Tuesday, November 18, 2014

"So Much So Fast": architect Stephen Heywood battles ALS

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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