Re: Travel and reflexes Etc.

[Guest guest]

,

Unfortunately, with MSA you do not always get a warning when reflexes " GO " .

My wife described her reaction to driving one time as " the road suddenly

closed in on me " and she drove off the road. Luckily there was a wide

shoulder and she did not have an accident, but it scared her enough that she

gave it up on her own. If you are lucky, you may get another chance, but if

she had no shoulder, she would have wrecked the car at a minimum. We have

had several patients who wrecked the car. As far as I know, no one yet has

killed anyone, but one did get badly hurt. Yes, loss of reflexes and even

consiousness is a problem with MSA.

Urinary and bowel problems are also common with MSA and you learn to cope -

search back posts on our website

http://groups.yahoo.com/group/shydrager/

by typing in a search word like " incontinence " .

Other problems you mention can also be associated with MSA, hang in there.

Take care, Bill Werre

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

pulalupu wrote:

> New to " groups " - so not sure how to respond to posts I receive in my

> email bundles...

>

> Anyway, there was one to Byron about traveling and reflex.

>

> I just wanted to say thanks. I had just been discussing this topic

> with an associate earlier tonight...

>

> Perhaps Byron is not where I am, but I fully understand what you were

> getting at with the reflexes. Or at least I think I do.

>

> I am meeting again with my internist Tuesday, and think we'll

> mutually agree that I should take myself off " driving priveleges " .

> It is just such a burden on my wife to drive me to all my client

> appointments. Of course, if I were ever to cause anyone else any

> pain... that would be terrible, and I know that would lay heavily on

> me for the rest of my life.

>

> In fact, with each warning sign I get - I keep thinking - what if...

> What if ... when I crossed that line, I hit a car coming at me?...

> What if... when I crossed the line on the shoulder I lost control of

> the car? Even... what if... when I was driving home - I wasn't

> able to find a landmark that was familiar?

>

> Of course, I hadn't even thought much about the " true reflex "

> actions. I have been tested at times to have absolutely zero

> reflexes - none at hands, feet, elbows, knees...

>

> And then... is there anyone else who is fine one minute - and

> totally exhausted the next? I mean, seems to come on without any

> warning, or pattern.

>

> Well, so much for the " one post " tonight. I told you guys I was full

> of questions though.

>

> All for tonight. Much planned for tomorrow (Friday)... Let's see

> how much of it my body ends up agreeing with :-)

>

> Thanks again for being there.

>

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

[Guest guest]

HI BILL.

THANKS FOR THE POST.

Unfortunately, with MSA you do not always get a warning when

reflexes " GO " .

WELL, THAT WAS TRUE FOR ME FRIDAY. YEP. I NEVER MADE MY

DESTINATION. NO ACCIDENT THOUGH - BUT PURELY BY THE GRACE OF GOD.

I POSTED ABOUT THAT TRIP IN ANOTHER RESPONSE, SO I WON'T GO INTO IT

HERE. OTHER THAN TO SAY, I ALREADY PRETTY WELL KNEW THE ANSWER

BEFORE I ASKED THE QUESTION, AND I GUESS FROM NOW ON, MY WIFE WILL BE

DOING THE TRANSPORTING.

WE ARE BUILDING A NETWORK OF SUPPORTS IN EACH AREA I WORK, WHICH WILL

MAKE IT EASIER ON HER AND OUR GIRLS. FOR EXAMPLE, THERE IS ONE

FAMILY IN ONE TOWN I WORK, WHO HAS OFFERED FOR THE GIRLS TO COME AND

GO SWIMMING THERE. GUESS THEY'LL BE GETTING A LOT OF POOL TIME, AS I

WORK IN THAT TOWN OFTEN.

My wife described her reaction to driving one time as " the road

suddenly closed in on me " and she drove off the road. Luckily there

was a wide shoulder and she did not have an accident, but it scared

her enough that she gave it up on her own.

WELL, THAT IS WHERE I FIND MYSELF - AGAIN. YES, AGAIN. I'VE BEEN

THERE BEFORE. 7 MONTHS AGO - WHEN THIS STUFF WAS MORE 'NEW' TO ME.

BACK THEN, I GAVE UP DRIVING. NOW, I GUESS I FIGURED I WAS 'USED TO

IT' ENOUGH. WRONG. HAD A PARTICULARLY BAD DAY FRIDAY - AND REALIZED

THAT INDEED I SHOULD NOT BE DRIVING MYSELF AROUND. ESPECIALLY NOT AS

MY WORK TAKES ME 50 MILES FROM HOME DAILY.

