I can see !!! I can read !! I am delighted to not have to go to the main
site in order to find your pearls of wisdom ...
thank you for going back to 4.7 ..... I still haven't updated to 6 .....
cheers
sheila
Too often we underestimate the power of a touch, a smile, a kind word, a
listening ear .... all of which have the potential to turn a life
around. --- Leo Buscaglia
Perry,
Yes, on the shydrager groups page there is a contact us form which I filled out
some time ago and have never received an answer. The image was a small cartoon
Let's see, last winter at my feeders I had:
Blue Jays
Black capped Chickadees
Juncos
Evening Grosbeaks
Purple Finches
Goldfinches
Pine Siskins
Mourning Doves
Crows
Starlings
White throated sparrows
Fox sparrows
Song sparrows
Red Breasted Nuthatches
Hairy Woodpeckers
Downy Woodpeckers
I put out sunflower seed and suet and a bit of mixed seed for the finches.
The woodpeckers, chickadees, and nuthatches are all wild about suet. They
are fun to watch in the winter. Here is a site on back yard birds of winter
in Nova Scotia
http://museum.gov.ns.ca/mnh/nature/winbirds/
I also see lots of bald eagles in the winter, not by my house, but we often
take drives to an area of the Nova Scotia called the Annapolis Valley..
famous for their apples. http://www.valleyweb.com/ There are lots of
poultry farmers in that area and years ago they started putting out food for
bald eagles. The eagles congregate there now every winter and are a major
tourist attraction.
http://www.outdoorns.com/flying.htm
http://museum.gov.ns.ca/mnh/nature/nsbirds/feat02.htm
Hugs,
Pam
Thanks.
Bill,
I agree whole heartedly with your assessment. I hold almost the same
convictions.
I am Catholic, and there are a lot of things I don't know about how the powers
that be come to some of these decisions.
I also do not condone the death penalty or abortions.
I don't think we have the right to take a life until We are able to create
life. But if you look in a high school biology book at the definition of
"life", you will not find blastocyst.
Also one argument you missed is the Catholic holding, in that, if a doctor
is delivering a baby and he has to make a choice to save the baby or the
mother, the Catholic church always holds that the doctor must save the baby.
Catch 22 for the doctor.
The reason I send out the information I find, is to provide the information
and let the rest of this family decide for them selves.
Personally, I think HGH is going to turn out to be the first effective
treatment for the MSA syndromes.
God Bless,
Jim Stark
I'm sorry Pam I never did answer your question about what kind of
birds I have around here. There are a few hummingbirds, alot of crows
and sparrows, then there is a small yellow and grey bird I think
maybe finch, but not sure. We also have barn owls that come out at
night. The birdhouse are mainly for looks, but one bird did use one
for nesting. Most of the birds are in the Pine trees that are on the
hill part of the yard. Oh! did have a blue bird last year, but
haven't seen it this year. Then we've had white cranes for the last
few years. They seem to like the park that is close by. We had 4 last
year, but I've only seen the one this year. Do you get alot of
different bird in Canada?
Barb send me a site about birds, so I'm going to check it out and see
what it has.
Take Care
Vera
Jim,
That demonstrates the need for ALL forms of stem cell research. Blood
and muscle cells have been grown before from bone marrow stem cells even
as early as 1999. Nerve cells such as neurons have been grown also from
bone marrow stem cells in 2000. BUT dopamine producing neurons and
glial cells (true brain cells) have ONLY been grown from pluripotent
stem cells.
I personally do not care if they execute McVey on Monday, but they will
then "kill" over 400,000 brain cells (for the good of society) plus
millions of other human cells. There are only about 10 million cells in
the 100,000 in vitro blastocysts which will be destroyed if they are not
used for transfusion into humans to save their lives. Yes the cells
themselves will be cloned (or grown) into millions or even trillions of
brain cells. BUT the definition of a stem cell (even an adult stem
cell) is that it CAN divide and grow. Therefore the tripe about cloning
is fiction and NOT a valid argument at all, just pure politics or as
Harry Truman used to call it "BS". Bess did finally get him to call it
manure :o)
The Roman Catholic Church also calls executions wrong - where are they
now?? For that matter where was the Roman Catholic Church during World
War II when Jews were being executed? Some priests were helping Jews,
against the official orders of the Church. Where was the Pope when
Dietrich Bonhoeffer was executed for saying the Nazi's were wrong.
Millions of Jews were executed for being Jews, now we have 100,000
blastocysts that are scheduled to be destroyed if not used for curing
pain and suffering, and it is wrong to use them? When do we outlaw
human cell transplants like blood?
If we take the Bible literally - it says "Thou shalt not kill" period.
It does not even specify humans or animals. That is the assumption of
humans. There are religions which feel killing even animals is wrong.
Here (locally) a 38 year old woman taking a prescription drug, lost
control of her giant wheel SUV and killed a 15 year old girl. She spent
about 36 hours in jail until she saw a judge, then was let out on $5000
bail (cost about $500). She was later found not guilty of DUI and even
failure to maintain control of the car was dropped. She is free. The
same week a 17 year old boy (not driving) got drunk and mad because a
store was closed, hit the window of the store and broke it - one year in
jail plus pay $1200 for the window. But we have a "no tolerance" law
like Texas for drinking passed just for this type of thing. There is
also no program in Virginia for helping the kid locally and he will go
150 miles from home to jail. Where is Pro-Life here? :o) Cutting
taxes by cutting local mental health and rehab programs :o)
Take care, Bill and Charlotte
[LINK]
Pam,
You're right. I have six bird houses spread over an area of about 120' by 80'
(40 X 27 metres) which is mostly wooded except for the front 30 feet (10
metres) :o) The holly bushes are home to 2-4 families of birds a year as they
are dense cover and have the sticker like leaves, even the cats in the
neighborhood don't go in them. The most popular bird house is on a tree about
7 ft from the ground on the NW corner of my yard, it faces the length of his
140 foot driveway which runs the length of my property (he has a pipe stem lot
with a house between him and the road). I know we have had a bluebird, tufted
titmouse, sparrow and chickadee in there, in fact, once I cleaned it out as
soon as the chickadee finished with it and something else built a nest in there
as I had to clean it out again that summer.
Also different birds like different locations. The mockingbirds and catbirds
love the hollies and build their nests immediately under the top leaves (can't
trim hollies until late May). Sparrows also love them and a smaller bird that
I can never catch a glimpse of, but it has an extremely small nest. Cardinals
build up about 12 feet off the ground and like the white pine near our deck
which is great for watching the baby birds grow. We also have a bunch of red
cedars which have old nests in them. generally 8-12 feet off the ground.
Robins always seem to build in my rain gutters, then it rains and they get
flooded out. Purple Martins do not nest on my property as they like open
fields. Our church has a Purple Martin house at each end of the property and
the golf course next to it has many - cuts the gnat population way down. We
also have some bats here, which help with the bugs.
The funniest was the Killdeer. I was cutting the church lawn one summer and
saw this bird flopping around like it was dying. I stopped the mower and it
flopped away from me, leading me away. After several times of watch where it
was leading me away I found it's "nest" which was just a few scraps of grass
and some pebbles laying on the ground with three tiny light brown spotted eggs
(hard to spot from the pebbles). So I mowed a ten foot circle around the nest
(Momma Killdeer put on a great show of dying) and put up some signs to stay
clear of that area (didn't say why except danger). Once the babies were born -
you could see momma and the three little ones running after her often (they
moved close to the golf course after they were born). Only the pastor
questioned me about the sign and area.
Generally birds will not nest within about 10 meters of each other unless they
are flock or community birds. If there is a house in between them that may
change, may be a line of sight thing. We don't have many hummingbirds, but a
friend puts up many many hummingbird feeders and has a "hummingbird bush". As
many as 20 hummingbird nests have been in the holly in one year. You have to
be careful walking around her yard as there are so many. She lives in the
middle of a 120 acre farm.
Take care (if I see your cats watching my birds - I'll shoot them :o), Bill
and Charlotte
Take care, Bill and Charlotte
Pam
You know it's not fair. I've got the birdhouse all over the place,
and I have bird seed's (that's what the rat is after), water in a
bird bath,and I have hummingbird feeder, but do any of them use them.
Well the birds do eat the seeds, but the hummingbird goes
everywhere,but to the feeder and you have them all over the place. Do
you think your getting them all because you have cat's and I don't.
