My blog

http://members.nbci.com/sedgeman/crows6.htm

Good morning. I have noticed that a couple of the emails I have posted to
this group have not shown up in my daily email. I checked the archives and
the messages are there. Does anyone know the reason why they wouldn't show
up in the regular email? I guess I am still confused about the relationship
between (what I call) the regular email that comes directly to my email

Something to think about.
We all know first hand what brain cell death does to people. You lose control
of your body. Recent studies have shown links between brain cell death in the
frontal lobes (where emotional outbursts come from) and the parents
drinking/drug and possibly even smoking habits. While I do not condone
drinking/drugs/smoking (I do not myself and neither did Charlotte) or
lawbreaking, my religion tells me not to blame the children for the sins of the
parents. We have been foster parents and have seen what "good Christians" have
done to their children emotionally through ignorance and not on purpose.
In our opinion (Charlotte and I) believe that as a society, the USA needs to
devote more time and money to mental health facilities. If children are
identified as emotionally disturbed early in life (grades K-3) and get help, it
has been proven that the majority do not have problems by high school. In the
Scandinavian countries they have also developed school programs that teach
tolerance and fight bullying. This has lowered fighting in schools by as much
as 85%. Yet the USA continues to have a "class" system in it's schools (freaks,
jocks, dweebs, geeks, etc.). Parents get so wrapped up in fighting abortion
that they accidentally pass the "no tolerance attitude" on to their children.
Yet these same people complain about paying taxes to support these programs.
Let's stop and look at taxes. It costs about $100,000 per year per inmate of
prison. If we could spend a one time cost of treatment in elementary school of
about $25,000 per child and cut the number of inmates 15 years or more down the
line by 30% - that would save the USA over $30 Billion per year (in today's
dollars) at a cost of less than $10 Billion per year now (See the Dept. of
Justice figures below). The anti-hate and no bullying school programs are even
cheaper and produce much better results on average. As long as out politicians
are able to get elected by preaching no tolerance for opposing views, we
demonstrate to our children that we as a nation do not support tolerance.
My seven year old grandson can understand the concept of still being friends
with children who act out because Jesus said "Love your neighbor" and every
major religion that I know of, teaches the same idea in it's own way. We also
explain to him that the children who act that way need help or medicines like
grandmom.
Take care, Bill and Charlotte
===========================
Dept. of Justice Summary findings
On December 31, 1999,
-- 1,366,721 prisoners were under Federal or State
jurisdiction,
(includes prisoners in custody and persons under the
legal authority of
a prison system but who are held outside its facilities)
-- the total increased 3.4% from yearend 1998,
less than the average annual growth of 6.5% since
yearend 1990.
-- there were an estimated 476 prison inmates per
100,000 U.S.
residents -- up from 292 at yearend 1990.
-- the number of women under the jurisdiction of State
or Federal prison authorities increased 4.4% 1999, reaching 90,668 at yearend,
outpacing the rise in the number of men. The number of men rose 3.3%, totaling
1,276,053 at yearend.
On December 31, 1999, State prisons were operating at
between 1% and 17% above capacity, while Federal prisons were operating at 32%
above capacity.
At yearend 1999 there were 3,408 sentenced black male
inmates per 100,000 black males in the United States, compared to 1,335
sentenced Hispanic male inmates per 100,000 Hispanic males and 417 white male
inmates per 100,000 white males.

Pam
i have just logged in and seen a message from me to the group that has
come from my wife's PC. I don't know how it happened because she
didn't open any attachments. The message is number 15372. Can you
delete it please.
Regards
John

Has anyone had experience with Imdur? I understand that it can cause
urinary retention in helathy people, are there any special
considerations for MSA patients?
Doug

Barb,

For years I couldn't tolerate the side affects of baclofen. I had tried it on numerous occasions but it just made me too tired. One day I was out shopping and found myself stuck in a parking lot unable to walk. The incident scared me so bad that I knew I would just have to start taking the baclofen and live with those side affects.

I was able to eliminate the starting side effects of baclofen by taking it at night. I took twenty mg. 20 minutes before going to bed. I did this for over three months. It worked. I was able to get a good night's sleep (elimination of cramping) and no day time tiredness. Eventually, I was able to add the day time dose with no side affects. I am now taking the maximum dose (80 mg) with minimal affects. The side affects that I experience are increased incontinence and some additional weakness. I can live with those because it does make walking so much easier!

I see that many doctors are now prescribing it. This med works centrally (GABA?). It does increase weakness and I'm quite sure it makes all your muscles weaker not just the motor ones. It may be just coincidental, but I have noticed that if I miss a dose my heart rate goes way up and I experience a tachycardiac episode.

For me, this med does its job. It was just difficult finding a way to start it without experiencing those horrendous side effects.

Others have said it much better than I can about Waverley's comments.
Nevertheless, for me her life's journey is an impressive inspiration to
those of us just entering the realm of MSA with all its new challenges to
learn from and grow with.
Thank you Waverley for being here and sharing.
God speed and good luck. May you achieve all your goals.
Perry Sennewald 804-244-0018

Ah well it happens to the best of us. I got caught by one awhile ago too.
:) Take care and get some rest!
Hugs,
Pam
From: <wwwombat@...

Pam
I absolutely agree with you, but when one is sleep deprived and
frazzled, one makes mistakes. As an ex IT professional, it irks me to
think I clicked on the wretched file. But I must say thatI would have

John:
I was reading you post and came across what you said about the
doctors sometimes saying that it is all in your head and I know that
many of them have done this, but in someways they are right with that
DX. MSA does have to do with the brain cells , so really their not
compeletly wrong. I just wish for once they were.
Take Care Vera

To all you bird fans:
The game warden said it was ok if I raise the two crows, but not to keep
them. When they want to go, turn them loose. I have them in a small pet
carrier. My indoor cats are afraid of them. They make a lot of noise when it
is feeding time.
I have been feeding them moistened kitten chow. Some bananas, a wiener,and
egg yoke.
I talked to the vet about the fleas and lice....and took her advice. I
sprayed the dog flea spray on an old rag then wrapped it around the crows.
I named one "Charlie" the other "Orley". Well they're both doing fine.
They're just beginning to stand on their legs. Still wobbly. They poop so
much. I put torn up toilet paper in there carrier to easily remove the
messes.
that's all for now.
Mary Ann-

Hi Judy, I have been thinking of you and Mark. I think we are going to be ask to make the same decisions you and Mark did soon. Dave is really getting weaker. Hope you are getting some rest. Tell Mark we said hello.

take care, Kathy

Hi Vera,

Hope you get good news from Fred's doctor. Tell Fred Dave and I hope he gets to feeling better soon.

