Fw: Shy-Drager/Multiple System Atrophy

[Guest guest]

Will someone please help me on this? I've got to leave town and don't have

time to answer it properly!

Thanks, Don Summers

Shy-Drager/Multiple System Atrophy

> My mother was diagnosed today with Shy-Drager Syndrome. She was

> previously diagnosed(last year) with Parkinson's.

>

> In the past 2 months, there have been numerous incidents of her passing

> out while walking, the most recent causing a facture in her pelvis.

>

> The doctor was very negative about her chances for survival and

> suggested a nursing home. My mother believes she would rather be at

> home with her family.

>

> Questions:

>

> Is this disease fatal?

> Could the Parkinson's be the real problem and it is a mis-diagnosis?

> If we went to a specialists, what would that be?

>

> This is a mystery to me and I would appreciate as much information as I

> can receive.

>

> Thanks in advance

>

>

>

>

[Guest guest]

Don Summers wrote:

>

> Will someone please help me on this? I've got to leave town and don't have

> time to answer it properly!

> Thanks, Don Summers

> Shy-Drager/Multiple System Atrophy

>

> > My mother was diagnosed today with Shy-Drager Syndrome. She was

> > previously diagnosed(last year) with Parkinson's.

> >

LAST YEAR SHE HAD PD AND THIS YEAR TODAY SHE HAS SHY DRAGER?? AND NOW

THE DOC SAYS HANG IT UP?? MAYBE HE SHOULD MEET SOME OF US. EYE OPENER !

SORRY. BACK TO UR MOM.

WHAT IS THE REASONING THAT UR MOM HAS SHY DRAGER?? U CAN HAVE

PARKINSONISM AND ORTHOSTATIC HYPOTENSION AND NOT HAVE SHY DRAGER.

HOWEVER, IMPORTANT THING IS

DOES UR MOM TAKE ANY SINEMET???FLORINEFF??PROAMATINE??? FLORINEFF AND

PROAMATINE HELP RAISE BLOOD PRESSURE. FLUIDS, EXTRA SALT?? IS SHE

DIABETIC THOUGH?

> > In the past 2 months, there have been numerous incidents of her passing

> > out while walking, the most recent causing a facture in her pelvis.

BUY HER A WHEELCHAIR WITH PADDED LEG LIFTS.

AS STATED ABOVE -IS SHE ON ANY MEDS??PROAMANTINE(SP?) AND FLORINEFF HELP

ME FROM PASSING OUT. COMPRESSION HOSE OF 20-30 OR 30-40 (TOO HARD TO PUT

ON) HELP MY FEET FROM CHANGING COLORS AND BLOOD POOLING. SHE DRINK

FLUIDS??? HOW MUCH?? SALT??

> >

> > The doctor was very negative about her chances for survival and

> > suggested a nursing home. My mother believes she would rather be at

> > home with her family.

> >CHANCES FOR SURVIVAL?

HONESTLY I WOULD WANT TO BE AT HOME TOO. BUT THERE ARE OTHER THINGS TO

BE CONSIDERED. FAMILY SCHEDULES WITH WILLINGNESS TO TAKE VACATION LEAVE

AND FAMILY LEAVE. HIRE AIDE AND A NURSE AND THERAPY (?)

THIS IS WHAT WE HAVE

HOME HEALTH AIDE, TRANSPORTATION AND BACK UP TRANSPORTATION, EMS IF

EMERGENCY. I WAS GOING INTO THE ER MONTHLY. NOT GOOD. LOOK AT CARE?

2 HEALTH AIDE 5 FULL DAYS. THEY NEED A DAY OFF BESIDES THE WEEKEND FOR

THEIR OWN CARE AND THEIR CHILDREN'S NEEDS. MANY WORK THE WEEKENDS SO

MONDAY OR FRIDAY THEY TEND TO CALL OFF IF SCHEDULED AND THEY WORKED THE

WEEKEND. THEY ARE TIRED. HUSBAND AND TEENAGE SON IN THE BEGINNING . NOW

HUSBAND BECAUSE WE FINALLY FIGURE OUT HOW THE HEALTH CARE SYSTEM RUNS

AND DOESN'T RUN ,WHAT CARE I NEED, WHAT TIME HE NEEDS, THE TIMES THE

AIDES WORK. KIDS AND THE DOCS SEEM TO BE THE MOST PATIENT OUT OF ALL.

THEY ASK ME HOW I DO IT. AND I WONDER HOW THE WORLD DO THEY. ANYWAY...

WHEN IT COMES TIME FOR NULL SURVIVAL AND I WILL KNOW DEEP DOWN INSIDE. I

WANT TO BE AT HOME AND AT PEACE. IF I THOUGHT I HAD A SHOOT I GO FOR IT

AND LUCKILY I HAVE THE DOCS AND HUSBAND AND SON AND MY BEST FRIEND IN

BOSTON TO CORRECT ME WHEN I SCREW UP. UR MOM AND U ARE ANOTHER FAMILY

AND U 2 HAVE TO DECIDE WITH HELP WHAT IS BEST FOR ALL OF U.

COSTS*****HOME CARE IS CHEAPER AND DESIRABLE. HOWEVER, THE PERSON HAS TO

BE ABLE TO TRANSFER CORRECTLY.

MEDICARE I THINK COVERS GRAB BARS, AND COMMODES, WHEELCHAIR, SOME LIFTS,

WHEN I GOT MINE I WAS ON REGULAR INSURANCE AND IT WAS 6 YEARS AGO.

