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ALS is a rare, progressive neurological disease. This article outlines the complications that arise over time in patients with ALS, including breathing problems, eating problems, dementia, speech problems, and many others.

Amyotrophic lateral sclerosis (ALS) is a rare neurological disease which develops due to a loss of motor neurons, which are nerve cells that are responsible for controlling voluntary muscle movement.

ALS is a progressive disease, which means that it worsens as time goes on. Generally, the disease progresses over a time period of 3 to 5 years.

As there is no cure for ALS, complications, such as breathing problems, eating problems, dementia, speech problems, pressure sores, pseudobulbar affect, primary bulbar palsy, progressive muscle atrophy and primary lateral sclerosis, often develop over time.

These are the following complications that can arise in patients with ALS:

1. Respiratory (breathing) problems

The muscles involved in breathing eventually become paralyzed due to motor neuron loss. ALS patients very common encounter breathing problems and respiratory failure is the leading cause of death for ALS patients.

For treatment of respiratory complications, patients can often use breathing strategies. However, patients may eventually require breathing devices, such as a bi-level positive airway pressure (BiPAP) or continuous positive airway pressure (CPAP) to help them breathe during the night.

Furthermore, due to the significant breathing problems late-stage patients encounter, many people opt to have a tracheostomy (also known as a tracheotomy), which makes use of a machine known as a respirator that automatically inflates and deflates patient’s lungs.

2. Eating problems

Similar to respiratory problems, patients with ALS often experience eating problems because their motor neurons lose the ability to control muscles that are responsible for swallowing. This can lead to a number of problems including:

  • Pneumonia: as patients develop problems swallowing, they have a higher chance of developing pneumonia because food, saliva, and liquids (and the bacteria they carry along) can go down the wrong pipe and get into the lungs.
  • Malnutrition: as swallowing is affected and patients can no longer swallow properly, that causes many patients to eat less nutritious food, leading to malnutrition, dehydration, and often anorexia.  

In order to address these eating problems, many patients chose to use a feeding tube to reduce these risks.

Furthermore, supplementation with vitamins and other nutrients can help address malnutrition.

3. Dementia

ALS patients are known to have a higher risk of developing dementia and dementia-related conditions. These are the types of dementia ALS patients may develop:

  • Frontotemporal dementia: a progressive brain disease that is associated with changes in behavior, personality, and language dysfunction due to loss of nerve cells.

  • Alzheimer’s disease: the most common type of dementia, Alzheimer’s disease is a chronic neurological disease that is largely associated with short-term memory loss.

There are medicines that can help slow down disease progression of dementia, but there is no cure.

4. Speech problems

Similar to other complications, speech problems develop as a result of motor neurons loss that controls muscles which are responsible for speech. Most patients with ALS will start to suffer from mild problems such as slurring of words. However, this will worsen over time.

In the beginning, many patients will work with a speech therapist to make their speech easier to understand.

As the patient’s speech becomes more difficult to understand and comprehend, the patient will likely need communication technologies and assistive devices to be better understood. For example, there are computers and mobile phone applications that allow patients to type and the program will read it out loud. These applications will also have certain phrases to be selected so they don’t have to type everything out.

Additionally, many advanced programs can communicate with the patient using brain-computer interfaces, which allows communication without typing or having to speak. These programs allow the patient to control the computer through their brain waves. Hence, these programs are good for patients that suffer from paralysis.

5. Pressure sores

Studies have shown that patients with ALS are at a higher risk of developing pressure sores, which are ulcers in the skin and underlying tissue that develop due to prolonged pressure of sitting or lying. The risk is particularly high for women and younger patients.

6. Pseudobulbar affect

Many patients with ALS will develop a complication known as the pseudobulbar affect which is characterized by sudden, uncontrolled laughter or crying. This can occur multiple times throughout the day and often does not match the severity of the situation.

7. Primary bulbar palsy

Some patients with ALS will develop primary bulbar palsy that is primarily caused by loss of nerve cells that control bulbar muscles (which are involved in controlling speech, swallowing and chewing).

The first muscles affected are those that control speech and swallowing, which causes problems in swallowing and breathing early on in the disease. Patients may also feel weakness of the facial muscles and tongue.

Patients with primary bulbar palsy have worse outcome compared to other types of ALS patients.  

8. Progressive muscle atrophy

Patients with ALS develop progressive muscle atrophy, which is characterized by muscle weakness and wasting. This complication does not affect speech and swallowing. Patients also do not experience spasticity. Patients with progressive muscle atrophy tend to have a slower disease course compared to others.

9. Primary lateral sclerosis

Patient with ALS can develop primary lateral sclerosis, which is characterized largely by spasticity with no muscle atrophy. Patients with primary lateral sclerosis have a better outcome.

  • Shoesmith, Christen L., et al. "Prognosis of amyotrophic lateral sclerosis with respiratory onset." Journal of Neurology, Neurosurgery & Psychiatry 78.6 (2007): 629-631.
  • Hillel, Allen D., and Robert Miller. "Bulbar amyotrophic lateral sclerosis: patterns of progression and clinical management." Head & neck 11.1 (1989): 51-59.
  • Lomen-Hoerth, Catherine, Thomas Anderson, and Bruce Miller. "The overlap of amyotrophic lateral sclerosis and frontotemporal dementia." Neurology 59.7 (2002): 1077-1079.
  • Raney, Janna Porter. "A comparison of the prevalence of pressure sores in hospitalized ALS and MS patients." Advances in Skin & Wound Care 2.2 (1989): 48-49.
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