Tuesday, January 17, 2006

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.

5 comments:

Ben Byrne said...

Scott--

Pictures are worth a thousand words. Thank you for for posting them; they are quite sobering as the differences between right and left are obvious, and seeing them really helps contextualize some of the physical difficulties you are experiencing. I can only hope my forthcoming donation will help in some small way...

craig said...

112% lung capacity? does that mean that you can breathe more air than what fits in your lungs? sweet. left weak side or not, i want you on my water polo team.

and on another note, should i really be viewing this at work? i feel stragely turned on. . . .

lecia said...

Wow, thanks so much for posting the photos Scott. I can see the obvious difference and punched me in the stomach of how much I continue to take for granted. Thank you for looking in the mirror, thank you for inviting us to look in the mirror. You create space for us to experience life, and experience you, more fully. Thank you for the blessing

Vanessa said...

Scott,

Your brave pictures made me sad and angry...sad that it is becoming apparent and angry that it is happening to Eva's father...

Your pictures also helped me...seeing that my symptoms are so similar, trying to be patient while my doctors make up their minds...

Your words made me laugh...you ARE a writer...get busy and start that screenplay or book...turn your powerful play into a masterpiece

Anonymous said...

dude
i appreciate your writing and your honesty. i'm in my own battle. thanks for taking time to write. ed