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My husband Ralph use to swell up like that when he had too much salt. Too many chips, too much dip. too much bullion.

The home care nurse told me that if he is swelled like that from the outside he was also swollen inside and was in danger of a heart attack. Keeping him in his chair or somewhere with his feet up was the only solution except for the diuretic which was in his blood pressure medication. I had to make him stay in the hospital bed with the feet elevated several times a day. That was not easy because he wanted to be in the den where all of the activity was.

The no salt routine was very difficult because when I would get my eyes off him he was eating anything and everything that had salt in it. He craved the salt on some days.

He also had a great change in his shoe size. He fell because his feet and ankles would not bend due to the swelling.

His skin was also easily damaged when he was swollen. Cuts and scrapes were more difficult to heal. I was given saline solution to heal the places on his legs that would look like ulcers and get so sore.

Keeping him still was a big problem.

You just have to hang in there and do what is best for your patient.

Hugs to ya from Arlington where it is 54' at ten P.M.
[INLINE] Loafing tonight after a busy day.

Melanie, I'd be very interested to hear about in anything that can help your
father's head flex. I hope your dad can be helped because I know how
disabling that symptom is.
Good luck, Debbie

Debbie,
I do think my father is at a "last resort" place with
this illness. He is going downhill fast. If I were
him, I would try almost anything to slow the
progression...proven or not. The possible liver damage
bothers me, but I don't know how often that happens. I
need to research the drug more.
Of course, the biggest issue would be finding someone
to prescribe it. My father lives a long way from NY.
Also, re: the cervical dystonia. I emailed a Dr. at a
PD/Movement Disorder clinic in Houston and got a call
from his nurse today. She wants my dad's Dr. to call
this Dr. to get more info. on treatment and possibly
set up an appt. She seemed somewhat hopeful that they
might be able to help him. I'm hopeful but not overly
optimistic. I'll let you know what I find out. If he
does go, I think I'll fly down, too. I need to ask
some questions.
Melanie in OK

Bill,
My sentiments exactly on the idea with the forms!!!!
Take Care, tell Charlotte we said "hey"
Judy Whittaker

Judy,
Thanks, I was worried about SS too. I'm going to call someone next
week(provided I get everything done this week!!!!)
Thanks again, take care,
Judy

My mother Joyce's symptoms were imbalance, rigidity (extreme), slowness,
sever head flex, slight tremor, internal tremors, bladder incontinence. The
Artane helped immediately with the balance, but the benefit was short lived.
In fact, the Artane caused most if not all of my mom's hallucinations and
confusion. Her recent MDS took her off it slowly and she didn't feel any
worse physically and was less confused and no more hallucinations. Her
doctors explained to me that they don't like to give to Artane to older
patients because it tends to cause such mental symptoms.
My mother never noticed any difference with the Rilutek. She was on it a few
months. Because of the cost, she decided to go off it. Debbie

thank you debbie for replying
I just started reading about temperature today and we have already
noticed that he runs around 97 for most of the day and will start
monitering it on a more daily basis. thank you for the info. I am
sorry to hear about your loss. My heart is with you and all who have
gone through this or are going through this now. It is very hard to
tell people what it is like who aren't directly involved with msa.
This site has given me so much help already and I thank you all for
your help and input. Bless you all. My Dad has just had a bout with
pnuemonia but with a good outcome. He is home and doing well now.
My dad can still get around on his own but tires easily and can only
go out for short periods of time so we make the most of these trips.
Some days he just doesn't have the strength to do much. We are
taking Dads illness one day at a time and enjoying the time we have
with him now. We try to keep him laughing and in a positive mode to
keep depression away and just show him how much we love him which
seems to help him handle whats happening to him. When he is weak we
try to stay close to him and keep him from falling which he has done
a few times when we weren't there. It is very hard to watch him
failing as you all know. One day at a time is the way we handle it.
thank you

hi all. i just wanted to comment that my husband john had a swallowing test
done at Kesslar Institute's <in NJ
is a rather remarkable procedure whereby they place a tube down the throat
that has a tiny camera on it. they then fed john various foods/liquids and
actually watched is throat muscles in action. what brought us there in the
first place was what i thought were violent coughing and choking episodes at
ANY meal, but also some that seemed unprovoked. what they found at Kesslar
was that john could tolerate normal food and thickened liquids. the thinner
the liquid, the more difficulty he had. at that time they suggested we not
use any water or juice <unless it was pulpy or we added a thickner
'unprovoked' events were caused by his own saliva. evidently the little flap
at the back of his throat did not close soon enough for his throat to slowly
accept the liquid. Kesslar did NOT suggest, altho my sister, an occupational
therapist did suggest that a speech therapist would most likely benefit.
BUT, sadly, because this was coming from a family member <even tho one with a
degree
ultimately suffered the consequences as his choking never really improved.
we did find success with soda....carbonated beverages. for some reason those
bubbles seemed to help that flap close somewhat quicker and even tho he still
did choke, it was far FAR less violent than had the liquid been water. in
fact, john could not tolerate ANY water. not even a sip. as we all know,
water is vital to one's health. so i'm sure that many of john's infections
had much to do with his lack of liquid intake. he had milk shakes daily. he
loved these and handled them quite well. some people tolerate the "Thick It"
quite well but john didn't. he was a creature of habit and hated change. i
went thru various phases of caregiving in this department. i went thru the
"you will ONLY eat good, nourishing, nutrient enriched foods" and finally,
during his last year, i probably drove thru the mcdonald's a minimum of twice
weekly to get his favorite, 2 cheeseburgers, fries and a vanilla shake! i
always had "instant gratification" foods around too. cookies, cupcakes,
chips, anything he would eat i would buy just so that i knew he was eating.
a p.s. here; i have not been near a drive-thru since he was mercifully
released, the sight of a milk shake makes my eyes sting with sorrow and you
can stop me cold in my tracks whenever i hear someone coughing. it's a
disease that certainly takes its toll in many ways.
regards, all
kaye

John, your reference to "Toddler Disease" reminded me of one of our favorite
grandchild stories. When Ken was experiencing a lot of difficulty walking
and took very cautious steps, one day our 3 year old granddaughter was
watching him as he tried to make his way to the bathroom.
She jumped down from her chair and took his hand, and said
"That's okay Opa (her name for grampa) you will be able to walk better
when you get a little bigger. I used to walk that way when I was a little
girl, but now I can walk good." Caused laughter through tears. Aren't the
little ones precious? And bring such joy even when times are difficult.
Bernice./ cg. to Ken dec. 06-23-99
In snowy Ohio

hi debbie: i am curious about your mom's symptoms & did the rlutek &
artane help? thanks for your reply! regards, jerrie

Hi. I have met Dr. Fazzini informally at PD walks and the like. He is well
respected in the NY area. Some people that my mom met in her PD support
group had years of trouble coming up with the right drug combos. Finally,
they switched to Fazzini and he was able to come up with the right mix for
that person very quickly.
When my mom was seeing him, the thing she didn't like was that he spent only
15 minutes with her (that's how much he allows for each patient). The thing
is, he has terrific instincts. When my mother first started seeing him it
was because her previous MDS wasn't making much headway with her. She was
slipping fast. That doctor said she might have an PD+ disorder. After seeing
Fazzini only a couple of times, she walked into the door and he noticed
immediately how far she had progressed since the last visit. He said right
then that she did not have PD, but what he believed was striatonigral
degeneration and changed her drugs (added Artane and Rilutek). Later, when
my mother saw another MDS in NYC (great doctor -- Dr. Cote), he confirmed
that it was PD+ because both the pyramidal and extrapyramidal tracts were
involved (though he couldn't say which PD+ disease it was for sure).
Anyway, I do believe Fazzini's instincts are extraordinary. His bedside
manner isn't. On the plus side, he always answered my e-mails. On the
downside, we couldn't get him to answer a weekend or after-hours phone call
ever. Also, when my mom's head flex got so bad and he ordered an MRI, he
NEVER got back to her with the results -- that was why my mom left him.
He also recommended something else in an e-mail correspondence (which I
didn't keep) -- I think it was some growth hormone? I would recognize it if
I saw it written down but I cannot come up with it now.
I think when he said he'd try it (Rilutek), he meant he would take it if he
had MSA because it might help -- I don't think he meant as a last resort.
And if he did, do you think your dad IS at a last resort place (my mom was)?
Hope this helps, Debbie

hi charmayne: loved the animation...it certainly expresses my feelings
about this horrible disease..but it did make me smile! thanks. regards,
jerrie

Am really not sure how this will go but if the poem isn't attached it is
from Bob Deenzer, and Bill Werre made the bomb for all of us 2-20. This
machine has some pretty colored borders in it but ahdono whar. Nor have I
time to find and use them. Hand embroidered a Serenity Prayer, tho, my
kitchen helper. LA Louise where the steam bath just turned into a fast
freeze processer.

