March 2006
Self-Portrait of an ALS Patient
By Ben Byer
1. BRAIN: This is the source of all of my problems, but my thought process seems to be intact. Somewhere inside this mass of jelly is a malfunction that is causing the neurons in my body to die off one by one.

2. EYES: One of my first symptoms was a twitching eyelid. I view the world in a different light than I did before. My eyes are the portals through which I experience life, in absence of other parts of my body.

3. NOSE: My sense of smell has diminished. I don't know if this is a symptom or not. Often filled with snot; it is a byproduct of other symptoms that I'm unable to blow or pick my nose effectively.

4. MOUTH: My tongue doesn't work properly, which affects speaking, eating and salivation. The daily grind. Everything goes in or out of my mouth: food, liquid, communication, my work; everything travels through this portal, and it is working less effectively over time.

5. NECK: The muscles are weak, making it difficult to hold my head up. Pain, cracking, weakness. Often, it feels as if my head is on a tethered line held up by some unknown force.

6. SPINE: This is the source of all atrophy. Somewhere inside this cord is a miscommunication, a deviation, a mishap that brings an unstoppable cascade of weakness to my limbs.

7. SHOULDERS: These don't work anymore. I never realized how important my shoulders were until they became relatively useless. They were always just there for me.

8. HEART: Pumping, but a bit faster than before. When I drink a glass of water, my heart-rate picks up. When I walk across the room, stand up, sit down, move left or right, my heart-rate picks up.

9. ARMS: Mostly loose skin. When I was younger, I had biceps. Now I have a remnant of a muscle that is identified as a bicep. I can feel the space between the bones of my forearm.

10. STOMACH: I used to eat like a horse. Now I eat like a bird. My stomach is shrinking.

11. DIAPHRAGM: Weakened – this is where it gets dangerous. Breath is life. This muscle is truly the one that I took for granted. Now, I exercise it daily with every breath I take.

12. LEGS: Stiff, but still working. I thank God every day that my legs are working, albeit a little bit less than they used to, but they are my best friends right now.

13. HANDS: The most useless and useful part of my body. Four and a half years ago, I was painting a house, and I felt a cramp in my hand. I had to peel my fingers back from the brush I was holding. I knew something was wrong.

14. FEET: My yoga instructor says I have good toe action. Maybe that compensates for my loss of balance. Every step I place them where they must be, for if I miss, I will fall like a tree.

15. HAROLD: Still works. My friend, my lover - the keeper of my most private thoughts.


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May 2006
My Brother's Keeper
By Rebeccah Rush

Last week I was in my room when I heard a loud thump from the other side of the apartment. Not sure where it was coming from, it took me a minute or two to find my brother Ben lying on the carpet in a contorted state. Aside from a small wound above the eye and probably a bruised ego, he was fine. When we finally got him to a sitting position, I asked "How did you fall?" His response, in a somewhat perturbed manner was "How the $*@# do you think I fell?", as if it wasn't obvious.

The term “caregiver” bothers me. It bothers me because it puts a clinical perspective on something that is in no way clinical. If I was hired to do this job, I would not mind the word so much. But that is not the case. When Ben moved in a little over three years ago, I had no idea what I was getting myself into. There is a possibility that had I known, I would not have let him move in. I am not his wife, girlfriend, mother, or a hired nurse. I am his sister. There are boundaries to our relationship that are more complex than that of a spouse. If I had known that I would be bathing my brother, I cannot say I would have been so open to the idea. But here we are, three years later, and seeing Ben naked is the least of my worries.

The hardest part of being someone's caregiver, at least for me and my brother, is not the physical duties. Helping Ben eat, dress or bathe is not difficult for me. Driving him on errands is simple. Even helping with his son John is not difficult, it is mostly fun and I feel lucky to have such a great kid in my life. All these things are time-consuming and do deter me from my job as producer of this movie, but they are manageable. It is important to note that I get a lot of help. First, there is my extraordinary husband Drew, who is willing and able to do whatever is necessary without complaint. There is our editor Tim, who helps Ben with lunch and has a penchant for moonlighting as a nanny. There are countless friends, neighbors and family members who are always willing to help out in a pinch or with a meal and never seem to mind that I ask. With as much help as I get, these physical things are manageable and at times surprisingly easy.

What is not always manageable, but probably the most important, is the mental part. This disease, like any terminal disease, is devastating. I can only imagine that when there is some course of treatment, any treatment, it gives a certain amount of purpose to the situation. But with ALS, there is no treatment to stop the progression of the disease. To the patient, to the family, to friends, this is devastating. To watch Ben's health wither away and not be able to do anything is downright toxic. ALS symptoms are severely affected by stress. So while we are trying to keep up with the day-to-day and keep Ben walking and talking, we are trying to do it with as much peace as possible. It's not easy. Like anyone, Ben has issues in his life - money, relationships, kids and just living day to day in this world. But on top of that, there is an insurmountable amount of stress from living with a neuro-degenerative disease that eats away at your body every day. Helping Ben manage these challenges is the hardest part of living with him.

