Password Algorithms: What to Do When You've Been Hacked

Last night, I was sent an email from a friend whose email was hacked. I am seeing a lot of that in the past year or 2, so I thought I would share my response to help train folks into better password habits. And seriously, I think that it would be a good practice to install the Password policy module on all your Drupal sites, to help enforce better habits for everyone. That module can be configured to force passwords similar to what I described here, and much more, such as requiring that passwords be periodically changed.

Image CC-BySA from http://gawdoflolz.deviantart.com/art/My-password-322798011

Dear (Friend),

I got those emails, it does look like it's possible that your email was hacked. You did the right thing, by changing your password. However, we need to do a few other things to try to minimize the damage.

1st, it is entirely possible, in fact probable, that they did not actually hack your computer. Identity theft is rampant, and in this interconnected world, does not even require any access to your computer.

That said, it is still possible that your computer has a virus. That would be the 1st thing to check. If you have an antivirus program, you need to ensure that it has been updated. That may require a fee, if you are using a paid antivirus program subscription.

If you do not have an antivirus program, I would highly suggest Avast, which I have been using for years. You can safely use the free version of it, as it is not crippled in any way from the paid version. You can find it at http://avast.com.

After, and only after you have scanned your computer for viruses, then you can get on with the business of securing your accounts against identity theft.

You will need to change your email password yet again, I am sorry to say. Additionally, you will want to change the security questions, which I believe that Yahoo will ask.

Treat the security questions as passwords in themselves, as these are most commonly used to hack in to an email account. That means that you should not use anything resembling what they actually ask for, such as your mother's maiden name or your 1st dog. That can be discovered with Google these days.

Next, a word about passwords. As you may have heard by now, you need to have a password that cannot be guessed. Unfortunately, that is not enough. You also need to have a mix of cases, at least one number, and a special character, such as a punctuation mark. Additionally, you need to have a different password for every account that you have.

I cannot stress that last paragraph enough. It is too easy for a hacker to get into, say an account with a forum, and use that to get into your Wells Fargo account. For instance, to use myself as an example, about 6 years ago, I accidentally broadcasted my password into a chat room, and about 2 weeks later, I got an email from a woman wondering where her Gucci bag was that she had purchased from my eBay account. It turns out that someone in Russia had hacked into my eBay account and listed about 100 fake Gucci bags.

I know that this sounds daunting, but it is necessary. Fortunately, you can use what is called an algorithm to remember your dozens of new passwords that you'll need to create. You can use that to create a new password for any site, and you will always remember it. Additionally, it will be secure for all intents and purposes.

Basically, you will choose a passphrase, modify and, and apply it to any site. For example, and please do not use this example, let say you choose "apple" as your passphrase. We will modify that to have a punctuation mark and a number, so that it will be "@pp1E". Then you would append that to the 1st 4 characters of whatever site that you are creating an account for. For instance, for eBay, your password would be "ebay@pp1E", and your Hotmail account would be "hotm@pp1E". This will make your passwords immune to so-called dictionary attacks, where they try to figure out your password by entering random words from the dictionary.

Much easier to remember, right? And for your financial accounts, I would suggest creating yet another algorithm, as an extra layer of protection.

You can apply this same idea to those security questions that you see everywhere. Basically, you do not want to actually use a real answer, because it is far too easy for a determined hacker to read about that experience in your 1st car that you posted in Facebook. Instead, treat them with the same respect as your passwords. For instance, you might create an algorithm with your grandmother's cat's name that you apply to a site's question for referring to your own pet.

Once you have done this, you should be fairly safe.

Good luck.

As a postscript, and not to deflect responsibility, it is entirely possible that your email was not the one hacked. It may have been a more intelligent hack, where someone hacked into someone else's Facebook account, for example. From there, they may have grabbed the contacts and spoofed an email from it, sending spam and making it look like it came from yours. This is a more insidious form of identity theft that is becoming more common. Still, the best defense is to secure your passwords.