Take care, Kathy

Elanine:
I've always used a plastic table cloth to put under the chairs to
keep the food from going all over when it spills or dropping when
eating. It works great with the baby high chair also , and it's a
great way to clean up after a hair cut. Just fold it and take it to
the trash can to shake clean.
Just one thing you may want to try.
Vera

I just wanted to say thank you for the infro on the question about
the virus I asked about. I just deleted it and then went into the
recently deleted e mail and did it again without ever opening it.
Looks like I haven;t lost anything. Sure glad I got the warning
before from this group and knew what it was when it came in,
otherwise I may of open it.
Take Care
Vera

Thanks, Kathy. Bob still wears levis also, but it would surely be easier to
have nice looking pants with elastic! Pennys was suggested and I'm looking
into it. We get such good advice here!
Elaine Grimmesey

Mary, I am glad to hear that Warren is OK. It's always something with this
disease -- as though the disease isn't bad enough. Debbie

Maryann:
Sorry I didn't get a chance to get back to you sooner then this. I
had things to do the day before yesterday and then yesterday all the
short night hit me and I just wanted to sleep and sleep. So I did.
I really don't know the person that you are talking about. She could
be some family member of Freds, but couldn't be sure. Fred's father
took off when Fred was only 5yrs old and he didn't see him again till
he was 21, after that one meeting, his dad left again and never has
heard anything from him. He does know he remarried and has a family
somewhere, but not sure where.
Take Care
Vera

Mary:
Really sorry to hear about Warren and hope all will be alright and
nothing comes out of these mini srokes. My mother had a few about 6
years ago, not alot showed up on the test, but it did leave her with
a shakey voice, the doctor's dx it as spasmodic torticollis and I
think they did that dx because they couldn't fine anything else. I
know this is something more for you to worry about and I'm sorry, you
have more then your hand full already. Take care of yourself, you
need the rest after another stressful time.
Hugs Vera

Hi all, Well another interesting incident in the Strong household. Tuesday
at dinner, Warren suddenly couldn't move or talk. I called 911 and when
they got through testing one man said I think he's had a stroke. He had
what they called a mini-stroke and the cat scan showed he has had several
recently, which we didn't even know happened.
He came back really quickly and by time I was allowed in ER, they told me he
couldn't speak, he greeted me with "Hello dear." The nurse heard him and
called Dr. he's talking so all were pleased. He also started to be able to
move arms & legs. They kept him over night and by Wed noon was doing really
well. Dr. said he can go home if you have someone to help and I called my
aide and she came, so I had a good night's sleep. Am still tired this AM
but I think thats mostly release of concern.
His blood pressure shot up really high even while sitting and nurse told me
that was a sign of stroke. The diastolic was 105 and she said any time it
gets to 100 and over to really watch him and/or call Dr.
It seems anything can happen with this disease and does. Thanks for
listening,
Mary S.

Doug,
The Baby baby foods are a little runny, you might want to use a little
thick-it to stiffen them up. A good blender can turn almost any meal into
the right consistency in seconds and gravy or thickit can help. I haven't
used the Junior baby foods in years but they might be better. I actually
want Charlotte to chew some as it is exercise.
Take care, Bill and Charlotte

If the care giver is short on time to prepare pureed food from a
cookbook, are baby foods a reasonable option?
Are they the right consistency or can they be adjusted to the correct
consistency?
Doug

Jim,
If everyone in the world completely agreed, it would be a dull place :o) All I
ask is that when I listen to them, they also listen to me :o) My ancestors left
Germany because of religious persecution and the stories were passed down to
us. I truly believe that Church and State must be separate. No religion that
has humans running it is completely right all the time as humans make mistakes.
Take care, Bill and Charlotte
==========================

Pam;
I relize I don't have the virus if I didn' open the attachment. What I'm
wondering is, if this virus can be sent to others by just e-mailing them,
once it is in your system, like apparenly it is in John Cummings. Could we
all be infected already by reading John's e-mail to us..
Mary Ann-
From: Pam Bower <pbower@...

Okay, John and Mary Ann,
To find out more about this virus (and how to get rid of it) goto:
http://www.symantec.com/avcenter/venc/data/w32.magistr.24876@mm.html
Or goto:
http://www.symantec.com/avcenter/
and then search for w32.magistr.24876@mm . (That's the virus in the
TRAYICON.EXE program).
A general note about internet security. Even if you know the person sending
you a file as an attachment, don't open it without first first saving it and
running a virus scan against it. And update your virus scanner regularly.
I do weekly.
Mary Ann, if you didn't try to open or run it you should be okay.
Hope that helps.
Regards,
=jbf=
John B. Fisher

Group
I was wondering if any of us who opened John's e-mail, could we also be
infected with Eoins virus?
Mary Ann-

Hi Maryann,
You are only affected if you clicked on the attachment and ran the
program. If you just read the email and deleted it you are fine.
Hugs,
Pam

Melaine, My mother Joyce had swelling in her worse leg and foot. After one
acupuncture treatment, it went down completely. I know others have not had
success from acupuncture, but my mom did in this respect (it did nothing for
her head flex). Debbie

John
My virus protector, said it contained a VIRUS! I don't know who Eoin is but
he just sent us a virus. I did not open it.
I'm not sure how to clean it up. mabey someone on this lis does.
Mary Ann-
From: wwwombat@...

EDITORIALS

Primary Autonomic Failure: Three Clinical
Presentations of One Disease?

Horacio Kaufmann, MD

Pages 382-384

Ann Intern Med. 2000;133:382-384.

Three neurodegenerative diseases of unknown cause involve primary autonomic failure.
These diseases are pure autonomic failure, in which autonomic impairment (that is,
orthostatic hypotension and bladder and sexual dysfunction) occurs alone; Parkinson disease,
in which autonomic failure is combined with an extrapyramidal movement disorder; and
multiple-system atrophy (also called Shy-Drager syndrome), in which autonomic failure is
combined with an extrapyramidal or cerebellar movement disorder or both (1).

During the early stages of multiple-system atrophy, autonomic deficits may be the sole
clinical manifestation; therefore, the disease may resemble pure autonomic failure. However,
after a variable period that can be as long as several years, extrapyramidal or cerebellar
deficits or both invariably develop. In Parkinson disease, extrapyramidal motor problems are
the presenting feature; later in the disease process, patients may develop severe autonomic
failure, making it difficult to distinguish between Parkinson disease and multiple-system
atrophy. To further complicate the distinction, some patients with multiple-system atrophy
display motor deficits similar to those seen in Parkinson disease before autonomic failure is
apparent.

In clinical practice, all of these possibilities lead to two main diagnostic problems. First, it
cannot be determined whether a patient who is thought to have pure autonomic failure and
whose only finding is autonomic failure will develop more widespread nonautonomic neuronal
damage and be found to have multiple-system atrophy. Second, it may be difficult to
determine whether a patient with autonomic failure and a parkinsonian movement disorder
has Parkinson disease or multiple-system atrophy.

In addition to clinical criteria, several tests have been used to distinguish among Parkinson
disease, pure autonomic failure, and multiple-system atrophy. For example, vasopressin
release in response to hypotension and growth hormone secretion in response to clonidine
are blunted in multiple-system atrophy but preserved in pure autonomic failure and Parkinson
disease. This is because brain stem-hypothalamic-pituitary pathways are affected only by
multiple-system atrophy (2, 3). Plasma norepinephrine concentration while supine is low in
patients with pure autonomic failure but normal in patients with multiple-system atrophy
because postganglionic neurons are normal (4). Sphincter electromyography shows
denervation in multiple-system atrophy because the Onuf nucleus in segments S2 to S4 of the
spinal cord is affected; however, it is normal in Parkinson disease (5). In addition, magnetic
resonance imaging of the brain shows abnormalities in the putamen only in multiple-system
atrophy (6).

However, most if not all of these tests are frequently ambiguous, and accurate methods to
distinguish Parkinson disease from other diseases with extrapyramidal involvement,
particularly multiple-system atrophy, are necessary. Differential diagnosis of extrapyramidal
and autonomic disorders is important because of prognostic purposes and because accurate
diagnoses are required when testing new surgical and pharmacologic therapies. In a thorough
and elegant study in this issue, Goldstein and colleagues (7) show that sympathetic cardiac
innervation is selectively affected in Parkinson disease and pure autonomic failure but not in
multiple-system atrophy. This may be a useful diagnostic test that can distinguish between
Parkinson disease and multiple-system atrophy. Moreover, in a patient with apparent pure
autonomic failure, normal sympathetic cardiac innervation should indicate probable
development of multiple-system atrophy.

