sorry for the mix-up...
Debi

It's been 2 weeks since our fundraiser in honor of our 500th member

officially started and pledges received to date now total $7765!

We're still hoping to reach $10,000 and we need your help to do it.
If you don't have money set aside right now to give it's quite alright to
pledge now and actually send your check later if you wish. It's up to

you to follow through and send your check whenever it's convenient.

I'll be taking advantage of my employer's donation matching program

held during the month of October so that way my charity will get
double the amount.
Remember if you wish to donate to send your check directly to your favorite
charity(the list is below) and drop a note to Bill b.werre@...,

Cindy cav285@... or me pbower@accesscable.net and let us
know the amount of your pledge if you wish to have it counted in our total.
Mayo Foundation 50
Michael J. Fox Fdn 125
Nat'l Ataxia Fdn 150
Nat'l Dysautonomia Research Fdn 150 (includes $50 recently donated at the
MSA Walk)
Parkinson Society Canada 350
Parkinson's Australia 275
SDS/MSA Support Group 175
University of Michigan 500 (recent memorial donations)
Vanderbilt University 3615 (includes $2000 in recent
memorial donations)
Unspecified 2375

We would like to remind you of this upcoming event.
SPECIAL EVENT: Abilities Expo, Long Beach, CA
Date: Friday, June 8, 2001
Time: All Day
June 8 - 10, 2001
Long Beach Convention Center
Long Beach, CA
Abilities Expo, the one show dedicated to educating and
improving the lives of people with disabilities, senior
citizens, their families & caregivers, as well as healthcare and
education professionals, allows you to discover new products and
services - from computers to athletic equipment and mobility
products to daily living aids - all conveniently displayed for
you to see, test and compare.
http://www.abilitiesexpo.com/scalifornia/index.asp

Thank you everyone for your kind and thoughtful replies - I am saving them in a folder for Mike when he returns! I was wondering if someone could explain to me how tPN works. I know there is one type of intravenous nutrition that can be provided in a tube which goes into ones abdomen and another that connects with the jugular vein in the neck. I just don't quite understand the difference. Does anyone use tPN at home and is it challenging to operate? I apologize if this is a repeat topic - I just would like to have a better understanding in case some time of intravenous nutrition will be needed here at home.

Mike is resting comfortably. They are giving him morphine. So far, no ill effects. He has had xrays and a CT scan today. He is also on IV fluids. I believe they will put a tube into his nose so that he can get fed and give his pancreas a rest. I will share more as I get more info. Thank you again for caring and your kind words. I think this loop has a unique bond I have never seen before.

Love, Lori Karns

Hello Debi,
I am sorry, I was under the impression that you were talking about
the Doc said the ERCP was no big deal. I am still not sure, but if
even if he did not say no big deal about the ERCP he was still wrong
saying it about the pancreatitis. It is a very big deal, alot of
other med. problems with pancreatitis also.
Sorry for the mix up, Alicia

Pam and Doug,

The NIH guidelines are not "proposed" they were put in place last year under Clinton and specifically ban use of fetal tissue for NIH research. The ONLY cells allowed to be used under these guidelines are the leftover in vitro blastocysts which as Doug said will be destroyed if not used. Using the pluripotent cells does keep them alive and may save lives or quality of life for brain disorder patients. If Bush bans the research, he will be changing the rules all by himself, Clinton had a committee draw up the rules and put them in place. The committee had clergy as well as doctors, scientists and laymen involved.

That survey jives with my experience also. I have been asked to join in panel discussions on the subject at several church groups in the area - mostly through contacts in our local church softball league. At every one, I have had comments that at least some people had changed their minds to support the research. So far I have talked or debated the issue at a Baptist Church Bible class; three different Presbyterian churches (two women's groups and a Bible class); one Episcopal Bible class; my own Lutheran Bible class and a multi-denominational church.

There are a lot of untruths being spread about this research leading to body "parts" for sale and mentioning arms, legs, etc. The number of different cells in an arm makes this concept nearly impossible AND it would take years to grow them IF they could figure out how to grow each of the hundreds of different types of cells needed for a limb AND learn how the mother's womb teachers them to grow into an ordered being. Stem cell researchers are not trying to grow new "Parts" - they are trying to grow specific repair cells to repair specific types of cells. At best at this point, they are hopeful that they could get the cells to grow all the cells needed for human blood. But I have never seen a mention of growing even a new finger, much less whole limbs.

The big gun is pulling out the study that shows that the in vitro blastocyst can not grow into a human without being placed in the womb (where it has never been). In fact, the only cells they have been able to get the pluripotent cells to grow into which has been duplicated is the dopamine producing neuron. I did read today about a study in Italy where they are complaining about growing so many glial cells, but they were trying to grow neurons.

Hopefully President Bush is learning the truth about the research and has the integrity to admit he was misinformed about the research. Today he saw what being petty about a single vote could cost him politically. Hopefully also he can learn to compromise, so we can get our country back on track. In the news stories about this I learned about even more moderate Republicans who support the stem cell research strongly. Hopefully too, the Democrats will be sensible with their choice of committee chairs and put moderates in rather than extreme liberals. The country as a whole prefers moderates at this time.

I wish we had a Ben Franklin at this time, anyone who could get members of many nationalities (including English, Irish and Germans) as well as members of the Church-of-England, Presbyterian, Baptist, Moravian, Friends and other churches to work together to start an academy (later became the University of Philadelphia) could be a great value in this day of no compromise. He also talked Quaker's into not voting against setting up a militia as war was against their religion, he pointed out to them that the militia was for the good of all Pennsylvania. While there is talk about Christain ethics being the foundation of the US Constitution it seems to me that my history lessons pointed more to compromise and tolerance as the authors of the Constitution. Tolerance used to be a Christ-like virtue. Now if you speak of tolerance someone will accuse you of being un-American or a liberal. Was Christ a liberal?????

Take care, Bill and Charlotte

In a message dated 2/6/01 4:47:28 PM Eastern Standard Time,
shirlf3542@... writes:

Where are you Carole? I am worried about you. Are you OK? Please let us
know what is going on with you. Is your cyst worse? I hope you are not
posting because you are busy or having fun with your family and not because
you are too sick to post. Love, Shirley

Hello Shirley,
I've been having another attack so I haven't been online at all this past
weekend. It started Thursday and just continued to get worse. I finally
called my GI doctor yesterday and left a message but he hasn't returned my
call yet. Of course, the last time I spoke to him on the phone, he said he
would get back in touch with me as soon as he received my CT Scan from the
hospital....said he wanted to make sure the Pseudocyst wasn't attached to
anything else. I didn't really understand why but that was about three weeks
before Christmas and I'm still waiting for that call, too!!!
Shirley, I read the post in which you said you are able to eat without pain
and I'm so happy for you...it's about time! Are you able to sleep at night
now? When do you go back to the doctor? Glad to have you back with us and
continue to take good care of yourself.
Hugs & Prayers
Carole

Dear Kathy,
Yes he's doing better and is home. Hope the peg will help Dave and you both
are in our thoughts and prayers. Thanks for the message.
Mary S.

Bill,

Replying to your test.

