EVE

2007-07-31 21:28:18

WHAT A COINCIDENCE! I AM 52 ALSO, AND I WAS DIAGNOSED WITH PARKINSONS
IN 1998 AND THEN JUST LAST JULY THAT WAS "UPGRADED" TO MSA. I DO MY
OWN TYPING SO EXCUSE THE TYPOS ( I TYPE IN CAPS SO I DON'T HAVE TO
USE THE SHIFT KEY). BUT. IT'S BEEN MORE THAN A YEAR SINCE I COULD
WRITE LEGIBLY/ NOW I CAN'T EVEN WRITE MY NAME. I HAVE A STAMP FOR
THAT.
I KNOW WHAT YOU MEAN ABOUT THE FEELING THAT SOME FORCE IS PUSHING
YOUR BODY DOWN!!DO YOU FEEL LIKE YOU WILL SLIDE RIGHT OUT OF YOUR
CHAIR ?
MY SPEECH HAS ALSO BEEN AFFECTED. I HAVE TO REPEAT ALMOST
EVERYTHING --AND IT WEARS ME OUT. BUT THEN,I HAVE LOST
40 LBS OVER THE LAST 4 YEARS,TOO
WHAT AMAZES ME IS THE RESILLIANCE OF THE HUMAN SPIRIT. I KEEP ADDING
ON SYMPTOMS/ THE LATEST IS MY EYES--I HAVE BEEN BOTHERED A LOT WITH
BLURRED VISION, BUT LATELY I HAVE HAD PAIN IN MY EYEBALLS. AND I
KEEP GETTING UP EVERY MORNING AND GOING TO MY COMPUTER WHICH KEEPS ME
CONNECTED TO THE WORLD
I HOPE THAT IN SHARING OUR EXPERIENCES WITH YOU , YOU WON'T FEEL SO
ESTRANGED/
SINCERELY,
KATHY TAJA .

Re: [MSA] It's a Norsky Joke!Barb

2007-07-31 12:47:53

Barb;
We haven't even seen the movie Fargo! But just might rent the video some
weekend. I have heard it is great. My husband loved "Dirty Old Men" I mean,
"Grumpy Old Men" with Jack Lemon and Walter Maththial. Ice fishing is real
big in the North. We built a nice rock smoke house last fall and haven't
smoked any fish in it yet. Our old refrigerator with a bucket in the bottom
for hot wood coals burnt up...to much use.
Mary Ann-

Re: [MSA] Netscape Instant Messanger

2007-07-31 11:31:45

Jim,
I don't think much of anything will work on Win 3.1 anymore :o) That must be an
old 486. I think you have to be using Netscape 4.7 at least. You also need the
Netscape Instant Messenger which is free, from the website Pam mentioned or you
can get it with Netscape 4.73. Beware of Netscape 6.0 - I hear they fixed the
problem, but I have not seen a fix yet.
Take care, Bill and Charlotte

Netscape Instant Messanger

2007-07-31 11:05:13

This may have been posted before but if so I missed it. What are the system
requirements for Netscape Instant Messenger? Will it work on Windows 3.1
(the home computer) or does it require Windows 95 or 98 (the portable). Any
other requirements to make it work with an ISP other than AOL?
Peg and Jim from Guam
********************************
*** Peg & Jim Taylor
*** # 29 Cruz Heights
*** Ipan-Talofofo, Guam 96930-4736
*** USA
*** 671-789-2307
*** Note: Guam is 15 hours ahead of
*** Eastern Standard Time (EST).
*** 14 ahead of EDT.
********************************

Re: [MSA] This n that and the other.> Bill

2007-07-31 02:13:46

oh now here we go .... ;-]
yes W-L ... Warren Beatty walked the halls when I was there - in chinos
with the belt in the back, button down collars and penny loafers ... he was
2 years ahead of me ... Shirley was before him ....
I rode the bus to Washington from right out side the HS .. also did
JANGO (candy striper ) volunteering at Doctors Hospital in Washington....
so was in DC regularly ;-]
learned to drive there too ... can drive anywhere (except Athens and Cairo)
that was the time of a place that had the Sir Loiner (what the Hot Shoppes
stole as their double hamburger with secret sauce) .... trays on the outside
of the cars ....
cruising in 49 Fords and 55 Chevys ... know lots about cam shafts and
lifters from those days ;-]
we went bicycle riding at Haines Point when I was in Girl Scouts .... and
submarine watching in High School ;-]
the roller coaster scared the life out of me at Glen Echo ....
the outdoor concerts down by where the Kennedy Center is now .... the music
shell .. renting canoes from Key Bridge area and canoeing down for the music
... the 1812 Overture which 'caught' some not paying attention ... so when
they shot off the cannons, there were a few that got overturned ....
oh yes, I remember very well ... yesterday not so well ... but ....
thanks for the memories
cheers
sheila

Re: [MSA] Fix for the Virus

2007-07-30 17:31:25

Bill,
I got the virus also even with my virus program was running.
God Bless,

RE: Mirapex-Jerri

2007-07-30 09:54:04

Jerri:
Fred is on the Mirapex 1.5mg 1/2 3 times a day. He shakes if he goes
off of it, but each person is different. I would call your Neuro
tomorrow first thing to see what he has to say or maybe his exchange
can get a hold of him today , so you can fine out right away to do.
It would give yourself peace of mind, and also help your husband.
Hope things get better
Vera

Re: [MSA) mirapex - reply to Jerrie

2007-07-30 06:36:50

Dear Jerrie,
My husband also was recently put on Mirapex at .25mg 3xday. After a
few days, his legs became like rubber and he couldn't walk. His dead
weight was very difficult to manage and he was sleeping all the time.
We had to stop it because I couldn't do transfers with no help from
him. Yes, I'm sure it was the Mirapex because he improved after we
stopped.
Marie Fox

Re: [MSA] Option to avoid virus>Bill

2007-07-29 20:33:08

Bill
My McAfee updates daily. It comes up to tell you if there is a new
update or if you have the latest one. Sometimes it will go a week with
nothing new and then the next week it will update every day. This last
week I think I updated every day. It takes about 5 minutes to do it but
it's worth not having to worry about it.
Thanks for all you help
Sally

Weather in USA Bill

2007-07-29 20:23:27

Michelle,
You know Anne has to wear a sweater at 27 deg C. :o) I think she is off to the
mountains to see Maria. How is that ornery old bugger you are married to?
Tell him I said he better be in his wheelchair. Any more stiches or blackeyes?
Hugs to all the upside down folks. If Charlotte was going outside as slippery
as it's been here - she might be upside down also.
Bill and Charlotte

Re: [MSA] something profound for everyone

2007-07-29 09:46:47

Shelia
What wonderful thoughts
I loved it, thankyou
Sally

Weather in USA Bill

2007-07-29 06:05:53

Still cost a packet in supplies though Bill :-)....offered Anne and Tony to
come stay for hols but she says it's too cold here for her <LOL
Take care
Fordy's Michelle in Oz

Lesline Update for the week

2007-07-29 00:13:34

Hi All
Just thought I'd bring you all up to date on my household. It looks
like I will be moving my 79 year old mother back to KS from FL within
the next 6 months. She is at least thinking about it. Her dementia
comes and goes but mostly comes and stays now. I will begin to look for
assisted living areas this week but my biggest concern is the fact that
she is extremely anti-social and will be quite a handful for any place.
Her health is good, her mind is unstable.
Elmer is holding his own but is having a great deal of back pain again.
We are trying to figure out how to make him more comfortable with little
success for now. Mary isn't driving in our cold, snow and mud now so
she is again housebound and we are doing most of her "fetching".
The little "B" boy is going strong and growing like a weed. He brings
sunshine to all areas of our life.
I'm still working at the hospital although I would much rather be
teaching. For anyone who wonders how or why insurance can get so
screwed up at the hospital or doctors office, I would tell you, but
there's no way you would believe me!!!! =:
copies of front and back sides of your cards and put in writing
everything you can imagine that might be needed to file your insurance.
List SS#, name and address of insurance, supplemental insurance, where
you work, when you retired and anything else that might be needed. You
can't believe how hard it really is to keep all that stuff straight when
every insurance has it's own way of doing things. There is NO
consistency of any kind between companies. Each has it's own code and
how it works.
PLUS, it varies from 1 state to the next on everything. Also, if you
have anything happen in your car, insurance is to be filed with car
insurance first. Try to explain that to someone who just shut a hand in
a car door!! Have any of you who are on SS been subject to the
wonderful repeat questions about black lung, VA, accidents, retirement,
etc. It's enough to drive you crazy. Never assume that because you
have given the hospital your information one time that they will still
have it in the system. WRONG!! Maybe it should be but don't count on
it. They people who design computer software for hospitals have never
had to use that software. =:<(
So, you ask, how do I like my job by now??? I've had better but I've
also had worse. We are surviving, some days better than others. Think
good thoughts, I think I will need all the help I can get in the next
few months.
And yes, the 500+ wedding is progressing and we are slowly moving toward
June 9, 2001. Anyone want to volunteer to come help?? I think I just
may need it!!
mud in it's place.
Sally

Re: [MSA] It's a Norsky Joke!

