Lou Gehrig's Disease: After a decade of ALS facts in my head and statistics in my very DNA, you'd think I'd be able to dissect the disease in layman's terms in one short sentence. But I can't! Lou Gehrig's Disease is literally the WORST disease I've ever seen, and it's not an easy thing to describe to someone, because the very words give me anxiety.

So...for those people who want a clean version, don't ask me. Because, although I wasn't the one lying in that bed for over a year, miserable in my own skin with my mind intact and WHOLE...I DID watch that person do it. She was my mother. My YOUNG, incredibly BRAVE, mother. She was 41 when she was diagnosed with ALS. My mom was always a busy person, but when she started suffering back pain and refused to sit in the car for long periods of time, we knew something was up. My mom had always been the first one to get excited about a road trip!!

I made a trip up the Oregon Coast to Seaside and I asked my mom to drive up the coast and meet me. She told me her back could not handle that road trip and that it would start going in to spasms if she sat and the cramps were too bad to enjoy anything anymore. My parents started talking about getting some testing done to see what was going on regarding her muscles. I was 21, fresh out of the Navy and newly pregnant with my first child when my father took my mom up to Oregon Health and Science University (OHSU) in Portland, Oregon for some neurological tests. We, or I...assumed it would be MS. That....I was prepared for.

My mother endured three days of testing which included an electromyogram. This test measures the small electrical signals in muscles when a tiny electrode needle is inserted into a muscle, like my mother's arm. It was very emotionally stressful on my parents. She also suffered a Nerve Conduction Study. After these tests were done, my dad called me and told me he thought my mom had Multiple Sclerosis or MS. I was slightly relieved, because I'd been reading up on it and all I knew was that it wasn't terminal. MS is a harsh sentence and a very expensive disease to maintain, but at least my mother would be alive. I hung up the phone at the ranch, and told my four siblings that I thought mom would be okay with our help. We celebrated my mom's life that night by crawling out onto the roof in the cold January air and watched the stars and satelites til late. Our conversation that night did not include death.

On the third day of testing, my mother had an MRI, to rule out all other neurological diseases. What I didn't find out for about twelve hours was this: the MRI ruled out everything, INCLUDING MS. My mother had the Darth Vader of all motor neuron diseases, Amyotrophic Lateral Sclerosis, more commonly knows as Lou Gehrig's Disease. When my father recovered from his initial shock, he placed that life changing phone call to his offspring. My 14 year old sister, Alea answered the phone and the tone in dad's voice must have been somber because she was white as a ghost as she handed the phone over to me. I pressed that old white handset harshly to my face and in a few short sentences my own father imprinted onto me the legacy of ALS.

"What is THAT," I asked him.

He was silent. "You know that old PDR I have in the bookcase, Kass?" he quietly asked. I knew. I hung up the phone and practically flew to the bookcase, looking for that old Physician's Desk Reference that my dad was constantly using to diagnosis little insignificant family illnesses. This is dumb, I thought. Why couldn't he just have SAID. Well, what my dad couldn't SAY, was plain as day in black and white, about one minute later. I sat. For an HOUR. Staring at the textbook definition. "a neurodegenerative disorder that is usually fatal. It frequently results in death from respitory failure or related complications around two - five years after diagnosis." And yes, that was typed here from a decade old MEMORY that will forever be with me.

In the months to come I would sit on her bed, holding my infant son, as my mother would hold out her arm to me and tell me to 'watch' the muscles dancing up and down her arms. It was the atrophy, or the hardening of the muscles. She thought it was funny. She would giggle uncontrollably, emotions out of whack, and tell me her body was 'freaking out'. I would laugh, not knowing that just a short 14 months later, I'd be standing at the foot of her small white casket, melting into myself. As the months went by, she had trouble walking, her back would hurt, the muscles were slowly disappearing, she was in a constant state of discomfort from the cramping. She was 95 pounds, soaking wet, her entire life, the only time she was over 100 pounds was when she was holding a plate of food or pregnant with one of her children. People used to joke that she could use a tortilla for a blanket, she was so LITTLE!! So the disease known as Lou Gehrig's which is known for eating away at the muscles of the body, really had no muscles to work on.

