ALS is a painful terminal illness. With campaigns such as the Ice Bucket Challenge in recent years, more awareness has been brought to the disease. If you or someone you love has been diagnosed with ALS, we’ve rounded up some helpful information on ALS symptoms, treatments, and more.
While there is no cure for ALS, there are some medications and treatments available to help manage symptoms and pain. Without a cure, treatment often includes ways to slow the progression and make life more comfortable. Let’s jump into some common symptoms and treatments to help those affected by ALS.
The Definition of ALS
Amyotrophic Lateral Sclerosis (ALS) is a motor neuron disease. This neurodegenerative disease attacks and deteriorates the portions of the brain that control the body’s voluntary muscles. The disease progression varies greatly from patient to patient. Some people may live for years after their initial ALS diagnosis. Other patients will ALS are only given months to live.
Currently, there is no cure for ALS. Therapies and treatments may help slow the onset and help maintain the quality of life in some patients. While the exact cause of ALS is unknown, genetics and lifestyle factors may play a role. Age may also help slow the progression of the disease.
Because there is no exact cause, diagnosis is often a long and difficult process. People often begin noticing early signs of ALS before a diagnosis is given. Genetic testing may help doctors determine which variation of ALS a patient has if someone in their family had the disease.
ALS is a difficult disease to diagnose for several reasons. To start, symptoms are different for every patient. Symptoms are also often the same as other diseases. When symptoms first appear, other diseases need to be ruled out before an ALS diagnosis is given.
Common ALS symptoms include muscle twitching, muscle cramps, trouble breathing, and swallowing, as well as muscle weakness. You may notice one arm or leg affected by muscle weakness first. Abnormal and slurred speech are also early signs of ALS.
Patients may start to notice trouble swallowing, loss of voice, and difficulty speaking. Some of these symptoms are also found in multiple sclerosis, neuropathy, spinal tumors, and herniated discs. A neuromuscular disease specialist will observe your nerves and perform and electromyography or EMG to rule out other diseases.
What Causes ALS?
The exact cause of ALS is still unknown. Genetics are believed to be a factor. There may also be some lifestyle factors that play a role.
Almost all cases of ALS are thought to be sporadic. About 5-10% of the cases of ALS are genetic. This means the disease was inherited from a parent. Over a dozen gene mutations are thought to cause familial or genetic ALS.
Stephan Hawking is one of the most famous examples of someone living a nearly full life with the disease. The world-renowned scientist was diagnosed at 21 years old and lived for 55 years until he passed away at the age of 76. Experts believe Hawking had a form of ALS that is slow to progress.
Hawking was also thought to have had a greater quality of life due to the medical care he received. Hawking had resources to provide top medical care 24/7. Because Hawking was diagnosed with ALS at such a young age, this may have also contributed to his long life span.
Is ALS Preventable?
Unfortunately, ALS is not preventable. Research is currently being done to determine if stress, environmental factors, or exposure to certain toxins has contributed to an ALS diagnosis. Veterans and professional athletes have been shown to be slightly more at risk for ALS than the general population.
The link between veterans and ALS is still being studied. Researchers believe there could be a connection between environmental stress, head trauma, and physical activity. Being white, male, and older are also common traits for many ALS patients.
There is currently no known cure or way to slow the progression of ALS. Treatment plans involve keeping patients comfortable and helping to manage symptoms. None of these treatments are effective in preventing ALS, however.
Those whose parents or close family members have had ALS are often encouraged to have genetic screening done. This will help determine the risk level for ALS or other genetic mutations. Younger ALS patients may live longer with the disease. They may also see a slower progression because their muscles and strength are in better shape than an older or elderly adult.
Because there is no cure for ALS, treatments are critical in giving patients a better quality of life. Treatment plans often include medical and physical therapies to slow the progression. Patients may also try clinical trials to see if any new medical treatments and therapies are effective.
Treatment plans are aimed to help manage symptoms and improve a patient’s quality of life. Medications may be prescribed to help with muscle cramps and muscle pains. There are also medications to help with excess saliva, involuntary expressions, depression, and anxiety.
Nutritional counseling is also a big part of managing ALS care. Many patients won’t be able to swallow as the disease progresses. Eating, chewing, and swallowing will become difficult. Nutritionists and gastrointestinal specialists will help give guidance on what to eat or feed using a feeding tube.
Physical and Speech Therapy
While there is no way to reverse the progression of ALS, there are some therapies that may help patients with a slower progression. Physical and occupational therapies may help your muscles remember how to work as they once did.
Certain therapies also help with muscle spasticity. A common symptom of ALS is muscle spasms. Muscles may also become stiff and unable to move.
Speech therapists are also used to help treat ALS. There are certain therapies you can do to help you with swallowing or speaking. These therapies coach your muscles and mouth to remember their old ways of moving and functioning.
Respiratory Treatments and Support
Trouble breathing is a common and difficult ALS symptom. Respiratory support is offered at various treatment stages. As the disease progresses, patients often aren’t able to breathe on their own.
At the start of your diagnosis, you’ll be given a pulmonary function test to assess your breathing. A pulmonologist will also address respiratory support. You may need exercises, cough assistance devices, and pressure ventilation as time goes on.
Emotional and Mental Support
With any diagnosis of a terminal disease, patients will need a care plan including emotional and mental support. Terminal illness will take its emotional toll on the patient and their family. With a degenerative disease such as ALS, this is even more difficult to cope with.
Patients with ALS will lose brain and muscle function. It will be difficult to walk, breathe, speak, and eat as the disease progresses. Emotional support for the patient and their family will help them come to terms with the disease. You'll need to take some time to prepare everyone emotionally for the end of life.
Overall wellness and mental health will help improve a patient’s quality of life. The treatment and therapies offered will be more effective when the patient is in a good place mentally and emotionally. They will need both physical and mental strength to face the challenges ahead.
Therapists will also work with patients on how to use devices to help them communicate and speak. As they become unable to speak, this helps give them some way to communicate their needs and interact with loved ones.
The ALS Society of Canada
The ALS Society of Canada works to support and improve the lives of ALS patients and their families. The ALS Society of Canada helps to fund research, trials, treatments, and support. If you or someone you know is suffering from ALS, check out available services and programs on their website.
Research and trials are critical in ending or slowing down the progression of ALS. There is still a lot to learn about the causes and risk factors associated with ALS. This painful disease is often undiagnosed for years as symptoms appear slowly and may be mistaken for something else.
Living with ALS
Living with ALS is difficult for both the patient and their family. This terminal disease will take over parts of the brain needed for muscle control, eating, and breathing. While there is no cure, researchers are working to help prevent and slow the progression of the disease.
It's important to live an active life and eat well to help lower your risk for disease. While there are no known causes of ALS, eating well and making good lifestyle choices are thought to help lower your risks of getting ALS and other diseases.
To learn more about insurance options for yourself or a loved one, fill out the contact form here. Staying on top of your medical care and overall health may help prevent ALS and prevent illness.