Autoimmune Disorders
I Found 6 Patterns After Deeply Researching ALS Disease for My Father.
Amyotrophic Lateral Sclerosis is a neurodegenerative disease with no cure, but scientists have some clues for prevention.
A Story Close to My Heart, Mind, and Spirit
I have written many articles on neurodegenerative diseases. They were challenging. But none has proven more emotionally taxing than this story.
Its genesis is rooted in years of profound personal anguish, yet the narrative must be told to raise awareness, albeit without overwhelming my readers with emotions.
To achieve this, after a short background, I will focus on the logical aspects of a lethal disease from a holistic health perspective, summarizing the critical points of my years of research and making it a valuable piece for my audience.
This is not a theoretical piece. It reflects real-life experience explained by years of research, including observations and case studies.
I provide intellectual, emotional, and intuitive perspectives on a lethal disease that baffles the world’s leading medical experts. Inexplicably, the human body begins to attack its cells, perceiving them as foreign invaders.
My First Encounter with ALS
My initial encounter with ALS came in my first year of postgraduate studies during a health class covering neurodegenerative disorders.
Reading it from textbooks seemed like just another medical condition, then. But my perspectives changed when I watched the award-winning movie “Tuesdays with Morrie” in 1999.
Watching this movie felt like the universe was signaling something. I intuitively knew something would happen related to this movie. But I did not know what the essential message was for me.
A few days later, my family’s life unexpectedly turned when my father was diagnosed with ALS. The neurologist first revealed it to me as he perceived I was the oldest and strongest of my siblings. But the news hit me like a truck. I couldn’t find words to express the sudden rush of emotions.
Then my sister living in another city, heard about it and came to visit our father. She couldn’t hide her tears for days while talking with him. My innocent father, who did not know his condition, kept asking why she was crying. My younger brother was confused and kept asking me questions I had no knowledge to answer.
As the family absorbed the news, we were consumed by worry and made plans. In the meantime, we all kept asking why it happened to our healthy, fit, and energetic father, who showed no worry signs until recently.
I sought counsel from this ALS specialist (a close friend working as a neurologist) in a private hospital. He confirmed my worst fears compassionately and realistically.
There was no cure, and he could do nothing. His longest-living patient only lived four years after diagnosis.
He was a double board-certified medical doctor with an additional doctoral degree in neuroscience. Considering his credentials, I hoped he could do something about my father’s situation. But he sounded as vulnerable as I was.
He shared his decades of research with me but was careful not to give me false hope. Instead, he advised me to cherish every moment and make the most of the time we had left with my father.
His words left me reeling. I spent weeks and months poring over his research, reading every paper he indexed during his studies. I paused my formal studies for a term and only focused on whatever I could find regarding ALS, whether scientific, clinical, or anecdotal. No resource showed any hope.
Then I spent two years analyzing the findings of hundreds of papers published in academic libraries, including foreign languages, since Lou Gehrig’s death. Lou was only 37 when he succumbed to ALS, the disease that now bears his name.
My hero, Steven Hawking, was the longest-living person with this disease, defying his doctors' predictions. He lived 55 years after being diagnosed at 21, as you might have seen in the movie The Theory of Everything.
Dr. Hawking died in 2018 at 76, breaking the exceptional record and giving us hope on how self-care and the use of brain-computer interface technology might protect us and extend our health/life span, as I documented in the attached article.
Like Dr. Hawking, my father’s mind remained razor-sharp until his last breath. However, his once-agile body had become an immovable shell. His respiratory system had failed him, leaving him gasping for air.
Despite his cognitive abilities, his ability to speak deserted him in the third year. In his final year, we knew he was preparing to depart, but his labored breathing made it impossible for him to utter his farewell.
We could only communicate with him through his sorrowful gaze, which conveyed his disappointment with an unexplainable life that had stripped him of his mobility and independence.
Due to the genetic component of this disease, our compassionate neurologist tested my siblings and me. He confirmed that we didn’t carry any indicators.
However, he cautioned us that it didn’t mean we were immune as we aged. He provided practical advice on reducing the risk of developing this condition.
I have compiled them in this article. This information is the primary purpose of sharing my father’s sad story.
According to ALS Association, every 90 minutes, someone is diagnosed with the disease, and someone passes away from it.
Around 5,000 people in the U.S. are diagnosed with ALS yearly — around 10% experience genetic mutations. Interestingly military veterans develop ALS twice more than others, giving us some clues I will cover in the following sections.
