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Lou Gehrig’s Disease (+ 6 Ways to Help Manage ALS Symptoms)
February 1, 2018
ALS, also called Lou Gehrig’s disease, stands for amyotrophic lateral sclerosis. Early signs of Lou Gehrig’s disease can include muscle weakness, especially in the arms and hands, muscle atrophy, and trouble with speech and swallowing.
According to Johns Hopkins Medical School, approximately 5,600 people in the U.S. are diagnosed with ALS each year. (1) The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time.
Unfortunately, as of today there is no known cure for Lou Gehrig’s disease. Most people turn to conventional treatments to help manage Lou Gehrig’s disease/ALS, although there are also natural ALS treatments available that can reduce severity of symptoms and help with coping. In this article, I will share information regarding what we now know about the potential causes of Lou Gehrig’s disease, the signs and symptoms to be aware of, as well as the best foods and supplements for helping to improve quality of life.
What Is Lou Gehrig’s Disease?
Amyotrophic lateral sclerosis (ALS) is a rapidly progressive, degenerative neuromuscular disease. Amyotrophic lateral sclerosis describes how the disease causes muscle atrophy and also scarring or hardening (“sclerosis”) of lateral areas of a person’s spinal cord. (2) Even though ALS is one of the most common neurodegenerative diseases there is, researchers still don’t know a lot about how and why it develops.
Starting around 2014, ALS began gaining a lot of attention in the media through due to the “Ice Bucket Challenge,” a social media movement that had the goal of raising awareness and funds to fight ALS. (3) This fatal and debilitating disease was named Lou Gehrig’s disease after the famous Yankees’ baseball player who died of ALS in the 1940s.(4)
ALS affects the nervous system by slowly destroying motor neurons, which are found in the brain, brainstem and spinal cord. Lou Gehrig’s disease has some similarities to other motor neuron diseases, including primary lateral sclerosis, spinal muscular atrophy, and progressive bulbar palsy. Motor neurons allow for communication between the nervous system and muscles, which is why Lou Gehrig’s disease negatively affects voluntary control over muscular movements of the body. Motor neurons gradually degenerate due to ALS until they eventually die. Within a short period of time, Lou Gehrig’s disease patients lose the ability to walk, talk, speak, chew and swallow normally, and some suffer from trouble breathing and respiratory failure.
ALS Life Expectancy & Prognosis:
With recent advances that have been made, how long can someone expect to live with ALS? Research tells us that ALS life expectancy is about three years. Most people with ALS will live for about three to five years after their symptoms first appear. A smaller percentage of people will live between five to 10 years after receiving a diagnosis, and, rarely, some might even live up to 20 years with the disease. According to the Yale School of Medicine, “Patients older than 65 years at onset have a 50 percent mortality after 3 years, 20 percent live more than 5 years, 10 percent live more than 10 years, and few may live up to 20 years.” (5)
Stephen Hawking, a famous theoretical physicist and former professor at University of Cambridge, is well-known for having had ALS for decades and living past the age of 70. How has Stephen Hawking lived so long? It’s exactly clear why. Compared to other people with ALS, Hawking’s disease has progressed slowly and not impacted his respiratory function or nutrition as severely as others. When interviewed by Scientific America, Leo McCluskey, an associate professor of neurology and medical director of the ALS Center at the University of Pennsylvania, said that Hawking is an ” incredible, incredible example of the variability of the disease—and the hope for patients who have it that they could also live a long life.”
Signs & Symptoms of Lou Gehrig’s Disease
The most common symptoms of ALS include: (6)
- Weakness of the muscles, especially in the arms and legs. When symptoms first appear in the arms or legs it is called Limb Onset ALS. This is the most common pattern of symptoms. Most often weakness will start in the limbs and spread to involve all four extremities, the muscles of the trunk and abdomen, and the bulbar muscles of the face, mouth and throat.
- Atrophy, or muscle loss.
- Loss of volunatary muscular function.
- Muscle twitches, spasms, stiffness and pain.
- Inability to use the limbs for activities like walking, writing, eating, etc.
- Poor posture.
