Wiki articles

Perry,
Since I don't get the messages in digest form, I don't know which ones were in
it. However, you can read all of them at

New language for the press corp and others at the White House to get
used to. The White House is
not just getting a new team, but a whole new language. George W. Bush
will be bringing with him
many friends from Texas, and for anyone not born in the Lone Star State,
the Texan accent and the
cowboy colloquialisms can seem a bit strange. Here is a guide to a few
of the more colorful
expressions they might encounter:
1. The engine's runnin' but ain't nobody driving = Not
overly-intelligent
2. As welcome as a skunk at a lawn party (self-explanatory)
3. Tighter than bark on a tree = Not very generous
4.. Big hat, no cattle = All talk and no action
5. We've howdied but we ain't shook yet = We've made a brief
acquaintance, but not been formally
introduced
6. He thinks the sun come up just to hear him crow = He has a pretty
high opinion of himself
7. She's got tongue enough for 10 rows of teeth = That woman can talk
8. It's so dry the trees are bribin' the dogs = We really could use a
little rain around here
9. Just because a chicken has wings doesn't mean it can fly =
Appearances can be deceptive.
10. This ain't my first rodeo = I've been around awhile.
11. He looks like the dog's been keepin' him under the porch = Not the
most handsome of men
12. They ate supper before they said grace = Living in sin
13. Time to paint your butt white and run with the antelope = Stop
arguing and do as you're told
14. As full of wind as a corn-eating horse = Rather prone to boasting
15. You can put your boots in the oven, but that doesn't make them
biscuits= You can say whatever
you want about something, but that doesn't change what it is.
16. Yankees are kinda like hemorrhoids, they're not too bad when they
come down and go back up,
but they're a real pain in the butt when they come down and stay.

Steve,
CALL THE DOCTOR. The swelling could be an infection that has settled
in your elbow, and needs to be checked out. It could be nothing, but
if it was me I would at least make the call.
We are expecting the same snow storm, and I think it makes sense to
speak to the doc and get whatever attention necessary before it
hits. Sounds like it's going to be a BIG one!
Carol & Rob
Lexington, Mass.

Can someone send me a copy of #575? For some reason when I tried to open
it it locked up my email client. It must have developed a problem in
transit.
Perry Sennewald 804-244-0018

available.

Steve,
Call the doctor!!!! It could be an infection or a reaction to a med, but
whatever it is yo need to talk to the doctor about it. Better to be safe than
sorry with MSA.
We are currently getting rain, but snow is predicted late today or tomorrow.
Call the doc NOW!
Take care, Bil and Charlotte

Good Mornng,
We are expecting a major snowfall in Phila. today, to be measured in
feet not inches. We expect to be "holed up" for a few days.
Last evening I noticed a baseball sized swelling on my elbow. It
doesn't hurt, I don't think its an injury. I was having a
respiratory problem and went to doctors on Wednesday. He prescribed
an antibiotic,Biaxin, and an inhalent, Albuterol. I also had
frequent urination and diarrhea. I still have the swelling. I
stopped the new drugs but continue to take my Sinemet and Comtan.
Any thoughts from the MSA community?
Thanks
Steve Crawford

We would like to remind you of this upcoming event.
Kentucky/Southern Indiana MSA/SDS Support Group Meeting
Date: Sunday, March 11, 2001
Time: 3:00PM GMT
Date: Sunday, March 11, 2001
Time: 3 PM
Location: Cook Memorial Methodist Church
2915 South Walford Drive
Jeffersonville, Indiana
(Louisville, Kentucky area)
Contact: Harriet Gossman
Jeffersonville, IN
email: Harriettlpn2@...
phone: (812)288-7532
or
Contact: Judy and Bob Miller
Louisville, KY
email: B1952miller@...
phone:(502)253-9379
Agenda: Video presentations from a previous National MSA
meeting.

Hi Ann
I don't know if you will get this as I am not sure if I am doing it
right!
We get Snow White at least once a day!!!!! It does go straight into
quarantine, but where it comes from I have no idea. Makes me think
it must be an independent spammer as I am not presently on the
group. This started after I had to drop out of the group for now.
Love Anne

This is an interesting note. I was in education as well. I began in the Tullahoma school system 1966 as a teacher and taught in Coffee County Schools before that. It would be a small world if we actually worked together.
Your son might know my husband by the name of Speedy.
Marilyn in TN

Hi Katie,
My husband never had a problem with his heart but when he was in the hospital
in December they did a chemical stress test and found a moderate blockage.
His Doctor increased his Lopressor and he wears a nitro patch everyday and we
were instructed to add an aspirin daily too. Due to Mark's condition the
Doctors didn't want to put him through any other procedure.
Hope this helps, take care,
Judy Whittaker

Hi Bill,
Don't you just love that roll around table? I have one for Mark's bedroom
too, it has 3 shelves and I keep the same stuff on it that you do. It's so
handy, I roll it close to the bed while I'm working on him then just roll it
over in the corner when I'm done. Mark even likes to use his for a stand
beside the bed to keep his remote control and hankies on.
Take Care,
Judy

would like to change to digest please.

Marilyn and Charles, Thank you for sending me your inspirational letters. Apologies for late kisses. My son Tom from Alabama spent a week with us and helped so much. Son John who lives 3 houses down the road had his first teaching job and first apartment in Tullahoma. Long time ago, He enjoyed that area immensely. Springhill, LA is northwest on the Arkansas line, about 100 miles from Shreveport. Son John is principal in a K-12 school 6 miles away in Arkansas. He was band instructor in Springhill, retired, missed teaching and is near retirement again. We depend on him too much. Best wishes and better health to both of you. LA Louise

Ann,I'm in Louisiana and my Springhill is northwest on the Arkansas line.
Little bitty town to me, 7,000 more or less and they roll up the sidewalks
nights and weekends. Nice community , friendly , you get to know your
neighbors, lotsa horsies and enough horsing around to make gossip
interesting. The weather is a challenge now, Almost spring because the
frogs are chirpingaway. Jan and I used to pass a Soddy Daisy on fishing
trips from "home" in Huntsville, AL. Can't remember which state it was in.
Strange name Soddy. What does it mean and where are you? LA Louise
Azaleas are showing color!

I was diagnosed almost 2 years ago and I have been to Europe three
time since then. Tell your dad to be careful but go.
Where does he want to go? Access is not as good as here but ask and
people want to help.
If you have specific questions, email me. I don't keep up on the
messages here very well. If I know to look I'ld be happy to converse
here.
David Haight davidh8@...

