TLDR: http://venturist.info/aaron-winborn-charity.html
So maybe you've heard about my plight, in which I wrestle Lou Gehrig in this losing battle to stay alive. And I use the phrase "staying alive" loosely, as many would shudder at the thought of becoming locked in with ALS, completely paralyzed, unable to move a muscle other than your eyes.
But that's only half the story. Wait for the punchline.
As if the physical challenges of adapting to new and increasingly debilitating disabilities were not enough, my wife and two young daughters are forced to watch helplessly as the man they knew loses the ability to lift a fork or scratch an itch, who just two years ago was able to lift his infant daughter and run with the 7-year-old. The emotional strain on my family is more than any family should have to bear. Not to mention the financial difficulties, which include big purchases such as a wheelchair van and home modifications, and ultimately round the clock nursing care, all of it exacerbated by the fact that we have had to give up my income both because of the illness and to qualify for disability and Medicaid.

Meet me, Aaron Winborn, software developer and author of Drupal Multimedia, champion of the open source software movement.
Years ago, I worked for the lady of death herself, Elisabeth Kübler-Ross, the author of On Death and Dying. Of course, I knew that one day I would need to confront death, but like most people, I assumed it would be when I was old, not in the prime of my life. Not that I'm complaining; I have lived a full life, from living in a Buddhist monastery to living overseas, from marrying the woman of my dreams to having two wonderful daughters, from teaching in a radical school to building websites for progressive organizations, from running a flight simulator for the US Navy to working as a puppeteer.
I accept the fact of my inevitable death. But accepting death does not, I believe, mean simply rolling over and letting that old dog bite you. Regardless of the prevalent mindset in society that says that people die and so should you, get over it, I believe that the reality we experience of people living only to a few decades is about to be turned upside down.
Ray Kurzweil spells out a coming technological singularity, in which accelerating technologies reach a critical mass and we reach a post-human world. He boldly predicts this will happen by the year 2045. I figured that if I could make it to 2035, my late 60s, that I would be able to take advantage of whatever medical advances were available and ride the wave to a radically extended lifespan.
ALS dictates otherwise. 50% of everyone diagnosed will die within 2 to 3 years of the onset of the disease. 80% will be gone in 5 years. And only 10% go on to survive a decade, most of them locked in, paralyzed completely, similar to Stephen Hawking. Sadly, my scores put me on the fast track of the 50%, and I am coming up quickly on 3 years.
Enter Kim Suozzi.
On June 10 of last year, her birthday, which is coincidentally my own, Kim Suozzi asked a question to the Internet, "Today is my 23rd birthday and probably my last. Anything awesome I should try before I die?" The answer that she received and acted on would probably be surprising to many.
On January 17, 2013, Kim Suozzi died, and as per her dying wish, was cryonically preserved.
She was a brave person, and I hope to meet her someday.
So yes, there we have it. The point that I am making with all this rambling. I hope to freeze my body after I die, in the hope of future medical technologies advancing to the point where they will be able to revive me.
The good news is that in the scheme of things, it is not too terribly expensive to have yourself cryonically preserved. You should look at it yourself; most people will fund it with a $35K-200K life insurance policy.
The bad news for me is that a life insurance policy is out of the question for me; a terminal illness precludes that as an option. Likewise, due to the financial hardships in store for us, self-funding is also out of the question.
When I learned about Kim Suozzi's plight, I reached out to the organization that set up the charity that ultimately funded her cryopreservation. The Society for Venturism, a non-profit that has raised funds for the eventual cryopreservation of terminally ill patients, agreed to take on my case.
Many of you reading this post have already helped out in so many ways. From volunteering your time and effort to our family, to donating money towards my Special Needs Trust to help provide a cushion for the difficult times ahead.
I am so grateful for all of this. It means so much to me and my family to know that there is such a large and generous community supporting us. I hate to ask for anything more, especially for something that may seem like an extravagance.
But is it really an extravagance?
If I were to ask for $100,000 for an experimental stem cell treatment, I doubt that we would even be having this conversation. No one in their right mind would even consider a potentially life-saving procedure to be an extravagance.
And what is cryonics, but a potentially life-saving procedure?
