Monday, September 28, 2009

Treatment: "Everything Will Be Okay" Feature length documentary: 75 minutes

If you were given 2-5 years to live, what would you do?
My name is Patrick. Sometime during the fall of 2004, I noticed an involuntary shaking in my legs. For a long time the exact cause eluded definition.

On May 24th, 2005, however, I was officially diagnosed with Amyotrophic Lateral Sclerosis (also known as ALS or Lou Gehrig's disease), a terminal disease that results in the progressive degeneration of the nerves and muscles responsible for voluntary movement. It is a fatal and incurable disease. I was 30 years old.
As evidenced by the film segments on this website I have chosen to do something with my illness. Over the course of 2006 and 2007 I will document my journey with ALS on 35mm motion picture film. This challenge has given me a focal point to channel my energies, and will hopefully inspire others to keep moving through their own adversities. At this point in my life my intention is to be at peace with myself, and to pursue my life's work of making a feature film about something which reaches for the truth. All of my adult life, I have been making films - films about unconventional characters, stories about vulnerable souls. Now, in the last years of my life, the film I am making, the character I tried so hard to write all these years, the story which eluded me on paper, is unfolding across my body, inside my nervous system, and in front of my eyes. I have become the character in the film which I have been striving to bring to the screen all these years.

Please help me complete my life's work by donating to the completion of my film. Your contribution will make a difference in the way our government and our world sees this ugly, spirit punishing, insidious illness. By bringing attention to this fatal diagnosis, victims, their families, and their communities will benefit from a shift towards better resources, more accurate healthcare policies, and improved treatment options. By donating now, you will be a founding member and key part of a landmark motion picture about the impact of ALS - what it means to be alive, what it means to die, and what is important in life.

Patrick O'Brien AKA Trans-Fatty Notorious P.O.B. (B.I.G.) check-it, bang-it.

cure ALS from Patrick O'Brien on Vimeo.

Sunday, September 27, 2009

Dear ALS Organizations, Perhaps It's Time For Some New Individual Performance Expectations

This problem first struck me when I checked into a hotel two days into a large ALS conference. After I told the desk clerk that I was with the ALS group and he found my reservation, I asked him if he knew what ALS is. I expected him to come back with, "Lou Gehrig's Disease. They even gave me this nice wristband." He said he didn't know. Two days of working with people who professionally represent the ALS cause and nobody thought to fill the desk clerk in. It could have been the American Llama Society for all he was told. The meeting planners and the individual attendees did not spread the word about ALS.

It's simple. "I'm with the ALS group... Do you know what ALS is?... It's Lou Gehrig's Disease... still don't know the cause... still no cure... still terminal." That's all there is to it.

Yesterday I helped at an ALS walk. The young attendant in the parking garage didn't know what ALS is. The concessionaire on the park grounds didn't know what ALS is. The fellow guarding the adjacent event didn't know what ALS is. Two couples walking through the park didn't know what ALS is. They do now. It's simple.

You can be sure that anybody who works for a business whose name is not quickly identified with its product has a hook to make sure that hotel staffs and catering personnel and car park attendants and security guards know what that product is.

It should be the personal responsibility of everyone engaged in the fight against ALS (especially those who are being paid to do so) to spread the word. Never just say, "ALS." Always say, "ALS... do you know what that is?"

Perhaps on annual performance appraisals there should be an evaluation of some simple things like personal effectiveness at spreading the word.

Friday, September 18, 2009

Nothing Is Easy With ALS

Please watch this video news report:

The short news segment contains an education on ALS that everybody should be required to watch.

  • The patient is a sharp cookie isn't she? Her body is failing, but her words are enlightening, intelligent, and reasonable.
  • Time is a problem, isn't it? People with ALS deal with a ticking clock. They're told not to put things off, yet the world around them throws up obstacles that are taller and wider to someone dealing with ALS.
  • Loved ones try to help, don't they? How wonderful that a family would send a patient and her husband on a trip that would give them a break.
  • Most people don't understand, do they? What airline or insurance company would dismiss the problem of a person with ALS if they really understood the nature of what ALS is.
An investigative reporter in Seattle now understands ALS and has informed a few more people. Please pass this story along to people who don't understand ALS. Perhaps they may be in a position someday to be part of the solution rather than part of the obstacle course.

Perhaps we have all failed to get the word out about ALS effectively.

Society, if you can't cure it, then help them deal with it.

Wednesday, September 9, 2009

Don't Read This!

A software engineer once explained to me that the odds of getting a person to read a helpful file's contents would be much greater if they called it "dontreadme" rather than "readme." Here's hoping that theory on the attractiveness of verboten material holds with this posting.

There is a widow/widower benefit which all of those lost to ALS who served at any time in the U.S. military earned. Time is of the essence to get claims in for those who died in the past. This is the benefit that Dear Abby and Fred Campbell introduced to so many.

I'm not sure why our ALS organizations have not been more public and aggressive in passing this information along to those who may have lost loved ones many years ago.

Dear Abby...

Item from a PVA chapter with details and the importance of September 23...

Please help spread the word to those who may have spent the last five or ten or twenty years trying to forget the vicious Lou Gehrig's Disease that stole a spouse. They may well be entitled to some help.

Saturday, September 5, 2009

One Can Stem Cells Please

A visit with Freddie at Methodist, 03/22/09. Freddie was a world class musician, who had just signed with SONY, when he became ill with ALS - Lou Gehrig's Disease. He was my best friend in the world. He passed away on 04/02/09. RIP Freddie. I love you, man.

A Can of Stem Cells

Thursday, September 3, 2009

Wheelchairs Not Allowed

Benevolence Gone

At a town hall meeting in Red Bank, NJ, rowdy audience members reached a new low: When a woman in a wheelchair with "two incurable auto-immune diseases" dared to ask a question, the crowd promptly shouted her down.

Wednesday, September 2, 2009

No Harm, No Foul?

Medical errors are a hot topic in the media and in the healthcare reform discussions. According to the Wall Street Journal (August 25), up to 98,000 deaths each year are thought to be attributable to medical errors. There is additional expensive waste in our healthcare delivery whenever an avoidable infection is acquired or a test is administered incorrectly.

While people are discussing the topic of medical errors, here is a big question to add to the conversation. If a physician mistakes ALS for something else, is that reported as a medical error, or is it dismissed as "no harm, no foul" since there is no cure or effective treatment for ALS anyway?