Wiki articles

Ann,
I'm so sorry to hear about your mom. I think it's a wonderful tribute that
you're exploring the donation route in her name.
Take care of yourself,
Rose

Wow! Thanks for the warm welcome and thank you so much
for all the great information, John and everyone else.
I really don't know where we are on this whole thing.
He meets with the neurologist at Mayo late this
afternoon to find out the results of all his tests and
to get a final diagnosis. My sisters and I are beyond
worried, but trying to stay positive. My dad has
always been a very strong, active and independent
person, so it's really hard to see him like this.
I will let you all know what we find out later today.
Thanks again.
Melanie Bruner in OK

Dear Ann,

I'm so sorry for your loss.

Donations for Multiple System Atrophy or Shy-Drager syndrome
research can be sent to:

Vanderbilt Shy-Drager Research Fund
Vanderbilt University Medical Center
AA-3228 Medical Center North
Nashville, TN 37232-2195

Hugs,
Pam

hey john,
thank you for your insightful and helpful answers. I guess chocolate can
cure lots of problems, unless you are a teenage girl about to go to the
prom. Then it has the opposite effect.
As for thyroid...I think problems with those things are the cause of darn
near every health problem people have. Maybe Dubya has a thyroid problem.
I'm starting to get a Dubya problem which occurs immediately after reading
the morning paper.
In reading the listings daily, I can always count on you to give me a
chuckle. you did it again. Thanks!
Jane

Click here: View Message

Ann,
I am so sorry to hear about your mom. I know her loss will be
difficult for you, but that you will take comfort that she is at
peace.
Rob and I have started a family foundation to help fund SDS/MSA
research. Unless you have a significant amount of money to put
toward this, it is expensive and you will burn up too much money on
administrative stuff. As far as I know, the SDS/MSA Support Group
does not yet have it's official not-for-profit status. (Don Summers,
please correct me if I am wrong.) Vanderbilt will accept donations
for SDS/MSA research, as will NORD (National Organization for Rare
Diseases www.rarediseases.org)
Thank you for thinking of the rest of the people with SDS/MSA at this
difficult time for you and your family.
Carol & Rob

Barbara,
If this is Ken's time, I hope the end comes quickly and without pain
or agitation. He has been very sick for a long time, and you have
both been very brave.
Our thoughts and prayers are with you both.
Carol & Rob

what is a foot drop? n spires

Hi, welcome to the group. Sorry I can't answer some of your questions. My husband has MSA, he doesn't sweat at all. We were also diagnosed at Mayo Clinic in Jax. Fla. MSA effects everyone differently. I have learned that some pt.s progress faster than others. The doctors tell us that their is no cure, only to treat the symptoms.

YOu are in a good group. I have learned a lot from everyone here. Some have had MSA for a long time. All the research paints a pretty grim picture but I have learned that life expectancy is a lot longer than what we have read.

Take care Kathy

dear fellow msa members,
My mom passed away last thursday after being ill
for 4 years. she was on a respirator and fever shot up to 105. She was very
ill at the end and now we
believe she has found peace. does anyone know a
foundation or group for msa to donate money . I
was thinking about possibly starting my own in my
moms name. if anyone has any information on any
of this please e-mail me back asap. thanks
sincerely,
ann from NY

Hi Rose,

Thanks for your reply. Why I think Dave aspirated is because he was sitting at the table eating, I went outside to the utility to do laundry, when I came back in he was asleep. I couldn't have been out over ten minutes. When I woke him I noticed food in his mouth and I thought he got it all out. After a few minutes, he started coughing and continued to do so for a few minutes. I made sure there was no more food in his mouth.

I guess my biggest trouble is that I am so afraid of infections and I try every thing I know to keep him well.

I do keep a watch on his temp and it's been his norm.

Thanks, Kathy T

Annette,

Sorry my reply took so long, I had computer problems last night.

About baclofen, I will give you a couple quotes from Clinic Pharmacology 2000.

"Baclofen is a muscle relaxant used to relieve spasticity, and improve mobility....."

"Baclofen works at the level of the spinal cord to block polysynaptic afferent (sensory nerves) pathways...."

...baclofen rapidly and almost completely absorbed. Peak blood levels are achieved in 2-3 hours.

Protein binding of Baclofen is low...(not likely to stay in the body long.

It may take days of treatment before you see the full effects of baclofen.

One should not stop taking bacloven all at once because of unwanted side effects,

"most patients are maintained satisfactorily in the range of 300-800 ug daily".

As you can see, your doctor needs to reread his information on bacloven.

I hope this helps you have a better understanding about the use of bacloven, If you need more information, I will be glad to provide it.

God Bless,

Jim Stark

Hi! I am new to this group. My father was diagnosed with PD a year
and a half ago. The disease is progressing rapidly, and now the Drs.
think he may have an MSA, possibly SD. He is currently at Mayo clinic
having multiple tests run. Some of his recent symptoms include
cervical dystonia, a slight drop (10 points) in his standing BP and
some speech difficulties (he speaks with a thick tongue). He doesn't
think his medication has been controlling his PD symptoms, but then,
he doesn't take it as directed...one hour before eating. His sweat
test yesterday revealed that he sweats everywhere but from his knees
to his ankles. Is this significant?
My question is this. Are these symptoms that any of you have had? I
thought that the drop in BP was much greater for someone with SD. I
know that the cervical dystonia isn't common in someone with PD, but
is a more common to MSAs. Is it a symptom of SD?
Also, if he is diagnosed with SD or some other MSA, what can we
expect in terms of where he will go from here? I gather that there is
no treatment. Is there anything that helps people with this tragic
disease? How rapidly does it progress? Is it different for everyone?
I know I have asked too many questions. I will appreciate any
information anyone can give me. Thanks!

Hi Ann,

We used the condom caths in the hospital. Mainly we used them for skin integrity. The main thing to watch for is to make sure that the strip that wraps around the condom is not to tight. What problems are you having with the cath? Maybe I can help.

Take care, Kathy

Barbara,

Our prayers are with you. I know this is very hard for you. He is very fortunate to have you and for his wishes to be at home granted. Take care.

Kathy and Dave

Barbara, I have followed you and Ken on the Parkinson's List and on this one. And I have always admired your and Ken's strength. Again, I find myself admiring your strength now. This must be so difficult for everyone for different reasons.

I hope he is comfortable throughout -- it seems as though you and Hospice and doing all that you can to meet that need. Closing down is, I believe, truly the best way to leave the world. But not with this damn disease. I am sorry for everything that you and Ken have had to go through and for what you must both face now. I will be keeping you both in my thoughts and wait with you, Debbie

Dear Friends:
I am writing this to let all of you who have become so close to us
that Ken is closing down. As you know, Hospice has been visiting us for three
months now, and he has pretty much been holding his own. Yesterday, he
developed a fever of over 100 degrees and his normal temperature has always
been 95. Since we had decided not to treat anything more aggressively, we are
just keeping him comfortable with the help of Hospice. He is taking very few
fluids and no solid food and sleeping most of the time. It is his desire to
die at home, and we are honoring it. He has bounced back so many times, it is
hard to believe it won't happen again, but each time, his quality of life has
been less. He does not want a feeding tube or any other resuscitation.
Hospice has brought us oxygen if he becomes uncomfortable along with some
calming medicines if we need them. We are just waiting now.
Love, Barbara Smith