Maybe cat's and birds do go together.Of course you have bird dropping
right? Does that mean Bill is picking on you?
Enjoy Vera
Hi Bill,
You are lookin good to me! Love to Charlotte.
Hugs,
Terri Moller
Hi all,
I hope this gets through. I have gone back and made Netscape 4.77 my primary browser and email handler. From time to time - I may forget as N 6.01 is so much better as a browser, so [INLINE] remind me. This is what I was using before, so I hope it comes through.
Also let me know if you can see the image above. I am sure some of you will not see it.
Take care, Bill and Charlotte
I had no problem reading your messages in the digest up till 24 May
which is when you changed to Netscape 6.01. Since that date, I have
been able to read only the occasional message in the digest. Most
have the message "not in displayable format".
Sure I can read all your messages by going to
I know some folks have been to Dr. Marek ...
This will be another resource for MSA folks ........
I believe this shows that there is promise for more help with neurogenerative disorders - (these docs wouldn't leave otherwise)
and, perhaps, they have to start their own center because Yale has so much gov. support that might be endangered by any trial that the docs feel are promising (only an opinion - but knowing how skittish institutions are about grants and politics ;-).........
cheers,
Sheila
Yale profs to start brain research center
[INLINE]
[INLINE]
[INLINE]
Abram Katz, Register Science Editor June 08, 2001
[INLINE]
[INLINE]
[INLINE]
NEW HAVEN -- Two top Yale scientists are leaving the university to start a non-profit center where they hope to accelerate research into Parkinson's disease and other brain-destroying diseases.
The new Institute for Neurodegenerative Disorders and associated Molecular NeuroImaging company will continue several ongoing studies into the mysteries of neurons.
The center, at 60 Temple St., will be funded by grants from private foundations, pharmaceutical companies and the federal government.
Dr. Kenneth Marek, president of the institute, said he believes medications that can halt, or even reverse, the effects of Parkinson's could be ready in about three years.
The institute will also concentrate on dystonia and Huntington's disease, and eventually possibly Alzheimer's disease.
"Now there is no way to slow or treat Parkinson's disease. We're on the brink of finding a treatment -- stopping progression, and possibly restoring function," Marek said.
"This will change how we look at these diseases entirely," he said.
Marek, who was director of the Movements Disorder Center at Yale University for 10 years, said the institute will concentrate on clinical, patient-oriented research.
"We wanted to work more rapidly.
I found after many years at Yale that we could be more efficient and flexible if we do research independently," Marek said.
Hiring, establishing research protocols, securing contracts with pharmaceutical companies and applying for federal grants will all be streamlined at the institute, Marek said.
Marek and Dr. John P. Seibyl, executive director of the institute, who until the end of July ischief of Nuclear Medicine at Yale, already had quarters at 60 Temple St.
Marek and Seibyl said their departure should not be construed as criticism of Yale.
Irwin Birnbaum, chief operating officer of the Yale School of Medicine, said, "Although this program is not affiliated with the Yale School of Medicine, it builds upon the important basic research and clinical services developed at Yale."
The institute will judge experimental treatments by using single photon emission computerized tomograpy, or SPECT, to check the brains of Parkinson's patients.
Joan LaRose, 60, of Southington, was diagnosed with Parkinson's in 1995 and is among the patients being seen at the institute.
Research lends value to an otherwise bleak condition, she said.
"This puts the disease to the best benefit. It gives you some sense of control," LaRose said.
During SPECT, a protein similar to cocaine and tagged with radioactive iodine is injected into the patient. The cocaine-like molecule is useful because, like cocaine, it has a high affinity for the dopamine system in the brain. The protein, called beta-CIT, seeks out and locks onto dopamine-making neurons.
Parkinson's is characterized by progressive loss of dopamine neurons, which leads to tremor and loss of muscle control.
In less clinical terms, "Parkinson's disease feels like your body is doing things you don't want it to do -- moving when you want to stay still -- or holding still when you want it to move," said Jackie Dorwin, 51, who was diagnosed in 1992.
"We're lab rats," said Dworin, who is on the institute's board of directors.
The SPECT machine's three load-shielded detectors sense individual rays of radioactivity emanating from the dopamine receptors.
A computer takes the data and constructs an image that displays dopamine cells as bright pixels.
A healthy brain shows two bright ovals. A person with Parkinson's has darker or smaller areas.
Seibyl, who is also head of Yale's NeuroSPECT Center through the end of the month, said his departure from the university would free him from administrative duties and allow him to concentrate on research.
About 300 patients in 55 sites in the United States and Canada are currently enrolled in studies that bring them to the Temple Street center.
The institute is participating in studies on:
o The long-term effects of the Parkinson's medicine L-dopa. Some scientists suspect it may increase the rate of progression of the disease.
o Twins, in which one or both, have Parkinson's. This should help define the genetic component of the disease.
o Environmental exposures that might be linked with Parkinson's.
Marek and colleagues will examine workers in Albany, N.Y., who were exposed to high levels of PCBs to see if they have a higher rate of Parkinson's.
Among treatment studies are:
o Anti-oxidants. Some researchers suspect that brain cell metabolism creates highly reactive oxidant compounds and that damage accrues into Parkinson's.
o Glutamate antagonists.
Damaged neurons secrete glutamate.
High levels of glutamate damage additional cells. Blocking glutamate might preserve the brain.
o "JNK" inhibitors. Cells self-destruct when damaged in a process called apoptosis. Out of control apoptosis could, theoretically, cause Parkinson's. JNK inhibitors interfere with apoptosis.
o Neuroimmunophilins are small molecules that cross the blood-brain barrier into the brain. They can be taken orally. Research suggests that they might help re-grow lost neurons.
About 1 million people in the U.S.
have Parkinson's disease and 60,000 new cases appear every year. At age 65 a person faces a 2 percent risk of Parkinson's, Marek said.
İNew Haven Register 2001
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cheers
sheila
Too often we underestimate the power of a touch, a smile, a kind word, a listening ear .... all of which have the potential to turn a life around. --- Leo Buscaglia
Hi Vera,
Birds are very territorial so the houses would need to be spread out over a
wide radius to have more tenants. :) What type of bird do you have nesting?
I enjoy birds and put out seeds in the winter, in summer I have several
ruby-throated hummingbirds who visit my feeder. They are a great source of
amusement for my cats who watch them from the window.
Hugs,
Pam
Dear Sheila,
Thank you for sharing the site address with the group. It was truly an amazing spectacle.
Best wishes,
Jill Lucas (in the UK)
Dear Bill,
I give up! I have written many times that I take the digest and cannot read your messages. I have my machine set to read HTML. Others now say they are in the same boat. This leaves great gaps in the threads of discussion. Now it's not just one lone, insignificant Limey, can you explain why?
Jill Lucas (in the UK)
Very impressive! I am sure I will be back here in the future as Terry's
needs increase. Terry's situation is much the same as Patricia's except
the rate of progression seems slower and Terry is 73. Patricia is blessed
to have your support.
Perry Sennewald 804-244-0018
In a message dated 06/08/2001 6:43:41 AM Eastern Daylight Time,
wwwombat@... writes:
<< I am getting so many blank messages, mostly from Bill, but not only
him, that the digest is becoming less valuable.
For what it's worth, I am not having a bit of trouble with blank
messages--each and every one is coming thru just fine right now-hopefully I
won't have the same problems.
Linda
Pam: Our known total now is $620.00 to Vanderbilt Shy-Drager research. I
know othes have sent amounts direct but do not no how much. What is special
for Jack is all of the neat letters sent our way. It is a living memorial
and he gets to know how special people are while he is still alive to
appreciate them.
Hugs, Judy
Shelia:
Your right this is amazing site. It's so beautiful thank you for
letting us see it.
Always
Vera
you have gotta see this folks ... awesome ...
Subject: Fw: Amazing View of Earth at Night!
Check out the image at the web site below.
The image is a panoramic view of all the lights in the world as viewed from
the new space station.
You can scroll East-West and North-South. Canada's population is almost
exclusively along the US border.
Note Hawaii's islands and Bermuda shining brightly.
Also note how bright the Cayman islands and Puerto Rico are compared to
neighbors Cuba and the Dominican Republic.
See the Azores, off the west coast of Africa.
Check out the development of Israel compared to many of the Arab countries.
Moving further east, take a good look at the Korean peninsula which is the
most striking comparison between a third world country in the North and a
capitalist society in the South.