Debbie,
After we talked about Rilutek/Riluzole several days
ago, I emailed the Dr. you said your mom received the
meds from. Just thought you might be interested in his
response to me.
"Rilutek may slow the progression of MSA BUT it is not
proven. The medication is expensive and may cause
liver damage. However - if I had MSA, I would want to
try it."
Not sure how to take that. I wonder if he means he
would try it as a last resort or if he suspects it
does some good although it's not proven (yet?).
Do you know anything about this Dr...his credentials,
etc.? I haven't checked him out. Did you meet him?
Melanie in OK

Greetings again, W!
You noted:
Errk! That's just me strangling! Careful on ice! Yes, I walk okay. But
I've EXTRA careful on ice due to poor balance. I try to avoid it
completely.
And a note on the practice. Frequency is more important than duration. I
try to get up and move around hourly. When I don't I *know* it.
It took me many months to regain some semblance of my previous ability to
walk. So he needs to be patient. Also, he may have reached a point where
he will continue to have serious problems.
For example after continued practice, I now walk with a definite 'waddle'.
But it is defintely better than before. My wife often comments about the
difference between how I walk when I first start in the morning and later in
the day. It's a striking difference.
Nor does this stop the progression. My ability to walk continues to
deteriorate. But if I can maintain my strength by doing this, it will
definitely help.
Hope that helps.
Regards,
=jbf=
John B. Fisher

Hi All,
I don't respond alot, but I enjoy the information that I am learning and help
to be involved in a small way in the lives of many others that are going
through the same ordeal. My father has shydrager and just recently of
2.20.01 had a swallowing test because he complains of the sore throat alot.
The dr. told my mom the time span was better going down, but there was an
area also that had decreased in response time. My dad at this time doesn't
have sleep apnea, but he can barely walk with assistance. My mother has the
caregiver's blues and she needs outside help. However, they have medicare
and thats all. He has become so dependent on her, whenever I come on the
weekends he only want my mother to help him with his bath and meals.
Anything that involves helping him. It is becoming very hard on her. He
refuses to take the florinef and med. for reflux. By the way it is cold and
snowing in parts of NC today. Thanks for the group and being there for so
many people. Sorry, so long. Be blessed all that reads this.
Dee in NC

Greetings Louise!
You wondered if I could
LOL! I wish I could. But I just do windows ... not the art work on them!
;-)
Oh, a suggestion on the resetting of the poem. You can usually use the
paste buffer to move text from a read message into a word processor (for
example Microsoft Word). Once there you can easily play around with the
border and such. I've attached a sample word document file of "The Cross"
that came by the other day.
Hope that helps.
Regards,
=jbf=
John B. Fisher

Hi there,
I'm not sure what Toprol is, that's not a drug I've ever heard mentioned here
before for low blood pressure. The two common medications that people take
for that are Florinef and Midodrine(Proamantadine). You might ask his
doctors about whether either or both of those might be tried if his blood
pressure is not under control right now.
Sleep apnea is a common symptom. Which type of breathing device does your
Dad use, a CPAP or a Bi-Pap? I've heard some people mention that in certain
cases the Bi-Pap works better. Has he been evaluated recently at a sleep
clinic?
Do you think his problems on his off days are due to his lack of sleep or his
blood pressure? Perhaps getting either or both of these under better control
might help. These are just a couple of ideas to start with. Others will
join in. Welcome to the forum and stay tuned, you will get lots of answers
here.
Hugs,
Pam

Greetings Jennifer!
You noted and wondered:
Jennifer, clearly your has (and continues) to express his desires. You have
the advantage of making an informed decision now. You know the options, but
desire to follow his wishes. You ARE doing the right thing.
You might wonder if you should do more, since you know of another option.
But it would be much worse to discover the option later and wonder. No, it
is better to know about an option, and decide now that your father does not
want assistive devices.
Do not worry. The right thing is to love your father enough to allow him
this. Love brings freedom of choice and decision (in this of all things).
We can guide. We can inform. But true love allows freedom. It is never
easy. But it is always the right thing to do.
So do not worry. Go and enjoy your time with your father. And accept the
blessing of time with him.
You and your family will be in my prayers.
Regards,
=jbf=
John B. Fisher

Hi everyone
As the subject says, we are new at this. My Dad after many years
of the doctors not knowing what was wrong with him have finally
said that my Dad has Parkinson/shydrager. He has been having
problems for about four years now. It started out as having problems
with his bladder and then went downhill from there. Then the muscular
problems started and Parkinson symptoms sent us to a neurologist.
the first one suspected a stroke, the second one Parkinson and MSA.
He has had the blood pressure problems for about 4 years now and
getting progressively worst the past 6 months or so. He takes
Sinamet for the Parkinson symptoms and Toprol for the blood pressure.
He is having a hard time sleeping nights. Is taking a sleeping
med to help but only gets about 4 hours straight sleep, them a
continuous on and off sleep for the rest of the night. He has sleep
apnea and is on a breathing machine. Any one have
this problem too? Also My brother and I are his primary care givers
at home. We have gotten him a hospital bed to keep him elivated so
his blood pressure doesn't skyrocket when he is sleeping but we are
in the dark about how to better care for him. We don't get much help
from his doctors. They just shake there heads and don't know what to
say to us. He has about 5 doctors taking care of his many medical
problems. He also has an abdominal anurism, diabetis, and a heart
problem. He also had recent surgery for a urostomy and now has a
stoma to pass his urine into a bag. His bladder failed about 2
years ago. We can't seem to find much online about shydrager that
anwers our questions. No one can tell us what the progression of the
desease is like and what we have ahead of us. We know there is no
cure and what the outcome of it is. Can anyone help us to deal with
this. It is very difficult watching a once very strong man turn
into an almost invalid within a short space of time. He has good
days and can get around ok then the bad days, he is in bed mostly
all day. It seems to be a day on and a day off. Anyone else
experience this? Any help will be appreciated. Thank you for
listening and any help you could give us.

Hi jerry my dad has recently been diagnosed with shy-drager and
has been very emotional for about a year now. He crys so easily
because of sadness or happiness. any extreme emotion seems to set
him off and he sobs uncontrollably for a few minutes, then he is ok
again. This is a very baffling desease and we are beginners here.
any advice for us? We really could use some info on treatments and
what we have waiting for us in the future. He has been having
problems for about 3 years that we know of and was just diagnosed as
having both Parkinsons and Shy-drager plus a various amount of other
medical problems like an abdominal anurism and diabetis.
thanks for any help you could give me.
san

You only know three spices: salt, pepper and ketchup.
Texas. "Pass the Hot Sauce"

The mosquitoes have landing lights.
Texas. They also have their own escorts of dragon flies.

You have more miles on your snow blower than your car.
Texas A pickup with a big, double, muffler does wonders when you back into the driveway.

You have 10 favorite recipes for moose meat.
Texas Even road kill gets monotonous. Have you ever seen an armadillo after a struggle with an 18 wheeler?

Canadian Tire on any Saturday is busier than the toy
stores at Christmas.
Texas WalMart is your favorite spot for bargains

You live in a house that has no front step, yet the door
is one meter above the ground.
Texas A hitching post is a dead give away that a Cowboy lives there

Driving is better in the winter because the potholes are
filled in with snow.
Texas Can't remember ever driving over a pothole. Fell into a few. My wheel base is too small.

Just a bit of a comparison from Texas, that Other Country.

Barb

[INLINE] [INLINE] Chasing the Big Jack Rabbits today.

Jim,

:o) I've been living with Charlotte for almost 43 years, so I guess I'll keep her :o) Her mood swings aren't any worse now than they were 40 years ago :o) except now they are daily and then they were monthly :o)

Watch me get bombed for this one.

