[ExI] HF health news
natasha at natasha.cc
Sun Aug 23 05:35:33 UTC 2009
Thank you for including us in your current health situation. It is
fortunate that you caught this early and even though your outlook is both
pragmatic and humble, there still is hope that there could be a means to
forestall the effects of ALS.
We are and always will be here for you.
Warmest thoughts and love,
Nlogo1.tif Natasha Vita-More
From: extropy-chat-bounces at lists.extropy.org
[mailto:extropy-chat-bounces at lists.extropy.org] On Behalf Of "Hal Finney"
Sent: Saturday, August 22, 2009 2:42 PM
To: extropy-chat at lists.extropy.org
Subject: [ExI] HF health news
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 allows.
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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