To visualize the sympathetic innervation of the heart, the investigators used thoracic
positron emission tomographic scanning after intravenous infusion of 6-[18
F]fluorodopamine, a catecholamine taken up by sympathetic postganglionic neurons and
handled in a manner similar to the way in which norepinephrine is handled. In addition, the
investigators performed cardiac catheterization to determine cardiac norepinephrine
spillover, extraction of [3 H]norepinephrine, and venous-arterial differences in levels of
plasma dihydroxyphenylglycol (DHPG, a marker of neuronal norepinephrine turnover) and
L-dopa (a marker of norepinephrine synthesis in sympathetic nerves). Of 29 patients with
Parkinson disease, 9 had chronic orthostatic hypotension (only 4 were taking L-dopa). Of
the remaining 20 patients with Parkinson disease (those without orthostatic hypotension),
15 were taking L-dopa. As expected, most patients with multiple-system atrophy had
orthostatic hypotension, 5 of whom were taking L-dopa.

Goldstein and colleagues found that all patients with Parkinson disease and orthostatic
hypotension as well as most patients with Parkinson disease and no orthostatic hypotension
had loss of functional cardiac sympathetic nerve terminals. This was shown by decreased
myocardial concentration of 6-[18 F]fluorodopamine-derived radioactivity as well as
decreased cardiac extraction of [3 H]norepinephrine, norepinephrine spillover, and cardiac
venous-arterial differences in plasma levels of DHPG and L-dopa. Myocardial concentrations
of 6-[18 F]fluorodopamine-derived radioactivity were as low in patients with Parkinson
disease as in patients with pure autonomic failure. In marked contrast, all patients with
multiple-system atrophy had normal 6-[18 F]fluorodopamine-derived radioactivity that was
similar to that in normal controls.

Similar results were seen in several studies from different laboratories that used single
photon-emission computed tomographic imaging with123 I-metaiodobenzylguanidine (8-10),
as well as in an earlier study by Goldstein and colleagues (11) that used 6-[18
F]fluorodopamine positron emission tomography. However, these studies included a small
number of patients. More important, questions remained about the possibility that chronic
L-dopa treatment accounted for these findings in Parkinson disease. In their present study,
Goldstein and colleagues show that the abnormal cardiac sympathetic innervation detected by
positron emission tomography is not related to long-term L-dopa administration: The defect
was also evident in patients with Parkinson disease who were not taking L-dopa. Moreover,
patients with multiple-system atrophy who were taking L-dopa had normal cardiac
sympathetic innervation.

Scanning of the heart with positron emission tomography distinguishes between Parkinson
disease and multiple-system atrophy because sympathetic innervation is impaired in the
former but not the latter. Goldstein and colleagues' finding of loss of functional cardiac
sympathetic nerve terminals in Parkinson disease also confirms that the degenerative process
of this disease extends well beyond central dopaminergic systems to involve peripheral
catecholamine-containing neurons. The results further indicate that multiple-system atrophy
exclusively affects neurons in the central nervous system. In multiple-system atrophy,
sympathetic responses are abnormal because peripheral autonomic neurons, although intact,
are not engaged by the central nervous system.

Despite all these clinical and pathologic differences, are these three diseases different
entities? The neuropathologic markers in multiple-system atrophy are glial and neuronal
cytoplasmic inclusions in the central nervous system; peripheral sympathetic postganglionic
neurons are spared (12). In contrast, in Parkinson disease and pure autonomic failure, a
different type of cytoplasmic inclusion (Lewy bodies) is found in the central nervous system
as well as in peripheral autonomic ganglia and postganglionic sympathetic neurons (13-15).

Recent findings suggest that the same neurodegenerative process underlies multiple-system
atrophy, Parkinson disease, and pure autonomic failure because in all three, -synuclein
accumulates in the neuronal cytoplasmic inclusions. A gene encoding for -synuclein, a
neuronal protein of unknown function, is mutated in autosomal dominant Parkinson disease
(16). Nonfamilial Parkinson disease does not have the mutation, but -synuclein accumulates
in Lewy bodies in these patients, suggesting a toxic role for aggregates of this protein (17).
Of interest, it was recently reported that cytoplasmic inclusions in multiple-system atrophy
also stain positive for -synuclein (18), and other researchers have found that Lewy bodies in
pure autonomic failure are strongly positive for -synuclein (Kaufmann and coworkers.
Unpublished data). Thus, abnormalities in the expression or structure of -synuclein or
associated proteins may cause degeneration of catecholamine-containing neurons. It is
therefore possible to speculate that primary autonomic failure includes three clinical
presentations of one disease. Elucidation of the role of -synuclein in neuronal degeneration
may test this hypothesis. Meanwhile, tests that contribute to accurate diagnoses of the
different forms of autonomic failure will greatly facilitate evaluation of new therapies.

Author and Article Information

From Mount Sinai School of Medicine; New York, NY 10029

Requests for Single Reprints: Horacio Kaufmann, MD, Mount Sinai School of Medicine,
Box 1052, New York, NY 10029; e-mail, Horacio.Kaufmann@....

Requests To Purchase Bulk Reprints (minimum, 100 copies): the Reprints
Coordinator; phone, 215-351-2657; e-mail, reprints@....

Keywords: Perioperative care; Surgical procedures, operative; Risk assessment; Models,
statistical; Cardiovascular diseases

References

1. Consensus statement on the definition of orthostatic hypotension, pure autonomic failure,
and multiple-system atrophy. J Neurol Sci. 1996;144:218-9. | PubMed |

2. Kaufmann H, Oribe E, Miller M, Knott P, Wiltshire-Clement M, Yahr MD.
Hypotension-induced vasopressin release distinguishes between pure autonomic failure and
multiple system atrophy with autonomic failure. Neurology. 1992;42(3 Pt 1):590-3.
| PubMed |

3. Kimber JR, Watson L, Mathias CJ. Distinction of idiopathic Parkinson's disease from
multiple-system atrophy by stimulation of growth-hormone release with clonidine. Lancet.
1997;349:1877-81. | PubMed |

4. Goldstein DS, Polinsky RJ, Garty M, Robertson D, Brown RT, Biaggioni I, et al.
Patterns of plasma levels of catechols in neurogenic orthostatic hypotension. Ann Neurol.
1989;26:558-63. | PubMed |

5. Pramstaller PP, Wenning GK, Smith SJ, Beck RO, Quinn NP, Fowler CJ. Nerve
conduction studies, skeletal muscle EMG, and sphincter EMG in multiple-system atrophy. J
Neurol Neurosurg Psychiatry. 1995;58:618-21. | PubMed |

6. Konagaya M, Konagaya Y, Honda H, Iida M. A clinico-MRI study of extrapyramidal
symptoms in multiple-system atrophy-linear hyperintensity in the outer margin of the
putamen. No To Shinkei. 1993;45:509-13. | PubMed |

7. Goldstein DS, Holmes C, Li S, Bruce S, Verhagen Metman L, Cannon RO 3d.
Cardiac sympathetic denervation in Parkinson disease. Ann Intern Med. 2000;133:338-47.
| Annals Abstract | PubMed |

8. Hirayama M, Hakusui S, Koike Y, Ito K, Kato T, Ikeda M, et al. A scintigraphical
qualitative analysis of peripheral vascular sympathetic function with meta-[123
I]iodobenzylguanidine in neurological patients with autonomic failure. J Auton Nerv Syst.
1995;53:230-4. | PubMed |

9. Braune S, Reinhardt M, Schnitzer R, Riedel A, Lucking CH. Cardiac uptake of [123
I]MIBG separates Parkinson's disease from multiple-system atrophy. Neurology.
1999;53:1020-5. | PubMed |

10. Orimo S, Ozawa E, Nakade S, Sugimoto T, Mizusawa H. (123
)I-metaiodobenzylguanidine myocardial scintigraphy in Parkinson's disease. J Neurol
Neurosurg Psychiatry. 1999;67:189-94. | PubMed |

11. Goldstein DS, Holmes C, Cannon RO 3d, Eisenhofer G, Kopin IJ. Sympathetic
cardioneuropathy in dysautonomias. N Engl J Med. 1997;336:696-702. | PubMed |

12. Papp MI, Lantos PL. Accumulation of tubular structures in oligodendroglial and neuronal
cells as the basic alteration in multiple-system atrophy. J Neurol Sci. 1992;107:172-82.
| PubMed |

13. Hague K, Lento P, Morgello S, Caro S, Kaufmann H. The distribution of Lewy
bodies in pure autonomic failure: autopsy findings and review of the literature. Acta
Neuropathol (Berl). 1997;94:192-6. | PubMed |

14. Den Hartog Jager WA, Bethlem J. The distribution of Lewy bodies in the central and
autonomic nervous systems in idiopathic paralysis agitans. J Neurol Neurosurg Psychiat.
1960;23:283-9.