Do you find that you are more down mentally as well as physically later in the day? The worst time of day for both of us is the last brief change at night. Charlotte can not help as much, I am tired (and grumpy), and we have so many last minute things to do.

I agree with you that BOTH caregivers and patients need to be patient with each other. However, we are all human. Hugs do work well. In Jim Todd's words:

Hugs to ya!

Bill and Charlotte

Jim,
Well said! All of the patients with MSA have a right to be angry!
This disease has taken so much from such wonderful people. We
caregivers see one side of it, but WE can take a break (sometimes)
but you patients cannot.
Thanks for the reminder.
Carol & Rob

had a dream where I was livid with all the people in the dream, even
my family. When I awoke, I was really startled at the way I had felt
in the dream, because that was not the kind of person I am.
least felt the reason for my anger, I say felt because one can only
feel, sense, or dream about this thing which caused such an anger in
me.
misplaced, I was angry at the disease, not anyone particular. I am
more careful now at being angry at what is really the real cause and
not my family or friends.
lucky as I am to realize I hate this unfair, horrible sickness called
MSA.

To All.

I see today, several messages about mood swings and MSA patients being angry.

I had an experience which awakened me to a hard fact, I am angry. I had a dream where I was livid with all the people in the dream, even my family. When I awoke, I was really startled at the way I had felt in the dream, because that was not the kind of person I am.

Less than two minutes after awakening, I saw the reason, or at least felt the reason for my anger, I say felt because one can only feel, sense, or dream about this thing which caused such an anger in me.

It is called Multiple System Atrophy! Yes, I realized the anger was misplaced, I was angry at the disease, not anyone particular. I am more careful now at being angry at what is really the real cause and not my family or friends.

I also found that once the anger was identified, I felt a little better.

Please give the patients a little leeway, and I hope they are as lucky as I am to realize I hate this unfair, horrible sickness called MSA.

God Bless All,

Jim Stark

Seems probably every lab goes by a slightly different standard but I
found these online for whatever they are worth.
Hugs,
Pam
http://pathcuric1.swmed.edu/PathDemo/nrrt.htm
Iron Studies
Total Serum Iron (TSI)
76-198 µg/dL (Male)
26-170 µg/dL (Female)
Total Iron-Binding Capacity (TIBC)
262-474 µg/dL
Transferrin
204-360 mg/dL
Ferritin
18-250 ng/mL (Male)
12-160 ng/mL (Female)

Someone reminded me the other day that our list isn't only for
Caregiver's so I just went to search for a Patient's Bill of Right's to
balance with the Caregiver's Bill of Rights that Kristine kindly posted
for us.
---
The Patient's Bill of Rights
It is not easy for someone who has been independent to become a patient
and to suddenly have to depend on others to help
with such basics of everyday life as eating, dressing, housing and
emotional and physical activity needs.
With illness or injury there are other needs, such as making sure
medications are taken as prescribed and treatment is received
as needed; as well as assistance with private bodily functions, such as
going to the bathroom or bathing.
For some people, becoming a patient is especially difficult because of
the tendency of caregivers to treat them like children and
because they can quickly lose their personal dignity and feel they are a
burden to loved ones. Therefore, it may be helpful for a
person to know what rights he or she has as a patient in order to feel
good about the care being received and also what care is
appropriate to request.
In 1973, the American Hospital Association developed a Patient's Bill of
Rights to encourage more consistent and effective
patient care and satisfaction. While this bill of rights was developed
with the hospital setting in mind, some of its points are
useful in caring for a patient at home.
The Patient's Bill of Rights deals with such issues as:
the type of medical care a patient has the right to expect,
the type of information available to a patient about his or her own
medical condition, treatments, hospital charges, and
the personnel
responsible for his or her care,
the rights a patient has regarding accepting or refusing medical
treatment,
a patient's rights in regards to privacy and confidentiality,
and how the hospital expects a patient to behave.
Whether you or your loved one is in a hospital or is being cared for at
home, you may want to know these rights as they may
be reassuring and may relieve some unspoken fears or concerns.
---
See the complete Patient's Bill of Rights here:
http://www.aha.org/resource/pbillofrights.asp
Hugs,
Pam

Hello again.,
Water retention: In our recent visit to the ER, Chuck had IV's to bolster
his BP, since he was dehydrated. However, the neurologist said that if
the fluid doesn't stay in the vessels, it will go in the interstitial
spaces causing puffing. Perhaps there is a breakdown of normal passage of
fluid across the vessel walls. Thus the salt is important.
One funny thing: When Chuck asked the dietitian in the hospital for more
than 12 grains of salt to put on his low-salt food, she looked at him
like he was a criminal.
Second funny thing: the nurses told Chuck he had very low blood pressure
upon standing (as if he didn't know that) and refused to let him out of
bed, until the neuro finally told them to walk him. They kept muttering
about the BP numbers, like 45,36, etc.
Ferritin: Dr. Rouault's study is just what we have been looking for,
since Chuck's serum ferritin levels have been 2x normal---665 ng/ml for
at least 8 years. Luckily, our former internist included that test in his
yearly blood lab panel. But he never knew what the high ferritin meant.
Of course, we still don't.
Anyway, I sent an email to Dr. Rouault. No answer. Then when Pam posted
her address and said that the physician should write, we asked the neuro
to write a letter to Rouault, which she blessedly did, after poohpoohing
my request to have a ferritin test done last fall. Grrrr and so there!
So we shall see what transpires next.
Bless you all,
Barbara in Illinois across from Iowa

Hi all,
Well, the day before yesterday it went up to 65 degrees here. Yesterday it was
up to almost 60 deg. This morning it was 24 deg and clear at 6:15 when my
grandson left for school. We got 2 or 3 flakes of snow around 9:0 and they
decided to close the schools two hours early. Fifteen minutes ago we still had
only a few flakes, and now we have a blizzard. Roads are covered, and grandson
is not due home from school until 12:45. Now 11:30 and 7 year old is not due
home until after 2 PM.
Hopefully we will only get the 2-4 inches they predicted.
Take care, Bill and Charlotte
Hope your

Hello! I posted this to the cbgd support group in response to a request made during one of our chats. I thought I would forward this on to you, knowing that in all likelihood that you've seen this material before. For those who haven't seen this before, I hope you find it helpful. - Kristine

A Caregiver's Bill of Rights www.caregiver.com/rights.html

I have the right:

To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.

To seek help from others even though my loved ones may object. I recognize the limits of my own endurance and strength.

To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.

To get angry, be depressed, and express other difficult feelings occasionally.

To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.

To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.

To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.

To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer needs my full-time help.

To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.

Modified by Today's Caregiver Magazine

Caregiver Self Advocacy Messages to Live By www.nfcacares.org

1. CHOOSE TO TAKE CHARGE OF YOUR LIFE. We fall into caregiving often because of an unexpected event, but somewhere along the line you need to step back and consciously say "I choose to take on this caregiving role." It goes a long way toward eliminating the feeling of being a victim.

2. LOVE, HONOR AND VALUE YOURSELF. Self care isn't a luxury. It is your right as a human being. Step back and recognize just how extraordinary you are, and remember your own good health is the very best present you can give your loved one.

3. SEEK, ACCEPT AND AT TIME DEMAND HELP. Caregiving, especially at its most intense levels, is definitely more than a one person job. Asking for help is a sign of your strength and an acknowledgement of your abilities and your limitations.

4. STAND UP AND BE COUNTED. Recognize that caregiving comes on top of being a parent, a child, a spouse. Honor your caregiving role and speak up for your well-deserved recognition and rights. Become your own advocate, both within your own immediate caregiving sphere and beyond.

Tips for Family Caregivers www.nfcacare.org

1. Caregiving is a job and respite is your earned right. REWARD YOURSLEF with respite breaks often.

2. WATCH OUT for signs of depression, and don't delay in getting professional help when you need it.

3. When people offer to help, ACCEPT THE OFFER and suggest specific things that they can do.

4. EDUCATE YOURSELF about your loved one's condition and how to communicate effectively with doctors.

5. There's a difference between caring and doing. BE OPEN TO TECHNOLOGIES AND IDEAS that promote your loved one's independence.