Not much light in Africa, and you see how empty Australia is. Amazing
picture! You will see how much we really have compared to the rest of the
world. Have a great day.
http://antwrp.gsfc.nasa.gov/apod/image/0011/earthlights_dmsp_big.jpg !
cheers
sheila
Too often we underestimate the power of a touch, a smile, a kind word, a
listening ear .... all of which have the potential to turn a life
around. --- Leo Buscaglia
John, That is a great site. And Patricia is so lovely. I'm sure it will be
interest and help to many. Good work, Debbie
Waverly,
My yucca plants are within 5 feet of the house and we have the ground around the house treated for termites each year - think I will pass on eating yucca. The termite stuff is supposed to kill termites with ten feet. I do fairly well with naproxen sodium for arthritis.
Our back yard is about 40' by 100' and heavily wooded - the people behind us also have about 70' by 100' of wooded area with untouched underbrush. In fact that wooded area runs the length of our two developments (about a quarter mile) with the except of one or two people who cleared it in their yards. So we have a lot of small wildlife roaming around. Our beagle keeps out everything but the birds, so we have many birds without feeding them.
I do have about half a dozen bird houses and lots of pine trees, dogwoods, flowering pear and cherry trees, hollies as well as oaks, hickory, ash and maples. So birds are able to find food fairly easy. If we have big snows which cover the natural food, I do put out some food in the winter. The mockingbirds have built a nest somewhere in our yard every year for at least the last ten years. The robins often build in our gutter - dumb birds and bluebirds frequent our birdhouses as well as chicadees, nuthatches and an occasional purple finch. The hollies in front of our house have to be trimmed big time about every other year and usually have 6-8 nests abandoned in them.
In the winter we have tons of white throated sparrows, juncos and other flock birds. Cardinals, bluejays, tufted titmouse, crows. doves, goldfinch, grosbeak, orioles and swallows are common here too. We also get migrating birds as we are in the eastern flyway.
Take care, Bill and Charlotte
Bill, That is a pretty sight alright! The stalk I guess is what is called- it is greasy looking and looks kind of like a cross between sugar cane and a potato. ? Perhaps that is the root. I know tinctures etc are made from the flowers as well- I have seen only pictures. There must be a website on how to cultivate it- it might be fun. You eat the inside so it does not matter what is on the outside really. The outside is way to waxy. A great cookbook is called Miami spice. But that is not a puree recipe book. I am wondering if a gazpacho version could not be made. If oyu look in that book the nutrional guide to healing, i forget the authors name, they also rave about hte medicinal effects of yucca, as do many south american natives etc. I like it mushed up like mash potatoes - with lots of spices and butter. It does not taste well on it's own as a potato does. Also fried ones are excellent and I ma not even a big fried food fan. It is sort of like planains.
But be prepared, they really fill you like a rock dropped in our stomach, they are that dense. I do take an herbal yucca supplement soemtimes, since I have RA. I like a wholistic approach. We must have some Latin MSA people her ewith great recipes.
p.s. Do you put feed out for these birds ofr do they just naturally flock there?
Waverly,
My yucca has bird droppings all over it :o) it's yucky yucca :o) Do you use the roots, leaves, flowers or stalks? Smells nice when the flowers are blooming. Can't get near it right now, it is next to the Holly with baby mockingbirds in the nest. Mom and Dad mockingbird take a dim view of people or animals within about 25 feet of the nest - a squirrel found out the hard way yesterday.
Take care, Bill and Charlotte
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that is good by me
Waverly,
Warn your anesthesiologist that it helps to hydrate MSA patients with an IV before surgery. Anne in Australia learned this.
Take care, Bill and Charlotte
Bill, That is a pretty sight alright! The stalk I guess is what is called- it is greasy looking and looks kind of like a cross between sugar cane and a potato. ? Perhaps that is the root. I know tinctures etc are made from the flowers as well- I have seen only pictures. There must be a website on how to cultivate it- it might be fun. You eat the inside so it does not matter what is on the outside really. The outside is way to waxy. A great cookbook is called Miami spice. But that is not a puree recipe book. I am wondering if a gazpacho version could not be made. If oyu look in that book the nutrional guide to healing, i forget the authors name, they also rave about hte medicinal effects of yucca, as do many south american natives etc. I like it mushed up like mash potatoes - with lots of spices and butter. It does not taste well on it's own as a potato does. Also fried ones are excellent and I ma not even a big fried food fan. It is sort of like planains.
But be prepared, they really fill you like a rock dropped in our stomach, they are that dense. I do take an herbal yucca supplement soemtimes, since I have RA. I like a wholistic approach. We must have some Latin MSA people her ewith great recipes.
p.s. Do you put feed out for these birds ofr do they just naturally flock there?
Waverly,
My yucca has bird droppings all over it :o) it's yucky yucca :o) Do you use the roots, leaves, flowers or stalks? Smells nice when the flowers are blooming. Can't get near it right now, it is next to the Holly with baby mockingbirds in the nest. Mom and Dad mockingbird take a dim view of people or animals within about 25 feet of the nest - a squirrel found out the hard way yesterday.
Take care, Bill and Charlotte
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shydrager-unsubscribe@egroups.com
Hi, Since I am all new to this, i was wondering if any one has problems with recurrent abdominal hernias. This new one is slightly above the other. The other was done but no screen was used afterall. I had one repaired about 7 years ago now I am excrutiating pain with another. Both have been in the diaphram area which makes deep breathing all the more painful. I am maxing out prilosec and the like drugs to assist with the reflux such a hernia compounds. Since I probably face another laproscopic surgery (en route through navel) sometime in the near future are there also special precautions I should be aware of. I have not had surgery since I was diagnosed with Shy-Drager although. I know I have had problems with the pre-op sedatives and also given prednisone etc. Any feedback? Thanx, Waverley
Are there any studies on the quality of life for people with MSA ? ( throughout the course) - Waverley
John:
I went in and took a fast look at the web site, and plan to go into
it later. Right now I have to go take care of Fred. But I did want
you to know that you did a really good job from what I got a chance
to see. Thank you for all your had work on it.
And the beauty is in the middle of the one picture. Patricia is a
beautiful woman.
Always Vera
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shydrager-unsubscribe@egroups.com
Waverly,
My yucca has bird droppings all over it :o) it's yucky yucca :o) Do you use the roots, leaves, flowers or stalks? Smells nice when the flowers are blooming. Can't get near it right now, it is next to the Holly with baby mockingbirds in the nest. Mom and Dad mockingbird take a dim view of people or animals within about 25 feet of the nest - a squirrel found out the hard way yesterday.
Take care, Bill and Charlotte
Hi all,
Good news from Oz. The Aussies are considering following Great Britian's lead in stem cell research by banning human cloning, but allowing individual cell cloning for medical research.
Take care, Bill and Charlotte
John:
I went in and took a fast look at the web site, and plan to go into
it later. Right now I have to go take care of Fred. But I did want
you to know that you did a really good job from what I got a chance
to see. Thank you for all your had work on it.
And the beauty is in the middle of the one picture. Patricia is a
beautiful woman.
Always Vera
Hi all,
I am trying a new technique of beating the digest thing. This message is being composed in Word Perfect then cut and pasted into an email - that should make sure it is in text form and not some sort of weird attachment.
You do know that you can read all messages at:
Vera,
Charlotte also loved to garden (not me). I used to have a vegetable garden, but Charlotte wanted trees and our whole back yard is shade now. Her iris and yucca plants are still out there :o) but you can't kill either of them. The yucca's are higher than me now. I miss the radishes and cucumbers as those are the worst thing in super markets. Tomatoes and green peppers are pretty bad in the stores also. In the next few weeks we will start getting fresh local corn, but that only lasts for 6-8 weeks here.
That's a lot of bird droppings (46 bird houses) for fertilizer :o) Not only did you give the bird droppings to pick on you, but " still using the same bottle of blonde" as ten years ago is too hard to pass up :o) You must have bought a 55 gallon barrel of peroxide :o)
I am a piker on grandchildren we only have four. But Barb Selleck has a big bunch, I think she has you beat, it seems to me she has nine. Do you spoil the grandchildren to get back at the kids :o)
I've forgotten, where do you live in shake and bake land, we almost moved to the Menlo Park area (South SF Bay) in 1980 when I was offered a job there. Pretty country, but you can have the earthquakes :o)
Take care, Bill and Charlotte
==========================================
Bill:
I really have to laugh. I saw my name from you and the first thing
that went pass my mind was"Geez Bill's picking on me again" and then
I get into the posting what is the first thing you say? Am I picking
on you. That is really funny. Not only do we take care of someone
with MSA, but we think alike. I don't know if that is a good thing or
a bad one. But really the picture of me with Fred on Charmayne's web
site is about 10 years ago and yes I still use the same bottle of
blond. I really haven't changed much since then, the hair is shorter
now, because Heather had it cut for me about a month ago for watching
Hannah all the time, but other then that I look the same. Well mostly
the same, getting a little pot now that I don't get to walk the 7
miles I use to everyday since Fred's illness. Most people can't
believe I'm the grandmother of 8 ( yeah I a!
m), but I love every
minute of that.
