Wiki articles

Jim,
Rob has had problems with bladder control too. Fortunately, Detrol
works fairly well for him. He currently takes 2 2mg tablets a day -
one upon rising (about 8AM) and the other at about 5PM. He has had a
few accidents in the past, but none recently. He takes both florinef
(3 .1mg tablets at bedtime) and proamatine (2 5mg tablets 3 times a
day - upon rising, at noon and at 5pm). He also takes Thermotabs
(450mg buffered salt tablets) 4 times a day. It's true that the
detrol works at cross purposes with the bp medication, but we've been
able to find a happy medium in Rob's case, at least for the moment.
One of Rob's first symptoms was REM behavior disorder, along with
sleep apnea. He's actually had obstructive sleep apnea for most of
his life. I think both his sons have it also, although they refuse
to be evaluated. I suspect his brother and possibly his sister have
it also, but they have not been evaluated either.
Have you tried raising the head of the bed at night to reduce your
night time urination? That helps keep the blood pressure from rising
so much at night, which in turn keeps the kidneys from working to
eliminate excess water to reduce bp. If that doesn't work, you might
consider a condom catheter. It goes on like a condom, and has a tube
that leads to a bag, which can be attached to the side of the bed.
Might beat sleeping in a puddle, or getting up every hour to hit the
bathroom!
We don't take Rob's bp very often - only if he's not feeling well.
He knows (as I'm sure you do) when it's falling, and compensates by
sitting down or squatting if he's out and can't find a chair. We do
know, however, from taking it upon occasion, that if falls at least
30 points going from sitting to standing.
Well, now I'm guilty of sending a long e-mail! Hang in there. This
disease stinks, but at least we have this wonderful forum to share
information.
Carol & Rob (Lexington, MA)

Bill,
We are approx 30 miles SW of Heathrow Airport which is very close to
Runnymede. Heathrow Airport is approx 20 miles due west of Central
London. I don't know of a Runnymeade as you spelt it. I will have to
get the map out. Runnymede is where King John signed the Magna Carta
in 1100 or maybe 1200, my history is not that good. There is also a
memorial to JFK there up on the hillside overlooking the River
Thames. The Runnymede I know is definitely not a city in fact there
are very few houses it is mainly open country on the edge of Windsor
and a town called Egham and the dreaded M25 motorway runs across the
eastern edge of it.
Did you get a look at the Lightwriter details I sent you. I saved the
scan into a Word document. If I scanned it again do you have a more
preferable format although I am not sure about word perfect !!
Dave & Chris

Carol & Rob,
I am glad to hear that Rob is still managing so well three years after
being diagnosed with SDS, and thanks for the response to my email.
I have found a few articles that linked Obstructive Sleep Apnea with
SDS. I was diagnosed with OSA about six years ago. After several months
on the CPAP machine, I was getting some relief but not nearly as much as
I had expected. My Doctor sent me to a nose & throat specialist who
recommended surgery. It seems that the main problem was that my soft
pallet extended so far back that it was almost touching the back of my
throat even while I was setting in an upright position. When I relaxed
while laying down it was completely blocking the airway. He performed a
uvula plasty, trimmed the soft pallet, removed my tonsils and adenoids,
and repaired a deviated septum. After I recovered from that, I had two
sinus surgeries over the following two years. I was so glad that they
had finally found something that was treatable and could possibly
explain the problems I had been having. The throat surgery was something
that definitely helped and I am glad that I had it done, but other
symptoms continued, and new symptoms continued to develop. My joy at
finding a cure was short lived.
I have been wearing Depends at night and sleeping on a towel and a water
proof pad for over three years now because of incontinence problems. My
Doctor sent me to a Urologist in Feb. 99. After several tests and
referrals from one specialist to another, they finally recommended that
I have prostate surgery, TURP, or what the urologist fondly referred to
as the roto-rooter. This surgery was in Aug. 99. It turns out that was
one surgery that I wish I had not let them talk me into, because in the
long run it did not help anything at all.
The Neurologist has tried to increase the dosage of Pro-amatine twice to
help my problem with blood pressure drops when standing. Each time it
has caused the discomfort from my bladder control problem to become much
worse, even during the daytime. Also, everything that the Urologist
gave me to help the bladder control problem, made my low blood pressure
problem worse. Currently I have stopped taking any medication for the
bladder problems. I take 15 mg of Pro-amatine when I first wake up in
the morning and 10 mg about 4 hours later. I am taking 900 mg of salt
tablets three times a day and 400 mg of motrin four times a day. In
general my blood pressure stays low until about noon, around 100-120,
and stays around 150-170 during the afternoon. It drops anywhere from
40 to 80 points when I stand up, depending on the time of day and the
amount of activity. If I take the third dose of Pro-amatine in the
afternoon, my BP goes up to 200 and I start having discomfort with my
bladder. (Feels like I am going to wet my pants, even immediately after
going to the bathroom) At times this has got so uncomfortable as to
almost be painful. At least with the blood pressure drops, I can set
down right quick and get some relief right away.
I guess I should not write such long emails. I have noticed that other
people keep apologizing for not keeping their messages shorter. I have
been intending to set down and start a journal with a timeline of all
the different problems that I have gone to the Doctors with over the
years, but that would definitely be too long for an email. However, I
am interested in reading about the experiences of other patients with
SDS.
Jim Parsons - Arlington TX

Good thinking.
I just wish there weren't so many people thinking of me when they find
out how to make money fast on the internet....
Doug in Greenbelt, MD USA
PS Thanks Pam and John for the information on Ataxias.

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

Click here: Wheelchair Travel & Accessible Tourism
For those looking for trips for Wheelchair patients, try this site.
Barbara Smith

Hi MaryAnn, I found these links. If you get to a classified ad page for
RVs, look for a search button and just type in Wheelchair or Handicap and
you'll find more hits.
http://www.rvonline.com/single-ad.asp?Recnumber=1782
http://www.rvonline.com/single-ad.asp?Recnumber=2473
http://www.rvtraderonline.com/adsearch.html
http://www.geocities.com/Heartland/9268/access.htm
http://crestwoodrv.com/handicap.htm
http://www.10000rv.com/main.htm
Good luck!
Pam