6. TRUST YOUR INSTINCTS. Most of the time they'll lead you in the right direction.

7. Grieve for your losses, and then allow yourself to DREAM NEW DREAMS.

8. STAND UP FOR YOUR RIGHTS as a caregiver and a citizen.

9. SEEK SUPPORT from other caregivers. There is great strength in knowing you are not alone.

10. Caregivers often do a lot of lifting, pushing and pulling. BE GOOD TO YOUR BACK.

Hi all,
We STRESS here on the the list that sudden changes for the worse with MSA are
almost always infection. My wife went to the ER in 1998 - they said she was
dehydrated and pumped her full of liquids. My daughter was with her at the time
(I was in the same hospital getting my heart checked out). My daughter told
them that her urine was dark and smelled funny, but they told her my wife did
not have a temperature and sent her home. Within a week I had to take her back
to the ER (I insisted on going to a better hospital) and they found that her UTI
had developed into a septis infection by this time.
I wrote a letter to the first hospital and the next time we went there, they
knew all about MSA. They also listen to me now about laying her flat on the
gurney, taking her pills while she is there, etc. If they give you any stuff
about the disorder, ask them what NIH has to say about MSA and orthostatic
hypotension, ataxia and dysphagia. Then ask them how many MSA patients they
have cared for. If they tell you a number, remind them that you get the advice
of over 400 patients and caregivers of MSA. Then sweetly ask them to check for
infection. If they still refuse ask them to put it in writing that you asked
for them to check for infection and they refused. They will check for infection
(or you will have grounds for a lawsuit).
I do believe that ER's are becoming aware of MSA and it's problems because of
the patients and their caregivers belonging to groups like this. Where do you
live that it takes 45 minutes for a 911 call for an ambulance???? Even if I
make a call for a non-emergency to help me get my wife out to the car, it has
never taken more than 20 minutes. On emergency calls it takes less than 7
minutes.

hi everyone: my husband bob sometimes laughs at inappropriate times.
when he was being dx'd., the dr. asked him about feeling more emotional
(laughing or crying). obviously this is an other symptom of msa.
regards,jerrie

Hello all, with a continuation of careGIVER (not Taker?) woes.
Chuck had his first (no, it was the second) ER visit, and it humbled me
and several doctors in the Dubuque, Iowa area. Chuck had been feeling
kind of weak and uninterested in anything but sitting in his chair or
taking naps for several days. Monday morning he woke up with a terrible
headache in the back of his head and with aching muscles. He took Alleve,
which helped briefly, but by 7 PM or so, he tried to get up to go to the
bathroom (once again) and fell into the piano. Then he commenced to
shiver and shake all over. I was lucky to contact the neurologist soon
(she was on call) and she said to get him to the ER to check for
stroke.This was rather difficult because he could barely walk, and I
didn't want to wait for an ambulance (45 minutes to our house).
To make a loooong story short, he had no CAT signs of bleeding in the
brain, and no cells in his spinal fluid (thinking meningitis). However,
he had a fever and high white cell count. No signs of cold or flu.
Admitted to hospital, internist took over, more tests, ultrasound of gall
bladder, for heavens sake. Low potassium, indicating he was dehydrated
(well, he refused water in the ER for 7 hours because he was afraid he'd
have to pee and he couldn't even sit up). Yesterday he came home with Drs
mystified and with me very humble and mystified, as well.
He's feeling much better, but still weak and tired.
Barbara in Illinois
We had planned to go to Florida for some warm weather starting this
Sunday. We have both been a bit anxious about it. Whether we will go or
not is still up in the air, and I really feel for people who would like
to get away and can't do it as they used to. Pam, I have your description
of Mersey River on my desk and look at it longingly. We had planned to go
to Nova Scotia last summer but cancelled at the last minute.
.
Humble because, I thought I knew it all about incurable diseases that
have haunted me in members of my family all my life, but this disease is
very different. It is very sneaky. It never occurred to me that he had a
fever. I know, from your comments, that MSA pts don't run high fevers,
but its something more than that. It probably wouldn't have made any
difference if I had stuck a thermometer in his mouth---we still don't
know where an infection was/is.
It does make you humble.
Barbara in still snow-covered northern Illinois/Iowa.

Wanted to comment on the mood swings. My husband started bursting out
crying or laughing at almost any provocation. We were concerned at the
crying, thinking he was becoming depressed. The neurologists (more than
one) have explained to me this is simply "emotional incontinence" caused by
damage to a certain area of the brain. They said many stroke victims have
it as well as those suffering varying neurological diseases. Sometimes my
husband would laugh inappropriately, like when he meant to cry, or at least
when something was sad, and he would do it uncontrollably and it was obvious
his emotional thermostat was way out of whack. Once I realized all of this
I was able to explain it to others, who previously were made uncomfortable
by his crying or laughing. He told me it made him feel better also, to have
me explain it, because there was nothing he could do to control it. If he
saw someone he hadn't seen in a while, he always cried, and they would say
something like " oh I am sorry, I didn't mean to make him feel bad". Then I
would explain that you didn't make him feel bad at all, that is simply part
of this dastardly disease which causes him to lose control of his emotions.
They do that for no rhyme or reason, or at the slightest provocation.
Hope this helps someone. I know my husband felt much better once I
understood it.
Bernice cg to Ken dec. 06/23/00
In snowy Ohio (again)

Mary Ann,
The clipboard is temporary memory and lost unless you saved it. You can save it
as a wordpad file by clicking START, Programs, Accessories, Wordpad, File and
Save
Or you can paste it into your word processor and save it there.
Take care, Bill and Charlotte
===================================

Nancy,
Call Connie Morella's office (you live in her district - I think). I'm sure
they have a person who can help you out. P.S. She is a co-sponsor of the House
Resolution to allow the stem cell research at NIH.
Take care, Bill and Charlotte
=======================================

Hey Rose,

You never told us you were a "speech-language pathologist" :o) How are the twins doing? Are they fighting or dancing? :o)

Hugs from Bill and Charlotte

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

Great article from my new Quest magazine from Muscular Dystrophy Assoc.
MDA paid for all of Ralph's tests and care at Southwestern in Dallas
Barb
http://www.mdausa.org/publications/Quest/q81speech.cfm

Jean and Chrissie,
You can still talk to your Senators and Congressman. They may be able to pull
strings that you can't. I know that Medicare has a rule that you can not be
held
accountable for bills which were authorized by a doctor and you had reasonabe
assumption would be paid. Maybe you can squeeze by on that.
If not, you can reapply in Florida, or Maine when you get back. Don't give up!
Senator Snowe is known to sponsor legislation of this type of thing. They are
writing rules like this was horse and buggy days, with airline and trains -
travel is possible even for handicapped. It is STUPID for a Downs patient not
to
be able to get support.
Take care, Bill and Charlotte
=============================

Thursday, Feb. 22, 2001
80 American Nobel Laureates Back Stem Cell
Research
WASHINGTON (Reuters) - Stepping into a heated
political
and ethical debate, 80 U.S. Nobel laureates have
signed a
letter to President George W. Bush urging him to
not block the
first flow of federal grants for research on
human embryo cells,
The Washington Post reported Thursday.
The letter, to be faxed to the White House on
Thursday
morning, marks the latest effort to influence the
Bush
administration as it decides whether to fund
experiments on
embryonic stem cells, the Post said.
The letter comes three weeks before a National
Institutes of
Health deadline by which scientists must apply
for the
agency's planned first round of stem cell
research grants, the
report noted.
Researchers say stem cells, taken from frozen
embryos that
fertility clinics were planning to discard, can
one day cure a
range of diseases from diabetes to paralysis.
Opponents call the research immoral.
But, according to the Post, the Nobel laureates
say in their
letter to Bush that given the cells' great
therapeutic promise, it
would be immoral not to study them.
The letter was signed by such notables as James
Watson,
who won a Nobel in 1962 for co-discovering, with
Francis
Crick, the structure of DNA; molecular biologist
Hamilton O.
Smith, who was a key player in the recent
landmark genome
mapping effort by Celera Genomics of Rockville.
Md., and
Edward Lewis, the California Institute of
Technology biologist
who conducted seminal work on embryo development,
according to the Post.
The letter was composed and circulated by Michael
West and
Robert Lanza, two scientists at Advanced Cell
Technology
Inc., a biotechnology company in Worcester,
Mass., the Post
said.
Opponents of the research, including Douglas
Johnson,
legislative director for the National Right to
Life Committee
criticized the letter, the Post said.
"Just as war is too important to be left only to
generals, the
killing of human beings in medical research is an
issue too
important to be left only to scientists, even
Nobel laureates,"
Johnson is quoted as saying.
Health and Human Services Secretary Tommy
Thompson has
said he is reviewing the Clinton administration's
decision to
fund stem cell research, the Post said.

