ALS Brings Us Together, But We Make Our Own Stories

ALS dignosees group pic (640x427)

I’ve been firmly on the fence about whether or not to see The Theory of Everything (the movie on the life of Stephen Hawking).  I was worried that this film might strike a little too close to home, or, worried that it might not strike close enough to home, until today when Amy and I had lunch with three other ALS diagnosees.  I was reminded that, though we share a diagnosis, we are all having our own completely unique experience. I realized that I have nothing to fear from anyone else’s story–no one’s story is MY story.

I value these dear friends who are going through an amazingly deep trial and doing so with grace that I am personally inspired by.  We have banded together; a group that may not have otherwise come together.  It’s a club that we are a part of but wouldn’t choose for anyone.  Our ALS diagnosis is our commonality, but we each have different strengths and stories.  We can laugh, and cry and lean on each other.  

So, I came home excited to see The Theory of Everything.  I rented the movie online, and watched it all by myself. I liked this movie. It did better than most at showing the complexity of a trial. It also touched on many of the topics I find myself thinking about every day: God, time, and family.

I am convinced through my own experience that we really have no idea what others are experiencing at any given moment.  We assume, but don’t really have the ability to be in someone’s head or emotions, or fears or relief.  Some of what we assume about each other is just plain wrong. I’ve been caught off guard more than once when someone comes up to me in tears, assuming I am suffering and wanting to comfort me, and I think to myself, “Man, what can I tell this person? Thank you? That I haven’t struggled with what they assume I am struggling with for years? That I think their struggles are comparable to mine? That, in reality, I’m quite content, or hungry, or in the mood to be distracted?”

Sometimes, when I am tired, I simply don’t want to receive any more empathy.  I don’t want to comfort anyone who is suffering on my behalf.  I don’t want to be the false high-standard for anyone’s faith or anyone’s inspiration. And then there are the times when I feel like light pours in and I am able to go give and receive, to see the smallness of my fears, and the beauty of the empathy offered me.

Thoughts from Feb 2015,  by Seth Christensen

Promising ALS Copper-ATSM Treatments in Mice

New ALS research results from Oregon State University scientists may offer hope for a new kind of treatment for ALS.  The treatment uses a chemical compound called copper-ATSM.  The study recently published in the journal of Neurobiology of Disease shows significant results in treating laboratory mice with ALS.  The treatment has not been tested yet in humans.

The copper-ATSM treatments were able to extend the life of mice for 20 months, which is nearly a full lifespan for the genetically engineered ALS mice.  In contrast, the mice without treatment died within 8-13 days of birth.

The study also showed that progression of the motor neuron disease could be restarted and stopped by withholding or giving the copper-ATSM treatments.  The mice seemed to respond within hours of treatment.   

Joseph S Beckman, Ph.D with OSU’s Linus Pauling Institute has been studying ALS for 23 years.  He patterned this study after promising work being done at the University of Melbourne.  He knew that copper plays an important role in ALS, but it must be delivered  in the right way.  

Copper nutritional supplements cannot be used to treating ALS symptoms.  The published study states, “Copper supplements can damage the liver and are generally toxic at high dosages.”  But the copper-ATSM compound, used in this case, can prevent copper from being released in most tissues, and only be delivered to to hypoxic tissues, or areas with low oxygen supply.  The copper-ATSM can cross the blood-brain barrier and release the copper to cells with damaged mitochondria.

Although copper-ATSM has not been tried as a treatment in ALS patients, it is used as a PET-imaging agent for hypoxic tumors in humans.  The copper-ATSM has a low toxicity and can penetrate to the central nervous system within minutes.  

If results in humans are similar to the results seem in mice, this would be a huge breakthrough for the ALS community.  ALS is a condition that progressively degenerates nerve cells that control all muscle movement.  It is always fatal and most patients are told they have 3-5 years to live after diagnosis.  Each year 3,000-4,000 people are newly diagnosed with ALS in the U.S.

It typically takes 10 years for a pharmaceutical drug to be developed and ready for patients. The process starts in laboratory test tubes, progresses to testing in animal models such as mice, then goes to human testing.  The next step for the copper-ATSM treatments would be to 1) optimize the copper-ATSM dosage in mice, and 2) verify treatment effectiveness in mice, through repeated studies using the same protocol.  After these steps the treatment could proceed to human clinical trials.

This copper-ATSM treatment has such promising results for halting the progression of ALS.  It will no doubt be watched closely and hopefully by ALS patients and families.  .


The full study seen in Neurobiology of Disease is titled: Copper delivery to the CNS by CuATSM effectively treats motor neuron disease in SOCG93A mice co-expressing the Copper-Chaperone-for-SOD. 

Gleason’s ALS Film will Change Lives

Steve Gleason, wife Michel, and son Rivers star in "Gleason."

Steve Gleason, wife Michel, and son Rivers star in “Gleason.”

Former NFL football player Steve Gleason was diagnosed with ALS at age 34, and within weeks found out his wife was pregnant with their first child.  He started making a video blog of himself.  

This is intended to be a gift for you, my child who I have not yet met.  My intention is to pass on as much of who I am as I possibly can, to you,” says Steve in his first entry.  The movie follows him over a four year period.

Seth Christensen is another ALS patient, and founder of ALS Crowd Foundation.  He was 35 years old when he was diagnosed with ALS, and had four children ages 10, 7, 3, and 6 months.  He knows the paralyzing fear that comes with such a serious diagnosis, and the emotions and worries for his family.  ALS is a disease that progressively degenerates nerve cells that control all muscle movement.  Most patients are told they have 3-5 years to live.  

Seth recently attended the premier of “Gleason” at the Sundance film festival in Park City, UT.  The full length documentary shows very personal moments in Steve Gleason’s daily struggles with his declining physical body, his desire to get his relationships in order, and his attempts to be the best father he can possible be.  

“It was very surreal; the feeling that I was actually watching myself,” says Seth.  “It felt powerful to see that someone else could relate.  I’m sure a lot of people can relate.  I think we all struggle.  But to see someone like me, that was powerful!”

Gleason took that to heart that he needed to live life as fully as one possibly can.  Seth agrees that it has made his family live very differently. He doesn’t take time for granted, but instead chooses to live intentionally.

Seth and Michel exchange their favorite lines from the movie.

Seth and Michel exchange their favorite lines from the movie.

The film also explored the complex challenge for a caregiver to balance the rest of their life.  In Steve Gleason’s case, it is his wife Michel, who is adjusting to her new life of motherhood.  She was clear that she was not trying to be known as a saint.  She was just doing what needs to be done for her family.  In Seth’s case, he sees his wife Amy going through those same challenges.  

“It really shows how complex something like this can be on relationships, faith, and money.  Even the things that Amy and I fight about, they fought about.The emotions were spot on,” says Seth.

The theatrical rights to “Gleason” were purchased by Amazon Studios.  The film will be  co-released in theatres with Open Road Films, although a release date has not been announced.

Christensen hopes this film will be the catalyst for the community to finally come together and work on that shared vision of a cure for ALS.  He believes it will be the second biggest thing that has ever happened to the ALS community; second only to the ice-bucket challenge that swept social media and provided a boost to fundraising in 2014.  

“This film is really beautifully done,” says Seth Christensen.  “It will change lives.”

Seth thanks director Clay Tweel for such an insightful documentary.

Seth thanks director Clay Tweel for such an insightful documentary.