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I was just putting my son Elliot to bed, holding him with his head on my shoulder and smelling his skin for a while.  Definitely one of my favorite things in this world.  Doing this reminded me of the day that everything changed in our house.  It was around May, I think, in 2006 and I was about 5 months pregnant with Henry.  I came home from a trip somewhere and all hell broke loose.  I don’t remember exactly what the fight was about, probably something insignificant.  But it became huge, the second fight in over three years between Ben and I, that eventually led to him moving out.  In retrospect, it was exactly how things needed to go, but it was unfortunate how it happened all the same.  It has given me tremendous sadness at times, even though I know that it couldn’t have gone any other way.

Ben and I got along really well, especially considering the circumstances:  we were brother and sister, we lived together, we worked together, and he had a debilitating disease where I was his main caregiver.  When I first told Ben he could move in with me, it was supposed to be temporary, he and John would find their own place in a month or two.  None of us had any clue how unrealistic that was and as time went on, we understood it was permanent.  In the three and a half years that we lived together, I never felt like I was sacrificing much.  Of course there were times I got frustrated or angry, but I usually directed that at the rest of my family or the world in general, and we lived in relative peace.  I met my husband and got married during this time, we were one big happy poster family for denial and chaos.  As strange as it may have seemed to the outside world, we had a blast and the hard times were always manageable.  There were a lot of people around to help and we made it work.

It wasn’t until I became pregnant with Henry that the reality hit me.  It was the day after this huge fight between Ben and I, and I left the house.  I just couldn’t be around him, he said some terrible things, I said some terrible things….luckily I have a poor memory for certain aspects of my life and this is one I am fine with forgetting.  I knew that Tim would be there to look after him, he did that all the time, so I left and went to a friend’s house.  Brittany was at work and Michael was studying for an exam, so I told him to go out and study and I would watch Ava, their 1 year-old.  I didn’t know what else to do – life had come to a complete halt and I was pissed.

It was while I held Ava before her nap that the true picture of what was happening surfaced.  I have to say that Ben was always supportive of me living my life, and that included getting married and then pregnant.  We were all very clear that there wasn’t to be any guilt, and we all had lives to live, regardless of what Ben’s fate looked like.  But while Ava slept on my chest, and I listened to her breathe, I realized how the one person who would sacrifice the most would be the baby growing in my belly.  I thought about the various directions I was pulled, and how little time I had to sit and to breathe, and to listen.  I wasn’t sure how I could be a decent mother in that situation.  In hindsight, we were all idiots for even thinking it was realistic or fair, but I give us credit for suggesting the notion.

After that moment, holding Ava, I knew that it had to change.  I knew that I had to leave Chicago and make a life with my family in a new place, for a variety of reasons emotional, spiritual and financial.  It was horrible in so many ways – the hired caregivers that couldn’t even take care of themselves, let alone a severely disabled man and a 6 year-old; the immense financial burden on my parents who paid for all of Ben’s needs; and the feeling of helplessness, I could never make ALS go away, but I felt like I was at least helpful.  Even with all the bad feelings, I knew that it was the right decision.  Ben would have known that I was voluntarily holding my life back if I didn’t move away, and he would have also known it was because of him.

Ben moved out a few months after our fight, and eventually he found a wonderful person named Elizabeth that took care of him and John and she feels like a sister to me now.  Drew and I moved to North Carolina when Henry was six weeks old, and now we have Elliot too.  Our life is easier and happier here, giving us the opportunities we didn’t have in Chicago and a place to evolve for a while.  All in all, it worked out ok but not without a great deal of difficulty and frustration.

I think about Paul Cox, in the movie, saying that “ALS destroys entire families” and I am glad we didn’t let that happen to us.  There were moments that I definitely thought it possible, but I know that we are all stronger and better people for it.  I know that if Ben were here now, he would be sitting there, with that ridiculous grin he had, and nodding his head like he knew it all along.  Like he knew that we would all come out of this ok.  I guess he would be right.

It was wonderful, so full of passion, family life, ventures in pursuit of cures and friends, etc.,  Ben’s son was adorable and so grown up.  I cried so much.  This ALS is so very frightening.  -Helen

My husband, Mike, and I sat down to watch it and were filled with so much admiration for both Ben and yourself.  Mike found it extremely grueling as he is the caregiver rather than the PALS so finds it difficult to see the realities in store for me,  whereas I found it totally inspiring as I felt Ben was showing me the way ahead. I was particularly interested he followed up the stem cell option, something  I have often speculated about.  His coverage of the issue made me knock it on the head once and for all – until there is enough evidence to show it is actually worthwhile.  I think one of the most moving parts of the film was the long climb near the end of the film – daunting for someone fully fit, let alone someone with weakened limbs.  It showed Ben’s tremendous spirit and I felt filled with an enormous sense of achievement on his behalf when he succeeded. – Karen

It is heart wrenching and heart warming and wonderful, all at the same time. We cried and laughed with you.  Ben’s film touched on so many deep existential questions we have – I wish I could view our lives from a higher plane and be a smiling Sisyphus. – Ana

Your brother’s film was beautiful and clearly inspiring and should be seen by everyone. Your tireless effort to bring the film to all those who wish to be enlightened is a tribute to your brother’s life and will surely be successful in delivering the message to others that more research in these areas is needed and must continue. – Michael

I am fortunate at this point that I do not have ALS.  But two of my maternal aunts did and each lived about two years from diagnoses.  One chose to have everything possible done, the other chose not to have anything done.  When the second one began to have symptoms (this is during the 1970’s) she was told that two people in one family would not be possible. However, that opinion has obviously changed.  It was a terrible loss for all of us.  All the sisters are gone now and so far it has not shown up in the family since.  My heart goes out to all who suffer from this illness and hold hope that some day a cure will be found. – Judy

I spoke to a woman the other day who was asking for a copy of the movie, her sister has ALS.  She told me that she went to a support group in her local area and someone there told her not to see Indestructible because she thought it was “too harsh”.  Now I am the first person to acknowledge that this film is not for everyone.  I understand that it takes some time to actually put the disc in the DVD player and press play.  But to tell someone that it’s too harsh is ridiculous.  This disease is harsh.  To imply that it is anything but harsh is just sugar-coating it.  Let people decide for themselves.  This movie is an honest portrayal, something the public, ALS patients, caregivers, doctors, nurses, educators, students, anyone with a respect for human life should all see.  This is becoming an epidemic, and it is going to get a lot worse before it gets better.  Why wait for that to happen?  Why not start paying attention now?  What if we started to care about things because we should, because it’s the right thing to do.  This is one of those things and it affects us all.  There are many things in the world to care about, our planet, our health, our money, it is all important.  You can pick one thing, one cause.  Or, you can care about all of it, that’s an option too.  Maybe diseases like this are on the rise because life is more complicated and we are struggling to keep up with the evolution of the world.  Times are more stressful and stress has proven to have an impact on disease.  Our choices have to reflect the direction our world is going.

People will figure it out eventually; they will have no choice.   As soon as we can acknowledge our mortality, we will be able to live in a better world.  When will we all wake up and say, today might be my last, how am I going to spend it?  Some people will choose to steal, harm themselves or other people, and some people will say, what can I contribute today?  What kind of footprint am I leaving on this earth?  What types of relationships do I have?  When you can ask those questions and feel good about the answers, you will get it.  It’s not to say that every moment is perfect, or that there aren’t things beyond our control that have a negative impact.  It is the way we react that matters.

By the way, the more of you who buy the DVD, the more ALS patients we can send it to for free.  They make great gifts!  Click here to buy now!