2007-07-28 13:30:19

Mary Ann,
My son is married to a "norsky" and lives in Red Wing (down the River a ways
from Twin cities).
Being raised in the South, one gets weary of all the fake dialects one hears
in movies and all the "how to talk southern" stuff that floats around. When
I started visiting MN I was thoroughly enchanted by the dialect! It was like
music to my ears! Minnesotans are the friendliest, most likeable, most
hospitable people anywhere and southern hospitality has nothing on them!
Barb Pond in VA
PS: Vivian Leigh had the best fake Southern accent in GWTW and that is
because she was English. The old Virginia dialect is very English and
British actors have no trouble in adapting to it.
I was enthralled by the movie FARGO. Maybe you MNians are sick of that movie
for the overplaying of the dialect, but I got a kick out of it!

something profound for everyone

2007-07-28 12:10:28

<<

Re: [MSA] Option to avoid virus

2007-07-28 04:41:03

Can one only get a virus if one opens attachments? In other words, can a
virus be gotten from just opening an email? I rarely open attachments anyway
as I have so much mail I just don't have time to open them all and frequently
they are encrypted and can't read them so I just don't open them.
Barb Pond in VA

Re: [MSA] Prescriptions-and non for SDS

2007-07-28 02:04:29

Mary Ann,
Wow, taht is a huge order!
Bill

Re: [MSA] Fw: New to Your Group

2007-07-27 22:04:48

Sue;
One Very Simple method I use for my Mother, to help her in and out of the
car, is to use a large plastic garbage bad on the passenger seat. Also I
drive up on the sidewalk so there is no step up for her. You as the driver
may not need the sidewalk. I have scared several people with my sidewalk
driving.
Mary Ann-

Re: [MSA) mirapex

2007-07-27 17:34:23

hi everyone: bob is taking mirapex .25 (3x a day). the other evening he
as were walking (with a walker) suddenly he couldn' walk, and his whole
body started shaking violently with his arms totally out of control &
his teeth chattering so badly, he even broke a cap. after about 5
minutes, we were able to get him back into the car. does anyone know if
mirapex could have caused this? I will call the neuro tomorrow. thanks
for your reply..regards, jerrie

Non-Prescription Medicines to Watch out for

2007-07-27 11:45:28

MSA patients should avoid cold medications containing ephedrine and
pseudoephedrine. Sudafed and Robitussin both contain psuedoephedrine.
Because MSA patients typically have a problem with the autonomic nervous
system which is no longer able to effectively regulate blood pressure, this
drug may cause a sudden sharp rise in blood pressure which can lead to
stroke. Taking Sudafed was attributed to the cause of death of at least one
person on this list in the past. Ephedrine is also contained in some diet
pills which should also be avoided.
Regards,
Pam

It's a Norsky Joke!

2007-07-27 01:42:57

Hi all;
Oley and Sven are good ol Norsky's that grew up together. Well Sven went to
college, and Oley married Lena and stayed home on the farm. (Sven probably
went to one of those electoral colleges, but that's not part of this joke).
One day Sven happened over to Oley's and found him just starting to dig a
hole." What ya doen Oley". "O, I gotta did a new craper hole, the outhouse
is way to full ya know." "Well Oley ya don't have ta dig a new hole, I got
an idea. Ya take a half a stick a dynamite and light it in the out house and
then ya put a whole stick of dynamite in the hole and light that one. When
the first one goes off the out house will fly up in the air, then the next
one goes off the hole will get cleaned out. Then the outhouse will come back
down one the clean hole."
To Oley that was a great idea. So Oley does just that and they both run
behind the barn ta watch. But just then, Lena comes running out of the house
and goes into the outhouse. Kaboom! and then KABOOM again!!
Down comes the outhouse. Oley runs over to see if Lena is ok. He opens the
door and Lena kinda dazed says to Oley. "Tis a good thing I didn't
let dem two in the house"
Mary Ann-
Ps. Pete is half Norwegian and Danish.

Prescriptions-and non for SDS

2007-07-26 15:38:45

Bill, Pam, John, and all you wise ones.
I would like a list of Medications given to the SDS patient
What they do and what the side effects can be.
What non script meds to avoid and why.
Also vitamins and supplements, and which to avoid and why.
I want to be more prepared when Mother sees her Parkinsons doc later this
month.
It's kind of like taking your old car into the shop and explaining the noise
it makes when your at the wheel....but the car doesn't make the noise at the
shop...
Not all of Mothers symptoms are visible in the short visit with the doctor.
And my brain has been misfiring for a long time. So something written down
would be a great comfort. Besides impressing my siblings is so much fun.....
Mary Ann-

Re: [MSA] Words of Wisdom :-)

2007-07-26 12:50:44

Thanks Karen,
It's been awhile since I saw that one.
It always makes me laugh and then I really feel better. I'd love to
have a few of those mounted on the wall by my computer at work. Ummmm,
I might have to figure out a way to do that =:
Sally

Fw: Reminder: Chat Time Today

2007-07-26 08:08:32

Since the holidays are over let's start these chats up again regularly. If
this time isn't convenient let me know of other times you'd like to try.
Hugs,
Pam
Chatname: PammyGB

Re: [MSA] Virus alert

2007-07-25 20:31:08

Celeste,
Try buying Norton Virus 2001 and cleaning up the files - it may work. First
boot from your rescue disk.
Take care, Bill and Charlotte

Abstract: Neuro-ophthalmology of movement disorders.

2007-07-25 17:41:51

Curr Opin Ophthalmol 2000 Dec;11(6):403-7 Related Articles, Books
Neuro-ophthalmology of movement disorders.
Hamilton SR
Neuro-ophthalmology Unit, Neuroscience Institute, Swedish Medical Center,
801 Broadway, Suite 830, Seattle, Washington, USA. drsrhamilton@...
[Medline record in process]
Movement disorders are a diverse group of neurologic disorders that share in
common the frequent development of clinical abnormalities in ocular motility
or visual perception. This article reviews the recent literature pertaining
to the neuro-ophthalmologic advances in the basal ganglia disorders
(Parkinson disease, progressive supranuclear palsy, corticobasal
degeneration, multiple system atrophy, and Huntington disease), the
spinocerebellar ataxias and episodic ataxias, amyotrophic lateral sclerosis,
benign essential blepharospasm, hemifacial spasm, and Tourette syndrome.
PMID: 11141633, UI: 21022382

FYI, not Shy related but interesting- disclosing information on the performance of doctors

2007-07-25 15:39:36

Thought this was interesting and decided to post to our list.
later and hugs,
cindy
Medicare to Propose Lifting Ban on Disclosing Doctors' Mistakes
NEW YORK (Reuters Health) Jan 03 - Federal health officials are
contemplating whether to reverse a longstanding policy that prevents
Medicare beneficiaries from obtaining information about physicians who
may have made mistakes in caring for patients.
The policy switch under consideration would allow peer review
organizations (PROs), which contract with Medicare to ensure quality
care, to disclose the findings of investigations they conduct into
patient complaints, even if a physician objects. Currently, PROs may
release hospital-specific findings but are required to obtain a
physician's consent to disclose doctor-specific data.
In practice, the information that patients receive is limited because it
is difficult to reveal the results of a probe without disclosing the
physician-specific findings, an industry source told Reuters Health.
The Health Care Financing Administration (HCFA), which administers
Medicare, is trying to come to grips with the dilemma. HCFA is in "the
beginning stages" of crafting a proposed rule soliciting public comment
on allowing PROs to disclose information on the performance of doctors
and other healthcare practitioners, an agency staffer told Reuters
Health.
That proposal, which may be released later this year, would seek
feedback on what information should be revealed to patients and their
families in the "final disposition" of a complaint, he explained.
In the interim, HCFA intends to issue "clarifications" to its PRO
manual, Reuters Health has confirmed. In the next week or so, the agency
intends to reiterate its position that PROs may provide "appropriate
information" as long as they don't identify individual doctors or other
practitioners.
The clarification comes in response to a lawsuit filed against the US
Department of Health and Human Services and HCFA by the son of a
Medicare patient whose mother died 7 days after being admitted to
Memorial Hospital in Jacksonville, Florida.
Alan Levine wrote to Florida Medical Quality Assurance Inc., a Medicare
PRO, on February 1, 1999, requesting a review of the care his mother
received. In August, he got a letter from the PRO saying that it had
completed its review but that it could not inform him of the results
because his mother's attending physician, Dr. Richard Boehme, did not
consent to the disclosure.
Mr. Levin and Public Citizen, a co-plaintiff in the case, contend that
the government's instruction manual prohibiting PROs from disclosing the
results of a probe when a doctor doesn't consent violates a federal law
that entitles beneficiaries to have that information.
"I don't frankly see why they think they have a right to keep the
results of investigations secret," said Amanda Frost, a staff attorney
for Public Citizen Litigation Group, which filed the suit.
Debbie Carson, a spokeswoman for the Florida PRO, declined comment
because of the pending litigation.
HCFA concedes that the effort to clarify its instructions was sparked by
the lawsuit but maintains that a broader policy shift is still in the
conceptual stages.
Congress established PROs in 1983 primarily to ensure that Medicare was
paying for medically necessary care. Since then, PROs have evolved to
focus much more on quality improvement.
Exposing practitioners responsible for shoddy patient care raises new
and more complicated policy questions, sources suggest. Should the
federal government be involved, for example, in fact-finding missions
that provide fodder for malpractice suits? By identifying physicians by
name, would the PROs undermine their ability to get physicians to report
information used in reducing errors and improving patient care?
"A lot of this comes down to the question of what PROs should be," Dr.
John M. Eisenberg, director of the federal Agency for Healthcare
Research and Quality, told Reuters Health.
"PROs are a quality improvement arm of Medicare, which wants to be a
valued-based purchaser. It basically wants to buy the best care for its
beneficiaries," he explained.
In the US, licensing and accrediting functions are handled, by and
large, by state and private organizations, he added.
Dr. Eisenberg, a former chief of medicine at Georgetown University in
Washington, said that peer review would become a "thorny issue" for
PROs. Doctors and other healthcare professionals may be less willing to
critique each other if they thought that information would end up in a
court document, for instance.
A spokesman for the American Medical Association said that the
organization had no comment at this time.
In the view of patient advocates like Frost, the issue is more
clear-cut. "Part of being a Medicare provider is having the quality of
your services reviewed by the government," she said.