I just got Snow white again, it was titled Hahaha, Snowwhite and the
seven dwarfs.
The message that I got just preceding that was Joan Johnson
E-mail
Thanking Bill for the addresses.
Did anyone get it also.
Ann from Soddy,TN

Catherine,
The only thing I can think of is possible dehydration. Are you
drinking LOTS of water? Lack of hydration can make the secretions
thicker and harder to clear.
I think I would let the SDS doc know what's going on. At the very
least, just so he/she has a complete picture.
Carol & Rob

Bill - thanks for White House email addresses - Joan & Tom

Catherine,
Yes let all doctors know! MSA (SDS) often causes swallowing problems which can
cause aspiration into the lungs causing pneumonia. A swallowing study and some
speech therapy can help greatly with this problem, especially early in the
disorder. Liquids are the most difficult thing for most MSA patients to
swallow.
Take care, Bill and Charlotte
=====================================

My wife has used Comtan (entacapone) for over a year now. It does seem to help
the action of the Sinemet at first, but does not help as much now. It did
increase her dyskinesia also. Several others have also tried it and I have not
heard much after the initial reports. The doctor added amantadine to stop the
dyskinesia.
Take care, Bill and Charlotte

Hi Ginny,
I'm so sorry for your loss. I'm glad that you've remained active in
spreading knowledge about these similar disorders. There are several of us
who are subscribed to various Parkinson Plus mailing lists in an effort to
learn and share information. The similarities are striking and I believe we
have a stronger voice if we try to join together with these other groups.
If you're interested here's how to join:
Lewy Body Dementia list:

Is that Springhill TN or Springhill Fla. I have a cousin in Springhill
Fla.
Ann from Soddy,TN

Bill,
We've actually tried the Easy Pivot & the Hoyer.
Easy Pivot is MUCH easier & more steady - for both the patient & caregiver.
There is no weight on the patient's legs. They are still held up with a sling under their upper thighs & behind their back. And the slings are very easy to put on.
No, the rods do not catch the caregiver in an awkward position. It is very easy to use & stable. Much more so than the Hoyer.
Also, for people with severe ataxia, like John, the Hoyer can be a very scary thing.
No, it is not meant for moving the patient around in the bed - only for transferring.
With {{{Hugs}}}
Charmayne
====================================================

Hello...
I've got a quick question to ask...first let me remind you that I'm
35 with the very earliest stages of SDS. My question concerns a
seemingly unrelated issue. I have pneumonia and I can't seem to kick
it...we've done antibiotics and I'm now on a second round of stronger
steroids (yuck). I'm doing this all through my pulminary doctor (I
have him because I have asthma). Is the fact that it's hanging on
related in any way to the SDS? Should I let my other doctor know
about it? Any thoughts?
Catherine

I admirer your strength and your courage. I feel as though I am a real
'wimp' sometimes, when I get bogged down in the emotional part of all of
this.
Marilyn in TN

I am interested to know if someone has experience of
entacapone/comtess drugs ?

Katie,
It is entirely possible to have heart problems along with SDS or MSA. Anne in
Australia has had heart problems for years. It is probably not directly related
to MSA/SDS. However, high BP from reclining could have something to do with it.
Have they checked you for infection of some kind? Infection often causes heart
problems as does dehydration and low potassium (which can be caused by florinef
or midodrine). Best to talk to your doctor about all possibilities.
Take care, Bill and Charlotte

Louise,

Yes, at some point unless they come up with a cure, things will get too bad. I am writing form experience in hope that some people will be able to stretch there movement long enough for a cure to appear. Charlotte gained at least two years due to regular exercise and the PEG. The PEG and speech therapy have also helped her continue to eat food by mouth, which helps her general attitude toward life. :o) after all, what would life without chocolate be like :o)

I think the major problem with keeping the exercise up is a feeling that it does no good in the mind of the patient and they lose incentive. However, the patient must realize that even though they can not stand or walk by themselves, they can still bear weight and help the caregivers with transfers. The exercise also keeps you out of the fetal position paralyses that you hear about here. Exercising now, can help your movement by as much as two years 5-10 years from now. If they find a cure in 5-10 years, that two years could mean a lot to you. Don't look for exercise to cure you - it won't! But it may keep you moving until there is a cure.

Take care, Bill and Charlotte

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

Bill et al,
I'm sure much of the movement in bed from MSA patients is
uncontrollable. In my case it is truly the difficulty in turning over. Pain
in my hips and shoulders and general weakness in lower extremities makes
turning from side to side in bed a major event.
Barb Pond in VA.

Charmayne, (What are you doing up so late?)

If you look closely at the Easy Pivot, the idea is great, but in actuality it looks very complicated and takes up a lot of space for the job it is designed to do - transfer a patient from chair to bed or another chair. I also worry about the leverage it may throw to the caregiver, especially a small caregiver with a large patient. What happens if the legs of the patient suddenly give way - does the caregiver become airborne :o) I am particularly worried about the lever rods on each side of the caregiver in case the patient suddenly goes down to one side. Is there a pole in front of the patient to support the patients weight? The device looks stable from the front, but I don't think it has any leverage assistance from the side and back, and those rods could catch the caregiver in an awkward position. This device will not help in moving the patient in bed, only transferring them. It does not look as if it can help get the patient adjusted in bed either, only sit them on
the edge of the bed.

The Hoyer lift is big and clumsy but it WORKS. You can work around the slings problem by tying one side down or adapting it to work. I.E. if you only want to move the patient from one side of the bed to the other - with a flat sling under the patient, fasten the one side (where you want the patient to end up) - to the frame of the bed. then lift the other side up a few inches (experiment) - now when you push on the patient, you have gravity helping you.

When we were in the rehab center - they had all kinds of special slings for special purposes - including handling a 600 pound man who was completely helpless. It was interesting to see a 90 pound therapist moving him around. If the patient is worried about swinging around, you can use a few bungee cords to steady them from the swaying. I have not used a Hoyer lift, but did use engine lifts to move 600-1000 pound equipment and maneuver it into place often. We did not want it swaying around either. Once you learn to work with the center of gravity the lift can do a lot :o) I know, a person's center of gravity changes more than an engine :o)

There is another option. A lift on the ceiling attached to a rail to move it. I have considered this for our bathroom. It requires permanent installation and is more expensive. Talk to an occupational therapist in your home, where they can see you and the tasks you need to accomplish, before you commit to any device. Medicare will pay for a therapist on a doctor's orders.

You also need to look at storage space for all the gadgets you need. In our master bedroom (11 x 15 feet), we have the hospital bed, the PEG stand and pump, one dresser, two bedside tables, the wheelchair, bedside potty, the TV on a moveable microwave table and a shelf for incontinence supplies. I also have a small roll around table for brushing teeth, sponge baths, changing PEG dressings, etc. It's full in there and the shower chair gets stored in the dining room.

Take care, Bill and Charlotte

Hi everyone
Haven't posted in ages... I am having heart problems and not sure if
that is something that goes with sd. I have had two episodes of
chest pain and numbness/tingling in my left arm. Both times I had an
abnormal ekg, but they did one in between episodes that was normal.
I will be seeing a cardiologist soon. Also, does anyone know what
kind of effect that beta blockers can have on someone with sds, like
will they worsen my OH?
Thanks
be well
katie
e-mail ktlivesoutloud@...

I am proud of you and Deborah, Pam. keep asking questions.
Bernice

Bernice here again. I used a draw sheet in Ken's bed. A regular sheet
folded in half, positioned between shoulders and knees. I turned Ken about
every two hours (he couldn't move at all) by crossing one leg over the way I
wanted him to roll and them grabbing the sheet behind him and pulling it
toward me. My Ken weighed close to 200 lbs, and once you learn the body
mechanics of rolling someone, it is fairly easy. Make sure you bend your
knees and stand with your legs at least shoulder width apart,( actually for
me - the wider the better) one foot behind the other. I did this all night
long, and when he was in bed during the day, although until the last week of
his life, he spent most of the day sitting up in his wheel chair, and for
that I used the Hoyer lift. I found it easy enough to operate, but hard to
push on the carpet, so I put a plastic office chair mat down beside his bed
so I could roll it more easily.