Open Source Software Developer with Terminal Illness Hopes to Opt Out of Death

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

Letter Writing Campaign

My good friend, Hannah, has started this letter writing campaign. Here is her appeal:

Christmas 2012

Dear Friends,

Funding for the Attendant Care Waiver/Act 150 Program has essentially been frozen in Pennsylvania due to the lack of movement on the federal budget. Act 150 provides funding for supports and services that allow people with physical disabilities to continue to live at home with their families. This funding is vital for the well-being of Aaron and his family.

My response to the FDA's Prescription Drug User Fee Act Patient-Focused Drug Development Meeting

So get this. The FDA just announced a list of 20 diseases that they will focus on over the next 5 years. And guess what disease did not make it on the list, which includes such notables as narcolepsy, diabetic foot infections, and female sexual dysfunction? Not that I have anything against people who suffer from these other diseases, which also include HIV, lung cancer, and hepatitis C. It’s just that, come on, get serious. ALS should be at the top of the list, rather than invisible, mysteriously forgotten by the suits at the FDA, who are listening to paid lobbyists, and not the patients.

So read my response to them below. They are collecting comments from the public before they make their final decision. If you are so inclined, you have until November 1 to comment.

The Evil Empire

I am the father of 2 young children, and last year, I was diagnosed with ALS. This disease has already wreaked havoc in our lives, as it has left me without use of my arms or hands, and with a severely compromised breathing capacity. The best is yet to come, however: I will become increasingly dependent on my foot-control power wheelchair for mobility as the atrophy in my legs and feet continue; as my swallowing and speech continue to decline, I will need to be fed through the feeding tube that has already been implanted, and I will only be able to communicate with the eye gaze tracker hooked up to my computer; and I will soon need to decide whether to die or to accept a locked-in state with invasive artificial ventilation.

I was disappointed to learn that ALS was not on the list of 20 diseases being considered for the FDA's Patient-Focused Drug initiative. I can only assume that, considering a new patient is diagnosed every 90 min., while another dies every 90 min., this is an unfortunate oversight that will surely be corrected.

This disease is among the most universally feared outcomes that a person could be diagnosed with. That we have come 140 years since its discovery without a cure, any reasonable treatment, or even a hint of its cause, is a travesty. Please, for the sake of the 30,000 Americans who currently live with this horrible disease, their caregivers and families, and the 5600 unfortunate souls who will be diagnosed every year, reconsider your position, and help fight ALS.

Thank you,
Aaron Winborn

Special Needs Trust

This is a difficult post to write. I had been sitting on it for several months, trying to decide best how to convey the emotions I am feeling.

A few weeks ago, I was asked by a stranger if I had been in a car wreck, as I was wearing my neck brace. I replied that I was in a train wreck, and I was distracted by another person before I could finish my thought. He later asked where the train wreck took place, and I apologized for misleading him, and said I should be so lucky.

When I was first diagnosed with ALS last spring, I was overcome with grief, and spent many hours over the next month sobbing and screaming in rage. Eventually, life took over again, and I set all that aside for a while. After all, I still had two young daughters to help raise.

My Family

Most of my initial fears have come to pass. I remember the initial struggles lifting Sabina, just a few short months after her birth, before we even knew that there was anything close to serious going on. By January of last year, I was not even able to pick her up at all. Fortunately, she began crawling soon after, and had figured out how to crawl into my lap when she wanted me to hold her. I am so happy now when she climbs up on my lap to have me read a story to her or to watch a YouTube video.

And Ashlin has been very understanding and helpful through this whole process. As I have been unable to give hugs for several months, she came up with a method where she pulls my arms behind her back. I just about cried the first time that she did that. The last couple of months have been difficult, as I am no longer able to turn the pages of books when I read to her. At first, she went through a period when she didn’t want me to read to her at all. But then she spoke with Gwen about her feelings about it, and now she turns the pages for me.

Sadly, however, I know that the worst is yet to come. I will be visiting with the ALS clinic soon in order to get a power wheelchair. At the same time, we need to expand our bathroom to accommodate it, and put in a ramp in the back. And yet, that transition does not feel particularly big for me. Much more difficult has been the fact that I need artificial ventilation in order to breathe at night already. Or that I am unable to play frisbee anymore.

