Progression

As ALS progresses, people living with the disease will find it more difficult to walk and move around, and they will eventually require support to do so. For others with bulbar-onset ALS, speech and swallowing difficulties may be more prominent in earlier stages. Their symptoms will gradually worsen and take away their ability to move, swallow, speak, and eventually, breathe.

For some people living with ALS, symptoms may seem to stay the same over a period of time. However, ALS is a progressive disease and does not go into remission.

30 to 50% of people living with ALS will experience cognitive and/or behavioural difficulties, meaning their thinking and personality may change. People living with ALS may display inattention, difficulty in speech, facial or reading comprehension, verbal communication difficulties, obsessive or unusual behaviour, or apathy/depressive behaviour.

It is important to recognize that some of these symptoms may not be related to biological disease. It is not advised to associate symptoms with a diagnosis of cognitive impairment without the support of a qualified clinician. There are specialized tests to help detect cognitive changes associated with ALS/FTD.

ALS Canada is working to provide better information and understanding on the ALS & FTD spectrum to better support this community. In the meantime, for more information, please check the resources:

Early intervention has been shown to prolong survival time and improve quality of life. ALS specialists recommend discussing options before symptom progression is too advanced.

Some types of exercise and physical therapy might be recommended for people living with ALS, to help with symptom progression. These may include:

• Flexibility training: stretching and exercises to increase range of motion
• Strengthening: low to moderate resistance exercises, such as those done with a resistance band (e.g., Thera-Band)
• Aerobic: moderate exercise for large muscle groups, such as stationary cycling, swimming, or walking
• Balance training with a physiotherapist

ALS Canada’s ALS Guide further addresses physical therapy and recommended exercises.

In Ontario, ALS Canada offers an Assistive Equipment Program to help people living with ALS continue living safely and comfortably in their homes.

For more detail the  program and how to access it, please refer to the ALS Canada Equipment Program Overview & Information

If you live outside of Ontario and would like to learn more about access to equipment, please contact your provincial ALS Society.

It is advised that people living with ALS discuss breathing support options with members of their ALS healthcare team, as well as caregivers at home to decide what might be right for them. This decision should be made well before breathing function has seriously declined. The decision should also be communicated with their ALS physician and personal healthcare directive so that the care they desire is received if a respiratory crisis occurs.

ALS Canada’s ALS Guide further addresses breathing and ventilation support.

People living with ALS might consider voice banking and assistive devices to facilitate communication as their symptoms progress. Individuals affected by dysarthria (difficulty speaking) should be regularly followed by a speech language pathologist to assess timely interventions and support.

ALS Canada’s ALS Guide further addresses speech, communication and assistive devices for people living with ALS and their families.

As ALS progresses, people living with ALS may encounter progressive difficulty in eating and feeding themselves. They might also be affected by nutrition deficiencies and weight loss, which can affect their digestive system. Some people living with ALS might also experience constipation.

Consultations and regular follow-up with a dietitian or ALS specialist can help to accommodate dietary changes and address these issues.

To address digestive support in ALS, feeding tubes are devices that can support nutritional needs. This intervention is recommended on an individual basis, usually when a person is experiencing significant difficulties with swallowing, decreased respiratory function with increased risk of aspiration, and/or if they have lost more than 10% of their initial body weight. The decision to have a feeding tube always belongs to the individual, and it should be discussed with their primary care team.

ALS Canada’s ALS Guide further addresses nutrition support and feeding tube information.

While pain is not commonly reported by people living with ALS, some people experience physical pain, joint discomfort, or cramping. Movement exercises and keeping warm can help alleviate the feelings of pain. Medication prescribed by your ALS physician may also be needed in some cases.