Wiki articles

don't open the attachment!! snow white is a computer virus.

ann, from what i've read, this 'tale' is a hoax, altho one can never really
be too careful - -

I keep getting mesaages about Snow wh;ite and the Dwarfs.
It is titled HaHaHa
Has anyone else been getting them?
Ann from Soddy,TN

A stock clerk was sent to clean up a storeroom in Maui, Hawaii. When he
got back, he was complaining that the storeroom was really filthy and
that he had noticed dried mouse or rat droppings in some areas.
A couple of days later, he started to feel like he was coming down with a
stomach flu, complained of sore joints and headaches, and began to vomit.
He went to bed and never really got up again. Within two days he was
severely ill and weak. His blood sugar count was down to 66, and his face
and eyeballs were yellow.
He was rushed to the emergency at Pali-Momi, where he was diagnosed to be
suffering from massive organ failure. He died shortly before midnight.
No one would have made the connection between his job and his death, had
it not been for a doctor who specifically asked if he had been in a
warehouse or exposed to dried rat or mouse droppings at any time. They
said there is a virus (much like the Hanta virus) that lives in dried rat
and mouse droppings. Once dried, these droppings are like dust and can
easily be breathed in or ingested if a person does not wear protective
gear or fails to wash face and hands thoroughly. An autopsy was performed
on the clerk to verify the doctor's suspicions.
This is why it is extremely important to ALWAYS carefully rinse off the
tops of canned sodas or foods, and to wipe off pasta packaging, cereal
boxes, and so on. Almost everything you buy in a supermarket was stored
in a warehouse at one time or another, and stores themselves often have
rodents. Most of us remember
to wash vegetables and fruits but never think of boxes and cans.
The ugly truth is, even the most modern, upper-class, super store has
rats and mice. And their warehouse most assuredly does! Whenever you buy
any canned soft drink, please make sure that you wash the top with
running water and soap or, if that is not available, drink with a straw.
Disease Control in Atlanta discovered that the tops of soda cans can be
encrusted with dried rat's urine, which is so toxic it can be lethal.
Canned drinks and other foodstuffs are stored in warehouses and
containers get transported to retail outlets without being properly
cleaned. Please forward this message to the
people you care about.
(I JUST DID!)

Al does not get cold, but sometimes his feet and hands turn blue, I
elevate his feet for awhile.
He does complain about dry scalp, and skin, I use lotion on the skin and
use a shampoo with moisture in it.
He does not sweat. He was put on cranberry tablets,(2-3 times a day)and
a lot of water.
He did act out in his sleep but they put him on simemet long lasting at
night and he now sleeps well.
His main problem is dizziness all of the time, he is on florinef for the
low B/P.
I usually get him to take a nap in the middle of the day after lunch.
And that seems to help him get through the rest of the day.
Ann from Soddy,TN

Debbie,
Thank you for your kind reply. I don't currently take any medication,
but I will discuss it with the neurologist. I had taken Celebrex for
mild arthritis in the hip, but like antibiotics I have taken over
recent years for flus and the such, my hands acted up worse with the
cold burning feeling. I have not seen a movement disorder specialist
which I will also raise with the neuro. In the meantime, I'll take
your Mum's attitude as a good example and keep doing as much as I can.
Regards Michael

I am new to this forum. I have been ill for perhaps five years with
various symptoms. The most notable initially was cold hands like I had
handled dry ice. I still get this most days here and there. I also
have a heavy feeling in the legs. All of this has progressed to
constant cramp like feelings in the lower legs and what seems like
fasciculations which pop up randomly in different parts of the body. I
have also had neck and shoulder problems and a fair deal of lower back
pain / stiffness particularly first thing in the morning. One other
major thing is that tandem gait is impossible for me I take one or two
steps and overbalance. I also get mild episodes of light headedness on
standing at times and a feeling of high blood pressure, pounding heart
etc when I am lying down on occassions. A Sleep specialist has also
diagnosed that I have Sleep apnea. So I have made an appointment for
late March to see my Neuro again. I also get very fatigued most days.
My main question because I am still working full-time, is whether if
someone has MSA there is a particular point that it affects there
ability to work. I am definitely less productive and fall asleep on
the job, often early afternoon. I have to physically rouse myself
every minute or so. Also is there a pattern to progression of MSA or
is it different in most people.
Sorry to bother anyone, but I am just wanting to have some idea of
what is happening to me.
Regards Michael from Oz.

Michael, Welcome, though I am sorry you have to be here. I will address your
last question first -- the one about progression. MSA is a progressive neuro
disease, but it definitely progresses at different rates in different people
and there are a myriad of symptoms, some of which you will have, others not.
My mother Joyce was diagnosed with PD in 2/97, rediagnosed with MSA 9/98 and
died 11/00. Hers was among the most rapid I have seen. Anne on the list has
had this disease for over 20 years.
Sounds as though you have the BP problems seen in SDS and you want to
address this. The neck/shoulder/back pain is also a symptom some have. And
stiffness. I don't know whether you are taking any meds, but at least as
important is physical therapy. In addition, sleep apnea must be addressed.
That is certainly one reason for the fatigue during the day. Many on this
list use a machine at night and have felt much better during the day as a
result. Also, sleep apnea is dangerous but, luckily, treatable.
This disease affects everyone differently and everyone has different jobs,
so the question about how this affects one's working life has many answers.
My mother Joyce was terribly disabled and (I don't know how) managed to work
part time up until she fell and broke her hip. At the time, even she
couldn't read her handwriting and she often nodded off at work. It is what
got her up in the mornings and out the door. She held on to it as long as
possible.
Good luck with your appointment. Have you seen a movement disorder
specialist? Debbie

Jerry,
Just to add to what Bill has already said, there is also a
headache/shoulder ache referred to as a "coat hanger" headache
(because the pain is located as if there were a coat hanger directly
behind the patient) that is caused by low blood pressure. That can
usally be quickly rememdied by simply lying down, which raises the
blood pressure in patients with orthostatic hypotension.
Carol & Rob

I just shared this information with someone who asked me about it, thought
it might be relevant to a few people on this list as well who are still
searching for a proper diagnosis.
Note that there is currently a study at the NIH involving a Gluten-Free Diet
in Patients with Gluten Sensitivity and Cerebellar Ataxia
See:
http://clinicaltrials.gov/ct/gui/c/a1b/screen/ResultScreen/action/GetStudy?o
rder=3&xml_file_id=xmlfiles%2FWMCC__NCT00006492.xml%40csdb&JServSessionIdcs_
current=mh1fogaayk
Or if that link doesn't work for you just go to:
http://clinicaltrials.gov
and type in the word "ataxia" as the search term.
Regards,
Pam
-----
Gluten Ataxia is believed to be a cause up to a third of all cases of
"Sporadic OPCA" and not involved at all with the hereditary forms.
This note from a researcher into Gluten Ataxia in the UK says that "EVERY
PATIENT WITH SPORADIC CEREBELLAR ATAXIA OF UNDETERMINED CAUSE SHOULD BE
TESTED FOR GLUTEN ATAXIA"
He also mentions that there are two tests for anti-gliadin antibodies that
are required: IgA and IgG
Here is another link to more information on this research:
http://www.bmj.com/cgi/content/full/318/7200/1710
You or your doctor can contact him for more clarification, his contact
information is below.
Regards,
Pam
---
Marios Hadjivassiliou wrote:
For the last 6 years we have been researching into the neurological
manifestations of gluten sensitivity. We have published
extensively on the subject and suggested the term gluten ataxia to
describe patients with gluten sensitivity who present with cerebellar
ataxia.
Gluten sensitivity is an immune disease triggered by the ingestion of gluten
(found in wheat, rye and barley) in genetically susceptible individuals.
Contrary to traditional belief amongst physicians we feel that it can
manifest with just neurological dysfunction, ataxia being the commonest.
Studies on prevalence of these condition done by my group here in
Sheffield and at the institute of Neurology in London suggest that a third
of patients with idiopathic cerebellar degeneration have gluten ataxia.
Only a small number of patients have gastrointestinal complains. We have
ongoing research looking at the mechanisms of cerebellar damage. There is
evidence that antigliadin antibodies recognise epitopes on Purkinje cells.
Gluten ataxia may prove to be the commonest cause of cerebellar
degeneration which is potentially treatable by gluten free diet.
Improvement will depend very much on the duration of the ataxia
because loss of Purkinje cells is permanent. Even in such cases however one
may achieve stabilisation of the disease process. The diagnosis is made by
serum testing for antigliadin antibodies. It is imperative that antigliadin
antibody testing SHOULD INCLUDE IgG as well as IgA. IgG antigliadin antibody
is the most sensitive marker for gluten ataxia.
Unfortunately a lot of the labs are using antibodies that are more specific
for gluten sensitive enteropathy (also known as coeliac disease) such as IgA
antigliadin, antiendomysium and tissue transglutaminase antibodies thus
missing about 2 thirds of patients with gluten ataxia because they do not
test for IgG antigliadin antibodies.
Every patient with sporadic cerebellar ataxia of undetermined cause
should be tested for gluten ataxia.
I run a weekly clinic seeing exclusively patients with gluten
sensitivity and neurological problems most of which have gluten ataxia. I am
more than happy to review patients with so called idiopathic ataxia and test
them for gluten sensitivity. I am also happy to review patients with gluten
ataxia after diagnosis. The effect of gluten free diet on such patients is
currently part of our research.
Marios Hadjivassiliou
Consultant Neurologist
Department of Neurology
The Royal Hallamshire Hospital
Glossop Road
Sheffield, UK
S10 2JF
email: m.hadjivassiliou@...