Dear All,

The discussion recently about mood swings and MSA have been quite interesting. Whenever I've had to go in for tests I have been asked if I am more emotional in response to events. Professor Mathias has also asked the same question as a part of the MSA profile. I have noticed a rather embarrassing increase in my reaction to sentimental TV and films.

Best wishes,

Jill Lucas

In a message dated 2/22/01 3:27:15 AM, ralsk@... writes:
<< http://www.familycareamerica.com/

Great article from my new Quest magazine from Muscular Dystrophy Assoc.
MDA paid for all of Ralph's tests and care at Southwestern in Dallas
Barb
http://www.mdausa.org/publications/Quest/q81speech.cfm

Another great site from the Quest Magazine Vol 8 No 1 2001
Barb
http://www.familycareamerica.com/

Hi;
To those who know their computers. My question is, if I copy something and
then end up shutting down my computer, is what I copied lost. I then start
up my computer again and it does not show up to paste it. Or is it saved
somewhere on a clipboard somewhere? If so how do I find it?
Thank you, Mary Ann

left work 96. d isability denied 97.
am t rying again. a dvantage to interview by phone or in person
at t he i er of fice? nancy spires

thanks Bob for sharing your thoughts with us. Great Poem!! Shows as we all
know the mind is working much better than the body.
Bernice

Hi Carol,
Yes, apparently the rule is that you must NEVER leave the state in which you
live and receive medicaid from. Every state adheres to their own rules as far
as I can make out.
There is a possibility of an appeal, but the fact remains that we have left
the state.
It stinks.
Jean & Chrissie

We would like to remind you of this upcoming event.
Minneapolis/St.Paul MSA/Shydrager Support Group
Date: Thursday, March 8, 2001
Time: All Day
This group meets the second
Thursday of each month with
a speaker usually every other month.
For more information call Ginny at 952-953-0505
email: vober123@...
or call
Pauline at 651-552-8624

Hi JFB,
Thank you for this, my husband was so encouraged by your tips when I
told him! We live in a fairly hilly, snowy/icy Cdn city, so walking
sticks with ice-pick tips could help. He is determined to practice
every day now ( and I will try to lay off nagging him to use the
walker every waking second!)
Thanks also, Judy (a few messages later) on your suggestions re:
scooters. I was pleasantly surprised to hear H consider the
possibility of renting a wheelchair for the trip, so that's a start.
Adapting to all these physical changes is exhausting stuff - he still
hopes to go clambouring along rocky riverbanks and mountain biking in
the Cdn Rockies as we once did.... Though no kids to call
us "ancient," a 2-hour shopping excursion is enough to wipe him out
for the day now. Sometimes he feels 40 going on 95....
But we just have to adapt, I guess. Thanks to all again.
W

John, Truly punny! More impact when you don't have to explain. Sorry,
all I came up with was Mendelian botany. No, not my gardening or your
context but cg zombie status. You puter tutored. Now that you've shown
your EXPERT status ( request, not command, when you find time) reset 2-20
poem for framing and/or run the flaming bomb thru SDS angels and turn it
into an explosion of hearts. That is your mission should you choose to
accept it. Daffydilly Admirer, LA Louise where the festival begins Saturday
in Gibsland and I can't go.

Hi Judy,
That is a wonderful idea, we have a tax attorney here on the island that
everyone says is great so I might just as well make an appointment to talk
with him. I have done our taxes the past two years on Turbo Tax to save
having to pay someone to do them so I'll pick someone's mind to help me know
what to do.
Do you have to take out Social Security for the employee?
Thanks again,
Judy

Jean,
That is TERRIBLE!
Have you tried calling and simply explaining the situation? Is there
a written set of rules you are supposed to abide by to continue
medicaid coverage? Can you ask for a hearing?
I am SO furious to hear that they are trying to do this to you! If
all else fails, hire a lawyer.
Carol & Rob

--- In shydrager@y..., coneill10@h... wrote:
Hey Everyone, Sure do miss you, this is Dawn Morley, Celeste O'Neill's
sisters. As you recall I had a mishap with my computer in early
January and my e-mail still doesn't work right. I have been reading
everybody's e-mails but haven't been adding much because sending an
e-mail is goofed up. So I am at Celeste's this afternoon (she lives 5
minutes away) and using her computer.
A couple days ago Celeste all of a sudden started swelling, really
everywhere. It is more obvious in her hands and feet but her face is
swollen too. So is her abdomen and legs. This has never happened
before. Does anybody have any idea what might be causing this and
what we might do about it. Don't panic I am not asking for medical
advice just anybody's experience. I think tomorrow if it is not
better we will send Celeste's neurologist an e-mail. I thought about
a diruretic but what sense does that make with someone with low blood
pressure.
A few days ago, her Neurologist had her add an extra Sinemet before
bed time to try to help her sleep. She dropped one Amantadine pill a
day and added a Benedryl at bedtime to help her sleep.
As usual you are terrific. In my heart I believe there will be a cure
for this awful thing. In the meantime, we will keep muttering along.
Muttering and swelling in Indiana,
Dawn Morley - Celeste O'Neill's sister

Thank you for your kind words, they are indeed a
bright hope for us. It is so nice to hear something
positive on this very sad, dreary disease. It has
been such a blessing to have you all to read about and
have such wonderful support. My mother appreciates
reading all of the print outs. Thank you all very
much.

Pam,
She wants the serum ferritin assay.
Bill.
Here is what she wrote me:
Dear Mr. Werre, Would you ask her dr. to perform a serum ferritin
assay and let me know the results? I would be very interested.
REgards,
Tracey Rouault
Tracey Rouault M.D.
Head, Section on Human Iron Metabolism
Cell Biology and Metabolism Branch
NICHD
Bldg. 18, Room 101
Bethesda, Md.
20892
301-496-6368 or
301-402-3428
301-402-0078 (fax)

I'm just looking this up on the internet and I noticed there are at
least 4 different measures of iron:
1. Serum Ferritin
2. Serum Iron
3. Total Iron Binding Capacity (TIBC)
4. Transferrin Saturation
I'm not sure which of these tests Dr. Rouault wants people to have.. or
perhaps she needs to know all of them. Could those in contact with her
find out and let us know?
Thanks,
Pam

Hi
My ferritin was 160 back in Feb./2000. My internist, thought that
was a little high and recommended that I connsider donating blood.
Also I have emailed Dr. Rouault on several occasions and had my
neurologist try to contact her but with no success. I would love to
take part in the study. Any ideas?
Steve Crawford

Along The Road
I walked a mile with Pleasure
She chattered all the way.
But left me none the wiser
For all she had to say
I walked a mile with Sorrow
And ne'er a word said she,
But oh, the things
I learned from her
When Sorrow
walked with me.
Robert Browning.

