see below please. i will cap the reponses . i hope u have some nice
moments  this day.



> ----- Original Message -----
> From: "stewartbros" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Thursday, August 25, 2005 7:05 AM
> Subject: Advice needed....and perhaps a little venting
>
>
>> Good Morning - I don't know where to begin. Mom was diagnosed several
>> years ago with Parkinson's. Since then she's had her 104 year old
>> Mother-in-Law living with her and Dad (we've been helping as much as we
>> can, 2 potty runs a day/7 days a week since Grandma won't walk
>> anymore and
>> putting her to bed). They can't find anyone to come in and do home care
>> for Grandma. Mom has cracked 2 vertebrae in her back and they're talking
>> about operating, Dad's back needs an operation, Dad's sister has
>> Leukemia
>> and he's the only perfect match (bone marrow and stem cells) (but
>> that's a
>> whole NIH mess), I've been dealing with (and beating) my own cancer deal
>> and my sister is pretty much carrying us all around on her shoulders.
>> Yesterday the Dr. decided that the reason Mom can't walk without a
>> walker
>> anymore isn't because of her back, but because her Parkinson's has
>> progressed to give her a shuffle.
>

SHE NEEDS PHYSICAL THERAPY. THE WILL COME TO UR HOME SO THERE WILL NOT
BE ANY TRANSPORTATION ISSUES OR MORE STRESS ON ANYONE.
SHE HAS TO SIT WITH LUMBAR/LOWER BACK SUPPORT.  POSSIBLY WHEN SHE SLEEPS
ALSO. HAVE A PHYSICAL THERAPIST LOOK AT HER.   THEY HAVE AN EDUCATION IN
THIS AREA. THE DOC WILL WRITE A PRESCRIPT. TAKE HER THERE. IF NOONE CAN
HAVE THEM COME TO UR HOUSE.  IF THIS CAN NOT BE DONE, THEN IN-HOUSE
REHAB FOR 10 DAYS CAN BE ARRANGED. SHE WILL GET WORSE IF HER POSTURE
ISN'T TAKEN CARE OF.
SHE IS PROBABLY HUNCHED OVER AND DOESN'T FEEL LIKE SHE IS. HUNCHING OVER
FEELS BETTER. IT IS HARD TO STAND AND SIT UP STRAIGHT.  MAKE SURE SHE
HAS BACK AND HEAD SUPPORT.
IF SHE USES A WALKER. PLEASE MAKE SURE THE PT  ADJUSTS THE HEIGHT. IF I
SEE ONE MORE OLD PERSON HUNCHING OVER A WALKER THAT IS TOO SHORT FOR
THEM, I WILL EXPLODE:)  IT MAY FEEL BETTER AT THE TIME, BUT IT IS MAKING
THEIR SPINE WORSE. IT WILL COLLAPSE AND THEIR SCIATIC NERVE WILL BE
PINCH. THAT HURTS LIKE THE DICKENS. THEY WILL NOT BE ABLE TO SIT, STAND,
OR POSSIBLY CONTROL SOME BODILY FUNCTIONS.

GET HER A WHEELCHAIR THAT IS MADE FOR HER. THE ONES AT THE AIRPORT OR
PUBLIC PLACES ARE TOO UNCOMFORTABLE.  MEDICARE WILL PAY FOR ONE. U PAY
FOR A GEL SEAT WITH A CUT OUT TAILBONE AREA TO PREVENT SORES/ULCERS.
LUMBAR SUPPORT MAY BE NEEDED.  TOTAL ABOUT 300- 400 BUCKS. SHE WILL BE
HAPPIER AND U THEN WILL BE :)  IF SHE DOESN'T HAVE 400. BUCKS THEN SHE
SHOULD QUALIFY FOR MEDICAID ASSISTANCE. THEY HAVE DIFFERENT PROGRAMS
FROM FROM THE ONES THAT HEALTHIER PEOPLE ARE ON.