Virus alert

2007-07-25 02:33:21

Hey everyone, Dawn Morley caught the David Richards virus from
thisight her Norton did not caught the virus. He system is down and
out be very careful don't open any sights attached to her e-mails.
Please Pam Bower please unsubscribe her if you can until she is
repaired!
Celeste Re Dawn Morley

Fix for the Virus

2007-07-25 00:23:38

This is what I used to get rid of the virus yesterday. I already had a
Windows98 boot disk which came with my computer so I didn't have to make
one. I was getting a message telling me to reload Windows 98. I didn't
have to though, I only needed to extract (recopy from Windows98 .cab files)
the 4 files that were corrupted by the virus.
I noticed Dawn Morley caught the virus as well as Barb Selleck.
I hope these instructions help. If anyone wants me to email them the
FIXMTX.EXE file let me know. It's only 43MB.
Hugs,
Pam
extract /a precopy1.cab wsock32.dll /l c:\windows\system
extract /a win98_40.cab explorer.exe /l c:\windows
extract /a win98_40.cab rundll32.exe /l c:\windows
extract /a win98_40.cab taskmon.exe /l c:\windows
extract /a win95_10.cab wsock32.dll /l c:\windows\system
extract /a win95_10.cab explorer.exe /l c:\windows
extract /a win95_10.cab rundll32.exe /l c:\windows
extract /a win95_10.cab taskmon.exe /l c:\windows
extract /a precopy1.cab wsock32.dll /l c:\windows\system
extract /a win98_40.cab explorer.exe /l c:\windows
extract /a win98_40.cab rundll32.exe /l c:\windows
extract /a win98_40.cab taskmon.exe /l c:\windows
extract /a win95_10.cab wsock32.dll /l c:\windows\system
extract /a win95_10.cab explorer.exe /l c:\windows
extract /a win95_10.cab rundll32.exe /l c:\windows
extract /a win95_10.cab taskmon.exe /l c:\windows

Option to avoid virus

2007-07-24 21:30:06

For those looking for a way to avoid viruses, note that the daily listing
that groups the most recent batch of messages together does not include the
attachments. Thus you can't get a virus when you are getting the messages
that way. While the listing occasionally has some other problems, catching
viruses from the attachments is not one of them.
Peg and Jim from Guam
********************************
*** Peg & Jim Taylor
*** # 29 Cruz Heights
*** Ipan-Talofofo, Guam 96930-4736
*** USA
*** 671-789-2307
*** Note: Guam is 15 hours ahead of
*** Eastern Standard Time (EST).
*** 14 ahead of EDT.
********************************

Re: hi everyone- Mary

2007-07-24 14:11:35

Mary:
No! I'm sorry I hadn't heard you were in the hospital , otherwise I
would of written to you before this. I've been so behind on the
posting, so I didn't know about you till Sally said something about
you.I hope that you are better now. I think of you offen , but time
just fly's by and then it's another day and haven't gotten what I
wanted to do done. I hope that you are getting the rest you need.
Just sit back and read one of your books, a long one. I know you
enjoy that.
I got a break the last few days, Heather took a trip up your way with
Hannah , so I didn't have to watch her for a few days. So I got to go
see Dolly. It took me long enough, but I did make it. I always enjoy
seeing her. Next week Heather starts working at Disneyland, so it
will be back to watching Hannah during the day, but she is a joy
already 3 months old. Really a sweetheart, but that can all change,
we'll see when she's 2.
How is Warren doing now? He sounds about the same as Fred. Can't do
anything, it wears him down also. I take him this Friday to the Neuro
so will see what they want to do this time.
So your looking into a small Van. I just got a Chevy Astro Van. Got
rid of the little Vista , but really didn't want to, but it didn't
pass the Calif smog test and I couldn't get an engine for it anymore,
it would have to be rebuilt and my son doesn't have the time to do
that, with working and taken care of his four kids and I need a car.
So that's what made me do it. The astro I got , so if I need to get a
lift for Fred someday, we can put it on it. I've looked into it this
last week, looks like it will run around $6000. I hope it wont come
to the lift, but got the Van just in case. I like the Van, I feel
like a trucker now. I sit above the other cars. Kind of neet. Anyway
take care of yourself and don't over do. (look who's talking) Do as I
say , not as I do.
{{{{hugs}}}}
Vera

Re: [MSA] Perfection

2007-07-24 03:15:49

Ann,
Sure brought tears to my eyes. Thanks for sharing with MSA!
Karen

Reminder - Kentucky/Southern Indiana Support Group ...

2007-07-23 21:23:51

We would like to remind you of this upcoming event.
Kentucky/Southern Indiana Support Group Meeting
Date: Sunday, January 14, 2001
Time: All Day
Date: Sunday, January 14, 2001
Time: 3 PM
Location: Cook Memorial Methodist Church
2915 South Walford Drive
Jeffersonville, Indiana
(Louisville, Kentucky area)
Contact: Harriet Gossman
Jeffersonville, IN
email: Harriettlpn2@...
phone: (812)288-7532
or
Contact: Judy and Bob Miller
Louisville, KY
email: B1952miller@...
phone:(502)253-9379

Words of Wisdom :-)

2007-07-23 18:00:31

WORDS OF WISDOM
1. I can please only one person per day.
Today is not your day.
Tomorrow isn't looking good either.
2. I love deadlines.
I especially like the whooshing sound
they make as they go flying by.
3. Am I getting smart with you?
How would you know?
4. I'd explain it to you,
but your brain would explode.
5. Someday we'll look back on all this
and plow into a parked car.
6. There are very few personal problems
that cannot be solved through a
suitable application of high explosives.
7. Tell me what you need,
and I'll tell you how to get along without it.
8. Accept that some days you're the pigeon,
and some days you're the statue.
9. Needing someone is like needing a parachute.
If they weren't there the first time you need them,
chances are you won't be needing them again.
10. I don't have an attitude problem.
You have a perception problem.
11. Last night I lay in bed looking up at the stars
in the sky and I thought to myself,
"Where the heck is the ceiling?"

Re: [MSA] Virus WARNING again

2007-07-23 12:54:24

Hey all,
That virus changed it's own name when it got on Dawns computer. DO NOT OPEN
Attachments until everyone gets rid of the virus. Just delete them. If you
must send an attachment make sure you tell us what it is in the message and that
you actually opened it safely with an up-to-date virus checker.
I know Pam is having trouble with her computer because of the virus. I was
lucky and only had to manually remove the virus from a bunch of files. I do
have two files that are in quarantine, hopefully they are not necessary files.
If anyone uses Win 98 and has the two files listed below sent them to me as
attachments (I don't have them so they must be AOL files):
can you email me SIFBP.DLL and SCFBPPM.DLL if you have them.
I have a theory those might be part of AOL though and if you don't have AOL
you won't have them.
Ann, since your computer has not sent any messages with attachments, your virus
checker may have caught it. You should check your disk with a virus checker
whatever one you use.
Take care Bill and Charlotte
======================================

Re: [MSA] Garbled Speech in the mornings

2007-07-23 02:17:10

Jim,
It is a sign that she could probably use speech therapy. The therapy usually
helps Charlotte for a few months anyway. I wish I could get her to do it every
day. Her volume and clarity are much better for the therapist than me.
The other sign is that she may have more swallowing problems.
Take care, Bill and Charlotte

Re: Warning-Thanks

2007-07-22 23:56:38

Thank you everyone for the warning on the virus from David Richard.
Maybe it's a good thing that I haven't had the time to read all the
posting on the forum lately for the last few weeks. Otherwise I may
of opened it up, but I went to the WARNING,WARNING, WARNING that you
posted Bill. SO staying as far away from that as I can . I have the
McAfee vshield , but still wouldn't want to take a chance.
Thanks again.
Vera

OOPS!!