Kaye, thanks for the response. Yes, he lives with me.
My two daughters and I moved back in with my mother
and father, because he would fall quite often and mom
could not pick him up. He presently walks with a
4-point cane, but is very unstable on his feet. He
has a pubic cath. and takes quite a bit of medication
a day. He frequents the Marshfield clinic, as they
were the only ones who had knowledge of the disease at
the time. We are presently considering Vanderbuilt
University. My mom is hoping for a miraculous cure, I
however, realize that it is just a matter of time.
Lately, his short term memory is not so good either.
He has an excellent sense of humor though, it is just
the outbursts, that have us concerned lately. I do
appreciate all the responses that I have received,
this is definitely a wonderful group of people.

thx Vera ... hope your day is full of sunshine ;-]
sheila

Celeste already knows about this research report but I want to point it out
for everyone again. We don't know whether Celeste's high iron levels prove
anything or not but Dr. Rouault at the NIH will want to hear from more people
to obtain enough data to study this fully. Please reread this research at:
http://www.nih.gov/news/pr/jan2001/nichd-30.htm
I hope you will print it out and share with your doctor. Please contact Dr.
Rouault if you'd like to participate in her study:
"Currently, Dr. Rouault is seeking patients with Multiple System Atrophy to
take part in a genetic study to learn whether
they have a genetic defect involving IRP 2.(Iron Regulating Protein 2)
Similarly, she is also seeking patients with Parkinsonian symptoms for the
study, because Multiple System Atrophy often masquerades as Parkinson's. Dr.
Rouault and her colleagues are especially interested in seeing patients with
these diseases who have relatives with either disorder and have high blood
levels of ferritin. Those wishing to participate may have their physicians
contact Dr. Rouault at Rouault@... or
write her at the Cell Biology and Metabolism Branch, NICHD, Bldg. 18T, Room
101, Bethesda, MD 20892."
Let's hope they have hit onto something important.
Hugs,
Pam

In addition to John's great explanation, here's a handy web page to help you
learn to copy and paste:
http://www.webmasternow.com/copyandpaste.html
I've had people ask me a similar question and I'm not sure if this is Marilyn's
situation or not....
The question I've been asked is "how come when a web link appears in my email
that it does not appear as a blue link that I can click on". My answer was that
it's either something in your email settings you have to adjust or the email
software you use may not support html. If it's the latter you will never be able
to get the blue links directly, you will always have to cut and paste the links
from your email to your browser. If it's the former you have to go and adjust
your settings to accept html... how you do that depends on your email software.
so if anyone has this problem let us know what email software you use..
Netscape, Outlook, Eudora and AOL are probably the most common ones.
Hope this helps someone.
Hugs,
Pam

Charmayne:
It's good to hear from you once in awhile. Just to know your ok. I
for one miss seeing your name on here, but I understand how time is a
thing of the pass when other things have to be done.
Wanted to let you know that think of you and John often
Hugs back
Vera

Marilyn:
I know Charmayn took alot of time and hard work to do this web page
for us. She works as hard as the other's in the group for the infro
for us. Thank you to all who work so hard to help us out. You are a
God send.
Vera

Karla,
I was diagnosies with MSA with PD last March, I don't have outbursts
but I do cry very easily. I cry at commerical, anything that can
touch your spirit. I had a girlfriend just look at me and I burst
into tears with laughter..It happens, we don't me to make you guys
feels bad, we sometimes can't control our emotions.
Celeste

Shiela:
Boy did you give me alot to think about today. These are all
something to think about. I wonder Why?
Thank you I loved them
Vera

Hey guys I just got my iron level back, guess what it was high (168).
My internist made the statement on my report indicates using
supplements. But I'm not! Anyone had there checked?
Celeste

The last two days, my feet and hands have been swollen. How does one
with OI or OH rid excess water without crashing there blood pressure?
Celeste

Hello everyone:
Just wanted you to have this, It show's that there is always hope. God Bless
you .
Hugs Vera

Karla, Welcome, though sorry you are here.
Many on this list will tell you that any sudden changes warrant a closer
look at possible infection. One thing you may want to do immediately is get
a temp on him (do you know that the baseline temp of many people with MSA is
below normal?).
As for the outbursts, I know that many people with PD and PD+ disorders are
much more emotional than usual for them. I have often heard that they are
prone to cry more. My mother Joyce (71, died 11/00) was emotional before the
MSA but much, much more emotional afterward.
Good luck, Debbie

I have been reading all the e-mails, but have not
responded to any as of yet. This is my first
response. I guess it is more of a question. My
father was diagnosed with MSA a year ago November, and
has rapidly declined. My question is, lately he has
had terrible mood swings and outbursts over simple
little things, is this normal, does anyone else
experience this?
Karla - Milwaukee, WI
coachkja@...

I care for my sister 24/7 and she has Down Syndrome and SDS/MSA. She lives
with me and I can no longer work and must pay my own insurance etc.
She receives medicaid and ssi from the State of Maine and SS and believe me
it is not very much.
Our parents are both deceased and I am her legal guardian. Hope I haven't
lost you yet.
Here's my question...... because my sister is petrified of walking on snow
and ice (always has been) and because we are able to stay with a 91 aunt in
Florida, we have come here for a vacation for 6 weeks. I just found out that
medicaid is dropping her because we have left the state. How can this be??????
Even though my aunt is 91, she is the ONLY source of respite that I get.
My sister can swim in a pool every day here. At home she is absolutely house
bound in the winter. Believe me when I say that I am doing it for my sister,
I would much rather be at my own home, snow and all.
Of course my big concern is her medication and the cost. I could not possibly
afford to pay it even for a month.
I am sorry that this is so long and I am not looking for pity, I am just out
of solutions and was hoping someone might have some answers.
Again, thanks for being here, you all are my lifeline.
Jean & Chrissie

Hi Carol & Rob,
Nice to hear from you. Glad you are traveling. I have seen that cane/stool
as well and we are considering it.
I only recieved 2 responses to botox/drooling, yours and 1 other - I guess
not many people have tried it or maybe not many have the drooling problem.
Has anyone read Brainrecovery.com or checked out their website or seen the
video showing Parkinson's patients responses to Glutathione shots? I saw
the video & it looked interesting. The author is a neurologist of Naples,
Florida named David Perlmutter.
Tom and Joan in Seattle

my husband ,bob, has had msa for 2 yrs.the other night while trying to
sleep ,he came up with this verse.
In my whole life,,The very worst day,,Was when I was told,,"You have
MSA"..Of all the problems,,I could have missed,,This is without a
doubt,,Number 1 on my list..With MSA,,Life has no worth,,I'd be better
off,,Under the earth..The reason this disease,,Gives me a fit,,Is
because there is,,No cure for it..It's unbelieveable,,But it is
true,,How to make you better,,Most doctors have no clue..Maybe the MAN
upstairs,,Will step in,,And they'll come up,,With the perfect
medicine...Goog luck to all my fellow MSAers

We are very happy with VA Doctors and Hospital in Oklahoma City. It took a
while to get their attention about the MSA symptoms, we didn't know what was
wrong either. The PC Doctor didn't think it was anything serious, until Al
starting passing out and falling on a regular basis. Sent him to the
Neurology Clinic. Luckily a doctor there had been studying MSA, and was very
knowledgeable about the disorder. They have been very good to us since then.
If the DR thinks Al needs a med that VA doesn't have, he gets it approved by
the Chief of Staff, and they order it for him. Have also furnished him with a
wheel chair, hosp. bed & table, and the bed side commode, which he doesn't
have to use yet. Gave him a commode elevated seat & frame for regular toilet
seat, and shower chair. I really don't know what we would have done without
them!!!! Sometimes we are there several hours, but that happens about any
place you go. Just wanted to add my two cents on VA. I recommend it if you
are eligible. Even if you don't think that you are, go ahead and check it
out. You might be! Okay, its my bed time, so I'm leaving it with
you Night Owls! Hugs, Pat

YES, have been there and am still there.
Ann from Soddy,TN

Hi All,
I have a couple of questions concerning Remaron(sp?) and Ambien. Mark had
back to back Dr's appointments yesterday with his neuro and rehab specialist.
Does anyone take either Remaron or Ambien?
Since Mark's ordeal in ICU he hasn't been able to sleep much at all, he can't
go to sleep and when he does he can't stay asleep. Of course, since he can't
wear the Passy Muir valve on his trach at night he requires suctioning about
every hour until he falls asleep then he's fine. Therefore, I'm not getting
much sleep either.
The rehab girl suggested talking with his Pulmonary specialist because she
didn't want to prescribe anything that would suppress his breathing so I went
next door while waiting for the neuro to leave a message with the Pulmonary
Dr. He was just coming out with a patient and came right over and wrote a
prescription for Ambien.
Then the neruo asked about Mark's Zoloft and we told him we didn't think it
was doing enough for Mark. Our choice was to increase the Zoloft from 150 to
200 mg or try Remaron. The Dr. said that Remaron has some anti-parkinsons
benefits and will help with sleep. So, we are weaning Mark off the Zoloft
for the next 7 days then starting Remaron and using the Ambien until we get
him up and running on the Remaron.
Last night I gave him the Ambien and he slept like a baby all night. The
Ambien is only to last 6-7 hours with no side effects or drug like qualities
hanging on through the day. I was just wondering if anyone else has any
experience with these two drugs.
Thanks for your help, take care,
Judy

