To the Drupal Commuity

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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

Comments

Antoun Sehnaoui's picture

Keep faith!

Hello Aaron,
just discovered your blog recently and read about your diagnosis. Illnesses are one of those things in life that you cannot predict and that can alter your projects and life forever. I can't imagine how hard this news has been on your family and yourself. Even if life might look bleak, hold on, keep faith and cherish every moment spent with your loved ones. Let's hope that science will eventually find a cure to ALS.

My thoughts goes to you and your family...

Antoun Sehnaoui

Dillip's picture

Only faith

Hi Aaron,
I don't know your present condition but if you are reading this post then listen me seriously. Or if anyone maintain this blog, please give this message to him at the earliest. First thing, don't believe the doctors at all. Certainly I am not blaming them. They are telling what they have been told during their training. But believe me.This MND is curable. As my brother had this around 25 years ago. His hand was shaking or sometime could not be moved and gradually became thin. The doctors told the same thing as you are told. But my father took him to a very old ayurvedic doctor. He advised that the first thing was that my brother had to keep faith on himself. And he gave some medicines and told to continue for at least 8 months. And after 25 years, my brother is still here among us.
So if you have any contact in India, please come here and go to any good ayurvedic doctor. But the first thing is to keep 100% faith on yourself.

My best wishes with you and pray God for your complete recovery.

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.

Anonymous's picture

Hopefully will be able to return you a favor

Aaron,

I have been inspired by your work in the Drupal community. I watched your video and downloaded your notes on YouDrup which has been essential for starting my Drupal career. I just visited your site and am sad to hear about your health issues. I have heard a little about ALS and know some researchers who know about ALS and other neurological conditions such as multiple sclerosis (MS) and they have taught me a bit about neurodegenerative diseases. In particular, I have spent a bit of time studying MS. I don't know much about your ALS but know that a doctor from Australia, Prof. Thomas Borody, has recently published several reversals of MS where people have left wheelchairs. Borody is not a quack, but a cutting-edge GI doc who actually invented the antibiotic cocktail therapy for stomach ulcers. Up to now, MS has been regarded as an incurable disease. His discovery was an accident as he is a world famous gastroenterologist who was treating MS patients for constipation by replacing their bowel flora. By accident they left the wheel chairs and no longer have MS. This is not hocus-pocus but rather some newly reported information that was published in October 2011 so it is fairly new and the science is cutting-edge. This information was released at a normal American College of Gastroenterology conference in Washington DC.

Also a research professor of medicine, Dr. Terry Wahls from Iowa, reported reversing her MS with a very specific diet which inevitably would change the chemistries in the bowel also, even though she did not mention this possible explanation in her videos.

I don't know how these discoveries could affect your situation but I suggest you look into it. If you haven't looked already, go to http://www.pubmed.gov to find the latest research on ALS for yourself. Practicing doctors are often decades behind the research in the labs and many have helped themselves from tough illnesses from the published research there. There is a website that discusses new research in MS at http://nubiome.com/blog/cutting-edge-multiple-sclerosis-research/ . If you review all of the information on the site, you can start to see the dots connecting between neurology, gastroenterology, immunology, and cardiovascular fields. In particular, unknown bowel bacteria creating chemistries that cause MS. It doesn't seem like too big a stretch to think that ALS could have a different set of chemistries involved that are also caused by undesirable chemistries from the bacteria bowel. Perhaps learning about the bacteria interactions will help you find a safe therapy.

A problem with medical research so far is that each branch of medicine (neurology, immunology, cardiology, etc.) seems to be fairly compartmentalized into silos with little cross-communication. From this MS discovery, it clearly shows that scientists need to look outside the central nervous system to find the root causes and therapies of the "incurable" neurological diseases. The lack of this activity is probably why these conditions have not yet been cured. However, this new announcement will surely accelerate new research and treatments for ALS and I hope can have an impact on your situation.

Take care

Alexis Bellido's picture

Proud of you

As a fellow web developer and father of two girls I wish the best to you and your family Aaron. You've already inspired many of us and I'm sure you'll continue doing it for a very long time.

Tim's picture

All the best

I’m just a web designer from Germany who came here unsuspecting via a link in an issue queue ... I’d like to say thanks for your great work and I hope you can keep on working on the projects you love and – even more – be there for your loved ones for a long time. I sincerely wish you and your family all the best in these troubling times.

