Wiki articles

Sigh! I see my typing is 'interesting' today. Sorry, Barbara! At least I
didn't make it 'Barbar'! ;-)
Regards,
=jbf=
John B. Fisher

Hi all,
Has anyone here heard of feeding tubes placed anywhere other than the stomach?
It seems to me that I heard of one going directly into the intestine, but I
don't remember who said it.
Take care, Bill and Charlotte

John,
Pam and I have discussed this "alphabet soup disorders" subject offlist. Both
of us are looking (Pam more than me) at other lists to try to find differences.
As far as caregiving - there does not seem to be any major difference. Some
have more dementia and less OH - but I see no major differences. :o) Until
they have a cure for one, we have to concentrate on helping the symptoms.
I am an engineer and a bent pipe is a bent pipe. Granted, how the pipe bent
will matter to me when I go to design another structure in the future. But that
is looking for clues on the failure, and unless I can pinpoint the exact cause,
I will just strengthen the pipe. I strongly subscribe to the KISS method of
engineering design - that is Keep It Simple Stupid. While it does not always
result in the least expensive or lightest product, it does last longer in most
cases.
Take care, Bill and Charlotte
=================================================

Greetings Barabar!
You noted:
Hmm... Not 'faint', but weak would be a better description. Well, not
really weak, more as if I had increased problems getting signals from the
brain to the legs. Muscles are fine, they just don't answer the call to
action! The call to arms ... or would that be legs? ;-) Ataxia increases
quite a bit. But I do get very dizzy after eating. Probably the same
thing, just slightly different manifestation since I have the OPCA form.
And yes, I understand the stares and the like this tends to bring. I'm
starting to learn to use my hiking staff if I go eat. Might not need it
going into a restuarant, but almost always need it on the way out.
Barbara, thanks for sharing this. It always helps to know how others act
and react to very common situations.
Regards,
=jbf=
John B. Fisher

Pam,

This is a great addition to the "Links" page.

Take care, Bill and Charlotte

Jane,
Sales tax is different from state to state and in some cases even county to
county. Our town is only about 5 miles by 4 miles, but has a huge number of
restaurants because we have no extra tax on restaurant meals as the county does
(5.5%). I don't think Pennsylvania has a sales tax at all, or maybe it doesn't
have a sales tax on clothes. Maryland has a higher sales tax than Virginia, but
does not tax food except in restaurants.
I don't mind paying tax on soft drinks. But I object paying tax on necessities
of
life like food and medical supplies. Seems ridiculous to me to tax people
because
they are sick, especially when you are cutting taxes on cars and cannot afford
roads.
P.S. We pay income tax on Charlotte's SSDI - about $1600 out of $8000 per
year.
Take care, Bill and Charlotte

Barbara and Patricia,

I find the same thing with Charlotte. Even though she does not have OH as bad as Ken (she gets by on 2 florinef per day), she still has trouble after eating. It also helps when she eats 5 smaller meals per day, instead on three big meals. The wheelchair has been a great aid.

Take care, Bill and Charlotte

==============================

Click here: Pharmaceutical Research and Manufacturers of America - Search
for Cures - Directory of Prescription Drug Patient A

Patricia:
Whenever Ken tried to stand after eating, he would feel faint and
sometimes pass out. It seems that blood pressure drops after eating, and with
Shy-Drager syndrome that can be a serious problem. Ken began to hate eating
in a restaurant because he could never be sure about walking to the car after
eating. After we got the wheelchair, we found that if he didn't try to stand
for about half an hour after a meal, he would be all right. Even when he
didn't use the wheelchair all the time, he ate in it so he wouldn't have to
stand up to leave the table. That has worked for quite a long time.
Barbara Smith

Jane,
Rigidity is the the reason Charlotte takes Sinemet and Comtan. She never had
tremor. Other meds used by people on the list often are:
Florinef and/or Midodrine for orthostatic hypotension
Zoloft, prozac or wellbutrin for depression (and more meds)
Trazadone for depression and to help sleep
Baclofen is sometimes used for things like toe curling and muscle spasm pain
there are several more used by list members
Amantadine is sometimes used for various reasons - it seems to help Charlotte's
dyskinesia, but it is also considered an anti-viral medicine.
Prilosec or prevacid for acid reflux
There are more, but I think these are the most popular meds on the list. If
your patient has any of these symptoms ask your doctor if they think the med
listed might help
Take care, Bill and Charlotte
=======================================

http://www.msnbc.com/news/514354.asp?bt=nm&btu=http://www.msnbc.com/tools/newsto\
ols/d/news_menu.asp

Yes--in some states, state employees, like federal, are not in the Social
Security system. At age 65, our health insurance plan requires us to sign
up for Medicare. There seem to be various ways that works, but the
retirement plan coordinates with Medicare in coverage and determining
benefits. Jerry was 58 when he died in 1999. I'm 58 now, so haven't paid
a lot of attention to it yet, too much other health insurance stuff to
attend to! Sometimes I feel I spend half my life on paperwork! Many in
this group may feel the same way.
On the sales tax--some medical supplies seem not to be taxed, others are.
Sometimes it involves having a prescription, but not necessarily. Perhaps
there's a list of what is non-taxable with a prescription. I'd have to
look at receipts to see what was what. Food is not taxed, but some things
people call "food" are. Again, I'd have to look and see what things that
includes. Soft drinks?
Jane

Hello Everyone!
The time has come upon us to have our first
Central
Indiana Multiple System Atrophy/Shy-Dragger
Syndrome
Support Group Meeting!
The Central Indiana Area MSA/SDS Support Group meeting
will
be held at 1 PM. (for approximatly 2 hours!)Saturday
January 13, 2001 at
The Unitarian Universalist Church of
Indianapolis.
The church was very gracious in providing me the
facility
January 13th., despite the fact that I am not a
member.
The church facility is located at
615 West 43rd Street
Indianapolis, IN 46208
Parking is available!
I shall provide refreshments however, feel free
to
bring a "covered-dish" if you so desire!
Directions:
Coming from the North:
Travel south on Meridan Street to 46th Street.
Make a
right turn onto 46th Street. Take 46th Street
(West)until 46th Street Dead-Ends and Sunset
Avenue.
You will see the campus of Butler University. Go
South
on Sunset Avenue to 43rd Street. Make a right
turn
onto 43rd Street. Travel a half block (west)and
you
shall see the church sign and parking lot!
Coming from the South:
Travel North on Meridian Street to 38th Street.
Make a
left turn onto 38th Street. Travel west about
(two)
2.0 miles to Clarendon Road. Make a right turn
onto
Clarendon Road. Travel North on Clarendon Road to
43rd
Street. Make a right turn onto 43rd Street.
Travel a
half block (east)and you shall see the church
sign and
parking lot!
Coming from the West:
Travel east on 38th Street (you may pass the
Indianapolis Art Museum)If this is the case,
Clarendon
Road will be the next stop light pass Michigan
Road!
Travel east on 38th Street until you see
Clarendon
Road. Make a left turn onto Clarendon Road.
Travel
North on Clarendon Road to 43rd Street. Make a
right
turn onto 43rd Street. Travel a half block
(east)and
you shall see the church sign and parking lot!
Coming From the East:
Travel West on 38th Street pass Meridian Street.
Travel west about 2.0 miles to Clarendon Road.
Make a
right turn onto Clarendon Road. Travel North on
Clarendon Road to 43rd Street. Make a right turn
onto
43rd Street. Travel a half block (east)and you
shall
see the church sign and parking lot!
The meeting will be held in the "Common's"
Meeting
Building. There will be signs directing you to
this
area.
Please contact me at my email garyjoyc@...
or
Please leave a voice-mail message at
(317)327-4970,
Saturday January 13, 2001 I will have my
cell-phone on
just in case anyone becomes lost or needs
assistance.
My cell-phone telephone number is (317) 501-4899
This is an informal meeting to discuss the
direction of our new support group. I look
forward to
meeting everyone!
I appreciate everyone's support.
Sincerely,
Gary B. Huddleston

