How Terminally Ill ALS Patients Took Medical Treatment Into Their Own Hands

ALS, or Amyotrophic Lateral Sclerosis, is a devastating disease that affects the nerve cells responsible for controlling voluntary muscles. It is a progressive neurodegenerative disease that leads to muscle weakness, loss of mobility, speech difficulties, and eventually, respiratory failure. Currently, there is no known cure for ALS, and the available treatments only aim to manage symptoms and slow down the progression of the disease.

However, many terminally ill ALS patients have decided to take their medical treatment into their own hands, searching for alternative solutions and experimental therapies that could potentially offer them hope and a chance at a better quality of life.

Personal Trials: How Terminally Ill ALS Patients Took Medical Treatment Into Their Own Hands (Kindle Single)

by Timothy Palzkill (Kindle Edition)

4 out of 5

Language	:	English
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One such patient is John Turner, a 42-year-old father of three who was diagnosed with ALS three years ago. Faced with the grim prognosis and the limited options available, John started researching alternative treatments and experimental drugs that could potentially slow down the progression of his disease.

John's search led him to a group of ALS patients who have become pioneers in their fight against the disease. These patients are actively involved in advocating for ALS research, raising funds for experimental treatments, and even participating in clinical trials for promising therapies.

One of the most remarkable stories within this community is that of Susan Anderson, a 35-year-old ALS patient who decided to undergo experimental stem cell therapy. Stem cell therapy holds great promise for ALS patients, as it aims to restore and regenerate damaged nerve cells. However, it is still in its early stages of development, and the long-term effects are yet to be fully understood.

Susan's decision to undergo stem cell therapy was not taken lightly. She consulted with multiple specialists, attended seminars on the topic, and spoke with other ALS patients who had already undergone the treatment. After careful consideration and with the support of her family, Susan went ahead with the therapy.

Months after the procedure, Susan began experiencing small improvements in her condition. Her muscle strength improved, the progression of her disease slowed down, and she regained some of her lost mobility. While the results were not a complete cure, they provided Susan with a renewed sense of hope and motivation to continue fighting.

Another patient, James Anderson, decided to explore natural remedies and alternative therapies to supplement his conventional ALS treatment. He embraced a holistic approach, incorporating dietary changes, herbal supplements, and even acupuncture into his routine.

James noticed small but significant improvements in his symptoms after adopting these lifestyle changes. His muscle spasms reduced, his fatigue levels improved, and he regained a sense of overall well-being. He believes that a combination of conventional medicine and alternative therapies has played a crucial role in managing his ALS and improving his quality of life.

These inspiring stories highlight the resilience and determination of ALS patients who refuse to accept the limitations imposed by their disease. By taking medical treatment into their own hands, they have opened doors to new possibilities and potential breakthroughs in ALS research.

However, it is important to note that not all alternative treatments and experimental therapies have the same level of effectiveness or safety. It is crucial for ALS patients to consult with medical professionals, participate in clinical trials, and thoroughly assess the potential risks and benefits of any treatment option they consider.

The courage and initiative displayed by terminally ill ALS patients like John, Susan, and James have not only impacted their own lives but have also brought attention to the urgent need for further research and advancements in ALS treatment. Their stories serve as a reminder that the power of determination and the pursuit of hope can change lives and shape the future of medical treatments.

In , the journey of ALS patients who take medical treatment into their own hands is one of resilience, hope, and the relentless pursuit of a better quality of life. By actively participating in research, advocating for advancements, and exploring alternative treatments, these patients show that they are not defined by their illness, but rather by their determination to fight against it. Their stories serve as an inspiration for all those affected by ALS and demonstrate the power of the human spirit to bring about positive change.

Personal Trials: How Terminally Ill ALS Patients Took Medical Treatment Into Their Own Hands (Kindle Single)

by Timothy Palzkill (Kindle Edition)

4 out of 5

Language	:	English
File size	:	3776 KB
Text-to-Speech	:	Enabled
Enhanced typesetting	:	Enabled
Print length	:	70 pages
Lending	:	Enabled
Screen Reader	:	Supported

FREE

ALS is fatal. There is no cure. There is only one approved treatment, which extends the life span of ALS patients by an average of only three months. But one group of patients took their treatments into their own hands—fighting not just for their own lives, but for a disease community that for years has struggled to be heard. Personal Trials is the story of Ben Harris, Rob Tison, and Eric Valor, who joined dozens of other patients in meticulously researching experimental treatments and in dosing themselves with chemical substitutes. All the while, the patients tracked their results openly online—charting thrilling improvements and devastating physical decline—hoping their experiences would enlighten others and advance ALS research. Facing a frustratingly slow and opaque biomedical research system, they believed their most important work was to share their data with the world. As Ben always said, “If it is done in secret, it is done in vain.”

Jennifer “Jef” Akst is an editor at The Scientist magazine, where she has worked since she finished her master’s degree in biology at Indiana University in 2009. She writes about all things life science but has a special interest in patients who self-experiment with unproven treatments and track their results online. She refers to this phenomenon as do-it-yourself (DIY) medicine and has reported on how such DIY efforts could either hinder or accelerate traditional clinical research.

Cover design by Kerry Ellis