She went fast, when in reality, most people with ALS can last three to five years...sometimes up to 20 with the rare cases. I even know a man that has been diagnosed for ten years and he still can walk without benefit of a cane!! My mother, that petite woman with a fiery soul, lasted a mere 18 months from her diagnosis. In the early weeks after her diagnosis, she suffered a hard but quick depression. She locked herself in her room, not speaking to anyone. She would not take phone calls. It seemed nothing could comfort her, except her faith which she wore like a bright red scarf thrown back across her shoulders. She would cry softly, and we'd stand on the other side of her bedroom door listening, with identical stricken looks on our faces. My dad kept himself busy, always in and out of her room to sit with her, pray with her.

She came out a few weeks later, okay. That was that, "it is what it is," she said, and the grieving was tucked away. But I do remember her grief being triggered by certain things in those first few weeks and months of her diagnosis, and she would run crying to her room and even with the door shut, we could hear her moaning, "I don't want to die, please God don't take me." It was horrible to hear your own mother so afraid. My mother. She'd always been SO strong, it was almost a foreign thing, this fear we saw in her. I'd creep to the door and knock, telling her I just wanted to sit with her. She would open the door and cry all over again. You know, that kind of crying that is only done when someone shows you a kindness. Like when you think you're okay, but then someone hugs you, and you fall apart? That kind. She'd tell me that she wasn't afraid of DYING as much as she was afraid of MISSING US. She knew that she'd have to leave her children, her husband, her home, her family. Her grief was for US more than for herself. She suffered a homesickness for us, for each of us it was different. For her three boys, it was a sadness that was wrapped around thoughts of them growing up without her. Her baby was only 11 years old, how could she leave him?? She had four children at home to take care of, how could this HAPPEN to her!! She was about to become a grandmother for the FIRST TIME, she needed MORE time. More time.

One weekday, my mom and I went shopping in Fred Meyer for some groceries. This was around the time in her disease when she was fast losing control of alot of muscles, she couldn't speak very well at all, and she walked with a gait that looked like a limping colt. Skinny legs, size double zero. We went inside, fast foward to the freezer section, I had newborn Gabe strapped in a baby sling, and was watching mom fill her arms with frozen orange juices. Too many. She couldn't grasp any of them. They went FLYING all over the place. Uncontrollable laughter followed. This was her first episode of that. Lou Gehrig's patients are known for their uncontrollable laughing and crying. I never did understand what that meant when I read about it, until I witnessed my mother experiencing it. It's part muscle control, and part emotions OUT of control. Just uncontrollable and WILD laughter..it rang through Fred Meyer's...and she couldn't stop.

I had to take her out of the store, she was gasping for air, people wanted to call the perimedics, I kept laughing, telling everyone, 'she's okay, she has ALS.' No one knew what that meant. "Is she having a heart attack?" "NO GODDAMN IT, IT'S ALS!!!" And even though my mom was gasping for air with her lungs in spasms, I could still recognize an amused glint in her eyes that meant: Stop cursing Kassi. HAHA! My mother, feisty til the end.

That was our last shopping trip. She cried uncontrollably the whole way to Toledo. Then told me to turn back to Newport. She wanted to see the ocean. Back we went, to Nye Beach. We sat in the car for a while, til she could breath again, then she asked if she could hold her grandson in her lap. She was terrified of holding him, her muscles in her arms, fingers, hands, shoulders...none of them worked. But he was sleeping, and that's what she did...she held him on her knee's. Quietly breathing for the first time in hours, she watched her first grandchild sleep through her horrifying disease. If only I could have slept through it. If only my mom could have slept through it. But she didn't. She was awake, aware, and terrified of it.

As the disease progressed, my mom became a little obsessed with finding a way to a miracle. She became caught up in a prayer group in Newport that promised healing through the Lord. One woman in particular, told everyone that the Holy Spirit spoke to her and my mom would be healed. I went to one of these prayer meetings, hope in my mom's eyes gleaming. The women there were convinced that speaking in tongues would prove she would be healed. After a few months of this, and as the disease started to take it's toll, my mom started to accept Lou Gehrig's. To this day, a decade later, some of those women still can NOT meet me in the eyes. My mom started drinking a vitamin drink, it was filled with Vitamin E which she believed would slow memory loss, Vitamin A helped with the repairing of the body and regrowth of good cells, and every Vitamin B you can imagine. The Vitamin B group is believed to help fight ALS through ways I cannot explain here, it would just made it too confusing. But the drink she consumed daily, involved alot of money and yes I tried it, it was a disgusting mixture. And no, it did nothing to help.