Jerry

Debi,
I can not believe anyone, let alone a Doc would tell you an ERCP was no big
deal. They are can cause another attack of pancreatitis, the scope has to
pass through your digestive system. They make you sign a release in case of
anything going wrong(puncture to any part specifically the stomach, which by
the way I have not heard of happening, etc.). From my previous procedures
including ERCP's I have never had anything bad happen, and no one I know has
had anything bad happen to them under the care of the physician, but the
point is there is a slight chance and that is enough to be considered a big
deal.
I hope everyone else agrees with me.
My husband doesnt understand what happens to me but he is sympothetic, my
family on the other hand feels pretty much the way you are explaining your
family does. They act as if I can not possibly be as sick as I am, and why
in the world do I have to go to the hospital for the pain, why can't I just
stay home. I dont know what to tell you to try and get your family to
understand, because I have been trying for 6 years since I have been
diagnosed, but I have had it all my life and even when I was young throwing
my guts up and dying of pain on the couch for days at a time I still had no
sympathy. I am just lucky because my husband's family is truly supportive.
His mother went to the ER with me one time for an attack and after that she
was completely conviced I was telling the truth.
I hope everything works out great for you, just keep trying.
Sincerely, Alicia

I just changed to Netscape 6.01 and have gotten no email from the list even though I sent two messages earlier today.
Bill

Alicia,
this puts a whole new light on most of my high school and college years.
I had a ton of episodes where I had huge problems with what the doctors diagnosed as severe constipation that included throwing up because, as they put it, the intestines just weren't moving so the food had no where to go but back up (this was after my first case of pancreatitis, but before any of my others). I also had a couple of episodes of severe stomach pain when I was 3 and 4 my mother is sure were attacks of pancreatitis (she thought they were appendisitis at the time, but tests for that came out normal).
Kimber

Shirley,
I sent you an email in reply about the glucosamine. Did you get that one?
Kimber

In a message dated 2/5/01 11:29:20 PM Eastern Standard Time,
Tweeter1001@... writes:

I am noticing a pattern with taking the Viokase with my meal and the gas
afterward. I was just wondering if you or anyone with any info on this can
help. My GI told me to take Phazyme but I just started today.

Hi Alicia,
I have noticed every time I have attacks, I have swelling and excessive gas
that feels like it's trapped and makes my pain worse. I'm not on enzymes so
I can't blame the gas on medication. I do take Pepcid daily and Phazyme and
Mylanta for the gas which helps but it still takes a long time for the gas to
move completely out. It usually happens right after a meal especially if I
eat something I know I shouldn't but has happened even on a low-fat
meal...hope this helps.
Hugs & Prayers
Carole

you can obtain stem cells from umbilical cords (cord stem cell), is this an issue for Bush as well as embryos? Can you obtain them from embryonic fluid? The embryos are being aborted anyway, correct? How are religious group s justifying it (just out of plain curiousity)? I used to work in bone marrow transplant research, but I never heard any ansers to these questions. Does anybody know?

- Waverley
This is being forwarded from the Parkinson's Listserv:

New Survey Finds Overwhelming Public Support for
Federal Funding of Stem Cell Research
Backing Comes from a Spectrum of Religious Affiliations
and Ethical Perspectives
WASHINGTON, May 23 /PRNewswire/ -- After hearing both sides
of the issue, public support for human embryonic stem cell research
is overwhelming -- 70 percent -- and includes surprisingly strong
backing from fundamentalist Christians and abortion opponents,
according to a national opinion survey released today.
The survey shows solid support for continued federal funding
of stem cell research, which scientists believe may lead to cures
for many deadly diseases, and indicates that President Bush and
members of Congress can reap significant public approval for
decisions that advance the federal commitment to the search for
life-saving medical cures.
"This survey shows beyond a doubt that the American people
have a strong sense of the promise of embryonic stem cell research
and that they want it to go forward," said Lawrence Soler, chairman
of the Coalition for the Advancement of Medical Research (CAMR).
The Coalition called on the Administration to release federal funds
for all types of stem cell research to the National Institutes of
Health,
under the NIH ethics guidelines now in place.
"These results confirm that many Americans feel that this research
holds enormous promise for saving lives, and that we should view it
from a personal perspective rather than a political one because it's
not a pro-life, pro-choice issue. I agree. Tens of millions of
Americans -- and my family and I are among them -- know the pain
and loss of cancer and other life-threatening illnesses. This
research
gives us great hope and it deserves our support," said Connie Mack,
former Republican Senator from Florida.
Survey participants were asked their initial opinion of stem cell
research that comes from fertilized eggs. They then were given
a series of arguments used by both supporters and opponents
of the research. Seventy-seven percent indicated initial support.
After hearing further arguments on both sides, the results showed
continued, strong overall support -- 70 percent. Participants
strongly supporting the research outnumbered those strongly
opposed by 3 to 1. Respondents strongly favored NIH funding
for stem cell research by 2.5 to 1.
"Not only do the American people support stem cell research,
but leading scientists, Nobel laureates, and several policymakers
from both sides of the aisle agree that the research is one of the
most promising avenues to curing debilitating diseases.
The Administration should allow federal funding of all types
of this research to go forward immediately," said Mary Tyler
Moore, International Chairman of the Juvenile Diabetes Research
Foundation (JDRF).
Ms. Moore has had juvenile diabetes for over 30 years.
The survey -- designed to extract more detail than in previous
polls about public attitudes toward the role of embryonic stem
cell research -- also showed surprisingly strong support among
participants who described themselves as Catholics, fundamentalist
Christians and abortion opponents.
"Stem cell research holds the promise of hope for 100 million
people living with incurable diseases from diabetes to heart
conditions to Alzheimer's to Parkinson's, ALS, MS, and spinal
cord injury. It will affect the entire American family," said
Christopher Reeve, Chairman of the Christopher Reeve Paralysis
Foundation, who was spinal cord injured in 1995.
"I believe this is why we find in this new survey such strong
support from people with such diverse religious and ethical beliefs."
Support for the research among Catholics outstripped opposition
by more than 3 to 1 (72 percent to 23 percent) and among
fundamentalist
Christians by almost 2.5 to 1 (63 percent to 26 percent). Both groups
also favored, by wide margins, support by President Bush and
members of Congress for the research.
Among participants describing themselves as pro-life, more than
half favored stem cell research (56 percent) and NIH funding
of the research (57 percent).
The survey of 1,010 adults was conducted May 10-13 by Caravan
OCR International for the Coalition, a group of 49 organizations
and universities involved in seeking cures to such life-threatening
illnesses as cancer, diabetes, Lou Gehrig's disease, Parkinson's
disease, spinal cord injuries and heart disease.
For a summary of the survey results, visit
http://www.stemcellfunding.org .
http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=104&STORY=/www/story/05-23-200\
1/0001500565&EDATE=
**********

This is being forwarded from the Parkinson's Listserv:

Beth,

It depends on how strong the person push the wheelchair is. On public buildings the slope is 12 to 1 (12 feet long for one foot of drop). It is hard to get that with a lot of homes, but 10 to 1 is getting pretty steep. Even at 10 to 1 you should think about putting some sort of nonslip surface on and anything steeper than 10-1 definitely needs a nonslip surface. Any questions write back and I will find more for you.

On general building techniques, look for books on deck building plans. Your local building permit office may have typical plans for a ramp. Any areas where you turn should be a minimum of 5' X 3'. I will look up some websites later and put them on a later message.

