Because it causes near-global paralysis, takes away the ability to speak, and prevents a person from providing self-care, locked-in syndrome affects almost every aspect of a person’s life. Most people never regain meaningful movement or speech after a locked-in diagnosis. However, many patients report a relatively high quality of life despite living with the condition.
People with Locked-In Syndrome Require Around-the-Clock Assistance
People with locked-in syndrome need help with almost everything. Many even require help breathing, although many also regain the ability to breathe on their own. He or she needs a feeding tube or someone to feed them and assistance with toileting and hygienic tasks. Some need skilled nursing care, but many can live at home with the help of family and home care workers.
Electric wheelchairs, lifts, specialized hospital beds, and wheelchair accessible vans are key parts of ensuring people with locked-in syndrome remain active and involved with their family and friends.
The Ability to Communicate Is Central to Improving Quality of Life
Those with complete locked-in syndrome who cannot easily communicate using eye gaze devices or blink codes cannot interact with their friends and family as readily as those with a classic or incomplete locked-in diagnosis. When a patient has an easy method of communication, even when it requires a special device, he or she can participate in conversations and play a more active role in their community in general.
In the 1960s through 1990s, blinking and eye movements were the primary methods of communication for those with locked-in syndrome. Over the last 20 years, eye gaze devices advanced, offering a way for people to communicate on their own and even use the Internet and send emails. Brain/computer interfaces may even make it possible for those with complete locked-in syndrome to communicate in the near future.
People with Locked-In Syndrome Often Report a Positive Quality of Life
While locked-in syndrome is an example of an extremely limiting impairment, that does not mean those with this diagnosis cannot live a fulfilling life. Today more than ever, technology allows those with limited movement and physical abilities to engage with others both in-person and online.
When asked to report their quality of life, people with locked-in syndrome report having meaningful lives. In general, their quality of life is better than that of people with serious chronic or terminal conditions. Ensuring he or she plays an active role in family decisions and activities, enrolling in appropriate social services, and helping them get out of the house when possible can all help improve quality of life.
Most People Diagnosed with Locked-In Syndrome Do Not Recover
In general, once someone gets a locked-in syndrome diagnosis, he or she may regain the ability to breathe or swallow, but most never recover significant movement. In rare instances, some people regain the ability to talk or walk, but there is no known cure or treatment. Instead, treatment for locked-in syndrome centers on reducing the risk of pressure sores, pneumonia, and other secondary infections and improving quality of life.
Treatment generally addresses health concerns as they arise. Doctors and therapists ensure patients have the right rehabilitative therapies and devices he or she needs and provide family members with training as caregivers. In this way, medical care providers can help to give patients with locked-in syndrome the best possible quality of life despite their impairments and little hope for full recovery.
Talk to a Locked-In Syndrome Attorney About the Possibility of Pursuing a Payout
If a member of your family has a locked-in syndrome diagnosis, we can review your case for free. Let the brain injury attorneys from Newsome | Melton explain your rights and determine if you can take legal action on behalf of your loved one. You may be able to pursue compensation if your family member’s locked-in diagnosis came after:
- A vehicle accident or another personal injury.
- A medical mistake, a medical malpractice incident.
- A violent act.
- A delayed diagnosis.
In one of these cases, you may be able to file an insurance claim or civil lawsuit to go after the compensation needed to cover:
- Medical care costs.
- Ongoing care costs.
- Rehabilitation and therapy.
- Expenses related to prescribed medications, mobility devices, and communication devices.
- Pain and suffering.
- Mental anguish.