I have one up on you , my yard work is done. My mother is a English
war bride and came over on the Queen Mary with the War brides and the
one thing that I have always loved is working in the garden, I have
an English garden. One mistake Fred made was to tell me I could have
flowers, boy do I have the flowers. Whole back yard , whole front
yard . Then I made a Kids garden in the side yard somewhere I could
let the kids plant what they want and take care of. Then the yard is
also going to the birds, Really! I have over 46 birdhouses in the
yard. Not bad enough I have them in my yard, at christmas I put
little bird houses on the tree and little bird ( no! not live ones) I
know it's bad, but I just love my yard, can't help myself.
Now you have one up on me, I have never in my life got 8lbs of ground
beef, but I've never been one to pass up a good deal and it sound's
like you did get!
a good deal.
Me! I'm still only 5'2" , Fred was 6'1" in that picture, but now his
about 5'7" because of the MSA thing that you are talking about.
and I know you do get even, but someone has to keep you on your toes.
Take Care Vera
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NEW SITE to find out all about programs you or your family members can be eligible for ... according to info on the Today show, you can find out correct information in a short time that would normally take you to 20 or more agencies and 10 months to accomplish. GOOD FOR THEM !!!
http://www.benefitscheckup.org/
Tom,
CR means continuous release and releases the carbadopa/ levodopa over about an 8 hour period. Your doctor may not want to prescribe Sinemet because your BP is low already and Sinemet can cause OH (BP drop on sitting or standing). Or they may be worried about interactions with other medicines you are taking. There are conditions which not allow Sinemet use also (i.e. certain heart problems, asthma, renal, hepatic and endocrine disorders).
Take care, Bill and Charlotte
Bill,
I take 2-plain 25/100s at 8am,2pm and 7pm for a total of 600mgs per
day. My neuro has given me permission to go to 1000mgs and
encouraged me to experiment with the timing and dosage. The idea
that less could be more is good news. What is Charlotte's regimen?
As a follow-up, I had a good sleep! Maybe exercise and sunlight are
enough.
Thanks
Steve
Christine,
I am hurting mainly in my back these days... What is that about? Is that
normal?
It is so nice not to feel so alone through all this...
Hugs,
Debi<br clear=all
href="http://explorer.msn.com"
Hey Tom,
Can we try for lunch next Thursday at Outback-maybe
this time will work??
Gail
=====
Gail
gsouthwick@...
Debi,
The fatigue is overwhelming. On weekends when I am home, I do take
lots of naps. when I work obviously I can't, so when I do get home,
I am worthless because I can't even think straight!
Christine
For some time now I have been working on a web site. I started it
primarily so that other Australians might find some useful
information that might help them. It is possible that it may be of
use to people in other counttries as well. It is also dedicated to
my wife Patricia.
Now that I have switched to cable, I have moved my site across to the
new service provider.
For those who might be interested, the address of the web site is:
http://members.optushome.com.au/wwwombat
Any constructive comments on the site will be gratefully accepted. I
am considering developing a page where Carers and or sufferers can
post their stories. Please understand that I still have a lot of
work to do before it is finished.
Regards
John aka the wombat
Hi
My story sounds just like yours. They wouldn't let me go home with
my gallbladder after my first bout of pancreatitis because they were
afraid. My levels were so high they said they couldn't take the
chance that my gallbladder was the problem. I never had any
gallblader problems though, and that seems to be the start of all of
this pancreatitis stuff.
Bonnie, I hurt all the time when I eat. No matter what I eat. Or
when. But like you, I hurt mostly in my back. When I hurt in the
front, I better be on the way to er. But you are so right. What can
they do anyway?
Talk to you guys soon.
Be well,
christine
I am getting so many blank messages, mostly from Bill, but not only
him, that the digest is becoming less valuable.
John aka the wombat
Hi Pam,
Welcome! I am so glad you are here. What a thing that binds us all
together! Yes, it is a life-changing disease, isn't it? I am glad
you are feeling better. Sounds like you have been through the mill.
the weird part of this whole thing is how many of us have separate
issues going on as well as the pancreatitis. I wonder which came
first? Becky has lupus, Linda and Joey have this lung thing going
on. Many here have diabetes. I have Addison's. It is so strange.
It would be interesting to know how they affect each other and if
one caused the other etc. I am fascinated by this stuff.
Anyway, good luck in your quest with the diabetes questions. Make
yourself at home here. We are just one big happy family.
I too love Dr. Sherman! I am currently doctoring at the University
of Michigan but have been to see Dr. Sherman once and hope to have
all of my pancreatitis issues doctored there soon. I am on tpn right
now and they won't take that over since U of M started it. After
that is done, I will be moving all my care to Dr. Sherman. Isn't he
great?
Be well,
Christine
Dear Becky,
Of COURSE you can take this info to your doc. I understand totally
where you are. I whined monthly to my gastro about the nausea etc.
She finally must have gotten sick of it and decided I was for real
and I was not going to change my story, because she finally ran the
cortisol test. I wonder if it is so rare, or if they just don't
diagnose it?????
I have been sick with an assortment of ailments for years and felt
like a baby, hypochondriac, etc because no one would take me
seriously. You just want to jump up and down and scream! I live in
this body-I know when something is wrong.
I actually had low cortisol levels two years ago. The
endocrinologist locally never followed through either because he
wasn't aware this stress test is available, or he was incompetent. I
vote for both, although the second sticks more in my mind. After
seeing how low my blood pressure was (also a sign of adrenal
insufficiency, btw) he wanted to put me on antipressents-PLEASE!-and
told me-get this-to eat as many potato chips as I wanted to bring the
blood pressure up. Imagine that! And he being a specialist. At any
rate, I am glad I am with the doc in Ann Arbor. We will see how this
all pans out. Now if I could just start eating :-)
Talk to you soon,
Christine
Bill:
I really have to laugh. I saw my name from you and the first thing
that went pass my mind was"Geez Bill's picking on me again" and then
I get into the posting what is the first thing you say? Am I picking
on you. That is really funny. Not only do we take care of someone
with MSA, but we think alike. I don't know if that is a good thing or
a bad one. But really the picture of me with Fred on Charmayne's web
site is about 10 years ago and yes I still use the same bottle of
blond. I really haven't changed much since then, the hair is shorter
now, because Heather had it cut for me about a month ago for watching
Hannah all the time, but other then that I look the same. Well mostly
the same, getting a little pot now that I don't get to walk the 7
miles I use to everyday since Fred's illness. Most people can't
believe I'm the grandmother of 8 ( yeah I am), but I love every
minute of that.
I have one up on you , my yard work is done. My mother is a English
war bride and came over on the Queen Mary with the War brides and the
one thing that I have always loved is working in the garden, I have
an English garden. One mistake Fred made was to tell me I could have
flowers, boy do I have the flowers. Whole back yard , whole front
yard . Then I made a Kids garden in the side yard somewhere I could
let the kids plant what they want and take care of. Then the yard is
also going to the birds, Really! I have over 46 birdhouses in the
yard. Not bad enough I have them in my yard, at christmas I put
little bird houses on the tree and little bird ( no! not live ones) I
know it's bad, but I just love my yard, can't help myself.
Now you have one up on me, I have never in my life got 8lbs of ground
beef, but I've never been one to pass up a good deal and it sound's
like you did get a good deal.
Me! I'm still only 5'2" , Fred was 6'1" in that picture, but now his
about 5'7" because of the MSA thing that you are talking about.
and I know you do get even, but someone has to keep you on your toes.
Take Care Vera
I agree with Dianne's comments. Marilyn in TN
From: "Joe Allhands" <yaz@...
Hi Alicia,
Yes, it is a steroid. thanks for the info. I had a slight flareup
last night, so this will be interesting. I don't much at all about
this as a combination issue, so any info is apppreciated. We will
see how it goes.