Earl,
I don't know much about homebound help or aid and attendance but I think
you can find that information out easily. The eligibility office for the
United States is in Atlanta. Their number is 1-800-733-8387. I talked to
someone there and they said it would depend on the percentage of your va
disability. She also said that some states, and Texas is one, give
additional services that the Va doesn't give. She said that you should call
1-800-827-1000 which would connect you with your regional office and ask for
a Veterans Service Officer at the benefit center.
It is possible that the services you need would come under ChampVA. If
you want to look that up online it is
www.va.gov/hac/champva/handbook/chandbook.html
or you could email your questions to hac.inq@...
It sure is worth a try. It would be wonderful if you could get that
help. Every clinic in the VA has a social service representative. They would
certainly help you find out more. Let me know how it goes.
Jean (Phoenix)

I hadn't heard of that aspect before. Do you mean to imply that
Hospice expects a DNR (Do not resucitate order) for the patient?
Doug

san...I use trazodone and sleep usually lasts for 6 or 7 hours without
needing bathroom. I use anti bacterial soap and (1) and then wipes(2) before
I cath walla no utis in over 6 months, use a cpap at night and yes famiy
jokes about ny paranoia about things ..Dr. Gilman said the number 1 cause of
death in msa patients is sleepapnea. Personally i stopped breathing more than
I slept..he also said....msa wont kill you but symtoms will so a cpap seemed
like a good alternative to me..
.I go to bb games and baseball games and use wheelchair and handicap
seating,Bill is right / they litterally bend over backwards at least at g
tech.and turner, and I am a northern transplant. although perhaps i dont
naturally exercise like i should but i dont become a burden to family.....
in regards to ss...we paid for it why not get it. there are things we can do
at home ...nobody said "give up" greatest complement ever received was from
sister in Mi where i flew alone by the way was "u are more independent than
when u were walking" gave up driving though....really dont want to take any
one with me
great exercises that were sent yesterday!!! raked entire lawn in wheelchair
yesterday....exercise is everywhere if we look and are not afraid to try it
safely. try to remember Bills words "use or loose" and keep remembering it is
a question of common sense what we give up....enough for now getting tired
Tom From Atlanta

To all my new friends:
My wife has difficuly in trying to open a jar lid and other small
things that she use to could do. Is there a place to purchase
somethings like that could help her a little bit. I do all the
necesary work around the home now but she is trying.
Also I heard the other day, that my being a disabled veteran of world
war 2 that I might be able to secure some help in some way from the
Veterans Administration for my wife because of being homebound or Aid
and Attendance. Any one ever heard of this. Please advise if you
have.
Keep up the good work in your messages because I have found out that
if it was not for this group, we might not get much information. I
thank each one for your help and responses.
Earl

Boy, is that true! Rob and I are owned by two cats, and they really
rule the house.
Carol & Rob

Cats was. Thank you. I have passed it on to some more cat lovers of
my acquaintance.

Hi Bill,
No I didn't realize about the $5000 dependent care thingy. Well, that just
stinks. I doubt if Mark's caregiver would be interested in filling out all
the forms for the independent contractor. Guess I'll just keep doing what
I'm doing now and not worry about it. It's worth a million dollars to have
someone for Mark that I can trust and enjoy so we'll just "live and enjoy"!
Thanks for all the much appreciated info on the subject.
Please tell Charlotte we said "hey".
Take Care,
Judy

Dear Sheila,

Anyone who has ever 'owned' a cat can see how true the Thoughts on Cats was. Thank you. I have passed it on to some more cat lovers of my acquaintance.

Best wishes,

Jill Lucas

Hi Tim,

How did it come to pass that you were the subject of the article? Did you approach them or did they approach you? Any pointers for others to raise awareness in their communities?

Take care,

Pam

Although the reporter did not write enough about MSA, here's an article from the front page of the Connecticut Post this past Sunday. It was a three page article which is quite large for this widely distributed newspaper.

http://www.connpost.com/default.asp?puid=6773&spuid=6773&indx=696274&article=on

Tim

Hi Jim & Peg;
Thank you Jim for the balance exercise explanation. I'm thinking it's to
much for my Mother. She only stands to transfer or to walk with the walker
and an assistant, with her wheelchair being pushed right behind her. Wait a
minute, maybe if she was standing in-between the parallel bars in the PT
department and a safety belt on her and attached to the bars so she couldn't
fall. I think maybe I'll try that. She has a soft sponge ball for squeezing
to keep her fingers mobile(somewhat). I just had a thought, maybe we could
get someone to throw the ball to her in the pool while I spot her. I usually
hang on to her hands or the transfer belt while in the pool. Sometimes I can
just have my hands near by, just in case she starts going down, doing the
Ataxia stumble. You mentioned that Peg sometimes sits in the wheelchair and
you play catch with the ball. This is just fun, right? Not useful for
balance unless she is standing, right?
Have you come up with any solutions in getting Peg to PT?
Another thought is to call organizations around, nursing home, hospital,
Dr., home health services, the Veterans Association, ect... and let them
come up with some workable ideas. Keep delegating the problems! Give your
brain a break. Lower your stress level.
Mary Ann-

try going to:
www:momsup.com
hope that's it!
kaye

our bathroom was not wheelchair friendly, altho i do know of several on
another support list who rennovated their bathrooms so that a wheelchair
could fit. this is where the grab poles come in handy. there's a catalog
called M.O.M.S. that has all kinds of handy (and some quite inexpensive)
gadgets to make every day common tasks that can be forgotten about or taken
for granted. their web address escapes me.....but surely someone on here
knows of it.....there's an 800# and a web site.....
kind regards,
kaye

Hi All,
I've been reading several messages about sore shoulders and thought I'd let
you know about Mark's experience with sore shoulders. Mark has been
complaining that his shoulders are very sore and he can't raise his arms
above his head in any position. Last Monday we had a visit with his Rehab
Doc. and she gave him a cortisone shot in the right shoulder and he goes back
in two weeks for the same in the left shoulder.
She also ordered PT for 4 weeks, 3 times a week for rotator cuff tendonitis.
She thinks because he can't and doesn't use his arms it may be causing the
problem. The same PT guy came that was here two days after Mark was released
from the hospital. At that time he told us that there wasn't much he could
do for Mark with PT because there wasn't a goal to work for due to his
condition. Well, this time he was amazed at how much stronger Mark is and
now thinks he cannot only work on Mark's shoulders but is also going to do
some leg strengthening and transfer work.
Hopefully, the PT will help Mark and it also gives him something to look
forward to.
Kind of a round about way to get an order for PT but it worked.
Take Care,
Judy

the poles that i am referring to are just as you described, they go from
ceiling to floor. one by the potty chair and one by the favorite chair
(assuming they're not the same....<wink
place along the walls of long hallways. they look just like a banister. i
would also suggest they be professionally installed to make sure they are
secure.
kaye

Hi,
I just wanted to let you know about my husband, Mark and his emergency
situation last December. Mark also has at least 5 different doctors,
neurologist, urologist, internist, pulmonary specialist, rehab Doc., etc. In
December his airway closed and his lungs filled with fluid, I immediately
called 911 and the ER Doc. saw him first, Mark's problem was with lungs so
his pulmonary Doc. was notified only to find out that he was on vacation.
The island has a new pulmonary Doc. and he was available, Mark had never been
seen by him and he turned out to be the best Doctor we've found yet. All of
the other Doctors did stop in from time to time but the pulmonary was his
primary Doc. during the 17 days he spent in ICU.
I requested that all of Mark's info be copied to all of his Doctors so when
we started back seeing them they would have first hand knowledge of the
hospital stay. It worked like a charm. We've seen all of them and they had
the information and were able to adjust meds and treatments based on that
hospital stay.
Hope this helps, take care,
Judy Whittaker

Hi Suzanne,
You might try to talk him into using a wheelchair, Mark used to do the same
thing when he was "home alone" until we got the wheelchair. We found that we
could put the wheelchair beside the lift chair and installed a grab bar (not
the prettiest thing for the room, but, it worked) so that he could raise the
lift chair, hold on to the grab bar and lower himself into the wheelchair.
Of course, you have to make sure the wheelchair is braked.
Mark can't transfer by himself anymore so we don't have that problem now and
he does have a caregiver while I'm at work due to the PEG tube and trach.
GOOD LUCK!
Take Care,
Judy Whittaker

Mom has experienced problems with her vision (blurriness and double vision)
to the point that she can no longer enjoy reading (text or computer screen).
You may remember my earlier post about the 'Talking email' program. She saw
an young opthomologist who was hot to operate on a retinal problem. We were
all very anxious about surgery but also wanting mom to have any help that is
available... there are so many problems that can't be fixed that to identify
one that had a 'solution' was hopeful.
Thanks to the many friends on this list, we learned that there is such a
thing as a Neuro-Opthomologist. We called the Baylor MSA topgun who sees
mom and asked for a referral. He sent us to Dr. Rosa Tang here in Houston.
Mom's workup lasted four hours. None of that was waiting time. There were
numerous specialists who participated and did various tests and exams. My
sister was with my parents at the appointment and sent me a report. I have
clipped out the basics and include them below.
Based on the neuro-optho doc's recommendation mom had decided against the
surgery at this time. We are very relieved not to be facing a general
anesthesia episode!! If it hadn't been for the info we got here on the list
we most likely would have made the wrong decision about this. Thanks to all
who share!