Aaron Welch with Advomatic recently set up a Special Needs Trust in my name. This unique trust allows us to use funds contributed by outside sources (we are legally not allowed to contribute to it), while protecting my eligibility to receive care-giving assistance through the state. The funds can be used to support my needs beyond what I will eventually receive from Medicare/Medicaid.

Basically, at some point down the road, I will be on disability and eligible for Medicare. The good news is that this happens almost automatically for a patient with ALS, due to some lobbying in the last couple of decades. As my needs increase, however, I will need more care and will need to become eligible for an attendant care program in PA, for which the income and asset allowance is almost nothing.

If and when I choose artificial, invasive ventilation, I will require 24 hour care. At that point, I would also need to be Medicaid eligible. This is where things get extremely challenging financially. For example, with attendant care / Medicaid, not only do I need to be basically destitute, but the state looks back over 5 years, and if they see that I have given any money to anyone in that time frame, they assume that I am trying to scam them, and dock the time, adding several months or more to the time before I would be eligible.

Based solely on the odds, there is a 50% chance that I will die in 1 to 2 years, although it’s a little more complicated than that. There are two predominant flavors of ALS: bulbar onset (the brainstem) and limb onset. Mine is the limb, which makes it only slightly more likely that I may live for another 3 or 4 years instead.

I want to point out that I am doing everything humanly possible to beat those odds. When they talk about the life expectancy of ALS patients, however, they are really talking about the "survivability", which is the point when a patient would require invasive ventilation to survive. Most of the 10% who will go on to live a decade or more have reached this point and are locked-in as well, trapped in their completely paralyzed bodies.

We have done what we can to protect what assets we do have. We have been consulting with an attorney as the information is very complex and we want to protect the future for our children as best as we can. We know that major purchases are down the road, such as medical and communications equipment, home modifications, a wheelchair, and an accessible van, all of which will be in the tens of thousands of dollars. The cost to support a patient with ALS in the later stages can run easily up to $100,000 a year or more. The funds in the Trust can help support me while I am alive. After I die, the funds remaining in the Trust will go to my wife, Gwen, to help raise our children.

For those who wish to contribute, we have set up a bank account for the Trust. We have set up a PayPal account as an option to contribute. For a one time donation, click on the Donate button. To make a recurring monthly donation, you can select the amount you wish and click Subscribe. Alternatively, we can accept checks for the Trust; contact me for more information if interested in sending a check.

One Time Donation

 

Monthly Recurring Donation

I am angry at this stupid disease. I know from my time with Elisabeth Kubler-Ross so many years ago that this is a natural part of the grieving process, and that eventually I will enter the acceptance phase. I even look forward to that.

But my daughters, Ashlin (8 years old) and Sabina (2 years old), will not have the benefit of the acceptance of my death when it happens. I am being robbed of my time with them, of watching them grow up. It is hard enough to know that I will most likely not be around to watch Ashlin graduate. To know that Sabina will most likely not have any more than a fleeting image of her father from early memories makes me cry.

To add insult to the injury, I am quickly losing my ability to participate in their lives, even now, becoming simply a spectator. What I would give to be able to pick up a frisbee and toss it to my daughters.

I want to thank everyone for all your ongoing support and care. This slow-moving train wreck is more than any family should have to endure.

Demo of Drupal's Media: YouTube module

The following transcript is for the video at http://www.youtube.com/watch?v=XfPKKisE88w :

Hello, my name is Aaron Winborn. I am a developer for Advomatic, the author of Drupal Multimedia, and a contributor and a co-maintainer of several Drupal modules, including the Media suite of modules.

Today, I will demonstrate a new feature of the Media: YouTube module: browsing and searching videos directly from YouTube, in the media browser itself. So first, let’s set up our environment.

We are assuming that you already know how to install Drupal. If not, you can find information at Drupal.org.

So right now we are at the modules administration page. We are interested in the modules under the Media package. You will need to install and enable the File Entity module (version 7.x-2.x), and the same version of the Media module.

We will not enable the included Media Field module; it is there for legacy purposes, and has been deprecated in favor of core’s File Field.

The Media Internet Sources module, included with the Media module, is a dependency of the Media: YouTube module, so we will enable that.

Next will be the Media: YouTube module, also version 7.x-2.x.

