ALS Seminar

Saturday, 20 May 2006

Today was the annual ALS Seminar. I skimmed the last part of the keynote speaker's book, Waking Up, before arriving at the Queen's Conference Center. Terry Wise, a woman who lost her husband to ALS at age 35 and then had to come to grips with her own depression and near-fatal suicide, gave some important messages to caregivers and patients alike during her presentation. She said, "The day you tie your spouse's shoes, your marriage and relationship changes." She emphasized the "Give Me Flowers" lesson to emphasize the importance of communication, taking care of yourself, and accepting help. When she opened up for questions, my stepmom asked how she dealt with the intrusions, as suddenly their private lives were open up to caregivers and friends in the home. Terry said to take time for yourself and partner, to schedule sacred time for the both of you and indicate that to the other caregivers and friends. Although I found her book depressing (as her book was less about caregiving for her husband but more about her preexisiting issues she had to work through along with the caregiving), her speech was very helpful to the 70 or so in the audience.

As I read Wise's book, I wrote down these important quotes as well. She had "trained (herself) to unfeel the sounds corning from (her) lips". Having healthy arguments, making jokes, having emotional intimacy, or even a kiss, were no longer possible once her husband's body degenerated and even his speech entered paralysis. She said, "...because I was interpreting, I had to listen to the tone of his voice, a constant reminder that he was dying right before my eyes." Yet, this "honed (her) ability to internalize (her) suffering as (her) words became less of (her) own."

We met many new people, reconnected with OTs and PTs, saw some old faces, and various ALS clients in various stages, some worse than dad, some with still some physical movement, but slurred speech, and then some whose condition was better than Dad's yet who've had ALS longer. It's interesting how each individual's symptoms are different.

Kimi and Peggy Chun presented. Good to see them since we visited them at their house a couple months ago. Peggy, a famous local artist, who has a rare form of genetic ALS and after four years, is now fully paralyzed and only has occular movement of her eyes, emphasized that Share the Care groups are the way to go. She tried to demonstrate her Erica computer communication system, but there were technical difficulties. She's so vivacious and friendly, even if she can only move her eyes (yet she can't even close her eyelids anymore) and is on a ventilator. There were presentations on legal issues, like wills, durable power of attorney, advanced health care directives, and Medicaid as well. The seminar was very good and informative, and it's always good to see "friends".

Went to KMart afterwards to get storage containers and a vacuum to clean and organize my room. It's so dusty and humid here that I needed to repack some things. Since I didn't really eat all day, I gorged on a Korean plate from Gina's and then had a "kanak attack", which means I passed out for a few hours from a full tummy.

I went out with Linh and Ken to a birthday party of her friend Travis. It was interesting to people watch (felt like college days going to a house party), as we were the only straight people there.