[ExI] HF health news
hal at finney.org
Sat Aug 22 19:42:08 UTC 2009
Hello friends -
I haven't posted on this list for a long time, but I still subscribe
and I have known some of you, virtually or in person, for many years. I
wanted to post this here as I think this is a group which will understand
some of what I am experiencing.
Because of the sensitivity of the topic, I am trying to manage the
order in which I tell the various groups I am involved with. Please
refrain from posting this information elsewhere, so that other friends
and associates don't learn the news too indirectly.
Two weeks ago I was unexpectedly diagnosed with Amyotrophic Lateral
Sclerosis. ALS, also called Lou Gehrig's disease in the U.S., is a
progressive neuromuscular disorder leading to inability to move, eat, or
breathe. At present there is no cure or even effective treatment. Average
survival times are 2-5 years after diagnosis.
My case is somewhat unusual in that my diagnosis came very quickly, while
my symptoms are mild. I first noticed hoarseness and slowing in my speech
about 4 months ago. Doctors also found some slight hand weakness. The
diagnosis is primarily based on electromyograms, studies which look at
the electrical characteristics of impulses in my muscle fibers. Mine show
signs of nerve deterioration and death, with progression typical of ALS.
Doctors cannot give me a specific prognosis. Due to the early diagnosis
and the apparent lack of significant change over the past 4 months,
I can hope for a longer than usual survival. OTOH, ALS which begins in
the mouth and throat area, what they call "bulbar" onset, often allows
for a shorter survival time, compared to limb onset.
The good news is that ALS generally has little or no impact on higher
brain functions. Although patients cannot move or speak, they can still
think clearly. This may not sound ideal, but it works very well for one
particular aspect of my situation: I have been signed up with Alcor for
cryonic suspension for almost 20 years now.
Cryonic suspension is of course a gamble at best, but on top of the
odds against it working under ideal conditions, we all face the risks
of death due to various events which would make suspension difficult or
impossible. Furthermore, many people today who do manage to "die in bed"
will have suffered significant mental deterioration by the time of death.
In my case, I now have a pretty clear picture of the likely course of
my final years. I can have a strong expectation of dying with my mental
facilities largely or even fully intact. Further, the time of my passing
will probably become clear somewhat in advance. All this should allow
me to experience the highest quality suspension that current technology
Of course I wish the news were better, and in fact all hope is not
lost that I could still have many years of good health ahead. There is
always the chance that the diagnosis is mistaken; the subtlety of my
symptoms alone would suggest that my case must lie somewhat in a gray
area. While the odds are not good, 10% of ALS patients survive longer
than 10 years. Stephen Hawking, the most famous living ALS patient,
has lived more than 40 years since his diagnosis (some experts think he
must not have ALS, just because he's lived so long; but if so, what he
has differs from ALS only in that it lets you live for a long time).
Despite these hopes, I need to face the reality that the likelihood is
that I have a relatively short time ahead. I am still coming to grips
with the situation. I hope the cryonics, or something else, works;
I would like to see the future, see all the many things that will
happen over the years ahead, perhaps even be reunited with my wife and
family. While I did not expect to benefit from my cryonics arrangements
for some decades yet, it is reassuring to know that there is a chance of
continued survival even given this terminal diagnosis. I think this will
be even more comforting as the time of my end approaches. I imagine that
closing my eyes for the final time will be easier, knowing that there is
a chance, even a small one, that I will be opening them again in a new,
and perhaps better, world.
I feel worst about leaving family and friends. Some of you know my
wife, Fran; it seems in many ways to be harder for her, the one who
will be left behind, than for me. Studies of ALS patients have found
that the quality of life is often worse for caregivers than the "PALS"
(People with ALS) themselves. Hopefully we can both find the strength
to help each other get through the challenging years ahead.
I'm sorry to be bringing bad news, but I can't say much about my cryonics
arrangements with most other people and groups I know. It's nice to have
a forum where the idea is not considered too bizarre. And perhaps this
will be a reminder to others who might be putting off signing up, that
we never know the course of the future and that getting some insurance
in advance can be a tremendous source of comfort when you need it.
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