Finally, we will install the WYSIWYG module.

Let’s start by configuring WYSIWYG. We do that by going to Configuration > Content Authoring > WYSIWYG profiles. Note that I have also installed and enabled the Admin Menu module and the Admin Menu Toolbar module, which gives us the fancy drop-down menus for administration that you see here.

Now in order to use WYSIWYG, you need to have also installed a third-party WYSIWYG library, such as CKEditor or TinyMCE. You need to follow the instructions with the WYSIWYG module to install that, although it is quite simple actually. You just download and unpack the file into the sites/all/libraries folder. You can see that I am using CKEditor here.

The WYSIWYG module allows us to set up profiles for the various text formats on our site; in this demo, we will edit the Filtered HTML format.

Open up the buttons and plug-ins field set next. Then check the Media Browser check box. That will add the media browser button to our WYSIWYG editor, which we will see soon.

In order to use that however, we need to configure the filter in question. In fact, I believe that if we do not do this step 1st, we will get an error message, complete with a link to the format configuration page.

On this page, we need to check the box next to “Convert Media tags to markup”. That is the answer to the number 1 support question that we get in the Media queue, which is, “Why is there bracketed goobly gook instead of my images?”

So now, as we will see, everything should be working now. So let’s test it.

Here on the create article page, we see a fancy button on the body text area! Let’s click it.

And there we go.

These are thumbnails being pulled directly from YouTube. How about that?

And there is even a ghetto pager, or at least previous/next links.

And you can also search YouTube directly from our browser.

So now we will select a video and submit it. Add a title and save the node. And there we go.

And that’s it really. Well, almost.

There are some more settings, specifically here to control which tabs show up for WYSIWYG. Note that at the time of this demonstration, you will not have this functionality unless you install the patch over at node 1434118.

To complete the demo, we will also do the same for fields. Let’s add a field to hold YouTube videos. We will call it Media, and it will be a file field with a Media file selector widget.

Here, let’s reorder it as well for the demo.

We leave everything at their default settings.

Hold on, I forgot that we need to allow the YouTube URI scheme. And the video file type.

So now we will create a new article, and select the media.

And here we have all the tabs available to our browser, including the new and improved YouTube tab.

And also, let us look at another new feature of the media module: My files!

This has been a long-awaited feature for the Media module as well.

Now here comes the 2nd most asked question in the support queue: “How come there is a link to my file, rather than the file itself?”

Let’s just fix that now.

Now we are in the file type administration page, where we can configure the display for each of our file types. Note that we can also add fields to our files, although we are not going to do that in this demo.

We will jump to the video display...

No, we want to make sure that our large formatter is set up properly for YouTube. And it is, so let’s set up that as the formatter for our Media file field.

And there it is, as a generic file, which is simply a link to the file stream itself. We will change that to rendered file. And then we set the view mode to large.

While we are in there, we can do the same for our teasers. We will just set that to the preview view mode, which by default will display a thumbnail.

Whoops, I forgot to save it. Let’s just do that again.

And there is the video.

And there is the thumbnail.

Well done!

Spammer with a Heart of Gold

I received a most heart warming comment from a spammer the other day. To understand why it has affected me, you might first need a little background. I have been diagnosed with Stephen Hawking’s ALS, or Lou Gehrig’s disease. Based on just that fact, and that my lab scores are dead even (and that I do not have access to Mr. Hawking’s money or universal health care) I will most likely die sometime in the next year or two.

I announced my condition to the world through my blog last August, and have had many heartfelt wishes and offerings of support.

And lots of spam.

I use Mollom to protect my blog which is powered by Drupal, and it does a fairly decent job. Still, about 50 instances of spam make it through the filters every month. I have to handpick those out, which is an increasingly difficult task, considering that I have little ability to use my hands anymore.

So this one comment stuck out, beginning as so many do, with concern for my condition, and well-intentioned advice, in this case to seek out Ayurvedic medicine. But then, the poster went on to chastise other spammers on this site, and I quote:

One more thing for some persons who comment here. Don't forget that you are humanbeing. I also come here to place my link here. But when a person is in such a condition and place his feelings here, then how the hell you are posting your links here for business purpose. I am also doing SEO. But not at the cost of humanity. It is the time to help and support him, materially or mentally. If you can't do that please don't at least post here.