2007-07-22 21:21:19

I did try to open that e-mail TIAZINAA-JPG
and it did not open , did I goof up.
Ann from Soddy,TN

Perfection

2007-07-22 13:31:57

GOD'S PERFECTION

Garbled Speech in the mornings

2007-07-22 02:57:32

Peg is experiencing unusually garbled speech this morning. Her blood
pressure after she got up was 147 / 97 with a pulse of 85. It has stayed up
in the 133 / 83 range for four hours which is unusual. Such garbled speech
is becoming more common.
Have others experienced this. Of what may it be a sign.
Peg and Jim from Guam
********************************
*** Peg & Jim Taylor
*** # 29 Cruz Heights
*** Ipan-Talofofo, Guam 96930-4736
*** USA
*** 671-789-2307
*** Note: Guam is 15 hours ahead of
*** Eastern Standard Time (EST).
*** 14 ahead of EDT.
********************************

MediCal as good backup

2007-07-22 01:43:59

We are running into an interesting situation here that I haven't fully
understood. Peg is covered by PacifiCare which is also big HMO in
California. Here PacifiCare is now saying Medicare has become the primary
coverage for Peg. Pacificare is rebilling everything they do to Medicare.
At the same time PacifiCare is saying that they are not obligated to do more
than Medicare does for Peg (with the exception of prescriptions which have a
$7.00 per filling charge). Yet PacifiCare is still collecting the exact
same amount of health benefit payments from Peg.
By the way the word on the "street" is that PacifiCare is in financial
trouble in California. Their stock has tumbled significantly.
Peg and Jim from Guam
I believe! We have private insurance which pays for many of our needs at
this point, and we will enroll Bob in MediCal this month - didn't need to
before, but I think it's a good backup. I view the VA as another backup at
the present time, but I'm trying to think of the future, as I will most
likely have to terminate my employment prior to what we had originally
intended (didn't work while children were growing up, so it really IS my
turn!). Thank you so much to each of you who have responded - what a
wonderful wealth of information!
********************************
*** Peg & Jim Taylor
*** # 29 Cruz Heights
*** Ipan-Talofofo, Guam 96930-4736
*** USA
*** 671-789-2307
*** Note: Guam is 15 hours ahead of
*** Eastern Standard Time (EST).
*** 14 ahead of EDT.
********************************

Re: [MSA] MSA {Georgia Support-TOM}

2007-07-21 19:20:43

thanks for phone and email kathy. Your email could have been my fault also.
when i see double, i often delet the wrong things......probably delete
something imp...call as soon as can k prob monday tom

Re: [MSA] small veins/Mary Strong

2007-07-21 17:15:05

I am okay. I am bound and determined to do all I can, no matter how much it hurts.

I had so much support from this group, I can do no less.

It is good sometimes to get it all out into words. Soothes sometimes as I try to remember the things that hurt so bad at the time. I do not like the memories but there is no other way to face the reality that Ralph is gone and I did my best to keep him comfortable. I can assess what I did and try to figure out a way for others to do a better or at least a more efficient way of care giving.

Everyone needs someone to talk to. This site is a good place to compare notes.

May God bless everyone as they read this note to you, Mary. I do not mind having others read my notes. Right now I have no secrets. I just have experiences that were tailor made for me. Why, I do not know but I am satisfied that the Lord knew best when he said, "Ralph, you have had enough, come on home."

Have a lovely day. I am going to go about taking care of me and all around me. I still have lots to keep me busy. Still trying to learn how to buy groceries and household supplies for one person.

God is good.

Barb, in Arlington

[INLINE] Hugs to all.

Re: [MSA] Middle Atlantic support groups

2007-07-21 01:24:12

Yes there is a group in the Washington-Baltimore area with about 20 members at this time. The best attendance we have had was 7 people with 4 patients represented. I keep the list of email addresses and send out an email about monthly. We do not meetusually in Jan-Feb due to weather. I generally suggest a meeting place and if I get replies that people are coming - we meet. If I get no replies - we don't meet. If you are in this area, I'll add you to our email list, just let me know how much info about yourself you want on the listing and let me know at my private email.

I think they are trying to get a group going in the NY area. I have seen info about both Long Island and Northwest of the city.

I have not seen anything about a Philly group.

Take care Bill and Charlotte

Re: [MSA]Virus warning - Important!

2007-07-20 19:42:05

Hi, all-
The last two downloads of my email have had a message in it from: David
Richard with the subject (MSA) unknown. It has an attachment with it.
My virus-checker (McAffee) stopped this message twice, because it contains
a viurs called w95/mtx@m. Don't open this message or your computer will get
infected. If you already have go to for more info and instructions on what
to do:
http://www.antivirus.com/vinfo/virusencyclo/default5.asp?VName=TROJ_MTX.D
barb k

WARNING!! WARNING!!!!

2007-07-20 14:17:42

This is the one - Do Not Open the attachment it infects a dozen files before the
virus checker catches
it. Sorry Pam it is David Richard not David Bower. I was able to clean it but
had to quarantine two
or three files.
Take care, Bill

[MSA] WARNING!! WARNING!!!!]

2007-07-20 13:01:05

I hope this gets to you before the file

WARNING WARNING WARNING

2007-07-20 03:54:41

The file before this one has a vicious virues in it - it is the one from David
Bower and has a Tan.... something exe file attached
DO NOT OPEN THE ATTACHMENT !!!!!!!!!!!!!
More later
Bill

Re: [MSA] This n that and the other/quilting

2007-07-20 01:41:35

All,
Who is the quilter in this group?
Actually, I am looking for someone to finish off UFO's that I am no longer
able to.
I am in SW Virginia and would be interested in any contacts in this general
area.
Barb Pond in VA

MSA {Georgia Support-TOM}

2007-07-19 23:24:36

Hi Tom,

I thought I replied earlier in the week, to your email about organizing a Georgia Support Group, But I am not very good on this computer so theres no telling who I emailed.

I will be glad to do anything I can to help. I have no idea where to start but if you lead me in the right direction, I will help you.

Just let me know, I'm here all the time

Thanks, Kathy

Re: [MSA] Jesup, Georgia

2007-07-19 12:16:32

Kathy if I'm not mistaken there is another person subscribed here who lives in Jesup. Hopefully they'll see this and write you.

Regards,

Pam

MSA {marilyn}

2007-07-19 03:17:16

Hi Marilyn,

We will be in Pigeon Forge Tenn. Feburary 18-24. I would love it if we could meet for lunch. I don't know how far we will be from you. The only thing about making plans is I wouldn't want you to drive a long way and then Dave not be able to leave the cabin. Maybe if it's not to far we can work something out.

The only contact we have had with anyone with MSA has been through this group. I would really like to meet and talk with you.

How far are you from where we will be?

Take care, Kathy

Re: [MSA] Fwd: Titanic

2007-07-19 00:16:01

Hi John,

I wanted to let you know how much Dave loved this. He laughed and laughed. He never reads emails but last night he and I was planning our trip and was looking at things to do in Tenn. on the computer. I was showing him how to read our emails and we looked at your's.

Thank you for giving him a good laugh.
Kathy

Re: [MSA] help:) Searching Archives

2007-07-18 19:54:57

Hi Nancy,
Go to this website: http://www.egroups.com/messages/shydrager
At the right of the screen there is a line that says "View by Date | View by
Thread"
If you click on "View by Thread" it should sort things by each topic and its
replies.
Above that line there is a box with a picture of a magnifying glass beside
it. This is the search box.
You can type in a word or phrase that you want to search for and then press
"Go". Make sure
you are searching "This Archive" and NOT "All eGroups".
I'll try to find the links I sent you about travel in Switzerland. I may
have sent it from my work computer but
I'm sure I can do a search and find it for you.
Hugs,
Pam

Aides &amp; $$$$

2007-07-18 08:34:08

Seems like everything ends up w/ the bottom line of money, doesn't it. I
found a number of aides by visiting the local Senior Centers in our area.
Each one of centers maintains either a list or a bulletin board of
caregivers in the area. These individuals are private hire and therefore
you are taking some chances w/ them, but I found that w/ my Dad in the house
we could "audition" someone for a while and gain confidence w/ her before
leaving her alone w/ Mom. Also we removed jewelry and other valuables from
their home (stored them at my house) to cut down on risk of theft. Other
problem w/ individuals is that you may not have any backup for their
illnesses or car problems. But agencies aren't much better - didn't showed
up for evening visits during our big snow in Dec.
We had one woman for over 15 mos and she was wonderful - provided all the
personal care for my mom, light housekeeping and did their laundry. When
Mom broke her arm and we needed round the clock care for a couple of weeks
she stepped right in. Was charging us much less than agency rates. And
right before Mom went to the hospital, we found another local woman for
weekends who I think would have been as good. They're out there; finding
them is trial and error.