Yo Bill, Wrote you on the 2nd but the computer ate my letter before it was finished. Thank you for writing. I, like you, am a "hopeless optimist." Didn't mean to complain--but ya gotta be aware of a situation before you can deal with it--won't know what I think until I hear what I say--that kind of sorting out procedure process. Jan and I have always "tried harder." His onset for incontinence, impotence, forgetfulness and general physical incapacities emerged 24 years ago. Denial and stubborness plus extreme intelligence carried him for years. His gentle personality and loner pursuits helped also. Spasm meds became useless 3 years ago. Several rehab institutionalizations after hospitalization and later home PT sessions helped movement despite dementia and brain atrophy. His devoted eye to eye PT could no longer justify services Xmas 1999. OT didn't help as much as speech and swallowing therapy. BUT passive exercise and massage continued to slow the
paralysis. We still use the orthepedic bar and use his "hang on grip" to move his arms while I pulley the ropes. Moving legs that way is too painful now. Neuro and Drs. have given up. Massage lady, too, regretfully. Lifts and chairs , pegs and pumps all tried but BP drops and stamina lessens. With MSA, 74 is pretty good. I custom make contracture cradles, headrests, garments of STYLE plus boots for the guy. Still, we're about used up and it isn't fun. Our "progression" shared may help some early stagers plan ahead and get some action on the cures. Time flies for caregivers. Thanks for all your advice and detailed solutions over the years. Jan and I need and enjoy your friendship. LA Louise in Springhill where Spring has sprung too many leaks.

I sincerely hope that you and Mark won't need a fancy bed because the requirements are painful to consider. Jan is mute, can reply with an occasional inappropriate yes, no or fine and qualifies under medicare due to "professionally" induced trauma wounds. Aging impaired homebound caregiver inabilities have nothing to do with acquisition of rotating or airflow devices. Jan has an Invacare Microair Turn Q Plus unit delivered 3 days ago by a JPS (just plain stupid) set up man who knows NOTHING about the equipment or maintenance and as is typical brings no instruction or specs book, has wasted 10 hours driving time and has yet to provide necessaries for operation. We've had Hil-Rom silk air overlay, then mattress,next edge ridged hospital Acuair, then really inefficiently counseled Pulmonex, agonized thru company change to Invacare, from VA to Medicare and if functional this megabucks mega aggravation will provide comfort. The bed frightens Jan and I hold him during
changes. He cannot understand the movements and my repressed? anger disturbs him. He IS better off at home with me--there is so much wrong with him. This forum is invaluable to our survival and your concern a welcomed help. We must be crazy to defy the inevitable. LA lala?? Louise in Springhill where diversion ditch digging is a daily affair.

For those needing lifts/transferring assistance,
check out the 'Easy Pivot' machines:
http://www.easypivot.com/
John has tried the most basic one while in PT & it is extremely easy & stable to use. Much more so than the Hoyer lift. Also, John has a huge fear of falling, & any swaying movement, which you do get with the hoyer.
However, as Judy Mears pointed out to me, it would not get a patient off of the floor if need be. The Hoyer lift could. (John's beyond worrying about that.)
The only drawback is the position it puts the patient into! But then, we caregivers may be able to use that to our advantage :)
AND..........our insurance would cover the Hoyer lift, but not the Easy Pivot :( :( :(
With {{{Hugs}}}
Charmayne

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^
***"Charmayne's MSA/SDS Pages"***
http://freepages.health.rootsweb.com/~charmayn/
_ _ _ _
{\o/\o/} we are each of us angels with only {\o/\o/}
jgs /_\/_\ one wing - and can only fly by /_\/_\
" " embracing each other " "
^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

Invacare manufactures oversized battery operated lifts with a safer gravity center for heavy or tall persons plus transport and toileting slings in many sizes. Fabric is poly mesh and launders. Be careful when using poly on nylon chairs as immobile patients using seat belts will still slide out. Dollar store plastic screen shelf liner under buttocks helps but non porous fabrics initiate skin breakdown from shear and dampness if sweats are a problem. Plastic diaper slippage may require between leg strap restraint with sling chair anchor during van transport. Jan required cotton canvas with cotton quilting during water retention swelling phases. I sew but upholsterers given patterns will make them. Strap handles on bed draws facilitate body mechanics for pull and roll manuevers. Elevating the flat bed to movers center of gravity and inhaling during pull is a backsaver. When using sophisticated equipment be aware of emergency override procedures. Small caregivers with
large patients have special problems with weight requirements.

Hi Bill,
Yep, I've been busy tonight, sometimes I can only get time to send messages
on a Friday night so I feel I'm using my time wisely. We get to sleep late
tomorrow morning. Mark's caregiver, Valencia, came today toting 3 bags of
Reeses Cups, miniatures, of course, cause he can put the whole thing in his
mouth. She was a little upset because he was out!
I'm heading to bed shortly but just had to send my messages to the White
House!
Take Care,
Judy

Judy,

Now we are really looing at two peas in the same pod. Reeses Peaniy butter cups are one of Charlotte's favorites too especially the minitures. Does Mark go for 5th Avenues also? :o) Do you suppose Chocolate and peanut butter is the common thing for MSA :o) I buy the Shout at Price-Costco in huge containers with a refillable spray bottle.

Have to soak Charlotte's shirts with it. The red saliva must be spagetti sauce. Yes she does have brown saliva after candy.

We will educate these doctors about MSA or die trying :o) This email to to reply to all of your email tonight, you've been busy this evening/morning

Get to bed, Mark will be wanting his meds early in the morning. I've got the 17 year old to get to bed SOON!

Take care, Bill and Charlotte

Hi all,
I sent my plea to all four address and got four back like the one that
follows. Very quick response, hopefully, someone will take notice.
Take Care,
Judy

I am having a great time picturing Judy hauling Mark across the bed and every which way in the sling. He'd better behave or she'll just snap him around in that thing! Sounds like a regular amusement park at your house, Judy.
Jane

Hi Jane,
Amusement park doesn't even capture our home. It's more like cartoons, Mark
in the sling in the Hoyer Lift, Rebecca (the new AMAZON puppy) biting at his
feet as I wheel him off to bed, Christine sleeping in Mark's bed when I'm
trying to drop him there, and little William, sitting at my feet trying to
help. Quit a circus, we laugh every minute.
Becca is HUGE, weighs in at 52 pounds and is only 7 months old. Bigger than
Christine now, a total YARD DOG, nothing like prissy Christine and sweet
William. Our back yard gets dug up daily, she delights in chasing the poor
squirrels, eats dirt, stones, sticks, anything that won't eat her. I took
Mark a ride today when I got home from work and as I was pushing him out the
front door, Becca decided to flush the birds out of the front bushes. I
thought I saw a bird fly in the front door but Mark said I was "crazy".
Guess not, when we got back there was a big old brown thrush in the house. I
opened all the doors and tried to get it to fly out but it only wanted to fly
around Mark and finally ended up sitting in his lap (while he was screaming
like a two year old). It did fly out the front door after about 15 minutes.
My second niece, Erica, is graduating in May from Miami and we are
considering taking the trip to be there but haven't quit figured out if we
can make it or not. I think we can, Mark would love to go, but, hauling Mark
and 3 poodles is a real feat for me but I could probably be up to the
challenge. I'll give you a call if we head that way. It would great to see
you again.
Take Care,
Judy

Hi Danielle,
Your letter was great. Thanks so much for allowing us to read it. I'm on my
way to writing one but am not near as good with words as you and Kaye are.
I'll just do my best and hope that maybe it will help.
Thanks again, take care,
Judy Whittaker