Thanks!
Christine
Vera,
Are you trying to pick on me again :o) These people from "shake and bake" land are getting as bad as the Aussies - but watch out - I get even - ask Anne.
You wonder how I get it all done. I don't get it all done, the house is a mess :o) The back yard is a jungle. The girls planted some flowers on Mother's day, but if it doesn't rain often they will be dead in a few days. Charlotte doesn't go out back anymore, so there is no one to see them. I pay people to do yard work and house repairs these days. :o) I also let the wash back up - then have to do wash for two days straight.
Asking questions is not dumb. Making a mistake is not always dumb. Making the same mistake a second time is dumb (except on a computer - then it's a dumb computer :o)
No fibbing now - the picture of you on Charmayne's website is a couple of years old :o) You notice that Charlotte and I have changed a little between the 1958 and 2000 pictures :o) although Charlotte weighs now what she did in the wedding picture (I'm heavier :o) about 70 pounds). They also call me graybeard now, :o) in 1958 both of us were blondes. Charlotte was never a dumb blonde. If you notice the 58 and 2000 pictures also - Charlotte was 5'10" and I was 6' even - I'm still 6'. MSA strikes again.
Our grocery store had a sale on ground round last week - basically you bought 4 pounds of ground round for $10 and you got another 4 pounds free - so I made 8 pounds of chili - we have several weeks of meals frozen :o) It is something that Charlotte can still eat (no beans in hers), but I do this with soup, casseroles, etc. Nuke'em in the microwave and you save a lot of time. God bless the scientist who came up with the cheap plastic containers.
Then too, I get free meals a lot. Our local Republican candidate for the state House of Delegates has invited us to his big bash (which he is paying for, it's not a fundraiser). I'll get the kids to watch Charlotte and go harass my Senators and House member who will be there also. I was going to support this candidate (an engineer) anyway as he is fighting the Governor for better roads and the Democrat running against him is not as effective or as intelligent (he's a lawyer :o). Just so I'm not accused of being any Party in the next election, I am supporting a Republican, a Democrat and Mickey Mouse for different offices. Mickey actually got 127 votes the last time, but he is not a registered voter here, so even if he wins, he can't serve.
As Anne would say "That's enough earbashing for now".
Take care Bill and Charlotte
=================================
I was born blond Bill, but now it comes out of a bottle about every 8
weeks.So I shouldn't be asking so many dumd blond questions.
Anyway I would love them to fine the cure to this illness in what
ever way they need to. It's a shame that so many have to suffer from
it and so little is known about it. That why I'm so glad to see that
so much has came in from the fund raiser of the 500th member. Close
to the $10,000.00. Every penny helps, and it could be just what they
need to fine the answer.
I went into Charmayne web the other day and saw the picture's of you
and Charlotte. Also the ones that you have on your web site.
Fred has the opca,snd and the sds. It started off on the left side,
but over time it is starting to show up more and more on the other
side.
I know you said that about 240,000 cells die off before the illness
show sign's o!
f problems, but when it show up ,it hit's hard and fast.
Sometimes I wonder how you do it all. Taken care of Charlotte and
then the other things that need to be done and then to answer or give
help to so many on this group. Just wanted to say Thanks.
Always
Vera
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Christine,
I am guessing the cortisol is a steroid? I was told, and have had the
experience, steroids cause pancreatitis flare-ups. I was told if I have to
put hydrocortisone on my son for maybe a diaper rash (only for example) I
should wear gloves because the steroid can soak into the skin. I am sure the
Docs know what they are doing, I was just worried, dont want anyone to get
sick if they dont have to.
Sincerely, Alicia
I was born blond Bill, but now it comes out of a bottle about every 8
weeks.So I shouldn't be asking so many dumd blond questions.
Anyway I would love them to fine the cure to this illness in what
ever way they need to. It's a shame that so many have to suffer from
it and so little is known about it. That why I'm so glad to see that
so much has came in from the fund raiser of the 500th member. Close
to the $10,000.00. Every penny helps, and it could be just what they
need to fine the answer.
I went into Charmayne web the other day and saw the picture's of you
and Charlotte. Also the ones that you have on your web site.
Fred has the opca,snd and the sds. It started off on the left side,
but over time it is starting to show up more and more on the other
side.
I know you said that about 240,000 cells die off before the illness
show sign's of problems, but when it show up ,it hit's hard and fast.
Sometimes I wonder how you do it all. Taken care of Charlotte and
then the other things that need to be done and then to answer or give
help to so many on this group. Just wanted to say Thanks.
Always
Vera
Donna,
I am glad we have been a help to you and Cameron. I have found the group
very informative also. Good luck with your entire family. Hope things go
well at the Doc's visit.
Sincerely, Alicia
Linda
Thank you very much for asking about Joey. He actually has been doing
incredibly well for the last couple of months. He spent his first
holiday season ever without being hospitalized once. We have been
thrilled! We have certainly learned not to take one single day for
granted. Every day that we can all be home together is like a gift.
Joey handles living with disease so incredibly, never feeling sorry for
himself. Recently, the principal of his school nominated him for a
special issue of our local newspaper about local heroes. She wrote the
most beautiful things about him. I would like to include a quote from
her letter: "Joey sees the opportunities that life has to offer and
cherishes every opportunity that arises. He could sit down and give up.
Instead, he works and plays hard, and loves every chance he is given to
live life to its fullest with friends and family." He is an inspiration
to me and that's what helps me get through this.
Suzanne
*bowing*
Anytime I can be of assistance Linda! *laff*
I never mind if I can bring a smile to someones face!
Besides, it's probably true! Lake Michigan is full of yuck!
Hope your feeling human today! Love, Becky
Hi all,
I got this through an email alert system today and the website is good, so I am assuming the info is good.
Take care, Bill and Charlotte
The Coalition for the Advancement of Medical Research (CAMR) has learned that the Bush Administration may announce as early as Friday, June 8 or Monday, June 11 a decision on whether federal funding will be available for research on stem cells that are derived from fertilized eggs. We do not know what the details of this announcement may be, but we believe that the decision may be negative.
Many of you have already called the White House on this issue, but we need you to take action again. We need EVERY SINGLE ONE OF YOU to call the White House AS SOON AS POSSIBLE to register your support for research on stem cells that come from fertilized eggs.
Following are talking points for your calls:
1. Call the White House Office of Public Liaison at 202-456-2380.
2. Explain (or leave a message) that you support research involving stem cells that are derived from fertilized eggs.
3. State that you have learned that President Bush is considering banning this research and that you want to urge him to support it because it could be critical to curing diseases and conditions like Parkinson's, Alzheimer's, spinal cord injury, diabetes, heart disease, cancer, ALS, and many others.
4. Explain that 70-percent of all Americans support this research, including a majority of Catholics, Fundamentalist Christians, and pro-life individuals.
5. Be sure to leave your name and address.
PLEASE TAKE ACTION AND MAKE THIS PHONE CALL. WE NEED TO DO EVERYTHING POSSIBLE TO EXPLAIN TO THE PRESIDENT WHY IT IS SO CRITICAL THAT THIS RESEARCH MOVE FORWARD.
For additional information on stem cell research, see http://www.stemcellfunding.org/
Thanks for your immediate help on this very important matter, and please forward this message to your friends and loved ones.
Tammy and Steve,
Are you ok? I haven't heard from you for a while!
Becky
Has any one heard from Karen Weston? Karen if you read this please
email me... I am worried about you!
Becky
Christine,
You are right... this is of quite interest to me! I would be
interested in knowing more about this . I see my internist next
Friday.....can i take your letter with me to the Dr? Thank you so much
christine for this info! I wish I could tell you how much research I
have been doing.... but I can't even explain it! That is why my
involvement with the group has been limited lately! I am trying so hard
to find a way to convince the Dr I AM REALLY sick! Pretty sad when you
stress out over trying to get someone to listen to you! At any rate
thank you so much! i am glad your problem has been found! *hugs*
Becky
I have been doing a little research on my "new" disease, adrenal
insufficiency. Becky, you'll appreciate this. It is a chronic
immune function disease. The doctor wants to do a little more
testing to find out if it is the adrenals themselves or the pituitary
that is not communication with the adrenals. At any rate, the
adrenals don't work. Therefore, whenever I have an attack or other
stressful event on my body, (i.e. gallbladder surgery, ercp, etc), my
body doesn't tell the immune system to kick in and help me get
better. That MAY be part of why I haven't gotten better.
