AmazingGrace
New member
- Joined
- Jul 8, 2024
- Messages
- 0
- Reason
- PALS
- Diagnosis
- 10/2023
- Country
- US
- State
- UT
My ALS Story
Since February 2023, I have experienced symptoms affecting my health and daily life, starting with neck discomfort. Despite chiropractic adjustments and medications, the pain persisted, and new symptoms emerged, such as 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 neurologists, speech therapists, respiratory therapists, physiotherapists, and social workers. Receiving care from specialists in a multidisciplinary clinic is a significant privilege.
ALS affects nerve cells in the brain and spinal cord, causing muscle weakness and impacting the ability to move, speak, eat, and breathe. The diagnosis was tough to accept, given ALS’s aggressive progression and lack of cure. I began using non-invasive ventilation, BiPap and ACM, due to breathing difficulties.
On March 3, 2024, I lost my voice. That month, I underwent surgery for a gastrointestinal tube (PEG) due to swallowing difficulties. Since April 2024, I have used a power wheelchair (PWC) due to balance issues. My ALS symptoms started in the bulbar area, leading to significant muscle weakness, though I retain some mobility.
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 July 8, 2024. It’s been 1 year and 5 months since the symptoms began and 9 months since the diagnosis.
Maximo - PALS
Since February 2023, I have experienced symptoms affecting my health and daily life, starting with neck discomfort. Despite chiropractic adjustments and medications, the pain persisted, and new symptoms emerged, such as 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 neurologists, speech therapists, respiratory therapists, physiotherapists, and social workers. Receiving care from specialists in a multidisciplinary clinic is a significant privilege.
ALS affects nerve cells in the brain and spinal cord, causing muscle weakness and impacting the ability to move, speak, eat, and breathe. The diagnosis was tough to accept, given ALS’s aggressive progression and lack of cure. I began using non-invasive ventilation, BiPap and ACM, due to breathing difficulties.
On March 3, 2024, I lost my voice. That month, I underwent surgery for a gastrointestinal tube (PEG) due to swallowing difficulties. Since April 2024, I have used a power wheelchair (PWC) due to balance issues. My ALS symptoms started in the bulbar area, leading to significant muscle weakness, though I retain some mobility.
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 July 8, 2024. It’s been 1 year and 5 months since the symptoms began and 9 months since the diagnosis.
Maximo - PALS