- Trouble chewing and swallowing. For some, the first symptoms they will experience are difficulty swallowing or eating. Over time this can lead to dehydration and malnutrition.
- Slurred speech and other problems speaking. When speech symptoms are the first to be experienced it is called Bulbar Onset ALS
- Lack of coordination, decreased balance, falling and tripping.
- Shortness of breath, and, in the advanced stages, eventually respiratory failure due to dysfunction of the diaphragm muscle. A common reason that ALS leads to death is due to respiratory failure.
Lou Gehrig’s Disease Causes & Risk Factors
What causes ALS? The majority of cases are said to occur “randomly,” as no identifiable causes of the disease can be found. In other words, it’s still unknown exactly why motor neurons begin to die in ALS disease patients. John Hopkins Hospital states that “In more than nine out of every 10 cases diagnosed, no clear identifying cause of the disease is apparent.” Even though it’s not entirely clear why Lou Gehrig’s disease develops, research shows that there are certain risk factors that are likely involved.
Recent research suggests that some of the risk factors and causes involved in ALS/Lou Gehrig’s disease include:
- Gene mutations
- Mitochondrial dysfunction
- Heavy metal toxicity
- Head and neck trauma
- Genetic predisposition
- Low levels of magnesium and calcium
- Antioxidant deficiency including SOD and glutathione
- Depletion of essential fatty acids
- Trouble digesting protein properly
- Low levels of vitamin E and vitamin B12
- Exposure to toxins including pesticides
- Problems with the immune system
- Smoking
- Serving in the military; people who have served in the military are at higher risk of developing ALS, although it’s unclear why
There are three types of ALS: familial, sporadic and Guamanian.
- Sporadic is the most common form of the disease by far, accounting for 90 percent to 95 percent of all cases in the U.S. Researchers are still uncertain as to what causes most cases of sporadic and Guamanian ALS.
- Is ALS genetic? Familial ALS is one type of the disease that is inherited (passed down genetically from parents to offspring). This is the least common form of ALS, occurring in only about 5–10 percent of cases. (7)
- There are several common conditions that accompany ALS and are theorized to be related to its development. Most people who develop ALS are between the ages of 40 and 70. The median age of onset for sporadic ALS is between 55–66, although some people will develop the disease earlier. Slightly more males are affected than females, although both genders, and people of all ethnicities, can develop ALS. After the age of 70 men and women have the same chance of developing ALS.
- People living in Guam and the Kii Peninsula in Japan develop ALS more frequently. (8) This type is also called Lytico-bodig disease, which is referred to by neuroscientists as amyotrophic lateral sclerosis-parkinsonism-dementia. Researchers have found that these islands’ native populations seem to be more susceptible to the disease and also that they develop ALS as part of a syndrome which includes dementia and Parkinson’s disease. (9)
Below is a bit more about some of the potential causes of Lou Gehrig’s disease:
1. Mitochondrial Dysfunction
Mitochondria, sometimes called the “powerhouse” of cells, are the energy-generating parts of all cells and brain tissue. When functioning properly mitochondria work to create cellular energy. However, in ALS, they stop functioning as they should. This can create large amounts of reactive oxygen or lactate production which causes cells and nerve tissue to degenerate and die. (10) When the cells die all the surrounding cells have to fight to maintain control and function. This further generates more lactate production and increases the cell death rate. If this holds true, then treatments with Co-enzyme Q10 and other nutrients that support mitochondrial function might be useful in slowing or even stopping this progressive illness.
2. Glutamate Toxicity
Glutamate is a critical neurotransmitter in the brain and is responsible for about 75 percent of brain and nerve function. In an ALS patient, however, there is a higher level of glutamate present in the space between the cells. (11) The extra glutamate may accelerate the motor neurons into functioning beyond their capacity, which could be the source of their die-off.
3. Super Oxide Dismutase (SOD)
In as many as 20 percent of the familial cases of ALS, there is a mutated gene called SOD1 that is known as superoxide dismutase (SOD). SOD is an enzyme that works to convert free radicals into less harmful molecules. Mutations in this gene seem to be present and potentially related to the excessive neuron death present in ALS patients.
