Sharing stories

Richard Tran: Helping Build an ALS Residence for Hawaii, One Burger at a Time

My niece, Darlene, who is one-half of my so-called “IT Department,” invited a couple of her friends from Seattle to spend a week on Oahu. One of them was Richard who laughed his funny way into our hearts.  He ended up extending his stay into Christmas, to participate in our annual holiday shenanigans, usually orchestrated by the young people in my big Filipino family. In short, my family took to him as he fell in love with Oahu hard.  He…

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Her Words, Not Mine

Part of our mission is making people aware about what life with ALS is like for both patient and his family. Prior to the pandemic, I was regularly invited to speak before groups, opportunities which I rarely refuse. I have been a nurse educator all my life and have tried every way of presenting material so it becomes vivid to my audience, so that they come away more understanding of the material. When I come short of that expectation, I…

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On Christmas Eve

One of the most difficult things to do is to gather one’s thoughts THIS close to THE most artificial deadline of all time! Before today, all important things such as the Christmas brunch and dinner menus and what games to play this year, shall have been discussed and laid out days ago, before the store runs out of honey-glazed ham and before all the pan de sal is sold out. Preferably after Thanksgiving dinner… or maybe during Thanksgiving dinner, while…

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Rita Melville Alarcon: “… Breastless” But SO MUCH more!

In 2015, Rita’s mom, Patricia, started experiencing slurred speech and progressive weakness. Living in Hawaii while her children were in the mainland, Patricia kept her health concerns to herself. When she could no longer keep it a secret, her disability had gone much further along.  When they learned, Rita and her siblings flailed around in shock. Eventually, they were able to negotiate among themselves the best way they could care for Mom, considering many factors, not the least of which…

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St. Francis Healthcare Sponsors ALS Caregiver Class

8 August 2020, Kailua – In the past two years, I have been teaching in-person classses for the St Francis Healthcare Family Caregiver Program twice a year. In the beginning, Shaun and Renee Brewer would accompany me so that a pALS’s perspective would enhance the presentation. For the past two times, Sandy and John Repczynski have taken over from the Brewers. Like much of everything, the current pandemic has forced the classes to be reconfigured; instead of in-person, they will…

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A FRONTLINE NURSE’S EXPERIENCE WITH DAD’S ALS

May 13, 2020, Kailua, HI.   Norgen Orpilla Dalit was an experienced nurse from the Philippines when she came to the US in 1991. Her older sister, also a nurse, had sent her to nursing school, for which Norgen has remained specially thankful. While in the Philippines, she worked in the OR and OB-GYN Labor and Delivery. Prior to finally settling in the US, she first detoured to Saudi Arabia, becoming part of the huge nursing force recruited from the…

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