It is my sincere request.

This is a good reminder that even as we continue to fight the war against spam, that our combatants are human. Like so many soldiers, they are fighting for money (for “business purpose”). They also create internal justifications for what they do (“I am also doing SEO”).

And that at least one of them has a heart of gold.

Thank you, Dillip.

(Here's a better version of the song.)

Heaven Can Wait

I had an appointment this morning with my primary care physician. I thought that the appointment was to request a new lab test. Little did I know that the appointment was really so that my doctor, who shall remain nameless, could wax philosophical on me.

For nearly fifteen minutes, I was subjected to a lecture about how I should look forward to heaven. As if that were not enough, he left me with a list of related reading material. And then he went on to tell me about how I should do something meaningful with my life, such as telling my story to the local paper, so that I can raise awareness of the devastating effects of ALS on one’s life.

Stairway To Heaven, by Tizz77

I am not defined by this disease.

I am sorry, but I don’t need to be told how to die or how to live. I feel like I have a good handle on both. And it’s not like I don’t want to hear about others’ perspectives on life and the hereafter, it just seems rude to lay it on someone without being asked first.

I used to live with Elisabeth Kubler-Ross, who wrote “On Death and Dying.” Not that he would know that of course, although he may have if he had shut his yap for more than five seconds.

To add injustice to the whole thing, he didn’t even order the lab tests that I had requested. I had wanted a Hair Element Test, to get a count of mercury in my body. He pooh-poohed that, telling me that because different labs report different numbers, that the test is meaningless. He instead ordered a Heavy Element Blood Test, which I have already had. I thought that I was prepared for a little skepticism, but after his lecture, I walked out of that office in a dazed condition.

Needless to say, I am open to recommendations for a new family doctor.

"Cookie, Cookie!"

“Cookie” has been the refrain from Sabina every morning for the past couple of weeks, thanks to Dustin and Lisa who brought us brownies the Monday before last. This is, in fact, the only word that she will say right now: Sabina will play with a word when she learns it, speaking it only about half a dozen times usually, before she decides not to say it anymore. She actually has quite a vocabulary, including such forgotten gems as “kitty”, “more”, and “sky”.

My family came up from Virginia last weekend, which was fun. It was good to see my aunt, uncle, cousins, and grandmother. I’m glad they got to see Sabina & Ashlin again in this snapshot visit.

The other night, Sabina and I danced to the Wii. She particularly enjoyed marching (to “The Ants Go Marching On”) and wiggling (to “Pop Goes the Weasel”). Ashlin did not dance, as she was cleaning the house, because Makaela was having a sleepover here that night.

Shauna painting a tree in Ashlin's room

Today, Shauna is painting a mural in Ashlin’s room, and Lisa and Wolf did prep-work. Stef is here babysitting Sabina while Gwen and Jessica are working at our old house. Stef is planning to bring Ashlin to Claire’s farm tomorrow, where they will find pastel eggs. Shades of Easter...

It was amazing watching how quickly the house was moved a couple of weeks ago. So many people working hard, and I felt like a lump, until Jane set me up directing traffic. I sometimes forget that I can still be helpful, even if I don’t have arms that work. I just wish there was something I could do to help get our Park Terrace house ready to sell. What’s been done there looks really great, and I know volunteers working over there must be getting tired and there’s still a lot that needs to be done. Gwen and I are deeply appreciative of all of you who are reaching out and helping with these tasks.

Theo is well adjusted to the new house. Since about the 3rd day actually. He prowls the neighborhood, on the lookout for moles, chipmunks, and small birds. When he is inside, both he and Mia like to sit by the front window, where they can look out.

I am doing well enough. My arms are a lot weaker, but everything else seems fine right now. Jon installed a bidet yesterday, which should give me a modicum of independence again. Which is also timely, as the agency providing in-home assistance has failed big time recently, failing to show up three times in the past two weeks.

That’s all for now. Sorry it’s been so long since an update.

