Stages of ALS
The effects of ALS on the body are mostly related to the voluntary muscles, everything
from arm and leg control to speaking and breathing. However, intellect and the senses
are not diminished (see What is ALS?).
ALS (or Lou Gehrig's disease) stages can be divided into three broad categories:
early, middle and late stages. Even in these broad categories, a person may not
fit each profile.
No two cases are exactly alike; ALS doesn't follow a predictable pattern. The progress
from one stage to the next is unique for each individual. A patient may move quickly
through the stages or progress slowly, reaching plateaus before moving to the next
stage.
If you have questions or concerns about your progress through ALS, discuss them
with your health care provider.
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Early Stages
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Patient Experience
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Muscles
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Symptoms may be limited to a single region of the body. Mild symptoms may affect
more than one region. Muscles characterized by:
- Weak and soft or stiff, tight and spastic
- Cramping and twitching
- Atrophy (loss of muscle mass)
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Physical Effects
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May experience minor symptoms such as:
- Fatigue
- Poor balance
- Slurred words
- Weak grip
- Tripping when walking
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Assistance Needed
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May need help with some physical tasks, and might benefit from the use of a cane,
leg brace or other simple device.
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Caregiver Role
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As a caregiver of someone with ALS, your role through the stages of the disease
will change as well. In the early stages of ALS, be prepared to provide assistance
when asked.
Emotional support for you will be important as well. You may want to begin sharing
news of the diagnosis with children, relatives and friends. Include them in your
circle of emotional support. Many
local support groups are also available to aid you as a caregiver.
Be proactive. Look for ways to adapt your home to allow your loved one to continue
his or her independence as much as possible. Keep safety in mind.
Examine your insurance policy and become familiar with your benefits. Take time
to review and update your legal, financial, and medical affairs as well.
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Middle Stages
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Patient Experience
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Muscles
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Symptoms become more widespread. Some muscles are paralyzed, while others are weakened
or unaffected. Twitching may continue.
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Physical Effects
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Unused muscles may cause contractures – joints become rigid, painful and may be
deformed. As a result of weak muscles, a person with ALS may:
- Require help to stand
- Have difficulty eating and swallowing – causing choking
- Find it hard to breathe, especially when lying down
Some people with ALS experience bouts of uncontrolled and inappropriate laughing
or crying (called pseudobulbar affect or PBA).
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Assistance Needed
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Range-of-motion exercises, especially for the shoulders, help keep joints limber.
Adaptive equipment may become necessary, such as:
- Braces and splints - To keep limbs stretched and in a good position
- Feeding tubes – To avoid choking problems and keep weight stable
- Noninvasive ventilation (BiPAP) – To make up for weak breathing,
especially at night
Anti-depressants and anti-anxiety medication may help bolster coping skills. Several
drugs help with uncontrolled laughing or crying (PBA).
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Caregiver Role
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The job of caring for your loved one will become more difficult during the middle
stages of ALS. Remember to ask for help; don’t try to do it all.
Your loved one will likely need assistance with physical tasks, such as:
- Eating
- Drinking
- Bathing
- Toileting
- Dressing
- Communicating
- Mobility
Help your loved one keep his or her joints limber by performing range-of-motion
exercises each day. Watch for signs of diminished abilities, such as standing, walking
and swallowing. Make changes in your home environment to ensure safety.
Help obtain needed assistive equipment (wheelchair, shower chair, transfer boards).
As much as possible, help your loved one stay involved in the affairs of daily living,
including decision-making and planning.
Learn how to operate equipment and perform care tasks from nurses, therapists and
others on the health care team.
Watch for signs of depression and discuss them with your health care provider. Be
aware of your own depression and/or anxiety. Discuss it with your doctor and work
out coping strategies. Keep on top of your physical health.
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Late Stages
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Patient Experience
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Muscles
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Most voluntary muscles are paralyzed. The ability to move air in and out of the
lungs is severely compromised.
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Physical Effects
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Most people in the late stages of ALS have severely limited mobility and are unable
to care for their own needs.
Poor respiration may cause:
- Fatigue
- Fuzzy thinking
- Headaches
- Susceptibility to pneumonia
Speech may no longer be possible.
Eating and drinking by mouth aren’t possible.
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Assistance Needed
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Power wheelchair, hospital bed, mechanical lift, switches that enable any moving
body part to operate computers, environmental control units and communication devices.
Assisted ventilation, either noninvasive or invasive (tracheostomy).
Feeding tube.
Urinary catheters aren’t required but can make toileting easier.
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Caregiver Role
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Find and train caregiving help.
Oversee 24-hour care of your loved one.
Find ways to help your loved one stay socially and mentally active.
Get into a routine that supports you as well as your loved one.
Although this stage is all-consuming for caregivers, surprisingly many report great
stability and satisfaction in their daily lives at this later stage of the disease.
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