The good news is that it is manageable. I have to take synthetic
cortisol for the rest of my life. They will never "kick back in".
The serious side of it is that I need to wear a MedicAlert bracelet.
If I have an accident or need emergency surgery, they must inject the
cortisol or it may be life-threatening. This disease is very rare-
less that one tenth of one percent of the population. Leave it to
me! I know you guys appreciate THAT!
A stray letter from the Old ShyDrager list. Please reply directly to
byers@... as I don't think she's found her way to this new list yet.
Regards,
Pam
I also have something else going
on in the base of my right lung, they call it ateletesis (sp?), its
like a dried up sponge. He said it will always be like that, and it
can cause some problems, bacteria likes to settle there if it gets a
chance. And here is the shocker..........I told him the last 3 times
I've had a pancreas flair-up I've had pneumonia, and this time its
the bronchitis. I ask if the pancreatitits has anything to do with
it. He said, Oh yes, it has everything to do with it. He says that
first of all, when I'm having a flair-up and all the pain, I don't
breath very deep because it hurts too bad, and also during a flair-up
there is all kinds of infection going on, and since it is so close to
the lungs, chest area, that is where it will spread too.
Linda
I wanted to let you know that my 11-year-old son, Joey, who has chronic
pancreatitis, has also had pneumonia many times with acute attacks. One
time, they felt that the pneumonia came first and caused his pancreas to
flare up. He has also had atelectisis(sp?), but luckily it corrected
with an incentive spirometer (he had to blow the little balls up the
tube). Joey has also had episodes where his entire chest has filled with
fluid from the pancreatitis (even his heart was surrounded with fluid).
The pressure from the fluid outside the lungs causes problems with his
breathing. He takes many inhalers because he also has asthma.
Suzanne
Pam,
I am in Bay City which is about a half hour north of Flint I think I am
about 2 hours from you if I am right you are by Detriot right? it would be
great if you want to come for the support group the more the merry so they
say...lol I will give you more info as I get it... thanks and How areyou
feeling...????
Wishing you all a
pain free day Anna from Michigan
Many of us have already pledged a donation in honor of our 500th
member. Thanks much to Pam for her inspiration and follow through.
Now here is a "new" source of fundraising! Many of us have recently
learned that within 6 months or so we will be receiving a $300 refund
from the U.S. Govt. ($600 for some couples) The way I see it, if we
really believe that the Federal Government should be funding
Shy-Drager research, here is a chance for us to put...well, er...our
money where our mouths are. With the refund from the government, WE
can allocate funds to fight Shy-Drager.
It doesn't matter what you think of tax reform or whether you are a
Republican or Democrat. The choice is now in our hands!
Since I made my initial plege to Shy-Drager research before hearing I
was gettng a tax refund of $300, now I am going to pledge an
additional donation that will come out of my $300 refund. And I am
asking whether others want to do the same.
Now I realize that members of this group have a wide variety of
economic resources and challenges. I realize that many need every
dollar for every day living and caring for loved ones.
But one of the purposes of this shy-drager group is to have a sense
of commonality and mutual support. Therefore, we would draw great
sustenance and strength by knowing that EVERYONE in our group is
participating in this fundraising, even if it's just donating ONE
DOLLAR. It's our way to honor Pam, our families and each other.
Let's go for 100% participation in this fundraising effort.
I urge everyone who is getting a $300 tax refund to pledge some of it
to this fundraising effort. And I urge everyone reading this message
who hasn't pledged yet, that a contribution of even ONE DOLLAR is
just as important and meaningful as contributions of greater
amounts.
I hope everyone takes this little "outburst" in the positive spirit
it's intended.
Take care.
Tammy -
Me too - and I do not have stents. Isn't this a WONDERFUL disease!!!!
Good luck and hang in there!
Love Staci (California)
Vera,
:o) I didn't know you were a blonde :o) Charlotte used to be, but is now gray. Very few people on the list have exactly the same symptoms, some examples:
Anne has almost pure SDS (still)
Charlotte has a lot of balance problem (OPCA) rigidity (SND) and a little OH (SDS)
Fordy has almost the same as Charlotte but it affects his left side and Charlotte's right side
Other's have the rigidity but no balance or no OH problems
You have about 400,000 brain cells and about 240,000 of them die before problems show up. It depends on which ones die as to what problems you have. If you read the article someone put on the list yesterday, it again pointed out that in pluripotent stem cell research - the only cells discarded are the totipotent cells which become the placenta (afterbirth). So we would be saving the 100 cells to grow into millions of new brain cells in order to save many people. If that is wrong ethically, then why is transplanting hearts right? Livers? Kidneys? Blood?
Take care, Bill and Charlotte
Bill:
I know it was the dumd blond question again, but had to keep you on
your toe's. I guess it worked .lol . I know there is three type's of
ice cream with this illness and there is alway more of one flavor
then the next,but it's always nice to see if someone else has the
same flavor once in awhile.
Take Care
Vera
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Ah Debi, Thanks!
My family? I bet most days than not they would like to sell me to
the traveling circus - you know those bad, awful, pain filled days,
when all we are is grumpy & bitching about everything? Yeah, they
would just be happy to get rid of me, I'm sure. But thanks. Its
good to know I'm appreciated somewhere! lol
Lots of Hugs, Linda
Our fundraiser in honor of the 500th member to join our group is still
in progress. Our total raised to date is $9,855.00!
This is a wonderful result yet I know we can still do much better as
we have heard from less than half of our members so far.
We have very few $10 pledges and these are the ones that can add up
quickly if each could give that much.
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 favourite
charity(the list is below) and drop a note to Bill b.werre@...,
Cindy cav285@... or me pbower@... and let us
know the amount of your pledge if you wish to have it counted in our total.
These are the totals raised so far for the various charities:
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)
Nat'l Org for Rare Disorders 50
Parkinson Society Canada 350
Parkinson's Australia 275
SDS/MSA Support Group 325 (includes $150 in previous donations)
University of Michigan 500 (recent memorial donations)
Vanderbilt University 6120 (includes $3000 in previous
donations)
Unspecified 1760
Dear Linda,
Yes! The name of the med is Zofran. It is expensive and they didn't offer it
until the Reglan just wasn't working. Thank you for jogging my memory.
Love, Lori
Bill Werre,
See the following. That is an exact copy of how the last x messages in
Digest # 758 came through. My e-mail program does not edit the digests.
Bill:
I know it was the dumd blond question again, but had to keep you on
your toe's. I guess it worked .lol . I know there is three type's of
ice cream with this illness and there is alway more of one flavor
then the next,but it's always nice to see if someone else has the
same flavor once in awhile.
Take Care
Vera
Crystal!
It was so great to hear from you! I tried to look up your phone #
to call you and check up on you....couldn't find it! But I wanted to
let you know I hae been thinking of you and wondering if you were ok!
I'm sorry you didn;t get your block done! But I am glad you didn't
go through with it since you weren;t feeling good about it! My Dr.
always tells me if you are do not feel 100% about a procedure don't do
it!~
Well I am glad you are reading our posts still and I was so glad to
hear from you!
Take care of you! Say hello to Grayman for us!
Love, Becky
Cindy, I remember when the Connection was local to the Boston area
listeners. One of my favorite program was about Dr. Seuss books. Debbie
I will keep you posted on any info I get. Again, they are not promising to
alleviate all or even any of my Dad's symptoms. He is just in such bad shape
and so young that they granted him this as a last hope if you will.
We now that it is invasive surgery. I think my Mom meant to say-low risk.
With any surgery there is always a risk-even death-but my Dad really has not
quality of life left. We would just like to see even the most minute
improvement.
Again, I will keep you all informed.
Take care,
Danielle
Hi Janet,
I came up with this Neopolitan ice cream analogy awhile ago to explain
Multiple System Atrophy and it's 3 flavours. (Neapolitan ice cream is that
3 flavoured ice cream with strawberry, chocolate and vanilla all mixed
together.)
Think of it this way:
Shy-Drager Sydrome(SDS) is the strawberry flavour of MSA
Olivoponto cerebellar atrophy (OPCA) is the vanilla flavour of MSA
Striatonigral Degeneration (SND) is the chocoloate flavour of MSA
Everyone with MSA gets a scoop of the MSA ice cream just as everyone at a
birthday party gets a scoop of Neopolitan ice cream in their dish. If you
were at the party and looked at your dish and at the dish of the person next
to you you would notice that there is not the exact same amount of vanilla,
chocolate and strawberry in both of the dishes.