Tim

Christopher Pelham's picture

Healing

Hi Aaron,

Thank you for writing so bravely and openly about the challenge you face. 15 years ago my acting teacher was diagnosed with ALS and her body weakened quite quickly over a couple of years. But even when she could not move and needed around the clock care, she chose to continue teaching us and all her caregivers. I could never again think that the body was anything more than a temporary vehicle. The only variable is how temporary. I am positive that you too will continue to inspire the people around you and allow your soul to do its work with the tools provided. I know I will continue to look up to your work and draw inspiration rather than fear from your life. May God be with you.

Shahar Or's picture

We are all expecting a revolution

It is already happening and it would be more beneficial for whomever wants to be in that revolution to find where it is already happening rather than wait for it to reach him.

Face Life's challenges with a head up high. Never give up. Ever. On anything.

Bless you and your family. May we all see the help that's given to us every day.

Janez's picture

I've never met you in person,

I've never met you in person, but I really appreciate your work. I wish you and your family all the best.

Be strong and positive!

Dries Buytaert's picture

Drupal

Aaron,

I'm really sorry to hear about your illness. I'm shocked, actually. You have been an incredible asset to the Drupal community, and I truly hope that you will continue to be one for many years to come. Stay strong, Aaron!

Robin's picture

Wow

I'm so sorry to hear your news. This is devastating, for you, your family, the Drupal community and for me. (Cause you are so young and I hate to hear about this sort of vulnerability.)

My thoughts and prayers are with you and your family.

Robin

Ryan Price's picture

Thank You

I hope you know how much your contributions are appreciated, but I want to say it personally.

I also hope your vision for the Drupal Guild moves ahead, with you at the front of it. It's really a great concept, and the world needs more movements like it.

All the best,
Ryan
@liberatr

aaron's picture

Thank you, everyone, for such

Thank you, everyone, for such a warm and supportive response. I love being part of the Drupal community; this gives me hope and strength to continue on. I look forward to hopefully many more years of contributing.

Stay strong,
Aaron

Sean's picture

Drupal was never about the

Drupal was never about the code, we're where we are because we have an amazing, supportive community of people that stand behind each other. Thanks so much for all your work and future work in the Drupal community its had a huge impact on all of us. Your positive attitude is a true inspiration.

Owen Barton's picture

Thank you for sharing such a

Thank you for sharing such a personal story - you have, and continue to be an inspirational and dedicated member of our community. Through my experiences, I have found it important (although sometimes hard) to be open to requesting and receiving support from others during hard times, and I would encourage you to do the same.

Anonymous's picture

Get Well Soon

Hello,

I never really had the opportunity to work with you, but you and your books have been a true inspiration for an amateur Drupal developer like me. Hope you get well soon.

Take care :)

ultimike's picture

Courage

What a courageous blog post. Sharing information like this in such a straight-forward and personal way really puts things in perspective.

I can't imagine what you and your family are going through. Stay positive and remember you've got a huge source of strength in the Drupal community rooting for you.

zzolo's picture

thoughts are with you

Aaron, you are an inspiration to the Drupal community, and my thoughts, as all of us, are with you. Your spirits and attitude are amazing, even before this unfortunate event.

Best,
Alan

sun's picture

The Difference

Aaron,

you made a difference in my life. Products, modules, hobby, business, Drupal aside - it is always a pleasure to listen and to do (and change!) something with you. It's been primarily your initial and ongoing initiatives, open thoughts, and arguments that gave me and many others lots of hope and direction.

I'd like to pass forward (or back!) that hope and direction to you. You really deserve it. There are many thoughts from others about time, tragedy, and sadness already. I merely hope that you're able to just do whatever you love to do with your time (which isn't always easy to do). Let us know if you need any kind of help (which is also not easy to do). You have an entire force behind you.

Thanks for who you are, what you did, and what you're going to do!

It means a lot,
sun

maria's picture

I hope that all of our love

I hope that all of our love and admiration for you adds to your strength and positive attitude in this time of adversity.
I never met you personally but I admire your writing and I consider you a valued Drupal big brother (since really all Drupalers are family). So hang in there and lean on us when you need to...much love to you and your family.

jozef's picture

Aaron, I've known you through

Aaron, I've known you through your amazing work for the Drupal community and I am grateful for all that. I was shocked when I heard about your disease.
I pray for hope and strength for you and your family and wanted you to know that I will keep you in my prayers!