Anxiety, depression widely undertreated
NEW YORK, Jan 15 (Reuters Health) - Most adults who
have anxiety or depression do not receive appropriate
care, despite available treatment for these conditions,
study findings suggest.
Such psychiatric conditions "are common and have a
substantial impact on functioning and quality of life,"
according to Dr. Alexander S. Young of West Los Angeles
Veterans Health Care Center, and colleagues.
"The main problem is identifying those in need, offering
them appropriate care, and helping them accept this
care,"
the researchers write in the January issue of the
Archives
of General Psychiatry.
The investigators studied data from a national telephone
survey that identified 1,636 adults who probably had
depression or anxiety disorders, based on a brief
interview.
During a 12-month period, more than 80% of survey
participants had seen a primary care provider, and 19%
saw a mental health specialist. Less than one-third,
however, had received appropriate treatment--defined as
having received either suitable medication, at least four
sessions of counseling, or both.
For example, only 31% of participants received any
counseling at all, and only 17% received four counseling
sessions.
"Overall, poor-quality care (defined as no care or
inappropriate care) was quite common," Young and
colleagues report.
The researchers found that income and having health
insurance were not associated with the likelihood of
getting
appropriate care. Factors that did seem to influence such
care included gender, ethnicity, age, and years of
education. Women, whites, and people aged 30 to 60
were more likely to receive appropriate care than men,
non-whites, and younger or older respondents.
Among those with poor-quality care, only 31% said they
needed such services, Young and colleagues note, even
though they had symptoms of depression and/or anxiety.
The authors suggest that public and patient education
efforts could help people with symptoms of these
disorders
recognize the availability of help and increase their
likelihood of getting it.
Young's group suggests that because more than three
quarters of those who received poor-quality care had seen
a healthcare professional during the previous year,
primary
care providers may serve an essential role in identifying
patients with symptoms of these conditions and help them
receive care.
These providers "carry the burden of recognizing cases
among patients not presenting for psychological
treatment," the report indicates.
SOURCE: Archives of General Psychiatry 2001;58:55-61.
© 2000, Reuters Health Information Services

Voter turnout rates reflect income, health disparities
By AliciaMarie Belchak
NEW YORK, Jan 15 (Reuters Health) - People living in
states with the highest disparity in voter turnout
between
the rich and the poor also have worse self-rated health,
researchers report.
Investigators at the Harvard Center for Society and
Health
in Boston, Massachusetts found that disparities in voter
turnout across socioeconomic groups predicted health
self-ratings. The findings are reported in the January
issue
of the American Journal of Public Health, journal of the
American Public Health Association.
People who lived in the most unequal states compared
with those in other states experienced a 30% to 50%
greater risk of rating their health as poor or fair with
each
drop in income level.
"If you live in a state with higher income inequality,
then
your health on average is worse than if you live in a low
income-inequality state," said study author Dr. Tony
Blakely, who is now at the Wellington School of Medicine
in
New Zealand. "Put another way, the nature of the society
you live in affects your health over and above your
personal
circumstances."
For the study, Blakely compared health data from 1995
and 1997 with voter turnout records for the state
elections
of 1990, 1992, 1994, and 1996.
Blakely discovered nine states in particular had the
highest
voting and income inequality--West Virginia, Georgia,
Virginia, Kentucky, Texas, South Carolina, North
Carolina,
Tennessee and Alabama. States with the second highest
inequality rating included California, Florida, Illinois,
Louisiana, Massachusetts, Michigan, Mississippi,
Missouri, New Jersey, and New York.
The great divide between rich and poor in these states
translated into low voter turnout among the poor, Blakely
said, and lower health ratings. People living the nine
most
unequal states had 54% greater odds of reporting their
health as poor or fair than people living in the 19 most
egalitarian states. That disparity hit hardest among 45-
to
64-year-olds, the report indicates.
"The wide gap between the assets of the rich and the poor
leads to a corresponding polarization of the political
interests of groups in society, which is reflected in
diminishing levels of social trust and reduced spending
on
social goods that benefit all--like basic education and
healthcare," Blakely said.
"Inequality is more than just income inequality," he told
Reuters Health. "Health varies by states in the US, and
that
variation is strongly correlated with how unequal each
state
is."
The growing differences between socioeconomic levels
need to be addressed before the problem worsens,
Blakely advised.
"The results (of this study) suggest that we cannot
ignore
the structure of our society," he said. "Indeed, the more
unequal we allow it to become, the worse it is for all of
us."
SOURCE: American Journal of Public Health
2001;91:99-104.
© 2000, Reuters Health Information Services

Mary Ann,

I'm sure that the people who install car lift seats also install them in RV's. Barbara Smith may have one in their RV. My uncle has some sort of lift in his for my aunt who has hip problems.

Try:

http://www.bruno.com/

http://www.crescentvans.com/

Laurie,
Have you tried using a picture board (sometimes actual photos of everyday
objects are best--like a toilet, cup, food, etc.) or an alphabet board with
the letters of the alphabet printed in large, black marker for her to spell
what she wants (or maybe at least get the first letter out). Can she use
gestures or point to what she needs? A few (10-20) gestures to get across
basic needs (bed, toilet, eat, drink, etc.) may be helpful. If you try a
picture or alphabet board, just don't put too many choices to point to close
together and sometimes only 4-10 pictures on one page is just right (so the
choices aren't overwhelming).
Since you had a speech therapist already, you may have tried some of these.
Just some thoughts....
Rose

With all that is going on in your life, it is so kind of you to write to me. It is hard to believe that any place for her could ever be better than the one she occupied so well: right next to me. Debbie

Gail: Thank you for the comment. I will forward it to Kate for
encouragement. Yes, I think she is on the right track for bridging the Gap
between doctor and patient. Judy

Hi all:
I would like to know if there is a web site, where they sell handicap
equipped RV's. A few years ago one of my sisters was looking into getting
one for mother. We took a 30' Scotty(I think that was the model, it had the
dog on the side of the RV)with a Dodge diesel engine, form MN to MN in the
fall of 99'. Mother could step up into the RV, but it was very difficult.
Well any way, I would like to see the RV's that have all the convenience
needed for a wheelchair bound passenger. I do know you can have them custom
made, I don't want that. I want to see what is already out there.
I'm hoping someone has already been there and done that. There are just way
to many places to check out....and once you get there they really don't have
handicap RV's.
Thanks
Mary Ann-

Debbie,
I'm so sorry to hear about Mrs. Beasley, but you made the right decision. I
just hope she gets to meet my 5 dogs that have left me during my lifetime.
I've never allowed my 3 current poodles to take any of the other 5's place
and will always remember how much I loved all 5 and just how good they were
to me. She is in a better place and will be waiting there for you someday.
Take Care,
Judy

to Gert
We live in Johnstown
Jane & Dave

Dave,
Up until a few months ago, she used to play games on the computer, but she
cannot control the mouse or keys either. She watches satelite TV a lot and we
get out when we can. If we get a warm day in the next three weeks, we will go
to the National Zoo and see the Pandas. She enjoys seeing the grandkids also.
We are looking for a large key keyboard presently. Doug suggested a large
trakball (possibly made for children, but I have not found one yet.
Where are you in the U.K.? Herndon where we live, is the sister city to
Runnymeade in England.
Take care, Bill and Charlotte

Thanks so much. I have two other dogs -- 14 and almost 14 -- and having
dogness still around helps more than I would have imagined. I love them
dearly, but neither is the soulmate that Beas was. But I think they miss her
terribly, too. She filled me with joy. Debbie

I know how you feel about the loss of your wonderful comapnion. We have
two dogs, on 14 yrs. and one 6 yrs.
They have been a part of our life for a long time and we just love them
tenderly.
I want you to know that I feel your sorrow very much as we lost a dog 2
yrs ago.
We have been there and felt that loss.
Ann from Soddy,TN