Take care, Bill and Charlotte

Hi Kelly,
I am beginning to agree with you. I don't know that
I'm going to stick with this doctor. I am going to
talk with him Monday. I have so many questions. The
problem is that I have to be referred to him by my
primary care physician, so right now, I can only talk
with him on the phone. I will have to have another
referral to actually see him... I'll let you know
what he says, or doesn't say. I feel like I know more
than him at this point.
Your right, I'm having a very hard time just convincing
my husband that this is serious. He just doesn't get it...
Thanks,
Debi

Pam;
I wish I would of ask this question also and had the answer a few
weeks ago. I'm so glad that you found this. One of the men from
church came and put on up a ramp few weeks ago. I know he did his
best to help, but the way it is at the front where you have to start
going up with the wheel chair, I don't think I will ever be able to
get Fred and the wheel chair started. Now maybe I can fine out how to
change the end so that it will be more of a slope.
Thanks
Vera

http://www.savvyhomeadvice.com/reference/handicap.htm
Handicap Accessibility
Accessible Housing, as defined by Uniform Federal Accessibility
Standards
must meet the following requirements:
(to see the complete text - http://www.access-board.gov/ufas/ufas.htm
)
(also see the Justice Department's ADA site at:
http://www.usdoj.gov/crt/ada/adahom1.htm )
Doorways - Shall have a minimum clear opening of 32"
Bathrooms - Shall have a 60" circular turning area.
Ramps-
The maximum slope of ramps shall be 1" of rise for each 12" of run.
The maximum rise for any run shall be 30".
The minimum inside clear width of a ramp will be 36".
Landings shall be provided at the top and bottom of each run.
The Landing will be at least as wide as the ramp, and shall
be minimum of 60" long.
Handrails shall be installed on both sides of ramps,
between 30 inches and 34 inches above ramp surface.
Handrails shall have a clear space between the rail and wall of 1-1/2".
Handrails shall be continuous through the length of the ramp, and
shall extend, parallel to the floor, at least 12" beyond the
top and bottom of ramp.
Ends of handrails shall be either rounded or returned smoothly
to the wall, floor or post.

Nowadays with the internet we have a library at our fingertips. You can
find out practically anything by searching for it on the world wide
web. There are many web addresses known as "Search Engines". By going
to these addresses using Netscape or Internet Explorer you simply type
in some words decribing what you are looking for.
This is the search engine I use most often:
http://www.google.com
Today I went to that web address in Netscape Navigator and typed in
"building wheelchair ramp" and it returned me several pages of
references.
Hugs,
Pam

That is about 45 + minutes from me...
Debi

In a message dated 2/6/01 5:24:31 PM Central Standard Time,
dvondane@... writes:

Hi all again - another question, does anyone find a correlation

i have gotten to the point where i can't really tell what sets it off
anymore. sometimes i can eat a little piece of steak, salad & veggies and
i'll be fine. i could eat some broth or soup and hurt or vice versa. i do
know that if i ate a lot of fat, not just protein that i would be sick. i
have never eaten much fat in my diet my whole life, anyway. i also have high
blood pressure (which is under control with meds). protein is harder to
digest so i try to watch how much i eat of that at one sitting also.
debbie (ark)

http://wvwv.essortment.com/howtobuildwhe_rjwa.htm
How to build a wheelchair ramp
Wheelchair ramps are constructed for wheelchairs, but they are also
ideal for strollers, too, and can add resale value to your home. The
Americans with Disabilities Act sets strict standards for ramps, so
make
sure that you install yours correctly. The slope, for example, must
not
be more than 1 inch of rise for every 12 inches of run. Ramps,
therefore, tend to be long. Youll need to build a ramp at least 20
feet
long to reach a deck 20 inches in height.
Construct the ramp with pressure treated lumber to prevent the wood
from rotting. Make sure you purchase the posts that are rated for
burial
in the ground. Before you start building, be sure to check your local
codes for requirements, you might need to apply for a building permit
in
your area.
Measure up from the ground to find how many inches the ramp must
rise. For every inch of rise, youll need a foot of run. A 20 inch
high
deck, for example, requires a 20 foot long ramp. To accommodate
turning at the top of the ramp, lay out a 5 foot square landing with
batterboards and masons lines. Level each line and apply the 3-4-5
triangle principle to square the corner. Slide the line along the
batterboard until the distance between two points 3 feet and 4 feet
from the corner is 5 feet.
Lay out the outside edges of the ramp with batterboards and masons
lines. Level the lines and square them by again applying the 3-4-5
triangle principle. Remove the sod from the site and excavate 2 to 3
inches of soil. Excavate an extra few inches deeper at the bottom of
the ramp so you can build as close to ground level as possible.
Lay out post locations on masons lines with masking tape. You need
posts at the corners of the landing and every 5 feet on center along
the length of the ramp. Transfer the taped marks to the ground with a
plumb bob and powdered chalk. Mark the position of the masons lines
on the batterboards and untie them. With a posthole digger, dig holes
for the posts at least 6 inches below the frost line, tapering them
from
12 inches at the top to 18 inches at the bottom. Retie the masons
lines
so they mark the outside faces of the posts.
Cut fiber tube forms 6 inches shorter than the depth of the holes.
Nail
2x4s to opposite sides of the forms and suspend the forms in the
holes
so they sit about 8 inches from the bottom. Install posts in the
holes,
plumb them with a level, and brace them in place.
Prepare pre-mixed concrete following the directions on the bag and
fill
the fiber tube forms. Work a scrap board gently up and down in the
concrete to eliminate air pockets. Level and smooth the concrete with
a
trowel. Let the concrete set for 48 hours, then remove the forms and
backfill. With a masons line and a pencil, outline the height of the
decking boards and the joists on each post. Mark lines on the bottom
post as close to the ground as possible to minimize the size of the
concrete pad youll need to build.
Lay down landscape fabric over the excavated site to prevent grass
growing up through the ramp. Cover the fabric
with 2 inches of gravel. Install 2x6 crossbeams across posts where
the
bottom of joists will be higher than 5 ½ inches above the ground.
Measure between the outside faces of the posts and cut the
crossbeams to this length. Bore holes for the 3/8 x 7 inch hex-head
bolts, then install the bolts with washers and tighten the nuts.
Lay out and install 2x6 joists for the landing. Cut 2x6 outer joists
to fit
along the sides of the ramp between posts. To mark the joists at the
top of the ramp for cutting, butt them against the header joist and
trace the angle onto them with a straightedge. Install double header
joists between posts at the ends of the outer joists with galvanized
10d
(3-inch) nails. Cut outer joists at the bottom of the ramp so they
extend a few inches past the posts. Nail a single header joist to the
ends of these outer joists. Reinforce the corners between the outer
joists and header joists with angle brackets.
Lay out inner joists on the header joists, spacing them no more than
16
inches apart on center. Nail one side of a joist hanger in place at
each
end marked point. Cut the inner joists to size, fit them into the
hangers,
and nail the other side of the hangers closed. Nail the hangers to
both
sides of the joists. Decking boards run across the joists. Measure
the
distance between the outside edges of the outer joists and cut (5)
4x6
boards to this length.
Attach the decking boards to the joists with galvanized 8d (2 ½ inch)
nails or No. 8 deck screws. Butt the boards together, since theyre
pressure treated, the boards will shrink as they dry to leave about
an
1/8 inch gap. Add pressure treated wood for the railing to the top of
your deck to complete the finished look. You can design your own
railing
that will give your ramp it's own appealing look.

I'm looking for information on building wheelchair ramps. Does anyone
know the proper incline for a wheelchair ramp? Where does someone find
this type of information?
Thanks!
Beth

In a message dated 2/6/01 4:22:25 PM Central Standard Time,
bonnie.hudick@... writes:

HI all - I wrote here a long time ago - and have recently experienced
pain again and wanted to ask if anyone else felt this as well: a
burning sensation/pain along my "bra-line"/between the shoulder
blades and sometime wraps around the front of my body. I get this
often after I eat - esp. if it was something fattening.

hi bonnie! wonderful name, by the way (my mother's name is bonnie). it
sounds like my pancreatitis pain. i don't know about the ibs - i know some
others can tell you.
sorry you are having problems again, regardless of what they are from.
debbie (ark)

I'm looking for anyone with MSA living in the area of Cashmere, Washington.
I have someone who would very much like to meet with others who are going
through the same type experiences.
She does not have a computer or internet access.
She is able to get up to Seattle occasionally & that would be another
option for her.
Please let me know if you are interested in meeting with Ann & I will give
you more information.
Thanx much,
Charmayne
charmayne@...