I have been trying to find the name and e-mail address of the man that
wrote back several weeks ago or maybe longer. He stated that he had been
using the condom catheter for about a year. I deleted the message and I
don't know how to retrieve it, I am so green on the computer.
At that time Al was not using it, he now is.
Each night his output is 2000cc , last night it was 2300cc.
We are so new that this we need some help, please.
Ann from Soddy,TN e-mail

Barb,
I like your hugging koalas.
Take care, Bill and Charlotte

CONNIE IS IN HER LAST STAGES OF THIS DISEASE. SHE HAS IT ALMOST 10
YRS. IF NOT MORE.
SHE HAS BEEN LOCKED INSIDE HER BODY FOR THE PAST 2.
HER 25 YR OLD SON ROBERT & OTHER FAMILY MEMBERS HAVE BEEN CARING FOR
HER AT HOME.
SHE IS NOT DOING WELL THESE DAYS, THE SORES IN HER MOUTH ARE GIVING
HER THE MOST TROUBLE.
HER JAW IS REALLY LOCKED, THEY ARE LOOING INTO BOTOX INJECTIONS.
CONNIE HAS SUCH A WILL TO LIVE.
BEFORE ALL OF THIS SHE WAS ALWAYS THE LIFE OF THE PARTY.
THIS HAS TAKEN A GREAT TOLL ON HER FAMILY.
IF SOMEONE OUT THERE THAT CAN EMAIL ROBERT AT CONSCIENCE3@... FOR
SOME SUPPORT IT WOULD BE APPRCIATED.
HE IS GOING A TERRIBLE TIME.
THANK YOU,
PAULA

I happens to others too. I just got home from having the correct lens put in my new glasses. It was a real bummer for a few days. I too thought it was my eyes.

Replaced at their cost.

Somebody cannot read. Maybe they need to have their eyes checked.

Barb [INLINE] Hugs to ya

I didn't get hives but did notice I was much more likely to get burned and
quicker. Be careful in that intense sun, so you can thoroughly enjoy your
vacation.
Rose

From personal experience, Bactrim works BUT the sun can cause extreme problems.
I was out in the sun for about 30 minutes and had an extreme allergic reaction -
hives all over where the sun hit me. It does not hit everyone, but don't risk
the sun. Tell the doctor and see if he will try a different med.
Take care, Bill and Charlotte

Greetings Bill!
Got a funny story to help remind people to always check with their doctors,
when in doubt.
My optometrist has seen me for several years. So, he's noted a sharp
decline in my vision (from 20/30 to 20/50+). Anyway, last year he
prescribed reading glasses. They just didn't seem to work, and I basically
gave up using them.
Of course, I figured it was just problems with focusing. Sigh! Yet
*another* symptom.
Well, turns out the wrong prescription was filled. He apologized profusely.
He's replacing them at his cost. But just goes to show ... ask, don't
assume. Afterall, you know what happens when we assume! It makes an a**
out of u and me.
Regards,
=jbf=
John B. Fisher

Greetings Jane!
You wondered:
Hmmm... That sound exactly like the exuse my wife uses before it's time for
some chocolate! ;-)
Thyroid problems can cause loss of pigmentation.
Sorry, I just couldn't pass up that opportunity.
Regards,
=jbf=
John B. Fisher

Hi Everyone,
I have a few questions for you, if you don't mind. Have any of you noticed
that the irises of your eyes have gotten lighter? If so, do your eyes have
trouble dilating? Do they let in too much light? Not enough?
Have any of you found that your skin is losing pigmentation? In freckles,
or all over?
In MSA do you know if the substanyia nigra loses pigmentation?
Are there instances of Africans or African Americans getting MSA? Other
eop0le of color?
Thanks for any help you can give!
Jane Baldwin

How stressful this must be for you. But you are doing the right thing. He
needs to see his neurologist.
Regards,
=jbf=
John B. Fisher

My mother Joyce (71, died 11/00) had a foot drop. The foot was often numb,
too. It was on the side most affected by the disease. Debbie

Mary,
No wrist drop or foot curing; bending forward or to the side; and the neck
bending are all problems in MSA. Exercise can help if the patient will do the
exercises every day. These are "range of motion" exercises to keep movement -
much like the stretching exercises that athletes do before they go into
competition and not violent exercise like you see on TV.
While you can hold the straw in your lips and squeeze it off quickly, I feel the
sip from a class is better also. Charlotte insists on using a straw however.
Try thickening the liquid with Thick-it or another thickener.
Take care, Bill and Charlotte
=========================

Hi!
I don't usually write. I'm more of a lurker but I don't recall
seing this problem before. My husband has had MSA for about 7 years.
Recently he has started to have seizures. They don't last long but he
turns red in the face, his eyes tend to roll back, his foot and hand are
jerking. When he comes out of this he is confused and I can't
understand his speech at all. I have an appointment with the
Neurologist next week but I just wondered if anyone else has experienced
this. It sure scared me to death and I wasn't sure exactly what to do.
Thanks for any infor anyone can give me.
Bev Britnell

Greetings Mary!
You wondered:
Would some sort of 'sipping top' help? Though in a nursing home thickeners
might be an easier solution.
Regards,
=jbf=
John B. Fisher

Well I awoke yesterday with a UTI, and back pain. The doctor started
me on Bactrim, has everyone had success with this drug? We are going
to Cancun tomorrow and I noticed it says to stay out of the sunlight
on the bottle!

Hey guys, I just back back on line. The worm virus got me a week
ago! Barb got a better deal than I did. It cost me $292.50, but I
also changed my antivirus from McAfee to Norton 2001 Security.
Hopeful I never catch a virus again!. Dawn my be using my computer
since hers is still down.
Celeste & Dawn

My mom seems to swallow a lot of air, particularly when drinking thin
liquids like juice or water. And then has to work really hard to burp it
out. It's worse w/ a straw. Speech therapist one time told me that straws
deliver liquids too far back into the mouth and decrease the amount of time
before they reach your "swallower" (my word not hers!) Anyway straws are
often a no-no for people w/ swallowing problems. But the flip side of that
is that open drinks invite spills and aren't very sanitary at the nursing
home. So what to do? Got a catalog of assist devices from PSP group which
has nutritional items in it as well as mobility items. From a company
called AliMed Inc. www.easierliving.com also www.dysphagiatherapy.com
Mom has developed wrist drop in her left hand, just as she had the cast
removed from her right wrist. This is really complicating her ability to
provide any self care or feed herself. But it has encouraged her to use
that stiff right hand. Everything is such a trade off. I remember someone
else mentioning wrist drop - is that (or foot drop) a problem others have
from disease process or is this an isolated event?

The neurologist put Al on Milk of Magnesia every other day and that has
helped.
He said that is what they use on patients with spinal injury.
Ann from Soddy,TN

Kathy,
I doubt they'd put him on a preventative antibiotic. I bet your doctor
would want to know why you think he aspirated (was he coughing? on what?)
and if he's running a temperature (have you been keeping track of his
"normal" temp. so you could compare?). People with MSA tend to have a lower
"normal" temp. so a temp. of 96 or 97 may actually be a fever for them. Is
he acting lethargic or sound congested in his lungs now? These could be
signs that he did aspirate, but I agree with Debbie that your doctor would
probably want a chest x-ray for diagnosis.
Rose

might as well put the information over the e mail every body is looking for
it. becky

Thanks, Jean!
Elaine,
Last night I sent a two part message about VA benefits. The second part
got there before the first part because I made an error in the address.
Anyway, if you scroll down on the forwarded 1st message (which got there
after the 2nd one) and then read the one that says "continued" it will make
sense!
Jean (PHX)
To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com

Gail,
Reflux is common with MSA.
Is Paul on any reflux meds.? Maybe he just needs something at night prior
to going to bed. Pepcid, Zantac, Prevacid, Prilosec, and Axid are some
reflux meds. that I know of.
Maybe you already know this, but does he avoid items with caffeine
(including coffee, tea, sodas, chocolate), citrus, and tomato products?---or
at least have them early in the day when he won't be lying down.
Also, avoiding peppermint/spearmint, alcohol, smoke, tight clothing, and not
eating or drinking at least 2-3 hrs. prior to bedtime may help.
Maybe it's time to see a gastroenterologist to rule out other problems. Has
he ever had a swallowing study done in x-ray? ---maybe that's needed too.
I hope you find something to make him more comfortable.
Rose

Hi Kaye,

Thanks for your reply. I am very sorry you lost your husband. I know it has been hard for you. Dave is 68 years old. Has a history of two heart attacks, diabetes and now MSA.