Hi Kaye,
That was beautiful. I cried when I read the "walk your daughter down the
isle" part. Mark's daughter is getting married this fall and her brother is
walking her down the isle. His daughter was here last weekend researching
sites on Kiawah Island for the wedding and Mark, in his own little voice,
asked her "do you want me to give you away, because if you do, I'd have to
ride my scooter". It was like listening to a child, he actually meant it and
his dauther and I tried to hide our tears when he asked. Then we all laughed
at the just how funny that would be (Mark has no idea that he probably isn't
able to ride his scooter) but we just let him think he could.
Take Care,
Judy Whittaker

Hi all,
We do use the Hoyer Lift to get Mark in and out of bed and especially at
night to take him from his lift chair to bed. I always put a sling under him
(we have two) wherever he is in case he's too tired to transfer. He sits on
one sling while in the lift chair and I just lift him up and wheel him off to
the bedroom. Mark can't turn over, hasn't been able to for years so he
sleeps on his back only. In the mornings I roll him over after I dress him,
put the sling under him and roll him back so I can lift him out of bed. Mark
also weighs about 200 pounds so I couldn't get him anywhere without the sling.
I think you can get get the sling withoutht the Hoyer Lift at medical supply
stores and I do suppose that if your patient was laying on the sling you
could just pull up one side and flip them over. They are very light weight
and are also good for positioning in bed. I can pull Mark clear across the
bed on his sling if I need to.
Take Care,
Judy Whittaker

Hi again Bill,
You are right, I've talked to all of Mark's Doctors so much about this site
that now when we go for appointments they ask me "what's new on the site"
because they feel that since we as a group have so much more experience with
this disorder that they like hearing what works for some others that we have
not tried (or, that they have not heard about)! Mark's Neuro always demands
that I call him if I hear anything from the site that I think Mark might
benefit from.
Take Care,
Judy

Hi Bill,
You are a true gem, I'm off to send the President a message as soon as I
finish the list messages.
Thanks again,
Judy

Hi Jerry,
We must be on the same wave length, I have the same thought about E-mailing
the President or the White House, if you find the right address, please let
us know.
Take Care,
Judy Whittaker

Hi Louise,
After reading your message about turning your husband every three hours I
thought about the bed Mark had in the hospital that rotated him, blew up and
down as he moved and was so great I asked about getting one. WOW, those darn
beds cost $100,000 but one of the girls at the hospital told me that they
have had at least two patients that were able to get one of those beds
through insurance or Medicare due to their conditions. We're not there yet
but I might try for one if the need arises.
Take Care,
Judy Whittaker

Yes my husband has been on it for over 4 years . when all else failed the
Dr.
put him on it because his bowl has slowed down.
So much now that they have to startit by digging some out and than he can
pas s
it.
He is in a nurseing home as I can not take care of him as he is total care
cann,t feed him self or stand on his feet
Best to you and all the rest that are suffering from MSA.
Blanche

I know my parents feel exactly the same way. They
really think it's funny when they are gone for a long
evening and we can't get them on the phone. When they
return, they usually have many worried messages from
my sisters and me. They should let us know where
they're going and when they'll be home, shouldn't
they? My mother just says, "Now you know how we felt
all those years." :-)
She's also fond of saying about her grandchildren (my
sons), "The little angels came on Friday and the
little devils left on Sunday." I guess there's a
reason God gives us children when we are younger.
Melanie in OK

Kaye,
Thank you for emailing the President re: stem cell research. I also
sent him an email today much like yours. I agree that he should hear
from as many of us as possible.
Jerry Cash

Hi all. It's kaye. Please take the time to read this. Thanks. I wanted to
share with you a copy of an email that I have just sent to the Pres, the VP,
Mrs. Pres, Mrs. VP, my NJ state gov, and NJ's US senators. I hope you'll join
me in doing the same. All but one of the politicians representing me had email
addresses. This research is critical for our loved ones. Ask your
brothers/sisters/sons/daughters, neighbors and friends to send one too.
Dear President Bush,
While I was delighted to hear about the monies being tagged for NIH research, I
was somewhat disappointed in the fact that you took the time to mention cancer,
in particular a fellow politician suffering from same. So I guess that means
that the disease that my 48 year old husband died from last July 23, 2000 isn't
as important, unless of course a member of Congress is stricken (Heaven and God
Forbid, with sincerity).
My husband suffered from Multiple System Atrophy. This disease takes EVERYTHING
from you. Your ability to walk. Your ability to talk. Your ability to throw a
baseball with your 10 year old son. Your ability to walk your 24 year old
daughter down the aisle on her wedding day. Your ability to kiss your wife,
even gently. You can no longer eat, drink, even swallow. Before this disease
finishes with you, you are prone, in a bed, whether it in your home or nursing
home. You are in diapers. You have to be catherized. There is absolutely ZERO
quality of life, especially the last year. YES, it takes YEARS to die with this
disease. As of this date, there is NO TREATMENT, NO CURE.
I am not too proud to please beg of you to allow the continuation of brain stem
cell research. It is HERE that, if not a cure, then certainly a treatment can
be found. I, as well as many others, am convinced that many of these
neurological diseases are so closely related and such progress is being made in
the area of Parkinsons, that once something is found for ONE, all the other
debilitating, family and life robbing diseases will follow.
BUT, one swipe of your pen can kill the hopes and prayers of so many suffering.
With all due respect, sir, the fact is that these brain stem cells can be put to
a GOOD and WORTHY and LIFE-SAVING cause. Please don't stop the momentum. Do I
believe that God cries each time an embryo is aborted? Yes, I do. And it is
for this reason that I also believe that He has blessed our young scientists
with the creativity and passion to make something wonderful happen out of an
otherwise bleak situation.
Most sincerely yours,

Melanie,
As long as you remember that you know a lot about MSA and not a lot about
medicine as a whole, you are okay. That is where we caregivers and knowledgable
patients walk a fine line. We know the MSA symptoms and we know what helps
different people with certain symptoms, but we do not know medicine as a whole.
W need to learn what info the doctor needs to help us and how to present it to
the doctor.
A great doctor may not always have a good "bedside manner" and you may have to
ask a simple question like "would an anti-spasm medicine work to relieve my
patient's cramping up into the fetal position?" This often works better than "I
want the patient on Baclofen!" For one thing the doctor may know of a condition
which would hamper your patient from taking a specific medicine.
Take care, Bill and Charlotte

From the experience of my husband (patient) and myself (caregiver), I am
sure that your parrents appreciate you. Marilyn in TN

Now I'm laughing at your email! I drive Drs. (all
Drs.) crazy with my questions. I figure I'm paying for
their ski trips to Vail, they can answer my questions.
My dad asked me to go to Houston with him because he
knows I have done the most research on MSA and he
wants me to ask questions relevant to the research
I've done.
His present neurologist (who is not a specialist in
MSA) is tickled with me and suggested to my father
that I take over his case because I know a lot more
about MSA than he does. My father actually prints off
emails I send him and takes them to the Dr.
I also plan to continue "helping" all I can. I think
my parents secretly appreciate it. :-)

Joan,
Hope your Shake, rattle and roll is over. I have heard of 25 pound wheelchairs,
but never 10 pounds. Some chairs have detachable wheels which cuts the weight
almost in half.
Take care Bill and Charlotte