In a message dated 2/6/01 2:12:26 PM Central Standard Time,
dvondane@... writes:

I live in Colorado too!
Debi

hey debi and carmen - my sister lives in colorado. their mailing address is
englewood. is that near either of you? debbie (ark)

That's a good reason to check out the link Bill provided:
http://www.snopes2.com/horrors/parental/kidnap.htm
Which includes links to information about the 'Code Adam' and
to information put online by the FBI.
Thanks, Ann and Bill.
Doug in GreenBelt, MD

George,
I liked this one best.
Bill
George Relles wrote:
Some years ago, an American walking through the streets of London, was passing
by
Londons tallest building. As he stood there looking up, a British lad came up
beside him. After a while the American turned to the boy and said, Do you
realize son, that we have buildings like that in the States, only theyre three
times the size!
I'm not surprised, said the boy. Thats a lunatic asylum!

In a message dated 2/6/01 8:30:50 AM Central Standard Time,
SHckb@... writes:

I anticipate he will be in the hospital for about a week - not
really sure. I will forward on to him any notes from you all.
your cries and you are remembered with love - I know there must be a
special "pancreatitis" angel - a full time job!

so sorry lorrie that mike is in the hospital. be sure and tell him we will
all be praying for his quick recovery. i think that the angel that God sent
for mike - is you.
your new friend, debbie (ark)

Mary Ann,
A recliner chair is not usually covered by Medicare where the lift is. Your
doctor and chair supplier should have known to sort this out in advance. When I
got Charlotte's wheelchair - the chair was covered and medically necessary (for
Charlotte) things were covered. But things like removable wheels to aid my back
on stairs and a table tray were not covered and had to be "add ons" which I paid
for in advance.
It is best to work with a medical supply house that does business with Medicare
on a regular basis as they know how to write the orders and then get the doctor
to sign the order. The doctor's do not always know how to write the order
stating the medical need for the lift, and an occupational therapist is often
better at writing the statement of need. While there are differences between
states, I think that medical need is standard.
On the mattress - if you get it through Medicare, you rent it for about 13
months before it is yours. If it does not work, you call them and tell them to
come get it and give you another one. The same should have happened with the
recliner.
If your mother is out of money, she should move to Medicaid. There is also some
sort of program where there is a small sum of money from the state, but I don't
know the name at this time. You need to talk to the Agency on Aging to find out
what is available and how to get what is due her.
Take care, Bill and Charlotte

In a message dated 2/6/01 5:37:28 AM Central Standard Time,
sunflower6668@... writes:

Kelly,
I was only supposed to take one initially. I forgot what the dosage
was-I threw them all away IMMEDIATELY!! The doc who treated me in
the er said that this was the worst new med on the market today
because of side effects. But they were surprised that I had such a
strong reaction. I am an allergic body, however, so maybe that
sensitivity had something to do with it! Anyway, take care, you
lurker :-) I lurked for many months before I became involved here!
Be well,
Christine

ultram - oral tramadol hydrocholoride is used for the relief of moderate to
severe pain. it works on the central nervous system to relieve pain but is
not chemically related to opiates. this medicene may cause physical and
psychological dependence. it should be used for short periods of time with
caution under the supervision of your physician.
generic - tramadol hydrocholoride (oral) controlled substance - non narcotic,
analgesic. that is what i had found on the internet under drug descriptions.
it gave side effects as: dizziness, tiredness, nausea, constipation and
headache. withdrawl may occur if discontinued abrutly, tremors, anxiety,
sweating, insomnia may impair mental and physical abilities. also said not
to take more than 400 mg daily. is less likely to cause serious gastro side
effects & less likey for physical dependence than synthetic analgesics, is
not derived from natural sources and not chemically related to opiates.
relief similar to that of tylenol with codeine #3. low potential for abuse.
peak concentration reached about 2 hours after a single dose.
some times side effects from products are hard to discern - especially if you
might have the same effects from your illness. there are a lot of side
effects with penergan also that so many of us take for nausea and everyone is
different - -so you have to find what works for you. if i get changed to
something else - i'll look it up on the computer and ask all of you guys too,
just like always.
debbie (ark)

Bill
.........Your computer clock time zone is
set for..........
How do I reset my clock.... the time it shows on the screen is correct. I
realize my e-mail sending time shown is very off. I know how to check the
time and the calendar date.
Right now my screen says it's 7:45am...
Mary Ann-
From: Raymond Werre <b.werre@...

Bill
I didn't buy Patricia's ripple air mattress either. Here in Victoria,
we have an organisation called "Program of Aids for Disabled People"
(PADP) operated by the Victorian State Government. I suspect that
other States have a similar program and organisation. The program
provides appliances to enable people to continue living at home.
People with a permanent or long-term disability can apply to the PADP
for assistance in acquiring special equipment such as wheelchairs
(electric and manual), electric scooters, oxygen cylinders, hospital
beds, surgical shoes, home hoists, special underwear (for incontinent
people), and so on. The PADP will also consider upgrading bathrooms
to meet Australian standards for disabled people up to a maximum of
A$4,000. Wheelchair ramps can also be provided.
To be eligible for assistance from the PADP, one needs a written
referral or report from a doctor or HealthCare professional such as an
occupational therapist. In our case, we have used the occupational
therapist from the local city community healthcare centre.
Any equipment supplied by the PADP remains the property of the PADP
and must be returned to them when it is no longer needed. PADP will
repair and/or maintain items which have been issued under the program.
<<Hey John! Are wombats night creatures, you sent this about 12 AM
your time
<<according to my calculations. I think you are in the same time zone
as Anne
<<which is 14 hours ahead of EDT in the USA. Your computer clock time
zone is
<<set for GMT however as that is what prints out on the email. (-0000)
Anne's
<<(Gold Coast, Queensland) messages always show (+1000) in the header.
Bill - are you trying to tell me that you have time during the day to
send emails? Around about midnight, after I have settled Patricia
down for the night, is when I have the time to check on my emails.
You are quite right - that last email was around 12:00am our time, and
yes, we are in the same time zone as Queensland ( and I'm not going to
mention any Queensland jokes).
Sorry I haven't replied to your last email - I will when time permits.
Regards
John aka the wombat

In a message dated 2/5/01 10:16:44 PM Central Standard Time, bandscox@...
writes:

4) Many of you mentioned that I should not have dairy products. Has your
doctor told you this? No one has ever mentioned it to me....

staci - the problem i have with dairy products is the fat content. when i
use milk i use skim, no fat cheese etc; there can be a lot of fat in
cheese, ice cream etc;
debbie (ark)

Dear Bonnie,
Sorry! I left out an important period in that address I gave you. It
is:
http://www.ddc.musc.edu
Thank's,
Henry

Karen, Pat's address is
mombeekman@... and
phone # is 440-234-0007
I haven't rec'd message on next meeting, but I believe it is usually
2nd. Sunday of the month.
Bernice

Dear Bonnie,
Hi I'm Henry with the Pancreas group. Welcom eto this friendly group!
Sometimes I miss when new folks come on although I try to keep up with it
all when I'm feeling better. I've had Pancreatitis since 1992 and have had a
myriad of tests, procedures and surgeries. How long have you had Chronic
Pancreatitis? Regarding your question about large meals, and fatty meals,
those are two of the biggest contributors to pain in the pancreas. The
pancreas has to produce enzymes to help digest fats carbs, ect. so that
throws a big load on the pancreas, especially fat. I'm on a low fat diet to
try and avoid flairups. There is a good web site that you can check out with
lots of good helpful pancreas info. It it The Medical University of S.C.'s
Digestive Disease Center site. The address is: http://www.ddcmusc.edu
I hope that you will check this site out and that it will help you. Good
luck!
Your New Pancreas Pal,
Henry