>> I've tried to get her to join a support
>> group as things have gotten worse and more complicated and her temper
>> has
>> gotten shorter and she's gotten more stressed.
>
STRESS CAN AFFECT THE MIND. ANYONE'S MIND.  I LIKE SOME TIME TO MYSELF
TOO.  I  GET TIRED OF PEOPLE TELLING ME ALL DAY THEIR OPINIONS WHEN I
DIDN'T ASK FOR THEM.  ONLY MY DOCTORS CAN DO THAT. THEY WENT TO MEDICAL
SCHOOL.  I DIDN'T SAY THEY WERE RIGHT ALL THE TIME.

>> We hardly recognize her as
>> the mother we've always had. Her mind is starting to slip and she's not
>> remembering things the way she always did. She won't join a group, says
>> she doesn't want to talk to a bunch of strangers. I've tried to explain
>> how it works and how much it's helped me, but she can't hear me. I guess
>> that's where the advice part comes in, how do you convince someone that
>> they'll be happier and feel better if they'd just join a group.
>
THE INDIVIDUAL PERSON HAS TO ACCEPT WHATEVER, IF THEY DON'T THEN U ARE
BEATING UR HEAD AGAINST A WALL.  TALK TO A COUNSELOR AND THEY WILL HELP
U HANDLE THIS.

>> And also,
>> does anyone know how I could find one in the Baltimore/DC/Maryland area.
>> Maybe if I started going I could get her to come along. Everyone is so
>> stressed at this point we're all really just feeling weary from the
>> struggle that is everyday.
>
PERHAPS THE PUBLIC LIBRARY CAN HELP U? ESPECIALLY IN DC.
I FEEL SOMEWHAT THE SAME WAY. HOWEVER, I HAVE HAVE CARE FOR MANY YEARS
NOW. MOST PATIENTS AND THEIR FAMILIES CAN'T AGREE WHEN AND HOW MUCH CARE
IS NEEDED FOR EVERYONE.  THE SOONER EVERYONE CAN ACCEPT THAT THE HAPPIER
EVERYONE WILL BE.  I ACCEPTED MY CARE A LONG TIME AGO. MY SPOUSE CAN NOT
ACCEPT ME HAVING CARE. HE SEES IT AS ME PUSHING HIM AWAY.  HE TOLD ME AT
THE BEGINNING THAT HE LOVE HIS RESEARCH, SO I HAD TO ACCEPT SOMEONE ELSE
DOING MOST OF THE 'WORK' CARING FOR ME. HE WAS VERY YOUNG AS I WAS AND
STILL AM :)  EVERYONE GOT ME THE CARE I NEEDED. IT WAS VERY HARD TO
ACCEPT.  I HAD TO UNDERSTAND THAT MY DOCTORS DID THAT BECAUSE THEY CARED
ABOUT ME AS A PATIENT AND MY SPOUSE AND CHILD.   I LIVE AT HOME. IT IS
VERY POSSIBLE.

AS FOR SUPPORT GROUPS, SUPPORT GROUPS MUST HAVE SOLUTIONS TO THE
PROBLEMS THAT THE PERSON FACES OTHERWISE PEOPLE STOP GOING   IE.
CONCRETE SOLUTIONS TO HOW TO ADAPT OR FIX THE PROBLEM.

>> I just want to make things better for everyone
>> and just being there isn't enough anymore.
>

YOU CAN NOT  SOLELY MAKE THINGS BETTER FOR EVERYONE. EVERYONE HAS TO
COOPERATE.  IT IS NO ONES FAULT. WHATEVER 'IT' IS.  THIS CONCEPTS IS ONE
OF HARDEST THINGS TO  DEAL WITH.



>> Any thoughts about dealing with
>> any of this would be
>> ----------------------------------------------------------------------
>> To sign-off Parkinsn send a message to:
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>> In the body of the message put: signoff parkinsn
>> greatly appreciated. Thanks - Martha
>
>
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