15. Wakabayashi K, Takahashi H, Ohama E, Takeda S, Ikuta F. Lewy bodies in the
visceral autonomic nervous system in Parkinson's disease. Adv Neurol. 1993;60:609-12.
| PubMed |

16. Polymeropoulos MH, Lavedan C, Leroy E, Ide SE, Dehejia A, Dutra A, et al.
Mutation in the -synuclein gene identified in families with Parkinson's disease. Science.
1997;276:2045-7. | PubMed |

17. Spillantini MG, Schmidt ML, Lee VM, Trojanowski JQ, Jakes R, Goedert M.
-Synuclein in Lewy bodies [Letter]. Nature. 1997;388:839-40. | PubMed |

18. Gai WP, Power JH, Blumbergs PC, Blessing WW. Multiple-system atrophy: a new
-synuclein disease? [Letter] Lancet. 1998;352:547-8. | PubMed |

Copyright ©2001 American College of Physicians - American Society of Internal Medicine

Hi, I am having a lot of trouble with my hotmail email account. It takes three to four days for some of my mail to get to the group. Last night I saw two or three emails sent to me and this morning I can't find them. It seems as if they are being deleted. I am going with another email carrier as soon as I can get someone to help me set it up.

Sorry, I didn't get to respond to those who emailed me, hopefully I will have this problem resolved soon.

Take care, Kathy

Yikes! People should never run an attachment that has .exe in it's name
especially if you don't know what it contains.

Unfortunately, John, the KAK worm has infiltrated your PC. Please go to
this page to read about it and see how to repair the damage. You would be
wise to purchase some anti-virus protection software, since this worm has
appeared off and on from lists I've subscribed to. I use McAfee and it
detects this worm as the emails download to my computer. It stops it and
gives me options to delete it than or at least quarantine it.
http://antivirus.about.com/compute/antivirus/library/virusinfo/blkak.htm
It's not fun to get rid of this beast, but it is possible. I have been
through this, and you may have to restore some files from your Windows
CDrom. There's a link on this page to a 'How to Repair' page.
This worm is usually attached to a msg from 'Snow white' with a subject of
'HaHaHaHa' and the listmembers have been warned to delete the msg and the
attachment. I might add there are variations of this worm circulating the web.
Good Luck!
Barbara

Eoin
What is this .exe file? When I downloaded and ran it nothing happened
but when I tried to delete it, I received a message that I couldn't
delete it as it was beibg used by Windows. Eventually, I was able to
delete it. WhatI want to know, what is it supposed to do? I get
nervous when programs run and the screen stays the same.
John

Kathy,
Peg and I are sorry to hear about Bill's passing.
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.
********************************

Bill,
Peg and I appreciate that you switched back to an older version of Netscape
so the digests would work correctly. Even if we don't always agree you have
a lot of good things to say.
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.
********************************

Hi,

As with Judy and Mark, our dog is like a vulture when Charlotte eats. Food rarely hits the floor as it is caught in midair. The little catalogs you get in the mail Dr. Leonard's, etc. have adult bibs which cover the whole front for about 2 for $10 and wipe off with a wet rag. Some people put a vynal tablecloth on the floor and run the wheelchair on it.

Take care, Bill and Charlotte

Nora,

You begin with about 400,000 brain cells. When MSA/SDS begins to show symptoms, you have already lost about 240,000 brain cells. The brain cells that have died determine what symptoms you have. There is no set "order" in which the cells die. There is no set symptoms you will have. There is no set time frame for the symptoms to appear.

We know that exercise helps you keep movement longer. Speech exercises help both speech and swallowing last longer. You must be careful to get enough liquids and watch out for infection.

Symptoms you may (or may not) get are movement disorders, swallowing/speech difficulties, BP problems, balance problems, eye problems, heartbeat problems, constipation, incontinence and rigidity. There is a fair chance you will need a wheelchair within ten years, but it is not certain. Don't buy a house with many steps or levels.

Hope this helps.

Take care Bill and Charlotte

Hi Elaine,
If you have a J C Penney catalog look at page 408. If not, you can check out
jcpenney.com. I've been putting these pants on Mark for the past year. He
has a supra pubic cath so we don't need them to go up and down easily, just
on and off while rolling him from side to side in bed. They are the
Towncraft elastic-waist sport pants, are full elastic around the waist, have
a real fly, and drawstring, they button but you wouldn't have to button the
button. They are $19.99, lots of colors, and also in two lengths of shorts.
They wash like a wonder and we love them.
As far as the floor, the dogs clean up most of the stuff but you probably
could get those plastic mats like we use at work so our desk chairs will roll
over the carpet. I have seen with a cutout not just a square. I had been
giving Mark his liquids in those tommy tippy cups but he's so clumsy now that
he knocks them off of his lap tray or drops them and they leak out the
liquid. I found those big bottom aluminum coffee cups with lids at Target
and I can even fit a straw in the little hole where most people just drink
from. He has yet to turn one of them over!
Happy Cleaning, take care,
Judy Whittaker

Kathy, I am so sorry to hear about Bill. I lost my mother Joyce to MSA in
November. When my younger son said to me yesterday that his grandmother
never should have died, my immediate response was that she never should have
had the disease. It opened a door that no one should ever have to go
through. I hope we all come out the other end OK. My thoughts are with you.
Debbie

Sorry, I had the name wrong. But the Aero mattress sounds great.
Thank you so much.
Doug

Hi Kathy,
Mark does the same thing, eats everything he can even though he aspirates.
He did tell his Doctor that he wanted to continue eating regardless what the
outcome is. The only thing that goes in his PEG anymore is his meds. Meals
are a struggle, it's hard for him to eat, he eats so slow, and most of the
food goes everywhere but in his mouth. All three dogs sit around his lift
chair and fight over everything he drops.
His Doctor said if that is what he wants to do, let him do it.
Take Care,
Judy

Try this page for some information. You can go to the site.
Barb
--
"The Lord's blessing is our greatest wealth; all our work adds nothing
to it." Proverbs 10:22

Hi Doug,
I don't know anything about the Climatron mattress but Mark has an Aero
inflatable mattress on his adjustable bed for pressure sores. I called the
manufacturer of the adjustable bed and asked a few questions about air
mattresses and was advised that I could use any type air mattress on his bed.
I put the old mattress in storage and just put the Aero mattress on top of
the box springs. It has an electric motor and blows up in just a couple of
minutes and can be adjusted from firm to as soft as wanted.
Mark's bed is a full size bed and I put a queen size Aero mattress on and it
gives him more room. So far, it has done wonders for the sores and it was
somewhere around $179.00 which we thought was much less expensive then some.
They are sold about anywhere, I've even seen them at Target.
Hope this helps, take care,
Judy Whittaker

I was diagnosed eleven months ago with SDS. At that time hypotension, extreme
fatigue, slower movement and extreme dizziness . Today blood pressure
dropped
to what we call a great reading most of the time, with pulse lower at 65-70.
Was extremely high at one time. The fainty feeling is not as frequent.
My feel, ankles and legs (right one larger than left) are quite swollen and
red- red is
not my favorite color. This welling prevents me my walking any distance. Do
many
chores and little gardening sitting on ground . Other physical problems no
need to
mention at this time. My attitude and sense of humor helps greatly.
Please let me know how symtoms progressed with "yawl". That's a bit of
southern flavor. I'm new at this show and need to understand my part.
My doctor can answer many questions and prescribe medications, but cannot
tell me how to feel and what and in what order does this "thief" creep up on
you.
Will close and hope to hear from "yawl".
Oh, I woke up on Monday so sad. It dawned on me - the execution. I was down
all day -- the victims and McVeigh received a prayer from me. When the hearse
left the location a terrible feeling engulfed me. I do not believe in the
death penalty.
I agree with a writer "our selected time of death is wrong".
Nora

Though the Bible is only one source of knowledge and beliefs, you may enjoy its "take" on conservation. Please see below.