It is my father who is diagnosed with MSA - OPCA type. My mother, also on this
list, is his primary caregiver. As is the case with OPCA, Dad's balance is
significantly affected. He spends the day in a lift chair. When he walks he
goes very short distance with the assistance of another, otherwise uses a
walker. During the daytime, he is alone while my Mom is at work. Although she
is home mid-day for lunch and assures that he has all he needs nearby, he still
gets up on his own.
He tries to stand for what I believe to be a combination of agitation and
difficulty with feeling comfortable in the chair, and wishing to use the
restroom. He does have a urinal to use from his chair (and a condom catheter
which he has not yet used during the day). Even so, he stands and lunges to his
walker, or the nearest wall. He falls frequently. Even after promising my
mother that he will not get up, he does.
As result of the falls, he has fractured his ribs several times, a few times
resulting in pneumothoraxes (sp).
Does anyone have suggestions as to how to maintain his safety in the home when
left alone? Or is the only option a home health aide?
Suzanne Grimmesey-Kirk, MFT
Quality Care Management
Voice: 884-1647
FAX: 884-1633

This is 10 year old research (note the date of 1991) but this suggests
that iron plays a role in neurodegeneration. Interesting that it's
taken 10 years to pick up on this again.
This reminds me very much of what happened with another
neurodegenerative disorder called Friedreich's ataxia. In 1998
researchers discovered that the protein missing(or reduced) in this
disorder is involved in transporting iron in and out of cells. Some old
forgotten research from at least 10 years previous also had found iron
deposits in the brains of Friedreich's ataxia patients.
Regards,
Pam
----
Title: Alterations in the levels of iron, ferritin and other trace
metals in Parkinson's disease and other neurodegenerative
diseases affecting the basal ganglia.
Author(s): Dexter DT; Carayon A; Javoy-Agid F; Agid Y; Wells FR; Daniel
SE; Lees AJ; Jenner P; Marsden CD
Address: Parkinson's Disease Society Research Centre, University
Department of Neurology, London, UK.
Source: Brain 1991 Aug;114 ( Pt 4):1953-75
Abstract: Levels of iron, copper, zinc and manganese were measured by
inductively coupled plasma spectroscopy in frozen
postmortem brain tissue from patients with Parkinson's disease (PD),
progressive supranuclear palsy (PSP), multiple system
atrophy with strionigral degeneration (MSA), and Huntington's disease
(HD) compared with control subjects. Total iron levels
were found to be elevated in the areas of basal ganglia showing
pathological change in these disorders. In particular, total iron
content was increased in substantia nigra in PD, PSP and MSA, but not in
HD. Total iron levels in the striatum (putamen and/or
caudate nucleus) were increased in PSP, MSA and HD but not in PD. Total
iron levels were decreased in the globus pallidus in
PD. There were no consistent alterations of manganese levels in basal
ganglia structures in any of the diseases studied. Copper
levels were decreased in the substantia nigra in PD, and in the
cerebellum in PSP, and were elevated in the putamen and
possibly substantia nigra in HD. Zinc levels were only increased in PD,
in substantia nigra and in caudate nucleus and lateral
putamen. Levels of the iron binding protein ferritin were measured in
the same patient groups using a radio-immunoassay
technique. Increased iron levels in basal ganglia were generally
associated with normal or elevated levels of ferritin
immunoreactivity, for example, the substantia nigra in PSP and possibly
MSA, and in putamen in MSA. The exception was PD
where there was a generalized reduction in brain ferritin
immunoreactivity, even in the substantia nigra. An increase in total
iron
content appears to be a response to neurodegeneration in affected basal
ganglia regions in a number of movement disorders.
However, only in PD was there an increased total iron level, decreased
ferritin content, decreased copper content, and an
increased zinc concentration in substantia nigra. These findings suggest
an alteration of iron handling in the substantia nigra in
PD. Depending on the form in which the excess iron load exists in nigra
in PD, it may contribute to the neurodegenerative
process

Greetings San!
(Do I have the name correct?)
You noted:
See if his doctor will prescribe something like Trazodone. It is an
antidepressant, but has the side effect (at low dosages) of safely
encouraging deeper and longer sleep. Take 1 hour before bedtime. Start at
50mg and work upto the effective dosage. Most people find relief at 50 to
100mg, a very few need to goto 150mg.
Sounds like it's time to start taking cranberry juice (or pills). This
increases the acidity of the urine, so helps ward off minor infections.
So you mom understands that low is normal, and 'normal' may well indicate a
fever. Sudden spikes in the body temp can bring about hullicinations. So,
your mom will need to insist that blood tests are done to check for
infections.
Again, he needs to be VERY careful about going out in the heat. Without
proper sweating, it can lead to SERIOUS overheating.
Does he use a CPAP/BiPAP unit? If he uses CPAP unit and has not been
checked recently, he may need to be checked again. His sleep specialists
should check to see if BiPAP provides better sleep, as often happens with
MSA patients. It costs more, but improves sleep tremendously.
Heavens yes! We all get that way. Sometimes we adjust for a while. But
the one constant about this disorder is that things change.
Regards,
=jbf=
John B. Fisher

Hi all
I just spent the afternoon going back over previous messages and found
alot of similarities with my Dad's illness .
He has the low grade temperature and is always cold though he keeps
the thermostat on 85 most of the time and I noticed that he never
sweats and has very dry skin all over but mostly on his hands and
head/scalp area. He also has sleep apnea and has a sleep disorder
that made him act out in his sleep and he was always kicking and
punching my mom till they stopped sleeping together. This has
stopped since taking the Sinemet for his Parkinson symptoms like his
neurologist told us it would. He has poor blood circulation and if
he sits for about 10 min or more, His feet turn bluish/purple and
we have to elevate his legs and massage his lower legs to get the
color back to normal. Does anyone have that problem? My Dad also
gets a raspy throat late in the day and slurred speech sometimes and
he gets tired at around 2 or 3 o'clock too. He gets these
overwhelming feelings of tiredness and has trouble getting more
than 4 hours of sleep at night like a few of the others I read do.
He has also suffered through many trips to the ER with infections that
are usually bladder/Kidney related.
My brother and I are going with him on Thursday to the neurologist
and we have some questions for him that concern emergency situations
and when to take him into the hospital. This concerns us the most
because we are not sure when or what doctor(he has 5 of them) to call
and if they are not on call then what? Do we take anyone that has
never seen my Dad and hope for the best? We really need a clear
outline of when , where(each doc belongs to different hospitals of
course) and who to call to get answers. We just want to know how to
best take care of him. I guess we are scared of doing something
wrong and not doing something quickly enough to help him. He has so
many problems that we are overwhelmed with them and who to call to
take care of them. Does anyone else feel scared like this?We just
want to keep him safe for as long as we can do so.
Take care and Bless you all, you are a Godsend

