ALS Seminar

Saturday, 28 May 2005

Don't you just love it when you're about to brush your teeth and you find a big brown cockaroach nibbling on your toothpaste? After my brother and I ate our Korean BBQ plate lunches from Gina's restaurant tonight for dinner, I started cleaning the floors with a handbrush and a dustpan, and scrubbing the muck off the stove and washing down the burners. At one point, my brother asked, "What are you doing? Are you bored or something?" I simply replied, "Yup," and he said, "Alright, keep on cleaning then!...Oh, there's some cleaning wipes over here too." Typical brothers.

This morning, I drove down with my Aunti Stevi and Uncle Gary to Kapi'olani Community College for an ALS seminar. We met my dad and Bernie, Whitney, and Lindsey, and my brother there. There were different vendors there at the MDA sponsored event. Neurologists talked about the history of ALS with an introduction about Lou Gherig, the medication tried in the past, while others talked about financial stuff, power of attorney, establishing living wills, and OT, PT, and speech pathologists talked about daily maintenance for quality of life, as well as long-term care. The most powerful presentation was made by a chaplain from Hospice Hawai'i. He was engaging, told personal funny stories, and emphasized the importance of the caregivers taking time for themselves to avoid burnout, which commonly occurs among people taking care of loved ones that have been diagnosed with the debilitating disease. It was a useful seminar, and I was able to meet other family members and patients that my dad and Bernie have been socializing with through the ALS support group.

One woman shared pictures of her brother, who has now been on a ventilator for over a year. He can only move his head back and forth and make eye movements, but loves to watch all his sports on TV in his nursing home. She told my dad that at first he did not want to be on the ventilator, but then family members convinced him to do it, and now this is where he is at. My dad said he would cross that bridge later. There was a fairly new couple there too; the husband was just diagnosed last Thursday with ALS and is using a cane to walk. It was interesting to hear more about ALS. There are going to be a lot of expenses involved as the disease progresses and my dad needs more assistive devices. It's good to know what resources are out there.

My aunt and uncle brought me home after we picked up Subway sandwiches for me and my cousins. I did some laundry. Then, Jay and I went to HomeWorld to window shop. He wants to get a new sofa set for the house and a bedroom set for his room. His friend Kai met us there, and then we all headed to the beach; they went for a late afternoon surf (so Jay could try out his new surfboard my cousin Mike from Seattle made for him) and I laid out on the beach for a couple of hours.

My dad and Bernie ran errands today at Sam's Club and then went to hear the symphony with Keali'i Reichel performing. I'll check in tomorrow with him. It's a long holiday weekend, and some schools just finished this week, so there's going to be a lot of people out and about.