Jerrie,
If balance and coordination problems are determined not to be parkinsonism
or actual Parkinson's Disease, then I'm not aware that medications can
help. I wonder about the rigidity--maybe someone can comment on that. If
Bob does not have any or at least any serious orthostatic hypotension, then
he doesn't needs meds for that. (More salt in his diet could be tried
first, such as drinking bouillon). Bladder or bowel problems can be helped
with meds (sometimes it takes a lot of trials to find the right
solution--watch this list for ideas). Anxiety and/or depression can be
helped with meds. Pain of various kinds can be helped. In saying all
this, I don't mean that solutions are always easy to find or that they work
100%, but there are things to try.
Obviously, a person might need meds for unrelated or already existing
conditions, for example, diabetes.
Some people like to add vitamins or herbal things to their diet--that's
been discussed here--but you do need to be careful about that. You might
want to use a multivitamin (standard, not high doses of anything),
especially if Bob doesn't get a varied and adequate diet.
It's frustrating to feel you can't DO anything to help him, but I know you
ARE doing what you can, that is, helping him to have the best life possible
in difficult circumstances.
Jane

Re:
Doug, you might want to try:
http://www.geneclinics.org/profiles/ataxias/
See Table 2 in that article for average age of onset. Also note the
'clinical features' section for more information about some of the
distinguishing features. Finally also note that the number of SCAs have
increased to SCA14. Plus a host of others.
Hope that helps.
Regards,
=jbf=
John B. Fisher

Mary Ann,
My father is the one with MSA. I've been a part of this list for several
years now to gain info about and for him. You might also see me post on
speech, swallowing, and voice info as I'm a speech therapist.
Unfortunately, there are people on the list in their 30's who are dealing
with MSA directly. This list is made up of all ages and various interested
parties which is why it's helpful for so many people.
Rose

Hi Vera
Not only was he a nice young man, but an informed one. Our salesman did not
know about it. I only knew because of a friend at work got one one they
bought their van and her husband has MS. I would try to get it even thought
your van has 20,000 on it. They may honor it for good will advertising. Judy

write your congresspeople/senators ... these rules are Catch 22 .... if she
were a veteran .. she could get a wheelchair ..
my sister,whose husband is in a wheelchair becuause he has no use of his
legs, was told by the VA that they won't provide a scooter unless you
have heart or lung problems ....
my daughter, who is a PT. prescribed a scooter for a heart/lung patient and
was denied by Medicare because he had use of his legs ...
go figure....

Not to get everyone all fired up on the general topic of the Catch 22 that
Medicare puts people in, but I have some questions. I was told at the
nursing home that, while Mom cannot walk and therefore needs a wheelchair,
Medicare will not provide her w/ one if she ends up in the basic care area,
but if she improves enough to go to assisted living or home, medicare will
provide one for her. Mom is being "kicked out" of the skilled/therapy area
because she isn't participating enough in the therapy, which pretty much
sinks her chances of improving enough for assisted living or home discharge.
Does anyone know a way to qualify for a wheelchair when the patient's
condition is too low functioning for asst living, but not qualifying for
skilled care? Second question: where can I do some pricing of various
models of wheelchairs? The occupational therapist said she would give me
Mom's measurements.
Thanks, ML

This was the warning about Phenylpropanolamine found in cold medicines and
diet pills:
http://www.foxnews.com/health/110600/ppa_fox.sml
It mentions that people should instead take cold medicines containing
pseudoephedrine instead HOWEVER pseudoephedrine is also dangerous to people
with MSA. Please ask your doctor before you take any over the counter
medication.
Regards,
Pam

ONE DAY AT A TIME

"The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles but to live in the present moment wisely and earnestly."

~~ Buddha ~~

I will have to unsubscribe for a few weeks while my computer is reformatted and I visit my brother out of state. See you in a couple of weeks. Everyone take care. My thoughts will be with you.

Karen

Mary Ann,
First of all - usually a doctor who is a "movement disorder" specialist is up on
these disorders. Many geriactric doctors are also up on them.
The thick phlegm is a sign of dehydration, is she drinking (and swallowing) her
full 60 or more ounces of liquid per day? The thick phlegm could also be a
swallowing problem.
If you go to the
http://www.egroups.com/group/shydrager
site and click on messages - then search this archive and type in PPA, you
should find old messages about the subject.
From that same site - click on "Links" - then General MSA Information - the 6th
and 7th ones listed are good to take your doctor - both on diagnoses.
Take care, Bill and Charlotte

Mary Ann,
The thick phelgm may be caused, at least in part, by not drinking enough
liquids (non-caffeinated items)and/or getting enough hydration in one way or
another.
Rose

Pam,
Thank you very much, now I understand. My mom was diagnosed with SDS.
I've read so many people with MSA, I just wanted to know the difference.
Thanks again.
Love
Laurie

Barb Pond,
Since many of these "natural supplements" can cause severe side effects or drug
interactions, I see nothing wrong with a prescription to get them with Medicare
money.
The one listed in the email "echinacea" has the following warnings on one of the
sites which sells it:
Use of echinacea is discouraged during pregnancy and for people
with tuberculosis or
autoimmune problems
Do not use echinacea continuously for more than a few weeks.
Do not give echinacea to children younger than two years old;
start with minimal
doses for older children and older adults.
Should not be used by those who are allergic to plants in the
sunflower family
In addition there is some indication that prolonged use can cause liver
problems. Therefore you should have a blood test often if you are using the
supplement. Most of the scientific studies of this herb, show NO positive
effects over a placebo. And the small positive effect was offset by about the
same percentage of negative side effects.
Other supplements can raise your BP or cause erratic heartbeats. They can also
thin your blood or make anesthesia work too well and put your lights out for
good. Remember tobacco is a "natural substance" as is marijuana. Should
Medicare pay for you to smoke tobacco?
Let's get real folks. If the government will not pay for feeding supplements
through a tube, why should they pay for something that may harm the person -
with no benefit to their health. A double blind study is required for
legitimate medicines, if a "natural substance" can not pass that requirement, it
should not be paid for out of tax dollars.
Take care, Bill and Charlotte

Hi Doug,
There are actually over a dozen hereditary ataxias. I think this is
probably the best summary around:
http://www.geneclinics.org/profiles/ataxias/
There is a chart included chart that shows range of age of onset.
Regards,
Pam