We were lucky to see the director of the VA clinic on our first visit and
he was familiar with SDS.
We were assigned to a regular DR. at the clinic. and then they sent up to
Nashville to see a Neurologist, it so happened that the Dr. was from
Vanderbilt and she was very familiar with SDS, she felt the regular
neurologist in Chattanooga was doing what they would do at Vanderbilt and
the VA hospital, so she wrote the internist Dr with VA that we see in
Chattanooga and said that we were to do what the neurologist in
Chattanooga suggested and that we did not need to make the trip to
Nashville all of the time.
Ann from Soddy,TN

The main difference between MSA and autonomic neuropathy is:
- MSA affects nerve structures INSIDE the brain.
- autonomic neuropathy affects nerve structures OUTSIDE the brain.
Hans.
http://medlineplus.adam.com/ency/article/000776.htm
Autonomic neuropathy
Definition:
A group of symptoms caused by damage to nerves supplying the internal body
structures.
Causes, incidence, and risk factors:
Autonomic neuropathy affects approximately 8 out of 100,000 people. It is a
form of peripheral neuropathy affecting the autonomic portion of the
peripheral nervous system.
The peripheral nervous system includes the nerves used for communication to
and from the brain and spinal cord (central nervous system) and all other
parts of the body, including the internal organs, muscles, skin, blood
vessels, and so on. Autonomic neuropathy includes damage to the nerves
supplying the autonomic portion of the peripheral nervous system, which is
the portion that supplies the internal organs, blood vessels, and other
areas not under voluntary (purposeful) control.
Damage to the autonomic nerves causes abnormal or decreased function of the
areas supplied by the affected nerve. For example, damage to the nerves of
the gastrointestinal tract causes decreased ability to move food during
digestion (decreased gastric motility), resulting in symptoms such as
nausea, vomiting, diarrhea or constipation, and abdominal bloating. Damage
to the nerves supplying blood vessels causes problems with regulation of
blood pressure and body temperature (dilation of skin capillaries is used to
dissipate heat from the body). Damage to other structures causes similar
dysfunction.
Autonomic neuropathy is a group of symptoms, not a specific disease entity.
The causes are multiple. Autonomic neuropathy is associated with alcoholic
neuropathy, diabetic neuropathy, disorders involving sclerosis of tissues,
surgical or traumatic injury to nerves (such as surgical vagotomy, used to
control stomach ulcers and similar disorders), other forms of neuropathy,
use of anticholinergic medications, and many other conditions.
Copyright 2000 adam.com, Inc.

Pam,

According to this site:

http://medlineplus.adam.com/ency/article/000776.htm

It (autonomic neuropathy) sounds a lot like MSA. Sorry folks, it says not to copy the site info.

Thake care, Bill and Charlotte

Hi Bill & Aida,
Thought I'd give you our take on Home Health Care in our experience with
Mark. Last year we had a home health nurse's aid coming every morning to
bath and dress Mark so I could be at work by 8:30 when I was working an 8
hour day. My insurance, Mark's primary covered 80% until we were dropped
when I advised the agency that we would be out of state for 2 weeks at
Christmas.
After Mark's 17 day stay in ICU this December I tried the same agency for
daily care and was told that neither my insurance or Mark's Medicare would
cover any of the care and I would have to pay for it myself. My family came
for two weeks at Christmas and I just couldn't do everything for Mark or even
leave him home alone to go anywhere with my family so I signed up for a nurse
to stay with him for 4 hours a day. It was $25.00 an hour and I refused to
keep paying that much. Because the island is mainly retirement we must have
about 10 different agencies that provide home care but I've always been told
that hiring someone on my own would be cheaper.
Luckily, someone at the bank where I work knew someone that has an agency and
gave her my name. She called me and said as a favor to the bank she would
give me someone's name and I could contact her myself. We now have Valencia,
Mark's caregiver for 5 hours a day at only $10.00 an hour. She is not a
nurse, has no formal training but had cared for a patient with a trach and
Peg tube like Mark's. I'd been told that we would probably go through
several people until we found the right one but Valencia is a perfect match
for our situation.
Mark loves her, she is very responsible, she loves the dogs and she and I
have become best friends. I have seen ad's in the classified section of the
local paper requesting home care people so I know that not everyone wants to
go through the agencies and have to pay the agency fee on top of the
employee's.
It's not the tax break I was hoping for because I pay her weekly in cash so I
can't report it as medical expenses on the taxes but I'm still ahead not
paying the extra money to the agency.
Hope this helps, take care,
Judy Whittaker

Cash's Health Condition 'Improving'
.c The Associated Press

NASHVILLE, Tenn. (AP) - Johnny Cash, hospitalized with pneumonia, has been
upgraded from serious to satisfactory condition.
Cash, 68, was admitted to Baptist Hospital Feb. 11 after flying in from his
winter home in Jamaica.
``He is improving,'' hospital spokeswoman Debby Koch said Monday.
The country singer has autonomic neuropathy, a disease of the nervous system
that makes him susceptible to pneumonia. He was treated for pneumonia during
a two-week hospital stay in 1999. In 1998, he was hospitalized twice for the
illness and said later he nearly died that fall.
Cash's hits include ``A Boy Named Sue,'' ``Folsom Prison Blues'' and ``I Walk
the Line.'' He has eight Grammys and this year was nominated for two more.

http://www.umich.edu/~neurosci/faculty/faculty.htm
http://www.med.umich.edu/neuro/staff/sgilman.htm
http://www.laskerfoundation.org/fundingfirst/comment/10/comm3d.html
Dr. Gilman will speak at the upcoming National Ataxia Foundation
conference on April 6 - 8, 2001
Regards,
Pam

Marilyn,

Did you get any kind of answer?

Take care, Bill and Charlotte

Did you get a response?
Melanie in OK
--- Charles and Marilyn Morris <morriscm@...

Some of you had requested info concerning Johnny Cash. The following is a copy of a letter that I wrote in the fall of 2000 in response to an article written and published in the Nashville Tennessean. The article purported to be from an interview of Mr. Cash and an attempt to publicize the release of his latest album.
There was an article, written by Mr. Peter Cooper, in the Nashville Tennessean (10-22-00 www.Tennessean.com) concerning Johnny Cash's new album and his health situations. I wrote the following letter to Mr. Copper as a response including my feelings about his article and the comments of Mr. Cash concerning the misdiagnosis.
Most of the article, which began with front coverage on page 1F, described Mr. Cash's work and his new album with some discussion of family. I am quoting the passages that disturbed me.
Page 2F Info taken from the Nashville Tennessean:
Are your doctors saying that your health problems are caused by Shy-Drager Syndrome?
Mr Cash: "That was a misdiagnosis. I do not have Shy-Drager Syndrome. My doctor told me in November that if I'd had it, I'd be dead by now. She said, "You're getting better so you don't have Shy-Drager's. and you don't have Parkinson's.
I am in better health than I have been in a year or two. I worked all day yesterday in my yard. I pruned my grape vines yesterday............"
Someone remarked to me yesterday that you seem virtually fealess person. Is that right?
Mr. Cash: Fearless? Aw, no. Drug addition scares me. I'm afraid of that. Since I left the hospital last November I've not had one sleeping pill, not one tanquilizer. I stay away from people who are using or drinking. And I fear God. That's about all the things I'm afraid of that I want to talk about.
Marilyn Morris__123 Hickory Hill Drive Tullahoma, TN 37388