Mov Disord 2001 Jan;16(1):62-71
The auditory startle reaction in parkinsonian disorders.
Kofler M, Muller J, Wenning GK, Reggiani L, Hollosi P, Bosch S, Ransmayr
G,
Valls-Sole J, Poewe W
Department of Neurology, Hospital Hochzirl, Anna-Dengel-Haus, Austria.
[Medline record in process]
The auditory startle reaction to an unexpected loud stimulus is regarded
as a
brainstem reflex originating in the nucleus reticularis pontis caudalis
and
being distributed up the brainstem and down the spinal cord along slowly
conducting pathways. Auditory startle responses (ASR) have been reported
absent
or reduced in progressive supranuclear palsy (PSP), and delayed in
Parkinson's
disease (PD), but normal in multiple-system atrophy (MSA). For the first
time we
studied ASR in patients fulfilling the clinical criteria of dementia
with Lewy
bodies (DLB) (n = 8), a neurodegenerative disorder characterized by
cortical and
subcortical depositions of Lewy bodies resulting in parkinsonism and
progressive
cognitive decline. For comparison, we also investigated patients with PD
(n =
10), MSA (n = 7), PSP (n = 10), and age-matched healthy controls (n =
10). ASR
were elicited by binaural high-intensity auditory stimuli. Surface
electromyographic activity was simultaneously recorded from facial,
upper, and
lower extremity muscles. For each muscle, we assessed response
probability and
measured latency, amplitude, duration, and habituation rate. Patients
with DLB
had fewer and abnormally delayed ASR of low amplitude and short duration
in
extremity muscles compared to healthy controls. Furthermore, we confirm
and
extend previous findings of abnormal ASR in PSP and PD, and also
demonstrate
exaggerated ASR in extremity muscles of MSA patients. The different
patterns of
ASR abnormalities may reflect distinct types of brainstem dysfunction in
DLB.
PMID: 11215594

Pam,
We had NIH even looking at Charlotte's MRI and they said there was atrophy of
the
whole brain, not just the cerebellar pons or olives. Her movement disorder
specialist still considers it most likely as OPCA even though she has symptoms
of
all three. P.S. She has seen the two top movement disorder specialists in the
area, Johnathan Pincus and Linda Sigmund who are both on the Board of the
National
Parkinson's Foundation. Both say that it does not always show up on even an
enhanced MRI with the dye.
They do say that if only the pons are atrophied, it is almost surely OPCA. Both
also say "Who cares". :o) We too have tried many, many medicines. Last count
23
pills per day and 10 different medicines.
Take care, Bill and Charlotte

On the topic of diagnosis. Due to our growing frustration with an absence
of any kind of specific diagnosis beyond "some type of cerebellar
degenerative condition", my brother saw a neurologist in Indianapolis
for a second opinion just before he received his dx of MSA.
The Indy neurologist told him is local neurologist was doing everything
correctly, but he did diagnose either Ataxia Type I, Ataxia Type III or
Shydrager. He referred my brother back to the local neurologist (due to
travel considerations probably) for more tests to sort out which. At
the next visit with her, she revealed that she had already done tests for
Type I and III and she gave us the diagnosis of MSA. She indicated that
the Indy neurologist had apparently not noted those lab results in the
materials he reviewed from copies of my brother chart we took with us.
She subsequently ordered one more blood test which we understood to be
a intended to provide further validation of the MSA if positive? Does
this seem likely?
Jerry Cash

Ann N Y Acad Sci 2000;920:16-27
The alpha-synucleinopathies: Parkinson's disease, dementia with Lewy
bodies, and
multiple system atrophy.
Spillantini MG, Goedert M
Department of Neurology and Brain Repair Centre, University of
Cambridge,
Cambridge, UK. mgs11@...
[Medline record in process]
Parkinson's disease is the second most common neurodegenerative disease,
after
Alzheimer's disease. Neuropathologically, it is characterized by the
degeneration of populations of nerve cells that develop filamentous
inclusions
in the form of Lewy bodies and Lewy neurites. Recent work has shown that
the
filamentous inclusions of Parkinson's disease are made of the protein
alpha-synuclein and that rare, familial forms of Parkinson's disease are
caused
by missense mutations in the alpha-synuclein gene. Besides Parkinson's
disease,
the filamentous inclusions of two additional neurodegenerative diseases,
namely,
dementia with Lewy bodies and multiple system atrophy, have also been
found to
be made of alpha-synuclein. Recombinant alpha-synuclein has been shown
to
assemble into filaments with similar morphologies to those found in the
human
diseases and with a cross-beta fiber diffraction pattern. The new work
has
established the alpha-synucleinopathies as a major class of
neurodegenerative
disease.
Publication Types:
Review
Review, tutorial
PMID: 11193145

Jerry,
I agree with your brother, that it does no good to look for more opinions as the
only one that is completely accurate is autopsy. No one can do more for him
than to try to adjust his medicines for maximum relief from the symptoms. From
what you have said it seems as if his doctors are trying that.
Most public places are trying hard to offer handicap access these days. But as
you say, they need to have handicapped people in on the planning as some
engineers do not see the problems well. They do make an inexpensive travel
wheelchair, but pay for it don't let insurance buy the cheap one. Save that for
a custom made one when he needs it. He can ask for handicap seating when he
buys his ticket and they usually let the party (4-6 often) sit with him. At
Disney World we got to the front of the lines with Charlotte and we took the
grandson with us.
Usually Sinemet helps you walk, but it does have side effects. Unfortunately he
will have to quit work about two months before he can get SSDI. Then he will
have to wait 2 years before getting Medicare. Catch 22!
Take care, Bill and Charlotte

Kathy,
My husband, Warren has MSA/SDS and has a lot of pain in his shoulders/neck
area. We have found that 2 Aleve's in morning really gives him relief all
day. One of our Dr's suggested that, and I use it for arthritis in my
shoulders. You can ask your Dr to see if its okay to try it. Warren also
uses Vicodin but for massive headaches and not usually at same time of day
as the Aleve's. Hope this can be of some help.
Mary S.

Barb;
I smiled and chuckled all the way through it, but I KNOW my sister would not
like it.. I also knew some of the tool, not all. My husband is a carpenter
and tinkers a bit on his Ford. No apology needed.
My day is turning out ok. I just gave my mean old cat a bath. My ears are
still ringing from her hollering. We are having a snow storm up here with
wind and lots of drifting. I'm staying in doors.
Thanks, Mary Ann-

Neurology
Volume 49 Number 6 December 1997
Copyright © 1997 American Academy of Neurology
Multiple-system atrophy is genetically distinct from
identified inherited causes of
spinocerebellar degeneration
O. Bandmann MD
M.G. Sweeney BSc
S.E. Daniel MRCPath
G.K. Wenning PhD
N. Quinn MD
C.D. Marsden FRS
N.W. Wood PhD
University Department of Clinical Neurology (Drs.
Bandmann, Wenning, Quinn, and Wood,
and Ms. Sweeney and Professor Marsden) Parkinson's
Disease Society Brain Bank (Dr.
Daniel), Institute of Neurology, London, UK.
Article abstract--
Multiple system atrophy (MSA) is a neurodegenerative
disorder of unknown cause. The
only case-control study conducted in MSA patients to
date suggested a possible
contributory genetic component in the pathogenesis
of this disorder. The aim of this
study was to evaluate a possible overlap between
clinically or pathologically well-defined
MSA and other conditions with an identified genetic
defect causing spinocerebellar
degeneration in humans or mutant mice strains. The
spinocerebellar ataxia type 1 and 3
genes ( SCA1 and SCA3) were analyzed for a
pathologic expansion in 80 patients with
MSA to evaluate a possible overlap between MSA and
SCA1 or SCA3. Weaver mice and
lurcher mice are animal models for spinocerebellar
degeneration; both share pathologic
features with MSA. We sequenced the H5 pore region
of the human homologue of the
weaver mouse gene, hiGIRK2, in all our patients. In
lurcher mice, previous biochemical
studies have shown a decreased intracellular
response to insulin-like growth factor 1
(IGF-1) in the cerebellar cortex, and we thus
investigated the possibility of an allelic
association between MSA and the receptor for IGF-1.
In addition, we evaluated a
possible involvement of the ciliary neurotrophic
factor gene (CNTF) and examined the role
of HLA-A32 to clarify the conflicting data from
previous studies. No changes were
detected in any of the analyzed genes. Our studies
strongly suggest that MSA is an
autonomous syndrome distinct from identified genetic
causes for spinocerebellar
degeneration.