Jozef

Desi's picture

Many thanks Aaron for your

Many thanks Aaron for your Drupal work and advice. Remember we are always happy to help. Best wishes to you and your family

Robert Douglass's picture

You've got a huge family

Namely, all the people you've helped through your work on Drupal. Anything we can do to help, we will. Thanks for sharing this with us. I can't imagine how challenging this is.

Best wishes,

Robert

Chris Bryant's picture

Your attitude is inspiring

Aaron, It's amazing to read your post and see your positive attitude, thank you for sharing openly as you do with your code! It's saddening to hear and I can only imagine how difficult it is, but if there is anything that can help you beat ALS it will be that positive attitude.

Sending more positive vibes to you and your family!

Brenda's picture

Good vibes to you and your

Good vibes to you and your family! You are truly inspiring. Thank you and best wishes.

Kent Bye's picture

Sorry to hear the news

Hey Aaron,
Really sorry to hear this news, and I wish you the best luck as you go forth with all of these new beginnings. It sounds like you're able to keep a positive attitude and choose your meaning around this.

"Everything can be taken from a man but... the last of the human freedoms - to choose one's attitude in any given set of circumstances, to choose one's own way." - Viktor Frankl, Man's Search for Meaning

redndahead's picture

You got this one

Your support and positive attitude throughout the drupal community shows that you are the type of person who can take this on with the strength necessary for this challenge. I look forward to continuing on the work you did with Views Slideshow and am sure I'll still see you in the queues supporting it for a long time to come.

Richard C's picture

“All that we are is the

“All that we are is the result of what we have thought. The mind is everything. What we think we become.” - I actually seen many Thai people recovered from serious illness, like cancer. I don't understand how it happened, but it did many time. They seem to have very good attitude.

Some of them do enjoy meditation, and look happy and stressless everyday. They cooks and eat natural foods, do exercise, practice breathing, live in fresh air and natural environment. Actually, they don't look like patient at all, they cure themself from the way they live.

For your infos, take a look at:
bangkokpost.com/news/health/32599/the-nine-pills-of-mor-keaw
bangkokpost.com/news/local/32597/

And you can ask him anything here:
facebook.com/pages/%E0%B8%AB%E0%B8%A1%E0%B8%AD%E0%B9%80%E0%B8%82%E0%B8%B5%E0%B8%A2%E0%B8%A7/201286636553665?sk=wall

PS: This wonderful man is a Ph.D. doctor, but freed his life and become kind of 'open source' doctor. He actually cure 1,000 peoples a year for free without any catch, so he received many awards unintentionally. There's a week short course too, maybe you might considered a Thailand vacation. Planned well, and it's a wonderful country to stay ;)

Get well soon.

Andy Hieb's picture

Cheers from the Drupal Community

Aaron,

I've never met you, but I've chatted with some of your colleagues at Advomatic and have appreciated your work and presence in the Drupal community for years.

I just wanted to say that I appreciate you reaching out to the Drupal community directly, honestly, and personally. It's a great reminder that amidst all of Drupal's meteoric growth -- the case studies of high-powered web sites and the wide reach of the software -- we are a community of people, that is our strength, and may it continue to be a source of strength for you.

Thanks for all you've done, and all you will do.

-- Andy

acouch's picture

our thoughts are with you

just wanted to say our thoughts are with you.

Zachary Krebs's picture

Drupal

Hey Aaron - I read your post and I understand that now is a terribly difficult time for you. I thought I would mention that you have some options you might not have considered. No disease is absolutely incurable, or static - that would be unnatural, everything in the universe is defined on change. Sometimes, however, we're unable to change or don't know what kind of change would be required to achieve the result we're looking for.

I do Drupal work and live with my Tai Chi instructor - I went over your situation with my teacher and he said if you were willing to practice for 2-4 hours a day, and basically dedicate your life to self-recovery, it could be possible to turn you around. Do a quick google search, you'll see that some people have already considered this. It isn't a pill or a medicine that you take to cure yourself, in fact its not just a cure - more than anything its a way to dedicate yourself torwards healing. Your health is more important than Drupal or the Media module, and frankly, I hesitate to mention this, but the 'programmer mind' itself is very much part of the problem, and why so many programmers get diseases. If you could somehow let go of that a bit, and recover, you might not have to lose your voice and your hands! Just saying, if that's important to you, you might consider some other stuff. Acupuncture / Tai Chi could potentially be the way to go...so really this is an open ended suggested and I've left my email and the website...feel free to contact me. If your first thoughts are doubt, unease and uncertainty about what I've said..that's about right, you should be unsure - so just follow up and check it out! Best of luck -

Ken Whitesell's picture

I don't live that far away

Aaron, although we've never met, I am familiar with your work. I'd like to offer whatever assistance I can provide. If you ever need help on a weekend, please feel free to add me to your list of contacts.