Hi Becky,
I've been doing pretty good lately. Thanks for asking. I've had a few days
lately with bad pain but
it only lasted a little while. WHEW! I am still playing with my horses. :) I
felt good enough to
ride this past weekend and was lucky enough to have great weather for it. Can't
wait 'til spring!
Christine, that's bad about your reaction to ultram. I will definitely hold
them for emergency
purposes just in case I might have a bad reaction. I'll try to keep my regular
stuff (hydrocodone)
refilled so I won't have take them at all.
Shirley, it's great that you're feeling much better. I know the hospital stay
must have been rough!
Thanks everyone for letting me know what was up with Karyn's pc. Hopefully,
she'll be back soon. I
hope everyone is doing well.
Kelly
Hey Kelly,
Good to see you posting! I too have not been posting as
often.......too many things going on at once here.
Wanted to let you know Karyn's computer is on the fritz and she is
getting it fixed, but Tull has been her go between while she is gone.
She has also not been feeling too good.
How are you doing and what is going on with you
your horses?
I hope you are well.........Becky

All MSA , CBDG, etc. welcome
Special Announcements/presentations regarding:
1. Speech Therapist scheduled as Guest Speaker for 06/24/01
2. Physician update by Becky Danglade
3. "Shopping Solutions" by Teri Grass
4. Much more!
Next Meeting:
Date Sunday June 3, 2001
Time 2:00p.m. - 4:00 p.m.
Location: Dublin Library
75 N. High Street
Dublin Ohio 43017
614-645-2170
Please RSVP if possible by 05/29/01
Leaders Becky and Dave Danglade
(614) 879-6624
or
Bernice Bowers
(614)-833-2588
Kindness is difficult to give away, because it keeps coming back.

Hi - Have been noticing a lot of emails about cathing and traveling so
thought I'd add a tip. If getting out of the car and walking to a restroom
at a highway rest stop is out of the question due to weather or fatigue, try
draining the urine into an empty Pringles can. Then pop the lid on the can
and take it to the restroom to empty (looks a little better than carrying a
urinal, it will fit in a large purse or tote bag and the coating on the
inside of the can makes it waterproof). We used the Pringles can routine
when our boys were small and couldn't wait for a rest area -- was easy for
them to go in the car -- sorry girls, it's not quite so easy for us). Hope
this helps someone. Judy/Ned B.

Debi,
Your doctor has done you a great mis-service! It's hard enough trying to convey
to the people around
us how bad this disease is without having the doctor tell you/your family it's
"no big deal". If he
truly feels this way, boot him to the curb and find a doctor that understands
this disease. I can
guarantee you that if that doctor had had ONE day of feeling like we do when we
hurt, he wouldn't be
saying that this is no big deal.
Kelly
Message: 22
Date: Tue, 06 Feb 2001 23:09:07 -0000
From: dvondane@...
Subject: Re: Hello, I'm a newbie
Hi Shirley,
I am very happy to hear that you are much better. I'm
just sorry you had to suffer for so long...
As I said, I have just started. It started the beginning
on Nov 2000 with a sharp stabbing pain when I ate. I had
test after test, and they couldn't find anything. I was
beginning to think I was crazy... Then, a few weeks ago
I had the ERCP which the DR said I had "chronic
pancreatitis/ pancreatic divisum", with no explanation other
than that. I only know what I have read on the internet.
The dr told me to eat no fat for 4 days and call him. So
I did, and it didn't matter what I ate, it all hurt. So,
last Monday he put me on Viokase, and said to call him in
2 weeks. This coming Monday will be 2 weeks. I have already
increased the amount of time it hurts, and it hurts all the
way to my back! Nothing is comfortable right now.
The dr told my father (who took me to the ERCP), that it
was no big deal, and my father told my husband. I am having
trouble convincing them that it is a big deal. That I won't
get much better, and that my pancreas is deteriorating. So,
I decided to join this group and get some support.
Thank you for all your help, and keep up the good days!
I envey you!!!
Debi

Thanks everyone,
There was a lot of different suggestions on pillows, and mattresses. The
link you sent John, was an eye opener for me...I hadn't thought of an air
controlled mattress. The lambs wool under the shoulder, another good idea.
Raymond, as far as Medicare paying for it. That might happen, as the
expression goes...When Hell Freezes Over, especially in Ottertail county in
Minnesota. Mother bought a recliner chair with remote control lift, to help
her get out of it, way back in July of 2000. Doctor prescribed. She has yet
to receive her reimbursement of half the cost. They turned it down 5 time,
we sent in an appeal 2 months ago. One of her doctors suggested she move to
Fargo,ND because medicare pays for almost everything there. This subject
ignites emotions and words that are not nice. I can feel my frustration
increasing, so i'd better change the subject.
I want to get Mother a mattress that will work for her but how do I know
unless she can try it out for awhile. Once it is used, and if it doesn't
work then what do you do with it? I made her several different style foam
pillows, by cutting out the shape she said would work. Well they didn't work
and now I have those pillows here at home with me...
My mother is out of money, I don't have any, and my husband....well it's
like pulling teeth. I don't have the luxury of buying something and donating
it to the needy if it doesn't work for her.
Am I pissing and moaning again? God, it isn't even that time of the month.
It is getting late, around 12pm...so maybe it's that I'm getting tired...Ha.
Besides that the weather might be to blame, very cold, windy and wet. It
rained yesterday and all of today, tomorrow looks to be the same. I was out
in the wet wind, cutting down canadian thistles. I heard that if you cut
then down when it is raining or going to rain, the root will rot. I'm not
stretching it one bit when I say I cut down at least 1000. I have a blister
on my finger, a very sore back and my hips hurt from binding over. There I
go again. Anybody got a violin? Ok, one more moan for the road. It all
started yesterday, Pete said do you want to go to that Oriental place to eat
for you B-day? Na I said I'd rather have a steak on the grill. I bought a
couple of real nice steaks and wouldn't you know it,,,it was raining,,,and
then I over cooked my steak, I mean really over cooked it!!!!! NOW START THE
VIOLIN MUSIC. I WANT TO HEAR VIOLIN MUSIC!!!!!!
Thanks for all the suggestions........
Mary Ann-

Ann:
Couldn't help but laugh when I read your note. Boy ! I bet no one
pull's the wood over your eyes.
Really Fred's mother is nice and I know she loves him, just doesn't
want to believe that he can be ill.
Thanks so much for caring about me. I like you THIS much also.
Hugs
Vera

Hi Liz, Dave has had the pneumonia vac. Thanks for your help.

Kathy

Pam:
That is great that the 500th member fundraiser has pulled in that
much. Thank you for all your had work and effort.
Hugs Vera

Hi Bonnie,
I am new to this (recently diagnosed), but with me,
it doesn't matter what I eat, or how much. Eating
hurts, and I have incredible nausea. I am taking
Viokase and still have pain and nausea. My pain is
in the upper abdomen and chest, that has now radiated
to the back. I also have IBS, but that pain is in
the lower left pelvic area.
Take care,
Debi

Sorry to post this to the list, but I have lost Pat Beekman's email address when my computer went down. Hopefully she will read this and let me know about the next Northern Ohio MSA/PK meeting.

Pat,

Sorry, but I did not get your message about Dr. Hickey until after the date as my computer was down.

Mom and dad were afraid, since it was Mother's Day, that the meeting was incorrectly listed, and since I couldn't get your message, they decided not to make the trip up.