Recent Advances in Inherited Ataxias Symposium
National Institutes of Health
Bethesda, Maryland USA
March 27, 1998
SPORADIC ATAXIA
Presented by Mark Hallett, M.D.
Many types of Sporadic Ataxia are due to a known cause which is
included in
the following categories. There are many patients however who still
cannot
be classified at this time.
1. Degenerative
2. Stroke
3. Tumor
4. Toxic/Metabolic
5. Paraneoplastic
6. Auto Immune
7. Infectious/Post Infectious
8. Demyelinating
-----
1. DEGENERATIVE
These types of sporadic ataxia include:
A. MULTIPLE SYSTEM ATROPHY (MSA) is the most common and has three
variations:
i. Olivopontocerebellar atrophy (OPCA) - more cerebellar signs (ataxia)
ii. Striatonigral Degeneration (SND) - more Parkinson's signs
(bradykinesia (slowness) and rigidity)
iii. Shy-Drager Syndrome (SDS) - more autonomic signs
- PRINCIPLE CLINICAL FEATURES of any of the 3 varieties can include:
a. ataxia
b. parkinsonism
c. autonomic dysfunction
including:
- impotence which is a common first symptom in men
- dry hands (inability to sweat)
- orthostatic hypotension or postural blood pressure
(recommended to take blood pressure while patient is lying,
standing, and standing after 3 minutes)
- VARIABLE CLINICAL FEATURES
a. pyramidal signs
b. poor response to levadopa
c. tremor
d. dysarthria
e. dystonia
f. mild dementia
- PATHOLOGICAL HALLMARK
a. Glial Cytoplasmic Inclusions (GCIs) - this is a recent finding
which can be seen upon autopsy in the brain of MSA patients.
- LAB WORK for MSA diagnosis
a. Autonomic abnormalities
- skin sympathetic response (EMG)
- sweat test
- valsalva maneuver
- heart rate variation
b. Sphincter EMG
(this is a good indicator especially in men)
c. MRI, MRS, PET scans
B. PROGRESSIVE MYOCLONIC EPILEPSY
- ataxia is a prominent feature
2. STROKE
Several types of stroke can cause the symptoms of ataxia.
3. TUMORS
- At least seven types.
- MRI scan is the best diagnostic tool.
4. TOXIC/METABOLIC
A. Alcoholism
B. Post-hypoxic, hyperthermia
C. Celiac Disease (Gluten Sensitivity), anti-gliadin antibodies
- Ataxia plus or minus myoclonus
- Gluten sensitive enteropathy with malabsorption
- Ataxia can progress despite good diet
- Possible autoimmune disorder with antibodies formed against gluten
- LAB WORK for Gluten Sensitivity diagnosis:
- look for anti-gliadin antibodies in ataxias of unknown origin
D. Childhood hyperammonemas
E. Vitamin Deficiencies
1. Thiamine (B1)
2. B12
3. E
4. Zinc
- Ataxia due to vitamin deficiencies are treatable and should not be
overlooked in diagnostic workup.
F. Endocrine
1. Hypothyroidism
2. Hypoparathyroidism
3. Hypoglycemia (insulinoma)
G. Drugs/Toxins
1. Drugs
a. Phenytoin
b. Lithium
c. Serotonin syndromes
d. Cyclosporin
2. Toxins
a. Thallium, Bismuth subsalicylate
b. Methylmercury, methylbromide
c. Toluene
5. PARANEOPLASTIC
These ataxias are related to cancer. Various antibodies are detectable:
A. Anti-Purkinje cell antibody
1. Anti-Yo (tumor of breast or ovary)
2. Atypical anti-cytoplasmic antibody (Hodgins, lung, colon)
B. Anti-neuronal antibody
1. Anti-Hu (lung, breast, prostate)
2. Anti-Ri (breast and ovary)
3. Atypical Anti-Hu (lung, colon, adenocarcinoma, lymphoma)
C. Anti-CV2 antibody
- ataxia and optic neuritis
- small cell lung carcinoma
- CV2 antigen
- improvement with removal of tumor
6. AUTO IMMUNE
A. Antibodies to GAD (glutamine acid decarboxalese)
- pure ataxia syndrome
- possible peripheral neuropathy
7. INFECTIOUS/POST INFECTIOUS
A. Encephalitis/meningitis
- Rubella, H. Influenza
B. Acute Post Infectious Cerebellitis
- Varicella (chicken pox)
C. Crutzfeld-Jakob Disease (CJD)
8. DEMYELINATING
A. Multiple Sclerosis (MS)
9. NON-CEREBELLAR ORIGIN
A. Neuropathies
1. Miller Fisher Syndrome (a form of Guillain-Barre Syndrome (GBS))
2. Paraneoplastic/autoimmune
3. Idiopathic
B. Spinocerebellar tract lesions
10. OTHER
A. Chiari Malformation
B. Abscess
C. Hydrocephalus
D. Superficial CNS nemosiderosis
DIAGNOSTIC PLAN

Not a silly question at all and I'll answer it as it is right down my alley
because this was my mother-in-law's diagnosis.
OPCA = Olivopontocerebellar Atrophy. The main symptom is ATAXIA or loss of
balance and coordination. See: http://www.ataxia.org Usually this is
diagnosed via an MRI and observations are made of loss of cells in the
olives, pons and cerebellum (all parts of the brain). There are both
hereditary and non-hereditary (sporadic) causes of OPCA. The known
hereditary types are now called Spinocerebellar Ataxia types 1 through 14
--
see a clear pattern of it being passed along in each generation. Gene
testing is now available for about a half dozen different forms of SCA. Read
more about the hereditary ataxias here:
http://www.geneclinics.org/profiles/ataxias/details.html
There are numerous causes for sporadic (non-hereditary) OPCA including things
like alcoholism, brain tumours, vitamin E deficiency... etc. The connection
with OPCA and MSA lies in SOME (about 25%) of the cases of
SPORADIC(non-hereditary) OPCA only.
There are 3 forms of Multiple System Atrophy (MSA).
1. Shy-Drager Syndrome (SDS) - main symptoms related to autonomic dysfunction
2. Striatonigral Degeneration (SND) - main symptoms similar to Parkinson's
disease
3. Sporadic Olivopontocerebellar atrophy (OPCA) - main symptoms are due to
cerebellar dysfunction (ataxia)
Read more about MSA here:
http://www.parkinson.org/atrophy.htm
A consensus committee of researchers met in 1996 and again in 1998 to address
issues with the names of these disorders. Previously it was believed that
SDS, SND and OPCA were all separate diseases. This is not the case as
researchers have observed the same abnormality in the brains of patients who
died with all three diagnoses. Because of this researchers have lumped them
all together under the umbrella term Multiple System Atrophy. What tends to
happen is that a patient may first have symptoms from one of the three
different types but later on as the disease progresses "Multiple Systems" are
affected... thus the name Multiple System Atrophy.
If your main symptoms are ataxia only and you do not have any autonomic or
parkinson's-like problems then most doctors will hesitate to tell you you
have MSA... they will likely only diagnose you with OPCA. Some doctors also
have not caught on to the newer terminology so all of these names will likely
be in use for many more years to come.
I hope this helps... please feel free to ask more questions.
Take care,
Pam

Neurology 2000 Aug 22;55(4):527-32
Evolution of sporadic olivopontocerebellar atrophy
into multiple system atrophy.
Gilman S, Little R, Johanns J, Heumann M, Kluin KJ,
Junck L, Koeppe RA, An H
Department of Neurology (Drs. Gilman and Junck, M.
Heumann, and K.J. Kluin),
Department of Biostatistics (Dr. Little, J. Johanns,
and H. An), Department of
Physical Medicine and Rehabilitation (K.J. Kluin),
and Division of Nuclear
Medicine, Department.
[Medline record in process]
OBJECTIVE: To determine the percentage of sporadic
olivopontocerebellar atrophy
(sOPCA) patients who later develop multiple system
atrophy (MSA). METHODS:
Observations of the course of 51 sOPCA patients 20
years of age or older
initially evaluated in an ataxia clinic over 14
years and followed at 3- to
6-month intervals for 3 months to 10 years (median
2.5 years, interquartile
range 5 months to 4 years). RESULTS: Seventeen
patients evolved to develop MSA,
whereas the remaining 34 manifested only
progressively worsening cerebellar
ataxia. The features of the MSA cases included
autonomic failure and
parkinsonism in 10 patients, autonomic failure
without parkinsonism in six, and
parkinsonism without autonomic failure in one. Using
survival analysis methods,
the authors estimated that 24% of subjects in this
population will evolve to MSA
within 5 years of the onset of sOPCA symptoms (95%
CI 10% to 36%). An older age
at onset of symptoms and a shorter time from onset
of symptoms to first
presentation in a neurology specialty clinic were
both highly predictive of
evolution to MSA. Six of the 17 patients who evolved
to MSA died 4 months to 5
years after they had met diagnostic criteria for
MSA. The estimated median
survival time from time of transition was 3.5 years.
In contrast, death occurred
in only one of the 34 patients with sOPCA who did
not evolve to MSA. Autopsy
examination of all six patients with MSA who died
confirmed the diagnosis.
CONCLUSIONS: Approximately one-fourth of sporadic
olivopontocerebellar atrophy
patients will evolve to multiple system atrophy
within 5 years, and this
transition carries a poor prognosis for survival.
Older age at onset of ataxia
and earlier presentation in a neurologic specialty
clinic predicted transition
to MSA.
PMID: 10953186, UI: 20411665

Jerry,
I exactky understand how you feel. It is heart breaking to see my dad sometimes
have trouble doing normal things that he does before. He use to love going to
do grocery with mom every Sunday, and make dinner for all of us, now, we head
eat out to the resturant. I think it is very important to let you dad know that
we are all here no matter what. Hold on there, you are not alone.
Helen

