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My wife
has both CIDP and
PM, and
possibly
IBM, all
diagnosed
by Dr
Engle.
She was
several
years
getting
the
referral
to Dr
Engle
with
local
doctors
doing
the
"patting
the
hand"
routine,
so by
then she
was well
into it
and had
fallen a
few
times
from
quadricep
weakness.
Dr Engle
put her
on IVIG
which
brought
her back
about
50%.
Now,
after a
couple
years at
50% she
has been
slipping
downward
and
walks
with a
cane and
sometimes
walker.
She is
VERY
susceptible
to falls
with
right
knee
bending
and no
strength
to stop
it,
which
brings
me up to
my
question.

Dr.
Engle
recommended
her
getting
a knee
brace
that has
a
tension
against
bending
and kind
of
assists
the leg
extension.
It makes
perfect
sense
and he
has
helped patients
with
some
success.
The idea
is to
make the
knee
"think"
about
starting
to bend
and
avoid
the
whole
event.
He said
the
store
there at
Good
Samaritan
was out
so we
have
looked
at them
and went
to a
medical
equipment
provider
but
everything
we saw
has no
resistance
to
bending.
Such a
device
would
probably
be
useful
to
others
with
quadriceps
issues
so I'm
wondering
if
anybody
has
found
one that
works.
I may be
wrong in
my few
short
visits
here(cidpusa.org),
but I
perceive
the
focus of
the site
is
toward
the
disease
itself
and less
on tips
(and
devices)
to live
with
it. How
do
people
get
through
their
day, I
mean
open
jars,
lift the
milk
jug,
turn
around
without
falling,
get in
and out
of the
bath,
wash
their
hair,
etc.
Now that
my wife
has lost
most
strength
in her
hands
it's not
just
standing
up
anymore.
She has
a
terrific
attitude
and has
invented
ways to
get by,
but we
all need
a tip
now and
then.
Here's a
few
things
she has
done:
Apply
for a
disability
plate so
you can
park
closer
to
shops.

Use a
walker
so you
can
support
some
weight
on the
walker
and leg
muscles
get some
relief.

If
you
cannot
use a
walker
then
many
stores
offer
motorized
carts
for
disabled
shoppers.
You
can find
them in
Target
and
Wal-Mart.
* Put a
2" seat
cushion
in her
car to
help
getting
out (A
patio
chair
cushion
from
Target).
For
most
people
with
adequate
strength
and
function,
it's
much
easier
to get
up from
the
chair
illustrated
here
or an
easy
chair,
because
the body
movements
needed
to do so
are much
easier
on the
joints
and
muscles
the arm
rests
help you
get out
of the
chair
easily.
Keep a
bigger
cushion
so you
can get
up
easily.
Place
cushions
on
chairs
and low
seats so
you can
get
around
easily.
You
can also
use a
extra
cushion
on your
chair or
sofa and
it will
be
easier
to get
up
How to
open
cans
use?
*
Electric
can
opener,
and a bottle
opener.
How
to open
Bottles?

Use the
handy
bottle
opener.

How to
wash
hair?
* Wash
hair in
shower
as
one cannot
easily
get up
and down
over the
tub.
How to
shop?
*
Accepted
she
cannot
carry
heavy
things
like the
Costco
box of
2-1gal
milk
containers.
So she
takes
out 1
bottle,
gets the
box with
1 in it
and puts
the
bottle
back. I
told her
to look
around
for a
cute guy
and ask
for help
(Cute
guys
love to
help).
She has
taken me
up on
it!
* Stores
the
heavy
stuff
where
she can
get to
it
easily,
buys 2
little
ones
instead
of 1
big.
Help in
Showers
?
* Change
the
shower
and bath
knobs to
those
with big
handles
to get
an
easier
grip.
Do the
same
with all
interior
doors
getting.

The
shower
handle
is very
helpful

* Visite
an
arthritis
gadget
site
and they
have
lots of
stuff to
help
weak
hands,
etc.
Bath
chair so
you do
not slip
and fall

Opening
Doors
Use
Lever
Handles
to open
doors.
Driving
help?
* Use
the
steering
ball in
California
this is
illegal
but MVA
can ok
this
with
doctors
orders.
For
exercise?
Use
these
bicycle
pedals
for
exercise
.

Walking
in the
mall is
another
option
for
those
who can
still
walk, as
the
surfaces
are
even,
there is
mall
security
from
weather
and
traffic.
Help is
available
if you
fall.
This is
better
then
home.

Earle
Thanks
to earl
for the
excellent
tips |