Carol and Rob wrote: "I know
that I don't want to look back at these years and think that we could
have had more fun, if only we hadn't been waiting for the end."
You got it right. Debbie

John & Terri,
Wow! Good for you. Rob and I will be waiting with baited breath to
hear how the treatments work. Please keep us posted.
Carol & Rob

I wish you luck and love and all the best ... go for it ... let us know how it all goes ....

cheers

sheila

Jim,
I can't tell you which of the MSA flavors is most common. What I can
tell you is not to believe the 7 years. My husband Rob (now age 54)
was diagnosed almost 3 years ago with MSA. He, too, has the MSA-A,
SDS variety. He too had various symptoms for several years before
they were connected and a diagnosis made. He has progressed, but
with the help of lots of medication, he is still mobile and still
able to participate pretty fully in the activities of daily life. We
travel (just got back from a week in Aruba), dine out, visit friends,
go the the theater and to movies, etc. He uses a CPAP at night due
to sleep apnea, but doesn't use any other assistive/adaptive
devices. He has dizzy spells, tires easily, and some days just needs
to rest.
We also wonder how much time is left - both until the symptoms get
debilitating and until the end. But it doesn't help. We've decided
to do the most that we can with whatever tme we have. Sometimes its
not easy to keep a positive attitude, but we both work at it. I know
that I don't want to look back at these years and think that we could
have had more fun, if only we hadn't been waiting for the end.
So, take all that with a few (at least 4000) grains of salt, and keep
on LIVING your life.
Carol & Rob
Lexington, Massachusetts (where today it snowed, rained and sleeted!)

Yikes!!! I can see how that would happen, the heart probably slowed down to much and his body couldn't keep that blood pressure up.

My neuro was referring to some of the heart meds which are actually similar in composition to seizure meds. They are not as strong as seizure meds. I was kind of surprised as I didn't know the heart meds were like seizure meds and that spasms of the heart were a type of seizure.......... I wonder if it is damage to the hypothalamus and that is what is really seizing.

later and hugs,

cindy

We sure were lucky--I feel privileged. Debbie

Hi Nancy,
This pamphet is a few years old and I'm sure there are more centers than
those listed that now do the genetic test for DRPLA. Contact the National
Ataxia Foundation naf@... for a more up to date list.
Hugs.
Pam

I did not have any other choice with my machine. I decided it was better
to be safe than sorry. I did not know the first thing about fixing it.
That virus went into everything and then replicated itself.
So, please hold her hand and tell her it is all for the best. Then keep
the virus checker on at all times. Be sure you get an estimate before
you go in for the cleaning out. They had to go into the bare bones and
start over. Of course it may be different with mine. This is a new
machine that I bought just a few months ago. But I had a lot of stuff on
it. Was able to make copies of everything I wanted to keep from files.
It got in between the time I updated and then updated again. Now I am
doing the update every day and scan as I am on the computer through the
day.
Today I am reloading all of my goodies that I had taken off. E-mail
addresses were the biggest problem. Now I am keeping a running record
of those in a notebook.
I guess the best thing to do is keep a back up every month or so. Have
to learn how to do that with the floppies.
So, here I am back at the keyboard having more fun than a human ought to
have, but I love it.
I depend upon this "toy" since I am not too good on the '37 typewriter
that Ralph always used. It is in the closet. Waiting for someone besides
me to play with it.
Take care and have a lovely evening.
It took all of my little images too. Have to get some more in a day or
so when I get some more loafing time.
Barb in Arlington. Tx.

Hi Nancy,
Yes DRPLA is a form of hereditary ataxia. There is a genetic test for it so
you can find out for sure. I'll send a pamphlet on genetic testing for
ataxia separately.
Hugs,
Pam

Dear Jim,
The time of your diagnosis and your symptoms are almost identical to my
husbands. I too, have the same questions you have. He has been loosing his
balance more, but is still able to work. I wonder how long he can keep this
up. We noticed slight balance problems 2 yrs ago when his tennis game went
to pot and he quit playing. What is MSA-A? Is that the one with ataxia
symtoms? I have not heard that the progression in that type is faster, but
am interested in knowing.
Jeanie

evening. Dad has made choices regarding his care, and Lita is
respecting those choices. The doctors can do no more for him, and
told
now. Please continue to pray for all of us in this painful time.
I will continue to keep you updated. Smiles and hugs, Diane

Hi Gang:
Terri and I are going inactive for a while -- at least three weeks, maybe
longer. I am going (are you sitting down?) to Venezuela for treatment of my
MSA.
I know what those of you who saw the movie Man in the Moon about the life
(and death) of comedian Andy Kaufman are probably thinking. And I suppose I
am as desperate as Kaufman was with his cancer. But any similarity ends
there. I'm not going in search of a mystical healer but a legitimate doctor,
a neurochemist and neuropharmacologist who has spent his impressive career
outside U.S. neurological establishment and who takes a different approach (I
don't know quite whether to call it unconventional or experimental or both)
to neurological (and auto-immune) diseases.
I learned of this doctor from another patient of his from the Washington
area who he is treating successfully for myasthenia gravis, another (but very
different than MSA) incurable neurological disorder. I have been
corresponding with him (by fax and e-mail) for the past three months and
talking to my doctors about him. To sum up, it turns out the thinking of my
doctors closely parallels my own: what have I got to lose? My neurologist
(at Johns Hopkins) has volunteered to review the impressions and treatment
plan of my Venezuelan doctor as we proceed and give me his opinion. The only
real downside (aside from substituting a couple weeks of Caribbean weather
for Washington weather, and of course not being able to see the fruits of my
tango instruction at the inaugural balls because we're leaving Thursday) has
been the discomfort of having to go off all my meds (except for OH) which I
have been doing for the past couple weeks on a schedule we negotiated
(actually he dictated and I reluctantly but eventually capitulated).
This doctor isn't promising me anything, except a comprehensive
diagnostic exam. He's been very straightforward saying he doesn't know if he
can help. (If he claimed he definitely could, I probably wouldn't be bothered
going.) He's familiar with MSA but I do not believe he has ever treated
anyone with it before. (To tell the truth, I didn't have the chutzpah
(apologies for my goyim spelling) to ask.)

I gave some thought to offering to keep you all abreast of what I'm
doing, or of what's being done to me, but I doubt I will be able to do it.
As I taper off Sinemet, I'm losing all control and my laptop keyboard is a
bigger pain than the standard desktop. If any of you hard corps types can't
wait for my return for a report, send me a note and I'll try - no promises -
to send you a progress report.
If you curiosity is piqued, my Venezuelan doctor has a web site that will
give you a window on what he's all about. It's www.lechin.com . His name is
Fuad Lechin.
Wish me luck!
John Moller⦠heartbroken not to be able to cheer on "W' in person Saturday on
main street (that's Pennsylvania Avenue) in our Nation's capital.