To the Drupal Commuity

You may know me through my work with the Media suite of modules, and before that for my work with Embedded Media Field and Views Slideshow. You may have read my book, Drupal Multimedia, which I wrote before the birth of my second daughter, or seen me speak at a Drupal Camp or DrupalCon. You might have worked with me at a code sprint. Even if you haven’t met me, you might have seen some of my handiwork through one of the many sites I’ve helped developed over the years with Advomatic. Drupal has been a central part of my life - one of my three loves.

Earlier this year, my family and I were given some devastating news. I was diagnosed with Amyotrophic Lateral Sclerosis (ALS), more commonly known in the US as Lou Gehrig's Disease, which is a motor neuron disease that is slowly killing the motor neurons in my body. This is an incurable, terminal illness: 50% of patients diagnosed are dead within 2-3 years, and a further 20% in five years. Only 10% of patients are still alive after 10 years, and the majority of those are "locked in", like Stephen Hawking, unable to move any part of their body other than their eyes. The senses and cognitive functionality are spared. The disease is a progressively degenerative Motor Neuron Disease (MND), that eventually kills every voluntary muscle in the body, until the diaphragm collapses, which is generally when the patient dies, unless they are given a tracheostomy (and don't succumb to pneumonia).

This rare disease is sporadic, with no known cause. It's considered an "orphan disease", with an incidence rate of about 1 in 100,000. My neurologist is hopeful in my case, as it's limb onset (rather than bulbar, or brain-stem, onset), and I'm on the younger side of the bell-curve. Still, an early prognosis is impossible, as the disease progresses randomly. Right now, he said that based on my EMG, he expects to see clinical signs in my legs by next year, although he can't say if I'll be in a wheelchair by then.

Currently, I am unable to lift more than about 1-2 pounds. It's been hard on my wife, as she's doing everything I'm unable to do (vacuuming, dishes, etc.), on top of raising our children and pursuing her Masters. Our house is the opposite of accessible, with no first floor bathroom and being on a steep hill. Thus, we're in the meantime looking to buy a ranch house that we'll be able to modify.

Although I have some visible atrophy in my shoulders, wrists, and thumbs, I'm feeling on top of the world. I'm trying to front-load my life now, to ensure I'm doing what I'm able to at full capacity while I still can. I'm hopeful; I've been expecting a medical revolution this decade, and if I can hold on with my wits, I might be able to take advantage of that. Even if that doesn’t happen, from reading about and connecting with other PALS (Patients with ALS), I've learned, unsurprisingly, that the longer-lived people are those who manage to maintain a positive attitude in life.

I'm fortunate to be working with Advomatic, both because my job (Drupal!) is something I'm still able (and love) to do, and because I'm surrounded by such a supportive team. I plan to develop for as long as I'm able; I'm looking into voice recognition software for when my hands ultimately go. In a race against time, I'm also 'voice banking', recording my voice so that when I ultimately lose my voice, the computer will sound roughly like me. (Hawking's complaint is that he sounds "like a damn Yankee").

I know that many of you will want to know how to help me and my family. I know from experience that the first response is to want to make food. I appreciate that, as a gift of food directly helps to sustain a person, but we have a large, helpful community through our daughter’s school that is delivering meals once or twice a week. (Although if you’re local to us, we could use some occasional help with the yardwork...)

You can also send donations to the ALS Center at Penn State Milton S. Hershey Medical Center
(see http://pennstatehershey.org/web/neurology/patientcare/specialtyservices/als for more details).

Finally, Advomatic will likely be setting up a fund to help for when I’m unable to work any longer, and to provide a legacy for my family. Please contact Aaron Welch if you are interested in contributing to this.

Thanks,
Aaron Winborn

"It's only when we truly know and understand that we have a limited time on earth - and that we have no way of knowing when our time is up, we will then begin to live each day to the fullest, as if it was the only one we had." - Elisabeth Kübler-Ross

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The Society for Venturism has chosen me as the recipient of its charity for this year, to hopefully offer me cryonic preservation when the time comes. And this month, Longecity, an excellent forum for the discussion of issues related to extending the lifespan of humans, has offered up a matching grant of up to a thousand dollars to help out! So help out! Please.