Hi Maryann,
There are lots of articles about Multiple System Atrophy on our LINKS page
that you can print out and share with your doctor.
Go to http://www.egroups.com/links/shydrager
Sign in with your email address and password
If you don't know your password go to http://www.egroups.com/remind
Let me explain MSA in another way. You know the 3 flavoured icecream called
Neapolitan.. it's got vanilla, chocolate and strawberry all mixed together?
If you take one scoop of that icecream and put it in a dish, then take
another scoop and put it in another dish and compare the two dishes. You'll
notice that there is not the exact same amount of vanilla, chocolate and
strawberry in both of the dishes.
Multiple System Atrophy is the same as the Neapolitan ice cream. There are
three flavours included in MSA
1. SDS - Think of it as the strawberry ice cream
2. OPCA - Think of it as the vanilla ice cream
3. SND - Think of it as the chocolate ice cream
Whether someone is told they have SDS or SND or OPCA they all have one scoop
of Neapolitan ice cream in their dish. They all have Multiple System
Atrophy.
If their symptoms are mainly ataxia they have mostly vanilla ice cream in
their dish. If their symptoms are mainly Orthostatic hypotension they have
mostly strawberry ice cream in their dish. If their symptoms are mainly
tremors they have mostly chocolate ice cream in their dish. If they have
symptoms of all three then they might have equal amounts of chocolate,
strawberry and vanilla in their dish.
Regards,
Pam

fyi, my husband john, diagnosed w/OPCA in 1992, was not really on any
medication either throughout the 8 yr course of the disease. he was on
zoloft, an anti-depressant....oddly enuff, this was initially prescribed
because his neuro at the time thought it might help some with the balance!!
he kinda figured if he could "ease" john up a bit.....anyway, lo and behold,
it turned out that he was clinically depressed so the zoloft actually helped.
<who wouldn't be depressed w/this disease??
john was also prescribed sinemet and again, it was thought that his choking
episodes MIGHT be triggered by a tremoring of the throat muscles....however,
after 6 months, an increase in dosage, and still no improvement, it was ME
who told the doc, get him off that. i later found out from this group that
sinemet can sometimes cause hallucinations and i do believe this was the case
w/john, altho i didn't recognize it at the time. it was only when i thought
back at some of the odd behavior.
the original neuro in 1992 told us that unfortunately there was no known cure
or treatment and there didn't prescribe anything. so i do not think it is
unusual at all for your PWPSP to be med-free. in fact, he/she is probably
better off. i do know that many on this list <as well as another list i
belong to
regards, all!
kaye

Thanks Pam,
I have spent some time looking looking for information on the
hereditary ataxias. IIRC there seem to be eight different ones
(different genetic causes) indentified. Any source that I have
found that addreses the age of initial onset only gives that
information for 2-3 of them . Where information _is_ available on
earliest age of onset it is quite young, starting in infancy for
some and maybe teens or early twenties for others. But for about
half of these I have found no information on age of onset.
Do you know of any studies or references that would provide a bit
more information on this point?
Doug in Greenbelt, MD, USA

disorders known by several names... Spinocerebellar ataxia is the
newer term but older terms include Marie's ataxia and Hereditary
Olivopontocerebellar atrophy. Often if a person has the ataxia
symptoms doctors are unsure initially if they have the hereditary form
or MSA-C or a whole host of other disorders that have ataxia as the
main symptom. Doctors are often hesitant to give a diagnosis of
MSA-C just based on the ataxia symptom. They will often wait several
years to see if the patient develops any of the autonomic or
parkinson's symptoms as well... this makes it more clear that it's
actually MSA.
case I've left some doubt, you should note that MSA is NOT a
hereditary disorder but if ataxia is the most prominent symptom
genetic testing is advised to rule out the hereditary OPCAs.

This came up in a lunchtime discussion with two of the doctors
at the Cleveland MSA conference last Fall.
The brain retains an ability to 'rewire' itself and compensate for
damage well into old age. So when patient has a condition that
slowly causes loss of neurons the affected part of the brain may
have lost 75% of the neurons before the first symptoms appear.
So if we assume that the desease progresses steadily (averaged over a
large number of patients) since its initial onset, and observe that
patients on average survive 7 - 10 years or more after the first
symptoms appear then it seems reasonable to extrapolate backwards
and suppose that the desease process began 25 or thirty years
before the first symptoms.
If this is so, then one has to look back 25 or 30 years before the
first syptoms to try to identify what caused or triggered the
desease process. This makes it very difficult to identify the
cause, even if these assumptions are correct.
My own speculations follow:
This helps to explain why the earliest observed onset for MSA is
for patients in their mid to late twenties.
That the initial onset is more typically at the age of 50 and above
tends to implicate a cause that is related to something that happens
in young adulthood, about the time people enter the workforce, start
driving, become sexually active, start drinking etc. It is also about
the time that the normal maturation processes in the brain are
completed.

Diane, Glad to hear they found out what is happening. I am sure he is exhausted and this entire episode has taken a lot out of him. Give him time. In the meantime, there is a plan and that is always a good thing. Keeping him in my thoughts, Debbie

Some MSA patients do not respond to PD drugs and, so, there is no benefit
taking them. There are some other drugs people take for rigidity
(Bactofin??) that may prove helpful. My mother Joyce (71, died 11/00) never
received a marked benefit from any of the PD drugs, but continued with some
throughout because trying to come off them DID cause more discomfort. She
always claimed that she felt WORSE about 20 minutes after taking a dose. In
11/99 a doctor tried taking her off all of her drug gradually and she didn't
do well at all.
If drugs are of no benefit, exercise and PT always is. Debbie

Beware!
This looks to be the work of a spammer trying to 'harvest'
valid email adresses.
I realize that these questions are blunt but my concerns are
sincere. Do you know the person who sent this to you? Have
you verified any of the statements in the mail. Does such
a bill exist? Have you screened the attachment for viruses?
Maybe I am being paranoid but that is only becuase
they really are out to get us....
Also there are a lot of clues in the text of the lettter that
make it look less than legit.
FYI:
I have been part of 'lobbying campaigns' in the past. Here are
some important tips:
Here in the US if you want to influence the Congress the best
way is to write a short succint _handwritten_ letter and send
it to your Congressman and your Senators. It should specify the
bill in question and make your position on it clear in as few words
as possible. You should only address one issue per letter.
Anything sent to someone else's Congressman or Senator will
either be forwarded to your own or discarded.
Email, and computer printed letters and petitions bearing only
individual signatures carry very little weight with elected
officials. They are too easily generated en masse or falsified
outright.
However it takes time for a person to handwrite a letter. A
handwritten letter will be weighted at least ten times as
heavily as any other communication. At least more heavily than
any other communication that comes in without a check attached
to it....
Bottom line though is that if you are concerned about an issue it
is far more effective to comunicate your concerns to your
representatives as an individual acting independently than it is
as just one more person in a group filling out a form.
--
Doug in Greenbelt, MD, USA

Hi,

Just thought I'd let you know that my dad had a swallow test done this morning that says he is having "silent aspiration"; this means that when liquids enter his lungs, he does not cough or choke on them. The plan is to start thickening up liquids and pureeing his food. Hopefully, that will help this problem. He is still wanting to sleep most of the time, and is still on IV's and antibiotics, etc., as he has been. No word on when they'll be going home yet, but I'll continue to keep everyone updated. Keep praying. Smiles and hugs, Diane

Is it unusual for a msa patient not to be on any meds? Bob was on put on
sinemet for 3 months for rigidity & balance..when that didn't help,
parkinsons was ruled out & the dr. stopped the med. After that he was on
mirapex for a month, but showed no improvement, so he was told to
discontinue it. Now he isn't on any med at all. He uses the walker &
wheelchair at all times because of balance. It seems strange to me that
he is on nothing for these symptoms. What are your thoughts? He was dx
with msa. Thanks.. regards, jerrie

Pam;
My mother, Mable, has symptoms from several of these conditions. We were
told she has SDS. She has the tremors of Parkinsons. The OH of SDS. The low
volume voice of SDS. She has a blank or no expression like those with SDS.
But when she smile or laughs at a joke, her expression stays like that for a
long time. She has recently been having more trouble blinking due to the
automatic symptom not getting the info. Artificial tears are now being
administered. She has ataxia, and has to focus and concentrate on walking
and nothing else when she walks in the pool. She has muscle rigidity to the
point she needs help feeding herself and needs exercising several times a
day. Deep massage also helps for a while. She also has a lot of thick phlegm
she has to spit up every couple of days, not sure where that comes from, it
may not even be related to the SDS. Mothers symptoms include all of the
MSA's. If the doctors are not up on the diagnosis, what info can I give them
and the rest of the family?
Ps.. is there a warning list of PPA meds. Is in the archives of posts??
Thanks
Mary Ann-

To List,
Am passing this along FYI.
BVPond in VA.

