I Will Be Okay... My ALS Story

Since February 2023, I have experienced symptoms that have profoundly impacted my health and daily life, beginning with neck discomfort. I recall traveling with my wife to visit our parents in Puerto Rico during that time, which was a wonderful experience despite the intense pain I was enduring. I sought chiropractic adjustments and medical consultations, and medications were prescribed, yet the pain persisted. 

Later, when we returned home, new symptoms soon emerged, including muscle weakness, cramps, difficulty breathing, fatigue, and twitching.

After extensive medical consultations, I was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in October 2023 by my neurologist. The diagnosis was confirmed at the University of Utah’s ALS clinic.

ALS patients require a multidisciplinary approach to care, including specialists in a vast variety of specialties and professionals that we found very helpful at University of Utah Neuroscience Center. That clinic is a significant privilege. And I have had the privilege of being helped in many ways through ALS Unites Rocky Mountain and its coordinator in UT, Jared Nelson.

ALS affects, not only the nerve cells in the brain and spinal cord, but also hits you very hard in yourself and your family.

The diagnosis was tough to accept, given ALS’s aggressive progression and lack of cure. 

Well, My ALS symptoms started in the bulbar area, leading to significant muscle weakness, though I retain mobility in my extremities.

I began using non-invasive ventilation, BiPap and ACM, due to breathing difficulties.

On March 3, 2024, I lost my voice. That month, I also underwent surgery for a G-tube due to swallowing difficulties. Since April 2024, I have used a power wheelchair due to balance issues.

Adapting to this reality has been challenging for my family and me. In this struggle, I find comfort in God’s Word. Jesus said we would face afflictions but assured us He has overcome the world (John 16:33). Our hope is in the Lord, who sustains us. Psalm 23:4 reminds us not to fear, for God is with us.

We trust the Lord, our refuge and strength (Psalm 46:1). Though we don’t always understand His purposes, we know His plan is perfect (Romans 8:28). Even amid difficulties, we find comfort in Paul’s words: “For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us” (Romans 8:18).

I am grateful for the prayer support we’ve received. Ministerially, I’ve had to adjust and am no longer working as before. I continue to pray for upcoming changes. We trust in God’s healing power and guidance. We rely on His faithfulness and love.

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal” (2 Corinthians 4:16-18).

I do not deny that suffering brings many emotions and that I experience highs and lows. But I have appreciated God’s grace in this process. I am grateful and joyful.

This is my story up to August, 2024. It’s been 1 year and 6 months since the symptoms began and 10 months since the diagnosis.

Despite my lack of voice, or a fluent conversational English, I feel welcome and supported by each of you. I really appreciate that, as well as my family.

Guys, you’re in my prayers too.

Thank you.

 I will be okay, and I will always say: what Amazing Grace!

Thank you for helping us reach our Walk ALS fundraising goal! Together we can make a difference in the lives of those affected by ALS. Our team is committed to raising money to support people in our community with ALS and spread awareness of the urgency to find treatments and a cure. Please consider joining our team in the Walk ALS Utah Event or choose a team member from the list and donate to our cause.

WHY WE NEED YOUR HELP

Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.

That’s why we’re participating in Walk ALS. To bring hope. To raise awareness. To provide resources and services to families free of charge. To help conquer the mystery of ALS and find the key to treatments a cure. Will you join us?

ABOUT ALS

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. Presently there is no known cause of the disease, yet it still costs loved ones an average of $250,000 a year to provide the care people living with ALS and their families need. Join the movement to provide help and hope today!