I was finally diagnosed with Shy-Drager Syndrome in Aug. 2000, but in
hindsight I have had all of the symptoms for the last five years at
least, probably longer. Everything has gotten much worse over the last
couple of years and seems to be getting worse at an increasing rate. I
think that I have probably read about every web page that exists dealing
with SDS and MSA. I have been reading all of the email from this group
for the last month or so, and periodically before that. Most of the
questions I originally had about SDS have already been asked and
answered in the messages here.
My symptoms are all of the MSA-A, or SDS form. Is anyone in this group
aware of any studies that would indicate if one form of MSA is more
common than the other two? Do most people have a combination of two or
more of the forms of MSA, or just one?
It seems like there are a lot of messages here about feeding tubes. Are
feeding tubes eventually needed by most MSA patients, or just for some
types of MSA?
If I am interpreting it correctly, the web page for the National
Dysautonomia Research Foundation (www.ndrf.org), states that the
prognosis for those with MSA-A is worse than for those with the other
types of MSA, as far as life expectancy is concerned. Has that been the
experience from this group?
After reading everything that I have been able to find, my initial
reaction was "how many of my remaining seven years have I already used
up?" It looks like the consensus here on that question is that each
case is different and that the life expectancy of 7 years that is quoted
in several articles should be taken with a grain of salt (or at least
4000 mg of salt, :o)
Jim Parsons, Arlington TX

I HAVE BEEN POSSIBLY DIAGNOSED WITH A MOVEMENT DISORDER CALLED
D.R.P.L.A.
IT INVOLVES THE RED NUCLEUS. MINE IS VITURALLY GONE/ EXTREMELY
ATROPHIED/NULL.
I THINK IT IS A A TYPE OF SCAII /ATAXIA.
PLEASE SEND ME INFO ON IT. -MEDS, TESTING CENTERS, ECT. IT IS EXTREMELY
RARE.
THANK YOU
NANCY MULLEN
mailto:ds401@...

There is a relationship in dry mouth and denture problems. May not be
problem but be aware. Sometimes dry mouth goes along with dry eyes.
Salivia helps maintain healthy teeth. If someone's teeth suddenly go
bad, it is sometimes a medical problem, unlike decay over the years.
Donna

Dawn's driving me crazy, she misses you guys so much she calls me
twice a day to read her my bulk e-mails.
Sorry to about Debbie's dog, Dawn lost her beloved 13 yr old
beagle "Buddy Wilson" just last month. She and I so understand your
attachment to your pets. They are furry little people. I have 2 cats
Romeo & Juliet. Well Romeo weight over 20 lbs, he most likely
outweights some of your dogs. They rule the roost..
Dawn's computer is still down, Barb I think she is gonna have to
break down and have hers professional fixed also. $175. WOW! Dawn
doesn't like spending money...she'll hate that!
Watch for her to come on line, we need to throw her a welcome home
party!
Celeste

I know all about Buddy. Dawn and I have communicated about him. She was one
of the people on this list I aimed my email at. Hope she is up and running
again soon. Debbie

Bill,
What does Charlotte do during the day. What are her interests ? Chris
used to be very good with crafts used to dabble in water colours etc
but now these things are beyond her. I bought this PC hoping to
rejuvinate an interest but she finds it difficult to control the
mouse. Any ideas.
Thanks
Dave & Chris

Hi Barb, Your computer savvy is far greater than mine and I would like to know more about money for caregiver assistance.. Is there any reference to educational TV programs on basic nursing procedures, lay level videos , even library or talking books on invalid necessities? Couldn't "compute" it and think TV a perfect medium--worth a snail mail to powers that be. LA Louise

Hi Vera,
I'm doing fine, keeping myself from trying to do everything at once and
remembering things do wait, once in a while anyway. Right now my reading is
slow as when I sit down to read in afternoon, I doze off so its not going as
fast as it use to.
Warren's b/p is dropping again the last few days when it was doing pretty
well. He's really weak too and I'm pushing fluids to keep him from becoming
dehydrated. Our aide pushes water when she's here with him. Warren's been
on a whole proamatine 3x a day for quite a while now along with 4 Florinef.
He's also on adalat for balancing the b/p when it gets too high. He's also
taking 2 potassium pills at breakfast as his last b/p showed it was lower
again. Has to have blood work done this week to make sure its not too much.
I think I wrote you that his eyes are troubling him a lot. We see a new
opthamologist Thursday to see what he says, and then his Neurologist next
week.
I wonder sometimes where the time goes as we don't really do anything, but
now believe its the Dr's appts. that makes it fly. Ha, Ha.
Hope this finds you well and hanging in there,
love, Mary S.
p.s. Am going to start using Mary S as there are two or more Marys now.

Aida,
Medicare will buy a hospital bed. The doctor just has to say that it is
medically necessary. Craftmatic beds are not built as well as hospital beds.
What your doctor is saying is that the heart muscle is fine. The SDS or MSA
just fouls up the control mechanism which does not give the body the correct
signals. Therefore the problem is all in the brain. It does not pay to worry
about the brain disorder, since worry causes stress and dopamine to be used up
faster and will make you feel worse. Do what you can and when you can.
There are cheaper places to live. However, I realize (having grown up in the
Washington, DC suburbs) that living in or near a big city does have advantages.
We are staying put because of all the grandkids, even though the house is not a
top choice for handicapped accessibility.
Take care, Bill and Charlotte

Thanks, Mary. I posted because there are a number of people on the list who
have asked about Mrs. Beasley recently. I appreciate your thoughts. Debbie

Ran across some of these articles in my morning Ft. Worth Star
Telegram..
May be of some help to some folks.
Barb
http://search.netscape.com/google.tmpl?charset=UTF-8&search=$125+million+availab\
le+for+caregiver+support

Popular Web Sites for " disability travel"
Search Results 1 - 10 Ranked by Popularity
SEARCH RESULTS
1. Disabled Travelers' Resources
Travelers with disabilities have been heading off to Europe in
ever-increasing numbers. If you're planning a trip, go to whatever countries
your heart desires. Then find good
http://www.ricksteves.com/tips/disabled.htm
2. True Trip Travelogs offers travel tourists tourism destination voyages
journeys
True Trip Travel brings you closer to your destination! Offers free web
pages, travel tips, travel guide and more!
http://www.truetrip.com/travelogs/Disabled_Travel/
3. Welcome To Access-Able Travel Source
Travel resources for people with special needs. We have information about:
travel with disabilities, mature travel, disabled magazines, access guides,
accessible transportation,
http://www.access-able.com/
4. Disability Travel and Recreation Resources
This site is dedicated to offering assistance for persons with disabilities
to locate accessable travel informaition and destinations.
http://www.eskimo.com/~jlubin/disabled/travel.htm
5. TASC's DISABLEDTRAVEL.COM
For TASC Travel Adventures go to www.tascnet.org TASC brings you MORE Travel
Resources!! Travel Stuff Disability Stuff Web Stuff Other Stuff TASC Travel
Adventures Free Talking
http://www.disabledtravel.com/
6. Australian Disability Information
provides information and resources about intellectual disability to people
in Western Australia. The website allows people to search our catalogue and
also contains links to other
http://www.vicnet.net.au/disability/aus.htm
7. Disabled Travel - JourneyQuest.Com
The leading online resource directory for Disabled Tours and Special
Interest Travel featuring over 1500 specialty tour operators, cruise lines,
travel agents, and accommodations
http://JourneyQuest.Com/disabled.html
8. Global Access Disabled Travel Network
Global Access Disabled Travel Network is the ultimate information resource
for worldwide disabled travelers
http://www.geocities.com/Paris/1502/
9. Physically Disabled Travel Links
- An international resource newsletter for people with disabilities. Unlike
any other newsletter of its kind, The Able Informer offers you straight
forward resource information
http://www.casto.com/resource/physical.cfm
10. Medical Equipment International Advertising Service - Medical EquipNet
Medical EquipNet is a medical equipment emarketplace for international trade
of new, used, refurbished, or surplus medical equipment and related
services.
http://www.solumed.com/