He is a good man, good husband and father to our kids. I wish there was a cure for this disease.

Take care Kathy

I forgot, has he been seen by a speech therapist about swallowing problems?
If not, sounds like it's time. Ask your doctor for a written order for a
speech evaluation and treatment. You're right that prevention of aspiration
is definitely better than having to treat/deal with it. A speech therapist
can help with that.
Rose

Kathy, I think you need a chest x-ray to confirm AP. Debbie

hi, it's kaye.
i'm sure you will hear from others far more knowledgeable, but i don't believe a
preventive
anti-B is the norm....
altho i do recall reading about a gentleman who
was on a low-dose antiB....
but, with all i read about antiB's, don't we
all eventually build up an immunity to them?
sorry to add another question to your question.
i'll be interested in reading the replies to
your note...
fyi, my husband passed away july 2000 during the
night. i believe he may have aspirated on
something, but no autopsy was performed. a part
of me regrets this, but that poor man was so
miserable, so paralyzed from the disease, that at
the time of his death i wasn't thinking about
the 'exact' cause....the underlying cause was
the progressing MSA.
how old is dave, kathy?

Hi Tom,

My email address is ktrnus@.... Hope you are well. Let me know what to do to help start our Ga. group.
Take care Kathy T.

I think trazadone is a different type of drug. If my memory serves
me corredtly )and that is a big if!) trazadone is a mild
antidepressant which has the side effect of causing drowsiness, which
makes it useful as a sleep aid. Klonopin is a central nervous system
depressant, which is why it can make the symptoms of MSA worse for
some people, but also why it works to control REM behavior disorder,
which causes much disruption in sleep.
Carol & Rob

your story is my story ...right down to detrol. self cath every tree hours
sometimes go 5....use wipes and clean thoroughly first....uti was like flu,
motivated totake extra precaution to first clean and then use wipes
last.....havent had uti since

hi kathy email was down and im a little slow getting back about ga support
and drugs.your klonopin story is interesting i take trazadone and been in
a wheelchair for a year. take trazadone for restless legs and no sleep i
wonder if i would not freeze(legs) if I was off that????did anyone have a
similar response to trazodone?
while i am at it and since all will read CALLING ALL GA CAREGIVERS AND
PATIENTS ( talked to gail and she need not respond-i willl call) SEND ME
YOUR EMAIL ADDRESS AGAIN OR FOR FIRST TIME
COMPUTER WENT DOWN AND I LOST ALL

I was wondering if any of you have experience with
indigestion. Almost from the beginning of his MSA
(after dx of course) Paul has experienced trouble with
digestion. I have asked if it is related, but have
been told that it is reflux. I have had reflux, it
seems somewhat different. We have the bed elevated at
the head, and we attempt to eat early enough in the
evening that he can sleep. After eating, Paul will
try moving around, or standing for a while. He burps
repeatedly, and quite often for an hour or more. He
feels that if he can get all the air out, he will
sleep better. It doesn't seem to matter what he
eats-he even has trouble with water. Any thoughts?
=====
Gail
gsouthwick@...

Elissa,
My husband is catherized four times a day. Doctors in Nashville, Memphis,
and our home town all insist that the in/out catherization is much better
than the indwelling. They say there is much less risk of infection than
with the indwelling. This info probably doesn't really help you, but it
might be good to know that other doctors in other areas say the same as your
mother's doctor. We wash the cath tubes with soap and water and then
microwave for 30 seconds.
Everything about this illness is hard. My husband had problems controlling
the release of urine and also problems in emptying the bladder as well.
Prior to beginning the catherization, he would go to bathroom many times a
day with only a tinkle. Shortly afterward, he would need to go again.
We tried Detrol which is supposed to help control, but he got a major
impaction that required a week in hospital. So we are off of Detrol and do
the catherization.
I too have learned much from the people on the list. I see, now, that my
husband had many of the symptoms for several years prior to the actual
diagnosis, but no one tied them all together until 1998. Each symptom was
treated as a different problem.
Good luck to you.
Marilyn in TN
-

Welcome to the group, and I, too, am sorry that you have to be here. But,
you won't find a nicer, more well-informed, empathetic group anywhere. We
are a family, and do whatever we can to support each other.
My husband used to intermittent cath also, and never had an in-dwelling one.
Besides the importance of lots of fluids (preferably water) many are put on
Bactrim as a prophylactic measure. This worked wonders for Jim; he was on
it and self-cathing for about ten years. Seems the only time he'd have a
bladder infection was after he'd been in the hospital with an in-dwelling
cath!
Hugs,
Nan

Kathy,
I have heard that some people have a bad response to klonopin, but
never heard the details before. Sounds like you guy had a really
rough time! Rob takes 2 mg of klonopin every night, and without it
has real problems with REM behavior disorder (acting out violent
dreams). He has never had a bed reaction to it. Just goes to show
that every MSA patient is different.
Thanks for sharing your klonopin story.
Carol & Rob

hoped that it would be a good med to help with sleep. The first night
it really knocked him out, so much that I didn't sleep for worrying
about him. The next day, he had a hard time walking and his motor
skills were worse.The next night we decreased the dosage from 1mg to
0.5mg. The next day we had to use the wheel chair part of the day. I
talked with our family and we couldn't decide if his weakness was
from the med or MSA. I tried the med one more night and yesterday he
was in the wheelchair all day, he could hardly move his legs. I was
really worried about him and called the home health nurse. I really
felt that the med was what was wrong with him and didn't give him to
him last night. Today he is walking with his cane, we were able to
get out and go visit our daughter. He is back to his normal self. I
wonder if his neurological state makes him more sensitive to the
drug. I know that klonopin is used for movement disorders and I was
hoping it would improve his movement. I will never give it to him
again.
Explorer at <a
href="http://explorer.msn.com"

Elissa
It may be that your mom is not getting enough liquids. Liquids are difficult to
swallow for most MSA patients and they tend to stop drinking as much as they
need. My wife had this problem in 1998 and they placed a PEG (feeding tube)
directly into her stomach. She now gets most of her liquids through the tube as
well as most meds and some food supplement.
Have they done a swallowing study on her? That is where a speech therapist
watches as they have her drink and swallow (or chew and swallow), while they
videotape it by Xray.
Take care, Bill and Charlotte

I have a question maybe yall can help me with. Yesterday, when Dave was having such a bad day, I think he aspirated while eating. I am afraid of aspiration pneumonia. Do you think maybe he could be prescribed an antibiotic for prevention?

If any of you have any suggestions, I would be grateful

Kathy T.