If you are lucky,

WELL, I PREFER TO CALL MYSELF 'BLESSED' :-)

you may get another chance, YEP. I GOT ONE!

but if she had no shoulder, she would have wrecked the car at a

minimum. WELL, AND THIS PRESENTS ANOTHER PROBLEM... BECAUSE I HAD

KINDA FIGURED AFTER FRIDAY THAT I WOULD NO LONGER DRIVE MYSELF. BUT,

I ALSO FIGURED THAT ON A 'GOOD DAY' I COULD DRIVE AS LONG AS DONNALEE

WAS WITH ME. PERHAPS THAT IS NOT AS VALID AN HYPOTHESIS AS I HAD

THOUGHT :-)

MAYBE I (WE) NEED TO RETHINK THAT ONE.

We have had several patients who wrecked the car. As far as I know,

no one yet has killed anyone, but one did get badly hurt. Yes, loss

of reflexes and even consiousness is a problem with MSA.

WELL, CHALK UP ANOTHER COMMONALITY.

Urinary and bowel problems are also common with MSA

AND CHALK UP TWO MORE.

and you learn to cope - YEP. STORY OF MY LIFE. REALLY. MAIN PROBLEM

FOR ME NOW APPEARS TO BE - THAT I HAVE LEARNED TO COPE SO WELL - THAT

I TEND TO THINK OF MY PROBLEMS AS NO LONGER BEING PROBLEMS. I LIE TO

OTHERS SO MUCH ABOUT HOW I FEEL - THAT I TEND TO BELIEVE MYSELF - AND

FAIL TO TAKE INTO ACCOUNT MY OWN LIMITATIONS. YEP - DO THAT ALL THE

TIME - NOT JUST WITH REGARD TO DRIVING.

search back posts on our website

http://groups.yahoo.com/group/shydrager/

by typing in a search word like " incontinence " . I'LL TRY THAT. DOES

IT ALSO WORK FOR CONSTIPATION? I THINK I'M ABOUT OUT OF 'NATURAL'

REMEDIES. I'M EATING BOXES OF RAISINS AND PRUNES DAILY - AND I'M

EVEN FINDING 'REGULARITY' AN IRREGULARITY WITH THAT MUCH INGESTED.

REGARDING THE URINARY THING... AS I UNDERSTAND IT, I MAY BE IN A BIT

OF TROUBLE NOW - AS I JUST FELT THE URGENCY - BUT HARDLY ANYTHING

CAME OUT. IT'S BEEN THE OPPOSITE - WHERE I WAS GOING EXCESSIVELY -

AND NOW ALL OF THE SUDDEN (THIS HOUR) - I HAVE THE URGENCY - WITH

NOTHING. IN ALL ASPECTS, IT REALLY DOES SEEM AS THOUGH I HAVE TAKEN

SOME GIANT LEAPS BACKWARD IN THE PAST 36 HOURS.

AS I SAID, AT LEAST I'M SEEING MY INTERNIST TUESDAY.

Other problems you mention can also be associated with MSA, hang in

there.

THANKS. WHAT OTHER CHOICE DO I HAVE? :-)

I'M NO QUITTER. AND I'M BOUND AND DETERMINED TO BREAK

EVERY 'EXPECTANCY' IN THE BOOK. (I'VE ALREADY BLOWN MY INTERNIST

AWAY BY SURVIVING WHEN SHE THOUGHT FOR SURE I WAS A GONE-ER. WITH MY

BLOOD AND WEIGHT LOSS AND ALL - SHE THOUGHT FOR SURE I WAS GONNA

CATCH PNEUMONIA OR SOMETHING - AND BE DONE FOR. WELL - SO FAR - EVEN

THOUGH THERE IS NO EXPLANATION FOR THAT EITHER - AS MY IMMUNE SYSTEM

IS SUPPOSE TO BE SHOT AS WELL - I KEEP RIGHT ON TRUCKIN. I PREFER TO

CONSIDER IT A BLESSING FROM GOD. HE HAS GIVEN ME MANY INEXPLICABLE

BLESSINGS - TO HELP ME SURVIVE THIS - OR - PERHAPS - HE HAS GIVEN ME

THESE INEXPLICABLE BLESSINGS TO FURTHER CONFOUND THE DOCS? :-)

THANKS FOR THE WELCOME BILL, AND THE FIRM WORDS OF CONCERN AND

ENCOURAGEMENT.

WILL I MEET YOU IN DENVER?

PAUL AKA PULA