Indestructable - an award winning documentary about a man with ALS

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jamorel

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I discovered this film, and although I have not seen it, it looks interesting. I am going to include the link so you can see for yourself. It is also available to ALS patients at no charge if you would like to purchase a copy.

This is the summary: Diagnosed with ALS, a fatal neurodegenerative disease, filmmaker Ben Byer starts documenting his life on camera. What begins as a series of video diaries grows into an epic journey spanning three years and six countries as he scours the globe looking for answers - and a cure.

A cinematic adventure filled with extraordinary characters, breathtaking landscapes and abundant humor, Indestructible is beautifully shot by Academy Award™ nominee Roko Belic (Genghis Blues). In his first feature film, Byer takes us on a visually stunning global quest to survive as he begins to understand the power of the human condition.

and this is the website:

Indestructible - A Story of Survival
 
They have a page on facebook too.
 
Thanks, I will look it up.

Searching ALS I came across this articles written by Jerry Gladman. They are very good and very helpful.

Living and dying with ALS
 
I'll try and get a look at that - thanks for the info.
 
I requested and received a free copy of this movie a while back. It is interesting how it shows Ben Byer's progression over about three years. Much of the story ties into old and ongoing controversies in the ALS community. Unfortunately it is the nature of the disease that we all come and go pretty quickly, and except for the hard earned wisdom of our few long lived members, it is hard to have much institutional memory in our community. The movie provides a snapshot of some of the issues from a few years ago.

At the time, there was much excitement over a purported treatment based on a Chinese herb called Bu Nao Gao. It is used to make a rather vile-looking herbal tea and was thought to help with ALS. Ben Byer in the movie tries it but in the end it does not help. Another "cure" floating around was a Chinese stem cell treatment. Actually it was not stem cells exactly, but it was some kind of embryonic cells that were similar. They would drill holes in the head and inject them. There were testimonials from PALS who had had great results. After much soul searching, Ben decides to have the procedure, but once again in the end it does not seem to help.

A prominent figure in these endeavors is Ben's father, Steven Byer. He is a businessman and gets involved in importing and selling Bu Nao Gao, and later seemingly in helping bring American PALS to the Chinese clinic for treatment. It appears that his initial motivation is to get better prices for his son on these treatments, but the profit motive appears to raise its head and there is a big argument between him and his son about priorities.

Towards the end Ben visits Israel and it is a moving sequence, although I didn't care too much for his interview there with a rabbi. The big question these guys always try to answer is, why does God allow this suffering, and why are the particular people involved chosen? Let's face it, nobody's going to be able to answer that, and frankly there's been a million times more suffering in the world than that just caused by ALS, so we are far from being a privileged few who get to demand answers to this. So to me this is a pointless question to pursue. The best part of this sequence was Ben's hard, hard work to climb a famous hill in Israel, assisted by his brother - it was so moving to see how he worked to achieve this goal.

Ben is gone now but his father Steven Byer is still active in the ALS community and still attracting controversy. I believe he is involved now in the stem cell treatments in Monterey which a number of PALS have tried this past year, unfortunately without much success so far. So the film is an interesting document on how he got involved with ALS.
 
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