What Does Incomplete Locked-In Syndrome Mean?
Locked-in syndrome comes in three recognized forms: classical, complete, and incomplete.
Incomplete locked-in syndrome sits between the other two forms of the condition. A person with this diagnosis has lost the vast majority of their voluntary movement, but unlike classical locked-in syndrome, where eye movement and blinking are usually all that remain, incomplete locked-in syndrome allows for a bit more: perhaps a faint head turn, a twitch in one finger, or a partial facial movement. It’s also distinct from total immobility/complete locked-in syndrome, where no voluntary movement remains at all, not even in the eyes.
The person’s awareness is not in question. Someone with incomplete locked-in syndrome is conscious, alert, and processing the world around them, even if their body offers only glimpses of that inner life.
No two cases look identical. One person might retain a small amount of movement in their jaw or lips; another might be able to shift their head slightly. These differences shape how a family learns to read their loved one and how care teams approach communication, but the through-line across every case is the same: the mind is present, even when the body cannot show it easily.
What Leads to Incomplete Locked-In Syndrome?
A stroke affecting the brainstem is the leading cause of locked-in syndrome. The brainstem serves as the relay point between the brain and the rest of the body’s muscles; when a stroke interrupts blood flow there, it can sever the connections needed for movement while leaving thought and perception untouched.
Several other conditions can also bring about incomplete locked-in syndrome, among them:
- Central pontine myelinolysis, a condition that can develop when low sodium levels in the blood are corrected too fast
- Brainstem infections
- Exposure to certain toxins
- Overdose
Whatever the underlying cause, the pattern that defines incomplete locked-in syndrome stays consistent: the body’s ability to move is largely gone, but the person’s inner awareness carries on much as before. Many families find that pinning down the cause, however difficult that process is, helps them make sense of what their loved one is going through and start thinking ahead to what ongoing care might involve.
Day-to-Day Care Needs for Incomplete Locked-In Syndrome
Even with some retained movement, most people with incomplete locked-in syndrome depend on others for nearly every part of daily life, for the long term. The presence of a small amount of movement can open doors for communication, but it rarely lightens the overall load of physical care a family or care team must provide. Common elements of that care include:
- Nutritional support: Swallowing safely is usually not possible, so a feeding tube inserted through the abdominal wall (a PEG tube) is often needed to deliver nutrition.
- Respiratory support: Depending on how the condition has affected breathing muscles, a person may need a ventilator or a tracheostomy.
- Skin protection and repositioning: Limited mobility puts a person at risk for pressure sores, so caregivers need to shift their position on a regular schedule and check the skin closely.
- Rehabilitative therapy: Physical and occupational therapists can help preserve joint flexibility, guard against contractures, and, in some cases, strengthen whatever voluntary movement remains.
- Ongoing medical monitoring: Frequent checks help catch complications early, including lung infections, skin breakdown, and other risks tied to prolonged immobility.
- Communication development: Speech-language specialists and caregivers often work together to turn a person’s retained movement into a workable way to answer questions and express needs.
The financial toll of this kind of care is significant, and it compounds the emotional and physical strain a family is already carrying.
| Type of Care | Estimated Cost in the United States |
| Private duty nurse (hourly rate) | $4,680/year (based on one hour per week) |
| Assisted living community | $74,400/year |
| Long-term care facility, e.g., nursing home (semi-private room) | $114,975/year |
| Long-term care facility, e.g., nursing home (private room) | $129,575/year |
Source: Genworth
Can Someone Recover from Incomplete Locked-In Syndrome?
Some degree of recovery is possible with incomplete locked-in syndrome, though the path looks different for each person. Because some movement is already present at diagnosis, families sometimes notice gradual gains over months or years: a head turn that becomes steadier or a finger movement that grows more deliberate. These gains, even when they seem minor from the outside, can meaningfully expand how a person communicates and interacts with the people around them. A full return to prior function is rare, but progress of any size deserves to be recognized.
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Building Communication with Incomplete Locked-In Syndrome
Because a person with incomplete locked-in syndrome retains some voluntary control beyond their eyes, families often have more than one avenue for building a communication system, sometimes several working in tandem.
Starting with What Movement Remains
The most practical starting point is usually whatever movement the person can produce most reliably, whether that’s blinking or moving a finger, a hand, the jaw, or the neck. Working alongside a speech-language pathologist or occupational therapist, families can turn that movement into a basic signal, one tap or shift for “yes,” stillness or a different motion for “no.” Because fatigue, illness, or time of day can affect how reliable that movement is, the system usually needs periodic adjustment rather than a one-time setup.
Using Blinks as a Backup or Complement
Even when other movement is present, blinking often remains a dependable signal. A simple code, such as a single blink for “no” and a double blink for “yes,” gives families a fallback that works even on days when other movements are harder to produce.
Working with a Letterboard
A letterboard lets a caregiver point to letters one at a time while the person signals, through a blink, a head movement, or whatever cue is most reliable, when the pointer reaches the letter they want. Families can speed this up over time by adding frequently needed words, like “cold,” “thirsty,” “itchy,” “tired,” or “pain,” directly onto the board.
Eye-Gaze and Switch Technology
Eye-gaze systems track where a person is looking, letting them select letters or phrases on a screen without any other movement required. For someone with incomplete locked-in syndrome who has steadier control somewhere else in the body, a switch device wired to that movement, a finger press, for instance, can serve much the same purpose. Both options tend to offer more speed and independence than blink-only systems, and they can typically be adjusted as a person’s abilities shift over time.
What Can I Do If My Loved One Was Diagnosed With LIS?
Most people are left wondering if they have any options in this situation. Most people aren’t looking to punish a medical provider for their loved one’s diagnosis; instead, they simply want justice and/or the compensation necessary to fund their loved one’s care.
Our team works with independent medical providers all across the nation to help families understand whether the care their loved one received met or violated standards.
If we find that the medical provider’s treatment fell below the industry’s standard of care, you may want to hold them liable. In doing so, you could recover compensation for:
- Medical costs already incurred and expected in the future, from hospital care and therapy to long-term nursing support and equipment like eye-gaze or switch devices
- The cost of long-term care, given how extensive ongoing support tends to be for someone with this diagnosis
- Income the person has lost, and income a family member may have given up to become a caregiver
- Pain and suffering tied to the condition itself
- The emotional weight carried by a loved one who is aware of what’s happening to them
- The loss of the relationship and companionship a family once had
- The broader toll the diagnosis has taken on a loved one’s quality of life
Because every situation is different, what a family may be able to recover depends on the particular facts of what happened and how those events affected their loved one and household. We will work with you to determine what appropriate compensation might look like.
Support Is Available After an Incomplete Locked-In Syndrome Diagnosis
If you’re trying to piece together what happened to your loved one and what your family’s options look like, you don’t have to figure it out on your own. A locked-in syndrome attorney at Newsome Law is ready to listen and help you think through the next steps.
Call today for a free consultation. You pay nothing upfront for our help.
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