Just noticed that someone was reluctant to give advice because they were new to
the list. Remember any advice we give is suggested advice and you should check
it with your doctor. To my knowledge there are no doctors on the list at this
time.
Some suggestions like more liquids are well known here and we can generally give
you backup data sites. Raising the head of the bed for people with orthostatic
hypotension is also well known here
But you should check any info you get on the internet!
Take care, Bill and Charlotte

Hi everyone,

I wanted to tell you about our experience with klonopin. We had hoped that it would be a good med to help with sleep. The first night it really knocked him out, so much that I didn't sleep for worrying about him. The next day, he had a hard time walking and his motor skills were worse.The next night we decreased the dosage from 1mg to 0.5mg. The next day we had to use the wheel chair part of the day. I talked with our family and we couldn't decide if his weakness was from the med or MSA. I tried the med one more night and yesterday he was in the wheelchair all day, he could hardly move his legs. I was really worried about him and called the home health nurse. I really felt that the med was what was wrong with him and didn't give him to him last night. Today he is walking with his cane, we were able to get out and go visit our daughter. He is back to his normal self. I wonder if his neurological state makes him more sensitive to the drug. I know that klonopin is used for
movement disorders and I was hoping it would improve his movement. I will never give it to him again.

I wanted to share this with you so that if any of you was prescribed this drug that you would be aware of it's side effects.

Take care, Kathy T.

Hi Elissa,

I joined this group a couple of months ago and have learned so much. A lot more than from doctors. Everyone is very helpful.
Ny husband has an indewelling foley cath. I think he's had it for about three years. His problem was, he wasn't emptying his bladder. If I am very careful and use sterile technique when changing it, he does pretty good and I guess out of three years, he has only been treated four times for UTI. This last year has been the worst for infection but his condition is worse. I learned from the group this week that two eight ounce glasses of cranberry juice a day decreases risk for infection. I am going to start him on it, as soon as I can make it to the store.

Take care and we are all here to help in any way we can. I am a little reluctant to offer advice at times because I am so new to this group but I will be here for you anytime.

Kathy Thompson

My husband use to have urinary infections. He was fortunate in the fact
that he could take cranberry capsules and keep them at a minimum.
Have you talked to your urologist about those?
Of course that made more urine. Be sure you get lots of liquid down her
too. If the bladder is not completely emptied the infections get a head
start.
Welcome to the list, tho I am sorry you have to be here. I am Barbara.
My husband, Ralph, was released from all of his pain and misery on July
27, 2000. He was ill for about 10 years but was dx'd in '95.
God bless you as you care for your mama.
Barbara In Arlington, Texas where the sun has been out all day.

Mrs. Lonefold's dishwasher quit working, so she called a Repairman. He
couldn't accommodate her with an evening appointment, and, since she
had to go to work the next day, she told him: "I'll leave the key under the
mat. Fix the dishwasher, leave the bill on the counter, and I'll mail you
the check. By the way, don't worry about my Rottweiler. He won't bother you.
But, whatever you do, do not under any circumstances talk to my parrot!"
When the repairman arrived at Mrs. Lonefold's apartment the next day, he
discovered the biggest and meanest looking Rottweiler he had ever seen. But,
just like she had said, the dog just lay there on the carpet, watching the
repairman go about his business. However, the whole time he was there he
parrot drove him nuts with his incessant cursing, yelling, and name-calling.
Finally the repairman couldn't contain himself any longer and yells:
"SHUTUP, YOU STUPID UGLY BIRD!"
To which the parrot replies: "Sic em, Brutus!"

I found your group last summer when I was searching the internet for
info about Parkinsons medications. My mother Martha was diagnosed
with Parkinsons 2 1/2 years ago and I moved her here to Arizona in
November 1998 after she had broken her hip. Last week she was
diagnosed with MSA/Shy-Drager after a two month long siege of
frequent fainting and remaining unconsious for 20-30 minutes. I have
found so much wonderful information about proamatine and florinef as
well as many of the other issues we have been struggling with such as
the swallowing and speech exercises. My mother's worst problem is
urinary infections and I feel we are reaching a serious crisis. She
had recurrent infections for the last two years, but now they are
almost constant. She is lucky to have three or four days without an
infection after finishing an antibiotic. Of course the infections
also make everything else much worse. We straight-catheterize her
three times a day since she seldom can control urination at all. I
understand that catherizing in itself increases the likelihood of an
infection but the urologist insists it is better than an indwelling
catheter. Now she has taken so many of the antibiotics that hardly
any of them work. She recently had a horrible reaction to Macrobid
and can't take that anymore because it caused peripheral neuropathy.
I'm wondering if maybe other women have had favorable experiences
with an indwelling catheter. Thanks in advance--I do appreciate this
forum and am so grateful to have found you!
Elissa

Thank you everyone for coming to the Central Indiana
Support Group meeting and making the dream a success!
Gary Huddleston
Note: forwarded message attached.

I believe Anne is having her angiogram around now. Debbie

A few weeks back a man on the list that has SDS and is using the condom
catheter at night wrote to the list.
I would very much like to ask him some questions, since he has
experience. Al was put on them last Friday.
If you don't mind I would love to write to you personally.
My e-mail address is
Ann from Soddy, TN

Lita and family. You have my deepest sympathy. We are praying for all of
you.

Hi Bill,

Thanks for the information. Tell Charlotte Dave and I said hello.

thanks, Kathy

I am so sorry to hear about Ralph. I am glad that the family was there to
send him off. This disease takes away a lot of things, but Ralph had the
final say. I am thinking of all of you, Debbie
--

So sorry to hear of your loss, our prayers are with you and the family at
this time..
He is now in the hands of God and he will welcome him with open arms.
We love you ,
Ann from Soddy, TN

Vera,
As far as I know the hospice is great. They come out more often and offer
way more help than the home health aids. Mom said that she was a little
overwhelmed the first day. Everything happened so fast. I just told her that
she was used to medicare taking their own sweet time :-)
I think it was a good thing to do. Dad is soooo advanced these days.
I emailed Dr Jankovic and he recommended a CPAP machine. We don't know if we
will do it or not. Dad hates wearing the masks. If his insides are really
shutting down, I don't know how much it (or anything besides a respirator)
could really help.
I'll keep you posted.
Jennifer

thoughts and prayers are with you and your family!!
Blanche caregiver of Ralph

Elaine,
Last night I sent a two part message about VA benefits. The second part
got there before the first part because I made an error in the address.
Anyway, if you scroll down on the forwarded 1st message (which got there
after the 2nd one) and then read the one that says "continued" it will make
sense!
Jean (PHX)

Hi all;
Just thought I'd let you know how much I appreciate the link to Ames Walker
for mothers compression hose. I am so amazed at the difference in the prices
and the huge savings at that site. I just ordered a dozen pair of hose for
mother, because the prices will be going up on the 22 of January. She likes
the sheer 20-30mmHg with the reinforced back side. If anyone is interested
they only cost $10.95 each until sold out or on the 22nd. Mother was
charged $140 for a comparable pair of Jobst. here is the link.
http://www.supporthosiery.com/prices2030sheer.htm
take care, Mary Ann-

Hi: Actually Jan Gordon gave the pager to the Millmans and then they gave
it to us. However, I have seen them in Penneys disability catalog for
$54.99 and they are called "Personal Pager" I can put it on the porch while
working outside and if Jack wants me he can push the necklass button and Ii
will set the pager off and I hear it and can come in. I can take it to
another room while sleeping or working and it does the same. It is great to
have. Hugs, Judy

