ALS Progression and Prognosis |
|
|
ALS affects everyone differently. There is no way to predict exactly what your personal experience will be.
It is important to work with your ALS clinic team to address each new challenge as it arises. |
|
How does ALS progress?
ALS progresses differently for everyone. It can start by weakening muscles in an arm or a leg, or by affecting speaking and swallowing. After the initial symptoms, ALS can spread throughout the body, weakening and paralyzing voluntary muscles. Eventually, walking, speaking, eating, and breathing are affected.
ALS does not normally affect vision, hearing, smell, taste, or touch. Nor does it tend to alter bladder, bowel, or sexual functions. Most people with ALS remain sharp and alert, though some do develop frontotemporal dementia, which affects thinking, behavior, and mood.
ALS does not normally affect vision, hearing, smell, taste, or touch. Nor does it tend to alter bladder, bowel, or sexual functions. Most people with ALS remain sharp and alert, though some do develop frontotemporal dementia, which affects thinking, behavior, and mood.
What is the average life expectancy with ALS?
|
This varies greatly from person to person. For some, ALS spreads quickly throughout the body. For others, it can move much more slowly. ALS tends to progress at a steady rate, though it can also seem to accelerate, plateau, or slow at times. In extremely rare cases, ALS has seemed to stop or reverse.
|
|
Average life expectancy for ALS is roughly three to five years. However, at least 10% of people diagnosed with ALS will live ten years or longer. The type of ALS you have can affect your life expectancy.
Can drugs or treatment extend my life?
There are three FDA-approved drugs that may slow progression enough to extend your life by a matter of months.
Studies have shown that attending an ALS clinic regularly can help extend your life by a year or more, in addition to improving your quality of life.
Getting the right respiratory equipment when your breathing is affected can also help you live longer. Some people choose to extend their lives by getting a tracheotomy and going on full-time mechanical ventilation, though this requires 24/7 care.
Getting a feeding tube can help you maintain your weight, have more energy, and get adequate nutrition and hydration.
Studies have shown that attending an ALS clinic regularly can help extend your life by a year or more, in addition to improving your quality of life.
Getting the right respiratory equipment when your breathing is affected can also help you live longer. Some people choose to extend their lives by getting a tracheotomy and going on full-time mechanical ventilation, though this requires 24/7 care.
Getting a feeding tube can help you maintain your weight, have more energy, and get adequate nutrition and hydration.
Is ALS painful?
|
Though symptoms like muscle twitching and cramping can be uncomfortable, ALS itself doesn’t tend to be painful. However, pain can result from the muscle atrophy and immobility caused by ALS. If, for example, your arm and shoulder muscles weaken, your arms may hang down and cause pain in your shoulder joint.
People living with ALS can also feel pain from moving less, lying in one position for prolonged periods, and adjusting to new equipment. Changing positions, wearing braces, stretching, and doing range of motion exercises can help alleviate some pain. |
|
