My name is Darrell Pakele and I live on the Big Island of Hawaii. I have a beautiful wife, Sue, who is my whole heart. My neighbors in my hometown of Hilo know me for always being up for a good game of volleyball, raising pigs, and growing vegetables in my garden while I’m at home. My friends tell me that I’m the kind of guy everyone loves to be around, because I am always smiling and willing to lend a hand.
In 2014, I semi-retired from working as a volleyball referee throughout many New England college leagues, and Sue and I moved from the mainland back to Hawaii to be closer to family. In 2016, I started to notice something was different about me. My words were becoming slurred and, by 2018, I started losing muscle in my right leg. It was many years after those first symptoms that I was diagnosed with ALS, at the age of 55.
The disease has changed much of my life. I had to convert our garage into a studio bedroom with an open-style shower and bathroom. While my speech and physical mobility are compromised, I still like to keep busy in the yard with small woodworking projects and tend to our one very spoiled pet pig, Laka. I enjoy working out at our local pool, tending to my garden, and cooking different Hawaiian and Filipino dishes. I have three neurologists in three different locations: one in Hilo, one on Oahu that specializes in ALS, and I am also fortunate to be seen at an ALS Association Certified Center of Excellence in California.
I could not imagine doing any of this without my incredible family and extended ohana (family), who have been so helpful. My cousins have been a huge support and I am especially grateful for Sue, who is not only my wife but my caregiver and does everything for me. In a word, she is tremendous. We have been fortunate, but there are some people who are in denial. It’s almost like they think this is all just a bad dream.
I understand ALS is hard to face, so I don’t hold anything against those who struggle to accept my diagnosis. But it is easier to fight ALS when you have help. That is why it is so important that each of us in the ALS community actively shares our “Why We Walk” stories, so that we raise ALS awareness and support.
For example, Sue and I held a fundraiser selling “#ALSPakeleStrong” T-shirts to share our ALS story, and we were able to donate $750 of the funds we raised to support the mission priorities of the Golden West Chapter. This includes their free wraparound model of care services that I have personally benefited from, and I’d like to give a special shout out to the staff in Hawaii for all they’ve done for me and my family!
This week, the Golden West Chapter Walk to Defeat ALS Countdown Challenge is giving prizes away to participants who share their “Why We Walk” story on social media or by email and survey. In addition to what ALS means to your life, please think of me and my family as you observe the importance and the urgency for rallying others in the fight to defeat ALS.
In regular times, families facing ALS like mine would be looking forward to gathering together in person at community outreach events and support groups. While the pandemic has changed where we meet, our reasons why remain the same. The Walk to Defeat ALS is more than just a day to raise awareness among neighbors and the public who may not know about our challenges. It is the biggest annual gathering of the ALS community and offers incredible support for families like mine.
Please share your story and call on others to support our community this year.
As Sue says, “ALS sucks, but you can either deal with it or give up.” We try to live each day with gratitude, even though we have many challenges. I miss us getting together, sharing stories and enjoying each other’s time in person. But I can’t wait to see you all at the Zoom start line on Saturday, October 23.
Mahalo for all you do to support families facing ALS. Together, we are all ohana through the Golden West Chapter and the Walk to Defeat ALS. From the Big Island of Hawaii -- enjoy life, have a great day and aloha!
Living with ALS since 2018
Team Captain, #ALSPakeleStrong