ALS (Amyotrophic lateral sclerosis)
ALS is a progressive neurodegenerative disease that affects about 20,000 Americans. About 5-10% of U.S. cases are inherited. It impacts the functioning of motor neurons, which are the nerve cells that control muscle movement, and can eventually take away the ability to walk, write, speak, and swallow. As with most progressive diseases, the onset of these symptoms is gradual. You might be familiar with ALS, or amyotrophic lateral sclerosis, from Pete Frates’s #icebucketchallenge and high-profile patients, like baseball player Lou Gehrig and theoretical physicist Stephen Hawking. In recent years, awareness for this condition has surged, and scientists have been discovering more and more about this disease. There are currently several drugs approved to treat ALS, and research is being conducted all over the world to develop more treatments—and even a cure. There are also many approaches, from diet changes to physical therapy to supplements, that can help people manage symptoms and make living with ALS a little easier. Some of the most popular alternative and complementary therapies include special diets (people with ALS are at high risk for malnutrition, because when their disease makes self-feeding difficult), nutritional supplements, cannabis, acupuncture, chelation, and energy healing. Although the research is limited, both pre-clinical and clinical studies have been conducted on natural remedies for ALS such as co-enzyme Q10, creatine, L-carnitine, omega-3s, vitamins (especially A, C and D), and others. Most of these potential treatments have antioxidant properties, and some may be potentially beneficial for people with this condition.
Videos about ALS (Amyotrophic lateral sclerosis)
Books about ALS (Amyotrophic lateral sclerosis)
Hold On, Let Go: Facing ALS with courage and hope
This “stay positive in difficult times” story is about a man with ALS (also known as Lou Gehrig’s disease) and his wife who writes about their inspiring journey in her blog called ALS With Courage. In Hold On, Let Go, Nadine Sands expands on her blog, which takes her readers from pre-diagnosis to Michael’s complete paralysis, and reflects throughout on her husband’s strength and determination; on their hope and faith in God; and the sorrow and joy of learning to let go. “Mike has let go of working, walking, talking, eating, moving, and slowly he lets go of breathing. And I am letting go of him.… With each loss, we gain; by losing so much, we have more than we could imagine.” Follow Nadine as she learns to savour every moment, to give thanks in all circumstances, and to cherish the love. “Our love would never have known these depths had Mike been taken away suddenly. Instead we were given three to five years to rejoice, pray, and give thanks together every day.”
We Laughed 'til We Cried: Living, Loving and Laughing with ALS
No one thought anything about the limp that Don Strahorn began to walk with in the Spring of 2006. But as the months passed and the limp got worse, it became clear something was going on. At the beginning of 2007, the Strahorn family got news that would change them forever; Don had ALS-a disease with no cure. We Laughed 'til We Cried is the story of the seven years following Don's diagnosis, told by his wife, Lynda Strahorn. This isn't your regular diagnosis story, however. This memoir-esque account of what may have been a family's darkest times is full of as much laughter as it is tears. It serves as a testament to the way we all have choices to make when we get devastating news. The Strahorn family, although heartbroken, shows us how to make the most out of the hand we're dealt. Not only is this an inspirational book for anyone facing similar circumstances, it is also a call for a cure and a handbook for all those who will hear the same words Don Stahorn did in early 2007; "you have ALS." Author Lynda Strahorn offers insights into the many processes of dealing with ALS, from the slow progression of the disease and what each new stage entails for an ALS patient, to the emotional impact the disease has on the entire family. Lynda also offers some advice that she learned from her own experiences dealing with the disease, and she explains the way faith carried her family through the most difficult time they ever faced. Mostly, Lynda teaches readers how to laugh when they want to cry, to know when it is time to cry, and how to trust in Jesus through it all.
Amyotrophic Lateral Sclerosis: A Guide for Patients and Families: Third Edition
ALS, also known as Lou Gehrig's disease, cannot be cured but it can be treated. A great deal can be done to treat the symptoms of ALS, to improve an individual's quality of life, and to help families, caregivers, and loved ones to cope with the disease. This extensively revised and rewritten new edition of the bestselling Amyotrophic Lateral Sclerosis: A Guide For Patients and Families addresses all of those needs, and brings up-to-date important information to those living with the reality of ALS. The book is completely revised throughout and contains NEW information on: Recently developed approaches to treating ALS symptoms Use of non-invasive ventilators Multidisciplinary team care New guidelines being developed by the American Academy of Neurology for patients with ALS The use of riluzole (Rilutek) to treat ALS Amyotrophic Lateral Sclerosis covers every aspect of the management of ALS, from clinical features of the disease, to diagnosis, to an overview of symptom management. Major sections deal with medical and rehabilitative management, living with ALS, managing advanced disease, end-of-life issues, and resources that can provide support and assistance in this time of need.
Until I Say Good-Bye: A Book About Living
In June 2011, Susan Spencer-Wendel learned she had amyotrophic lateral sclerosis (ALS)—Lou Gehrig's disease—an irreversible condition that systematically destroys the nerves that power the muscles. She was forty-four years old, with a devoted husband and three young children, and she had only one year of health remaining. Susan decided to live that year with joy. She quit her job as a journalist and spent time with her family. She built an outdoor meeting space for friends in her backyard. And she took seven trips with the seven most important people in her life. As her health declined, Susan journeyed to the Yukon, Hungary, the Bahamas, and Cyprus. She took her sons to swim with dolphins, and her teenage daughter, Marina, to Kleinfeld's bridal shop in New York City to see her for the first and last time in a wedding dress. She also wrote this book. No longer able to walk or even to lift her arms, she tapped it out letter by letter on her iPhone using only her right thumb, the last finger still working. However, Until I Say Good-Bye is not angry or bitter. It is sad in parts—how could it not be?—but it is filled with Susan's optimism, joie de vivre, and sense of humor. It is a book about life, not death. One that, like Susan, will make everyone smile. From the Burger King parking lot where she cried after her diagnosis to a snowy hot spring near the Arctic Circle, from a hilarious family Christmas disaster to the decrepit monastery in eastern Cyprus where she rediscovered her heritage, Until I Say Good-Bye is not only Susan Spencer-Wendel's unforgettable gift to her loved ones—a heartfelt record of their final experiences together—but an offering to all of us: a reminder that "every day is better when it is lived with joy."