SOMEONE FROM THIS LIST WILL KNOW ABOUT THAT PART OF DURABLE MEDICAL

EQUIPMENT.

HOPE AND MEDS IN BOTH MEDICAL AND THE PATIENTS EYES FAMILY HELPS

SIGNIFICANTLY AR IMPORTANT. GET COUNSELING AS TO HOW UR MOM FEELS, U AS

A FAMILY FEEL, THE DOCS RATIONAL.

MY DOCS FIRST QUESTION TO ME WAS DO I HAVE CLERGY OR SOMEONE OF THAT

NATURE TO TALK TO. HOW DO I VIEW HIGHER BEING. MANY QUESTIONS WERE

ASKED. WHAT WAS GOING TO BE MY PART IN THE CARE PLAN. IF U CHANGE OR

SEEK ANOTHER OPINION DOESN'T MEAN U DON'T HAVE CONFIDENCE IN THAT ONE

DOC. THAT CHANGE IS MORE TO SATISFY URSELF AS THE PATIENT.

PRIORITY IS TO PROBABLY GET UR MOM'S PELVIS HEALED AND WHAT IS CAUSES

THE PASSING OUT?? DID SHE HAVE A MRI OR SCAN TO SEE IF SOMETHING ELSE

CAUSED THE FALL AND PASSING OUT.

AS FOR DOC TO SEE--- MAYBE A REHABILITATION MEDICAL DOCTOR AND

ORTHOPEDIC SPECIALIST NEURO CONSULT TIED TO A INTERNIST??FIND AN

INTERNIST WHO DOESN'T SEND U TO THE NEURO EVERYTIME U GET SICK. THERE

MUST BE A LIMIT TO AVERAGE LENGTH OF TIME BEFORE A PELVIS HEALS BASED ON

CHRONIC ILLNESS AGE, SEVERITY, ECT.

> > Questions:

> >

> > Is this disease fatal?

> > Could the Parkinson's be the real problem and it is a mis-diagnosis?

DOCTORS ARE HUMAN. A GOOD PHYSICIAN AND I GUESS A GOOD PATIENT IS ONE

WHO DOESN'T GET BEND OUT OF SHAPE IF THE PATIENT IF ANOTHER OPINION OR

CHANGES IS DONE. THOSE WORDS ARE HARD TO FOLLOW. THAT IS WHY WE ARE ALL

HUMAN. I AM SURE DOCS SEND PATIENTS TO ANOTHER DOC AT TIMES IF THEY

FEEL THE NEED TOO.

I READ AND HEARD THAT SINEMET IS USUALLY TRIED FIRST FOR DEBILITATING

PARKINSON'S SYMPTOMS. SOME MSA PATIENTS ARE ON SINEMET. SINEMET IS GIVEN

FOR OTHER ILLNESSES TOO. HOW MUCH SINEMET WAS UR MOM ON? WHAT SYMPTOMS

DOES UR MOM HAVE?

IDIOPATHIC PARKINSONS DISEASE LOOKS DIFFERENT THAN MSA AND ATYPICAL

PARKISONISM. A CONCRETE DIAGNOSIS WOULD BE OPTIMUM FOR ANY ILLNESS.

HOWEVER, A FINE LINE BETWEEN TO BE TREATED AT THE DOWN TIMES IS

IMPORTANT. FOR EXAMPLE IF I HAD AN INFECTION, WE KNOW DUE TO MY SYMPTOMS

AND CLOSELY APPROX. DISEASES DIAGNOSIS THAT CERTAIN MEDS WE STEER AWAY

FROM AND WE TRY WHAT WORKED IN THE PAST IF IT IS RATIONAL, AND NEW

OPTIONS.- ANTIBIOTICS.,ECT.

FRUSTRATIONS APPEAR TO THE PATIENT AND THE DOC. IT SEEMS BOTH WANT

DIAGNOSIS AND TREATMENT. WITH PD THAT IS TOUGH. WAITING . HOWEVER, DO

WHAT YA CAN AND HOPE NEW TREATMENT AND OLD TREATMENT MASKS THE SYMPTOMS

SO THEY ARE BEARABLE.

SAFETY,MOVEMENT, AND PREVENTION OF INFECTION ARE TARGETS. HAPPINESS IS

A MAJOR TARGET:)

IT IS HARD WHEN THE MAJORITY OF UR WAKING HOURS IS REHAB AND GOING TO

THE DOCS.

> > If we went to a specialists, what would that be?

> >REHAB PHYSICIAN FOR MOVEMENT, PAIN , INTERNIST - GATE KEEPER ( HARD TO FIND

ONE THAT DOESNT SEND U TO THE NEURO WHEN U GET A COLD) MOVEMENT DISORDER

SPECIALIST.

ASK THE DOCS WHICH SPECIALTY DOCS THEY WORK WITH.

CARDIOLOGIST- AUTONOMIC WHO WORKS WITH THE NEURO IS GREAT FOR ORTHO

STATIC AND MOVEMENT DISORDERS.

IMPORTANT DO AN ACTIVITY EVERY WEEK THAT DOESN'T INVOLVE MEDICAL

PEOPLE.DOESN'T HAVE TO BE ALL DAY OR FANCY.

> > This is a mystery to me and I would appreciate as much information as I

> > can receive.

> >

> > Thanks in advance

> >

> >

> >

> >

>

>