Hi Jill,

Go to http://www.access-able.com
Click on either Text Only or Graphical
Click on Travel Agents near the bottom of the page.

I'm sure you'll find a suitable agent from the list. That site is a great resource for disabled travel.

Regards,
Pam

Hi Barbara,

My heart goes out to you and Dianne. I know how you feel and what you are facing. It takes a lot of strength to do what our loved ones request, even if it hurts us. I know you are doing the right thing. I feel that a person has the right to decide how their last days are spent. I admire you and your family for granting his wishes.

MY prayers are with you, Kathy t.

Hi everybody,

I remembered, a few weeks ago, where some of you were taking clonazepam for sleep. I wanted a drug that would not harm Dave in any way. I ask for this drug to be prescribed because I thought it would be good for him.

I hope I've done the right thing. I read on the infor sheet that the drug that it is also used for movement disorders. I will let you know tomorrow how it works.

Thanks Kathy T.

Have you tried an internet search under travel agencies in the USA---maybe
something through AAA?
Rose

Thanks, Mrs. Beasley and my mother were two being I really, really trusted in the world and you cannot say that about a lot of people/things. Losing them is like getting pushed off the ship. I know things will be OK at some point. They are just not good now. Debbie

Thanks, Bill. You've made very clear the distinction between private and
public activity. Of course, there are things allowed (or not allowed)
publicly that many deplore and of course anyone has the right to try to
change things, meanwhile abiding by the law or accepting the legal
consequences for violating it. After all, that is how things change.
Often, people don't seem to understand that their actions or words are
"forcing" their views on others because their actions or words are
well-meant (just limited in perspective). Sometimes the actions or words
are not well-meant. Either way, the rights of others are not respected.
Jane

Hello: Been away for a while. Bill is doing okay. He's spend January
getting more tests. No change. I just wish doctors were more explicit. I
still don't know what a cardiologist means when he says "His heart is okay-
except for the Shy Drager." Bill hears it as his heart is okay, and moves
on. So many of you seem to know the exact results of medical test. Any
advice on how to get the specialists to be more explicit. Our family doctor
gets the reports, but he doesn't want to worry us. Bill's neurologist tells
him "Don't read too much on this condition. Just live each day ."
Any suggestions are welcomed.
Also, we have had the bed raised 6-8 inches as recommended. I can't sleep
like that any more. My ankles get swollen. Twin beds are too small. Any
suggestions. Someone suggested a Craftamatic bed, but before I spend the
money for it I would like to know if it's works for SDS patients. We don't
have an extra room unless our son moves out, and given Manhattan rentals I
don't see that happening soon. Any suggestions.
Aida and Bill

Hi all,

Regardxing a recent discussion about the merits of cranberry juice.I just wanted to say how good I have found cranberry juice. Both my doctor and a visiting continence nurse recommended it as they believe the research which maintains that bacteria will not adhere to the bladder wall if it is used.I had 4 UTIs in 3 months and no matter how careful I was I seemed to get one UTI after another. I have taken two glasses a day for several months without contracting a further infection. It may be a coincidence, but it seems it work for me.

Jill Lucas

My carer and I have been looking for a firm that specialises in offering holidays for wheelchair travellers. It is easy to sort a holiday if you want to blob round a pool all day or you want self drive. I was in the U.S.A. two years ago (when only an occasional wheelchair user and I could get on and off a coach). The U.S.A did seem to be ahead of Europe in disabled legislation and provision. Do any of the U.S.A. members know of a travel agent, specialising in this type of provision, who I could contact on the Internet, possibly offering holidays in the U.S.A?

Thanks,

Jill Lucas

Thanks, John. A service dog plays a special role -- sounds as though you
will rescue each other. Debbie
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Hi James,

Thank you for your help. I called the home health nurse this am. she will contact the doctor for sleeping pills and something else for pain. I will try your suggestions. Take care of your self and I hope Peg is doing well.

Thank you Kathy T

Greetings Debbie!
My heart goes out to you. Yet, it is clear that you had a wonderful
relationship with Mrs. Beasley. Yes. We should never forget the Mrs.
Beasleys of our lives. What a wonderful tribute you wrote.
Since developing this disorder, we rescued a dog that I am now training to
be my Service Dog. Once again I am reminded of the joy and depth of the
relationship that develops. All through my childhood, my dog and I were
side by side. Remember those relationships fondly. More will come. But
each is a true treasure.
Regards,
=jbf=
John B. Fisher

I face everyone again with unbearable sorrow -- this time to report that I let my dog, my best friend, Mrs. Beasley, go this morning. I don't even know if it was the right time. I do know that she had endured enough and that what was around the corner was even worse. The nagging question whether it was the right time will stay with me, but I think that if I had let her continue, the feeling of having put her through anything more would stay with me -- there is no winning.

Mrs. Beasley came into my life after I lost a baby in my 5th month of pregnancy. After spending a week in the hospital (almost dying myself), Donovan took me to an animal shelter in Boston. There I found my baby: Mrs. Beasley. She was around 3 months old and her tail curled at the end like a pig's. I left that day with the cutest dog in the world and the one that would change my life forever -- (also, I found Otis there that day-- the subject for a different email).

We had a great life together. We rarely left each other's side. All of the time I thought I was taking such good care of her -- who could be more devoted to anything than I was to the Beas. But I recently came to realize that SHE was taking care of ME all the time. Through the years and throughout her illness. She never gave up that job. Even this morning she looked around for me when I left the main room for a moment. She took such good care of me. She was there when I went to NY to turn off my mother's respirator. And she was at the funeral. By my side.

Mrs. Beasley has taught me about trust and deep, deep love. And about living. What would have been mundane, daily routines (barn chores, picking the kids up from school) were adventures. She lived for them. And I learned to, too. My time in the barn in the mornings was wonderful only because she was by my side -- and I can say that about everything. Nothing was bland. She enriched my life in this way.