Rose,
How wonderful about the twins, we have twin sons they are 41 now, we
sure enjoyed them.
Ann from Soddy,TN

Something more about clothing. My mother Joyce wore turtle necks often
because of her severe head flex (she thought it hid her humped back better).
Often, when eating (which she did a lot), food would miss whatever
napkin/bib was in place and her shirt would get soiled. She would have
someone help her get her arms out, swing it around, and wear it backwards
for an instant clean shirt. Debbie
-

Jane,
Did he work for the government? I thought everyone except government workers
were covered by SS. Even I only need two more quarters for SS and I worked for
the government or military for 39 years. You may find that he did pay into
Medicare anyway as I did and is elgible for Medicare in any case.
When I worked for George Washington Univ, I was covered under SS.
Take care, Bill and Charlotte

Hi all,
This is a classic of a person who has no idea of the laws of physics. But the
laws of physics still apply to him. You have to check it out. Just remember -
he saved the $50 delivery fee!
http://www.geocities.com/copper6500/homedepot.html
Take care Bill Werre

Catching up on mail, I've come to Carol's message about disability, income,
etc. One thing I'd add: be sure to check out ALL angles. My husband was
not covered by Social Security, just by the employer's retirement system.
So SS disability was not an issue. We did find that at his age and years
of employment, he was better off taking normal retirement than the
disability retirement offered by his plan. He was not old enough to be in
Medicare, so he was insured by a plan we bought through the retirement
system. (We chose a Preferred Provider plan rather than an HMO and it
worked pretty well).
Jane

Barb, My husband also was outfitted mostly in Lands End clothing in his
last years. Of course, he already was before that, plus LL Bean!
Specifically, he wore the cotton blend elastic-waist sport pants. We found
we had to order a size larger than we might have thought, so the elastic
waist wouldn't be too snug. In the summer he wore cotton mesh shirts (he
was able to get them on over his head). In the winter he wore some
turtlenecks and sweaters but especially liked LL Bean flannel shirts
despite the fact they had to be buttoned. He wore thick-ish socks (Norm
Thompson) and Minnetonka moccasins with the rubber-nubbed soles. (Oh, yes,
I know he wore knee-high support stockings for quite some time--under the
other socks, maybe) To go out, he wore athletic shoes (sneakers).
Occasionally he wore dressier pants and shoes, etc., but that became rarer
as time passed, because the other clothes were more comfortable. He used a
walker from mid-1996 to late 1998 and then used a wheelchair until he died
in mid-1999. Actually he used a wheelchair at home much of the time before
he started to use it to go out.
For pajamas he liked cotton flannel and in the summer cotton long pj pants
with a t-shirt. We got the pj's from The Vermont Country Store. Among the
ones they offer are some with elastic-waist bottoms with no strings to tie.
The summer-weight ones could be bought as pants only, no tops. They don't
always show them in the catalog but I expect they always have them. In
fact, he wore those summer ones as "pants" for months at home recovering
from back surgery.
Jane

Well Guys I tried the Benadyrl last night I slept 5 hours! That's
almost a record for me. I'll keep trying it, and keep you updated!

Hey guys:
I haven't been around al that long, and this is the first I've heard of a
PPA warning list. Where is this list?
Boy am I a shocked dufus. Rose is having twins? How can that be? I thought
all of us were old folks. Sorry for the assumption that we are all old and
decrepit. Well now, lets see, Momma was 48 when she had the last child.
Really Rose, If your happy, then I'm happy for ya!!!
Mary Ann-

My husband, Jerry, died at age 58 and I'd say his symptoms began about ten
years before that, in his late 40's, although we didn't recognize it at the
time (the same story so many others have told). Who knows, maybe things
were happening even before then but so isolated or slight that I can't be
sure now. It's true many MSA patients are older but, going by this list,
it's not unusual to be in one's 40's, some even younger.
Jane

Hi Laurie,

I'm not Bill but I can answer your question.

MSA or Multiple System Atrophy is the newer term for the disorder. Consider it an umbrella term that encompasses three groups of symptoms:

1. MSA-C (cerebellar) also known as Non-hereditary Olivopontocerebellar atrophy (OPCA)

2. MSA-A (autonomic) also known as Shy-Drager Syndrome (SDS)

3. MSA-P (parkinsonism) also known as Striatonigral Degeneration (SND)

With MSA-C or OPCA the main symptoms are loss of balance and a drunken-like gait known as "ataxia".

With MSA-A or SDS the main symptoms are orthostatic hypotension (low blood pressure when standing) and incontinence.

With MSA-P or SND the main symptoms are slowness of movement and tremors.. similar to Parkinson's disease.

Researchers came to a consensus in 1996 that the three disorders OPCA, SDS and SND which they previously believed to be separate disorders actually all have the same underlying disease process happening in the brain. This they discovered when comparing autopsy findings. They came up with the new name Multiple System Atrophy but it has been slow to catch on with the doctors who do the actual diagnosing so that's why people still get diagnosed with OPCA, SDS or SND and not as often diagnosed with MSA.

To further complicate things there is a group of hereditary disorders known by several names... Spinocerebellar ataxia is the newer term but older terms include Marie's ataxia and Hereditary Olivopontocerebellar atrophy. Often if a person has the ataxia symptoms doctors are unsure initially if they have the hereditary form or MSA-C or a whole host of other disorders that have ataxia as the main symptom. Doctors are often hesitant to give a diagnosis of MSA-C just based on the ataxia symptom. They will often wait several years to see if the patient develops any of the autonomic or parkinson's symptoms as well... this makes it more clear that it's actually MSA.

I hope this helps. Feel free to ask more questions to clarify. In case I've left some doubt, you should note that MSA is NOT a hereditary disorder but if ataxia is the most prominent symptom genetic testing is advised to rule out the hereditary OPCAs.

Regards,

Pam

Oops.. sorry i forgot to add this.. LOL. I was on florinef but could not
tolerate it.. I also have tried midodrine but i could not tolerate it
either.. I am on no meds at this time.. I do take 4000mg of salt in a day, a
loads of gatorade.
Patricia

Bill,
What is the difference between MSA and SDS? Is there a significant
difference between the two? Thanks.
Laurie

Hi Gert,

They diagnosed Dave by his symptons. Dr Kennelly told us the only test, to make absolutely sure was to insert needles into his rectum and check some type of nerve response. We decided that he had been through enough and declined the test. He has symptoms of all three types. He was diagnosed correctly because when we read info about MSA, it is like reading a paper someone wrote about him.