In October of 1996, I flew to Washington DC with my son, to set up house as a newly wed. She came out onto the porch of the farmhouse, stood leaning against the doorframe. She waved goodbye and turned to go before I was even in the car, she was hiding her tears. It was the last time I would ever see her on her feet. Soon, I would speak to my mother for the last time on the telephone. It was Halloween of 1997. She couldn't use her voice to form words after that. Imagine hearing your mother, whom you've always known to be strong and highly intelligent, speak as though she were mentally challenged. It was something I'll never forget...and I thank God I was on the other end of a telephone, three thousand miles away, because the pain and fear in my eyes would have made my mom cry.

The new year 1998 came and went. Again, I was on my way to Oregon to be with my mom. I brought my pregnant belly, my unborn Jewel and my 10 month old son, Gabe. He was the light of my mother's last few months. She lay in that easy chair and he would crawl all over her skinny body, not minding the bones and fading light in her eyes. He loved her red painted nails, she loved that baby boy. I remember in the dead of night, my dad would come up the stairs of that old farmhouse in his silent way and stand at my door telling me to 'wake up, your mother needs you.' He would be on his way out into the predawn to feed the cows, and my mother could not bare to be left alone in her misery, in the dark. I would massage her back, she would feel my unborn child move in my womb and cry herself to sleep. She'd wake in rages, screaming at the disease...it would scare my younger siblings who were only in elementary school at the time. The disease scared them into silence, they'd creep throughout the house, doing their chores, their homework, never laughing very loud...escaping into whatever held their attention. There were four of them. Alea, Jeremy, Jonathan and Nicholas...all of us so young!! They'd come in from school at 4pm, and each of them would spend some time with mom, she was never alone, there were too many of us, haha! They'd perch on her bed, jabbering about school, friends, homework. Mom would ask about the pets, tell Alea and Jeremy to BE GOOD, and tell Jonathan and Nicholas to QUIT GOOFING AROUND, LISTEN TO DAD. I'd often find her sitting with tears in her eyes, watching an old movie. She missed her children. At this point, my mom was making her way into a weight that some of us haven't seen since we were 3rd graders. The muscles in her throat would not work, except to swallow sweet tea. Never plain water or orange juice or even milk shakes. She'd choke. She could only swallow sweet tea drank from a straw, the homemade Southern kind that my grandma Jo taught us to make. I think my mom was regressing back into her memories of childhood in certain ways, like only drinking that sweet tea her mother made. Or listening to her John Denver cassette tapes. To this day, 'This Old Guitar" will take me to a place that no other song ever will. Hearing James Taylor sing his "Handy Man" makes me cry, remembering my 60 pound mother closing her eyes, finding comfort in the song and swaying to the chorus. She found a comfort in music that not even morphine could take her to. But she found a misery in Lou Gehrig's Disease that seemed straight out of a Stephen King novel, one in particular that still haunts my nightmares. The worst misery was in the way that she starved to death. The muscles in her throat betraying her, leaving her unable to swallow sweet tea after a while. Her bedroom was positioned right next to the kitchen, it was the only room on the lower level. She suffered the smells of roasts, and steaks, and apple pies...because her five children were alive and well, and they had growing appetites that did not suffer. The worst memory of my mom will be of her lying in her bed...sobbing. She was so hungry, and couldn't eat. She couldn't talk. She could only communicate on those children's toys, the ones with magnetized pencils, called MagnaDoodle's. My mother wrote her needs and wants on those MagnaDoodle's. I use that in plural, because my fiesty mother went through many. She broke quite a few in her frustration of not being able to get her point across. She couldn't grasp the pencil most days, had to fist it. These are some of the things she wrote: PAINT MY NAILS? GIVE ME MY JEWELRY BOX. YOU'RE GOING TO HAVE A BABYGIRL, KASSI. (and yes, I did, just two months after she died.) I WANT TO GO HOME. JAMES TAYLOR. JOHN DENVER. XMAS MUSIC (in May?? we'd ask?) YES NOW!!! and she'd beat the MagnaDoodle until it cracked. Lou Gehrig's took her muscles and her ability to speak, to eat, to breathe well...but it did NOT take her mind - behind those beautiful eyes was a brilliant mind that was shocked at the way ALS took her life away. My dad hung up that last cracked MagnaDoodle in the barn and for a year or two, maybe more....it hung there, a reminder of my mom, we all used it to write I MISS YOU MOM. I LOVE YOU MOM. My mom refused life support, her living will stated her wishes, which included not even an IV to help with dehydration. At the time, I was VERY angry, I could not figure out why she would want to die so horribly. But now I realize that she just wanted to DIE. To get it over with. Please DON'T prolong it, was what she meant. In 1997 there were no known treatments, not like there is today. Of course, there still is no cure, but there are drugs to prolong the disease. Back in 1997 and 1998, there was only MORPHINE. And Valium.  Baclofen.  Atropine.  All of these were given as suppositories. Yep.  ALS even took my mother's dignity.  In the last months, she was drooling, choking, raging and crying.  When she wasn't crying, her emotions were like a roller coaster. They went from wanting to give away every piece of her jewelry to a HOSPICE worker, to trying to throw herself off the bed, because she wanted to see her mama in California. TAKE ME TO CALIFORNIA she'd scream in her slurred voice. I'd hide around the corner, clutching my unborn child, screaming silently at God to help my mother. I'd throw myself on her bed, on top of her, to stop her from throwing herself off the bed. I'd hold her, skin and bones poking my body, she wouldn't stop shaking, she'd choke on her own cries. I'd say the Rosary so she could hear me speaking, and it would calm her down. My sister Alea would come and sit on the bed and just talk and talk and talk....hearing  Alea, my mom would drift into sleep. Time for her morphine. She started sleeping for days.  The body's miraculous way of dealing with stress, of survival. Sleep enabled her to escape from the hunger, from the pain of her muscles spasming and cramping. She woke up one day and motioned for her MagnaDoodle. GO HOME TO DC, she wrote. TAKE BABY GABE TO SEE HIS DADDY, I told her "NO, I'm not leaving you, mama!" But she would only nod her head, and there was no arguing with her. I was five months pregnant. So I booked a flight in late May 1998, for a return trip home to DC to see Josh, thinking I'd come back in a few weeks. How nieve I was. Maybe blessedly so. The morning I left for the Portland Airport, she was wide awake. I sat baby Gabe on her lap, and she wrapped her hands, which by now the disease had turned into claws, around her grandbaby. Her hazel eyes were HUGE, pools of sorrow, of lonliness, of pain, of LOVE. She smelled of death, of suffering. But she was my mother and I gathered her into my arms and breathed in every scent, felt every tear, every muscle cramp. Felt her struggle with her breaths, felt her heart with it's startling power...beat with a love that has never touched me again. A mother's love. I said goodbye with surprising strength. She had bestowed on me a great strength, my mother. The grace of her suffering had taught me a lesson, and my grief was nothing compared to hers. I told her I'd see her in July, that I'd fly no matter how big my unborn child made me! She laughed, a gutteral version of her once sparkling giggle. Somehow I made it outside and to the car where my family was waiting. I never did break down. My mother  was stoic, grace without movement. To paraphrase Hemingway, "it's not the dying but the manner of it." I never saw my mother alive again. She died at the age of 44, just two months later. We buried her two weeks before her 45th birthday, and even ten years later…the stark pain of it drifts against our memories  and ALS is still a bitter battle.