Thank you for the responses. We too find that we have intensified what was
already a close
family relationship. We were able to take in an ice hockey game this
weekend -- but he had
difficulty in negotiating the steps in the arena (getting back up to
concourse as opposed
to getting down to the seat). By the time we got back to the concourse
level he was
depleted of his energy reserves and it was a struggle to walk back to the
parking garage.
Even so, I have to say that the arena staff recognized our difficulties
quickly and gave
great assistance in terms of directing us to elevators, etc. Until you are
faced
with disability access issues personally, you have no real understanding of
the issue.
You may be able to park close to the door, but you still have to walk long
distances even
when you get in the building. We're starting to consider a light wheel
chair to take with
us on outings so that he can extend his duration before the fatigue sets in.
He has been prescribed meds for depression, but is reluctant to take them as
yet because
he says hes not really "all that depressed." Seems to me he should go by
his own feelings
in that regard.
My brother is continuing to work (at least for now) and his employer has
offered to reduce
his hours to 32 hours a week so that he can both work and keep his
"full-time" status for
insurance, etc. The employer and his co-workers are being extremely
supportive. He is
initiating his disability application process at the recommendation of his
neurologist,
but will apparently be denied initially because of his employment
continuing.
The intense fatique is more of a complaint for him than the ataxia. He
simply gets
drained of all energy at points. He is taking a medication (name eludes me)
which the
neurologist prescribed for the fatigue.
Finally, he says his co-workers are all wanting him to go to Mayo Clinic to
seek a second
opinion on the dx. He says he does not want to chase after a new diagnosis
because he's
seen two neurologists and has a consistent diagnosis, but he says he would
go to Mayor,
Vanderbilt, Johns Hopkins, etc.if it meant possible treatment could be
offered - which it
apparently cannot be offered as yet. I agree with him. Any advice to the
contrary?
Jerry

Er, how about those ugly warts, and ingrown toe nails, and ...
Yeah, right. Any one that's dealing with a list like that is curing people
of too much money. And frankly most people like this can LEAST afford it!
This type of avarice is without a doubt sinful.
Regards,
=jbf=
John B. Fisher

Pam
I got the following (which includes my answer) this morning. Marge has changed
her letter (and facts somewhat) to suit some of my objections. But the woman is
now curing blindness, MS, deafness, and MSA as well as Candida infections.
Don't tell her about CBGD.
Take care, Bill and Charlotte

Jim and all,
yes I have done those over the years and they have helped immensely. I
worry about the day care and more restricted places of service because,
they often find excuses on why therapy was not given or shorten in time.
I did not say every place does this. I can only write mine and my
family's experiences - both good and bad.
Bob can not take me to therapy either. He has to work too. He is only 46
years old. At first and still sometimes gives that uneasy who is taking
'my nancy' wherever' look. Age is on my side though. From the get go,
years being in bed literally to rehab to nursing home to walking with a
walker, ect. We have found it the least anxiety and cheaper to hire a
HHA through the senior center , nursing home, agency. I have done the
hiring and trying to get bob to get more involved with the agencies.
They listen to the spouse and family members. If my husband signs a
typed note it gets done. We also can not rely on one Aid. We finally
found an agency that realizes this. U and ur wife have to make that
decision. IF u both decide alternative place, then find one that does
not subcontract the therapists. I find 3 times alternate days for
therapy is the most help- m, w, f or t, th, sat.
Exercises- Like I said the ones u described worked nicely for me. Also,
they have Thera- balls here in the States and Europe that I know of. I
purchased mine from Sammons Preston catalogue. They were about 20 and 25
dollars each. The base to keep the ball steady was 26 dollars. I do not
do these without someone physically next to the ball and me. Also, the
PT and OT used the Balls with me when I was enrolled in therapy for the
past 5 years. Also, water therapy was great.
Mirrors and verbal cues to correct my posture help a great deal. Simple
statements like- HEAD or Shoulders are examples. May sound strange in
public, but who cares:) Placing my hand on my below my navel and another
to tuck my butt in help me align tactually my posture.
CD music I find to be the best to alleviate boredom with exercise. I use
a remote or a head set.
Getting into the mindset that others have to help and do things for me
and my family has made life allot easier emotionally.
For us, I thgt maybe I can get senior services based on my spouse being
a senior before me in 4 years. i.e. community senior centers.
Ankle high Reeboks seem to be the best for my balance and ankle
stabilization and on alternate days half leg braces for walking/movement
of my legs. Medicare for those in the States wondering- pays for these
fully.
I asked an orthesitis (sp?)about shoes and have tested just about every
kind:) Wide base high ties with great insoles are the optimum for feet
and ankles for me.
nancy m.

Folks,
Ran across this in the InterNAF email list. I've not yet tried any of these
products, though I may start exploring them. But hope it might help others.
http://magnifiers.org/links/Download_Software/
Oh, yes. I have no affliation with any of these companies or the website.
Just passing along something that appeared to be helpful.
Regards,
=jbf=
John B. Fisher

Maryann,
The most significant balance exercise was playing catch with a light ball
about the size of a small volleyball. We picked up a small, light, plastic
ball that's easy to grab. We stand about 15 to 20 feet apart and throw the
ball back and forth. First of all this gets Peg to put her hands up to
catch the ball. Then she has to throw it back from various positions. Once
she gets this down, you throw the ball to her upper left side and then to
her upper right side. This forces her to move to the left and to the right,
getting her balance correct each time. I've seen her standing longer while
doing this than while doing anything else recently. If Peg isn't up to
going outside to do this, we will let her sit in a chair and will throw the
ball back and forth from about five to eight feet. Peg seems to enjoy
playing with the ball.
The other balance exercise was to walk up and down a hall sideways. This
seems to help her move her feet outside their normal tight pattern.
These seem like simple things but no other PT person had suggested them and
we didn't think of them.
Peg and Jim from Guam
From: "maryann pedersen" <mrspedersen@...
Subject: Re: Question on Physical Therapy
Jim;
This might not be the best thought but it's late and I did think it.
Would Peg qualify to go to day care for a couple hours a day at a nursing
home where she might get PT. Sometimes ya just gotta do what ya gotta do.
Jim, when you find the time, I would like to know about the new exercises to
improve balance. Anything and everything to help my momma. .....We are
having a real winter snow storm, blowing and drifting, about a foot of snow
just on the deck. There's about 4' of snow on the west side of the house and
deeper on the north. Pete will have to move as much as possible before the
spring thaw, or we might have a damp basement.
Mary Ann-
********************************
*** 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.
********************************

Doug,
You may find the information that you are looking for about Hospice at this
site.
www.hospicefoundation.org/virtual_html/request.htm

Hi all;
My chiropractor tells me to use a warm moist heating pad for temporary pain
relief. It seems to work for me.
Mary Ann-

Doug, My mother Joyce (71, dx MSA 9/98, died 11/00) had home health
assistance and before she died was ready to get someone full time. The aides
during the days that my parents settled on were great for showering,
dressing, preparing food, and helping with household necessities. They also
accompanied my parents when they went out. Evenings without them were not
easy.
I think my parents' greatest mistake was not getting someone earlier, but my
mother resisted for a long time. Once she found some aides she really liked,
she was glad she had made the decision to have someone come in to help.
There is no way my dad could have continued to handle things the way they
were going.
Good luck. Debbie

Could some of the folks here who receive Hospice service tell
us a little about what sorts of things they do for you?
For example, if a caregiver needs assistance to get the patient
to the doctor for routine visits would Hospice be available with
another pair of hands and a strong back?
Does anyone have experience with hiring a live-in assisant, or
any advice there?
Doug

Hi Earl,

My husband has MSA and he has a lot of joint pain. He complains most of shoulder pain. His back gets so weak that he stoops when he stands very long. The doctor wanted to change his pain med from darvocet to vicodin but Dave wants to wait as long as he can before going to a stronger med. Hope things work out for you.

Take care, Kathy

There has been much discussion lately on crying, weeping, being emotional.
My mother Joyce (71, dx MSA 9/98, died 11/00) was very emotional. What
struck me more than anything, though, was that her crying (either over
something sad or happy) was different. Everyone agreed she sounded like a
wounded animal. Don't know whether this is the case with anyone else. Debbie

Bill, and all;
I was wondering how high should the blocks be at the head of the bed?
Mother's Dr. also prescribed putting blocks on the front end of her bed,
that was last Monday. So far no blocks! (Talking about a Nursing Home here)
I don't believe the Dr. gave a size to the blocks...What is the range of
block sizes. Thinking Pete could make them and I'd take them in tomorrow,
that is if the snow plows have cleared the snow.
Mary Ann-

Mary Ann,
It is the head of the bed that should be up. Generally 4-8 inches is enough.
More than 8 inches needs a stronger stable setup. We use a 4 X 4 right now on
the hospital bed and it works well as we can also raise the head. If you have
wheels on the bed, you have to take more precautions.
I didn't think people from Minn. worried about snow :o) Get out the skis :o)
Our snow is almost totally gone, except for shady spots on the North side of the
house.
Take care, Bill and Charlotte