(They live in Massillon, Ohio)

Can you tell me who the speaker will be for next month?

It's too bad this last meeting was MothersDay for you probably didn't have the turn out you had wanted.

Karen

Hi all again - another question, does anyone find a correlation
between attacks and either a large quantity of food eaten and/or
fattening foods?
Regards,
Bonnie

Hello,
I have not been able to get a message to shydrager-unsubscribe. Can you
please remove me from the email list at this time. Thank you, and i wish you
all the best. jan

hello everyone...... i am brand new to all of this but have been rec'vg and reading all of your emails... you have no idea how much you have helped!! My name is Bradene and I live in Butler, Pennsylvania. My mother has Parkinson's (going on 16 years since first diagnosed) and I have a dear friend (Fred) who was originally diagnosed with PD , turns out he has ShyDrager. Fred lives at home and is cared for by his wife,(they have no children nor family members to help) Fred has been totally bed ridden for 4 years, he cannot move, he cannot speak, is fed through a feeding tube , and is on a ventilator.

Absolutely heart-breaking. He has not been seen by a physician in 4 years , i have begged movement disorder specialists (Neurologists) in our area to see him but they claim there is nothing they can do. UNBELIEVABLE!!

The only meds he takes for movement is Sinemet 25/100 (8per day). His BP is normal, of course he is not moving when it is taken. Mr. Summers and Dr. Chalimpsky have been a tremendous help but i would also love to know what type of meds you have seen aid with mobility. It would be so wonderful to see him have some type of movement restored.

Most of the dr's i have talked with cannot believe he has lived like this for so long, makes me believe that the Lord has guarded and protected his life for something wonderful. A MIRACLE maybe????

One more thing,,,, a new type of surgery is in review by the FDA "Bilateral Deep Brain Stimulation" once approved it will be used to reverse the effects of PD-- patients are only

candidates if they no longer respond to the PD meds. My mother is a candidate, we are to see a surgeon on June 5. I will ask why this surgery is not available to Shy Drager patients-- if nothing else it may restore mobility. Does anyone else know anything about the availability for Shy Drager patients?? If you can check out the Pittsburgh Post Gazette on the Internet, article from 1998-- amazing how the surgery changed the life a gentleman from Monroeville, Pa. If you cannot find and are interested i will email the article to you.

So sorry to make this so long, i promise in the future i will keep it much shorter.

Thank you for your help... as i read your emails concerning your loved ones, i pray for their healing: "with God, ALL things are possible"

HI all - I wrote here a long time ago - and have recently experienced
pain again and wanted to ask if anyone else felt this as well: a
burning sensation/pain along my "bra-line"/between the shoulder
blades and sometime wraps around the front of my body. I get this
often after I eat - esp. if it was something fattening.
This is the same pain I felt last year when I had been put back in
with pancreatitis (I had my gallbladder removed 2 years ago as well -
that's what started this whole thing). One doctor did an endoscopic
ultrasound and said I have chronic pancreatitis and 2 others said I
didn't - frustrating - I did have 2 or 3 (can't remember anymore)
ERCP's as well as many endoscopies and even colonoscopies. I have
IBS - but I don't remember IBS causing a burning pain so high up in
my stomach and back.
Just wondering what symptoms others are getting with their
pancreatitis?
Regards, Bonnie in Connecticut

Ann,
It is not hard to see how you feel about this country. This is a great
lesson that my family will share at tomorrows dinner table.
I bet you are also, like me and many veterans, who can hardly hold back the
tears of pride when the national anthem is played!
Thank you very much for this gift. The nation is still strong!
God Bless you and these United States,
Jim Stark

In a message dated 2/6/01 6:37:35 AM Eastern Standard Time,
sunflower6668@... writes:

I too am glad to see Shirley posting again! I have missed her here!

Thank you dear Christine. I am glad to be back. Love, Shirley

Where are you Carole? I am worried about you. Are you OK? Please let us
know what is going on with you. Is your cyst worse? I hope you are not
posting because you are busy or having fun with your family and not because
you are too sick to post. Love, Shirley

In a message dated 2/5/01 11:34:37 PM Eastern Standard Time,
thrasher@... writes:

. Shirley,
hope you are doing well! Same goes to eveyone else here - the big
posters and the lurkers like me. :) What's up with Karyn, our
fearless leader? I don't see her post much anymore. Is she ok?
Be well, all. :)
Kelly

Hi Kelly, yes I am back and doing well. Thanks for asking. Karyn's PC is in
the shop. Tull has been answering for her. I wish the best for you. Your
friend, Shirley

Hi all,
Some professional answers to questions asked on the list:
http://my.webmd.com/content/asset/chat_transcript.527422
Good description of Sinemet and glossary of PD terms
http://my.webmd.com/content/article/3147.159
PD operations - descriptions; good and bad effects; etc. Info on
embryonic tissue transplant is old and outdated as it refers to fetal
tissue or pig cell transplant and not stem cell transplant. There is
good info on regions of the brain affected and how the cells die.
http://my.webmd.com/content/article/3072.267
All in all, they are worth reading.
Take care, Bill and Charlotte

Dear Donna and Cameron,
I'm so pleased to hear in your reply such a positive, "can do" spirit! A positive attiude does carry a long way in dealing with a chronic illness. Cameron, I can relate to your feeling an emotional low after getting out of the hospital. My girlfriend also has chronic pancreatitis and we both are subject to have an emotional drop down AFTER leaving the hospital, we've often been puzzled as to why this occurs after getting better and going home, perhaps the after affect of everything that happens to you when you are feeling sick catching up with you. I'm glad you have a way of dealing with your understandable sad feelings. Good for you! Donna, have you had a chance to check out the MUSC web site yet? I believe it is a very informative site with lots of good basic information on pancreatitis and its various treatments. I'm so glad that you found inspiration from my medical history. I do believe that there are a lot of good treatments that exist out there and knowledge is
power. Cameron is so advanced and smart for his age that he may glean a lot from reading these for himself online! I know you are so pleased and proud of Cameron and his being an exceptionally gifted child and you have every right to be. I can identify with your feelings for Cameron as the focal point of you and your husband's lives. My father is a retired OBGYN who specialized in reproductive endrocronolgy, and my folks couldn't conceive a child either. My mother went through many miscarriages back in the 1950s, so they finnally adopted me in 1962 - thirty years before you had Cameron!
You all remain in my thoughts and prayers for a brighter future and some effective treatments for Cameron! He sounds like a delightful, charming little boy with a very bright future ahead! God Bless you all!
Henry Williamson

In a message dated 2/5/01 7:36:28 PM Eastern Standard Time, lizbear68@...
writes:

Dear Christine,
I'll never be sorry I asked!!! I guess if you have to look at the
bright side, at least someone is looking into what's going on with you. It
seems to me that if you have a problem with your duct then it would make
sense that your liver enzymes are elevated. Of course, having a liver
profile
done will really clear things up. Anyway, I hope they can HELP you! You are
right not to get your hopes up. If I've learned one thing through all of
this, it is definitely not to get your hopes up.
I'm glad you get a break from the IV's for 12 hours. I never really
stopped to think how inconvenient that would be to be hooked up 24/7. I
guess
I just pictured it running at night to begin with.
I am doing OK. I decided to start taking my Viokase again. I just
started today so we will see. I had stopped taking it back in April when I
was having the nonstop nausea and could barely eat much less take 8 pills
with every meal. I just want to see if it has any effect on the pain. My
problem will be when I run out of them. I don't know if my regular MD will
order them or not. I guess I will cross that bridge when I get there.
Take care of yourself and let me know how things go...
Elizabeth