I know how hard it was to tell our kids about his illness but you are going to need their support. Our family has tried to make every holiday special. I can image how afraid he has to be at times, he is almost totaly dependent on me for everything. I just keep re-enforcing my love for him and let him know that I will be with him through it all. I also try to make him feel safe and secure in what his future holds, as far as keeping him at home with me instead of a nursing home.

I think once the shock wears off your friends and family, you will be surprised how supportive they will be. You and your husband are going to need them. Don't mind asking them to sit with him for you to run errands or for any other reason.

My thoughts and prayers will be with you. If you need to talk, feel free to email me privately anytime. I have cried on some of our members shoulders several times. Thank God they never seemed to mind.

Take Care, Kathy Thompson

Well, Mom and Dad had their hospice interview/evaluation today. He is
officially on hospice. I have heard so many good things about it. I
hope that their experience is a good one too.
They are replacing all of the medical "things" at the house. Mom and
Dad don't have to pay any more monthly rentals. (hospital bed, lift,
nebulizer, etc). Hospice also pays for Dad's food, continuous feeding
tube stuff (about $140/month). They will pay for some meds, but they
have a really good plan for meds right now - $20 for a 3 month supply
of anything. They send home health out 3 times a week and a nurse
twice a week. They were getting home health twice a week and a nurse
once every two weeks on medicare.
I have a really good feeling about it. I hope that my mom gets the
relief that she deserves and needs.
Jennifer Worth in Plano, Texas

Patricia,

That certainly sounds like orthostactic hypotension to me. But remember I am not a doctor. Are you taking Florinef or Midodrine? Talk to both your cardiologist and neurologist about it. Did you ever get a diagnoses, I can't remember.

Take care, Bill and Charlotte

God bless you both for your strength and wisdom.

Forward from the Progressive Supranuclear Palsy Listserve.
I thought this was very inspirational so thought I'd forward it on to
MSA/SDS list members.

Forward from the Progressive Supranuclear Palsy Listserve.

Bill,
When I stand after eating I get very ill, my heart goes to fast and my
blodd pressure falls more. Is that what you are talling about to gert.
Patricia

Gert,

Family and immediate friends should know anyway. At this point you can tell them that the doctors suspect a Parkinson's Plus brain disorder of some type, which means that some of his brain cells are dying. That covers most bases. You can also tell them that he will have progressively increasing movement problems and that he should not stand or walk for long periods or immediately after eating. The more you bring them into it, the better response you will get from them. There is always a fear of the unknown.

If they ask what they can do to help, tell them!

You will need people to come and sit with him at times to give you a break to go to the store, etc.

They should not shun him, it is not catching, and he needs contact with people more than ever. Contact with people helps stop depression.

They can write their Congressmen and ask for more research funding for Parkinson's Plus brain disorders. This area of government medical research has been severely neglected since 1981.

Take care, Bill and Charlotte

Gert,

Actually there are things that can be done for the symptoms you mention. Ataxia can be helped by range of motion exercises (physical and speech therapy). OH is helped by Florinef and/or Midodrine. If they drive the BP up too much, you can often lower the reclining BP by raising the head of the bed (usually with blocks) 4-6 inches.

While yo may not be able to completely do away with these symptoms, you can make them less troublesome to your lifestyle. Studies have shown that the exercise can add as much as 2 years to your quality of life expectancy. Even if your husband developes balance problems, if you get him to use a wheelchair, before he breaks something major like a hip or head, it still affords mobility and lessens chances of hurting himself.

Check this out with your doctor. Most movement disorder clinics have special range of motion exercise classes and caregiver support meetings going on at the same time. Some even offer babysitting. If not there are videos available which your clinic will know about.

While there is no cure for the disorder, there is help for symptoms in many cases.

Take care, Bill and Charlotte

kathy and Dave, What sort of test did they do at Mayo to give you a final
DZ. They want to inject some sort of dye into my husbands brain. It seems
if you have opca type as oposed to parkinsons type that it may be harder to
dz. I`m afraid to tell our friends family and kids for fear how they will
react to such a dreadful unpredictable illness. So far we say doc don`t
know. Gert

Celeste,
To my knowledge it is okay. It is primarily an antihistamine but has a side
effect on many people of making them sleepy. It was always the first
recommendation of the kids doctors. It does not seem to be the one that is
specifically a no-no for MSA. :o) I just checked as we keep some on hand for
the grandkids :o)
Take care, Bill and Charlotte

jeanie
My husband is 56 and still working our youngest is still in high school so
I`d like to stay in our 2 story home till he graduates in 2003. My husband
gets along pretty well so far, except for the Ataxia, and OH. Most people
don`t notice. I don`t think we should tell people since he would like to
continue to work for as long as possible. I`m not sure of the benifit of
knowing the definite dz since nothing can be done other than to treat the
symptoms anyway. I think we have the right Neuro now, he`s in a movement
disorder clinic at the Pennsy. Hosp in Phila. He see mostly Parkinsons
patients. Take care Gert

Hey guys, Dawn took me to a new neurologist today who specializes in
sleep disorders. He wants me to go off the Restoril because it isn't
working and use 50mg of Bendadryl. I tried to see if Benadryl was on
the PPA warning list, couldn't find it though. Just checking with
ya'all it is ok isn't it?
Celeste O'Neill

Rose,
Congrats to you.. My husband has twins sisters, and I think of them as my
sisters also... I am so happy for you.
Patricia

yes please:) My son told me years ago that he use to count to 3 after I
would stop talking (no comments please:). After awhile the 3 second
counting became ingrained in his brain. What patience ! Also, I noticed
when he tells me to get into the wheelchair when I am in the ER he
speaks concretely like Rose suggested. He will say 'chair in'. If I am
irritated at his simplistic format I will take the energy and tell him i
hate the wheelchair. That tells him I am feeling better and he starts
talking after we get home.
When I am off I definitely can not move anywhere near normal. However,
when i am 'on' sometimes people can not keep up with my walking. Then
the times in between 'on and 'off' is like a teeter totter keeping
balance. So many factors go into this deficit of motor activity. I
understand what the person is saying to me, I can hear them extremely
well, I just can not move as fast as I use too.
I also had a speech therapist make me a SIMPLE communication board and
if I can't talk I communicate with my eyes. Just something to think
about.
Thanks to the patient people who care for all the neuro impaired
especially the family and friends.
nancy m.

Jane and Dave

There are lifts that can help you with transfers and other movement problems. Medicare should help you with about 80% of the cost and if you have a supplemental it may pick up the rest or at least part of the rest.

Have they tried physical therapy to help him? Physical and speech therapy are a great benefit to many MSA patients. They probably help most early in the disorder as they show you what you can do to help keep movement as long as possible. There are exercises you can do to help you keep movement, that you can do while laying in bed or in a wheelchair. These are called range of movement exercises and are not the bouncy-bouncy aerobic exercises you always see on TV.