--- Hi
Yes I have been getting the same complaint from my Dad about his
eyes. The left one runs like crazy especially when he eats and then
later his eye feels really dry and we have to put drops in them. It
must be the desease. His eye doctor said something to him that when
he chews it effects his tear ducks. I don't really think
optometrists really even know what MSA is. Most doctors and nurses
are only vaguely aware of what it is or don't know at all. We have
gotten some really blank faces when we say SHy drager to them. My
fathers back hurts him too and his legs ache really bad especially at
night. He can't seem to get comfortable at all some days.
Take care

Dennis,
If you get two copies of this email let me know as I am not sure you joined the
list. Do you have sporatic OPCA or inherited OPCA? If you the sporatic kind,
everyone on this list has similar problems.
Take care, Bill and Charlotte Werre

--- Hi Nina,
I am also a new member and I was struck by what you said about your
Dad crying. My Dad started crying alot about a year ago and it used
to really get to me cause he never cried before. He mostly did it
when I would visit him and I thought that maybe I was somehow
upsetting him. I later learned from my Dad that the reason was the
same as your father's. He was deeply touched by my caring and
helping him that he cried whenever he saw me. He still does today
but now I know why and just hold his hand or give him a hug and don't
worry about it. His emotions seem stronger since he was diagnosed
with Parkinson/shy drager. He even laughs harder now which is nice
to see him happy. Good luck with your Dad and take care of yourself
too. It can be overwhelming taking care of someone with this both
emotionally and physically. There are only 2 of us to care for
Dad and we are lucky he is not in the worst stages of this desease.
Remember to take a break yourself at times. Your much better
dealing with his illness if you do. Take care

couple weeks now. At first, I wasn't sure how helpful the list would
be. There seemed to be a strong focus on chocolate. But after
reading for awhile, I'm amazed at how often other people comment on
exactly the same issues that my father is dealing with.
very distressed by this, assuming it was a sign that he was upset or
depressed, but a couple times he stunned me by saying he was crying
because he was happy. I couldn't imagine why someone who is having
as many problems as he is would be so happy that they would cry
because of it, but it finally sunk into my head that he is touched by
all the help that people (myself, my three brothers and my Mom - who
has been divorced from Dad for 20 years) have been giving him. Our
family has never been very close, but helping Dad has really pulled
us together. But even with 5 of us, it's still a challenge to take
care of him.
neurologist changed it to "Parkinson's Plus Syndrome." Last month,
we went back to the neurologist and I asked how many types of
Parkinson's Plus there were. He said 17. I asked if he had any idea
which of these 17 types my Dad had. He said probably Multiple System
Atrophy since the syptoms seem to match. Since then, I've been
puzzleing over why the doctor wasn't more definitive. Why didn't he
say definitely Multiple System Atrophy? It's seemed to me, based on
everything I've read, that the symptoms are a perfect match. But
after some of the things I've read here, I can see why the doctor
wouldn't want to rush to a conclusion since it's so common for people
to be misdiagnosed.

Persons having a condition called Arnold Chiari have what is called "drop attacks". I think what happens is the cerebral spinal fluid pathway becomes blocked and causes momentary drop attacks. Persons with ACM also have forms of dysautonia.

There are probably other conditions which might cause it too! His doctor should have already ruled out any of the other conditions that might cause "dropping".

Your Dad is fortunate to have you on his side, keep up the good work!

later and hugs,

cindy

Celeste,
Are you monitoring your liquid intake??? Not just what you put in the glass,
but what you actually swallow?
Take care, Bill and Charlotte

MY name is Dennis Wells , would like to talk to people with
OPCA. YOUR FRIEND DENNIS MY ADDY IS 50163@...

Hi all,
The Virtual card for you thing is just another hoax - see
http://service1.symantec.com/sarc/sarc.nsf/html/Virtual.Card.2.html
I did not check the others, you need to check them before sending stuff like
this.
Take care, Bill and Charlotte

Sorry I offended you with the poem reference.
I thought it was cute because I knew all of the tools from working with
my dad and could see the humor in it.
Have a lovely day. Barb

http://Vmyths.com/hoax.cfm?id=222&page=3

Hi to all of you out there (Again... [INLINE] )

Maybe somone know about any new/expirament medicen for MSA that need to be tested ?

Or maybe there are any Doctors around the world that looking after people for any of their

research / tests for MSA ?

Thanks,

Itzik.

Jim:
Sorry to hear that Peg isn't getting her P/t either. Fred had it, but
the doctor's haven't ok it again. I'm not sure why. few days Fred
couldn't go because of the fall that he had to the back. So I don't
know if this is why they haven't ok it again.
The p/t that he had helped with the upper part of the body, but did
nothing for the lower part. It think he did better with the pool p/t
but they also stopped that. We're doing what we can here. Will be
talking to the doctor on the next visit to see what can be done.
I hope that someone else will have the answer to the question you
asked, sorry I couldn't help more.
Always
Vera

Barb:
This mighty mouse isn't the one I have picture in my head. Mine is on
the way to save the day. Remember him? Do you think this one will?
Take Care
Vera

Earl:
My husband has the dry eyes. The doctor gave him drops to put in
them, also told him to get an moisture eyes from the store to help
keep them from drying. I wonder if maybe some of the meds that he is
on may make the eyes dry. You may want to try the moisture eyes for
your wife.
Always Vera

Fred get's the weakness later in the day about 4pm it
starts.Sometime it's because of the b/p dropping, but not all the
time. The doctor up'ed the pro-amatine thinking that it would help,
but he is still getting weak around the same time. Tonight he went to
bed about 9pm because he was feeling so weak. I take him on the 12th
to the doctor to see how he is doing with the change. I really don't
think that it has made any different. It does seem to help if he
takes a long nap in the afternoon, but not always. With this illness
you just don't know.
Take Care
Vera

Barb;
Thank you so much, this is just what I need. But the girl in the tool room
is way to nasty for my sister. She wouldn't even read it, let alone recite
it to a group of seniors.
I think I have enough sites to find something she can use.
Thanks again, Mary ANn-

Well the verdic is in, I have and bladder and kidney infection, the
culture comes in next week to see if we have me on the correct "Bug
killer medication" After taking another round of Septra (the same
stuff they gave on 1-26) my infection, was back within 2 1/2 weeks. So
I have a feeling I might show the need for another antibiotic instead
of the Sulfa. But having an infection really wipes me out. I just
today, 48hrs after Septra finally have no water retention. Just joint
aches and stiffness, low grade fever gone also. So MSA patients
remember what infection can do to you symptoms!
Celeste

This happened to me last year in December I actually started just
suddenly falling down. For me that was the being of Parkinsonism,
I progressively got worse then they started me on Mirapex in March
and I finally got back up and moving by the end of March and
released to drive again, later we had to add a little Sinemet and
Amatadine but all is well! I can type again, write again, walk
again, my balance returned and I am a happy camper now!
Celeste (MSA with Parkinsonism & OI)

2 Bad Virus
A new virus has just been discovered that has been classified by
Microsoft (http://www.microsoft.com/) and by McAfee
(http://www.mcafee.com/) as the most destructive ever! This virus was
discovered yesterday afternoon by McAfee and no vaccine has yet been
developed. This virus simply destroys Sector Zero from the hard disk,
where vital information for its functioning are stored. This virus
acts in the following manner: It sends itself automatically to all
contacts on your list with the title:
"A Virtual Card for You".
As soon as the supposed virtual card is opened, the computer freezes
so that the user has to reboot. When the ctrl+alt+del keys or the
reset button are pressed, the virus destroys Sector Zero, thus
permanently destroying the hard disk.
Yesterday in just a few hours this virus caused panic in! New York,
according to news broadcast by CNN (http://www.cnn.com/). This alert
was received by an employee of Microsoft itself. So don't open any
mails with subject:
"A Virtual Card for You".
As soon as you get the mail, delete it. Please pass on this mail to
all your friends. Forward this to everyone in your address book. I
would rather receive this 25 times than not at all. Also: Intel
announced that a new and very destructive virus was discovered
recently. If you receive an email called:
"An Internet Flower For You",
Do not open it. Delete it right away! This virus removes all dynamic
link libraries(.dll files) from your computer. Your computer will not
be able to boot up.
Also I was send the virus:
"HAHAHA Snow white"
2 times this week so watch out for that one too!