Dear Christine, I hope you can find the reason your liver enzymes are
elevated and that will be taken care of soon. Do you have pancreas divisim?
I like you had to carry that heavy bag around all the time for a long time
then they let me have it during the night only. What a relief. Please feel
better soon. Shirley
Dear Elizabeth, I would think that you would feel better on the enzymes. I
have never had any problems getting doctors to give me a prescription or a
refill for viokase since it is harmless. I don't think you will have any
problems getting them. Good luck, Shirley

Bill,
This may be a hoax, but many children do disappear each day in this
country.
It is better to be prepared instead of SORRY, so if parents and
grandparents of little ones are more aware of the dangers out in the
public, then maybe the little ones will be safe.
Ann from Soddy,TN

I found this quite interesting. Hope all of you will also.
Take out a one dollar bill and look at it. The one dollar bill you're
looking
at first came off the presses in 1957 in its present design.
This so-called paper money is in fact a cotton and linen blend, with red
and
blue minute silk fibers running through it. It is actually material.
We've
all washed it without it falling apart. A special blend of ink is used,
the
contents we will never know. It is overprinted with symbols and then it
is
starched to make it water resistant and pressed to give it that nice
crisp
look.
If you look on the front of the bill, you will see the United States
Treasury
Seal. On the top you will see the scales for the balance, i.e. a balanced
budget.
In the center you have a carpenter's T-square, a tool used for an even
cut.
Underneath is the Key to the United States Treasury.
That's all pretty easy to figure out, but what is on the back of that
dollar
bill is something we should all know. If you turn the bill over, you will
see
two circles.
Both circles, together, comprise the Great Seal of the United States.
The First Continental Congress requested that Benjamin Franklin and a
group
of men come up with a Seal. It took them four years to accomplish this
task
and another two years to get it approved.
If you look at the left hand circle, you will see a Pyramid.
Notice the face is lighted and the western side is dark. This country was
just beginning. We had not begun to explore the West or decided what we
could
do for Western Civilization.
The Pyramid is un-capped, again signifying that we were not even close to
being finished.
Inside the capstone you have the all-seeing eye, and ancient symbol for
divinity. It was Franklin's belief that one man couldn't do it alone, but
a
group of men, with the help of God, could do ! anything.
"IN GOD WE TRUST" is on this currency. The Latin above the pyramid,
ANNUIT
COEPTIS, means "God has favored our undertaking. "The Latin below the
pyramid, NOVUS ORDO SECLORUM, means "a new order has begun." At the base
of
the pyramid is the Roman Numeral for 1776.
If you look at the right-hand circle, and check it carefully, you will
learn
that it is on every National Cemetery in the United States.
It is also on the Parade of Flags Walkway at the Bushnell, Florida
National
Cemetery and is the centerpiece of most hero's monuments.
Slightly modified, it is the seal of the President of the United States
and
it is always visible whenever he speaks, yet no one knows what the
symbols
mean.
The Bald Eagle was selected as a symbol for victory for two reasons:
first, he is not afraid of a storm; he is strong and he is smart enough
to
soar above it.
Secondly, he wears no material crown. We had just broken from the King of
England.
Also, notice the shield is unsupported. his country can now stand on its
own.
At the top of that shield you have a white bar signifying congress, a
unifying factor. We were coming together as one nation.
In the Eagle's beak you will read, "E PLURIBUS UNUM", meaning "one nation
from many people."
Above the Eagle you have thirteen stars representing the thirteen
original
colonies, and any clouds of misunderstanding rolling away. Again, we were
coming together as one.
Notice what the Eagle holds in his talons. He holds an olive branch and
arrows. This country wants peace, but we will never be afraid to fight to
preserve peace. The Eagle always wants to face the olive branch, but in
time
of war, his gaze turns toward the arrows.
They say that the number 13 is an unlucky number. This is almost a
worldwide
belief.
You will usually never see a room numbered 13,
! or any hotels or motels with a 13th floor.
But, think about this:
13 original colonies,
13 stripes on our flag,
13 steps on the Pyramid,
13 letters in the Latin above,
13 letters in "E Pluribus Unum",
13 stars above the Eagle,
13 plumes of feathers on each span of the Eagle's wing,
13 bars on that shield,
13 leaves on the olive branch,
13 fruits, and if you look closely,
13 arrows.
And for minorities: the 13th Amendment.
Your children don't know this and their history teachers don't know this.
Too many veterans have given up too much to ever let the meaning fade.
Many
veterans remember coming home to an America that didn't care. Too many
veterans never came home at all. Tell everyone what is on the back of the
one
dollar bill and what it stands for, because nobody else will.

In a message dated 2/5/01 7:17:54 PM Eastern Standard Time,
bluesuede3@... writes:
Tammy from IL

Hi Tammy, my husband used to act the same way as your husband. It always
made me feel terrible. I asked him why he was acting the way he was and he
told me that he was depressed about me. I also feel that he got tired of
being around a sick person for so many years. I know it is hard on the
family but when your mate acts distant it is very hard on the person who is
sick. I felt alone and guilty for being sick. Dear Tammy just do the best
you can and try not to let his feelings worry you. You have enough to be
concerned about with your illness let alone someone else's moods. Good luck
to you. Your Friend, Shirley

I live in Colorado too!
Debi

Well I see that the wicked witch form the west is at it again.
I guess the best thing to do is just try and ignore her, and be congenial
when she visits.
Don't elaborate of Fred's illness in her presence.
Ann from Soddy, TN

Pam,Bill & Cindy:
Just wondering how is the 500th member fundraiser doing?
Always
Vera

Other stuff, I am trying to keep up with the group. I've gotten way
behind and hardly ever post so some of the posters that have joined in
the last months probably don't know me but, hi!, anyway. LOL! I was
very happy to see Shirley posting again after her surgery. Shirley,
hope you are doing well! Same goes to eveyone else here - the big
posters and the lurkers like me. :) What's up with Karyn, our
fearless leader? I don't see her post much anymore. Is she ok?

Be well, all. :)

Kelly

Hey Kelly,

Good to see you posting! I too have not been posting as often.......too many things going on at once here.
Wanted to let you know Karyn's computer is on the fritz and she is getting it fixed, but Tull has been her go between while she is gone. She has also not been feeling too good.
How are you doing and what is going on with you
I hope you are well.........Becky

Hi Kathy:
I know it's hard to make Fred's mother understand about the MSA.
Really she just doesn't want Fred to be ill and will never believe he
is, even with another doctor opinion.It's been 4 years now since the
DX and his mother has never been to a doctor appointment or even read
the paper's I have on it. I talked to our Pastor's Wife Sunday , she
is a MD and has seen the changes in Fred over the last 4 years. I
tolded her that Fred's mother wanted a second opinion about his
illness and wanted to know what she would do. She said that she
didn't think that Fred's mother would ever be happy unless the doctor
tolded her that Fred didn't have anything wrong with him, and she
said we know that isn't so. She said a second opinion with a
different doctor may find some different meds, but not the DX. I'm
sorry she is in denial, and I'm sure I'm on her list of not her
favorite daughter in law, but I see Fred everyday and watch the
changes. She see's him for 10 minutes every few months. She really
doesn't see much in that short of time. Both Fred and I feel his
doctor is on top of the matter and is treating Fred the best way he
can.
Always Vera

Some states work harder than others so they get to celebrate a day off first:-) Or it could just be the time difference between states....we're a BIG country ya know! Besides, it keeps people like you Bill on your toes to keep reminding us of our countries "little" differences.......as for standing on our heads HA!!!!!!! we just won't go for that discussion today, I've got a dizzy spell coming on :-)