My relationship with her never changed. It never developed and evolved into something the way it does with people. But that doesn't mean it didn't get better. It just set in more and more. The solid love, the unending devotion, the ever-present brown eyes -- they are all in place. I promise never to forget.

She was my best friend, my baby, my sister, a part of me. Anything I did for her, she would have done for me. Please remember the Beas.

I am including a picture taken this summer of us -- one of my favorites. I ask that no one take her photo to make some rainbow bridge thing -- it would kill me to see her like this. Just remember her here, on earth, in my arms, and me in hers. The way she left. Love, Debbie

Wow! This Kate sounds great. Wouldn't it be terrific
if we all had access to someone like this. Perhaps
once everything is in place, you can share the
information that isn't specific to Oregon/Washington
location.
Hey, Tom Burt, whadahya think? Can we get something
like this for Georgia? Who would we have to contact,
what would we have to do-any ideas?
Gail

=====
Gail
gsouthwick@...

Thanks to the efforts of Gary Huddelson, Indianapolis had our first
SDS meeting! There were 4 familys represented. Huddelson's, Fox's,
O'Neill's, & Rin W. We had great discussions from everyones views.
Patients, Caregivers, Spouses, and childrens. etc... We all had a
chance to speak. The biggest concerns was for caregivers, getting a
break from their routine relieved by a quality caregiver to replace
them so can take a break with a peace!, ie; health aids, and medical
asst vs a neighbor, family or friends. Because there are so many
progressive medical concerns with SDS patients. It seemed to be a big
problems for all 4 familys at one time or another. So we were able
to swap telephone #'s of caregivers we had found. We also dicussed
each 3 patients there prior jobs and possible connections in
professions. We had an electrican, chemist and a dental asst/practice
administrator. We discussed that 2 had worked with copper and one
had been overdosed on estrogen and testosterone. Some type of toxic
exposures we noted. We also dicussed ethnic groups and how the
disease has not affected Africa Americans as much as Non African
Americans. And someone brought up they read it is also effects the
highly intelligent brains more often. I had never heard this before,
since I have been diagnoisised SDS it was the first I heard this
theory, but I'll accept that (hehehehe). We Hope to meet once a
quarter our next meeting is scheduled for April 14th, location to be
annouced!

Nancy & Kathy,
I was taking Restoril for 4 months, just saw new neuro, who is a
sleep specialist. Just started me on 50mg of Benedryl instead. It
made me woozy for the first few nights. But you can get Benadryl
over the counter in 25mg and take 2 or get an RX of 50mg from your
MD. I take mine 1 hour before I go to bed. Maybe this would help????
Just a cheap thing you could try! No MD visit fee and Rx fee???
Celeste

but I am trying to figure out what causes the pain. Is it like
arthritic pain or more like muscle pain. I think if I could
understand what is causing the pain that I might be able to help him
more.
download of MSN Explorer at <a
href="http://explorer.msn.com"

Mary,
My husband has been using Miralax for colon problems since August of 2000.
this has been much better than the ducolax that he had used prior to that.
Ask your doctor about it. Miralax is fairly new, but we are told that it
does not do as much damage to the colon itself. Two different doctors
recommended it to us.
Marilyn in TN

Thanks for sharing this bit of info. Marilyn in TN

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The Oregon/Washington support group met today, Sunday at 2pm. Unfortunately
we only had six at our meeting. However, we still had a very good meeting.
We had Kate Doebke, the movement specialtist from OHSU and Kirsty Doeken,
the speech pathologist with us. Kate came with information regarding
in-home health care information and what is available to us as patients and
caregivers. We learned much from her, but she also learned from us. Matter
of fact she is trying to put some things together at OHSU to help bridge the
gap from doctor giving diagnosis and then patient finding information and
resources to help live with the what they have. She is trying to get
started a peer counseling resource for newly diagnosed patients so they can
hook up immediately with someone else who has had it for awhile so they can
ask questions and learn things that will benefit them. She also has started
a newly diagnosed group of Parkinson and Parkinson+ and MSA patients group
of 6 - 8 so they can have a question and answer session that is relaxed.
Jack and I felt she was very interested in helping the patients learn what
they can so they can live to the fullest.
We also discussed depression. More then 75% of the patients and caregivers
are helped with anti depressives. She felt it was important to get help and
not stop after 2 - 4 trys to find something that will work. It may be
necessary to see a Psycologist to get the right dose and anti depressent.
She said if we go to a neurologist, and or Urologist, why not be willing to
go get the help needed from a psycologist?
She also went around and asked what the caregivers were doing for
themselves. We all shared our outlets from working on the computer,
reading, volunteering, walking, water aerobics, to taking French. Also
shared how we leave the patient. In home help, lifeline, married kids live
next door. The necessity of getting away without feeling quilt is very
important. Then it was discussed things the patient can do. Audio books,
reading while one can, travelling.
Jack and I shared how he has had his scooter for 4 years and we have
travelled to Hawaii, San Diago, Canada. It just takes a little pre
planning. Before going to an area get a booklet on the area and contact the
Disabillity contact for Accessible Vans and other information regarding
hotels, etc. There is so much information out there to help if one whats to
travell. The airlines are wonderful in helping one fly. Jack takes his
scooter right up to the plane, gets on and they take his scooter down an
elevator. Then when we get there they bring it up and away we go. We had
an accessible van waiting for us outside the terminal and away we went.
We also shared taking the scooter to the beach and accessible areas for
walking and going with a scooter or wheel chair. Visiting friends and
having them over is also important. We shared we have a 5' suit case ramp
we can take and get into homes with one - three steps. It is nice sometimes
to go to others homes. Our friends insisted we come and share dinner with
three other couples around Christmas. I told them it was getting hard for
Jack to do that. Eating was getting harder. They said Pizza should be
fairly easy so they ordered Pizza, had candles, table cloth, fancy dishes,
little crab and crackers before and a lovely dinner for us to share with
them. It is important to let others know your needs and let them do
something for you.
Charmayne is scanning an information sheet Kate is working on to give to
patients and she wants our group to read it and add and cross off what we
feel would be helpful and then send it back to her. Jack and I feel good
about the involvment they want to have with us. It is helpful for us and
them. We will meet again in April. Unfortunately we forgot to set a
definite date, but it will be at 2pm at OHSU on a Sunday.
Sorry this is so long, but maybe some of the information with help someone
else on the list. Hugs, Judy

Hi Group, I just wanted to remind anyone out there who has an indwelling
catheter to make sure any nurse who changes it or opens the tubing for
irrigation, takes sterile procedures seriously. My father has a nurse that
comes to the house once a month to change the cath. and it isnt always the
same nurse. Now he has an infection called Pseudomonas which is not your
common infection caused by indwelling caths. This infection is the kind you
get when in a hospital from contamination and it is very resistant to
antibiotics. I have been told that many nurses are carriers of a lot of very
resistant infections that may not cause a problem for them but once passed on
can cause serious problems for others especially those who are in a weakened
state to begin with. Needless to say I am very upset and now I have a nurse
coming in for the next 7 days to irrigate the cath with acetic acid. I am
seeing how lax they are with sterilization. She did not wipe the tubing with
alcohol before or after she disconnected it, did not put on sterile gloves
today to do it and when after she told me she rinsed off everything she used
yesterday so it is fine to use it again today, got very defensive when I told
her I threw everything out and wanted new instruments used each day (which I
provided). So please watch them carefully. I pray that there is someway to
knock this out of his system before it gets worse. It seems like I have the
most problems with him whenever someone else is brought in to do something.
If anyone knows anything about this type of infection please help! Thanks,
Stacey