Re: [MSA] Happy New Year

2007-07-18 08:04:43

Hey Patricia,

I am so glad you have the opportunity to go to the ball. Enjoy your self. Watch out with those heels.
Have fun,

Kathy

trip&gt;Kathy

2007-07-17 18:46:42

Hey Judy,

We live in Jesup, Ga. NIce place to live. I'm not from here but I really lilke it.

I know you have to love Hilton Head Island, I've never been there but everyone talks about how beautiful it is.

This is the coldest winter we have had in a long time. Our heating bill tripled. No snow this year.

try to stay warm

Kathy

help:)

2007-07-17 15:10:50

ok. I need to know how do I change searching the archive by date to
'searching by topic' please:)
OR
pam do u by chance have the switzerland url's u sent me??
I sortof screwed up early AM and deleted my bookmarks from the cache,
location, my computer drive, ect.
thank u,
nancy m.

Re: [MSA] Fwd: Fw: HOPE THIS DOES NOT OFFEND ANYONE-I FOUND IT CUTE!

2007-07-17 08:23:58

John,
I think your computer caught a virus, it keeps sending those two jokes.
Bill

Reminder - Houston, Texas Parkinson Plus Support Gr...

2007-07-17 03:53:36

We would like to remind you of this upcoming event.
Houston, Texas Parkinson Plus Support Group
Date: Saturday, January 20, 2001
Time: All Day
Date: 3rd Saturday of every month
Time: 1 PM
Location: Memorial Hermann Southwest Hospital Professional
Building II,
Learning Center B.
Houston, Texas
The hospital is located at 7737 Southwest Freeway at the
Beechnut Exit
Contact: Karen Kennemer
2235 Cedar Falls Drive
Kingwood, TX 77339
USA
281-358-2282 (fax, too)
email: KMK1224@...
This group has members with
Multiple System Atrophy, Corticobasal Degeneration and
Progressive Supranuclear Palsy. Anyone with an interest in
neurodegenerative disorders is welcome to attend.
January 20th Agenda:
A urologist will speak about incontinence in neurologic
diseases. The speaker is David Mobley, MD who also has a
website (www.drmobley.com) and is a prominent radio urologist in
Houston.

Barb&gt;Blacksburg

2007-07-16 22:29:18

Hi Judy,
It's been fun being a Hokie the past couple of years (if you like football).
We enjoy the rivalry between WVU and Tech. It's always a good game. When
did Mark graduate? JP had his 45th this year....5 more and he's "old guard".
Never been to Princeton itself, but go by it on 460W when heading for Ohio
where a daughter lives. Doesn't Princeton have a good mall? People from
here sometimes go shopping there.
Barb

Re: Barb&gt;Blacksburg

2007-07-16 16:02:24

Hi Barb,
It was fun to see you mention Blacksburg. Mark got his BS in Electrical
Engineering from Virginia Tech and we went there once so he could show me
where he went to school. What a lovely place. Mark is from Princeton, WV so
it was like home to him.
Take Care,
Judy

Re: money at home

2007-07-16 10:05:55

I charge $2.00 a page. Double that if it is a 24 hour return. I also charge
$5.00 if they email or efax it to me and then want me to deliver it to them.
I have met many students as they are heading into their classroom. I charge
$30 for resumes. $2.00 for each extra page of reference and $5.00 for a cover
letter. Hope this helps.

trip&gt;Kathy

2007-07-16 06:46:50

Hi Kathy,
I forgot to ask where in Southern Georgia you live. Mark and I are on Hilton
Head Island where it's been cold as a whore's heart lately and I'm really
tired of it. I imagine you are feeling the same way. Since Mark is from
West Virginia and I'm from Ohio we don't mind driving in snow but we sure
hate this damn cold weather.
Take Care,
Judy

FYI-Speech&gt;Judy&gt;Sally&gt;Mark Update

2007-07-15 22:12:28

Hi Sally and All,
Yes, Sally, I'm finally back to work this week and it's been a great change
of pace. I have an LPN right now staying with Mark for 5 hours a day to the
tune of $25.00 an hour which I found just way to expensive so tonight I
talked with a girl that will stay the same amount of time for $10.00 so I
hired her. Mark liked her and was happy with the price. She has been
working part time for a gentleman who is on a vent and has a trach and
feeding tube so she has experience with both.
Mark is doing OK, goes for a trach change on Wednesday and another swallowing
study next Friday. He'll be going down from an 8 to a 6 and hopefully will
be able to start eating pureed foods. Mark's new speech therapist gave us
some info and a video on the Passy Muir valve for the trach so I'll be
requesting a prescription for it from the ENT Wednesday and we'll see how he
does with it. The PEG is great, so easy for the meds but last night he
pulled the darn thing apart during feeding and drenched the bed and himself
with Jevity which was really fun to clean up this morning. I'm threatening
hand cuffs but not getting much response from him!!!
Christmas was great, Mother and my Brother were here for 2 weeks. My Brother
brought his two labs so we had 5 dogs in the house. Never a dull moment
here! My two nieces flew in for a few days and it was so much fun. I really
hated to see them go but it's nice to have the house back to normal again.
Rebecca spent 4 days at the Vet over New Year's with a foreign object in her
belly. She ate a huge piece of heavy duty plastic and we have yet been able
to figure out where she got it. She had to have emergency surgery on New
Year's Eve and got spaded at the same time. You would never know anything
happened to her. Still playing her little heart out and I'm having a hard
time trying to keep her quiet. Darn puppies!
I haven't been to active here but still do read all the messages daily.
Take Care,
Judy

Re: [MSA] trip&gt;Kathy

2007-07-15 19:05:44

HI Kathy,
No mistake taking the trip. You go girl! I'm still planning a trip for Mark
and I in May when my niece graduates from Miami U. in Oxford Ohio. It will
be a hassle but well worth the effort. We haven't traveled since Mark has
had the trach and PEG but I think we can manage. Thank God for whoever
invented the portable suctioning machine! It has been a life saver for us
since I have to take Mark with me if I don't have anyone to stay with him. I
just load him, the three poodles, and the portable suction machine and off we
go!
Take Care,
Judy

Re: [MSA] spanish -speaking MSA GROUP

2007-07-15 09:45:57

Hi Kathy,
There are several people from Spanish speaking countries on my contact list.
If you'd like to write a message in Spanish I can forward it to them and
perhaps they will contact you.
Regards,
Pam

spanish -speaking MSA GROUP

2007-07-15 03:17:31

DOES ANYONE KNOW IF THERE IS A GROUP OF MSA PATIENTS WHO CORRESPOND
IN SPANISH? I LIVE IN BOLIVIA AND I AM TRYING TO GET MY DR'S AND
NURSES AND EVERYONE I COME INTO CONTACT WITH "HOOKED UP" TO A GROUP
LIKE YOURS WHERE THEY CAN ACCESS INFORMATION ABOUT MSA IN SPANISH.
IF WE CANT FIND A GROUP I GUESS WE C0ULD START ONE., BUT WHERE WOULD
WE GET AN INITIAL CONTACT LIST??
ANY SUGGESTIONS WOULD BE APPRECIATED. THANK YOU.
KATHY TAJA
DX MSA 6/00

Happy New Year

2007-07-14 22:16:55

Hi everyone,
I am finally able to keep my fluids in.. I have my salt intake up to
4000mg. and I have added more potassium. I am though having a time with my
neck and shoulders.. It feels better to keep the head down, but i know i cant
walk around like that. I hope this letter finds everyone doing better.
Anne, I am so glad you are back. My husband Jack gave me some exciting news
last evening, we have been invited as a guest to an presidential ball hosted
by George & Barbara Bush for their son George W. I am walking around the
house in my heels for the next 15 days so I will get use to them again.. My
balance is still a little unstable. My son is doing a lot better on his
seizure medication.. It seems he has more seizures while in school.. He feels
they are stress related. I hope everyone had a nice holiday.
Patricia

KathyT

2007-07-14 21:43:42

Hope you enjoyed Pigeon Forge, our oldest son is pastor of the Methodist
Church in Pigeon Forge. It is a beautiful place..
Enjoy, Ann from Soddy, TN

trip - WARNING

2007-07-14 08:08:33

Don,
It was since Nov, 92 as we have only had the minivan since then. You do not
have
to get all the snow out just enough to get the ites back on the pavement. They
had
plowed the main road, but not my street and when I went into the plowed snow it
raised the whole car up. I was in my fifties :o) I can still lift an eighty
pound
chuck onto a lathe. Can't run as fast as I used to though.
Take care, Bill and Charlotte

trip - WARNING

2007-07-14 04:13:19

Kathy,

Just remember on snow and ice:

Slow is not always best, you must have enough momentum to get up the next hill. Not too fast, but not too slow.