Hello Karla,
I'm new at this and there are several people
who will probably respond with great first hand
advice, but I can tell you that my brother who
was diagnosed last month is now taking both
physical and speech therapy. He and his wife also
walk their dog every evening as well.
He says the PT makes him pretty tired (for instance
he had PT yesterday and he was very tired last
evening when I talked to him) but it also makes
him feel better generally.
Hope this helps.
Jerry Cash

Laughing about the 'kids ask questions' comments.
When mom's disorder wass too obvious to deny or ignore byt we had NO IDEA
WHATSOEVER what was wrong, my sister and I compiled a list of all the
various problems (large and small) that she was having. Even we were
shocked by the length of the list as it became apparent ot us that the
pattern was failure of everything. We went with mom and dad for a visit to
her kindly old internist who had blow off explanations for most of her
symptoms (getting older... etc.) and didn't get the big picture. So we
found another doc, made an appointment, and asked for her records to be sent
over.
Along with the records, the original doc sent a note that said, "Be ready in
case the daughters come. They have a lot of questions." (I don't think he
intended it as a compliment) Deborah and I read that and said, "Yep. We got
lots of questions. We're good!" Mom and dad cackled about us 'helping' to
ask questions and get information. We 'help' them with a lot of decisions
about mom's treatment and care, also. LOL Most of the time they are glad
for the team approach, but I imagine they just look at each other and sigh
sometimes when we are not around.
Doesn't matter to us. We're gonna keep on helping as much as we can. :-p
Pamela Womack
Professor of Developmental Studies
Tomball College
30555 Tomball Parkway
Tomball, TX 77375-4036
(281) 351 - 3345
pamela.womack@...

Doctor has Rx'd ENULOSE (lactulose solution USP) for constipation. New to me.
I'd appreciate any comments from those who have used it or had experience
with someone who has.
Thanks Barb Pond in VA.

My father's doctor has recommended only isommetrics,
but other people have said that MSA patients need to
exercise,"if you don't use it, you lose it". Does
anyone have any input on exercise and what might be a
good idea?
Thanks,
Karla

I suggest you talk with your local police/fire/rescue to see how they
respond to calls from these devices. A relative of mine had now that
came with a dispatch service. When she fell and broke her hip she
used it, the dispatcher sent the paramedics to her house, and when
they found the door locked they left. She was found later that
evening by a tenant.
Probably you can sign a form in advance that gives the
police/fire/paramedics permission to enter your home, breaking in if
necessary, in respons to an emergency call. Locally, merchants
execute a document of that sort allowing police to enter their stores
when the owner is not there.

Hello Everyone:
Just got back from the ER, and they couldn't reomove
all seven stiches from Bill's hand because he has an
infection-cellulitis. They put him on antibiotics/
500mg-4x a day. He has to go back tomorrow to check
the wound. His bp is 90/70 sitting. He feels fatigued,
and the doctor scared him.
We did everything possible this week to avoid
infection, but this disease is insidious. I need
support through this because I am also frightened.
There is so much beyond our control, but I would like
to hear about actions we can take to deal with this
infection.
Regards,
Aida and Bill

We were at home during the earthquake - it was an amazing experience. Tom
was upstairs, I was in the kitchen watching the whole room rippling and yet
nothing falling out of the shelves - no cracks, no damage that we yet know
of. Since things were not crashing, it was exciting rather than terrifying.
Tom is BIG on earthquake preparedness and I thought we finally had the big
one - however, this was not the fault they keep warning us about.
Someone mentioned a wheelchair that weighed 10 lbs - is there such an item.
We too are planning a trip and are looking into a lightweight wheelchair.
Tom & Joan

Raymond,
Do you happen know an email or mailing address to write to the
White House to support stem cell research. If so, I would
be interesting in doing that.
Otherwise, I suppose one could just write the President in
care of the White House?
I agree that stem cells research appears to fundamental to
almost all of the promising research that offers hope of
regeneration of damage neurological systems.
Best regards,
Jerry Cash

Yes, Jan(husband) has severe torsion dystonia, torticollis(flexor neck twist
backwards), contractures (right foot with heel immovable 2" from anus,rigid)
left foot has drop with intermittent swelling , heel 4" from buttocks, knees
compressed , back twist unbending with approx 45 degree list to left when
upper torso is flat on mattress. If 10 or 12 cement blocks were anchored
to a metal porch swing and the whole unit twisted in the center (head
lolling out one end and bent knees, dropped foot out the other) so it would
pivot balanced or rock like a cradle pushed from either end you'd have Jan's
immovable 200# frame. Contractures will draw him to a twisted fetal
position. Bed rails and his 6'4" frame present more problems when moving
him every 3 hours, to say nothing of wear and tear on me and loss of sleep.
Constructive?? discussion is most welcome. LA Louise where floods and
tornadoes and storms seem unending.

Hi all,
Note that if they do not make a decision in two weeks on stem cell research, it
research will halt research in progress. That may kill the hopes of students
working on projects right now. Researchers can not work without pay and this is
the time of year that grad students are looking for grant money to pay for next
years tuition. Therefore, if the decision is not made, it may stop a top
researcher from doing this reearch and change to a new field.
Also Bush is raising the funding, but has not said much about neurological
research. He has mentioed cancer research and AIDS. AIDS already gets a huge
portion (about 100 times as much per patient of Parkinson's) of the research
money. Cancer gets about 10 times as much money per patient as Parkinson's per
patient and heart research is about the same level as cancer.
Take care, Bill and Charlotte
Reuters Health Summary
NIH budget cheered; stem cell decision awaited
By Todd Zwillich
BETHESDA, Md., Feb 28 (Reuters Health) - Leading scientists
at
the National Institutes of Health (NIH) welcomed Health and
Human Services Secretary Tommy Thompson to their campus
today to celebrate a record increase in the institutes'
funding
contained in President Bush's new budget proposal.
Thompson appeared at NIH on the same day that the
president's
budget is to be officially unveiled to lawmakers on Capitol
Hill. The
budget asks for nearly $2.8 billion in increased funding
for
medical research at NIH, the largest single-year increase
ever
requested for the agency.
"There has been extraordinary support (from Congress) in
the
last few years. The wind remains in our sails," said Dr.
Richard
Klausner, the director of the National Cancer Institute.
While the proposed $2.8 billion dollar increase is a record
for NIH,
the figure falls short of the rate of budget increases the
agency is
supposed to get under a 5-year plan started in 1998.
Thompson
told reporters that "simple arithmetic" means that
researchers
can expect even more money to come from Congress in the
near
future.
The proposal to double the NIH budget between 1998 and 2003
called for a 15% increase in NIH spending every year for 5
years.
The $2.8 billion increase suggested by Bush represents a
13.6%
increase.
"There's going to have to be a $4.1 billion increase in the
next
fiscal year" to reach the 5-year funding goal, Thompson
said.
"Perhaps Congress will see the administration's funding
request
this year and up it," Dr. Francis Collins, director of the
National
Human Genome Research Institute, told Reuters Health.
Sen. Arlen Specter (R-Penn.), chairman of the
appropriations
sub-committee in charge of NIH funding, said through a
spokesman that he was "pleased to see the $2.8 billion
increase,
but in terms of going above and beyond that this year, the
simple
answer is that we don't know if that is possible."
An aide to Sen. Tom Harkin (D-Iowa), a ranking member of
that
committee, added that "If there is an opportunity to
increase (the
NIH budget), Harkin would be supportive."
Still, it remains unclear whether NIH will be able to spend
the
money as freely as many researchers would like. The Bush
administration is still considering whether or not to allow
federal
funding of research on human embryonic stem cells.
Those cells are thought by many scientists to have great
potential
in medical research because of their ability to form many
different
kinds of human tissue. But the research faces strong
opposition
because the cells originate from embryos.
Research using the cells could have an enormous impact on
the
development of treatments for a host of human ailments,
including Alzheimer's disease, Parkinson's disease, and
diabetes, according to Dr. Fred Levine, a microbiologist
and
diabetes researcher at the University of California at San
Diego.
"If you don't fund (stem cell) research, you're narrowing
the
number of avenues we can pursue. It would be a major
setback
for several types of research," he told Reuters Health in
an
interview.
Levine added that a denial of federal funding would slow,
but not
stop, embryonic stem cell research in the United States.
Some
stem cell studies are funded by private organizations,
including
the Juvenile Diabetes Foundation, which spends $1.2 million
per
year on such research, according to spokesperson Randi
Hoffman.
The administration has not yet made a decision on funding
embryonic cell research, Thompson said. But scientists are
eager for a decision since their NIH grant applications are
due in
two weeks.
"I would tell (scientists) to put in the applications" even
while the
administration considers whether or not to fund them, he
said.
© 2001, Reuters Health Information Services