4. Oxidative Stress (or Free Radical Damage)
Related possibly to the SOD enzyme malfunction, oxidative stress is present in both the central nervous system as well as other systems in ALS patients. Increasing the antioxidants in the body, and supplementing with vitamins C, E and selenium fights the excessive free radicals and could slow the muscle degrading and motor neuron death rate.
5. Toxin Exposure & Other Possible Causes
There have been numerous associations made between development of Lou Gehrig’s disease and exposure to toxic sources such as heavy metal exposure, pesticides and other chemicals. These toxins may create an environment that increases free radicals, promotes higher glutamate levels, and contributes to other factors that cause disease development.
- Lead — Lead is found as an additive in gasoline and paint. When a person is exposed by either breathing in lead vapor or by ingesting it, the lead can interfere with the cell membrane and mitochondrial function. When exposed to lead vapor, systemic lead poisoning can occur causing headaches, joint pain, short-term memory loss, fatigue, etc. A diet poor in calcium, iron and zinc can increase lead absorption.
- Mercury — Mercury, a heavy metal often found in amalgam silver fillings, some immunizations and in smaller amounts in tuna and swordfish, causes many toxic symptoms when ingested. Impaired peripheral vision, memory loss, slurred speech, muscle weakness, depression and delirium are just a few of the symptoms. Many ALS cases have occurred in countries that are known to have higher mercury exposure.
- Aluminum and Manganese — Concentrations of these substances have also been found to be higher in many cases of ALS cases. It is theorized that the inability of the body to process and eliminate metals like aluminum is based on lower-than-normal calcium and magnesium levels.
- Low Calcium and Magnesium — Low levels of these minerals have been found in some ALS patients. Studies have shown that when the environmental levels of calcium and magnesium are consistently low, that the absorption of heavy metals is increased.
- Pesticides — These chemicals were thought to be a possible cause of ALS in a high percentage of Italian soccer players who developed the disease. With pesticides, as well as other toxic sources, there has been a number of cases that seemed to be related to a toxic exposure. However, there has been no concrete research that can confirm this as a definite cause of the disease.
Conventional Treatments for Lou Gehrig’s Disease
For a person diagnosed with ALS, it can feel overwhelming. However, there are many treatment options available that can help to ease the symptoms and improve functionality.
- As mentioned above, there is no cure for Lou Gehrig’s disease. This means that ALS is considered a fatal and progressive disease.
- Doctors focus on helping ALS patients by providing palliative care and offering treatments such as physical therapy, breathing therapies, nutrition and emotional support for both the patient and their family and caregivers.
- Conventional ALS treatments include the use of exercise, stretching, occupational therapy to improve use of the limbs, and speech therapies. Sometimes these approaches are used along with more aggressive and invasive treatments that can include medication, feeding tubes and breathing devices if they are deemed necessary.
- In 2017 the FDA has approved Radicava™ (Edaravone), which according to the ALS Foundation is “the first new treatment specifically for ALS in 22 years.” The only other approved treatment specifically for ALS, called riluzole, was first approved in 1995. (12) Radicava has been shown in clinical trials to lead to significantly less decline in physical function compared to placebo. It is administered via intravenous infusion in 28 day cycles, involving about two weeks “on” the medication followed by 10–14 days “off.” (13)
Lou Gehrig’s Disease: 6 Natural Ways to Help Manage ALS Symptoms
1. Eat A Nutrient-Dense Diet
The first step of any restorative diet is to REMOVE all toxins and processed food from your diet. Remove all sugars (including artificial sweeteners), processed foods made with refined grains, hydrogenated oils, preservatives and other chemicals.
Next, add in a variety of nutrient-dense foods that will fight free radicals. Free radicals attack motor neurons, so reducing their effects by eating a healthy diet can help slow the decay process. Eating whole foods is very important because simply supplementing with nutrients does not mean that the body can necessarily absorb and use them properly. Eating unprocessed, nutritious foods is the best way for your body to receive and process nutrition. It is critical to eat foods rich in antioxidants and concentrated nutrients, as the body is made to absorb minerals and vitamins best in whole food form.