Dear Laurie, My heart goes out to you and Mom although I know little more than names , dx , therapy and problems. Are you a full time caregiver, working wife and Mother busy 38 hours every day? Mom IS trying and cries because she IS helpless. My demented Jan cries, and hugs and single words take time yet save it too. We are now at the one-word plateau, bed or chair? TV or radio? hurt here? and reading eyes or pointing. Our big wall calendar reminds me of his constant needs--keeps me patient and going one day at a time. Hopefully helpful, LA Louise

This directory is intended to aid in forming local MSA/Shy-Drager support
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Regards,
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AUSTRALIA NSW George Ford grford@...
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If you remember, our Constitution clearly separates church and state. Your
principal is lying when he states that all those things are legal also. Many of
those things are not legal for a public forum. As a Christian, I feel a
principal has a duty to the community to uphold the law to the letter. He can
pray any time he wants, but should not force his personal religious convictions
on anyone. He broke the law by praying "in the name of Jesus" over a publicly
owned address system on public land, after all many religions do not believe in
Christ. I believe in Christ, but have seen friends shunned because they were
Jews or other religions - BY "good Christians". When my "good Christian"
friends as children told me not to play with Malcom Resnick as a child, my mom
told me that is was right to play with whoever I wanted. Was it "Christian" of
them to say the things they did?
Prayer is NOT banned at football games or ANYWHERE else. ONLY public prayer is
banned. You have the right to pray anywhere you want, any time you want. BUT
you do not have the right to use a government owned public address system on
government property to put your beliefs above those of someone else. Hitler
used these same arguments to turn "Christians" against Jews in the 1930's and
had a minister named Dietrich Bonhoeffer killed because he preached it was not
"Christian" to discriminate against other religions.
Do you really want to put "Christian" beliefs above all other beliefs as a
national religion? They did that in the 1500's (the Inquisition). If you did
not believer the "Christian" beliefs of Spain, you could have had all kinds of
nasty things done to you. Christ taught love your neighbor and bring your
neighbor to Christ by your actions - not by hitting him over the head with
Christ. I pray when I want and where I want, but I do not feel that all my
friends should have to pray the way I do. All "Christians" do NOT believe the
same identical way I do, otherwise why do we have more than 30 denominations of
"Christians"?
Christ (at least the one from MY Bible) taught respect for ALL people, NOT just
Christians. He taught love thy neighbor (even if he persecutes you). He did
not preach to spread all the hate you can. Hitler used these same distortions
of laws, beliefs and even religion. Please pray all you want, it IS a right
guaranteed in our Constitution, but do NOT force your prayer on me.
I'm sorry, but to me that is a biggot speaking and I would ask that he be
removed from the job. I certainly feel (as a Christian) that that is NOT a
Christian attitude and feel he should at the very least appologise to any
non-Christians he may have offended.
Bill and Charlotte (who feels the same as I do about this type of hate message).

Now that I'm 'older' (but I refuse to grow up), here's what I've
discovered:
ONE- I started out with nothing, and I still have most of it.
TWO- My wild oats have turned into prunes and All Bran.
THREE- I finally got my head together; now my body is falling apart.
FOUR- Funny, I don't remember being absent minded..
FIVE- All reports are in; life is now officially unfair.
SIX- If all is not lost, where is it?
SEVEN- It is easier to get older than it is to get wiser
EIGHT- Some days you're the dog; some days you're the hydrant.
NINE- I wish the buck stopped here; I sure could use a few..
TEN- Kids in the back seat cause accidents.
ELEVEN- Accidents in the back seat cause..kids.
TWELVE- It's hard to make a comeback when you haven't been anywhere.
THIRTEEN- Only time the world beats a path to your door is when you're
in
the bathroom.
FOURTEEN- If God wanted me to touch my toes, he would have put them on
my
knees.
FIFTEEN- When I'm finally holding all the cards, why does everyone
decide
to play chess?
SIXTEEN- It's not hard to meet expenses.. they're everywhere.
SEVENTEEN- The only difference between a rut and a grave is the depth.
EIGHTEEN- These days, I spend a lot of time thinking about the
hereafter..I go somewhere to get something and then wonder what I'm here
after.
NINETEEN- UNABLE TO REMEMBER IF I HAVE MAILED THIS TO YOU OR NOT

Kathy,

I have a spinal cord injury and cerebellar herniation. These conditions cause autonomic problems and are neurodegenerative. My neuro recently told me that it is like the heart is having a seizure, and that the meds that they use to try to control them are a form of seizure meds and that one can have a heart attack from these heart seizures. Something about neurohormonal stuff.

Another interesting thing, Aussie Annie, had been taking seizure meds for years. In my head, I have felt that this was one of the reasons she has done so well. The meds help prevent the autonomic seizures. Of course, this is only my ideas on the subject.

Perhaps your insight might have some merit.

later and hugs,

cindy

Diane, I am sorry to hear all of this. Sorry that your dad has reached this point. My mother-in-law had cancer and decided at a point where there was little more to do except chemo (which she had done before many times) to stop the treatment. She had hospice in. I know that it is almost impossible to sit by and watch someone refuse treatment. But this is something that your father CAN do something about. I send you all my best wishes. I am thinking of him and hope everyone finds the peace they deserve. Debbie

Just to let all of you know, dad and Lita went home yesterday evening. Dad has made choices regarding his care, and Lita is respecting those choices. The doctors can do no more for him, and told
Lita that. Dad has refused medication, food and water since Friday. Lita
managed to "force" about 5 tablespoons of Boost into him today, but he is
clamping his mouth shut as much as he can. He has decided that he doesn't
want to be here anymore, and he's ready to go. Lita has hospice coming over
today or tomorrow to assess the situation. They know that he is refusing
nourishment and medication. There's not much else to tell right now. Please continue to pray for all of us in this painful time. I will continue to keep you updated. Smiles and hugs, Diane

If anyone is having trouble joining just email me or Bill and tell us your
chat name and we can invite you to the chat room that way. Just me and Bill
are there now... come on guys.. it's fun and Bill can give you realtime
caregiving tips.
Hugs.
Pam
pbower@...