In a message dated 01/19/2001 8:49:59 PM US Mountain Standard Time, Suicoaz
writes:
<< d

Sorry, I sent part 2 of the message before part 1. I am not sure how but it
came back. I will try again. Jean

These figures are for 2000 and it is noted that they can change each year
beginning January 1
Prescription Co-pay thresholds
+ Single Veteran - household income not more than $8,989.
+ Veteran w/one dependent - household income not more than $11,773
+ Add $ 1,532 for each addition dependent.
Prescription co-pay thresholds can change yearly beginning January 1st
Category C Thresholds for 2000 are:
+ Single veteran
+ Household income more than $22,887.
+ Income plus net worth more than $50,000.
+ Add $ 1,535 to the income level for each additional dependent.
Co-Pay Charges
+ Prescriptions $ 2.00 for each 30 days supply or less
+ Outpatient visit - $50.80 per visit
+ Inpatient Hospitalization/Nursing Home Care - $776 per admission (within 90
days)
+ Inpatient daily charges:
+ Hospital $10 per day
+ Nursing Home $ 5 per day
How is your income assessed? Your total income and net worth under the
eligibility assessment include:
Social Security, Civil Service Retirement, RR Retirement, Military
Retirement, Unemployment Insureance, Any Other Retirement, Total Wages from
ALL employers, Interest and Dividends, Workers' comp, Black Lung Benefits,
Spouse's income, Market Value of Stocks, Bonds, Notes, IRAs, Bank Deposits,
Savings Accounts, Cash, etc.
Your primary residence and personal property are excluded.
Where to find more information: www.va.gov/ and 1-800-US1-VETS
Health Benefits 1-800-929-8387
I hope this helps you to see if you qualify for services. My dad fits in
Category A and has been going to the VA her for over 20 years although he
does not use them for everything. God bless all of you who have served our
country.
Jean Phoenix

Hi all,
The Ataxia Support Group has a meeting scheduled for NIH. Anyone in the
Washington, DC area is invited. See the information below.
Take care Bill and Charlotte

Mary. Ralph had the cataract surgery on his right eye. Did very well.
Barb in Arlington

Hi Vera,
Told you we were going to see a new Opthamologist for Warren, well yesterday
we did and he found a very well developed cataract which is keeping all the
light from going through the"lens". We set up an operation for Feb 20th,
he's booked until then, and are excited about Warren getting his sight back.
You see he only has vision in that eye as he was shot with a BB gun whenhe
was about 8 years old. So he was becoming literally blind with the
cataract. Our other Opthamologist never mentioned a cataract so we assumed
it was from MSA/SDS.
We were very pleased with this young man, and by the way I gave him a copy
of the description of SDS and he sat and read it in our presence. He also
thanked me for bringing it as he had never heard of it before. I said I
didn't want to be presumptious but so many medical people haven't heard of
it so I just naturaally bring a copy along.
Hope this finds everything well with you and Fred better.
Love, Mary

Sylvia, Anne is offlist indefinitely. She needs to spend more time with her family after discovering that her eating problems were not MSA related but due to a breakdown (closing) of some intestinal and bowel bypasses.

I heard from her recently and learned that she will be having an angiogram on Monday. I am not a religious person, but know there are plenty on the list. So I ask that you prayer for her. All the good wishes going her way HAS to help. Debbie

-----

Hello everyone,
Has anyone used the fairly new antidepressant, Remeron (miritazapine) ?
My husband (MSA) had a very awful reaction, which fast-forwarded a lot
of MSA symptoms. He's off it now, but I'd like to know other people's
experiences.
Thanks,
Barbara in Illinois

Kathy,

The reason for MSA patients not wearing bifocals is that reaction time is down in MSA patients. Wearing bifocals requires rapid adjustment between two different lenses. MSA patients usually do better if they wear either reading or distance glasses so they are not changing constantly. MSA patients also do not react well to sudden changes in light levels and often do better with sunglasses in high light levels.

Take care, Bill and Charlotte
=====================================

Lita,

I don't mean to intrude on your emails to your family, but I just wanted to let you know how fortunate your husband is to have you for a caregiver. I know it has to be hard for you but all of us are here for you and will help you in anyway we can. Please take care of yourself. You will be in my prayers.

Kathy T.

len, what's your phone number? luv, di

My mother had Sh-Drager and I want to mention 2 items that may help
others:
1. We have had relatively good results controlling my mother's
incontinence using Ditropan, a prescription medication.
Her neurologist advised that this had fewer side-effects for MSA
patients than what she was taking, Detrol.
Indeed it seems that Ditropan DOES have fewer side-effects and also
is
MORE effective in controlling urinary incontinence. See your doctor.
2. Also, when my mother was depressed, her family doctor correctly
refused to prescribe anti-depressants unless she expressed to HIM
that
she was depressed. In other words, he wouldn't take my word for it.
My mother was reluctant to admit to anyone but me that she was
depressed and acted like there was some shame in being depressed.
Here's how I got her to ask for help: I reminded her that she
already took Fosamx and later Evista because her body had stopped
producing the chemicals necessary to keep her bones strong. She
understood that as we age, the body stops producing certain chemicals
it needs.
I then told her that some chemicals control depression and that it
was
possible that her depression was similarly based in the shortage of
some chemicals. I also told her that Zoloft is very fast acting but
also wears off quickl; should it not agree with her we could stop it
immediately.
That convinced her to try it and it seems to have helped some.
Finally, I want to offer my condolences to all our members who have
lost dogs. But I want to add that others should consider getting a
dog for themselves or a loved one. They are a great consolation and
can help relieve depression. Whenever I bring my dog to see my
mothers, she becomes another person.
There are lots of terrific dogs in shelters an also lots of dog
rescure sites on the internet. For example, we like Australian
Shepherds and after losing a dog to cancer and taking some recovery
time, we found an Australian Shepherd rescue site on the web. By
adopting a 2 year old we were able to bypass the cute but sometimes
difficult puppy stage, get a dog already house broken with a lovely
disposition and some training, and also do some good. I hope you
will
consider if this would work in your lives.
Take care.
With that

Here is an interesting article on 20 changes in our way of living by the year
2020 which includes some insights on medical changes as well.
http://www.discover.com/oct_00/featobsolete.html
It also led to this site for anyone interested in ALL forms of gene therapy:
http://www.med.upenn.edu/ihgt/index.html
Take care, Bill and Charlotte Werre

Hi Judy:
Not only was the saleman we got the van from informed on the rebate,
he also was asking questions about Freds illness . Wanted to know all
about it. You don't run into saleman like him these day. Like I said
a really nice person.
Hugs Vera

Hi Jennifer:
How is the Hospice working out for your father? If it is anything
like the ones that helped Freds Grandmother, he should be doing well.
Vera

Jeanie:
When I read your letter to Gert, I can see me in it and I guess most
of us on this forum can see ourself in it. The road for most of us
has been the same. Many months if not years trying to fine out what
the illness is. I know it took us over a year before we found out
what Fred had and then not to know anyone else that had it. I didn't
fine anyone that had it, till I found this group three years after
Fred was DX. I know it's hard not to know what will happen day to
day, but it's nice to know that we can get some answers from this
group and not hear "We just don't know".
Hope I can be of help
Vera

I know Rose I'm way behind on reading the posting. Gee! by now you
may be due anytime (just kidding) but wanted you to know how very
happy I am about the twin girl's. Lucky you, well until their teens,
then you can talk to me again. Your'll due just fine with the bed
rest, just don;t over due. My girl friend has twin girls now 15(I
tolded her to keep them little, but she wouldn't listen, now she
tells me she should of)and your right that is what you need with
twins lots of rest. So take care.
Always Vera