Carol,
Actually it sounds as if there may be a very tight hereditary bond between a
lot of brain disorders. It is possible that environment may determine what
form of disorder hits. Charlotte had relatives with Parkinson's and her
brother has back problems as well as autonomic problems - but no movement
problems.
Charlotte will be evaluated for the Botox shots on June 29th. Her right hand
is dystonic and painful now. They also okayed going to 7 Baclofen per day if
needed.
Take care, Bill and Charlotte
==============================================

The interesting thing is that Mr. Doerflinger admits that he has had Karl Rove at the White House about this. The National Conference of Catholic Bishops is a non-profit organization and is BARRED from lobbying directly with politicians or it could lose it's tax exemption. NOW is the White House also going to talk to Jews, Moslems, Episcopalians, Lutherans and other religions about this subject OR are only Catholics invited by the White House for their views? The White House is supposed to be concerned about all of us and not just as he says "I've talked a little with
Karl Rove. He is concerned about the views of the Catholic Church on these issues because Catholic voters are seen as such a swing vote in the elections."

It also points to the fact that not all Catholics favor this position as Tommy Thompson is a Catholic who opposes abortion and favors pluripotent stem cell research. Polls consistently show that 63-67% of all Americans support pluripotent stem cell research and the number has gone as high as 85% if the research is explained carefully - that the blastocysts will be destroyed in any case. I know many Catholics who favor the research (and use birth control :o).

But the Catholic Church is also against executions! So if Bush is against this research why is he for executions? Why is he for building military weapons which will kill hundreds of thousands?

This paragraph is a killer for MSA "Other experts said Mr. Bush might also consider a more restrictive option: paying for research only on stem cell lines that have already been derived from human embryos." Presently there is no identified cell line for MSA as there is for Parkinson's.

Take care, Bill and Charlotte

That's very interesting Bill... my mother-in-law had sleep apnea as you
know.. however I don't think I ever mentioned that her father had
Alzheimer's... maybe some underlying genetics is the reason some people
with MSA have sleep apnea and some don't... it gets curiouser and
curiouser.
Hugs,
Pam

This article from NYTimes.com
has been sent to you by mjwb1@....
/

Barbara,

That is the reason for a log of symptoms, med times, eating times, vital signs, etc. You must work with your doctor(s) to work out the best medicines for you as an individual. There are no exacts with MSA. Baclofen usually starts slow and Charlotte was just given the okay to go (slowly) from 5 to 7 per day. BUT we never change more than one med at a time and even then ramp up slowly. If the Baclofen goes okay then in two weeks we can start more Amantadine. Ask your doctor about an agonist. Also tell the doctor about the tired feeling.

Take care, Bill and Charlotte

Hey John (JBF),
:o) Are you getting forgetful :o)
Check out this site:

Just started on baclofen yesterday (1 tab tid) for leg spasms. This morning
I am in la-la land. I'm taking this for leg spasms. Is this drowsy dragged
out feeling a normal side effect of this med? Will it wear off after being
on it the for a while?
I had been on sinemet since the first of the year gradually needing more as
time went on. Started out with one 25/100 as needed til up to 1 1/2 25/100
at 2pm, 6pm, and 2 25/100 at 10pm and another in the middle of the night.
But then I began to have the trembling associated with taking sinemet. So on
to balcofen.
Would a "agonist" med be the answer? The leg spasms are driving me nuts but
so are the side effects of the remedies.
Any input will be greatly apreciated.
Barbara Pond in VA

This article is a bit long.
I tried two things in March, and it looks like the feedback has been
good.
Bed Rails:
First, the crossbraces for the side rails were installed wrong. The
information I had from Invacare was that for full-length rails the
cross braces were supposed to be installed between the 2nd and 3rd
spring from the top and bottom. On this bed they were between
the 3rd and 4th from the bottom and the 4th and 5th from the top.
This put the top cross brace under the patient's shoulders. When I
moved it to the proper position I had to replace the wing-nuts with
hex nuts because the frame interferred with the wing nuts and I
couldn't turn them. Probably that is why the rails were installed
wrong by the supplier (who is a moron, BTW)
Fabric Links (Springs)
The biggest problem with the mattress was cupping. By 'cupping' I
mean that the mattress sagged into a u-shape from left to right
forming a valley under the patient. In order to roll, the patient
has to roll up hill.
With a regular bed this could be fixed by putting a sheet of plywood
betweent the boxsprings and the mattress. The springs on this
hospital bed are horizontal, attached to the frame and with wires
running from side-to side and top to bottom. These spring and wire
assemblies are called 'fabric links.' There are four sections
that move when the bed is adjusted.
So I cut four pieces of 3/8" plywood, one for each section. I made
these narrower than the bed and fastened them to the fabric links by
wrapping duct tape (see note below IRT duct tape) around the middle
of each panel, from top to bottom leaving the left and right edge
free to float as the springs flexed. The panels are narrow enough
and centered so that only the wires are covered, the springs are not.
The face grain of the plywood runs from left to right as plywood
is 15% stiffer in that direction.
The result is that the springs still give but there is not nearly
as much left-to-right cupping of the mattress. It seems to have
helped a bit.
Note: Trivial fact about duct tape
George Lucas's inspiration for 'The Force' in the _Star Wars_
series of films was duct tape.
Like The Force, duct tape has a light side and a dark side and holds
everthing in the universe together.
Doug in GreenBelt, MD USA

Also if you are not using MicroSoft Outlook Express you should be
safe. This virus is written to take advantage of the complete
absence of security features in a default installation of OutLook
which is why geeks call it 'Look Out.'
I understand that the OutLook Express preferences CAN be set to
provide a sane level of security.
Why Microsoft didn't make the secure preferences the defaults is
anybody's guess. My hope is that they wrote 'Look Out' after
donating brain cells for medical research.
It looks like this virus was written to promote a webpage
http://www.sexyfun.net
HOWEVER, the author of the virus NEVER put up a webpage by that
name so the virus hunters DID.
It is safe to go to that webpage and there you will find more
information about this virus/worm.
Computer geeks have a keen sense of irony. Good thing we're not
sarcastic too.......
The virus keeps a record of each address to which it has mailed itself
and never sends to the same address twice from the same source.
It is very difficult to trace the Hybris/Snow White virus back to the
sender because it forges the From: and Reply To: headers.
If you can display and read the full headers you can try to mail
to abuse@ or postmaster@ the mailserver in the 'Received from:'
header.
Your own ISP help desk may be willing to help trace it back to the
source since viruses have a fairly high priority among sysadmins.
Good Luck
Doug in Greenbelt, MD USA

Vera,
If you have a virus protection dated after Oct, 2000 you probably have no
problem. To read more go to:
http://www.symantec.com/avcenter/venc/data/w95.hybris.gen.html
Print out that web page as it will tell you what to look for - also warn
whoever dent you the email (if you can figure it out) that they have the
virus. It is not the list as all of us would have received it.
Take care, Bill and Charlotte
====================================

Was just wondering , I got Snowwhite and the 7 dwarf e mail. I know
it is a vius, so I didn't open it, just deleted it. Is there anything
else I need to do other then this to stop it?
Help
Vera

Fly your flag on June 14th.