Some healing foods that help fight ALS conditions are:
- High antioxidant fruits — Antioxidants found in fruits help convert free radicals and super oxygen into less harmful molecules and support your body’s function. Some of the best fruits for providing antioxidants include goji berries, wild blueberries, acai berries, cranberries, blackberries and other berries.
- Vegetables — Veggies are a wonderful source of accessible nutrition. Foods high in antioxidants and minerals that help detox are leafy greens, artichokes, red beans or kidney beans (higher in antioxidants than even wild blueberries), spinach (also high in zinc), carrots, red peppers and mushrooms.
- Quality Protein sources — Organic sources of protein are best to avoid excess hormones and other chemicals. Choose grass-fed beef, free-range chicken, cage-free eggs, lamb, lentils, pecans, cashews and pumpkin/squash seeds.
- Healthy Fats — Good sources include coconut oil, cold-pressed olive oil, cultured butter or ghee and avocado. Coconut oil specifically is extremely healing to the body and works on several levels to boost your body’s natural defenses to disease. To read more on coconut oil check out my article on Coconut Oil Uses and Cures.
2. Exercise & Physical Therapy
Physical therapy (PT) and exercise are beneficial for people with Lou Gehrig’s disease because they can help improve mobility, strengthen muscles, facilitate with balance and coordination, decrease risk for falling and reduce muscle stiffness. One important benefit of PT for ALS is preventing contractures, or rigidity and shortening of muscles, tendons and other tissue. Some people with ALS will need to use orthotic devices and/or other assistive devices such as walkers or wheelchairs to get around, and PT can help them to get the most benefit from their devices.
How much exercise should someone with Lou Gehrig’s disease do? According to Massachusetts General Hospital:
In the past several years, some small research studies have shown that moderate exercise, both aerobic and light strengthening, may be beneficial. More research is needed (and is currently planned) to determine how much exercise is enough and how much is ‘too much.’ Based on what we currently know, it seems sensible to exercise with discretion and stop before reaching the point of exhaustion.”(14)
Exercises that are most suitable for people with ALS include low-impact types like swimming, pool exercises, light resistance training and cycling. Following exercise or PT, it’s a good idea to rest for 30–60 minutes to recover. Exercise should be balanced with breaks throughout the day to prevent over-exertion, pain, fatigue and soreness.
3. Occupational Therapy
A 2014 systematic review of the effectiveness of occupational therapy for people living with ALS found “limited to moderate evidence that people involved in multidisciplinary programs have longer survival than those in general care, and limited evidence that those in multidisciplinary programs have a higher percentage of appropriate assistive devices and higher quality of life in social functioning and mental health.” (15)
While every person’s experience is a bit different, occupational therapy can be very helpful for making activities of daily living easier for people living with ALS, such as bathing, chewing and swallowing, dressing, getting around, etc. The main goals of OT is to “help maximize mobility and comfort through equipment prescription, activity adaptation, patient and family education.” (16) Occupational therapists and physical therapists can both recommend devices that can help make everyday activities easier. These include wearing certain shoes/shoelaces, using special key turners, using special cooking equipment and utensils, wearing clothes with certain button and zipper aides, and using writing tools like special pens and keyboards.
4. Supplements
- Vitamin E and C — These antioxidants help support immune function, strengthen connective tissue, and generally help maintain the entire function of your body. Vitamin C also helps with glutamate uptake, so a deficiency in C could be creating the abnormally high glutamate levels that may contribute to nerve death. Vitamin E has been shown in certain studies to play a role in ALS prevention and potentially to be beneficial for managing symptoms. (17)
- B-Complex / Vitamin B12 — Vitamin B in all its forms is an important support for muscles, energy levels, and nerve function. Vitamin B-12 in the form of methylcobalamin has been found to help slow muscle loss.
- Calcium, Magnesium — Replenishing calcium and magnesium levels in the body helps with detoxification, which can be helpful for removing heavy metals and toxins from the body. These minerals work together to activate each other and also support muscle and bone health.