Ken Whitesell
(tskww on drupal.org)

Thomas Svenson's picture

Maybe Roger Ebert can help inspire

Hi Aaron,

So sorry to hear about this. So happy to read that you haven't lost your will to live and fight this as much as possible.

Not long ago I watched a truly inspirational TED Talk speech by Robert Ebert. He lost his lower jaw to cancer. He was a film critic, so speaking was very important. The cancer took not only that, but also his ability to eat.

He talks about how he, with the use of modern technology, has got his voice back. Since you write that you are already recording your voice, I think you can find some very useful information in his story about what he has done working with a UK company to improve their technology about giving the voice back to people who lost it.

Hopefully his story can help you too.

You'll find his talk at http://www.ted.com/talks/roger_ebert_remaking_my_voice.html

Hope to see you for many many years in the Drupal community.

/thomas

Anonymous's picture

Voice Software

I'm very sorry to hear of the news, a major asset to the Drupal community, Aaron your contributions speak for themselves.
I am not a programmer but I was recently giving some thought to the idea of a type of software that attempts to capture a "record" of one's personality and character by building an extensive collection of one's opinions and daily log records.
I lost my dad when I was about 21 and miss him greatly, I have faced many a dilemma and wished he were around so I could seek his counsel.
I was thinking along the lines of using voice to text software so a video can be archived, perhaps have photo's/albums associated and the content of it made reachable through indexing and searching.
I'm thinking this is possibly in part something that could be done with the help of Drupal, perhaps it would be possible to setup a site to hold all the data collected from recordings and make it accessible from there, I believe it would be possible to pull in one's twitter feeds, blog posts etc to further extend the data.
I am no expert in the field but I know Drupal can give us fine grained control over who gets to access what, maybe something like og_groups could be leveraged to restrict private content to for example "family group".
The voice records could also be useful towards as mentioned above 'voice banking', and the video could be recorded from multiple angles for later use with emerging technologies such as holographic projection.
I am not sure what is already available in this area or whether a Drupal distribution could be used to create a sustainable project, I simply wish to humbly share my ideas in case they may be of any use, I am just saddened it is under such unfortunate circumstances.

Denis's picture

Keep the force, Keep the

Keep the force, Keep the faith. We are with you.

dddave's picture

Do what you love...

...as long as you can.
I hope you can maintain your positive attitude (I think the Drupal environment might be good for that). It would be "fair" if you get a long and good ride for all your positive contributions.
Strength and good karma is what I wish for you and your family.

marcvangend's picture

...

Aaron, that's terrible news. Thank you for everything you have done for Drupal so far and for everything that it yet to come. I wish you and your family all the luck and strength in the world.

moshe weitzman's picture

Damn these illnesses. I'm so

Damn these illnesses. I'm so sorry ALS ha found you.

Your strength to carry on with work and finding a new home and pursuing new treatments is really inspiring. Thanks for all you have done, and continue to do for the Drupal community.

Jacob Redding's picture

An amazing man with more contributions than can be counted

Aaron,

My thoughts and prayers go out to you and your family. You are loved by everyone in the Drupal community for your contributions to the project and to society. Thank you for everything you have done.

-Jacob Redding

Benjamin Melançon's picture

Here's to beating the odds

Aaron, thank you for your Drupal work so far, not just in media and games other contrib but in your advocacy of Drupal Guilds. Don't let this stop you from taking advantage of the overdue medical revolution, but the Drupal community could really use our own Stephen Hawking... Great spending some time at DrupalCon Chicago; looking forward to more at DrupalCon Denver!

snyderp's picture

Reading your post shook me to

Reading your post shook me to tears. We've never meet or talked, but I owe you hugely for your work, both professionally and in the fun I've had working with your code and modules. I just wanted to echo what Mike said above that you and your family are in my thoughts and that I wish you all the luck in the world.

mikeker's picture

You are in our thoughts...

I'm am devastated to hear of your condition. I hope for the best as the ALS progresses and wish that I were a doctor to provide that medical breakthrough that would help cure or reduce the impact of your disease. Though were I a doctor I won't have had the pleasure of working with you in the issue queue and contributing along side you.

Thank you for your contributions and for the work you continue to do. You are in our thoughts.

- Mike

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.