Father & Sundance

I vividly remember the day my dad took me to see Star Wars in 1977. I was 5 years old. We went to Cina 4 on Robert Street in St.Paul, and sat about half way down in the center of the 'red theater'. I nearly exploded with excitement that day. It was an experience that ignited both my imagination and a fondness for film. Friday afternoon movies and dinner with Dad are a very memorable part of my life.

It was our love of film, my illness, and a sense of adventure that took my father and I to the Sundance Film Festival in Utah last weekend. I mention my illness because we almost certainly would never have gone if not for a very personal connection. We went to attend the premier of a documentary called So Much So Fast, about Stephen Heywood and his family's battle with ALS since 1999, and the ALS Therapy Development Foundation they started to find a cure.

We met Stephen's brother Jamie, who heads the foundation, shortly after my diagnosis in 2004. Not only do we share the Heywood's fight against ALS, we identify with their situation. Like myself, Stephen was diagnosed at a young age, when he was trying to start a family with the love of his life. He wants to stay alive for his little boy Alex, as I do for Eva. We can also relate to the Heywood's sense of humor, indispensable for coping day-to-day.

Dad and I flew into Salt Lake City on Friday. We stayed at a hotel downtown throughout the weekend since everything was booked in Park City, where the majority of the festival takes place. The Heywoods, ever the gracious hosts, were kind enough to invite us to dinner on Saturday night. Great conversation, great people.

We knew before leaving that tickets for all four screenings of the film were sold out, but Stephen's wife Wendy managed to score us seats for the initial showing on Sunday. The film is phenomenal, in both craft and story. Dad and I give it two energetic thumbs-up (me using my right hand of course). As the attendees we talked to noted, the film is profoundly moving, even for those unaffected by ALS.

For my father and I, it was intensely personal. Indeed, I felt as though I was watching my future: Stephen's progression to a wheelchair and ventilator; the growth of his child; the financial struggle; the adaptation of his family. The faces and places might be different, but all of those things lie ahead.

The Heywoods are role models for my family. We've learned a great deal from them already. So Much So Fast will help unveil their world to so many others. No doubt it will broaden public awareness of ALS, which currently seems limited to the book Tuesdays With Morrie. The film will give a voice to the younger people struggling with ALS as well. After the screening, I thanked the directors (Steven Ascher & Jeanne Jordan) for helping to tell "our" story.

Dad and I took in a few other films throughout the weekend, most of them quite forgettable. Sometimes independent films remain unknown for a reason. We didn't see many celebrities, although I nearly ran over festival founder Robert Redford on the way out of a panel discussion. Oh, and I'm pretty sure I saw Lea Thompson walking up Main Street.

We ate well. Tried a few different restaurants, most of which require a 'private membership' to serve alcohol. We sampled a few of the local brews. My personal favorite: Polygamy Porter, slogans for which include, "Why have just one?" and "Take one home for the wives!" Like I said, a sense of humor is crucial.

Most of the time Dad and I just hung out and talked. I've been so wrapped up in the race against my illness lately -- so much to do, so fast -- it was nice to find some private time with him. So thanks to the Heywoods for their openness and hospitality. And thank you, Dad, for another wonderful time at the movies.

504 A.D.

How about a little show and tell? I've described my symptoms in writing, but they say a picture tells a thousand words, and anything I can do to reduce typing time is worthwhile. But first I must warn you: the images you are about to see are real. Real amateur quality that is.

In Figure 1, the muscles in my left arm are showing signs of atrophy. As the signals to control them weaken, so do the muscles themselves. I've never been known for Herculean strength of course, but hopefully you can see that my left forearm is smaller than my right. The same for my biceps in Figure 2, where, believe or not, I'm flexing my arms as hard as I can. Typical for ALS, the neurons controlling one side of my body were affected first, followed by a jump to the other. My right side is indeed starting to atrophy, but is still much stronger than my left.

My left hand, little trooper that it is, isn't doing so well. Figure 3 highlights the difference in the 'thenar eminence' on each hand, the puffy muscle that controls your thumb. Not only does it have a cool name (I feel like I should bow before it saying 'your eminence'), but I've found that living without one of them is a royal pain. Get it? Royal?