From what I see, Ben has managed to enjoy his life more than a lot of healthy people I know. Of course he has his bad days when I think his temper will kill him right then and there. But for the most part, on a day-to-day basis, he loves his life. He is proud of his accomplishments and he strives to continue making a positive impact. He laughs a lot. And he plays a lot. I am pretty sure that in a strange way ALS has given him something that he will cherish. I know it has it for me. There are times when I try to imagine what Ben must feel like not to be able to scratch his nose, put on a sweater or swish water around in his mouth when brushing his teeth. It is impossible for me to know what this feels like and I watch it every day. I have come to appreciate, more than I ever thought possible, the ability to type, write a check, make a meal, blow glass or hold a child.

Ben is moving out this week. We have decided, for many reasons, that it is time for us to part residences. I am six months pregnant and my growing belly, soon to be a living child, is not allowing me to do the physical things I used to be able to do with ease. I owe it to my marriage to get at least a glimpse of privacy before this baby comes. Ben needs some independence from his overbearing and protective sister and I can let someone else worry all the time about him falling and cracking his head open or choking to death. He needs to be able to get what he wants, when he wants it, and someone else will allow him that to a much better degree than I am able to provide anymore. Now more than ever, Ben needs to focus on his health and a screaming baby won't help that much. I need more time to focus on fundraising and getting this movie out in the world. Like I said, there are many reasons that this is the right move for all of us. It is the end of an era, as Ben likes to say.

As much as I know it is good for everyone, it pains me to see him go. In the past three years, I have learned so much about my life, what is important to me, and how I want to live and love, on a daily basis. I am inspired regularly by my brother, by working on this movie and by my nephew who brings us all so much joy. I fear that when Ben leaves I will lose some of that knowledge. I am crying as I write this, perhaps because I worry about Ben and I am over-protective. Perhaps it is because I feel guilty that I am abandoning him to raise my own family. And perhaps it is simply because living with him and helping him has given me a bigger sense of purpose in life that I want to retain. When people say to me that not everyone would choose what I have chosen, that I have done more than many sisters would, I feel sorry for them because they are missing the point. I have not a moment of regret but I would give up everything I have gained for my brother to be healthy.See footage of caregivers interviewed for "Indestructible"


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June 2006
THE LIST
By Ben Byer

When I was told that I had ALS almost four years ago, my first thought was, “What can I do about it?” My doctor, who explained that there was currently no way to stop the relentless progression of the disease, quickly dispelled that notion. I was dumbfounded. I thought surely there must be something somewhere to fix this problem. I have come to understand that this was part of my denial. But denial is a powerful drug, and it led me to try a wide array of treatments. Some of them may have been beneficial; some may have sped up the disease process. It is impossible to say. Here is the complete list of every method I have tried to stop the loss of nerves and muscles in my body. None of them have been successful.

1) Rilutek- The only FDA approved drug for ALS, proven to increase life span by two to three months. Cost is $800 a month. (This is useless as far as I can tell.)

2) Antioxidants - Lou Gehrig tried this approach. It didn't work for him either.

Vitamin E (The liquid form tastes like castor oil)
Vitamin C (When I was a kid, I loved lemons)
Vitamin A (I have no idea what this does)
Vitamin B2 (riboflavin, same as above)
Vitamin B3 (niacin, same as above)
CoEnzyme Q10 (I took 14 of these one day)
Idebenone (I don't know what this is)
Selenium (Like the metal, I think. Is that a metal?)
Tocotrienols (I like this word)
Alpha Lipoic Acid (Reminds me of battery acid)
Vitamin B12 (I've heard this is good for you)
Biotin (No idea what this is)
Pycnogogenol (Pick-nah-je-nahl)
Tumeric (Isn't this a spice in Indian food?)
Omega 3 from Fish Oil (I bet this is good for you)
Flax seed oil (Reminds me of a burlap sack)
Multi-supplement Anti-Oxidant (Kind of boring)
Ester E (Again, no idea)
PABA (N.I.)
Coral Calcium (I never really took this)
Acetyl-L-Carnitine (Hmmm)
Zinc (Mmmm)

3) The prescription drugs I took that probably damaged my liver:

Celebrex (My friend's mother gave me a one year supply of this)
Minocycline (This is really for acne, but someone thought it would help with ALS)
4) To increase muscle mass, I tried some body-builder methods:

Protein powder (I like vanilla)
Creatine (This dehydrated me)
Two-cal Weight Gain formula (Comes in a blue and white can)
Beta-hydroxy beta-methylbutyrate (HMB, or Tastes Like ****)
Bally's gym 3 times a week with a personal trainer (I hate that place)
5) Still progressing, I went to the Far East:

BuNaoGao, Chinese herbal medicine (This is good ****)
Tai Chi (I met a Tai Chi master named “Young Master”)
Tibetan medicine (I never tried this, but did buy a one year supply for $7)
Buddhism (I really thought this would help)
Acupuncture (I don't like getting stuck with needles)
Massage (The best hour of my week)
A fetal cell transplant into my brain and spine (I caught this all on film)
Chinese food (It is actually considered medicine in China)
6) Still progressing:

Actos (A drug for diabetes that I took for a month)
Yoga (Both of my instructors are hot)
Spending time with my son
Making a great film (This is fun)
Good food and wine (These taste good)
Medicinal Marijuana (This tastes really good)
Accepting my life (The End)

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