package insert for sinemet notifies patients of possibility of brown
saliiva...which has happened to me intermitently,, but last 2nights mine is
pink; it feels like i also have large canker sore but i cant get a good
look. i'll call m.d. in a.m. darned it my records are at a different o
ffice...saw someone else for a consullt, yuk. thanks for
thoughts. nancy spires

Nancy,
We have never experienced pink or brown saliva. Charlotte's urine is often
dark,
which the Sinemet also produces. However, as you say if you have a canker sore
and it is bleeding a little that could turn your saliva pink. I think going to
the doctor is the best idea. If it is a canker sore they can clear it up in
days.
Take care, Bill and Charlotte
=====================================

The Colorado Support Group Meeting for MSA and other related neuro diseases
meets 10:00am - Noon on 2nd Fridays, NOT all day. Location is correct.

What a great site...thanks.
Suzanne Grimmesey-Kirk, MFT
Quality Care Management
Voice: 884-1647
FAX: 884-1633
I forget who asked for this information but here is a great site with
ideas on devices that can help with day to day tasks:
http://thrash.afternet.com/ef/aids.html
Hugs,
Pam
To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com

Just received this email from 'We Move' -- it looks like they're
researching MSA problems. Hopefully they will come up with answers.

I forget who asked for this information but here is a great site with
ideas on devices that can help with day to day tasks:
http://thrash.afternet.com/ef/aids.html
Hugs,
Pam

Jerry,
There has been mention of using Vitamin E before. One thing to remember with
supplemental vitamins is that overdoses can cause problems of their own. The
human body likes a certain ratio of all vitamins and minerals so overdosing on
one can cause a problem with another i.e. too much sodium (salt) can cause
potassium problems (which all MSA patients have to watch. 400 I.U of vitamin E
per day has been shown to help heart patients, but 3000 I.U. per day has caused
side effects in some people. Read up or talk to a nutritionalist if you are
going to take more than 1000 I.U. of vitamin E per day. I have not studied
folic acid, but would also recommend talking to the nutritionalist about it.
For the heart, cutting back on saturated and polyunsaturated fat and using more
monounsaturated fat helps more to cut free radicals, but they do reccommend 400
I.U of vitamin E also.
Take care, Bill and Charlotte

I've been getting that Snow White attachment for months now, a couple times a
week
usually. The headers don't tell me anything, just an IP address. I've looked
that
up also and I never could narrow it down to anyone I knew. I first thought it
was
perhaps circulating around the list but now I think it's a spammer or spammers
that
have gotten ahold of my email address.
Hugs,
Pam

Thanks, Pam. I was impressed that he took the time to
read my email and have his nurse contact me. I'm even
more impressed now that I see his credentials! :-)
Melanie

Perry,
Smarthome has a devive which attaches to you computer and has a necklace
trigger. If you push the button on the necklace the computer dials up to 4 or 5
pre-programmed numbers until one answers. You can determine what message to put
on it.
Try this site:
http://www.smarthome.com/
I have some of their devices, but not that particular one. Mostly to turn
lights on and off.
Take care, Bill and Charlotte

Yes I've heard of him, I emailed him once and he sent me the full text
of an unpublished article so he's certainly one of the top guys on my
list of helpful researchers.
Here are two articles he's co-written that we reference alot in our
discussions here on the list. He's also written or edited several
neurology books.
http://www.parkinsons-information-exchange-network-online.com/archive/091.html
http://archneur.ama-assn.org/issues/v56n1/abs/noc7799.html
Go to http://www.google.com and enter Joseph Jankovic as the search word
and you'll find even more about him.
Take care,
Pam

Vera,
The last article mentioned another disorder (something neuopathy) and we looked
it up. The symptoms are almost exactly like MSA, but it is caused by nerve
damage rather than by dead brain cells. It sounds as if he will progress a lot
the same, possibly slower. This makes much more sense than some of the sorie we
have heard. It was somwhat callous of him to make that statement about being
dead by now if he had it, especially since he does not seem to know much about
MSA or Shy-Drager. But I think it is more of a relief and reflection of his
doctor's statements.
Take care, Bill and Charlotte

I'd be interested. I've never heard of this. Every doctor my mom saw (MDSs,
back surgeons, neurosurgeons) seemed surprised by the severity of the
symptom. Good luck. Debbie

Melanie, We were trying to convince my mom to go to England right before she
died for a big family event. I envisioned her taking a home health aide
because she would have needed that. Also, she would have needed to have a
relative in England set up a hospital bed somewhere for her and get the name
of a doctor or a hospital for emergencies. Of course, she died when we were
discussing the subject.
I don't have tips about traveling. One thing I do know is that they should
keep it simple: don't be too ambitious about their goals. But what I really
wanted to say was that I firmly believe he should go if he wants to. You
mother is right that it will be too much. So your sister and father should
prepare for that. I wish my mom had had such an opportunity while she was
able. Debbie

I forgot to mention that Dr. Jankovic told my father's
neurologist that head flex in MSA patients is usually
caused by something called "bent spine syndrome". Has
anyone heard of this? I haven't researched it yet, but
I will. If this is what's causing my dad's problem,
there is no treatment. The muscles in his neck seem so
stiff, that I'm not sure it's a spine problem. I'm no
expert, though. I'll let you know what we find out.

I know there was discussion recently about outdoorsy
trips for people with MSA. My father is expressing
interest in going back to Europe for a few days with
my sister. He isn't in a wheelchair right now, but
can't walk more than a few minutes at a time and does
that very slowly. If he did make the trip, he would
definitely have to get a wheelchair.
Has anyone on this list made a trip like this after
being diagnosed? Does anyone know of somewhere I can
get tips on travelling with a disabled person? What
kinds of things do we need to do ahead of time to get
prepared?
He really wants to go (while he is still able, I
think). My mother is discouraging him and thinks it
would be too much for him and my sister, but my sister
is more than willing to do this with him. She's quite
the traveler and would like to do this with my dad. I
say if she's willing to do it and he wants to go, they
should do it. Any thoughts?