Best to go over the crest of hills very slow as there may be someone coming at you on your side of the road.

No sudden moves

4 wheel drive vehicles do NOT stop quicker than regular vehicles they only start better. PLUS most have a higher center of gravity and will tip over sideways easier (as a friend of mine found out). Blazers look funny upside down after flipping over a guard rail.

With front wheel drive cars a slight accelleration may pull you out of a skid, BUT hitting the brakes will put you off the road.

I think the reason behind the no chains on front wheel drive cars is the caliphers on the disk brakes catching the chains. Good radial tires work great on front wheel drive cars anyway.

Take care, Bill and Charlotte

how to make money at home

2007-07-13 23:43:46

What a great idea. Would you mind my asking the rate you charge?
Suzanne Grimmesey-Kirk, MFT
Quality Care Management
Voice: 884-1647
FAX: 884-1633
I earn extra money typing term papers and resumes for the local college. I
put up a flyer. I keep pretty busy during finals. Also the end of the year
for new grads going into the business world.

Re: how to make money at home

2007-07-13 19:03:01

I earn extra money typing term papers and resumes for the local college. I
put up a flyer. I keep pretty busy during finals. Also the end of the year
for new grads going into the business world.

trip - WARNING

2007-07-13 08:01:05

Driviing in snow is easy but if it is ice-that is different. Just drive
carefully. Born in Michigan! marilyn

Re: [MSA] small veins/

2007-07-13 05:36:45

Mary

Yes Ralph had bad veins, They were terribly hard to find and moved all over the place or collapsed. They did use a kid size syringe in his worse times.

They hurt him so many times trying to chase them down. It finally got to the place where I requested the head nurses do the needle stuff. It was pure misery for him.

This brings back one more memory that I would rather forget, but there you have it, I am trying to do all I can to help. Sometimes it hurts to think about it tho.

Love to you. Barb
[INLINE]

Re: [MSA] Kentucky group?

2007-07-13 02:44:22

yes . there is a group for Kentucky Please contact Judy and Bob Miller at
[502]253-9379 for information.

Re: [MSA] $$ and VA-Louise/Barbara Smith

2007-07-12 21:16:28

May the Lord bless you in the coming days. Signing all of those final
decision papers takes courage.
Barb in Arlington

Re: [MSA] Doctor of what? to Mary Ann

2007-07-12 15:21:42

Mary Ann,
It sounds like the current internist is being thorough. If your mother is
getting more food stuck in her throat, she definitely should have a
swallowing test in x-ray (Modified Barium Swallowing study WITH A SPEECH
THERAPIST PRESENT) to actually SEE what is happening. You and/or the
current speech therapist may even be able to go watch as the actual test is
being done. In any case, the current speech therapist can use the results
and recommendations to better treat your mom.
Personally, I think you're on the right track with this internist. Just be
sure a speech therapist is actually taking an active part in doing at least
part of the swallowing test. She/he can give your mom recommendations for
diet level, body postures, and exercises from there.
Rose

trip - WARNING

2007-07-12 08:39:55

Raymond Werre wrote:
Hey Bill,
how much younger were you then??????
Don

trip - WARNING

2007-07-11 21:47:00

Hi Bill and Charlotte,

Thanks for the info, I am really appreciate the infor about the tires and snow chains. I will check before we leave. I have never seen snow but only three times. Everyone's suggestions will help me a lot.

Thanks Kathy

ps. Dave's daughter has driven in snow before. I am grateful for that sense of security.

Re: [MSA] jbf's experience with violent dreams

2007-07-11 17:28:42

have not had any violent dreams at all , in fact, I have no dreams.

Re: [MSA] VA benefits

2007-07-11 11:08:29

Barb Smith,
Sorry, VA benefits also depend on WHEN you served. People who served only one
hitch in the late 50's and early 60's did not get veteran's benefits.
Take care, Bill and Charlotte

[MSA} Jerky legs and Sinemet

2007-07-11 09:22:55

Barb (in VA)

I have been to both Blacksburg and Christiansburg. Took some seminars at VPI. I also knew a couple of professors there back many years ago. We did some work together at Oak Ridge back in the 60's (before I-81).

Take care, Bill and Charlotte

trip - WARNING

2007-07-10 19:11:12

Kathy,
WARNING, some front wheel drive cars do not like chains!!!!! I think the
Caravan is one of them. Before putting chains on, I would check with the
dealership before putting chains on any front wheel drive car or van. I have
the Grand Voyager which is the same thing.
Keep a small snow shovel (we have a folding one) and some flares in the car as
well as a bag of salt or sand. I've heard that the traction mats can help get
out when you are stuck. However, the only time I ever got stuck in snow was
when the body of the van rode up on the snow and lifted the wheels off the
pavement. I used the shovel to get the snow out from under the car and drove
away.
Take care, Bill and Charlotte

jbf's experience with violent dreams

2007-07-10 16:11:55

Greetings All!
I just thought I'd share my own personal experience with the violent dreams.
I don't seem to have had the clear pattern of violent dreams that other
people have had. They do seem to increase when my other symptoms worsen.
But I certainly haven't had the clear REM Behavior Disorder that other
people have. It would be interesting to find out how conclusively REM
Behavior Disorder and MSA correlate.
Are there many other people on the e-mail list that don't have problems with
violent dreams? Just wondering.
Well, I hope everyone has a wonderful day. I'm taking the afternoon trying
to catch up on e-mail. And it's nice having a quiet day at home. (The kids
are at school, the wife is out shopping, the dog is asleep on the floor, and
I'm enjoying the calm!)
Regards,
=jbf=
John B. Fisher

Research at Mayo's ??

2007-07-10 11:18:39

Hi all. my brother died in 1998 of Shy Dragers and Mayo/s in
Jacksonville Fla did a biopsy and took brain tissure samples with
idea of getting a Grant for research of SDS. Anyone know if they
have started this reserach? By the way, was interested in the
postings re restless leg syndrome as he had it for years as did my
mother and grandmother.

Re: Thanks for information!

2007-07-10 05:09:48

Louise - Thanks for the information! Unbelievable - your husband is not
disabled because he was not disabled as a result of military service?? And yet
they pay for supplies, etc. We are trying to put affairs in order, but the more
I read, I wonder how in order we are??!
Elaine Grimmesey
For Elaine Grimmesey Veterans of any income may be accepted as patients in
LA. They are/were at least also given a nursing home subsidy in addition
to prosthetics (special wheelchairs , beds, support machines) meds, usually
generic , food , pump, bags, even special enemas and bedpads. There are
many regulations I cannot understand. Jan has been immobile and bedfast
more than a year but he is not disabled because SDS is not service
connected. Health power of attorney is needed to override guardianship ,and
adjudication of incompetence. Legal papers may or may not transfer from
state to state--even marriage licenses must be seal impressed originals in
some instances. For implementation of Jan's civil service pension for me
I'm told twelve copies of his death certificate are advised. Home deaths
are complicated beyond belief. Barbara in Texas has good advice about
putting affairs in order . I've much to learn. We are Medicare recipients
at 73 and 72 and Federal Retiree BCBS insured and even THAT is complicated.
Start with your local veteran representative at nearest courthouse or
Chamber of Commerce if you dwell in a podunkville.I know only how to reply
to sender and not how to eliminate lengthy RE-RE's . Do you?Duty calls.
Hopefully helpful, LA Louise
To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com

[MSA} Jerky legs and Sinemet

2007-07-09 22:31:09

Marilyn,
Thanks for your coments regarding sinemet and JLM.
Barb In Va

aspiration/reflux to Jean

2007-07-09 18:05:37

Hi John,
Thank goodness I can answer no to all of your questions, at least at this
time.
The only thing I have noticed while she sleeps is that there is a lot of
jerking going on and she seems to breathe more from her stomach.
Thanks to you and others, sleep apnea is something that I am very aware of.
Thanks again,
Jean

grateful again

2007-07-09 15:57:44

To the list,
Thank you to all who have responded regarding my sister Chrissie.
Keeping an eye on things and will keep you posted.
Jean and Chrissie