Hi Gert:
I'm glad to meet you and welcome to the group. They have away of
making you feel at home here. Always there with a helping hand if you
need one. Which most of the time I do.
I hope that you will tell your friends about your husband. It will
help them to understand and maybe they will offer to help in someway.
just a thought
Vera

Hi Bill:
Would of loved the rebate on the lift for the Van, but it did have a
title.So I'm out of luck. Always one step and a dollar short.
Vera

Elaine:
Sounds as if you have a real sweetheart there in your husband.
It's always nice to hear thank you, even after all the years. I would
alway tell Fred thank you for the dinner out or the show, what have
you etc. Nothing should ever be taken for granted. I know we don't
mind doing it, but it's nice to hear it anyway.
You've got a Gem.
Vera

John:
Sorry John that I didn't get back to you before this, but just
haven't been able to get on to read much lately and when I fine where
I left off, I have someone wanting me for something. Story of my
life.
I'm really glad to see that you speak up for yourself, I've never
been one to do that. I'm alway tolded by my friends that I'm to nice.
Maybe they are right.
If I could do it all over again when Fred dropped the sliverware and
the people made fun of him. I would ask them why they didn't help
pick it up ? They could of done that instead of just watching.
Thanks for the reading thoughts,it's alway a pleasure to read what
you have to say.
Vera

Carol:
I will talk to Freds doctor about the Miralax. Don't know why they
wont write me an RX for anything for him, other then just over the
counter stuff, but so far they won't.Right now I'm trying the
Ducolax, at least I can say I tried it when we see the doctor again.
If this doesn't work , maybe he will go with what you tolded me
about.
Thanks
Vera

Sally:
Suprise it's me!
Goes to show you how far back I am on the posting, just came across
the picture that you put in here in Dec. Gee KS is nothing like I
picture it, Isn't it the State that is suppose to be flat? Sure
doesn't look that way to me. Really pretty.
Hugs Vera

Sue;
The old fashion way of getting rid of leg cramps is to drink lemon juice
with water. You might want to wear compression hose during the day. I just
ordered some for my mother,(doctor recommended) from Ames Walker. They have
a great sell on now until the 22 of Jan when prices will go up. My mother
has SDS and needs the 20-30mmHg, I got some for myself, 8-15mmHg, just to
make my legs less tired.
http://www.supporthosiery.com/prices2030sheer.htm
Mary Ann-
Ps. Drinking lots of water is the first thing to do. You can't go wrong
there.

Caroline,
While her condition might improve with the medicines, it might not either. It
is impossible to predict with MSA. The exercises do usually help. You can tell
her that the doctor says the meds will help and many of us tell you that the
exercises help. But as you say, if she doesn't want to help, it will not work.
You can not do the exercises or take the pills for her.
On the eyes closing, some people have tried botox shots for that. A muscle
relaxer or anti-spasm med may help also.
Don't let it put you in the hospital. Take care of yourself as well.
Take care, Bill and Charlotte

Doug and Mary,
I too have a problem with some of the email replies not having enough info to
decipher what the email is about. :o) But I too often forget to delete the
extraneous part of the message. Sorry, I get wrapped up in what I have to say,
then forget to delete - senility I guess :o)
The digest messages are the worst I agree. Part of that is that it is so
inconvenient to reply to the digest messages (I get the digest from another
group). P.S. if you ever reply to a message on the egroups website - it may
take 15 minutes for it to appear on the website. Don't do as I did and send the
same message again :o)
Take care, Bill and Charlotte

Just wanted to say hello, and let you all know how mum is doing ---
but firstly I would like to apologise to all the kind people who e-
mailed me and to whom I haven't replied.
Unfortunately I ended up in hospital over Christmas and haven't had
chance to catch up with everything yet.
Mum, has a new problem ---- her eyes spontaneously shut and she
physically can't open them for a time - she said it feels like her
eyes have gone up into her head - has anyone else experienced this?
I also have a real dilemma with mum at the moment -- she still
refuses to take any medication other than sinemet - the problem is
she is very depressed and cries daily. It hurts me to see her so
unhappy --- I keep trying to persuade her to take her anti
depressants, water tabs, etc. but she says she just doesn't want to
and she won't. She has also stopped many of her exercises and I am so
worried.
The last thing I want if for her to feel I am on at her all the time -
- should I leave her to do what she wants - ultimately - it is her
illness and I respect it is her choice, or do I keep trying to
persuade her to take them. (I get the impression she thinks I am
nagging her).
Any advice here would be really appreciated - as my father doesn't
believe in the medication I am not sure what to do. (I have spoken to
her GP - who says her quality of life would improve if she took the
other drugs and I should persevere.)
I hope you are all doing well in this new year and promise to sort
out my emails and replies when I am feeling a little better.
Thanks once again for all your support
Caroline

This is the update from yesterday from Lita and Ralph; I'll try to forward
these from time to time to keep you updated. Thanks for all the thoughts
and prayers we are receiving from all of you. Thanks to Bill also, for
being close enough to call Lita once in awhile; I know she appreciates it.
Smiles and hugs, Diane

Nancy:
No, I don't care about anything except keeping Ken's BP high enough
that he doesn't pass out. The last time we took him off Pro Amatine for a few
days to see if we could keep his BP from going to 200/100 during the day, he
passed out for 15 minutes and the paramedics had to take him to the hospital!
We just don't worry about any other possible side effects of Pro Amatine so
long as it keeps him conscious.
love, Barbara Smith

JIm,
Don't apologize for your long emails......there is always something in them
that one can pick up on. Viewers choice as to whether to read through or
delete.
Barb Pond in VA

Good luck with the treatment John, make sure you let us know how it all went when your get back.

Take care

Fordy's Michelle in Oz

Nancy, when my husband, Ralph, was in hospital bed I put an egg crate foam pad under him, between sheet and mattress. The plastic mattress was too hot for him too.

I always had an extra clean one for the times when there were accidents.

I bought mine at Walmart or KMart. Not very expensive. They can be difficult to launder tho.

I hung Ralph's out on a line on the patio or put it on top of our outdoor grill. They have to drip for a long time. Very heavy when wet too.

There are elastic sheet holders that go on the corners of the sheets. They will help hold the sheets taught. Even tho I used the fitted twin sheets they had a tendency to stretch and get loose. I also had a pair of men's suspenders that I stretched across on the under side of the mattress to hold the sheet. It takes some muscle so you will need help.

The wedge did not work because he had a tendency to roll off of it because he could only sleep soundly on his right side. That was also the only side of the bed that he could get into. Just another fluke in the going to bed routine.

Is your bed adjustable so the head can come up? If you get to a sitting position before trying to get out that might help. Sit up and then turn around to get up.

I do not know how mobile you are. Ralph had great difficulty getting out of the bed. I had the short rails put on so he did not have to go over the long rails when they were down. The shorter rails will also assist in getting to that sitting position. We also had a trapeze bar that was connected to the head of the bed. They are great if you have the arm strength.

I wish you well in getting this problem solved.

Barb, in a very wet Arlington, but not freezing.

[INLINE] Hugs to ya.