Today, we introduce you to Ben Byer, former actor, producer and film-maker from Chicago. After being diagnosed with ALS in 2002, Ben began documenting his life on film.  We are grateful to Ben for using his talents in film to communicate his experience and through this medium, offer others the chance to learn from his life.

*Be Well!

Team 2175

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About Ben Byer

Ben Byer was born in Chicago in 1971.  He was diagnosed with ALS in 2002.  During the 31 years between these two occasions he has done many things, mostly legal.  After graduating from Evanston Township High School he studied Journalism at Indiana University and Film Theory at The University of Paris where he made short films on 8mm.  A job as a translator at the Cannes Film Festival led him to Hollywood where he worked for a producer of B-movies.  Returning to Chicago he took up acting and has since performed on many of that city's notable stages including Steppenwolf Theatre, Organic Theatre, Trap Door Theatre, European Repertory Company, Circle Theatre, Café Voltaire and the Staddschowburg Theatre in Amsterdam.  Like all struggling actors he left for Los Angeles and found himself selling beef out of the back of a truck.  This unsavory experience inspired him to write his first play, Take it Deep, which was produced to much success shortly before being diagnosed with a fatal neurodegenerative disease.  Unable to write or perform, Ben turned his attention towards film directing, a vocation more suited to the disabled.  In 2003 he co-founded ALS Film Fund with his sister Rebeccah Rush to produce original works of art, whether film, theatre, sculpture or other intended to create positive change for ALS sufferers around the world.  Ben Byer died of ALS on July 3, 2008.