[MSA} Jerky legs and Sinemet

2007-07-09 00:51:04

Bill and
Charlotte,
Grundy is further back in the mountains down here. I'm in Blacksburg (exit
118 off
I-81S) in Montgomery county with C'burg as county seat. Va Tech is the main
"business" in B'bg while all the shopping and commerce is in C'bg (only a few
miles down the road). It's a busy and active community as most college towns
are. MAKe for good retirement centers.
barb

aspiration/reflux to Jean

2007-07-08 23:00:01

Rose,
Thank you so much for your invaluable advice. I do have some pepcid and I
will try that. Yes, her bed is elevated and I have been putting her head over
a steaming hot bowl of water with a towel over her head and that seems to be
helping.
I did see your previous post also with good information.
She also complains after having spaghetti sauce that it is coming up on her
so I guess it could be reflux.
We could get to see her PCP in about 15 days, so I will try and hold on until
then.
Thanks again.
Jean

Weather in USA Bill

2007-07-08 15:54:57

Anne,
We woke up this morning with an inch of snow on the ground. Don't forget our
handy little Michelle built the pergola with her trusty power saw :o) Walking
is a problem with the snow, especially when it gets packed down. We won't lose
much of it as it is only 26 deg (-3 to you).
How are you and your dad doing? How is Lorraine coming along?
Take care, Bill and Charlotte

aspiration/reflux to Jean

2007-07-08 09:23:14

Greetings Jean!
Let me also emphasize ... Acid reflux during sleep can indicate severe
obstructive sleep apnea. Does she snore during her sleep? Does she seem to
pause? Does she make a sound that sounds like and indrawn cough? Does she
wake gasping? Does she have excessive daytime sleepiness? If you answer
yes to any of these, then it's VERY important that she see a sleep
specialist. Obstructive Sleep Apnea (OSA) can be deadly. It often leads to
heart problems and strokes.
Regards,
=jbf=
John B. Fisher

Re: [MSA] Chicago group?

2007-07-08 08:38:44

Hi,

There is a lady in Chicago who was looking for enough interest to start an MSA support group. As far as I know they have not yet had a meeting. You can contact
Debbie Thomas at D3E3B3@... if you think you'd be interested in meeting or in helping her get something organized.

Regards,
Pam

Re: [MSA] $$ and VA-Louise

2007-07-07 19:00:07

Louise,
I strongly agree with Mary! You definitely have access to hospice and I would
recommend that you make that request through his primary care physician NOW!
We had Hospice for Gwen the last several months before her passing and they were
a blessing to our whole family. Please contact me if I can help in any way.
Don Summers

Re: [MSA] trip

2007-07-07 16:51:24

What a WONDERFUL thing to do. No, I don't think this will be a mistake.
More importantly, you seem to understand that you need to take things at his
pace. That's a hard lesson to learn (for both of you).
My wife, Jennifer, keeps gently reminding me to pace myself. She's right.
When I don't I fall apart. Never used to have that happen. But a nap now
does wonders. It's no longer a waste of time. It's a lifesaver!
And you never know. If *both* of you keep things low key, you might just
find it will help both of you. It's always nice to get away and have
wonderful bonding time. No matter how long you've been married.
Best wishes!
Regards,
=jbf=
John B. Fisher

Re: [MSA] trip-Kathy

2007-07-07 10:18:53

Go for it Kathy! Enjoy!

Chicaago group?

2007-07-07 00:31:58

who is it and wwhen do they meet

Re: Possible continuation of disability coverage

2007-07-07 00:21:48

Jim,
I'm a little out of my league here, but my guess is that Peg would
not be covered by the Marymount policy because she resigned from that
position and was not disabled at the time she left their employment.
If she "retired" from the University of Guam before the normal
retirement age because of her illness, she might be eligible under
that policy. As I understand it, the issue is when disability
occurs, not necessarily when the diagnosis occurs.
Carol & Rob

Re: [MSA] This n that and the other.

2007-07-06 19:05:57

have you tried your local Area on Aging agency for list of cheaper aides to
relieve you? I got one for $8.00 an hour here in Virginia for my Mom. it
was worth it to get a break once in awhile. YOU need a break it is obvious!
Take care. Marilyn in VA

aspiration/reflux to Jean

2007-07-06 10:58:36

Jean,
Sounds to me like it could be reflux related, esp. since it woke her up with
coughing. The "bark" could be from the acid irritating the vocal cords and
causing a change in the quality of her voice. Is she on reflux medication?
Do you elevate the head of her bed? With reflux, the feeling that something
is in the throat is possible as it can cause a bumpy area to form in the
throat. I'm wondering if the stool softener also relaxed the esophagus
muscles enough to allow the acid from the stomach to flow up into her
throat.
Since there's no temperature, I'd suggest going to an ear, nose, and throat
specialist and getting it checked out. If she's not on reflux meds and
you're away from your doctors, maybe call and see if she could start on a
non-prescription med. at bedtime (like Pepcid/Zantac)---just be sure it
won't interfere with her other meds.
Did you see the reflux post I sent recently about other things to avoid? If
not, let me know and I'll resend it to you directly.
Someone else mentioned dryness may be a factor. Maybe try a humidifier in
her bedroom.
Hope you find something that helps,
Rose

Possible continuation of disability coverage

2007-07-06 03:42:49

Carol and Rob,
You pose an interesting idea about disability coverage. Peg currently gets
SSDI. She was declaired eligible about 1995. Until late 1991, Peg worked
as a tenured professor for Marymount University in Arlington. Marymount
University had a disability policy. During that time she was diagnosed with
Parkinson's. Then she quit that position to come with me to Guam. In Guam
she worked as a professor for the University of Guam. She finally retired
from the U of Guam several years after the diagnosis was changed to
Shy-Drager. That was simple regular retirement with only five years vested
in the Guam Retirement System. Guam law seemed to say that Peg was not
eligible for disability retirement because she had a preexisting condition.
Are you suggesting that since Peg was diagnosed during the time she worked
at Marymount U, she would continue to be covered by the Marymount disability
policy? If so, it would be worth it for us to explore that possibility.
Peg and Jim from Guam
Was Bob employed when his illness was diagnosed? Was he covered by
any type of disability policy? If so, file a claim. If he's
receiving SSDI, there shouldn't be a problem in collecting. (I
say "shouldn't" because one of Rob's policies gave us a hard time -
we ultimately had to hire a lawyer and threaten to sue, but they are
paying now.)
Carol & Rob (who are off to Aruba for a week on Saturday, to escape
the cold and snow of Lexington)
********************************
*** Peg & Jim Taylor
*** # 29 Cruz Heights
*** Ipan-Talofofo, Guam 96930-4736
*** USA
*** 671-789-2307
*** Note: Guam is 15 hours ahead of
*** Eastern Standard Time (EST).
*** 14 ahead of EDT.
********************************

Kentucky group?

2007-07-05 18:30:54

Is there a shy-drager support group in Kentucky? If so, when do they
meet?

Re: [MSA] trip&gt; kathy

2007-07-05 16:16:23

GO!:)) SOUNDS FUN KATHY! I am glad I traveled when I did.
Where is this place in Tennessee?? Close to Ohio- sortof??
If u think the trip is what u need, u both talk with his doctor(s), and
u guys talk about it and plan, then U guys decide. Shoot if all ya do
is sit in the cabin, fine. Nice change of scenery, change of being in
the house, forces u not to do housework,
no sales calls at home to listen to- just something that u may cherish
forever. Bring lots of fluids, salt (?), BP cuff, food, blankies:),
pillows, meds, snacks, med supplies, cell phone, doc numbers, location
of nearest hospital (call them if u like), give some the route u guys
are driving, call a person at ur destination that u are
going out the door, bring a shovel and kitty liter, snow pants... Right
now
can't think of anything else we bring when we go to the state park.
OH! Fill ur car with gas the day before.
nancy m.

Weather in USA Bill

2007-07-05 10:33:16

The best and most beautiful things in the world cannot be seen nor touched
but are felt in the heart. Helen Keller
I reckon you need buses with doors both sides. Or, you could try Fordy's
driving down the b*****y middle of the road!!! :o)
Just cant imagine being frozen! Lovely and warm here now our heatwave is
over for the moment.
Kids should stick to ice rinks, much safer!!
Having a nice outside barbie on Sunday with family!! Of course unlike the
Fordy's we are not rich enough to have a pergola!! :o) So no risk of fire,
as we won't be sitting on the roof to have it !!:o). Well not anless the
bushes next to it catch fire. We like the old fashioned wood burning
barbie.
Sorry you can keep the ice. I would have to wear so many clothes I wouldn't
beable to walk!!
Love to both from Anne
cabs

Re: [MSA] small veins To Mary

2007-07-05 09:49:51

Hi Mary
Yes I have had a problem with small veins and arteries for many years. I
don't know if I had the problem before SDS. Don't remember having a prob
with vein finding before that though. My veins are also very fragile and I
get constant spontaneous bleeding mostly in my arms and occasionally in my
hands.
Love Anne
The best and most beautiful things in the world cannot be seen nor touched
but are felt in the heart. Helen Keller
how

Re: [MSA] This n that and the other./Mary Ann

2007-07-04 19:05:23

Hang in there.
I can now go to sleep with a smile on my face. That was a great tale.