Anyway, if you try squeezing the area of skin between your thumb and index finger, you should feel a pretty solid muscle there. That muscle is virtually gone on my left hand, making it rather difficult to button pants, clip fingernails, open jars, or zip up my coat.

The fingers of my left hand are weaker as well. As Figure 4 shows, the muscles on top of each finger are weaker than those on the bottom, giving me a bit of 'claw hand' (technical lingo for 'gimpy'). Whereas it's easy to flatten my right hand, it takes real effort to straighten the fingers on my left, which twitch uncontrollably.

Moving down past my midsection -- the important parts of which are functioning just fine, thank you very much -- we arrive at the leg-ular region. Figure 5 shows the subtle difference in my calf muscles, the left having lost some of its former robust definition. Subtle or not, my walking and balance is much worse because of it. At my last checkup, my left leg was fitted with an ankle-foot orthotic (AFO to us in the ALS biz). Shown in Figure 6, it helps manage 'drop-foot' by keeping my toes up as I walk, so I don't have to overcompensate as much by lifting my hip.

The brace doesn't solve the problem though. My thighs are weak too. I now have to push off with my arms to stand up from a sitting position. I fell down the stairs a few weeks ago and sprained my right foot. First time I've fallen in a few months. Turns out a small piece of bone was pulled off as one of the tendons was torn. I can walk on it, but it will take about 8 weeks for it to heal. Happy New Year right foot!

In general, I'm still pretty tired most of the time. Makes sense in a way. My doctor says people with ALS have to use ten times more effort to move around than a healthy person. Another useless piece of trivia: you can lose up to 40% of your muscle before noticing weakness. I guess that could be considered a good thing, versus feeling it right away.

Speaking of good things, my breathing is still 112% of capacity. Much better than I thought it would be at this point, given my fatigue.

I trust it's ok to share these pictures with you. Perhaps you can't even see the differences I'm talking about. They're obvious to me, but I look at my body in the mirror every day (jealous?). Helps bring the reality of my condition home, which quite often I try to ignore. But more importantly, I share them to be open and honest with everyone because I want people to start getting comfortable with my changing appearance. Down the road, people are sure to comment on how different I look, and I want those people to remember that it's just my body. I'm still the same charming yet amazingly modest Scott Stafne inside.

Young dog, new tricks

Nothing matters anymore. Those were among the first words that ran through my brain when I was told I had a fatal illness. Nothing beyond the obvious - family and friends - would ever feel important to me again. Not my career, not my hobbies, not books, movies, politics, or sports. And certainly not trivial things like laundry, shaving, or brushing my teeth. Or so I felt during those first several weeks of shock. I did eventually start to brush my teeth once in awhile.

When time may be short, the compulsion to assume it’s not worth learning new tricks can be overwhelming. Nothing seems worthwhile. While that tendency may be due to physical limitations, and certainly understandable, I’m convinced it boils down to a choice. Do I assume the worst and essentially give up? Or do I take each day in stride, do what I can while I can, and leave the ‘old dog’ routine to the dogs?

My wife recognized my determined apathy and gave me a gift certificate for a continuing education class at the University of Minnesota. I got so excited I signed up for two: a biomedical ethics seminar and a writing class, which met once a week last fall for 3 and 4 sessions, respectively.

Both turned out to be very thought-provoking and educational, and it felt really good to be doing something new and stimulating. Although I must admit, my motives for choosing those classes were not purely academic. In the biomedical ethics class, we discussed health issues such as infectious disease management, medical research, and end of life issues, all of which matter more to me now.

I also had a very practical reason for wanting to improve my writing. The class helped me focus on writing more concisely, which will be very important as my ability to type continues to fade. I need to choose my words carefully to minimize the effort in getting them on the page.

But the important thing is for me to keep putting those words out there. To keep myself excited and engaged with the world around me. I struggle to do it every day, but the effort is therapeutic. I signed up for a screenwriting class this winter. This young dog intends to put a few more tricks up his sleeve. Better yet, I intend to continue using the tricks I already know. I might even start shaving again some day.