Hi All!
I was able to get an appointment for my father to see
Dr. Jankovic at the Movement Disorder Clinic in
Houston. (It's part of the Baylor School of Medicine).
I'm taking my dad so I can ask some questions, and so
my mom can have a little break.
We have been told by many people that Dr. Jankovic is
an expert on movement disorders in general, and has
done a lot of work with MSA patients and people with
dystonia. First of all, has anyone heard of him? My
father's neurologist (not a specialist in mov't
disorders) told my father that Dr. Jankovic is
considered to be among the top 5 mov't disorder
specialists worldwide. Don't know if this is accurate
or not.
My father was dx at Mayo, so we are confident that the
dx was correct. Our primary reason for seeing Dr.
Jankovic is to see if he can help with the "head flex"
problem my father has. I have been told by many people
that if it can be helped, this Dr. is the one who can
do it. While I'm there, I want to ask lots of
questions specific to MSA...the progression, treatment
of symptoms, etc. I also want to get the low-down on
the value of Rilutek for MSA patients. Does anyone
else have any suggestions about things I should
discuss with the Dr.?
Thanks in advance!
Melanie in OK

-Melanie, I used to get cranberry pills for my dog with bladder cancer. I
picked them up at Walmart. I suspect any CVS, etc., stocks them. Remember to
continue with the water, though. Debbie

Hello,
I'm still trying to absorb all of the information our famiy is receiving
from my
brother's neurologist and from other sources, and I'm wondering about the
role, if any, vitamins could play in lessening symptoms or delaying
progression of the disease.
Asked if there were any treatments, his Neurologist indicated that there
were none
(of course) but she did recommend that he take Vitamin E and Folic Acid. I
got the
impresssion that she felt it couldn't hurt and might possibly help -- if
anything would.
Anyone else been advised to take these or other vitamins?
I appreciate all of the information you folks share so readily with others
who
have need of information about this disease.
By the way, I was very happy to hear President Bush propose doubling the
funding for NIH. I've learned of at least one possible research project on
the role
of Insulin Growth Factor 1 (IGF-1) in treating ataxias that might be aided
or
made possible by this funding increase. Of course this research like other
promising research will also rely on stem cell introduction as a vehicle for
treating or repairing denegeration. Anyway, there's no reason that one
should
not have hope for a breakthrough.
Best regards,
Jerry Cash

The importance of having your email address correct!

Visiting nurses can also assist with this. There is a device (I believe it
costs around $15/month) where there is a box which sits connected to the phone
outlet. The patient wears a smaller device around their neck that simply has a
button to push to call 911. 911 immediately returns the call. If they get no
answer, they dispatch.
I live with my Grandmother who had a cardiac arrest several years ago. She was
sent home from the hospital with this device. Gives a good sense of security
for both the patient and their loved ones.
Suzanne Grimmesey-Kirk, MFT
Quality Care Management
Voice: 884-1647
FAX: 884-1633
Perry,
I have a friend that hooked her mother up with a hospital in the area and
she wore a call button on her clothes. She did fall and broke her hip,
the emergency was called right away and then she was called, she was only
six blocks away, and by the time she got there the EMTs were there.
Check with the hospital in you area.
Ann from Soddy, TN
To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com

Vera,
Al uses the 6" wedge and then has a pillow on top of that, He has always
slept on his back, we also have leg wedges to get his feet elevated. I
covered them with plastic and made pillow cases out of twin bed sheets.
I used the plastic to keep them from getting wet if he has an accident.
Thanks goodness I did, because for three months all we did was get up to
go to the john every 45 min to and hr all night, and quite a lot of bed
wetting.
The condom catheter has enabled us to get a nights sleep.
He doesn't snore anymore like he used to. and breathes quite well in his
sleep.
Best to you,
Ann from Soddy, TN

Perry,
I have a friend that hooked her mother up with a hospital in the area and
she wore a call button on her clothes. She did fall and broke her hip,
the emergency was called right away and then she was called, she was only
six blocks away, and by the time she got there the EMTs were there.
Check with the hospital in you area.
Ann from Soddy, TN

I would appreciate advice on and any experience with devices that can be
used to place a telephone call for emergency help.
Terry is in the early stages of MSA/SND with sporadic mobility problems
that some times lead to her falling. When she does fall, she doesn't have
the strength and agility to get up by herself.
My concern is she may fall when I am out - e.g. for grocery shopping. If
she should injure herself requiring immediate attention and can't get to a
phone, it would be critical for her to have the capability to call 911 for
example or me on a cell phone.
Your comments will be appreciated.
Perry Sennewald 804-244-0018

Melanie,
I get them at Wal Mart in the vitamins and herb dept. They are called
Cranberry fruit. They are a capsule.
Most drug stores have them .
Ann from Soddy,TN

Hi Sally:
I haven't heard a thing from you forever, so wanted to see how you
are and how is your father in law doing? Also wanted to ask about you
about Desmopressin. When I first started reading on the list, I came
across the list of meds that Elmer takes that you put in for someone.
In it you had down Desmopressin a nasal spray to decrease urine
output at night. Did this work for Elmer? Some of the other on here
may want to know about it. If you get the time could you let me know
about it.
Hugs Vera

Just wondering if Johnny Cash is in better health then he has been in
two years, Why is he in the hosptial so much with pneumonia?
Still wondering
Vera

Ann:
Does the bed wedge help Al with the breathing at all while he is
sleeping? Just wondering. Does it rest Al to the height that he needs?
Always Vera

Bill :
I was wondering the same thing. Does sound alot like MSA. If it is I
just wished he'd say so. Bring it out in the open so that other's
would know about this awful illness.
Coming from a wet California.
Vera
Thinking of all of you in the quake, hope all are ok.

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.
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 two passages
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 fearless
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.

I've never heard of cranberry pills, but I was told by
my Dr. to drink cranberry juice to help prevent
bladder infections, which I sometimes get. Do you get
the pills in a health food store?
Melanie

You'll find info on MSA chats at: http://freepages.health.rootsweb.com/~charmayn/chats.html
Also don't forget :) :
Memorials: http://freepages.health.rootsweb.com/~charmayn/memorials.html
Photos: http://freepages.health.rootsweb.com/~charmayn/photos.html
Support organizations, meetings and conferences: http://freepages.health.rootsweb.com/~charmayn/support.html
Donations/Fundraisers : http://freepages.health.rootsweb.com/~charmayn/donate.html
Scientific Information: http://freepages.health.rootsweb.com/~charmayn/scientific.html
Research: http://freepages.health.rootsweb.com/~charmayn/research.html
Doctors & Clinics: http://freepages.health.rootsweb.com/~charmayn/doctors.html
Disorders Similar to MSA: http://freepages.health.rootsweb.com/~charmayn/similar.html
Symptom Management: http://freepages.health.rootsweb.com/~charmayn/symptom.html
General MSA Information: http://freepages.health.rootsweb.com/~charmayn/general.html
Featured Items of Interest: http://freepages.health.rootsweb.com/~charmayn/featured.html
Jim Todd Memorial Links: http://freepages.health.rootsweb.com/~charmayn/todd.html
With {{{Hugs}}}
Charmayne in the 'rockin' NW US

Ann,
If you keep getting it, someone with your email address in their address book
has it on their computer. Can you see who is sending it to you? If you can,
send them an email telling them they have a worm virus in their computer.
Take care, Bill and Charlotte
==================================================

Debbie,
We use the foam wedge for Al, I know it is not as good as the bed being
elevated but when we elevated the bed we both kept falling off the foot
of the bed.
I found them at a surgical supply store in Chattanooga, and if they have
them here I would guess they have them everywhere.
I think the cost was about $20.00 or less.
Ann from Soddy,TN

Vera,
It has much the same symptoms as MSA, but they stem from nerve damage rather
than brain damage. It could be caused by drug use. From what I read, it acts a
lot like MSA.
Take care, Bill and Charlotte

No I did not open it, I deleted it right away. But why am I still
getting it.
Ann from Soddy,TN

I had sent my PT daughter a portion of Jim's msg about 4 treatments and PT eval and asked her to comment ..

she originally sent back a response that it made sense to her because of blahtiblahtiblah ... (PT and insurance parameters)

I did not post it as it was blah... etc ..

she has now given me a reference from a PT Journal article last year ... which, as she said, is PT clinical ... and may not be clear to a layperson ..