Whether someone is told they have SDS or SND or OPCA they all have one scoop
of Neapolitan ice cream in their dish. They all have Multiple System
Atrophy.
If their symptoms are mainly ataxia they have mostly vanilla ice cream in
their dish (OPCA). If their symptoms are mainly Orthostatic hypotension
they have mostly strawberry ice cream in their dish(SDS). If their symptoms
are mainly tremors and slowness of movement they have mostly
chocolate ice cream in their dish.(SND) If they have symptoms of all three
then they might have pretty equal amounts of chocolate, strawberry and
vanilla in their dish.
One thing about MSA though is that over time the amounts of the flavours may
seem to change spontaneously and those who used to have just a little
strawberry flavour or SDS symptoms may develop more of them... in fact each
of the flavours may become more pronounced as time goes on... but this will
vary from person to person.
I hope this helps you understand MSA a bit better.
Take care,
Pam
I am new to the list (again) and fairly new to the idea of my MOther having
alzheimers. I know she also has Parkinson's and it is very difficult for
both of us, although I am not sure she knows she is having difficulty most of
the time. Some times you can tell she is agreeing with you even tho she does
not have a clue as to what is being said, she is just being polite.
I do have a question (or 2) about eating. Lately she has not been eating
very much at all, and she is under 100 pounds. For about the past week or
even more, it started with her not swallowing her food. She will take bites
(very few) and chew for eternity but not swallow! Soft stuff she would eat,
mashed potatos, ice cream etc. Then she started not swallowing at all, so
the dr had to prescribe pureed (sp?) food. Now she still does not want to
eat--but this is sort of iffy. She went for a swallow test on Friday and
before the test she ate about 70% of her breakfast, and about 1/2 of her
lunch (believe me, that is good for her). Then she quit. She might take 3
or 4 bites but then she won't take more. If I feed her, she will take it in
her mouth and hold it (soft food also), until I put the water to her mouth
and make her take a sip or two--then she swallows. I can make her eat
everything, but it is difficult and extremely time consuming. She also
drinks Ensure 3X a day. At one point she was so weak, she was almost falling
out of her wheelchair, that is why I had the dr come in. She is in an ALF
that has an ECC license. They are super people and do a great job as far as
I can see.
I live about 30 miles away, round trip, and have been going in to feed her in
the AM, then staying for lunch. She was told by the nurse that visits that
if she does not eat, she will have to have a tube put into her stomach for
eating. I don't want her to starve to death, yet I know what will happen if
she has a tube, she will be even worse then she is now. Anyhow, if anyone
can offer any suggestions in the eating department I would be eternally
grateful! Linda
Thanks for asking! Yeah, the endocrinologist is young. She is
oriental, so it is hard to tell how old she is, but I would guess low
thirties. And she was so gentle and nurturing. She actually thanked
me for coming in to see HER! I think that attitude goes a long way
toward doctor/patient relationships! It was great!
As far as the weight thing goes...they are already threatening to put
me back to full strength, so if I do go down anymore, they won't
allow me any input, they will just do it! But yeah, i will watch
it! Thanks!
How is your father in law? Still hanging in there? Let me know
what's up. When do you go to IU? That is the most awesome place I
have EVER encountered! If I go any further with this stupid disease,
that is definitely where I am heading. Dr. Sherman is wonderful and
I hear the same about Dr. Lehman. Good luck and keep me informed
about you!
Be well,
Christine
Louise,
Watch out for Allison. It looks as if she is there.
Take care, Bill and Charlotte
=====================================
Yo Troops, Good stuff for oldtimers on homecare, too. Jan moves not at
all and recent changes include a padded travois to roll him into and haul
him African Queen style through the garage door away from the house if
necessary. This is kept under his bed. Lift and sling, electric attendant
chair and van are useless now and too slow if lightning or smokehad
occurred in the past. Generators are a must here where power outages are
weekly occurrence. Be prepared is a fine song. Thanks W and Bill . LA
Louise where the gourds grow a foot a day.
To unsubscribe from this group, send an email to:
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I am finally catching up to the posts again. To answer your
questions, no the sphincterotomies didn't do much for me. But my
situation is a little different in that I have an actual twist in my
pancreatic duct. I liken it to unkinking a garden hose. The minute
you let go of it, it twists right back up again. I am wondering if
this is not what is happening to me! I had to have both stents
removed. Some people pass them, but I wasn't one of them. Get
this. The last time I was in the hospital for pancreatitis, they
sent me from the local er to Ann Arbor. They loaded me up with
morphine and shipped me off. They didn't want anything to do with
me. I was in the hospital for two weeks and had to have the stent
removed. My doctor's office in Ann Arbor called up here to my home
to tell me to make an appt to have the stent removed. The doctors in
the hospital didn't even tell them I was in the hospital DOWN
THERE!!! Communication. Such a small thing.
Yeah, I try to keep my attitude and spirits up! Thanks for
noticing! Some days I get discouraged, but it doesn't last
long.....however, I am having a "down" time now. I started the new
meds for my "new" disease and I know that I need to give it time.
But, it can't help the pancreatitis and I still cannot eat! I am
still on tpn of course, but what the doctors are gonna do is anyone's
guess! Everytime I eat anything, the pain starts. If I only eat at
night, I can go to bed and it is better when I lay down. If I eat
early, I hurt more and I hurt the whole day. What to do?.......I
know what you mean about the viokase. I don't notice any difference
either although I try to make it a habit to take it....why I am not
sure, if it doesn't help. Maybe I think it will start to help.....
I am sorry to hear they postponed your ercp. I hope you have a good
week. Are you functioning?
Oh such a disease that brings us together.
Take care of yourself. You are on my mind and in my prayers dear
heart.
Be well,
Christine
Hi Guys!
I have not stayed caught up on the posting since I got back from Ann
Arbor, so I thought I would post an update and then play catch up.
I have been doing a little research on my "new" disease, adrenal
insufficiency. Becky, you'll appreciate this. It is a chronic
immune function disease. The doctor wants to do a little more
testing to find out if it is the adrenals themselves or the pituitary
that is not communication with the adrenals. At any rate, the
adrenals don't work. Therefore, whenever I have an attack or other
stressful event on my body, (i.e. gallbladder surgery, ercp, etc), my
body doesn't tell the immune system to kick in and help me get
better. That MAY be part of why I haven't gotten better.
The good news is that it is manageable. I have to take synthetic
cortisol for the rest of my life. They will never "kick back in".
The serious side of it is that I need to wear a MedicAlert bracelet.
If I have an accident or need emergency surgery, they must inject the
cortisol or it may be life-threatening. This disease is very rare-
less that one tenth of one percent of the population. Leave it to
me! I know you guys appreciate THAT!
The doctor thinks I should start feeling better soon, however, she
cannot predict that because of the wild card pancreatitis thrown in
the mix.
The bad part is that I am still not able to eat. I go back to my
gastro next week. I wonder what she will say to that?! She has
been hounding me for weeks to get off the tpn and now with this new
diagnosis, I think she will be more so. I would like that, but I
cannot eat enough to sustain myself. Oh well, take it one thing at a
time, eh?
Anyway, that is the latest. If any of you have any insights or
information on this disease, please let me know!
I appreciate all of you guys!
Be well,
Christine
Yo Troops, Good stuff for oldtimers on homecare, too. Jan moves not at
all and recent changes include a padded travois to roll him into and haul
him African Queen style through the garage door away from the house if
necessary. This is kept under his bed. Lift and sling, electric attendant
chair and van are useless now and too slow if lightning or smokehad
occurred in the past. Generators are a must here where power outages are
weekly occurrence. Be prepared is a fine song. Thanks W and Bill . LA
Louise where the gourds grow a foot a day.
Hi Anna,
Where in MI are you. I am in Branch County, Coldwater to be exact. We
(husband and 2 boys) moved here from Elkhart, Indiana, last May.
I would be interested in learning about the support group you all are
getting together. Although I don't suffer from the chronic pain so many
have, I have had residual health problems from loosing so much of my
pancreas.
I hope you're having a happy day.
Pam
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Greetings!
I wanted to share with you information about a radio program that I really
enjoy. It is called The Connection and it comes out of WBUR in Boston on
some National Public Radio stations. It is a fascinating talk show-format
program where a broad variety of issues are discussed from art to health to
science to politics and more.