What is ALS, and why does it matter?
ALS is a motor neuron disease. It stands for “Amyotrophic Lateral Sclerosis.” It is publicly known as Lou Gehrig’s disease, as this legendary baseball player was diagnosed with ALS in 1939. Then it was recognized as an impactful disease by the mainstream.
However, French neurologist Professor Jean-Martin Charcot correctly identified ALS in 1869. He named it referring to a greek word meaning “without nourishment to muscles.”
Seventy-two years, nothing notable in medical history happened regarding this deadly disease. And another 84 years after Lou’s death, we still have no cure for this disease. Here’s the summary of ALS history.
ALS is a progressive neurodegenerative disease affecting brain and spinal cord nerve cells.Although it is a neurological disease and impacts the brain, ALS does not adversely affect the function of the cognitive system like intellect, thinking skills, and senses like seeing, hearing, or smelling.
As happened with my father, the first symptom is weakness in a limb that develops within a few weeks and becomes noticeable.
Then in a few months, tripping and falling happen out of nowhere. It was the most debilitating symptom for my father, so we always walked holding his arm to prevent falls.
Other symptoms are twitching and cramping of muscles, loss of motor control in the hands and arms, impairment in using them, increased fatigue, slurred or thick speech, trouble projecting the voice, and uncontrollable periods of laughing or crying.
After two years, the most common symptoms in the father’s situation were not being able to walk anymore, dropping spoons while eating, sleep disturbances, getting too emotional remembering childhood memories, and constant crying with hopelessness breaking our hearts. He was a strong man who never cried in front of his children.
ALS can affect people regardless of race, ethnicity, sex, or socioeconomic status. It is more common in men than women. 93% are Caucasians. Symptoms commonly develop between 40 and 70. It is most common among people 60 or older. Around 10% of patients are younger than 45.
Treatment of ALS only involves managing and minimizing symptoms. Patients need help with personal care, eating, and mobility.
John Hopkins Hospital informs patients, “Use of the medicine may prolong your life by a few months, particularly if you have trouble swallowing. Discuss ways to make living spaces more accessible and use mobility devices and wheelchairs. It’s very important to discuss end-of-life decisions with your loved ones.”
We received the same advice around two decades ago, so unfortunately, science made not much difference in dealing with the disease.
There is currently no cure for ALS. However, some treatments are available. For example, there are a few FDA-approved drugs. A promising drug was developed in Japan in 2022 but is expected to be publicly available in the next six years.
The first one is riluzole which my father used and did not notice much improvement. It was costly in those days as we had to order it from the US. I don't know how expensive they are nowadays.
The second one is edaravone, approved in 2017. The third one is thickened riluzole, similar to the first one approved in 2018. The next one is the riluzole oral film approved in 2019.
Another drug approved in 2011 called Nuedexta specifically addressed symptoms of involuntary laughing and crying. It was not available during my father’s sickness.
In addition to the cost of drugs, the main cost is equipment for mobility and home healthcare with a dedicated team of carers 24/7. We spent nearly a million dollars on my father’s care in four years.
After this background information, I’d like to outline the key patterns contributing to the development of the disease based on my years of research.
I wrote about these factors in different stories in the last three years, but they didn’t gain noticeable visibility. I hope this story gains visibility, so readers consider these critical factors as a preventative measure.
6 Patterns After Deeply Researching ALS Disease
Many factors are associated with ALS, but I only focus on six patterns well-documented in literature through clinical and observational studies.
1 — Oxidative Stress and Chronic Inflammation
I mention oxidative stress in all my stories related to health and well-being, as it is a root cause of many disorders. It can lead to chronic inflammation, another major cause of multiple ailments.
Oxidative stress occurs when there is an imbalance between the production of reactive oxygen species (ROS) and the body’s ability to detoxify them. ROS can damage cellular components like DNA, mitochondria, proteins, and lipids. They can contribute to the degeneration of motor neurons.
Lowering oxidative stress via lifestyle factors such as a healthy diet, regular exercise, restorative sleep, and timely recovery is possible.
However, a common strategy for mitigating oxidative stress in ALS is to target cellular mechanisms that regulate the production and clearance of ROS.
Researchers heavily investigate drugs that can activate antioxidant pathways in cells and develop drugs that can reduce inflammation without side effects.