- Vitamin D — Vitamin D3 assists in calcium absorption, helps maintain bone mass, and can help improve mitochondrial function.
- Selenium — Selenium is a beneficial mineral that can help reduce mercury concentrations and counteract heavy metal effects in the body.
- Co-enzyme Q-10 (CoQ10) — CoQ10 is a powerful antioxidant and key component of mitochondrial function.
- Zinc — Zinc and copper are both present in the SOD1 Superoxide Dismutase gene. In ALS patients, the SOD enzyme leaches the zinc away leaving only copper, which can be toxic to motor neurons. While large doses of zinc can inhibit copper absorption, small amounts of copper with a moderate amount of zinc may help prevent neuron death. Taking a moderate amount of both minerals can possibly help stabilize ALS symptoms.
- Fish Oil — Rich in omega-3s and essential fatty acids, fish oil is one of the best ways to reduce inflammation in the body. It restores brain health and helps boost your immune system.
5. Emotional Support (Including For Caregivers)
Lou Gehrig’s disease is a very difficult disease to cope with, affecting not only the patient, but also their family, friends and caregivers. Many people with ALS struggle emotionally and also find it hard to sleep, rest and relax. Pain can also worsen sleep and contribute to decreased quality of life.
For help with managing stress, depression or anxiety it can be very helpful to work with a therapist trained in cognitive behavioral therapy. There are many difficult decisions to make when coping with ALS, so having someone to speak to can lessen the burden and serve as a valuable outlet. Joining a support group is another way of coping with difficult feelings. The ALS Association offers information about joining support groups on their website. They state that support groups are:
A forum to share information and practical experience, whether it’s learning how to improve physical function, discussing new drug trials, or experiencing the latest augmentative technologies all geared to helping you live more fully with the disease … They are a safe place to allow your emotions to speak for you.
6. Sleep & Rest
Dealing with ongoing fatigue, and at the same suffering from insomnia, are two complaints among people with Lou Gehrig’s disease. Trouble sleeping or staying asleep can be caused by a combination of discomfort, pain, respiratory weakness, anxiety and/or depression. Natural sleep aids that can help to support restful sleep include:
- Being active during the day, which makes you sleepier at night.
- Aromatherapy, such as with relaxing essential oils like chamomile.
- Eating foods that increase serotonin and melatonin, such as unrefined carbohydrates like 100 percent whole grain oats, brown rice, corn or quinoa.
- Taking magnesium before bed.
- Sticking to a normal sleep-wake schedule to help with circadian rhythm functions.
- Drinking relaxing tea.
- Taking a warm bath.
- Taking calming herbs such as valerian root and St. John’s wort (it’s best to ask your doctor first before taking any supplements).
If pain is interfering with sleep and wellbeing, try incorporating natural painkillers such as:
- Lavender and peppermint essential oil, which can be used to make a homemade muscle rub recipe.
- Massage therapy and acupuncture, which are stress-relieving and also capable of decreasing muscle stiffness or pain.
- Epsom salt baths, which provide magnesium and help to reduce joint or muscular pain.
- As long as a physical therapist or doctor feels it’s appropriate, foam roller exercises and self-myofascial release to loosen stiff muscles.
Precautions Regarding Lou Gehrig’s Disease
Because Lou Gehrig’s disease is rapidly progressing it’s best to visit a doctor right away if you experience any signs or symptoms. Talk to your doctor about changes in your balance, muscular control, speech, mobility and posture. You should also discuss any family history you might have and other risk factors such as smoking, toxin exposure, etc.
Key Points About Lou Gehrig’s Disease
- Amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease, is a rapidly progressive, degenerative neuromuscular disease that affects motor neurons.
- Signs and symptoms of Lou Gehrig’s disease include weakness in the arms and legs, slurred speech, muscle atrophy, loss of balance, pain, muscle twitching and poor posture.
- There is no cure for ALS, since it is a fatal, progressive disease.
- Some natural ways to manage ALS symptoms include physical therapy, occupational therapy, exercise, a healthy diet, stress reduction, CBT therapy and supplements.