I thought of all of you for a couple of reasons: 1) on May 14th they did a
program on stem cell research. One of the guests on that show was Morton
Kondrake, whose wife has Parkinson's. 2) I thought you might find it
interesting. Maybe some of you are already familiar with it.
I don't get the program where I live in Mississippi on our local NPR station
so I did a little research and found that you can listen to all of the past
programs by going to their website at www.theconnection.org. You will need
to download RealPlayer to listen. It is very simple to download (and free)-
just click on the icon provided on The Connection's website and it will load.
It takes a while (about 20 minutes, I think). Once it is downloaded you can
go through the site and search the archives by topic, date, etc.
Today, as I did my ironing, I listened to a facinating show called "Living to
100" which aired on 5/8/01. Most of us won't be so lucky to live that long,
but I found it really inspiring to hear what centenarians had to say about
how they reached such an age. One comment was on the connectedness that
these people have to others in their communities and the support, happiness
and encouragement that they find there.
I guess that is the other reason I thought of all of you. Since joining this
email group my life has truly been enriched. I have learned so much, been
challenged to think harder about this illness and have found your personal
stories moving and inspiring. The community that you all offer gives me much
to get through each day and work toward a better future.
Thanks!
Cindy V.
P.S. Back to ironing :-( and the next program. Let's see . . . do I want
to hear about international human rights or the dodgeball controversy?
Linda,
You are just too sweet! I hope your family knows how lucky they are to have
you!
Thanks for everything!!!!!
Debi<br clear=all
href="http://explorer.msn.com"
I missed some stuff in my first answer. See revised outline below.
Bill
- Whom to call in case of emergency at odd hours (e.g. unusual
fatigue, fever, etc)- home health nurse? GP? Neurologist? When to go
to ER?
I don't know about Canada, but here in the USA - if it seems life-threatening call 911 (rescue squad) and get the patient to the emergency room (ER). GP's are not always there on off hours. If it is not life-threatening call the GP the next day - they can get the neuro to see you early better than you can.
- Reinforce methods to deal with urgent symptoms (e.g. if fainty from
low BP, techniques to lift if fallen)[old hat to those dealing with
this dz for eons, but for us neophytes doesn't hurt to hear things
again, also to inform other family members who try to "help" by e.g.
holding the person upright while fainting!]
....
I added that the family be involved in both planning and a few therapy sessions.
. Prescriptions
- Potential side effects/drug interactions, dosing schedule and
rationale
....
I added Possible side effects to I.A.4.c
2. Home help - phone numbers
....
- Occupational therapist "home safety evaluation" (assess your home
for potential hazards, suggest where/how to set up
adaptations/equipment, etc. - preferably before retuning home, if not
then shortly afterwards)
I already had II.B.1.b - Adaptive suggestions for home but added to Social worker list also
Vera,
You should know by now that there are no absolutes with MSA and things ALWAYS change. Charlotte does not sweat much below the neck. But once in a while she floods the bed with sweat. Either too much or too little - the story of MSA.
Take care, Bill and Charlotte
Dear Linda,
I thought you had something wrong with your lungs! How does the medicine mix
with
everything else your taking? Are you breathing pretty well still?
That is great that you have a dr you love! Too bad he isn't a GI dr!!! It
sounds like
he really took his time with you, and went over everything! Doesn't sound like
he has
missed anything! How long will it take to clear the lungs up? So, I guess you
have to
be very careful in the winters not to be around sick people...??? That would
make
sense though...
HAPPY FRIDAY!!!!
My husband got mad at me for not being well enough to go to dinner on Valentines
Day,
but then he got over it. I don't care anymore. He can get mad all he wants, I
can't let
it bother me. That is his problem. I have my own right now...
You sound very chipper! I'm happy for you! How old are your daughters? I have
a son
that is 12 1/2 yrs old. If I survive this hormonal change thing going on, it
will be a
miracle!!! LOL
Well, gotta get to work. I usually start hurting in about an hour... I try to
get the most
complicated work done before I have to take a pain pill....
Have a great day! Hollar if you need me!
Hugs & Happy Thoughts,
Debi
Dear Debs,
I am so sorry - it sounds like an incredible trial for you. Mike had a celiac
block done just today. He said a majority of the pancreas pain is gone, but not
all. However, his nausea was not relieved by the procedure. But there are some
new meds out for nausea and one in particular has been effective - darned if I
can remember the name but they are using in now in oncology wards. Are you
diabetic? Could you be experiencing nerve damage in your stomach due to
gastroparesis (stomach neuropathy)? It can cause abdominal pain, nausea,
bloating, vomiting. They expect that is the case with Mike because of his 10
years of relatively high glucose. Or would that be treated by the nerves you
have had severed previously. They tried feeding Mike last night with a tube from
his nose down to his duodendum, but he couldn't keep it down.
When I am reminded of the name of the nausea med will speak up. Also I know
some of the "narcotic" pain relievers can cause nausea and shakes. I am
learning so much - it's all whirling around in my head right now. I pray God's
tender touch for you tonight Debs (or this morning since we are in opposite time
zones.)
Bless you,
Lori Karns
Hi Lori,
Sorry to just butt in like this, but could the nausea med you
mentioned be zofran? My doctor offered it to me, but it is about
$80.00 - $100.00 per pill! and even with my insurance co-pay I
couldn't afford it! I hope I was some help. I know how hard it is
for you with Mike still in the hospital. I hope he get home soon.
Lots of Hugs. Linda
I know someone who's father donated his body to science so I think I know
what was meant about helping with the funeral expenses. When you donate
your entire body to science they only use it for a year or so. Then they
cremate the body along with others that have done the same. In the case of
my friend's father there was a burial ceremony of the ashes a year or so
after the death and this was not paid for by the family in any way.
Regards,
Pam
Thats It! ocetratride (spelling is wrong (?)) is the generic name
for sandostatin! Thanks Crystal! So, you are doing the long-acting
once a month shot, right?
I tried that last Feb/March - then I got the 2 blood
infections/pnemounia/pouch of fluid outside my lung/3 week hosptial
stay. So, my doctor said I had been through too much, and there are
alot of side effects with the sandostatin, and ordered it to be
stopped. Do you know any of the side effects? I don't think I did
at the time, come to think of it, I still don't! Well, good luck
with it. Ann, Dr. Lehman's nurse pract. told me that in Sept.-Nov.
when I was on the TPN, if they would have given me the sandostatin at
the same time, my pancreas would have dried out nicely, and I
probably wouldn't still be having so many problems. Just a thought.
Lots of Hugs, Linda
Hi Kimber,
Please let me know if that is what it is. It does sound like it.
The doctors also call it by another name, I don't know what, but if I
heard it I'd know, does that makes sense? How are you doing this
week? Thanks.
Lots of Hugs, Linda
Please Tammy! Don't ever be embarrassed about anything! I think we
all have been through these kind of things. I have diahhrea ALOT!
And after awhile I get that burning sensation, but it is usually when
the stool is like water, and the baby-poo yellow colored. I haven't
really ever ask why, I guess because it happens so often?!?!?! If
anyone has a reason, I'm interested also! Thanks all my smart
friends!
Lots of Hugs, Linda
Both CCF and UH of Cleveland have excellenct neurologists. Dr. R.S
Burns is not at UH of Cleveland. He is now the director of the PD
center at S.I.U. in Illinois.
LIST
Dr. B. Maddox -- University Hospitals
Dr. D. Riley at U.H. of Cleveland
Dr. Montgomery CCF
Dr. Sweeney- CCF
Dr. Ahmed- new
Autonomic testing
Fouad -CCF
Chelimsky- UH
sincerely,
n. m.
Might help to speak with Dr. Montgomery or Dr. Reznia (sp?)or the
physician being seen for the information about DBS.
http://www.clevelandclinic.org/neurosurgery/2ndlevel/index.asp?link=clinicalprog\
rams/functional
Sincerely,
nancy mullen
Greetings Barb and Vera!
You wondered:
Yes. But the pattern and quantity changed. I get very hot when I don't
seem to sweat too cool down (makes sense, doesn't it?). But when I do sweat
profusely it is no longer as much on my trunk. I used to SOAK my T-shirts.
But now sweat POURS off my face and head. Unfortunately, it's not enough
surface area to help cool my body (at least I think that is the cause).
Anyway, I also heard several people talking about no longer sweating, and I
also wondered. Sorry for Nancy and Fred and others that seem to have the
same prob