Some ALS
patients chose to be placed on a ventilator to help them breathe. Their lives
are extended past the average 3- 5 years. Though doing so may be costly and burdensome on some families. One lady has been on a ventilator for twelve years
and another man for fourteen years. They both have the best attitudes and are
leading a good life despite of all the negative aspects of the disease.
Some of the
people I am following via Twitter, facebook and on their blogs use special
devices to help them communicate their needs. One lady still has her voice and
uses voice activated software to speak to the computer, and it types out the
words. A lot of PALS can no longer use their hands because they are paralyzed.
One man pecks with his middle fingers on both hands. Several PALS use a
computer that tracks their eye gaze which in turn types out what they want
written.
I have also
joined the ALS Forum in which I post two chapters of this book each week. I
wanted to be able to help people now. This is what I thought I should do. The
threads I post on go under the Past Caregivers (CALS) section. CALS (caregivers
of PALS) look under this section for
support and often have a lot of questions because of the PAL they are taking
care of. I get excited when a CAL replies a nice comment to my thread. It is
nice to “see” I may be helping someone now instead of waiting till the book was
published!
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