I said we had some VERY astute folks on the board ... and I would make it available if anyone wanted to access it ...

it addresses Parkinson's movement work .... 'nuf said ...... let me know if you would like the link ...

cheers

sheila

Mary Ann,
There are some "non-permanent" things to raise the bed in the "Mail
Order Medical" catalog (www.momsup.com). They are called "bed and
chair raisers" and it looks like they'll do the trick! They are item
number SNRAA3302, and the price is $34.99 for a set of 4 (which, of
course is 2 more than you need....)
Carol & Rob

Can't you get one of those foam wedges and put it at the top of the bed? I
am sure others on the list will have suggestions. Good luck. Debbie

Hi all;
Last week the Dr. ordered the front of moms bed to be raised with wood
blocks. Today I find out the VA has a problem with making a bed immobile. In
case of a disaster and they would have to move the bed quickly, if the
patient is bed ridden. So does anybody have any ideas on how to keep a
mobile bed mobile yet raise the head up 8" or more? Something that isn't
permanent, we don't own the bed. But it has to be SAFE.
Mary Ann-

Mary;
My mother, Mable(SDS) also likes to push the envelope on safety. Trying to
get up by herself. Taking steps without the walker or lifting the walker
when she is walked. I really think she is trying to show us she CAN DO IT.
That WE are ALL WRONG. That she doesn't need help. She really want's to be
independent. She get's so proud of herself when she does something and
doesn't need help. You know I think you hit the nail on the head, describing
them as teenagers because teenagers have no fear either. I think it is the
brain misfiring, or the lack of dopamine. I don't think they get it, and we
have to be on the look out all the time.
Mary Ann-

My husband was diagnosed in 1996 with Alzheimer's. About a year the diagnosis
was changed to Parkinson's. In 1998 he saw Dr. Zwiebel at the Struther's
Center in Minneapolis. He was then diagnosed with MSA. Gary died in Jan.
2000. We had an autopsy done at Vanderbilt University and the report was
Dementia with Lewy bodies. So many of these progressive neurological diseases
have so many overlapping symptoms, it is extremely difficult to get a firm
diagnosis until autopsy. I am a co-facilitator for the MSA Support group in
Mpls. I believe that research is the only way we can find a way to prevent or
cure these horrible diseases. I also understand what all you caregivers are
going through. I kept my husband at home until the last year and I finally
put him in a nursing home as I was unable to care for him by myself. My heart
goes out to you all.
Now on the topic of acupuncture. I have personally met Marge's husband
and can attest to how well he is doing now. Colet has never claimed to cure,
but she can reverse the symptoms and control pain. We have an older female in
out support group. Her head was folded forward, (I think some of you call it
flex). She could not sit up straight, she had difficulty breathing and
swallowing. She has had six acupuncture treatments. She holds her head up
straight and her other problems have lessened. She no longer need three
pillows under her head, she now sleeps with one. She and her husband are very
pleased with the results.
I recently have had back problems. I go to the East West Clinic for
acupuncture. I had debilitating pain. Today I am almost pain free.
As of today there is no cure for MSA. Alternative Medicine (acupuncture)
is helping a lot of people. As I said, acupuncturists don't claim to cure.
They can lessen pain, and diminish the symptoms. I think it is a great thing.
If I had known about this when my husband was alive we certainly would have
tried.
The best to all of you. Ginny in MN

Hi Ann,
Warren is using both Florinef and ProAmatine for the b/p. He takes 4
Florinef a day and 3 ProAmatine he still has dizzy spells but not as
continuous as before. His b/p fluxuate from day to day being high one day
and dropping down the next.
Were the cranberry pills for dry skin and no sweating? Warren drinks
cranberry juice, not every day but quite often. Someone told us that it was
good for the kidneys, don't know for sure but he likes it and its fluid.
(ha,ha)
Take care Ann
Mary S.

Hi ladies,

I saw this and had to send it on to all you lady caregivers.

[INLINE]

Bet that's how heavy he feels at times too :o)

Take care Bill and Charlotte

Kat,

Here is a link to most of the speech information

http://freepages.health.rootsweb.com/~charmayn/symptom.html#speech

In the fall of last year my wife an I, angered that the community knew little about Young Onset Parkinson's let alone nothing about MSA took it upon ourselves to contact anyone who would hear us. We were on one of the major TV news stations in the fall. Had an article in our local weekly paper and when the large paper heard this they were interested. The followed us for almost 4 months. The actual article has about 10 pictures and takes up 3 pages.

Chralotte & Bill:

Yes I finally got my SSDI! I do not have a problem with orthostatic hypotension but have all the Parkinson's like symptoms. Therefore my neuro believes me to have striato nigral degeneration. I loose my balance, have a hard time walking due to both rigidity and pain, terrible tremors, muscle cramps, a little incontinence and speech and swallowing difficulties. The most discouraging thing to me is that every month I have to increase or change me meds!

Thanks

Tim
Be a good listener. Your ears will never get you in trouble.
Frank Tyger
http://www.plwp.org - People Living with Parkinson's
http://cpwg.tripod.com - Connecticut Parkinson's Working Group

Hi group! I hope this finds everyone in good spirits!
Does anyone know if nose bleeds are common to SDS? My Father is 73 and was
diagnosed a couple of years ago. He had his first nose bleed yesterday which
consisted of a few drops, but he doesn't ever recall having one before in his
life.
Also, I would greatly appreciate it if anyone has the voice exercises to post
it again. I have searched every where and cannot find the copy I printed out.
Thanks to everyone for all your help! Kat

This maybe a hoax going around about the boy getting sick from the
rat or mouse dropping in the store, but it still pays to clean the
tops of the cans. The new's here did a study of pop cans. Even with a
cover over them , they still get mold and other thing on them. One of
Freds doctor's told us not to drink from aluminum cans because he
feels the aluminum can come off and you take it into your body where
you may store it.
Always
Vera

Hi Everyone:
The Associated Press 2-21-01 show Johnny Cash released from the
hosptial after having pneumonia from a Autonomia Neuropathy illness.
Wonder what it is?
Always Vera

Elaine;
I've been following your dialogue about installing safety poles.
I just read Bill's suggestion of 1" galvanized pipe. I think that might be a
bit small. That is about the size of your toilet paper dispenser roll. Check
the size fit with your hand before getting the pipe. 1-1/2" or 1-1/4" may
make for less hand cramps.
Pete, my husband said you need a threaded pipe on both ends. Also 2
couplings