Jim,
Medicare is being a pain in the #$$ about physical therapy. I imagine the
insurance companies are taking their cue from Medicare. Medicare will not pay
for more PT if you do not improve! Our doctor will ask for a new round about
every six months and it gets us about 8 sessions (twice a week for 4 weeks).
Then Medicare steps in and says no more. These are done at home if the patient
is considered bedridden. I have heard that Medicare in some areas considers a
patient who goes to the doctor, a "mobile" patient. But our neuro consideres
any patient that requires a full assist transfer immobile. So we play the
game. So far we have not had a major problem getting a few sessions, but this
last time we only got about 4 sessions.
Unfortunately the PT can not see any difference, but after a few sessions, I do
notice that Charlotte is slightly more flexible. She also attempts to help
more, but it goes away in about 2 weeks. Right now we have all the exercises and
the aide that comes in twice a week does them with Charlotte. That helps, but I
do pay most of the aide out of pocket.
Take care, Bill and Charlotte
=========================================

In a message dated 2/25/01 4:41:09 AM, ralsk@... writes:
<< http://search.netscape.com/cgi-bin/search?charset=UTF-8&search=poetry

Have fun. Barb
http://www.poems.com/tooldkoc.htm

Hi,
Although Peg and I haven't been writing much lately, we are following the
discussions on the list and we add a response when we can. We appreciate
the sense of helpfulness everyone brings to the list and we want to greet
everyone.
We do have a specific question. Peg's doctor recently prescribed some
additional physical therapy and occupational therapy. In four sessions the
physical therapist did point out a couple of new helpful exercises to
improve balance. She helped teach them to the people we have help take care
of Peg. However after the fourth session, the therapist said that Peg's
main problem had to do with initiation of a movement. She then said that
such initiation was a neurological problem and that there was nothing that
physical therapy exercises could to to help with that. Therefore she said
she could not offer Peg any more physical therapy.
By the way, on Guam, physical therapy and occupational therapy is no longer
offered in the home. To get physical therapy, a patient has to be brought
to the hospital.
Has anyone else had such a diagnosis? Are there any comments? Are these
forms of therapy offered in the home elsewhere? It is a great inconvenience
for me who has to leave work three and four times a week on a round trip of
over 20 miles just to take Peg to PT and OT. By the way, on Guam Pacificare
now refuses to pay for regular in home nursing visits.
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.
********************************

How about some fun ones. The Girl in the Tool Room is cute
http://www.tech-sol.net/humor/poetry.htm

Hi All kinds of stuff in here if you have time to look.
Just click the bookmark.
Barb
http://search.netscape.com/cgi-bin/search?charset=UTF-8&search=poetry

Bernice, Thank you.
Need more.
Mary ANn

[INLINE]

Oh Bill, do you suppose the rats want to be almost human?

Barb

Earl.
I will bet her eyes are sensitive to the light. My husbands were very sensitive on some days. He used a dry eyes eye drops when his eyes were dry. He had a hard time blinking enough to keep the eyes moist from the natural tears.

The ache in the back sounds familiar too.

He also had leg cramps. Calcium helped those things. And potassium.

Being in a position that is not easily changed really bothered him.

Do you have a vibrating lounge chair? That helped him too. And massage.

Can she do some light and easy exercises?

This stuff makes for a lot of misery.

Good luck in keeping her comfortable.

Get some rest both of you.

Have a lovely day tomorrow.

Barb in Arlington, Texas Wife of Ralph who was dx in '95 and released 7/27/00 after a hard fight and lots of misery.

Here is a hug for both of you.
[INLINE]

Now here is a ethics question! The research would allow study of human brain
disease without harming humans. But is it Frankenmouse :o) Beware of those
Abby Normal brain cells :o)
Take care, Bill and Charlotte
Reuters
Saturday, Feb. 24, 2001
Scientists Craft Mouse with Human Brain Cells
SAN FRANCISCO (Reuters) - U.S. researchers have
produced laboratory mice with human brain cells,
marking a
potential step toward developing treatments for
human brain
disease like Alzheimer's but promising to fuel
fresh debate
over the evolving ethics of bioengineering.
The research at California biotechnology company
StemCells
Inc . breaks new ground by demonstrating that
human brain
stem cells can be induced to grow within a
mouse's skull,
scientists said on Friday.
"We are not recreating a human brain. We're
really just trying
to understand how these stem cells can function,
and how they
can be used in the treatment of specific
diseases," said Ann
Tsukamoto, vice president of scientific
operations at
StemCells Inc.
Irving Weissman, a Stanford university professor
involved in
the two-year research project, said the next step
could be to
produce mice with brains made up almost entirely
of human
cells -- although he said there would have to be
a thorough
ethical review before this step is taken.
"You would want to ask the ethicist what
percentage of the
brain would be human cells before you start
worrying, and if
you start worrying, what would you start worrying
about,"
Weissman said.
The California study involved isolating human
stem cells in the
laboratory and then introducing them into mice.
As the mice
matured, the human stem cells -- "master cells"
that can
develop into any other type of cell -- grew into
a full range of
specialized cells throughout each mouse brain.
"It looks like human cells can follow the
developmental
instructions put in by the mouse brain. They are
making human
components in what is clearly a mouse brain,"
Weissman
said.
The researchers believe that these mice could be
used to test
treatments for human brain diseases such as
Parkinsons and
Alzheimer's, although these tests have not yet
been
undertaken.
Tsukamoto added that the experiment also
demonstrated that
StemCell Inc's process for isolating and
developing human
stem
cells was viable, and that cell banks could be
established for
future transplantation into humans.
"We're of course moving this into the development
phase, and
looking at which disease indications these cells
would be best
used for in preclinical trials," she said.
Both scientists stressed that their research,
while marking a
new breakthrough in the controversial world of
stem cell
research, was in no way aimed at blurring the
lines between
human and animal.
But Weissman added that he had already requested
a review
panel to look at the research to determine if
there may be
ethical problems in taking the work further.
"It is not the objective to go make mice with
human brains,"
Weissman said. "(But) it is in the domain of the
ethicists, not
the experimenters, to figure out what our limits
are."

Just received this in the same mail as your note and thought this might be
appropriate.
Michigan
Choose a City
Yesterday~Today~Tomorrow
Yesterday I met a stranger...
Today this stranger is my friend.
Had I not taken the time to say hello,
Return a smile, shake a hand, or listen,
I would not have known this person.
Yesterday would have turned into today
And our chance meeting would be gone.
Yesterday I hugged someone very dear to me.
Today they are gone...
And tomorrow will not bring them back.
Wouldn't it be nice if we all knew tomorrow would be here?
But this is not to be.
Take the time TODAY to give a hug, a smile, say "I love you."
JUST FOR TODAY...
Smile at a stranger;
Listen to someone's heart;
Hug a loved one;
Tell someone you're thinking of them.
Drop a coin where a child can find it;
Learn something new, then...
Teach it to someone else.
Look a child in the eye and tell them how great they are.
Don't hold a grudge.
Don't be afraid to say, "I'm sorry".
Don't kill that spider in your house, he's just lost, help him find his way
out.
Look beyond the face of a person, into their heart.
Make a promise, and keep it.
Call someone, for no other reason than to just say "hi"
Show kindness to an animal;
Stand up for what you believe in.
Smell the rain, feel the breeze, listen to the wind.
Use all your senses to their fullest; cherish all your TODAYS.
Today I thought about you and I smiled.
Take Care ~ enjoy all of your todays! "Yesterday is the past,
Tomorrow is the future,
Today? It is a gift.
That's why it's called the Present."
*****************************************************************

To everyone that responded to my plea for advice regarding my Medicaid
dilemma, thank you.
Just wanted to let you know that I have filed for an appeal. Will keep you
posted on what's happening, but for now we are staying right where we are.
I enlisted the help of an ombusdman and they are helping us out.
Thanks again for all the response.
Jean and Chrissie

Hi all;
Mable's appointment in Mpls went well. Dr. Zwiebel will start her on 25/100
Sinemet bid. He said nothing about the itch caused by Proamitane and or
Flornif. He recommended putting blocks on the front end to raise the head of
her bed. Dr. Zwiebel said nothing really works well for balance, so he
didn't perscribe anything even tho she has a tendency to fall backwards when
standing unassisted. Which is only at the Dr's. examine. Mom heard the Dr.
say she would never walk without assistance and has been depressed over it.
The other night she had a vivid dream about her closest cousin, that
something was very wrong. She was sick all day, nothing would stay in her
stomach. Until I called up the cousin and had them call her. Everyone was
fine at her cousins house. The next day Mom was eating well and feeling much
better. I made Mom a painted glass window hanging with flowers and birds,
she loves it. I couldn't wait until Mother's Day. Can't keep a secret that
long.
My sister who is a police officer has to entertain some senior folks on
Friday with with appropriate poetry. She is begging for some quick help. I
need to get it to her by Sunday afternoon. So please send me something!
Mary Ann-

Greetings Bernice!
Well, my ISP ate my mail, so this response is a bit late getting
there. (I checked egroups, since I didn't get mail for a day or two).
You mentioned the story about your granddaughter, and you noted:
And they also bring wisdom. Though times are tough, though we face
lots of trials, they almost instinctively reach out to help others.
Sometime we loose that lesson. But life is so much sweeter when we
do try to help others.
Thanks for sharing that memory. It is a very special one, indeed!
Regards,
=jbf=
John B. Fisher

Greetings Itzak!
Itzak, I was wondering that myself. I seem to have the cerebellar form of
this. I also get the sudden weakness. I will also be interested in the
responses from others. It's an odd feeling. Not that my muscles are weak.
It seems more as if the signals are not getting through. I have to think
harder about controlling my arms and legs.
By the way, for me, this seems to com