There are many stress management and anti-inflammatory drugs, but they create substantial health risks.
I specifically focus on naturally improving glutathione which is the master antioxidant for the body.
From my experience, ketosis is an effective and natural way to lower inflammation in six ways. And meditation is an effective way to lower stress by impacting our genes and neurotransmitters.
2 — Glutamate Toxicity
I introduced glutamate, a critical neurotransmitter, in an article: “A Biochemical Exciting Your Neurons for Better Memory and Learning, Yet!”
Optimizing this excitatory neurotransmitter can improve cognitive function and mental health, yet its dysfunction can cause severe health issues like ALS.
Glutamate is a neurotransmitter essential for normal brain function. However, in ALS, there is an overactivation of glutamate receptors, leading to the accumulation of toxic levels of glutamate in the synapses between neurons. This can cause damage to the motor neurons, leading to their degeneration and death.
Mitigating glutamate toxicity in ALS is to target glutamate receptors directly. For example, riluzole treats ALS as it inhibits glutamate release from neurons.
Scientists also work on developing strategies targeting cellular mechanisms that regulate glutamate uptake and clearance and develop drugs that can protect motor neurons from the toxic effects of glutamate.
3 — Mitochondrial Dysfunction
I wrote multiple articles about mitochondrial health from different angles, including mitophagy, mitochondrial coupling, mitohormesis, and tips for caring for them and making them denser.
Mitophagy refers to the removal of dysfunctional mitochondria using a process called autophagy. This process eliminates damaged mitochondria and improves cellular homeostasis.
Mitochondrial uncoupling refers to sharing the load by moving protons from the mitochondrial matrix to the mitochondrial intermembrane space.
Scientists hypothesize that mitochondrial uncoupling can protect our cells from conditions that favor the production of reactive oxygen species.
Mitochondria create low doses of reactive oxygen species as a signaling molecule to initiate cellular events aiming to protect the cells from the damaging effects of other events. This process is known as mitohormesis.
The most critical factor for survival is energy. Life can lose meaning if the body cannot produce the required power. Mitochondria are tiny organelles responsible for energy production.
Mitochondrial dysfunction can also lead to the impairment of cellular processes, which can contribute to neurodegeneration.
In ALS, there is evidence of mitochondrial dysfunction, which can lead to the generation of ROS and the accumulation of misfolded proteins.
Mitigating mitochondrial dysfunction in ALS includes targeting cellular mechanisms that regulate mitochondrial function and biogenesis.
Lifestyle factors can promote mitochondrial health. However, scientists work on medication that can stimulate mitochondrial biogenesis to protect mitochondria from damage and improve their function.
4 — Protein Aggregation
Protein aggregation is a critical factor in the development of ALS. In healthy cells, proteins are folded into specific shapes that allow them to perform their functions properly.
However, some proteins, such as TDP-43, become misfolded and clumped together in ALS. They form aggregates that can be toxic to cells. These aggregates comprise misfolded proteins, which cannot function properly and lead to cell death.
Recent studies indicate that “almost all cases of ALS, as well as dementia, share a common neuropathology characterized by the deposition of TAR-DNA binding protein (TDP-43) positive protein inclusions, offering an attractive target for the design and testing of novel therapeutics.”
A potential strategy for mitigating protein aggregation in ALS is targeting the misfolded proteins and the cellular mechanisms contributing to their aggregation.
Scientists investigate using small molecules that can bind to misfolded TDP-43 and prevent it from aggregating.
Another strategy is targeting molecular chaperones (proteins) that help fold and maintain other proteins' proper structure.
5 — Genetic Mutations
Literature indicates several genetic components that can affect the development of ALS. These genetic components can be divided into sporadic ALS and familial ALS.
About 90% of ALS cases are sporadic. They are not inherited. Familial ALS is caused by mutations in specific genes inherited from parents. Mutations in these genes might cause motor neuron death.
As documented in this paper, “more than 20 genes have been associated with ALS. The most common genetic cause is a hexanucleotide repeat expansion in the C9orf72 gene, responsible for 30%-50% of familial ALS and 7% of sporadic ALS.”
Sporadic ALS accounts for most cases of ALS. It is believed to result from a combination of genetic and environmental factors. Two associated genes are C9orf72 and SOD1.
An estimated 10 percent of ALS is familial and caused by mutations in one of several genes, like C9orf72, SOD1, TARDBP, and FUS. I will cover the details of these genes in another article.
