Wednesday, January 30, 2013

Coming Soon: "After Words," a Film about Aphasia

If you're reading my blog, you probably know what aphasia is, and how devastating it can be. But so many people have never heard the word. Raising awareness of aphasia--what it is, and how it can radically change a person's life--is important. It will help more people to get the support they need to lead a productive life.

So I'm really happy that After Words, a film about living with aphasia, is airing on many PBS stations, including WGBH in Boston. It will air in Boston on February 3 (Super Bowl Sunday) at 3pm. If  your local PBS station isn't on the schedule that the National Aphasia Association has published here, ask your station to air it.

Please watch it, talk about it with friends, and use the word "aphasia." Talk about how Gabby Giffords has it. Or how common it is: more than 1 million Americans are estimated to have it, and countless family members are affected, too.

In addition to the PBS showings, there are two special screenings in Boston (March 3) and New York (April 10). The screenings include conversations with cast members, the directors, producer, and (in New York only), Oliver Sacks. 

Full disclosure: I'm in it; my kids are in it; many of my friends from the Aphasia Community Group of Boston are in the film; and one of my former speech pathologists, the amazing Jerry Kaplan, is one of the directors. 

Here's a trailer from the film.

Friday, January 25, 2013

Out of the Comfort Zone

Right after the stroke, I was warned repeatedly to be very, very careful. So I was. I went without falling at all for more than six months after the stroke. When I did finally fall, it was a very gentle plop in my backyard. I've stumbled some other times, but I've always been able to catch myself.

But since October, I've fallen three times. The last time was Monday, when I got up early (very unusual for me) and decided to go outside to get the newspaper with my PJs and  robe on. As I was climbing up the four steps up to the porch, with the newspaper clutched under my right arm, I suddenly lost my balance and fell sideways. I landed beside the steps, into a pile of plastic shovels. I broke my daughter's play shovel. I got a scratches on my right hand knuckles. My dignity was hurt. I was shook up.

Sometimes a little thing can mess up my balance: an especially windy or cold day; an outfit I haven't worn much; two steps that don't have a place to grab on to; holding something I usually don't hold. That day, I was challenged by all these things. (That, and my lack of coffee.) Usually I'm meticulous about preparing myself, but I didn't do that on Monday. I just wanted to get the damned newspaper.

My husband and I agree that, in some ways, it's a sign of progress: I'm  pushing at the edges of my comfort zone. I just hope that I can get through this phase of my recovery without any more serious injuries than scratched knuckles.

Monday, January 14, 2013

What Kind of Mother Am I?

I walk to pick up my kids at school most days. It's tricky to walk and have a conversation at the same time for me, so I go very slowly  and lean on my cane at lot. But on the weekend,  I try to squeeze in a walk alone. That way, I can concentrate completely on my gait: am I walking evenly? Can I push myself to walk faster? Am I remembering to swing my right arm?

But even on weekends, sometimes the only way I can get a walk is to have my seven-year-old daughter tagging along. She chatters on, making me wish that my walking could be more automatic, so that I could have a real conversation with her. But instead, I'm rather stern: please don't walk right beside me, I say, because there isn't room for me, my cane, and you; please don't walk right in front of me, I say, so I won't trip.

A few weeks ago she accompanied me, and I strongly suggested that she walk behind me on the narrow sidewalk, so I could concentrate. So she did, but she still kept a running commentary.

"Oh Mommy," I heard her voice, " you're not using your cane much! Good job, Mommy!"

A few steps later, she commented,

"Mommy, you're walking almost normally!" Then she observed a little bit more.

"Actually, Mommy, you walk a little like a robot."

Almost normal mother. Robot mother. Watched mother.