Take Care

Fordy's Michelle in Oz

Must be a new record two hoaxes in 43 minutes.
See this hoax at::
http://www.snopes2.com/horrors/parental/kidnap.htm
While the intent may be good - the story is a lie and distorts the warning.
It is worth reading the above site which includes this paragraph:
Although this warning is undeniably good advice, the legend that presents it
exaggerates both the prevalence and manner of kidnappings. A child is far
more likely to be snatched by a family member or ex-spouse in a custodial
dispute than he is to be the victim of a random abduction. And rarely will
kidnappers go through such elaborate procedures as the ones hinted at here --
luring a child outside where he can be quickly bundled into an automobile is
far more effective and less risky than trying to smuggle one out the exit of
a crowded public space. (The example presented above doesn't even make much
practical sense. Why waste precious getaway time shaving a child's head --
with a razor, yet -- when you already have a wig to cover its natural hair?)
Take care, Bill andCcharlotte

\\ Miami, Fl
Hi Jeff,
I am sorry about your mothers news. I have never had a cyst, so I
cannot help much, but there is another site that might be able to
help. The URL is: gastroenterology.medscape.net Someone in here
recommended it and I have checked it out and have found it to be quite
interesting and informative. Hope this helps you. Will be praying for
your mother.
Take Care,
Tammy from IL

I don't know if it's better, but another way is:
Reply.
But then before you compose your own message, delete everything
in the window that you don't want in your reply. That may be
the entire digest.
BUT, if your email software always attaches the original to your
reply then you will need to change that default setting, or remember
to 'detach' the attachment or something instead. I don't know how
to do that, all the emailers I use are set up to read the old text
into the window where I write.
Each email software will be different.
It is a big help when you include a little of the original
text in your message. But it's a big problem when you include
all of it especially an entire digest.
Doug in Greenbelt, MD

EVERYONE WHO KNOWS PARENTS!!!!!

Hi Lorrie,
Thank you for your encouraging words. Today is a new day! I guess it
is true...."Just take one day at a time". We all have to have time to
adjust to this. Your husband is very lucky to have someone like you in
his life...I am sorry that he has this disease and I hope he continues
to improve today. My prayers are with you all.
Hope All Is Having A Better Day!!!!
Tammy from IL

Kelly,
I was only supposed to take one initially. I forgot what the dosage
was-I threw them all away IMMEDIATELY!! The doc who treated me in
the er said that this was the worst new med on the market today
because of side effects. But they were surprised that I had such a
strong reaction. I am an allergic body, however, so maybe that
sensitivity had something to do with it! Anyway, take care, you
lurker :-) I lurked for many months before I became involved here!
Be well,
Christine
I too am glad to see Shirley posting again! I have missed her here!

Hi Vera, I am so glad you had a good time on your trip. When we went to Tennessee in Feb., I went into the bathrooms with Dave, I was so surprised how helpful and understanding the men were, they would watch the door for me and not let anyone in until we were out.

I am so sorry your mother in law gives you such a hard time. Has she ever went on a doctors visit with you and Fred? Maybe she needs to go and let the doctor talk with her about MSA. Hope it gets better for you.

take care, Kathy..... tell Fred we said hello

Hi Mike and Lori,
Lori, you must be that pancreatic angel for Mike. I am so thankful
that you are there for him.
I know it's hard to deal with, but you have found the right
attitude. Go with the flow, there's nothing you can do to change it
anyway, and be there for Mike. You are awesome!
I hope they can get Mike stabilized and home very soon. I am also
currently on tpn, have been since October. So that may well help his
pancreas to rest. I am glad he has a team of supportive and caring
docs. That is not always the case!
Take care of yourself, Lori. We need angels like you! And of
course, take care of Mike too. We need you two!
Be well,
Christine

I am so glad to hear about your dad improving. Strangely, someone on the
list mentioned that when her husband received oxygen in the hospital, his
head went up. Is it possible the machine at night is allowing greater oxygen
intake? Just a thought. Anyway, any improvement is wonderful. Hope it keeps
up. Debbie
-

Hello Donna,
My name is Alicia and I have been suffering from pancreatitis since
childhood, but was not diagnosed until I was 18 years old. It is wonderful
that your son was diagnosed and you know the culpret. I had pains and
vomiting for years and I was told things like I was constipated and I had a
juvenile nervous problem. There are alot of people who can show support in
this group and everyone has info about their own fights with this disease.
Let me rephrase myself. It is not wonderful that your son was diagnosed with
pancreatitis, but it is nice to know the reason for the nause and pain. I
had to go through the symptoms at home for about 12 years. The Docs did not
think my pain and nausea was severe enough to be anything other than the
things I said above.
I hope you can find help for your son. The best thing you can do is find a
good GI doc with knowledge of pancreatitis. Not all GI's know alot about
pancreatitis, they have general knowledge of digestive disorders, but not
specifically pancreatitis. Look into the GI's in your area and find one with
accreditation with pancreatitis.
Sincerely, Alicia

Beware of emails that tell you to pass them on.
This email has been floating aroung the internet for years and never was a bill
intending what it says.
Listed below are the titles of Bills introduced in both the House and Senate
since 1997 and numbered 602. There is NOTHING about the internet. All the Hoax
websites warn about how much internet memory and bandwidth these hoaxes take up
so PLEASE check junk emails like this before passing them on - they DO cost you
money in higher ISP charges.
Take care, Bill and Charlotte
Bill 602 in the 107th Congress:
H.R.602
Genetic Nondiscrimination in Health Insurance and Employment Act (Introduced in
the House)
S.602
Common Sense Federal Election Reform Act of 2001 (Introduced in the
Senate)

Hi Debbie!
I haven't "talked" to you in a while. :-)
You know, it's been 2.5 months since my father's
injections. As I mentioned before, we saw immediate
improvement, though it was not great improvement. His
head was still down, but just not quite so far.
Supposedly, the benefits of Botox usually peak at one
month, stabalize and then slowly taper off. Oddly, in
the last two weeks, (beginning a full 2 months after
the injections) my father's neck has improved so much
that it's hard to believe. In fact, I just saw him
this weekend and he looks like he did when we thought
he just had PD...his back and shoulders are stooped,
but the head is up. He looks almost "normal". He's
even getting around better, not "shuffling" so much
when he walks. I talked with him a few minutes ago and
he said that he doesn't understand what's going on
because today his head is completely up, even when
he's up walking around. We are trying to figure out
what he's doing differently. The only recent changes
he has made are the use of the breathing machine at
night, he started taking Zoloft again and he has also
increased his intake of vitamins (with anti-oxidants)
and salt tablets. Oh, and he started the Neurotin for
the burning in his legs, but I don't think that has
much to do with it. I'm anxious to go back to Houston
and talk with Dr. Jankovic to see if his recent
radical improvement could be a delayed reaction to the
Botox or something else. It's really a guessing game,
isn't it?
Melanie

Thanks, Bill. I'll check into that.
Melanie

In a message dated 2/5/01 11:10:05 PM Eastern Standard Time,
hominid2@... writes:

pancreat.zip (12392 bytes) DL Time (28800 bps): < 1 minute

Hi Kimber, I downloaded this and it was an e-mail from Shana. Did you mean
to send me an e-mail? I am confused. Help!!! lol Shirley

IMPORTANT NOTICE!

THE 2001 SDS/MSA

SUPPORT GROUP MEETING

FOR

PATIENTS, CAREGIVERS

&

FAMILY MEMBERS

WILL BE HELD IN BOSTON, MASS.

ON

FRIDAY, SEPT. 14th - SUNDAY SEPT.16th

This meeting will be hosted by

Dr. Roy Freeman

Dpt Neutology, Harvard Medical School
Beth Israel-Deaconess Medical Center