The documentary “So Much So Fast”, directed by Steven Ascher
and Jeanne Jordan, from Sundance in 2006, presents an account of a young man
with ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s Disease, a form of “motor
neuron disease”), and it will be of interest since there is a current popular
film about Stephen Hawking playing (Nov. 14 here). The
film is based in part on material in the Pulitzer-Prize winning book “His Brother’s Keeper: A Story from the Edge of Medicine", by Jonathan Weiner.
This time the person is Stephen Heywood, who was diagnosed
at age 29 in 1999. He was an architect
who remodeled old houses in Massachusetts.
I don’t recall if I ever saw him on “This Old House” on PBS,, but that
would be likely.
His older brother Jamie would become a major crusader for
research, and for getting pharmaceutical companies to develop medications for
which there would not be a large market in patient numbers (the orphan disease
problem).
Stephen would marry and actually father two children. He would slowly progress, to needing a feeding
tube and then a respirator. He would use
a computer to talk and the voice (from Microsoft) sounds like Stephen Hawking’s,
except that Heywood’s messages would be longer and more personal.
The film opens and closes with scenes of Stephen in the
water or on the beach. The film was
completed before Stephen died at age 37 when his respirator became detached,
according to Wikipedia.
The official site is here from Balcony Releasing and Cinedigm. The
film occasionally offers impressive shots of Boston, especially in February
blizzards.
The best site for the ALS Association with basic facts is
here. ALS can develop very gradually. It is usually diagnosed in middle age or even
after age 60, but it occasionally occurs much earlier. It is not always genetic, and may be related
to toxins, pollutions, autoimmune disease or viral infection. There are other related motor neuron diseases
which may be milder. I think it is
possible to have very low level symptoms for many years and not have them
become disruptive until later years.
Once diagnosed, life expectancy is poor, but may be increased with a
respirator and feeding tube, which can allow the person to remain mentally
active and work with a computer. The
mind is not usually affected.
The ALS Association was associated with the Ice Bucket
Challenge, which became involved in a bizarre trademark legal fight. Some people saw the ICB (with its
chain-letter of “nominations”) as coercive and in poor taste. Belgian actor-singer-producer Timo Descamps
offered a creative response to the ICB in this short video on the CA coast,
link.
In both this movie and in two movies about Stephen Hawking,
I’m impressed about the readiness of someone else to have an intimate marital
relationship with someone with a major disability (and that can cover a lot of
ground, including war injuries for veterans).
If one is not willing to consider this, it can be much harder to be
helpful to others, without being in a “pay your dues” mode.
Wikipedia attribution link for Stephen’s Profile illustration.
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