Take care, Bill and Charlotte

Rosalee,
This ia a "normal" symptom of MSA (or Shy-Drager). Control is to use Florinef
or Proamine for the low BP and to raise the head of the bed as much as 4-8
inches (10-20 cm) to lower the reclining BP. Experiment with how much it takes
to lower his reclining BP Doing this will usually allow you to put him back on
the Parkinson's meds and at least help the PD symptoms.
On the infecction - most MSA patients do not drink enough, because drinking
liquids is more difficult for them than eating a soft diet. Speech therapy may
help along with thickeners for the liquids. There is also a possibility that
physio therapy can help with movement at least somewhat.
Ask your doctors about trying these suggestions. They help many of us.
Take care, Bill and Charlotte
=================================

Note: forwarded message attached.

Hello Everyone!
The time has come upon us to have our first Central
Indiana Multiple Systems Antrophy/Shy-Dragger Syndrome
Support Group Meeting!
The Central Area MSA/SDS Support Group meeting
will
be held at 1 PM. (for approximatly 90 minuutes)
January 13, 2001 at
The Unitarian Universalist Church of Indianapolis.
They were very gracious in providing me the facility
January 13th., despite the fact that I am not a
member.
The church facility is located at
615 West 43rd Street
Indianapolis, IN 46208
I shall provide refreshments however, feel free to
bring a "covered-dish" if you so desire!
Directions:
Coming from the North:
Travel south on Meridan Street to 46th Street. Make a
right turn onto 46th Street. Take 46th Street
(West)until 46th Street Dead-Ends and Sunset Avenue.
You will see the campus of Butler University. Go South
on Sunset Avenue to 43rd Street. Make a right turn
onto 43rd Street. Travel a half block (west)and you
shall see the church sign and parking lot!
Coming from the South:
Travel North on Meridian Street to 38th Street. Make a
left turn onto 38th Street. Travel west about (two)
2.0 miles to Clarendon Road. Make a right turn onto
Clarendon Road. Travel North on Clarendon Road to 43rd
Street. Make a right turn onto 43rd Street. Travel a
half block (east)and you shall see the church sign and
parking lot!
Coming from the West:
Travel east on 38th Street (you may pass the
Indianapolis Art Museum)If this is the case, Clarendon
Road will be the next stop light pass Michigan Road!
Travel east on 38th Street until you see Clarendon
Road. Make a left turn onto Clarendon Road. Travel
North on Clarendon Road to 43rd Street. Make a right
turn onto 43rd Street. Travel a half block (east)and
you shall see the church sign and parking lot!
Coming From the East:
Travel West on 38th Street pass Meridian Street.
Travel west about 2.0 miles to Clarendon Road. Make a
right turn onto Clarendon Road. Travel North on
Clarendon Road to 43rd Street. Make a right turn onto
43rd Street. Travel a half block (east)and you shall
see the church sign and parking lot!
The meeting will be held in the "Common's" Meeting
Building. There will be signs directing you to this
area.
Please contact me at my email garyjoyc@...
or
Please leave a voice-mail message at
(317)327-4970,
Saturday January 13, 2001 I will have my cell-phone on
just in case anyone becomes lost or needs assistance.
My cell-phone telephone number is (317) 501-4899
This is an informal meeting to discuss the
direction of our new support group. I look forward to
meeting everyone!
I appreciate everyone's support.
Sincerely,
Gary B. Huddleston

Hello all,
I have an exciting announcement to make:
My husband and I are expecting TWIN girls!!!! I'm due April 11.
Everything's been going great, but I'm now on bedrest just as a precaution.
Since it's twins, the bedrest is to hopefully keep me from delivering too
early--as is more likely with twins. We just had our third ultrasound
yesterday. The girls (possibly identical) are about 2 lbs. each and all
measurements are within normal limits for what's expected at this time.
These are our first babies so it was pretty unbelievable to be told it's
twins. Twins do not run in the family and we weren't doing any fertility
drugs, so it was truly a surprise.
At this point, I'm still able to keep up with the list since I've borrowed a
laptop, but once they're born, I doubt I'll have time for much of anything
except taking care of them for awhile. If you don't see me write for
awhile and have a direct question for me, please feel free to write me
directly.
My husband started a website about the twins, but I don't want to post it to
the whole list. I guess it's a protective mothering instinct. Anyway, if
some of you want to see it, write me directly and I'll forward the address
to you.
Hopefully, I'll still be around for 2-3 months, but I wanted to share our
happy news.
Rose

To Debby,
Your description is about like my husband has become. A very strong
man and now almost helpless ,.unable to walk without supervision otherwise
danger of falls. He had a large garden as a hobby and was unaware that he
should have worn gloves when he used copper dust on his tomatoes.I wonder
if this was the cause.
ISomeone said Parkinsons is a cruel disease and I am more convinced every
day this is true.
Jane & Dave

Dear Bill and Charlotte,
Thanks for the helpful info on the sds site much appreciated .
Am putting off using the wheel chair for Dave because if his legs get too
weak and he falls I wont be able to take care of him at home.if I cant get
him up. He is 200 lb.
Are any of the people in the egroup from Pennsylvania?
thanks again
Jane & Dave

Mary
You also might try to sing what you want. Use something simple but put
the words to a simple lyric. The right side of the brain may process it
more easily. I know it might sound silly but forcing the right side to
process the things that the left side will no longer do is often helpful
for stroke victims.
It may make it more fun also. Music can help build bridges, it may
surprise you. Hope it helps.
Much Love
Sally

Dear, Dear Anne: Our thoughts, love and prayers are with you. You are a
wonderful, strong person. God bless you and all your family. You are in our
prayers tonight and always. Love, Bob and Pat from Framingham,
Massachusetts

Dear Gert,
My friends still don't know what is wrong with my husband. He is in the
beginning of this heartless disease. I am still asking why him. We will
have a final diagnosis in Feb. from Dr. Gilman in Michigan. I know how you
feel and please e-mail me if you would like. We can compare notes. My
husband is still working. I am thinking we may have to sell our home for a
one story. So many things to think about, but I want to be prepared for the
future. This site has been a great help to me.
Sincerely,
Jeanie

Hi Gert,

My name is Kathy, my husband has MSA. IF we hadn't went to Mayo clinic in Jax, Fla. I don't think we would have ever found out what was wrong with Dave. I know how frustrating it is to not know what is wrong.

Our problem is that when people ask what is wrong with Dave and we tell them MSA, they still don't know what is wrong with him. This group will help you not just with advice but to have someone know what your going through is worth a lot. We all are living with it every day, some of us as care givers, others with MSA.

Take care Kathy and Dave T.

If you have more messages for Anne please send them to her directly at
apledger@...
Hugs,
Pam

Anne,
May God Bless you and your family. Our thoughts and prayers are with
you.
Peace
Laurie

Hi Gert,

If it's MSA it's likely the OPCA (cerebellar) type. The drunken-like walk is called "Ataxia". This was what my mother-in-law had.

Hugs.
Pam

vera Thanks for the reply. My name is Gert. Our friends don`t know what`s
wrong with my husband They thought he was drunk. We haven`t gotten a
definite MSA dz yet. So far they say it`s a celebellum disorder(atrophy)
possible MSA but not the parkinsons type.

The two hallmarks of an email hoax are a statement near the top
of the email like this:
THIS IS NOT A HOAX!!!!!
along with lots of other attention getting capitalizations and
exclamations and an instruction, usually near the bottom but sometimes
near both the top and the bottom that says:
'FORWARD THIS EMAIL TO EVERYONE YOU KNOW.'
Sort of like spam. By now I'm sure we all have observed that any
email we receive that starts with 'This is not spam.' is spam.
Similarly any email that starts with 'This is not a hoax' is a hoax.
Hoaxters, and spammers, are liars--don't trust them. If you know the
person who sent you the hoax you can do as Bill does, reply to them
and let them know that the email is a hoax. But if you don't know
the sender be careful--especially if the message is offensive.
Someone may be sending out inflamitory email to test a list of email
adresses and harvesting the replies as verified addresses which they
will sell as 'verified opt-in email addresses.'