Barb
[INLINE]
http://www.geocities.com/flag_of_usa/ragged_old_flagNET.htm
--
"The Lord's blessing is our greatest wealth; all our work adds nothing to it." Proverbs 10:22

For those of you who have heard rumors of "disastrous" results of fetal
tissue transplants read this site for the real story and not some
fictitious political gossip.
http://www.ninds.nih.gov/news_and_events/freedfinal.htm?type=archived
Take care Bill and Charlotte

- Vera , The doctors in Cleveland do not have Charlie on any meds. He
did have the tilt table test which showed a problem with his low blood
pressure. Dr. Sweeney did not feel that the medicines that are used
for this would be helpful.As you do I have support hose for him and
encourage the elevation of his feet as much as possible. As I had read
with many I thought there would be a trade off. Treat one problem and
worsens another. We will keep on truckin..... Betsy

--Kathy , My deepest sympathy to you and your family. Your husband was
truly blessed to have such a loving and caring partner. As you found
strength to guide you through his illness , We pray for your strength
to remember all that you were and always will be to one another.
We can only hope that one day that others will love enough to see us
through life as we have our loved ones. God Bless you with peace of
your heart. Betsy
- In shydrager@y..., bill young

Doug,
There are tons of mattresses and covers that help prevent bedsores. They run
from the $12.98 eggcrate mattress cover at Wal-Mart (which Charlotte uses) to
very expensive computer controlled air pumps which cycle "bumps" through
different chambers in the mattress - sort of a massage mattress :o) The one
Charlotte has is different hardnesses and squiggle patterns for head, trunk
and feet and works quite well for the price.
I saw the type you mention at the nursing home and they ran about $1800 back
then. It would inflate either side or both sides with a small pump.
The computer controlled air pump thing was like the pumped stockings they
used on Charlotte in the hospital which had 4 different air channels and
alternated pumping and releasing air in the channels. It looked like a good
idea to me, but the computer controlled pump alone had to make it expensive.
It may have been inspired by the "wave " at ball parks.
Take care, Bill and Charlotte

In a message dated 06/12/2001 7:13:01 PM Eastern Daylight Time, cav285@...
writes:
<< http://www.nutrition.cornell.edu/nutriquest/fav
I just tried to get to this page and below is the message I received. Is
anyone else having this trouble?
Error Occurred While Processing Request
Error Diagnostic Information
An error has occurred.
HTTP/1.0 404 Object Not Found
Linda

Must not be there anymore or else it has moved.
Barb
--
"The Lord's blessing is our greatest wealth; all our work adds nothing
to it." Proverbs 10:22

One more illustration of the scum roaming the earth now adays.
How sad that they want to profit from another person's heart ache.
Barb
http://www.channel2000.com/sh/news/stories/nat-news-aptv-81629620010612-130616.h\
tml
--
"The Lord's blessing is our greatest wealth; all our work adds nothing
to it." Proverbs 10:22

Has anyone had experience with these? I just heard about them on
Saturday and have been looking for information.
They were described as having adjustable pressure so that the
mattress could be made firm to roll the patient and then
softened again for comfort. A nurse who had worked with
these said that patients do not develope bedsores on these.
Doug in Greenbelt, MD, USA

Hi. Regarding the fava bean thread, I posted a few queries to some on-line
groceries and chef suppliers on where to get fresh beans. I will let you
know if I get a response from any of them.
I also looked at a couple of websites that may be of interest on this topic.
They are:
A Gardener's Guide to Fava Beans which is at:
http://www.efn.org/~rossr/cont.html
and
Nutriquest which is Cornell University's nutrition advice site and is at:
http://www.nutrition.cornell.edu/nutriquest/fav
Both sites make reference to the research on fava beans and their effect on
Parkinson's Disease.
Best wishes,
Cindy V.

Bill,
I just returned from the supermarket (Stop & Shop, a big chain here
in New England) and saw fresh fava beans in pods for $1.99 per
pound. They did not have a large supply and frankly they didn't look
all that fresh, but they were there!
Carol & Rob

Dear Kathy,
You have my deepest sympathy at the loss of your Bill. I'm sure he's at
peace now and you must rest now too, knowing that you supported him in
everyway.
Mary S.

Beautiful, Vera. I book marked that one. I love it when my pointer takes on a mind of it's own. There were butterflies chasing it on this one.

Have a lovely day!

Barb, in very warm Texas. But we are high and dry.

[INLINE] On the run all day so it was great to get your card when I sat down to catch my breath.

--
"The Lord's blessing is our greatest wealth; all our work adds nothing to it." Proverbs 10:22

Vera,
A beautiful thought, thanks for sharing with us.
Mary A.

Hi Bill,
Fava beans were discussed at length on the Parkinson's Ask the Doctor list.
I believe you can read back in archived messages at http://www.parkinson.org
Hugs,
Pam

Hi all,
Some time ago someone mentioned the benefit of Fava beans here on the
list. I have been searching the literature on the benefit of fava beans
and there are studies that show that they can extend the benefit of
Sinemet in many people with Parkinson's. BUT the study shows the
benefit mainly with the fresh beans with the pods. I have not been able
to find Fava beans fresh or canned in the pods, has anyone else looked
for them. I can find Fava beans (canned). Has anyone seen Fava beans
in the pods? :o) Outside of the Mediterranean Sea area :o)
Take care, Bill and Charlotte

Bill, I hope Charlote gets to feeling better soon. Tell her Dave and I said hello.

Kathy

Waverly,
I agree with your thoughts on the death penalty. My
nine year old son has overheard some of the news
coverage on McVeigh and asked me what it meant to
execute someone. After I explained it to him, he said,
(with great horor and disbelief), "You mean we do that
in *this* country?" To him it sounded like a barbaric
act that might be carried out in some far away land
where the government is very different from our
democracy. Children are so wise sometimes.
Melanie in OK

Have you (or anyone) heard of possible implications for MSA?
Tony in Boston

disease should first be treated with a class of drugs known as
dopamine agonists, according to new guidelines published on Monday.
irreversible neurodegenerative disorder characterized by tremors,
loss of balance, slow movements and difficulty thinking. The disease
is caused by a steady loss of the brain chemical dopamine and occurs
when the dopamine-producing cells in the brain that control movement
begin to die.
drug that boosts levels of dopamine in the brain. But over the long
term, this drug can cause involuntary movements of the mouth, face
and limbs, usually on one side of the body.
disease without causing these long-term side effects, particularly
when given to patients in the early stages of the disease, Dr.
William C. Koller, director of the division of movement disorders at
the University of Miami in Florida, told reporters.
maintain quality of life," he said. "[With dopamine agonists] you can
control the symptoms now and 10 years from now and patients are just
as functional, whereas with levodopa, patients experience side
effects [that may lead to] embarrassment and patients become socially
reclusive."
treating patients with the disorder should take into account their
individual needs. Very elderly patients and those who have difficulty
thinking might benefit from levodopa as a first-line therapy, he
said, as the drug is known to relieve symptoms rapidly.

Guidelines stress different drugs for Parkinson's

NEW YORK, Jun 11 (Reuters Health) - Most patients with Parkinson's disease should first be treated with a class of drugs known as dopamine agonists, according to new guidelines published on Monday.