Click Here to access the Indestructible Homepage & Film Trailer

About the Film

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.

The Film Makers

Director's Statement

“In September of 2002, at 31 years of age, I was diagnosed with ALS, a neuro-degenerative disease that kills 90% of its victims within five years. At the time, I was working as a playwright and actor in Chicago, running a painting company and changing my son’s diapers. Nine months later I began to make a documentary film chronicling my new life, not one I had chosen and unlike anything I ever could have imagined. Traveling by myself and then with a small crew we filmed the isolated world of ALS; interviewing patients and their families, medical professionals, scientists, religious figures and almost anyone we could find. I wanted to know (perhaps naively), “What does it all mean?”

Indestructible is an attempt to understand and accept the reality of a mysterious and deadly disease that has brought science to its knees, an illness that is a paradigm for life’s ultimate challenges. My personal story in the film, and that of every ALS patient, follows this frightening path into an uncertain future. To show the broad and difficult landscape of medicine for ALS, or lack thereof, we have documented mainstream approaches, controversial stem cell surgeries, Chinese herbal treatments, vitamin supplements, vibrating beds, Yoga, and almost anything that might stop the progression of this horrific killer.

My initial purpose in making this film was to share the extraordinary moments, both dark and light, of a life with ALS, and there are many. I now believe Indestructible will be a catalyst, and mark a turning point for the millions who have and will suffer the wrath of this elusive beast, bringing us one step closer to what every sick person wants - a cure. Indestructible has at times provided answers to my questions, if only momentarily, and they are no substitute for my health. In the meantime, I will continue to search. When we unlock the secrets of ALS we will better understand not only neuro-degeneration, but also aging, environment, psychology, spirituality, and what it truly means to be both alive and facing mortality every day.”

-BenByer
March 2004

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Consider donating $1 to 2175 for ALS today. Funds go to benefit the DC/VA/MD Chapter of the ALS Association. Thank you!

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Today - Friday, November 28th - we bring you the story of Minna Mettin-Kekalainen. 

“I like to associate myself with people who don’t believe in limitations,” she said.

*Embrace the day-

and Be Well,

Team 2175

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Paralysis no Limit for Skydiver

Date Published, Nov. 24, 2008

To access the original article, please click here. 

By Greater Sudbury Northern Life Reporter Sabrina Byrnes

“When I was little ... I actually believed that people learn to fly as they grow up,” said Minna Mettin-Kekalainen. More than a year ago, the 42-year-old Sudbury woman made her childhood dreams a reality when she took on adaptive skydiving.

“I had such a desire to fly, I felt it was something that would happen. My grandmother said, ‘when you get older, you will realize that people cannot fly’,” she said.

“Well, I’m older now and I do fly, so I still don’t understand what she was trying to tell me.”

Mettin-Kekalainen had the dream of skydiving since she was five years old, and she has shown that if one wants something badly enough, one can make it happen.

“‘Can’t’ is not in my vocabulary,” she said. “If you just eliminate that word out of your vocabulary then you will have a better life.”

The single mother of two teenagers was paralyzed from the waist down many years ago after a motorcycle accident. The accident also resulted in an acute brain injury. In 2005, she was diagnosed with Amyotrophic lateral sclerosis (ALS, aka Lou Gehrig’s disease), which is a devastating neurodegenerative disease.

Before her accident, Mettin-Kekalainen was a competitive hockey player and motocross racer. After her accident, many years passed before she was reintroduced into sports, which brought her back into a healthy and active lifestyle, building her courage and self-esteem.

She’s been involved with many sports and also co-founded the adaptive rowing program at the Sudbury Rowing Club. It was there her path to skydiving took root.

While at the canoe club, Mettin-Kekalainen met a windsurfing instructor and asked if he could teach her his sport. He said he would see what they could do, and she thought this was someone worth talking to.

“I like to associate myself with people who don’t believe in limitations,” she said.

The subject of the Parachute School of Toronto came up in their conversation and they both had the same thought — they were going skydiving. The next day they drove down south for what was Mettin-Kekalainen’s first tandem skydiving experience on Aug. 7, 2007.

“I remember my first thoughts were perhaps a bit morbid, (like) this is what it must feel like to be dead, ... just peacefully floating there in this space, and everything is beautiful and calm and feels like everything is quiet — despite the fact that if you’re actually paying attention to your ears, it’s extremely loud, like a jet engine roaring by,” she said, reminiscing.