This is a statement that was read over the PA system at the football
game at Roane County High School, Kingston, Tennessee by school
Principal Jody McLoud, on September 1, 2000. I thought it was worth
sharing with the world, and hope you will forward it to all your friends.
It
clearly shows just how far this country has gone in the wrong direction.
It has always been the custom at Roane County High School football games
to
say a prayer and play the National Anthem to honor God and Country. Due
to a
recent ruling by t he Supreme Court, I am told that saying a prayer is a
violation of Federal Case Law.
As I understand the law at this time, I can use this public facility to
approve of sexual perversion and call it an alternate lifestyle, and
if someone is offended, that's OK.
I can use it to condone sexual promiscuity by dispensing condoms and
calling it safe sex. If someone is offended, that's OK.
I can even use this public facility to present the merits of killing an
unborn baby as a viable means of birth control. If someone is offended,
no
problem.
I can designate a school day as earth day and involve students in
activities
to religiously worship and praise the goddess, mother earth, and call it
ecology.
I can use literature, videos and presentations in the classroom that
depict
people with strong, traditional Christian convictions as simple minded
and ignorant and call it enlightenment.
However, if anyone uses this facility to honor God and ask Him to bless
this
event with safety and good sportsmanship, Federal Case Law is violated.
This appears to be inconsistent at best, and at worst, diabolical.
Apparently, we are to be tolerant of everything and anyone exc
Nevertheless, as a school principal, I frequently ask staff and students
to
abide by rules which they do not necessarily agree. For me to do
otherwise
would be inconsistent at best, and, at worst, hypocritical. I suffer
from
that affliction enough unintentionally. I certainly do not need to add
an
intentional transgression.
For this reason, I shall, "Render unto Caesar that which is Caesar's,"
and
refrain from praying at this time. However, if you feel inspired to
honor,
praise and thank God, and ask Him in the name of Jesus to bless this
event,
please feel free to do so. As far as I know, that's not against the
law----yet."
AND...one by one, the people in the stands bowed their heads, held hands
with
one another, and began to pray. They prayed in the stands. They prayed
in
the team huddles. They prayed at the concession stand. And they prayed
in
the announcer's box. The only place they didn't pray was in the Supreme
Court of the United States of America - the seat of
"justice" in the one nation under God.
Somehow, Kingston, Tennessee, remembered what so many have forgotten...
we
are given the Freedom OF Religion, not the Freedom FROM Religion.

Hi all,
Is anyone else having a problem getting into Pam's Chatroom today? I can'y get
in.
Take care, Bill and Charlotte

Hey Mary,

Dave has left sided weakness. He has never had a stroke, the weakness worsens and sometimes his left foot just won't move. Thank you for your reply

Kathy T.

Hi Vera,

I really feel good about our trip now that everyone has re-enforced my decision. I see Dave getting weaker every day, I want him to enjoy life while he can .

Thanks Kathy T.

Does anyone have suggestions to stop the pain of restless legs? I have had
pain in my shins but I have been able to tolerate it. The last couple of
nights I've been awake and can't go back to sleep. My shins hurt and
anywhere I put my legs I'm not comfortable and the pain won't ease. Any
suggestions will be greatly appreicated.
Thanks, Sue

Hi Louise,

Thanks for your reply. Dave gets pt three times a week, thanks to all of you, I found out how important physical therapy is for people with MSA. Thank you for your help. I will pray for your husband and also for you because I know how hard it is to watch our loved ones go from active productive people to being dependent on others for everything.

Kathy T.

Hi John,

When it happens to Dave, he also has problems with alertness, you can talk to him but he won't answer, and as soon as the episode passes, his alertness returns to normal.

thanks Kathy

HI John
My mom has had speech therapy, but it did not help at all. What is so
upsetting is that you're trying to talk to her and listen to her and all we
keep saying is "Mom, I'm sorry but I can't understand what you're saying" and
then she starts to cry. It's horrible. nThis happens everyday. I
definitely know that bad things happen to good people but it's still not
justifiable. We know we have to deal with it, but that doesn't make it any
easier to see someone you love so much and remember so active and vibrant,
turned into this totally helpless person.
Love
Laurie

Bill and I and Barb Selleck were there last week. Hope more can join us
this week.
Hugs,
Pam
Chatname: PammyGB

Jim & Peg:
Sure hope you are wrong about Pacifcare & going under here in
California. I just lost my Doctor because Friendly Hills went out .
Don't know where my records are now, maybe never will. I did get a
new doctor, but am with Pacifcare. Wouldn't that be my luck, they
fine my records and then I don't have a doctor.
Please be wrong.
Vera

Hi John:
I'm only about three weeks behind in the posting,so I hope it's not
to late to answer you question about the Violent dreams. One of the
first symptoms Fred had when first DX with PD was the violent dreams
and the JLM , now he has gotten away from the violent dreams, but has
dreams where he will just laugh out loud, then speak, but nothing
comes out and then will laugh out loud again. I ask him if he
remembers what he dreamed of and why he was laughing, but he doesn't
remember after he is awake. This has happen three or four times in
the last few weeks. Believe me this is much better then the violent
dreams and I'm wondering if I can get rid of the dream catcher now,
that hangs over his side of the bed.
Always Vera

Kate:
Enjoy your trip, it will be something that you will always have to
remember. Fred had always wanted to go to Maui for our 25th. Even
with the MSA we still went. Some things he couldn't do, but he still
enjoyed it and I can never say "Wish we had".
Always Vera

Just had my Mom to neurologist and he said those type of "blacking out"
spells were actually the low BP and not seizures. Mom was sitting on toilet
(had just walked there) every time and there were increased tremors along w/
the blank stare, facial droop and drooling. Lasted 1-3 minutes. My Dad
also noted around that time her pupils were unevenly dilated.
She now has developed wrist drop in her good arm (broke the other wrist at
Thanksgiving) - not sure of cause but it seems to be resolving very slowly.
Making feeding herself impossible. She is really losing function rapidly.
We increased Mom's Florinef and started her on Execelon (new dementia med.)
Mom's dementia complicates everything because she can't remember much from
day to day - starts all over each morning. My Dad is going to move into the
independent living apartments in the same building so that should help
everybody.

Hello Mary:
Just checking in to see how you are doing? Are you catching up on
your reading? Also how is Warren doing?
I took Fred to his Neuro last Friday. He feels the same as Fred's MD
does that Freds bowels are slowing down now and wants us to try
Dulcolax for the constipation that Fred is having. Also His BP is
dropping again and he feels that is why Fred starts feeling weak
around 4 in the afternoon. So he has inceased his proamatine to 1 3x
a day, instead of 1/2 and he wants to see him in 2 months. I asked
him if he has anyone else with MSA, he told me that he does, that 10%
of people DX with PD , really have MSA. Also he told me that some
people with MSA never have any other symptoms but the PD , but Fred
isn't one of them. Fred is now using the WC more often then before.
Our MD has asked the insurance to buy it for us , instead of renting
it. The doctor got the ok for this, but so far haven't heard anything
from the insurance or the company that has rented the WC to us.
Still busy taking care of Hannah, Heather is starting work at
Disneyland tomorrow.So I'll be watching the baby. One of her friends
works in the gardens at Disneyland, so hoping that I can get my
garden to look like Disneyland, instead of the mojave dessert. I love
to work in the garden, b