Roughly one million people in the US have Parkinson's, an irreversible neurodegenerative disorder characterized by tremors, loss of balance, slow movements and difficulty thinking. The disease is caused by a steady loss of the brain chemical dopamine and occurs when the dopamine-producing cells in the brain that control movement begin to die.

Traditionally, patients have been treated with levodopa
(L-dopa), a drug that boosts levels of dopamine in the brain. But over the long term, this drug can cause involuntary movements of the mouth, face and limbs, usually on one side of the body.

Dopamine agonists appear to control the symptoms of Parkinson's disease without causing these long-term side effects, particularly when given to patients in the early stages of the disease, Dr. William C. Koller, director of the division of movement disorders at the University of Miami in Florida, told reporters.

"The key issue in the treatment of Parkinson's disease is to maintain quality of life," he said. "[With dopamine agonists] you can control the symptoms now and 10 years from now and patients are just as functional, whereas with levodopa, patients experience side effects [that may lead to] embarrassment and patients become socially reclusive."

Koller stressed that Parkinson's is a complex disease and doctors treating patients with the disorder should take into account their individual needs. Very elderly patients and those who have difficulty thinking might benefit from levodopa as a first-line therapy, he said, as the drug is known to relieve symptoms rapidly.

The guidelines are published in a supplement to the June issue of Neurology.

SOURCE: Neurology 2001;56:suppl 5.

Stem cell research gets nod, source of cells remains controversial

CMAJ 2001;164(12):1736 [PDF]

Click here for a FREE GIFT!

Hi all,
Here is the latest news on a ban on stem cell research at NIH. Some
sources reported Thursday that Bush was ready to call for the Ban, but
the word got out and all White House phone and Fax lines were swamped on
Friday with calls against the ban. Read the latest about different
opinions even within the White House at:

I have emailed at length with Bill Werre and just read James Taylor's email

Besty:
I couldn't of said this any better then you just did.What a wonderful
way to put it. At times things may look hard and times are ruff, but
together we will all help each other pull pass it all. You are a very
rich woman, you love life.
{{hugs]]
Vera

Hi Besty:
Welcome to the group. I just wanted you to know that my husband Fred
also has the swelling of the feet and also the red color, sometime
they even look purple. I try to get him his feet up, so that the
swelling will go down. I try to do this at least 3 to 4 times a day.
I help. What meds is your husband on? Fred's feet swelled really bad
when he was on flornif and the doctor took him off that and started
pro amatane. Also one time the swelling was really bad and the doctor
put him on a water pill.
The heat isn't good for people with MSA, so if you husband likes to
work in the yard, try taken him out in the morning before it get's to
hot.
Hope this is of some help
Vera

My sympathies to you and your family at this most
difficult time.
Melanie in OK

Kathy;
You have my sincere sympathy. Thank your for letting us know Bill passed on
to his new life. Keep in contact with all of us. I'm sure you have a
treasure of knowledge that may be helpful to us. Experience is a very hard
teacher where the student becomes more wiser than ever thought possible.
Take care and God Bless.
Mary Ann-
From: bill young <youngwp@...

Dear MSA support group........Very few of you will know our names as we have
not been involved on the internet much lately. My husband, Dr. Bill Young, was
diagnosed with MSA in 1995. We met many of you at the Montreal meeting and
also the Hawaii meeting. I am sorry to inform the group that my lovely Bill
passed away at home on May 24th. He went through this devestating disease with
such dignity and grace and I know in my heart that he was ready to have the
struggle with daily living over. Our thoughts and hope will always be that
those of you that have this awful disease will survive long enough for a cure
to be found. Fondly, Kathy Young

i have same symptoms and problems, but, alas, no answers. n spires

Betsy,
Your post brought tears to my eyes. I couldn't agree with you more.
I am grateful for every day I have with my husband and the rest of my
family and friends, here on this earth.
Thank you for reminding us all of the joys of day to day life.
Carol & Rob
Lexington, MA

As many people I have been flooded with all of the news and repeat
news on todays execution. I can not imagine the heartache and grief
that the families and friends have gone through the past six years.
For some reason or another my mind has studied on this man and all
that he thought he believed. From any thought or route that it may
take , it brings me back to one place. The time he has had to prepare
and say good-bye , request his last meal. All that were involved in
this tragedy were not given one moment.
Most of all that are involved in this group are at the other end of
the spectrum. How do we find ways to be strong , whether care-giver or
a victim of this disease? We do as the many from Oklahoma and all
invoved with this tragedy. Be there for one another to offer a
shoulder , share a tear , and support with prayer and faith.
God only knows the reason for this tragedy and why the ones we love
must suffer with this wretched disease.
I am thankful on this day to have all of my family and friends that
can enjoy lifes simple pleasures , the sunrise , a soft breeze ,
and just the sounds of life.
Though there may be many rough days ahead I know in my heart no one
has taken my time away or robbed me of my good-byes. I am blessed to
be able to spend time and care for the one I love.
To all of you I thank you for your support and advice. For what may
seem minor to others , can make possible more days of lifes simple
pleasures. Bless You , Betsy Roberts

Being new to this site I watch closely most all of the postings and
have gained a great deal of knowledge from you all. Charlie , my
husband has SDS and as he progresses to new phases of this disease of
try my best to understand and learn all to help him cope. We live in
the Cincinnati area and this past winter was extremely hard for him.
All that is hard for him mobility and circulation was made much worse
by the temps. Now as we have waited for warmer weather here again he
is in the same situation with heat. I have read all tips on helpful
ways to control his low blood pressure. Alot has helped. Is the
adjustment to these weather temps. because of his blood pressure and
the inability of proper circulation? He does not over-exert himself ,
it is just the gradual change from the house to just sitting outside.
I heart aches for him to have to adjust to not being able to just work
in the yard a little bit. Now we find that unless there is an ideal
temp. he has a hard time enjoying the home and yard he has loved for
years.
He also has started to experience swelling in his legs and feet.Mostly
on his left side , that is his weakest.He does have support hose and
along with watching salt intake to help with his blood pressure , he
does drink as much water and gateraide as he can. Some days his feet
are swollen and very red. Thank you once again and God Bless you all.
Betsy Roberts

Fred had his doctor appointment today, the meds are staying the same,
but the Neurologist is going to ask our Md to do a Pulmonary test and
X-rays because of Fred's breathing. He feel's something else is going
on. If nothing show's then he is going to request a sleep test.
Next week he goes to the Urologist again. He had the appointment last
week, but the Insurance was a dollar short and a day late and didn't
give the ok, till after the doctor cancelled the appointment . So we
had to reset the time and date.
Now we're we wait for the ok for the test.
Take Care
Vera

Hi helen:
I'm sorry I can help you more on the hallucinations' , Fred hasn't
had many. I understand that sinemet can cause some. You may want to
go to the search archive and put in hallucination and you'll come up
with a long list of letter on the subject or maybe someone else will
tell you more about it that has had this problem.
Take Care
Vera

Vera,
Like my list, I don't think Pam sees that many everyday. I see Juncos every
day during the winter, but not this time of year. Some birds I have seen
only once or twice in 28 years that we have lived here, like the Carolina
Wren. Woodpeckers are rare and may be here for a summer then leave for
years. I have heard them lately as we have a dying tree out back, but have
yet to spot one.
:o( I never got to see an Eagle hit a fish, but did see a hawk hit a rabbit
up in the mountains just west of us. I have seen Pelicans fishing in the
Chesapeake Bay. Get a paperback copy of "The Birds of North America" and
watch out the window especially if you feed them. I'll bet you have 40-50
checked off in no time.
Take care. Bill and Charlotte

Thanks for the info. Dave started having twenty second periods of sleep apnea, while in the hospital. He couldn't tolerate CPAP. The doctor thinks it is the disease process causing it.