Before my mother Joyce (71) died in November, I, too, was wondering how she
could spend her time. She was either in the hospital bed, the wheelchair, or
a seat at a table. She and my dad were going out less and less. Because
everything took so long to do there didn't need to be a lot of things --
just fun or interesting ones.
One home health aide got her involved in making tacos one afternoon. She
lined up the ingredients on the table and my mom was able to sprinkle the
different items into the shells. Also, I was planning to visit my parents
with a load of batter of the cookies she made every Christmas. Each cookie
has to be molded into a crescent (a real pain, believe me, as I've taken
over the tradition). I figured she could use her good hand to mold them --
it would have taken forever, but who cares? Unfortunately, she died before I
got there. I think she would have liked that.
She also was able to play board games with my sons to a point (some are
easier than others).
I also wanted to bring up to her the boxes and boxes of photos she had and
sort through them and have someone help with putting them in a book and
label them. Good luck, Debbie

Nancy,
Actually, the wedge pillow is not as good from what I've read for people with
OH. If the mattress being waterproof is a problem, you can get an eggcrate
mattress cover to go under the sheet and allow more air to get there. Or you
can
get a standard Twin XL mattress with is not water proof. The hospital bed will
help you sit up when you are in an "Off" period. The hospital bed also has some
advantages if you need a trapeze or other attachments later.
Take care, Bill and Charlotte
====================================

The reluctance is difficult to get past. We had first catherized when
Speedy had a knee replaced in 7/1999, but only for a short period of time
because he was unable to void at all when he first came ome from hospital.
I did the caterization and one of our sons helped some. At that point,
Speedy was unable to reach the area to even attempt because of problems
related to surgery. It is not exactly the job your children have in mind.
When we began this time following the more than week hospital stay in
another city, I began, but each time encouraged him to try. He finally did
and found that it was not too hard after all. He has been doing self
catherization most all of the times since 8/99. Now, other problems (such
as weak legs and poor balance and sometimes the dizziness) are causing it to
be more of a real problem. Often I help or do, but I know I will be doing
full time soon.
He is definitely more comfortable. We do not have to worrry about going out
when he is able otherwise and we do not have to get up as many times during
the night.
You might want to measure and see how much urine Bob really has when he does
void on his on. It should be 500-900ccs. We found that Speedy was going
many times but for only 50-200 ccs at a time. Basically, he was only
relieving a portion of the bladder and always had some urine backed up into
tubes toward or in kidney.
Good luck.
Marilyn

package insert says doesn't effect standing or supine pulse of pts with
autonomic failure.
do we care?
nancy spires

i have trouble in and out of hospital bed. get caught in folds. bed is rental
so mattresss (stress mat, says m. beck) has plastic cover which also traps
air and wrinkles and is "sweaty".
ot recomends flat mattress w/wedge. called med supply who asks how high
wedge? i said 7" then they asked how will i sit up?
what about changeable cover for wedge to keep clean. yikes, any ideas?
thanx
nancy spires

Marilyn,
Thanks for the info. Rob has had problems with constipation too, and
takes MiraLax daily. I think I will ask his doctor about cathing at
our next visit. He is reluctant to try it (for obvious reasons) but
I think it might actually make him more comfortable.
Carol & Rob
--- In shydrager@egroups.com, "Charles and Marilyn Morris"

Jim - I actually like long emails - more like a regular letter. However I
wish people would not automatically include original messages in their
replies. Sometimes there are multiple old messages attached and it takes me
a long time to scroll down through them to the next new message. Even
worse, w/ my memory, I reread most of them before I realize I've read it
before! If we want to refer to something in the original message, it can be
copied into the text; otherwise the subject line should be sufficient. Just
one of my pet peeves from belonging to a couple of egroups w/ the same
problems. ML

Hello Jennifer,
Since you mentioned Hospice as Pam advised, how far do you want to go with
his condition? My husband, Mark, had severe sleep apnea but due to his last
hospital stay with aspiration pneumonia he now has a trach. It's pretty far
to go but Mark is doing so well with his I thought I'd mention it. With the
trach his airways no longer can get blocked. He sleeps through the night
without any assistance. He breathes so much better through the trach and
yesterday the speech therapist asked him to put his finger over the trach and
try to talk. Believe it or not, he can speak better now then he could before.
We have a Passey Muir valve on order so he won't have to put his finger over
the trach and the valve will control the airway automatically. It was a huge
step to take for Mark but he had no other choice and we are glad we made the
decision.
Hope this helps,
Judy Whittaker

Hi Jennifer,
Apnea means cessation of breathing. It can occur whether awake or asleep,
it's just more common when asleep. Go back and read everything you found
about sleep apnea and just ignore the word "sleep"... it's still apnea. I'd
suggest it might be Central Apnea which is common in neurological disorders.
The apnea occurs when the brain fails to send the appropriate signals to the
muscles to initiate breathing. You mentioned hospice was involved now with
your dad, does this mean he does not want any interventions to extend his
life? A CPAP or Bi-PAP breathing device could help.
Regards,
Pam

Did the nurse have any advice as to urgency? This sounds like
something that may need immediate attention.
I suggest you or your mom call your dad's neurologist or his
primary physician, whichever you have found to be most responsive
and tell him/her exactly what the nurse told you. If you have to
leave a message (of course you will) try to specify in the message
that the nurse told you this as well as what she told you.
I have read about three types of apnea. Obstructive sleep apnea
(OSA) which is common in MSA patients for the same reason that they
have trouble with speech and swallowing. Central Nervous System
Apnea (CNA)--this might be what she means and Mixed (something)
Apnea, a combination of the other two, which unfortunately is also
referred to by the acronym MSA. That may cause some confusion.

Jim,
I don't know about "Thermotabs". Are they "buffered" to prevent stomach
irritation? Remember that boullion (one pack or cube) also has about 1000 mg of
sodium. It will not irritate the stomach as an unbuffered salt tablet may. It
also has an advatage of a full cup of water with it.
The sitting BP is the one you want to be around 120/80. That will usually allow
you to maintain some standing BP and still allow you to lay down in bed as long
as the head of the bed is raised somewhat. But as Barbara Smith says, they
prefer the BP to be a little high - like 165/95 or so to falling to a lower
number of 0 when standing.
Take care, Bill and Charlotte

Hi everyone,
I just talked to my mom and the hospice nurse told her that Dad is
experiencing apnea during the day, sometimes taking 22 seconds
between breaths. I don't know if anyone else has been experiencing
that or not. I do not know if that means that his diaphram or lung
are shutting down or what. Any ideas?
Jennifer Worth

I took florinef for a month, but it did not seem to help. The Doctor
prescribed Pro-amatine first but the insurance would not pay for it
at first.
When I was taking florinef I was not taking the salt tablets or the
arthritus medication that I am taking now, so its possible that
florinef might have helped more. The neurologist is giving me the
arthritus medication more for the side effect of raising my blood
pressure than for my arthritus. I kept asking him "how much more
salt" and all he told me was to put more salt on my meals when I eat.
I found the reference to thermotabs in an article on orthostatic
hypotension on the web. I am now taking 900 mg of thermotabs three
times a day plus more salt on my food. I am drinking much more water
than I ever have before also.
My BP is lower setting up than it is laying down and is much lower
when standing.
Jim Parsons