Podcasts about ALS (Amyotrophic lateral sclerosis)
ALS Podcast - Series
Stories from The ALS Association Greater Philadelphia Chapter about people with ALS, family members, ALS research, events, advocacy, and fundraising.
Sawbones: ALS and the Many Disease of Jean-Martin Charcot
This week, Dr. Sydnee and Justin mark the passing of Stephen Hawking by discussing the disease that shaped his life and the unusual, prolific physician that discovered it.
Learn True Health: Autoimmunity and Neurology, Why Your Brain Is Affected By Inflammation and What You Can Do About It Hashimoto's Disease, ALS, Parkinson's, MS
Many people suffer from autoimmunity. But because sometimes the symptoms can be confusing, people fail to seek immediate treatment for autoimmunity. My guest today, Dr. Jared Seigler has an amazing story on how his journey led him to help people address autoimmunity conditions. Stumbled By Accident Dr. Jared Seigler relates that he stumbled into functional medicine by accident. It started when his wife was struggling to conceive for years because she was suffering from PCOS. After almost five years of searching for answers, they were even contemplating on adopting a child. But Dr. Jared Seigler refused to give up mainly since his wife was just 23 years old at the time. He was even subjected to a stool test wherein they found parasites so Dr. Jared Seigler also underwent treatment. After years of searching for answers and countless treatments, the couple was finally blessed with a daughter who is now five years old. Helminth Parasites Helminths are parasitic worms, and parasites are known manipulators of the immune system. The first time Dr. Jared Seigler got exposed to it was six years ago when one of his lupus patients called him. That patient claimed to feel better because of her dog’s licks. She was not taking any drugs nor any supplements. “What good parasites can do, is act like a probiotic for the parasite. As they manipulate the immune system to hide from it, so the immune system doesn’t attack it, they also suppress the immune system that is causing autoimmunity,” Dr. Jared Seigler said. He adds, “I’m not anti-parasite. When I look autoimmunity and probiotics research, it’s a hit or miss. There is even research showing that for example, Crohn’s is due to the immune system in some cases, losing tolerance to normal bacteria.” But Dr. Jared Seigler clarifies that when we see someone being given a beneficial parasite consistently, that can take away a lot of autoimmune symptoms. He says dead bacteria behaves utterly different than a live bacteria. Some of the most potent stimulators of inflammation in the gut are dead bacteria that they use in the modern dairy industry. The Truth About Milk Dr. Jared Seigler believes the gut has to quit getting colostrum from mother’s milk. Hence, a mom has to stop breastfeeding for the gut to grow. “The premise that we need milk for health has been purely built on BS. The research goes the other way,” explains Dr. Jared Seigler. “Technically, when you look at it on a big enough scale, 100% of the world is lactose-intolerant. It takes five gallons of milk a day or a sip to be able to reset intolerance of sugars in the milk.” Understanding Autoimmunity Dr. Jared Seigler readily shares that he has autoimmunity as well as his wife. So, he clearly knows he can’t go back to eating the way he used to eat. Dr. Jared Seigler is also aware that he is not perfect just because he has changed his lifestyle to a healthier one. But he loves being a work in progress. That is why his passion lies in also helping people get their bodies to a place where they can heal. “With the whole premises of autoimmunity, there’s the genetic susceptibility component. I truly don’t believe the immune system makes a mistake with autoimmunity,” said Dr. Jared Seigler. “I believe the immune system is being tricked and overwhelmed in that scenario.” He adds, “Once the immune system recognizes it as a problem, we have to think about what is driving certain things for autoimmunity like molecular mimicry. For molecular mimicry, the immune system initially recognizes something bad like identifying characteristics. Once it progresses, it can start epitope spreading.” Human Microbiome Project T
- National Institute of Neurological Diseases and Stroke (NINDS). Amyotrophic lateral sclerosis (ALS) National Institute of Neurological Diseases and Stroke (NINDS). Amyotrophic lateral sclerosis (ALS)
- Neurol Clin. Complementary and Alternative Therapies in ALS. Neurol Clin. Complementary and Alternative Therapies in ALS.
- J Clin Invest. Emerging mechanisms of molecular pathology in ALS. J Clin Invest. Emerging mechanisms of molecular pathology in ALS.
- Neurology. Practice parameter update: The care of the patient with amyotrophic lateral sclerosis: Drug, nutritional, and respiratory therapies (an evidence-based review): Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. Practice parameter update: The care of the patient with amyotrophic lateral sclerosis: Drug, nutritional, and respiratory therapies (an evidence-based review): Report of the Quality Standards Subcommittee of the American Academy of Neurology.
- J Herbal Therapy. The use of herbal supplements and alternative therapies by patients with amyotrophic lateral sclerosis. J Herbal Therapy. The use of herbal supplements and alternative therapies by patients with amyotrophic lateral sclerosis.