Take care, Kathy

Jim,
At least you are getting messages now that I am back on 4.77 again. I forgot you
were running Win 3.1 on a 486. Our 486 died at Christmas :o( so I have no way
to
handle or read the 5.25 inch floppies anymore.
On the viruses - most are written for MS IE and not Netscape. In fact many of
the
macro viruses are written for MSWord - so I don't have to worry - I use Word
Perfect - like you, I feel if you know the software and it works, why change.
:o)
Although I do not use Magic Wand or Wordstar as a word processor any more :o)
Or
dBase.
Take care, Bill and Charlotte

this is awesome!!!!! thank you so much for sharing this site with us :)
you have gotta see this folks ... awesome ...
Subject: Fw: Amazing View of Earth at Night!
Check out the image at the web site below.
The image is a panoramic view of all the lights in the world as viewed from
the new space station.
You can scroll East-West and North-South. Canada's population is almost
exclusively along the US border.
Note Hawaii's islands and Bermuda shining brightly.
Also note how bright the Cayman islands and Puerto Rico are compared to
neighbors Cuba and the Dominican Republic.
See the Azores, off the west coast of Africa.
Check out the development of Israel compared to many of the Arab countries.
Moving further east, take a good look at the Korean peninsula which is the
most striking comparison between a third world country in the North and a
capitalist society in the South.
Not much light in Africa, and you see how empty Australia is. Amazing
picture! You will see how much we really have compared to the rest of the
world. Have a great day.
http://antwrp.gsfc.nasa.gov/apod/image/0011/earthlights_dmsp_big.jpg !
cheers
sheila
Too often we underestimate the power of a touch, a smile, a kind word, a
listening ear .... all of which have the potential to turn a life
around. --- Leo Buscaglia

A short time ago you requested a PSP Caregiver catalog from us. This catalog
was developed specifically to address the needs of people with PSP and their
Caregivers.
We are excited to announce that we have taken the ease of obtaining these
products even further! We have developed a Web Site specifically for PSP. It
is called http://www.pspcaregiver.com
On this site you will find all of the same products that are in our catalog.
In addition you will see links to other resources regarding PSP. What we
believe will be unique about this site is that we would like your input and
feedback regarding anything and everything on the site, specifically,
however, what additional products and resources you would like to see
available on pspcaregiver.com. We will do our best to fulfill all of your
requests.
If you find this site useful, please forward it to others who may be
searching for a way to find these products and services.
We hope you enjoy using this site and look forward to hearing from you.
Regards.
Your friends at Alimed.
Contact: info@...

Bill,
I have to partially disagree with the engineer. It may be that I should
update my software but that would not resolve the problem that we are
currently dealing with. Eudora 2.2 and Eudora Lite will read html and do a
number of other nice things. It will read any message you send directly to
me no matter which of the standard protocols you may use. The problem is in

Dear Vera,
Dad was on sinemet since jan 01. it seems like his hallucination during
sleep hasgone ( have this for years, first sign of MSA I guess). recently,
mom told me he is staritng to have the halluicnation back. doses of sinemet
was not changed. do you know what caused it? or how to deal with it?
Helen

Helen:
Fred has gotten the flu shot for the last three years. The Doctor has
him get the type that they have out for the year ,that they are
giving it. Also you may want to think about a pneumonia shot.
Take Care Vera

Thanks Charmayne;
I have 3 cats, one loves to catch and eat mice and birds. After looking at
this site, my baby birds are nestlings. They can not stand up on there own
yet and their back is totally bare. Pete said there was a third baby, it was
dead, he threw it on the other side of the road in a field. I wasn't sure
what to feed them so I opened up a can of tuna. Every time they eat, they
also poop. For breakfast they'll get a boiled egg yoke. Pete's daughter is
going to bird sit tomorrow, while I take care of Mother and pick some
suggested food for the babies.
About two weeks ago there was a dead black squirrel on the road. I stopped
to pick it up, (it's a long story why) anyway it was a nursing female. She
had 8 nursing tits. I felt so bad for the babies. There was nothing I could
do. There isn't a lot of black squirrels around here, mostly gray and small
red squirrels. Well you may think this is weird, but I ask God to send a
mother squirrel to the nest and adopt the orphans. Maybe he did or maybe he
didn't but I asked anyway. Even though I'm in my mid 40's, I sometimes feel
I'm still a child inside.
From: Charmayne <charmayne@...

Pam:
I think I would just love to get up everyday if It would mean I could
see so many birds the way you get to. Your list is so long. I was
lucky once I went into Canada to go salmon fishing at Port Alberni.
While I didn't get any salmon , I did catch a fish that I found out
weren't that good to eat, so I took it off the hook and threw it back
into the water. Out of nowhere came a baldhead eagle and hit the
water and took off with the fish I threw back. It was just beautiful
to see it hit the water and take off. Something I won't ever see
again, but something I will never forget.
Always
Vera

http://www.rivernet.net/~nbiggs/#recipe

Here is a great site about orphaned baby birds. It includes a 'recipe' for feeding.
With {{{Hugs}}}
Charmayne

--
Charmayne Bischel ~~ ~~ ~~ http://www.bischel.com
_ _ _ _
{\o/\o/} We are each of us angels with only {\o/\o/}
jgs /_\/_\ one wing - and can only fly by /_\/_\
" " embracing each other. " "

Nora,
Be thankful. You NEVER know what to expect from MSA/SDS. Are you on any
medication? Was it a drop in temperature or a drop in BP on standing? Are
you having any movement problems - clumsiness, stumbling, etc? How is your
handwriting? Any vision problems? Sleep problems? Fatigue?
It takes more than orthostatic hypertension to point to MSA/SDS. What tests
did they do? If you don't know, then ask.
Take care, Bill and Charlotte

Bill,
Oh what a wonderful yard and area you must have with all those birds in and
out. I have been a nut about birds for many years, Not a Bird Watcher
professinaly, but just for my own pleasure. Our yard is small but we have a
variety of wrens, mockingbirds, humming birds, robins and a whiporwill (sp)
that we see and hear. Our dogs just watch them and if they get too close to
house then stand up, never chase them. Oh yes, we had a dove nest and hatch
in our pyracantha bush (lots of thorns) this spring. Good to know there are
others out there that love birds.
Mary S.

Hi Kathy,
If you mean "Gerhardt syndrome" this is a definition:
"Sleep apnea due to vocal cord paralysis is sometimes found to be
complicated in patients with multiple system atrophy (MSA) including
Shy-Drager syndrome, and is known as Gerhardt syndrome."
Sleep apnea is very common in people with MSA. Is Dave doing better now
that he has the trach?
Hugs,
Pam

Pam, Jim, all:
Earlier today, Pete was out mowing the ditches, he drove the lawn mower over
to where I was. I was replanting a couple of pare trees after lasts years
winter kill. He had something in his cap he was holding out for me to take.
Oh my God! There ugly but cute. Two baby crows. I know your not sopose to
raise them, but my cats are not getting them. They must of got knocked out
of there nest in last nights wind and rain. They are still fuzzy and much to
young to be on their own. Pete said he was going to call the game warden for
a permit to keep them. Does anyone have experience in feeding baby crows???
I'm checking out the internet in a bit.
Mary Ann-
From: "Pam Bower" <pbower@...

Diagnosed with SDS in July 2000. Am begining to doubt this. WHY?
Symptoms are slow in raising thir heads (Maybe I should feel blessed).
I really am blessed, just confused.
Please let me know what to expect next and how often symptoms appear
(One at a time)?
Original symptom in 2000 was drop in temperaure upon standing. This
seems to have adjusted itself - BP is really good.
Really am confused - have had, recently, days of feeling 50 percent
better.
Have an appointment with doctor tomorrow (Monday).