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ALS is a progressive disease with symptoms that vary between individuals based on the type of ALS. Generally, the progression of ALS can be divided into three categories – early stage, middle stage and late stage.

Stages of ALS

ALS is a progressive disease with symptoms that vary between individuals based on the type of ALS and how quickly patients progress through the stages. Not all patients experience the same symptoms and the timeline differs depending on the individual.

Generally, the progression of ALS can be divided into three categories – early stage, middle stage and late stage.

Early Stage

The earliest symptoms that an ALS patient experiences affect muscles. Patients experience:

  • Muscle weakness 
  • Tightness (also known as spasticity)
  • Cramping
  • Twitching.

Additionally, patients undergo muscle loss (also known as muscle atrophy).

In the early stage, symptoms generally only occur in one specific part of the body. However, sometimes, mild symptoms can affect more than one region.

At this stage, symptoms normally affect the arms or hands which can make daily tasks, such as opening a door or brushing teeth, hard to perform. In some cases, symptoms can first appear in the legs. In either case, muscle symptoms cause people to be

  • Fatigued 
  • Experience loss of balance 
  • Issues talking such as slurred words 
  • Poor grip stretch
  • Falling when walking.
At this point, the patient may need help with certain physical tasks and can benefit from using a cane or another device to help walk. Caregivers should help provide assistance when asked, provide emotional support, and help the patient adapt to their new environment in order to stay safe and independent.

Middle Stage

At the middle stage of ALS, the muscle weakness that was previously limited to one region in the early stages starts to spread to other parts of the body. While some muscles lose their functionality, waste away and become paralyzed, other muscles start to become weak and lose their strength. On the other hand, some muscles continue to stay unaffected. Muscle twitching may continue. Additionally, some muscles that are not used often can become permanently shortened, rigid and painful, causing joints such as elbows to no longer fully straighten.

Patients also develop progressive problems with everyday activities such as walking, swallowing and chewing food. In fact, patients at this stage of ALS have a higher risk of choking. Additionally, if a patient falls, they may not be able to stand back up without assistance.

Other difficulties faced by patients at this stage include speaking, breathing (especially when lying down) and pseudobulbar affect (which refers to a condition in which patients experience uncontrollable and inappropriate laughing or crying).

Finally, most ALS patients in the middle stage continue to retain their cognitive ability and thus, are aware of their loss of function. Furthermore, they no longer have the ability to drive.

At this stage, patients may need assistance conducting range-of-motion exercises to keep their joints limber. They may also require a variety of assistive devices such as leg braces, hand and wrist splits, feeding tubes to help eat safely, use of a wheelchair for assistance going places, communication devices, shower chairs, and lift chairs. Patients may also use medication to cope with depression, anxiety and pseudobulbar affect.

Caregivers can help provide physical assistance with everyday activities like eating, drinking, dressing, and mobility. They may also help obtain assistive equipment, observe for signs of depression, help the patient stay involved in the decision-making process and planning, and ensure that range-of-motions exercised are performed every day.

Late Stage

As ALS continues to progress, most of the voluntary muscles (muscles that an individual has control over moving) become paralyzed. At this point, the muscles of the mouth, throat, and lungs are weakened. In fact, the muscles that help move air in and out become severely affected. The poor breathing causes the patient to suffer from fatigue, cognitive issues an, headaches.

At the late stage, the patient’s mobility becomes very limited and they require help for most daily tasks.

At this time, patients are generally only able to eat and drink using a feeding tube and breathe using a ventilator. As breathing becomes an onerous task for the patient, most patients will die of respiratory failure. Other common causes of death can include: 

  • Malnutrition
  • Pulmonary embolism (sudden blockage of a major blood vessel in the lung)
  • Heart arrhythmias (when the heart beats faster or slower than normal)
  • Pneumonia (when food or water gets in the lungs).

Patients will require significant assistance at this time, particularly with the use of power wheelchairs, hospital beds, mechanical lifts and communication devices. While urinary catheters are not necessarily required, they can allow toileting easier. Medications can also help the patient relieve discomfort, anxiety, and fear.

Caregivers at the late stage need to help find ways that the patients can be socially and mentally active. They also need to ensure that patients have 24-hour care operations such as in hospice care, which focuses on providing comfort and quality of life. However, hospice care should be contacted early on to find out the types of in-home services that are available before the final days.

Studies have shown that most patients with ALS anticipate and plan for their deaths and have their wishes respected.

  • Brooks, Benjamin Rix. "Natural history of ALS symptoms, strength, pulmonary function, and disability." Neurology 47.4 Suppl 2 (1996): 71S-82S.
  • Rivera, Itza, et al. "Prevalence and characteristics of pain in early and late stages of ALS." Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 14.5-6 (2013): 369-372.
  • Williams, Mary Tederous, et al. "ALS: Family caregiver needs and quality of life." Amyotrophic lateral sclerosis 9.5 (2008): 279-286.
  • Photo courtesy of SteadyHealth.com

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