People choose from among many options for their bodies after death. Some choose to be buried, some choose cremation. Some choose to donate their bodies to science. That last is precisely what happens with cryonics: in addition to helping to answer the obvious question of will future revival from cold storage be possible, many developments in cryonics help modern medicine with the development of better preservation for organ transplantation and blood volume expanders.
Yes, I admit that the chances of it working are slim, but have you looked at the state of stem cell research for ALS lately? Consider that the only FDA approved medication to treat ALS, Rilutek, will on average add 3 months to one's lifespan, and you might begin to see my desperation.
But you should be happy with the life you've had. Why do you want to live forever?
The only reasonable response to that is to ask why do you want to die?
I love life. Every morning, even now with my body half paralyzed, I awaken with a new sense of purpose, excited to take on the day. There is so much I have yet to do. There are books to write, games to create, songs to sing. If I can get the use of my arms and hands again, there are gardens to plant, houses to build, space ships to fly. And oh, the people to love.
So please help me to realize this, my dying wish.
http://venturist.info/aaron-winborn-charity.html
"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen."
- Elisabeth Kübler-Ross
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In looking at this further, if you Google search on "ALS herbs" and "Gehrig Herbs", there are some links you may find interesting. An expert on herbs is Dr. Andrew Weil in Arizona Center for Integrative Medicine; he might have some suggestions to pursue in concert with your doctors. There are several herbs suggested to resist neural degeneration. Hard to know what to believe as some of the recommendations are on sites that sell herbs.
Search also on "gehrig fruit", to find a webpage about an Annals of Neurology study by Alberto Ascherio at Harvard, for an article with the text "Bright colored fruits and vegetables may hold the power to prevent or delay Lou Gehrig’s disease, also known as amyotrophic lateral sclerosis (ALS), a group of U.S. researchers found.". And you can ask yourself, from the name of a related book, "What Color is Your Diet"? Which may be hard, because if anyone has a "right" to unhealthy comfort food, it would seem to be you and your family.
One thing that surprised me also were discussions about mercury fillings (and other dental infection issues) and neural degeneration. Could there be some common toxin like that or something else related to ALS? Search on "Mercury ALS" for those discussions. Could people with ALS be sensitive, say, to some pesticides used in farming? Some pesticides work by destroying the nervous system of insects. Search on "ALS pesticides" for related discussions. Note that even if you have mercury fillings and eat foods with pesticides, it is possible that overall superior nutrition may better help your body to deal with related challenges even if you don't do anything about the challenges themselves. For example, the body does have biochemical pathways that excrete mercury, so the question might be, why are those pathways not working correctly in some people with ALS?
Still, I don't want to provide false hope, and likely all of these won't do much beyond perhaps slow the degeneration (if they work at all). Just making sure you have considered these options, even if they may not apply for you. There are multiple ways to approach diseases by trying to understand root causes, and mainstream medicine often ignores some of these basics, since there is no profit in telling people basic advice compared to selling drugs and procedures. As Dr. Joel Fuhrman says, we all have weak links (and strong ones) from genetics; whether those links get pulled on tends to be a function of diet and lifestyle.
Following those sorts of links has led me to the story of someone who kept ALS at bay for ten years (although eventually succumbing to it). Here is a sample page from his blog on mercury and ALS:
http://fromnightmarestomiracles.blogspot.com/2010/10/mercury-heavy-metal...
About Joe Wions from his blog: "In 2003, I was forced into early retirement by ALS (aka Lou Gehrig’s Disease), from a successful career as a management consultant. Facing the nightmare that my life was about to end prematurely, I began to contemplate the horrors of a difficult demise, abandoning my family, financial ruin, and other emotionally crushing issues. It took about a month to shake off the depression, and get busy. Since traditional medicine offers no cure or effective treatment, and the expectation of certain death, I began exploring alternative medicine and healing practices. Along the way, I have experienced miracles of friendship, community, personal insight, courage, strength, and healing. As a result, I am now a member of an elite group – the less than 10% of PALS (persons with ALS) who have survived 10 years or more. I intend to keep exploring and learning until I heal completely, or until medical science finds a cure. I am currently seeking help to publish a book about my experiences. By sharing my story, I hope to inspire and motivate others with difficult challenges to find creative, productive and satisfying ways to persevere."