My Ralph was a fisherman but he was not brave enough to go out on the ice
I have a nine pound trout on my den wall. Cassville, Mo. was his favorite place.It really gave him a hard time getting it out of the water. He was so proud. I heard many tales about the big ones that got away, but this one didn't.

Packing up all of his fishing gear was a heart breaker for him, but he just could not do it any more. Broke his heart to recognize that part of his life was gone. He spent many hours on the river bank. It was his favorite relaxer. When he began to get tipsy he also spent a lot of time in the river. I have seen him fall in and had to get help to pull him out. His bib overalls held a lot of water in the pockets, along with his coats.

He was just too big for me to pull out. Even the cold water did not scare him, but it did me. I was so afraid he would hit something on the bottom and cause a real problem. There were always some good strong fellows around to help. So many times I thanked the Lord for muscles other than mine. I threatened to tie a rope on him.

But now he is gone. Our grand kids say, " he is probably going fishing every day in Heaven."

Keep warm and stay off the river. I hear it is awfully cold up there.

[INLINE] Here is some sunshine for you.

Love Barb in Arlington

aspiration

2007-07-04 14:10:24

Jean;
Believe me I'm no expert, but I remember seeing a health tip, for a dry
spot in your throat that's causing coughing. They recomemded eating bananas.
This might be way to simple, but during the winter it is very dry here
indoors and it doesn't take much to get a cough. Mom and I both take
echinacea to combat aginst colds...so far the docs have no problem with it.
Mary Ann-

This n that and the other.

2007-07-04 13:21:26

Hi all;
Mary Ann here from way up north where winter stays 9 months out of the
year!!! If it wasn't for the 'Oley and Lena' jokes, there would be no
reason to laugh. Thank God for the Norsky's...Ha ha.
Elaine wrote: How do you who stay home full-time cope/supplement? You must
be quite creative - and must spend considerable time sorting through much
red tape re. medical authorization/utilization.
Were just barely hanging on with the skin on our teeth. Not only financially
but emotionally too. As some of you know from my previous ranting and
ravings!! There just is no support or help when your loved one is in the
Nursing Home and they need much more care than the Home can provide. The
more I bring up, things mom needs or changes to make for her, the more they
remind me....'We are not a one on one private care facility'.......You all
know SDS patients need exercise, and water therapy is a great for
exercise...but the home only offered it to mother once every three weeks,
for a half hour, as a recreation activity. So I take Mother to water
therapy 3 times a week for 45 min to an hour. Massage is necessary to
relieve her stiffness(she is not on sinemet yet). Don't ever even expect a
massage to be given in a Nursing home. I give her a half hour to 45 min
massage after water therapy. They only give them a shampoo and bath once a
week. So when you go into a nursing home your suppose to stop caring about
hygiene and the ---- with how you look....Do you think that would affect a
person state of mind? It brakes mothers spirit, and she doesn't even want
to eat in the dining room when she doesn't look good. My sister goes in
every weekend and shampoos mothers hair and styles it...I do it on the days
we are at the YMCA. Even though I give her 3 days a week at water therapy,
tomorrow I take her to the doc in Fargo. Tuesday I fixed up a new bathing
suit, out of an old black dress for her. It really is, with all the paper
work and errands, like a full time job. I really do love doing it, don't get
me wrong. It's just that if it wasn't for my husband, who is more
understanding than most, allowing me to take care of mother and not be
earning an income. I do feel the stress of the finical pinch we are in.
Pete being a carpenter, it being winter, and last February he had prostrate
surgery, and still needs a hernia repair job. Well anyway the kids are grown
and gone, but even if your not spending much, you still have that same
amount that goes for bills and expenses. I might be able to squeeze a
couple of days to earn something. The truth is, I don't think I'm mentally
stable to work for anyone right now. Way to much on my plate at this time.
And It is soooo cold. If anyone has ideas of making legitimate money on the
computer let me know.
Oh crap have I been pissing and moaning again. I guess there is just no one
else to dump on......... Sometimes you just have to dump or you might get
emotionally constipated. 'that sorta funny if not true'
Ya it's cold here in Minnesota.......McMurphy told 'Oley that the fish were
really biting out in the lake. Oley decides he's gonna go do some fishen,
so after being gone all day Oley gets back and it is already dark. How was
the fishing McMurphy says to Oley. Oley replies, I can't tell ya, cuz by da
time, I got a hole, chopped out in da ice big enouf fer da boat, it vas to
dark to see ta fish.
ta da....Mary Ann-MN

$$ and VA-Louise

2007-07-04 00:57:34

Louise:
Re your plea: "Jan's last days should be as comfortable as possible.
Help?"
Maybe it would be a good idea to check into his Hospice benefit. Hospices
will send out a representative to answer questions about insurance benefits
as well as timing of a hospice admission. I worked for three years as a
hospice chaplain (now am a hospital chaplain) and saw the wonderful comfort
care they provided for their patients and families. Most patients' quality
of life and comfort levels improve (at least temporarily) w/ a hospice
admission. And checking out hospice doesn't mean "giving up" but
recognizing that acute care medicine is no longer appropriate. And the "6
month" rule is really a guideline, particularly w/ non-cancer diagnoses.
The array of symptoms is the real criteria. The biggest mistake families
make is waiting too long to call hospice and then miss out on the great care
they give.
Also I think you all are trying to sort out the differences between POA's.
The word "durable" means that it doesn't take effect until the patient is
unable to act on his/her own behalf, and Medical Durable Power of Attorney
is the one naming a health care proxy decision maker. Some state also have
"Living Wills" - here in Michigan only the MDPOA is recognized. Other POA's
are for business matters and can be durable as well.
I am in the middle of figuring out financial things for my parents and
discovered an Elder Law specialist who knows the ins and outs of the
Medicaid system. Interesting the little known methods to protect assets and
maximize ones benefits. ML

Re: trip

2007-07-04 00:57:29

Kathy,
DO IT!! Rob and I are doing a good bit of travel and as long as you
feel you can handle it, by all means, go for it,
Carol & Rob

am because Dave and I booked a cabin in Pigeon Forge Tenn today for
Feb 18-24. I know it will be cold. we have made a special effort to
go places. We went to the mountains in June and October and really
enjoyed it very much. Some people have asked me wasn't I afraid to
take him off so far from home but I want him to enjoy life while he
can. We have never had an opportunity to travel until lately. I know
some days he won't be able to get out but we will have a comfortable
cabin to rest in.
<a href="http://explorer.msn.com"

Re: [MSA] trip/Kathy

2007-07-03 19:38:35

Go And God be with you both. Just keep in touch with someone all the
time. If you need help, it may be quickly.
Barb In Arlington.

trip

2007-07-03 06:28:56

Hey everbody,

A lot of you are probably going to email me and tell me how crazy I am because Dave and I booked a cabin in Pigeon Forge Tenn today for Feb 18-24. I know it will be cold. we have made a special effort to go places. We went to the mountains in June and October and really enjoyed it very much. Some people have asked me wasn't I afraid to take him off so far from home but I want him to enjoy life while he can. We have never had an opportunity to travel until lately. I know some days he won't be able to get out but we will have a comfortable cabin to rest in.

I hope I am not making a mistake. I want him to have some quality of life.

What do yall think, am I making a mistake?

Kathy T.

Re: [MSA] Pam's New Email Address

2007-07-03 00:25:46

Pam,

We are still waiting on our DSL line. Is the cable FAASSTT? We were supposed to have the DSL line by Dec 13th. It is supposed to be around 500 kb. I've hear the cable is supposed to be about 1 mb.

Take care, Bill and Charlotte

Re: [MSA] Disorganization, aides, chairs on wheels.

2007-07-02 19:57:56

Doug,
I had to cut four notches in the sides of the pads on the furniture dolly ($17
from
MSC and about $8 freight) to hold the chair in . I will put some clamps to hold
the
chair down also. Warning - the dolly has four crazy wheels so you must be
careful
to put a safety block to keep it from rolling back as the patient sits in it.
Also
when mounting the chair try to keep the feet inside the wheels to make it
stable.
I was trying different things since they wanted $400 for a factory made chair
and we
have two of these old kitchen chairs. Then I saw the dolly in a sale catalog
from
MSC (Manhatten Supply Company in New York). I have seen the kitchen chairs at
yard
sales for about $10-15. It can fit through a 19 inch opening.