October 23, 2000

Mr. Peter Cooper
Nashville Tennessean
Nashville, TN
Dear Mr. Cooper,
Re: Your article concerning Mr. Johnny Cash and the promotion of his most recent album.
I am a fan of Johnny Cash. I listen to him often and read every scrap of written info about him and have for years. I say, ³Congratulations, Johnny Cash!²
My concern is your use of Mr. Cash¹s rather flippant comments concerning his misdiagnosis of Multi-System Atrophy/Shy-Drager Syndrome. Many patients and care givers had heard of Mr. Cash¹s diagnosis of SDS/MSA and wondered why he appeared to be unwilling to become very public about the disease in an attempt to raise public awareness of this devastating neurological disease. The people suffering with this disease and their families need a very vocal public figure who will lead the charge to find the cause and one day a cure.
Multi-System Atrophy/ Shy-drager Syndrome is a devastating neurological disease. If Mr. Cash had truly had this disease he might not be dead at this point, but only feel as though he might be. Apparently, there is no known cause nor cure of this disease and no set pattern of illness, even though research has been going on for at least 30 years. Dr. David Robertson of Vanderbilt¹s Autonomic Research program is renowned in his work. In addition, there are doctors at Case Western in Cleveland, OH, and Dr. Roger Bannister (four minute mile fame) in England working to find a cause and then a cure.
I speak with the voice of a wife who has watched her husband¹s health deteriorate over a period of time. This is a truly a tragic illness and one in which little is known other than the fact that it effects many areas of the brain and its ability to communicate with the autonomic nervous system.
We have been blessed with knowledgeable physicians. We see Dr. Tom Davis, neurologist, and Dr. David Milam, urologist, both at Vanderbilt. Dr. Steve Bills, internal medicine, and Dr. Suzanne Collier, gastroenterology, both in Tullahoma. I am enclosing a brief description of the many medical problems that my husband has experienced that are probably associated with the disease.
We recently attended a national support group meeting in Cleveland, Oh, where we learned that this illness touches the lives of the young and old, men and women, the craftsman and the professional. There were people in attendance at this conference from Texas, California, Massachusetts, Connecticut, Canada, Ohio, Tennessee, Washington, and other areas.
A local neurologist shared with me recently, that even in our small town, that there are at least three other patients suffering with this devastating disease.
My letter is not to be printed, but comes as a request. I realize that you may well be assigned to cover Arts and Entertainment, but you may have some input to other areas of the newspaper. Please research this illness, talk with the physicians involved. Write and print news articles. Do whatever it takes to help raise the awareness of the people of the world to this illness. Maybe with a raised awareness, there could be money for research which might finally find a cause and then a cure. If you should decide to pursue this area of interest, I would encourage you to talk with the above mentioned physicians. I would be happy to provide address info for several others.
I appreciate your interest in Mr. Cash. I will continue to read about him and to listen to his music. I was interested to see that, apparently in his own quoted words, his health problems come from his own actions. Believe me, people who have Multi-system Atrophy/ Shy-drager Syndrome have no control over what is happening to them.
Thank you for listening to me. My best wishes to you and Mr. Cash.
Respectfully,
Marilyn Morris
e-mail: morriscm@...
phone: 931-455-3108

Aida,
Try Public Health, we get two baths a week out of them now (the second one was
just authorized today). They work on sliding scale and we are at the $12-13
per hour figure, since my retirement is fairly high. It looks as if we will gt
6 hours per week 2 on Monday and 4 on Wednesday. You can probably get a nurse
to come in at least once a week to check his vital signs if the doctor
prescribes it and Medicare would pay for it.
Other than that, they will not help you much. Hospice may offer a little more,
but they do consider themselves to be dealing with end of life situations.
Hospice is right for some situations and wrong for other situations. You must
decide if it is right for you and at what time it is right for you. To get
Hospice help, your doctor must specify that Bill has less than six months to
live, but they can extend that over and over (I don't know how many times).
Hope this helps, Bill and Charlotte
=========================

I agree with your compliments to Charmayne. I too am impressed.
Marilyn in TN

Exp Neurol 2001 Mar;168(1):196-198
Further Evidence for Mitochondrial Dysfunction in Progressive
Supranuclear
Palsy.
Albers DS, Swerdlow RH, Manfredi G, Gajewski C, Yang L, Parker WD, Beal
MF
Department of Neurology and Neuroscience, Weill Medical College of
Cornell
University, New York, New York
[Record supplied by publisher]
Recent data from our laboratory have identified a role for mitochondrial
dysfunction in the pathogenesis of progressive supranuclear palsy (PSP).
To
extend this finding, we measured key parameters of mitochondrial
function in
platelet-derived cytoplasmic hybrid (cybrid) cell lines expressing
mitochondrial
genes from patients with PSP. We observed significant decreases in
aconitase
activity, cellular ATP levels, and oxygen consumption in PSP cybrids as
compared
to control cybrids, further suggesting a contributory role of impaired
mitochondrial energy metabolism in PSP, possibly due to genetic
abnormalities of
mitochondrial DNA. Copyright 2001 Academic Press.
PMID: 11170735

Pam,
I like the part about:
Ways to reduce caregiver stress
* Know what resources are available in your community
Answer - Damn few
* Become educated about MSA and caregiving techniques
Answer - done that :o)
* Get help from family, friends, and community resources
Answer - done that :o) friends, and community resources don't help much
* Take care of yourself by watching your diet, exercising, and getting plenty
of
rest
Answer :o) who are they trying to kid?
* Manage your level of stress by consulting a physician and using relaxation
techniques
Answer - done that :o)
* Accept changes as they occur
Answer - done that :o) - changes o occur too often with MSA
* Engage in legal and financial planning
Answer - done that :o) However, the financial is tough in the USA especially if
you
have to use Medicaid
* Be realistic about what you can do
Good advice!!!
* Give yourself credit for what you have accomplished; don't feel guilty, if
you
lose patience or can't do everything on your own
Good advice, but you still don't feel good about it.
Our big problem n the USA is that they put so many restrictions on community
help
programs - it looks as if they are putting you on a welfare program. Even
though
you paid into Social Security and other taxes, they make you feel guilty about
taking the money. And, if you make over about $30,000 per year, it is almost
impossible to get any help.
My dad's total retirement (government and Social Security) back in the 80's when
he
was in the nursing home was about $1250 pr month. The nursing home was $1400
per
month. Mom would get up at dawn and work her garden for about two hours, then
go to
the nursing home and sit with dad all day feeding him pureed foods from home and
stroking his throat to get him to swallow. At dark, she would go home and go to
bed
- every day for about 30 months. All of the kids lived 100-150 miles away and
could
only help her out on the weekends. He died just as she was about to run out of
savings.
Mom's church members helped as much as they could, but most of her church was
old
also, and many were worse off than she was. Our politicians are already saying
the
USA "cannot afford" Medicare and Social Security, yet they are unwilling to pay
for
the research to find cures for these terriblely expensive disorders. That is
why
England is so eager to become the stem cell research leader of the world - it is
cheaper to cure it than to pay for the care needed.
It's like my dentist used to tell me - you can pay me now at about $150 per year
and
have your own teeth when you are older; or you can pay me $5000 in 35 years to
have
me put in false teeth. A good friend laughed at that, until he paid the $5000
to
have his teeth pulled and got the false teeth. You will pay somehow!
Take care, Bill and Charlotte

Aida,
The sore throat comment makes me wonder about reflux. Is he being treated
for this already or has it been a problem before?
Rose

Sylvia,
Your computer should keep time when it is off as it has a battery in it. To set
the time and date (if you are using WIN 95/98/ME) just doubleclick on the time
in the lower right corner of the screen. In the box that comes up click on the
correct date and the numbers of the time to change them. Then click on apply
Your gasoline prices are almost double ours, when you compare exchange rates and
volume. How far is Prince George? I think you said about 100 km.
Take care, Bill and Charlotte

Thanks for the update. I've been wondering. I, too, had questioned our OB
about this and it didn't sound promising for MSA folks at this time.
I thought maybe this was a way to help my dad, but it doesn't sound like it.
Rose

Hello:
Bill has been doing poorly the last week. BP is 65
standing. He's beginning to have trouble
swallowing-takes a long time to eat. When I ask he
says he has a sore throat. No fever. I feel
exhausted. I think it's time to get some home care.
How much is needed. I heard Medicare won't cover it,
so we will have to pay for it. I'd appreciate any
suggestions on how to go about it.
We had long term care( paid for it for 14 years) but
when he was diagnosed he let it drop because he
thought we'd put him in a Nursing home. I didn't find
out that it had been cancelled until it was too late.
I am still upset about that. I didn't mean for this
message to go on. But, this is another step in
realizing that he is not going to get better. Having
someone come into the house to take care of him makes
it more clear that there is no going back to the way
things were.
Regards,
Bill and Aida

Hi: my husband is a veteran & he is in their system. The problem was
that you have to use their doctors & the med. has to be on their
formulary in order to receive it. So for us it didn't work because we
didn't want to change doctors. Thanks for the info anyway!.
regards,jerrie

Not sure if this was forwarded on to our list previously or not.
Hugs,
Pam