Aloha,

I would like to begin with a little history of my experience and privilege of helping people with ALS. In 1987, we joined the Punahou family and watched the documentary One More Season, which aired here in Hawaii. It is the incredible story of Charlie and Lucy Wedemeyer experiencing God‘s gift and grace of one more season of football for the Los Gatos high school football team as they became championship winners. In 1989, we got word that Charlie  and Lucy would be speaking at the Ilikai Hotel in Honolulu in late July, 1989.. Thanks to Morris Takushi, Roland and I bought a table for 10 and went to hear & meet the Wedemeyer‘s. Then on August 8, I was blessed to arrange for Charlie and Lucy to speak at Punahou school before they headed home. That event began a precious and priceless friendship, and teaming up in ministry that is ongoing to this day.

A couple of years later Charlie and Lucy were again speaking in Honolulu at Calvary by the Sea Church and I was able to meet Gemma Galati . Gemma had come to hear the Wedemeyer’s share their incredible testimony of living with ALS. Gemma came and visited with me before leaving the event. Her husband, Nick, was struggling with ALS and she needed help. By God’s grace, I was able to be with Nick and help him and Gemma for several years.  

Then in 2002, March 21, our dear friend, Peggy Chun, was diagnosed with ALS.  Peggy’s son, Eric, and our son, Steve, were classmates at Punahou, class of ‘89. For the next 6 years, I was blessed to be “the scheduler” of the incomparable “Peg’s Leg’s”! 

That is the background of my Divine appointment for my Lord to minister to and be ministered by these dear people with ALS!!!

In May 2021,  I began experiencing difficulty in walking. I had no idea why and joked with my walking partner, Gerry Fey, that I could play a good game of doubles tennis but was having trouble walking?! Tennis came to an end in August 2001. Doctors appointments began and have continued to today which is the reason for sharing my journey. My health has deteriorated to difficulty standing for more than a few minutes and needing a walker to help me walk. We have experienced regular doctor appointments, neurology appointments and MRI, all leaving us with no real answers as to what is my health problem. Until…

Assessment:

81 year old woman presents for evaluation of weakness; notes progressive weakness over the past ~ 18 months, gradual but relentless and presently she requires a walker and is only able to walk short distances.  Exam with left leg > left arm and right leg weakness, mild sensory loss to left leg.  EMG 8/2022 with severe and diffuse denervation involving the left > right leg and paraspinals.  MRI LS with no severe stenosis to explain the EMG findings.  Overall her presentation is concerning for motor neuron disease, will plan to repeat EMG to confirm.  Of note, patient was bless to co-produce the television documentary COURAGE TO LIVE:  The Story of Charlie and Lucy Wedemeyer.  It is still available on YouTube today.

Monday, December 5, 2022

Scripture for today—Psalm 139:1-18

Roland and I met with Dr. Christopher Kurahashi at Kaiser Medical Center. Dr. Kurahashi specializes in ALS. He spent several minutes testing in different ways my strength level on my left side. He found a definite increase in weakness, even in my right leg. He scheduled me to come in on Monday, December 12, for further testing. I ask him about some possibilities- I wondered that might be causing all of this and he explained he wants to look into the possibility of ALS. It was definitely not a diagnosis but a concern that he was leaning toward. He wondered if I had considered that as a possibility when he learned of my experience with ALS patients? Honestly I had not. 

When Roland and I got in the car we took time to thank God for the depth of faith which He has blessed us.  Our complete trust is in Christ!  He will guide us every step of this journey.

Monday, December 12, 2022

Scriptures for today—Proverbs 3:5-6; Philippians 4:6-8

I was officially diagnosed with ALS.  I started on pilebzone and scheduled to start the ALS Clinic on February 16, 2023

My lean on Scripture will be Isaiah 41:10—“ Do not fear, for I am with you; Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, surely I will uphold you with My righteous right hand.”  God is good, all the time.  All the time God is good!!!

WHY I WALK 

Thank you for helping me reach my Walk to Defeat ALS® fundraising goal! The Walk to Defeat ALS® is very important to me, as it raises funds to support those affected by ALS and to spread awareness of the urgency to find effective treatments and cures.

Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of a person with ALS averages 2 to 5 years from the time of diagnosis. ALS can strike anyone, and presently there is no known cause or cure. 

A person with ALS becomes physically locked-in as the disease progressively paralyzes the body. The key to UNLOCK ALS begins with us. 

Please consider walking with me or sponsoring me. With your help, we will be able to make a difference in the lives of people affected by this disease. Click or tap on VIEW MY TEAM above to join, or on DONATE to make a donation.

The past few years have brought incredible advancements in ALS research, expanded access to care for people living with ALS, and enabled legislation that impacts the quality of life of people with ALS and their families. We can't stop now! It is only together that we will defeat ALS!