May is ALS Awareness Month

As a national partner with The ALS Association, BAYADA Home Health Care is committed to helping increase public awareness about amyotrophic lateral sclerosis (ALS) and offering resources and support for those affected by the disease.

What is amyotrophic lateral sclerosis (ALS)

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. As the disease progresses, it leads to the paralysis of all voluntary muscles causing those affected to possibly lose the ability to speak, eat, move and breathe.

The progression rate of ALS can vary significantly, although the average survival time with ALS is 3 to five years, some people live 10 years or even longer.

According to The ALS Association:

• Only 5-10% of all cases have a known family history of the disease. This is often called familial ALS.
• The life expectancy of someone diagnosed with ALS is about 2-5 years
• An estimated 5,000+ people are diagnosed with ALS each year
• Military veterans are twice as likely as the general population to develop ALS

Symptoms of ALS

This disease typically involves a gradual onset with initial symptoms varying greatly between individuals. Not all people with ALS experience the same symptoms or the same sequences or patterns of progression. However, progressive muscle weakness and paralysis are universally experienced.

The ALS Association lists the most likely initial ALS symptoms as the following? 

• Progressively worsening loss of muscle control
• A gradual onset of progressive muscle weakness
• Tripping, dropping things, muscle cramps and twitches
• Abnormal fatigue of the arms and/or legs
• Slurred and/or slowing speech
• Uncontrollable periods of laughing or crying

When the breathing muscles become affected, people with the disease will ultimately need permanent ventilatory support to assist with breathing.

How is ALS Diagnosed?

While scientists have made incredible strides in understanding this disease, identifying biological indicators that can help diagnose and treat the disease, and learning ways to prevent cases of ALS through years of research, this is still a difficult disease to diagnose. There is no one test or procedure that will specifically diagnose ALS. Instead, it’s a process of thorough clinical examination and extensive testing to rule out the possibility of other diseases, that a diagnosis can be finally be established.

In order to make a definitive diagnosis of ALS, your doctor may order a combination of diagnostic tests including the following procedures:

• Electrodiagnostic tests, including electomyography (EMG) and nerve conduction velocity (NCV)
• Blood and urine studies, including high resolution serum protein electrophoresis, thyroid and parathyroid hormone levels and 24-hour urine collection for heavy metals
• Spinal tap
• X-rays, including magnetic resonance imaging (MRI)
• Myelogram of cervical spine
• Muscle and/or nerve biopsy
• A thorough neurological examination

After receiving an initial diagnosis of ALS, the ALS Association recommends that a person diagnosed with ALS seek a second opinion from an ALS expert – someone who diagnoses and treats many ALS patients and has training in this medical specialty. 

Managing ALS at home

One of the greatest challenges of living with ALS is managing the disease as it progresses. People with ALS will need support to maintain comfort and dignity as muscle paralysis increases and they lose the functional ability required for even the simplest daily activities.

In-home support for people with ALS can include:

• Assistive care for individuals who have limited mobility, need help preparing meals and eating, or require assistance with everyday tasks like bathing, dressing, and grooming
• Nursing care to manage respiratory and feeding issues, administer medications, and manage pain and symptoms
• Therapeutic assessments and recommendations for adaptive equipment and technologies

Finding support for living with ALS

According to the American Academy of Neurology’s Practice Parameter Update studies have shown that participation in a multidisciplinary ALS clinic may prolong survival and improve quality of life. Find a local ALS Association Certified Support Center near you.

People living with ALS may experience a better quality of life by participating in a local ALS support group and attending one of The ALS Association’s Certified Treatment Centers of Excellence or a Recognized Treatment Center. Such Centers provide a national standard of best-practice multidisciplinary care to help manage the symptoms of the disease and help people living with ALS live on their own terms for as long as possible.

Learn more and spread awareness

• Visit bayada.com/ALS and learn more about how BAYADA helped a client with ALS live life to the fullest
• Check out The ALS Association's website to learn more about this disease 
• View stories of hope and share yours at alsa.org
• Learn how you can become an ALS advocate to influence public policy, and work to improve the lives of people living with ALS and their caregivers.
• Subscribe here to receive important and timely information from the ALS Association