Back for their third year, The K-Team hopes you can join us for The Orange County ALS Association's Walk to Defeat ALS. We'll be back at The OC Great Park in Irvine at 9:00am on Saturday, November 9th, 2019.
The Association was there for us in February, when on Super Bowl Sunday, Kay took a fall. Since then, she’s gotten around only by a power wheelchair, provided through the Association. They’ve also helped us with a couple of other pieces of equipment.
The multidisciplinary care team at UCI has also been a compassionate and encouraging part of our lives. We meet with each member of the team at every visit—physical therapist, speech pathologist, respiratory therapist, an advocate from either the ALS Association or the Muscular Dystrophy Association, a clinical care coordinator, as well as the doctors and research staff. Also available are a dietitian, occupational therapist, social worker and mental health professional. The Association and the care team work in unison.
So many of you reading this have also been supportive through your visits, prayers and cards and messages. We are thankful to all of you for coming alongside of us.
Since last year’s Walk, Kay’s disease continues its progression, though we’re thankful that, for now, it seems to have advanced slower than other cases we’ve heard and read about. Besides moving around solely by her power wheelchair, Kay’s grip strength in her hands is weakening and her cough is weaker, necessitating the use of a cough assist machine.
As you’ve seen from Kay’s pictures and social media posts, these challenges haven’t stopped us from making memories: We took a business trip/mini vaca in San Diego, which included a Padre game and a ballpark tour of Petco Park. There was the day at the Orange County Fair with Bethany and Bekah where we ate a BUNCH of fried and otherwise unwholesome food. Our daughters joined us for a Carrie Underwood concert weekend in Bakersfield. Our Navy son Joshua surprised us with a Memorial Day weekend visit with four other sailors from his submarine.
These memories and the ability to create them bring to mind a quote we read from a fellow PALS, “I have ALS, but ALS does not have me!” This has been inspiring and keep us on the lookout for other opportunities to share great experiences.