The mechanisms by which these genetic components contribute to ALS's development are still nascent, with intense studies conducted by scientists.
However, hypotheses indicate that mutations in these genes may produce abnormal proteins toxic to motor neurons and other cellular processes that can contribute to motor neuron death.
6 — Emotional Aspects
I left this to the end as the emotional aspect of neurodegenerative diseases like ALS is less spoken about for unknown reasons in scientific communities, although they are intuitively evident and uncovered by medical doctors.
In his much loved yet contentious book “When the Body Says No: The Cost of Hidden Stress,” Dr. Gabor Mate informs that the dangers of suppression and repression of healthy anger lead to autoimmune diseases and cancer while going into rages, which is the polar extreme, leads to heart disease.
Psychologists inform a healthy way to deal with anger is crucial to health. The healthy way to deal with anger is “to notice it, accept the feeling, and talk to someone willing to listen to our angry feelings.”
I specifically mention anger, as my father never dared to talk about his anger, even though it was noticeable from his body language. He always suppressed it and considered it shameful to disclose his anger.
During my research, I noticed that unpleasant emotions and emotional traumas that are not expressed could affect the nervous system in various ways.
Traumatic experiences might cause the amygdala to become hyperactive, leading to an overactive stress response. I summarized it in a story titled negative effects of amygdala hijacks.
Unpleasant emotions might cause dysregulation of the HPA axis, resulting in a persistent stress response and an increased risk of chronic illness, such as autoimmune disorders. ALS is an autoimmune disease.
People who have experienced childhood abuse but have not expressed their emotions about it may have a hyperactive amygdala and dysregulation of the HPA axis. Studies indicate that traumatic experiences can cause adverse epigenetic changes.
What does this article mean to my readers?
I wrote this story to highlight the importance of preventative measures to lower the risks of ALS using holistic health principles.
When ALS starts, there is no cure, and lifespan is incredibly low apart from a few exceptions like Hawking, who had exceptional care from the medical community and the support of the Royal Family for half a century.
Even though autoimmune disorders like ALS have a genetic component, most factors are related to lifestyles, environment, and unpleasant emotions.
The critical environmental factors are refraining from toxins and pathogens, including tobacco smoking, drugs, and excessive alcohol.
It is vital to eliminate toxic substances from the body by naturally detoxifying cells through autophagy and mitophagy.
Fundamental lifestyle factors are a healthy diet, regular exercise, restorative sleep, stress management, rest, timely recovery, mindful living, improved relationships, social connections, and fun.
Additionally, emotional regulation is a crucial factor. After my father’s death, I met many people with ALS. They lacked emotional expression. Suppressing emotions is the root cause of physical and mental disorders.
Focusing on environmental and lifestyle factors might lower the risks of developing autoimmune conditions.
We cannot do much about our genes yet. However, healthy lifestyle habits can initiate epigenetic effects turning off problematic genes and turning on healing genes.
Customizable Takeaways for Prevention
We cannot cure ALS, but we might lower risks with healthy lifestyle habits to prevent the disease from happening.
1 — Accept any situation by not resisting, denying, or catastrophizing it.
2 — Consume nutrient-dense food, including essential amino acids from biovailable protein sources, minerals, vitamins, and healthy fats like omega-3 fatty acids.
3 — Detoxify the body by perspiring via dry saunas and initiate autophagy.
4 — Make the body insulin sensitive, fat adapted by entering ketosis via time-restricted eating, ketogenic diets, or fast-mimicking diets.
5 — Get restorative sleep, recover timely, manage stress well, and address chronic inflammation.
6 — Go out, connect with nature, keep the body moving regularly activating the lymphatic system via trampoline and other joyful workouts, and refrain from a sedentary life.
7 — Optimize hormones and neurotransmitters.
8 — Improve cellular, mitochondrial, immune, and gut health and follow the longevity principles.
9 — Express your emotions, set emotional boundaries, improve your relationships, have fun, and enhance your social connections.
10- Get checked regularly and address health conditions timely with professional support.
Thank you for reading my perspectives. I wish you a healthy and happy life.
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Thank you for reading my perspectives. I wish you a healthy and happy life.
As a new reader, please check my holistic health and well-being stories reflecting my reviews, observations, and decades of experiments optimizing my hormones and neurotransmitters. I write about health as it matters. I believe health is all about homeostasis.
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