Rose, Thanks for the suggestions, yes I do know how frustrating itis for him
as he says quite often, "dammit I can't do anything any more." Thanks
again, I'll keep trying.
Mary

The same people also have a 'bigger' trackball only they don't say how
big it is or how old the child is whose hands are in the picture with
it. So I called them and they say the ball is about three inches in
diameter. It also looks like the buttons will be easier to use than
with other trackballs.
Here's the URL:
http://www.bigkeys.com/html_otherprod/kidsball.html
Looks promising.
Doug

--- In shydrager@egroups.com, Raymond Werre <bwerre@s...
There is a gate that stops the occupant from rolling off the open end
of the lift when it is up. That gate swings down like the tailgate
on a pickup truck, except lower, when the lift nears ground level.
The gate serves as a ramp--problem is it's too steep. I asked my dad
if he wanted me to adjust the limit switch on the lift so it would
stop closer to the floor--that way the ramp would not be as steep.
But he said no. It's his house so we do things his way. I think he
kinda likes his way--more excitement.
Too unstable. He needs a chair that is rock solid. I'm not really
sure but I think that even without the sense of balance he is still
very sensitive to motion. At times he finds his scooter to be
intolerably wobbly. Although the seat can loosen up (it is well
designed so it won't fall apart even if the locking bolt falls out)
it is not so loose that it would cause diffculty for someone else.
Sounds like the dolly would be too unstable as well, but the notion
of modifying a regular chair--perhaps a captain's chair, sounds
promising. I may get one of those plastic carpet protectors used
under office chairs and then put teflon pads on the bottom of a
regular chair's legs. The combination of Teflon on PVC has a static
coefficient of friction that is almost equal to the dynamic
coefficient of friction so there is no jerking or 'breakaway' effect
when sliding. It is a technique used in amateur telescopes (Dobsonian
mounting), that combines a clutch and bearing into a simple structure.

Diane, I hope your father is OK. I will keep him in my thoughts. Please keep us posted. Debbie

Vera,
What a heartwarming and inspiring story you related about FRed. Good for
him....and you, too!!!
Barb in VA

but for those of us with snow and freezing temps ... worth a reminder ;-]

cheers

sheila

*****************************
Did you know this?

Every sailing ship had to have cannon for protection.
Cannon of the times required round iron cannonballs.

The master wanted to store the cannonballs such that they could be of instant use when needed, yet not roll around the gun deck.

The solution was to stack them up in a square-based pyramid next to the cannon. The top level of the stack had one ball, the next level down had four, the next had nine, the next had sixteen, and so on. Four levels would provide a stack of
30 cannonballs.

The only real problem was how to keep the bottom level from sliding out from under the weight of the higher levels.

To do this, they devised a small brass plate ("brass monkey") with one rounded indentation for each cannonball in the bottom layer. Brass was used because the cannonballs wouldn't rust to the "brass monkey," but would rust to an iron one. When temperature falls, brass contracts in size faster than iron.

As it got cold on the gun decks, the indentations in the brass monkey would get smaller than the iron cannonballs they were holding. If the temperature got cold enough, the bottom layer would pop out of the indentations spilling the entire pyramid over the deck. Thus it was, quite literally, "cold enough to freeze the balls off a brass monkey."

still laughing ...needed that ...

cheers

sheila

When giving directions, try ONE step at a time and omit the unimportant
words ("back", "up", "down", "step", etc.). Also, sometimes it works best
to not say anything but just to gesture what you want the person to do. You
may have to repeat the direction, but give Warren LOTS of time to see if can
process what you're saying with some delay first. I know it can be
frustrating; just try to keep reminding yourself how frustrating it must be
for him too. You could also try showing him a picture of what you want or
drawing a simple picture of it.
Just some thoughts,
Rose

wonderful ... thx
cheers
sheila

Vera -
Bless his heart - I can imagine how hard that must have been for him to pick up
each piece! These are my sentiments exactly - there is no room for criticism
when one does the best that he/she can do - no matter how their "best" measures
up to someone else's "best"! It reminds me of Bob (husband) - he's having
difficulty speaking (yes, we're doing therapy), but he always says "thank you"
for everything I do for him - from helping him up, to fastening a shoe, etc.
This means so much that he makes such an effort and is such a gentleman in the
face of this terrible condition.
Elaine
Sorry I'm not sure of your name, but wanted to tell you how sad it
is that someone has to make fun of other's the way your friend did of
your husband when he stumbled. I know he didn't say anything to them,
but I'm sure it had to hurt his feeling. I know when the boy across
the street made fun of Fred because of his tremor, it hurt Freds
feeling and he still thinks about it.I came across a poem once a few
years back and maybe it's one that you should put out when you have
your friend over again. It makes you think.
A little seed lay in the ground
and soon began to sprout.
Now, which of all the flowers around,
Shall I, it mused come out?
I don't care to be a rose. It has thorns
I have no desire to be a lily.
It's too colorless. And I certainly
Wouldn"t want to be a violet. It's too
small and it grows too close to the
ground.
And so it criticized each flower,
That supercilious seed,
Until it woke one summer hour
And found itself a weed!
When you see faults in someone else,
Before you criticize, beware:
For you have flaws and failures too
That other people have to bear.
Fred and I went to a party for a friend a few years back, Fred was in
line to get some food ( at the time he could do things more) but he
knocked over the cup that the sliverware was in and they went on the
floor. He picked everyone of them up, but it took all that he had to
do it. I was one of the last ones in line to get my food, I heard a
couple talking about the man who knocked the sliverware over and they
started laughing. When I looked I saw it was Fred that they were
talking about. I didn't say anything to them, but I wish to this day
I had. They don't know how proud I was of Fred that day. It was one
of the hardest things he had to do that day to pick up the
sliverware, but he finished the job. To this day he doesn't know that
he was laughed at, and why should he, he did the best he could and
that's nothing to laugh at.
Hugs
Vera
To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com

how wonderful of you to take such an interest and be so helpful to your
neighbors. as far as difficulty eating, talking, and taking pills, seeing a
speech therapist may help. tell your neighbors to talk to their doctor
about it and get a written order for a speech evaluation and treatment.
Usually, taking pills in applesauce (one at a time) is easier than taking
them with liquid. Puree food and thickening liquids can also help if the
swallowing problem is pretty bad. It's best to see a speech therapist
one-on-one to determine what we be best for your neighbor.
Rose

Sweet dear Anne, We love you and so glad we were blessed in having you touch
our lives! We will keep you in our thoughts and prayers. Love, Pat

[INLINE]

Redneck Computer Terms

[INLINE]

"Keyboard" ----- Place to hang your truck keys.
"Window" ----- Place in the truck to hang your guns.
"Floppy" ----- When you run out of Polygrip.
"Modem" ----- How you got rid of your dandelions.
"ROM" ----- Delicious when you mix it with coca cola.
"Byte" ----- First word in a kiss-off phrase.
"Reboot" ----- What you do when the first pair gets covered with barnyard stuff.
"Network" ----- Activity meant to provide bait for your trot line.
"Mouse" ----- Fuzzy, soft thing you stuff in your beer bottle in order to get a free case.
"LAN" ----- To borrow as in, "Hey Delbert! LAN me yore truck."
"Cursor"----- What some guys do when they are mad at their wife and/or girlfriend.
"Bit" ----- A wager as in, "I bit you can't spit that watermelon seed across the porch longways."
"Digital Control" ----- What yore fingers do on the TV remote.
"Packet"----- What you do to a suitcase or Wal-Mart bag before a trip.

