my life

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					我的生活
My name is Ein-Shei Chang. I was diagnosed
   with ALS in 1995. I have lived for 14 years with
   this disease and though my life does have
   many frustrations, it has been happy and full.
In these 14 years, I have seen my oldest son get
   married to give me a grandson. My daughter
   has finished a Master’s degree and is teaching
   in Japan. My youngest son has just started law
   school at the University of Michigan.
And I have travelled to over 15 countries and
   happily boss my family around on a regular
   basis.
I have been asked here today to share with you
how I spend my time as an ALS patient.

In addition to my daily routines, I would like to
share with you some things that have made my
life easier over the past few years.

If you have any questions, please feel free to ask
them at the end of the presentation.
ALS patients are very special.
  We retain all of our mental faculties.

As a result, it is very important to remember, that we
  are not JUST ALS patients. You cannot just take
  care of our physical well-being – our mental well-
  being is just as important.

An ALS patient’s mind is NOT impaired. We think
  clearly. You must remember that in caring for us,
  you are not caring for a thing, but a human being.
I have frequently wondered why it is that some ALS
patients, whose bodies are in far better condition than
mine, choose to give up their lives.

I believe that perhaps they feel there is nothing left to
live for. They have a clear mind, trapped in a body
they are unable to control. They struggle daily, trying
to communicate with their caretakers, and the
frustration is overwhelming.

  What was once easy, is now an entire day’s work.
   ALS is an emotionally exhausting condition.
Caretakers, in order to help your patient/loved
   one to combat depression, I urge you:
1) to preserve and protect the patient’s dignity.
   Cover their private parts in the shower, close
   the door when they are using the restroom.
   Even if it is only at home with family; and
2) to treat your patients as contributing members
   of society. We do not have to be a burden on
   society. We can still be active members of our
   family and social circles. But only if we have
   your support. Allow us time to refocus on a
   new purpose in life.
I have found that it is
important to make sure
you like your wheelchair.
Add things to it that
make it yours.

It is the tool that will
enable you to get to all
the places you want to go
to do the things you want
to do.
   A headboard
   A pad for my
    back
   A seat cushion
   A bag to hold
    things
   A pillow to rest
    my head on
   An umbrella to
    block out the sun
I spend most of my
day sitting. So it is
important to have a
nicely padded seat.
My daughter-in-law
purchased this one at
the store for about
twenty US dollars. It is
thick and soft and it
keeps my bottom from
getting too numb.
I find that a simple
two-handled bag
hangs nicely on the
back of my chair. It
allows me to carry
things like water
bottles and special
eating utensils with
me wherever I go.
My wheelchair came with a
pillow. However, as my
neck became progressively
weaker, I found that it was
necessary to create
something that could help
hold my head up. We
sewed an empty tissue box
to my pillow and put a
tissue box cover on it. It
also is good for storage!
Also, it is nice when I
go out to walk around,
to use an umbrella to
block the sun from my
face. But we’ve found
that it is hard to hold
an umbrella AND push
my wheelchair. So, we
added an umbrella to
my wheelchair.
Notice that there are twisting screws that
allow the umbrella to fold down when it is not
in use.
ALS patients are very
sensitive to changes in
temperature. Appropriate
room temperatures are
critical for the comfort of
the patient. The air
conditioner in my room is a
key piece of equipment,
along with the space heater
I use when I take a shower.
ALS patients are also subject to
the pain of being unable to
move to relieve the pressure on
our bodies that results from
gravity. What I have found to
be one of the most amazing
inventions of this past century
is “memory foam.” I used to be
uncomfortable whenever I
would go to bed. When my
husband bought me a memory
foam mattress, I could finally
sleep at night.
                         I also use memory foam as
                         a pillow and as a buffer
                         between my knees when I
                         sleep. It makes a huge
                         difference.




I never travel without
    my memory foam.
I am also very
lucky to have two
wonderful
caretakers who
allow me to get
through the many
events I have
scheduled in my
day.
   My Caretakers’ Schedule
                    Lily                Maricel
Week One     Caretaking during        Housework
                  the day            during the day
                                   and helps at night.
Week Two        Housework          Caretaking during
               during the day           the day
             and helps at night.


It is important to rotate the workload. Taking care
of me is hard work. Making sure my caretakers can
handle the work is very important.
Communication is the key to increasing the
  standards of living for an ALS patient.
I can also use a Chinese clear board or my computer
    to communicate with the people around me.
          My Daily Schedule
05:30   Wake up                  16:30   Nap
        Exercise                 17:30   Shower
        Work on the Computer &   18:30   Eat Dinner
        Wash up
06:30   Eat Breakfast                    Exercise
        Exercise                 20:30   Watch TV with my Mom
        Work on the Computer     22:00   Return to my room
12:30   Eat Lunch                        Work on the Computer
        Exercise                         Wash up
        Work on the Computer     23:00   Go to bed

As communication is difficult for all ALS patients, it is
important to make sure we establish a consistent routine to
enable our caretakers to help us the best they can.
As ALS patients, we
spend a great deal of
time sitting. Sitting too
long makes my bottom
hurt. So, after every
meal, my caretakers
will stand me up and
pat down my bottom,
legs and back to help
my circulation.
I chat with my kids, and see
my grandson in California.
                     I make sure I
                     get all my
                     food onto a
                     plate first.




Otherwise,
everyone else will
eat everything.
Standing is
crucial to your
long term
health. It helps
to strengthen
bones and
prevent serious
injury in the
case of a fall.
Stand as much
as you can.
General movement
improves circulation and
keeps energy levels up.
Just because we’re
handicapped, does
not mean we do not
like to go out. I have
a van that will allow
my wheelchair to be
loaded with very
little effort
Since my neck is pretty
weak, when I am in the
car I use a head strap to
keep my head from
moving around too
much when the car
brakes or hits bumps in
the road. It is a simple
length of velcro that
wraps around my
headrest and my
forehead.
We go…




         Shopping
Or…




      To family events
Or…




      To eat with friends
Or…




      Sightseeing
   It doesn’t really matter
        what you do.
It only matters that you do

   SOMETHING.
It’s back to home, dinner, my computer and
     Taiwanese Soap Operas with Mom.
我兩個月前在台灣自由時報,看到一則新聞。 英國
天空電視台,播放一位運動神經原疾病患者,英國
的美籍教授, 在瑞士尊嚴安樂死公司幫忙下,安詳
死亡的影片。 他說「他如果選擇活下去, 他就是選
擇痛苦。」 他還說「他怕癱瘓無法言語時, 沒有人
知道他在受折磨。 」他的想法非常真實 ,多數病友
都有此顧慮 。由此我們知道, ALS 病患的看護,
只照顧他的身體是不夠的, 心情維護也很重要。所
以想要真正提高居家照護的品質, 研發一套漸凍人
的語言是必要的,像聾啞人的手語, 盲人的點字,
能快速精準的與人溝通。 免除 ALS 病患,怕不被
瞭解的深層恐懼。
Any Questions?

				
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posted:12/2/2009
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