Pesticides, Gulf War illness linked in Pentagon report
By Meg Bryant
WASHINGTON, Jan 16 (Reuters Health) - A new Defense
Department report on environmental exposure to pesticides
during the Gulf War draws a tentative link between
pesticide
use and health problems later reported by returning
soldiers.
But the report stresses that a lack of data on which
pesticides were actually used and the passage of time
since the conflict make it hard to draw any real
conclusions
about the causes of Gulf War syndrome.
"Based on the scientific literature, a potential role of
some
pesticides cannot be ruled out in the undiagnosed
illnesses
of Gulf War veterans," Dr. Bernard Rostker, special
assistant for Gulf War illnesses, told a briefing held
here
Friday to release the report.
The study, conducted by RAND, involved a random survey
of 2,005 Gulf War veterans who served on the ground in
Kuwait between October 1990 and July 1991. RAND also
did a literature search on the health effects associated
with
exposure to pesticides.
In addition, Pentagon personnel interviewed hundreds of
experts on preventive medicine and pesticide use and
developed a health risk assessment in conjunction with the
Environmental Protection Agency to look at possible links
between pesticide use and health effects observed during
the war.
With the exception of about 13,000 servicemen (3%) who
reported using pet tick/flea collars at some time during
their
Gulf War duty, the survey revealed few instances of
intentional pesticide misuse.
One area of concern, however, involved soldiers who had
the task of spraying pesticides in designated areas. In
those instances, "adequate safeguards such as masks and
gloves were not necessarily taken," RAND's Roy Anthony
told reporters.
Pesticides were widely used during the Gulf War to ward
off
insect-borne diseases, a leading killer of servicemen in
previous wars. Roughly half of those surveyed used
pesticides containing DEET, with a median exposure of 30
times a month. Another 6% of troops reported using
Permethrin, on average 20 times monthly. About 38% of
soldiers reported no pesticide use during their time in
the
Gulf.
Multiple exposures were another concern for the
investigators. According to the report, 31% of soldiers
used
more than one pesticide at a time, and 9% used three or
more simultaneously. The Army was the heaviest user,
followed by the Marines, the Navy, and finally the Air
Force.
Of particular concern, the report notes, was the
possibility
that some soldiers may have come in contact with
pesticides known as carbamates and organophosphates.
These belong to a larger chemical group known as
acetylcholinesterase (AChE) inhibitors that have been
associated with chronic symptoms like those reported by
Gulf War veterans--fatigue, muscle and joint pain,
headaches, cognitive impairment and sleep problems.
AChE is essential to proper nerve signaling.
The research turned up only one instance of a soldier
being
hospitalized for pesticide exposure, involving an
over-exposure in a warehouse. The soldier was treated and
has not reported any further problems, Anthony said.
If there is a silver lining to the report, it is that
using
pesticides was highly effective in preventing illness
among
Gulf War troops. Only 40 cases of pest-borne diseases
were reported during the war, Anthony said.
© 2000, Reuters Health Information Services
All information on this site is intended for your general knowledge only and is
not a substitute for medical advice or treatment
for specific medical conditions. You should seek prompt medical care for any
specific health issues and consult your physician
before starting a new fitness regimen. Use of this online service signifies
your agreement to the disclaimer and the terms and
conditions, which you should read, or have read before going
further.
Copyright © 2000 McKessonHBOC, Inc., All Rights Reserved

The article below points up a severe problem with palnning on this
Inauguration. Lower paid (newer) employees often do not have leave and can not
afford rents in DC. Many live in the Alexandria, VA area. With scheduling
events on Thursday (two days before Inauguration Day) during the PM rush hour,
it will mean these prople have to make a decision on taking unpaid leave (and a
short paycheck) or getting home 6 hours late (closing only one bridge caused
people to get home 6 hours late). This will close three bridges (10 lanes of
outbound traffic plus 9 lanes of inbound traffic). Normally Inauguration Day
and one other day are the extent of the festivities, this one is lasting from
Thursday to Sunday. Hope Charlotte does not have to go to Fairfax Hospital on
Thursday afternoon, the Beltway and main roads will be in gridlock.
Maria is back here, but without a computer right now. She intends to bring Dan
back from Florida next month. I also talked to Lita last night. Hospice has
been in and Ralph is taking some food and liquids, but still refuses to get a
PEG. I'm sure this is a strain on the whole family. Remember all of them in
your prayers.
Take care, Bill and Charlotte
Local news provided by:
Metro Networks
Federal Workers Can Take Leave Thursday
The Office of Personnel Management is giving federal
employees permission to take annual unscheduled leave,
comp
time or an unpaid day off tomorrow. An estimated 75,000
people are expected to attend tomorrow's opening
celebration
at the Lincoln Memorial, which will force the closing of
several
streets and three downtown bridges over the Potomac
River.
The DC Emergency Management agency is to announce the
street closings today. That, coupled with the daily
commute
of 300,000 federal workers, could result in massive
gridlock.
OPM Spokesman Mike Orenstein says the unscheduled leave
applies to Thursday only.
WASHINGTON DC

Carol,
Just for info. My husband used to use detrol also. He had a major colon
impaction in July/Augst. Doctors indicated that detrol may cause
constipation. They took him off of detrol. He is catherizing four X day
and is much more comfortable now.
Marilyn in TN

Thanks, Jane. I have to say that Beasley was like a child to me. Everyone in
my family knows this. I have lots of animals and have had lots and they have
all held a special place for me. But Beasley was different. We were attached
at the soul. Either one of us would have gone to the ends of the earth for
the other. In the case of the Beas, she might as well have been human.
Debbie

In a message dated 1/16/01 11:41:00 AM, dwhite@... writes:
<<I know how much you are going through with Ken and appreciate your taking
the time to write to me.
Letting Mrs. Beasley go before unbearable suffering set in for her is
proving to be more and more difficult for me as time passes here. With her
tumor growing (she had become incontinent in the past week -- though we were
managing that well) and her kidney failure becoming more advanced, she just
didn't seem comfortable anymore (though she still accompanied me everywhere
and had her jobs). The thing is, when I asked myself why she should go
through what she was enduring, the answer just wasn't right anymore. I used
to be able to say so that we'd have some good days together. But now the
answer was so that maybe she would sleep comfortably and still be interested
in things. But what was around the corner was no good. I am glad that she
was spared that and was still able to do important things up until the end.
Our lives were intertwined. I have two other dogs who I adore, but with
Beasley, for 13 years it was impossible to pass her without kissing her or
telling her I loved her. And it was easy because she was always by my side.
We had a mutual obsession for each other. It was always difficult to leave
her (even for a short trip that I couldn't bring her on in the steamy
summer) and coming her was always accompanied by a feeling of urgency to get
to her. And when I did, she would be waiting for me on the kitchen table
(!!) so that she had a better view down our long driveway.
I knew I was doomed from the moment I saw her -- feel head over heals. And
you never recover from that. How lucky we were.
Best to you and Ken, Debbie
DONT KNOW HOW MANY FEET DOWN I DUG WHEN I HAD TO HAVE MY GOLDEEN RE T.SASSY
PUT TO SLEEP SOMETHING QUITE SOOTHING... BECKY

In a message dated 1/16/01 11:41:00 AM, dwhite@... writes:
<<I know how much you are going through with Ken and appreciate your taking
the time to write to me.
Letting Mrs. Beasley go before unbearable suffering set in for her is
proving to be more and more difficult for me as time passes here. With her
tumor growing (she had become incontinent in the past week -- though we were
managing that well) and her kidney failure becoming more advanced, she just
didn't seem comfortable anymore (though she still accompanied me everywhere
and had her jobs). The thing is, when I asked myself why she should go
through what she was enduring, the answer just wasn't right anymore. I used
to be able to say so that we'd have some good days together. But now the
answer was so that maybe she would sleep comfortably and still be interested
in things. But what was around the corner was no good. I am glad that she
was spared that and was still able to do important things up until the end.
Our lives were intertwined. I have two other