"Hard drive" ----- Trying to climb a steep, muddy hill with 3 flat tires and pulling a trailer load of fertilizer.

***************************

Loved it, coppied it, printed it.....

Hi All, its been hectic around here, getting on a new routine. Because of
ulcer surgeries ( 2 for perforations & 1 to remove part of his stomach) This
happened back in the late sixties, they were unable to put a PEG. Has to have
pureed or soft foods. Came home Saturday afternoon. Very weak, but eating
well, so hopefully he will regain some strength soon! Supposed to get a
hospital bed this week, and possibly some home health care. Thanks so much
for all of your concern and support! We love all of you!!! Pat

Dear Jane,
My husband Bill does the same thing. When it happens, he comes out
of it before I can get a cuff on him, but I would imagine it is due
to OH.
Marie Fox

John,

That is the way I finally convinced my husband to
'give in' and use a cane when we went out. The doctor
had been pushing it for a while, but he was very
resisitant. I finally pointed out that people would
give him a little more consideration and patience if
they saw the evidence that something was wrong
medically instead of making an assumption.
Gail
=====
Gail
gsouthwick@...

Jane,
That seems like some petite mal seizures (epilepsy)
which I have seen. My husband used to have grand mal
seizures (mostly) and when my aunt began zoning out I
didn't even think seizure, I thought petite mal would
just mean less violent shaking, but that is not
neccessarily so. This is something that should be
brought up at the doctor's.
Gail

=====
Gail
gsouthwick@...

John,
What are you doing up at 1:41 in the morning? Don't you know MSA patients are
supposed to sleep too :o) Good thing Charlotte wasn't there for that rude
person. She would have run over his toes with the wheelchair :o) (and maybe
said "I'm sorry, I can't control this thing very well").
Unfortunately, there is more and more evidence that chemical dependancies like
alcohol and smoking come from chemical inbalances in the brain also. In fact,
they are looking at all "mental il;lnesses" being a lack of chemicals in the
brain. Remember that smoking increases BP and helps people with SDS maintain
their BP.
Hope you got some sleep - Night Owl :o)
Take care, Bill and Charlotte in icy Virginia

Vera,
If they rented the van without titling it to the people, you can probably get
the rebate. We bought a demonstrator minivan and they still gave us the rebate
in 1992. but the van had never been titled (the dealer owned it). Try it. Our
minivan was only 4 months old and had 5000 miles on it.
Take care, Bill and Charlotte

Anne,
We are all behind your decision 100%. We expect to hear from you in a few days.
Hugs to you, Tony, Lorraine, Maria and their families at this trying time.
Love, Bill and Charlotte
P.S. and the pooch too :o)

Greetings Vera,
Yes. I've seen this. But perhaps because I grew up in an "in your face"
part of the country, I learned to speak out about this.
Several times people have commented about "getting started a bit early in
the day". I just point out that my problem results from a progressive
neurological condition, which will only get worse and has no cure. Normally
that suffices. Sometimes people ask for more information, wanting to know
(for example) if it is similar to MS. Once (fortunately) the response was a
"Yeah, right!". At that point I just curtly responded "So, tell me, what
medical condition causes your extreme rudeness?".
Impolite? Sure! But there is no reason for us take that type of nonsense.
I always try to politely let others know they are judging the book by the
cover. Hopefully it will help the next person with a hidden disability.
But if politeness fails, I just won't put up with that type of nonsense.
Also, it's often wise to use a hiking staff / cane. Not to support weight.
Or even really to help with balance and coordination. It just helps people
understand there is some disability here .. not alcohol.
Just some thoughts ... offered for your reading pleasure from the ... Ataxia
Zone!
Regards,
=jbf=
John B. Fisher

Vera,
Your story about Fred and the silverware really touched me. Thank you.
Jane Baldwin

Hi Eve,

My husband was diagnosed with MSA , Feburary last year. We feel as isolated as you do. There is no one here, in Jesup, that we know of that has MSA. This group has been a blessing to me.

Take care, and remember you are not fighting this alone.

Kathy and Dave

thank you for the gentle reminder we can forward ...
sheila

Judy:
It's nice of you to tell me about the rebate on the lift from the
dealer. Believe it or not the saleman tolded me about it.A really
nice kid, but I can't get it because the Van I got was a new used
Van. They had rented out before and it had 20,000 miles on it, so
that lets me out of the rebate. The saleman tolded me to try it
anyway, all they could say is no. ( didn't I tell you he was nice)
They are a few company out there that have the rebate, I came across
them, not sure if it was on Charmayne's web or somewhere else, but
there are 5 different companys that do the rebate. It would of been
nice for the rebate, but I got a good deal.
Thanks again
Vera

Sorry I'm not sure of your name, but wanted to tell you how sad it
is that someone has to make fun of other's the way your friend did of
your husband when he stumbled. I know he didn't say anything to them,
but I'm sure it had to hurt his feeling. I know when the boy across
the street made fun of Fred because of his tremor, it hurt Freds
feeling and he still thinks about it.I came across a poem once a few
years back and maybe it's one that you should put out when you have
your friend over again. It makes you think.
A little seed lay in the ground
and soon began to sprout.
Now, which of all the flowers around,
Shall I, it mused come out?
I don't care to be a rose. It has thorns
I have no desire to be a lily.
It's too colorless. And I certainly
Wouldn"t want to be a violet. It's too
small and it grows too close to the
ground.
And so it criticized each flower,
That supercilious seed,
Until it woke one summer hour
And found itself a weed!
When you see faults in someone else,
Before you criticize, beware:
For you have flaws and failures too
That other people have to bear.
Fred and I went to a party for a friend a few years back, Fred was in
line to get some food ( at the time he could do things more) but he
knocked over the cup that the sliverware was in and they went on the
floor. He picked everyone of them up, but it took all that he had to
do it. I was one of the last ones in line to get my food, I heard a
couple talking about the man who knocked the sliverware over and they
started laughing. When I looked I saw it was Fred that they were
talking about. I didn't say anything to them, but I wish to this day
I had. They don't know how proud I was of Fred that day. It was one
of the hardest things he had to do that day to pick up the
sliverware, but he finished the job. To this day he doesn't know that
he was laughed at, and why should he, he did the best he could and
that's nothing to laugh at.
Hugs
Vera

Sounds like a petite mal (a small seizure). Had a friend that would do
that. Happened frequently enough it kept him from driving. But otherwise,
no real problem.
Regards,
=jbf=
John B. Fisher

Hi All,
Jane Baldwin here again...
My friend, Bruce used to sometimes "zone out" while sitting in his chair.
Nothing noticeable would bring it on. I would just look over, and his eyes
would be fixed, staring ahead, and he would just be gone. "Hello? Hello?"
Nobody home!
After a minute or so his eyes would focus again, and he would come out of
it, no worse for the wear. "Oh, hello!"
What is this called? Is it OH, or a form of it?
Thanks a bunch,
Jane