Even as he has passed on, maybe the information he left behind there may be of use to you?
A decade is a long time these days in medical research. Not saying that would work for you though. Just stuff to explore, the same way Joe Wions did.
It's ironic to think off all the knowledge about what works and what doesn't work to treat or prevent disease may be locked up in NSA computers if they indeed record all our conversations and emails with our doctors and relatives about medical issues (as well as anything else) -- but ironically that knowledge is not accessible for improving medical care because such organizations focus all that trillions of dollars of technology and innovation on preventing having historically thousands of US Americans killed by terrorism instead of preventing annually over a million US Americans killed by disease.
Anyway, I guess it may be hard to improve over Google these days for background medical research, if you kind of know what to look for in the first place from years of trial and error. And it is also hard to sift through the junk and scams from the gems -- very hard (why I think sensemaking tools could help with that). There is a funny Dilbert cartoon about "The Google Health Plan" somewhere. That is indeed where a caring competent medical professional may come in handy -- if your doctors listen and are always self-educating.
So, it looks like it is possible to at least manage the ALS disease for a decade, in some cases, with some combination of nutrition (including colorful organic fruits), herbs, perhaps removing toxins like mercury or pesticides, and similar approaches. Although, which is the right approach may be hard to figure out. Hopefully you have good doctors to help with that. MDs like Terry Wahls, Joel Fuhrman, Andrew Weil, or similar doctors may be able to help you in doing that.
You could create Drupal computer software and related content so the world could collectively use its wisdom and experience to make better sense of health challenges? But why wait?
Here is a page with health information I have collected, as part of a related proposal I made to changemakers on "Health Sensemaking":
http://www.changemakers.com/discussions/discussion-493#comment-38823
See especially the link to Dr. Terry Wahls, who overcame a diagnosis of MS with improved nutrition from lots of fresh vegetables, vitamin D, omega 3s, B-complex, and avoiding junk like processed sugar, refined starch, and food additives. Not the same disease, since MS apparently involves the myelin that is attacked, whereas ALS involves motor neurons degenerating -- but inspirational none-the-less, given Terry's doctors had otherwise written her off and she had been confined to a recliner and was otherwise fading fast. Human biochemistry is adapted to a life outdoors in the sunshine, with lots of exercise, lots of organic foods with lots of fiber, and so on. Humans are not adapted to a sunless life indoors, sitting in one place, eating processed foods.
From her web site: "For four years, secondary progressive multiple sclerosis confined Dr. Terry Wahls to a tilt-recline wheelchair. But by using Functional Medicine to create the Wahls Protocol™, Dr. Wahls has transformed her health and body: now she walks easily without a cane and commutes by bicycle. Dr. Wahls uses these diets and protocols in her primary care and traumatic brain injury clinics and is leading a clinical trial to test her protocols on others."
Again, a different disease, but just trying to say that sometimes the human body's capacity for healing can surprise us. Still, from Dr. Joel Fuhrman's members board (he's a family physician who focuses on superior nutrition) from a post he made at 08-22-2011, 10:36 PM: "I have had a some ALS patients over the years and they all report that they progress at a much slower rate and have their lives extended considerably compared to others with the same condition. I consider them successes, but they did not reverse their conditions."
Still, maybe that would be something good for you to consider? Every year longer buys time for a better cure.
If you want an even bigger challenge for the future along the lines you asked for -- come back and help build self-replicating space habitats so everyone can live in sci-fi places with great medical care like Blomkamp's "Elysium" and Banks' "Culture" and Hogan's "Chironia".
Anyway, to build on the point made by Anonymous in "ALS and the Quantum Computer", perhaps the entire universe is a computer simulation (search on "Simulation Argument")? Who really knows how it all fits together? Or what is really possible? In any case, as Valerie Harper said of her diagnosis of brain cancer, "I don’t think of dying. I think of being here now..."
Humor can also at least make things a bit better. Search on comedian "Brett Leake" (who has MS) also for some inspiration.
Good luck to you and your family in making the most of the time you have together.
It's fantastic that you are getting ideas from this paragraph as well as from our discussion made at this time.