“When the parachute opened, my first thought was ‘it’s done, it’s over’ — a slight moment of disappointment until I realized it was fun to fly the parachute, as well,” she added.

Mettin-Kekalainen noted there was great support in the skydiving community.

“In skydiving, we literally trust our life with complete strangers,” she said,  adding they check each other’s equipment.

“It makes it a sport that we somehow feel close and responsible for each other in more areas of life than just in the plane and in the sky,” she said.

In April, she went to New Hampshire to experience a wind tunnel — a simulated free-fall experience in a controlled environment — to ensure she was able to do a free fall jump, before actually jumping out of the plane solo.

On April 26, Mettin-Kekalainen experienced her first solo jump.

That day, Mettin-Kekalainen was the first paralyzed person with no prior skydiving experience, to successfully complete a solo free fall jump.

“It truly was the most liberating and beautiful feeling I’ve ever felt. I completely felt whole, like there was nothing different about me. Up there, when I’m falling, you would never know I’m a person that’s in a wheelchair. I felt from that first moment on that I can do all the same things ... if I  work at it. I really felt ‘normal,’ I felt like anyone else,” she said, smiling.

Because her range of motion is limited, she needed the balance of a person on each side of her so she could pull the cord to release the parachute. Without them, she would flip upside down when she reached back for the chord.

A developer in South Africa sent her a pair of adaptive pants to wear while jumping solo. The pants have a strap she pulls, which raises her legs so she is able to land safely.

“Sporting activities ... are extremely therapeutic, not just physically, but psychologically and emotionally. People with disabilities are not included in society to the extent we would like to be in most areas, but sport is one of those areas that is more accessible now and it’s definitely something that is very self-satisfying for all people.”

Mettin-Kekal ]]> http://www.2175forals.com/blogs/bd/2008/11/28/Today.SQT.s-Hero%3A-Minna-Mettin.DSH.Kekalainen/ http://www.2175forals.com/blogs/bd/2008/11/28/Today.SQT.s-Hero%3A-Minna-Mettin.DSH.Kekalainen/ Thu, 27 Nov 2008 05:31:00 -0600 Normal 0 false false false EN-US X-NONE X-NONE MicrosoftInternetExplorer4

Happy Thanksgiving! Our Hero today is Patrick O’Brien, whose story was brought to our attention by Michele; she says,

“Patrick is one of the coolest guys – both talented and well-known for his amazing videos. Visit his site http://www.patrickobrienfoundation.org  Patrick O'Brien was 30 years old when he noticed involuntary shaking in his leg. The successful film maker was soon diagnosed with ALS. As a film maker for MTV, VH1 and many others, he had just begun his search for the perfect story about the disabled, when he decided to turn the camera on himself...”

Patrick, thank you for sharing your story and your incredible talents – we encourage everyone to follow the link at the bottom of the page to view Patrick's work.

To Everyone – a very happy Thanksgiving. Know that you will be on our minds and in our hearts today!

*Be Well,

Team 2175

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About Patrick

Patrick has had a successful commercial career on TV and the web, creating unique stories for Spike TV, AOL, IBM, MTV, MICROSOFT and WARP RECORDS with his own brand of darkly humorous and sometimes controversial films and animations.

His independent projects are seen by millions every year on TV and the internet. Patrick was diagnosed with ALS on May 24, 2005 and it was at this point that he decided to embark on his feature length documentary film, entitled "October 5, 1974?".

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.

About the Film:

Feature length documentary: 75 minutes

Treatment: "Everything Will Be Okay"

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's Trailer and Video Clips
	Patrick O'Brien Foundation

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Please donate $1 to 2175 for ALS today!                                              

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Today, we celebrate Pam. Her story was sent to us by Michele - who learned of 2175 for ALS after her mother, the Director of a support group for PALS, handed her our flier. Michele wrote us at the beginning of September, eager to share stories with us – and we are grateful to be able to share them with you. We hope too to bring you Michele’s story in the days to come too.

Thank you for sharing Michele, and giving others the chance to hear Pam’s story and learn of her selflessness and resolve!

*Be Well,

Team 2175

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“Since our involvement with the ALS community, we have made some amazing friends which I would love to tell you about. The first here is from a woman named Pam - which my sister realized was one of her student’s Mothers from 9 years ago. One of the best Mothers in her 15 years of teaching. She is the inspiration behind our CarnivalforPals, a joy to be with, and if running could find a cure, you would run for days straight if you met her.

We have many friends now who inspire us everyday”

-Michele