After the acute phase of encephalitis has passed, many survivors wonder, “Is this as good as it gets?” Their cognition is impaired; their speech is impacted; their balance is off. And their sense of well-being seems illusive. Of course rest, determination and patience are important. However, few resources point patients and their caregivers to the possibilities for, and value of, comprehensive rehabilitation. There are a number of therapeutic options – physical therapy, occupational therapy, speech therapy, cognitive therapy and behavioral therapy. Common belief is that these therapies are most effective when engaged in the months following the acute phase of the illness. However, many are seeing amazing results even years later. The brain is an incredible organ and there are remarkable examples of recovery, even in the “out years.”
Like any rare illness, advocacy plays a critical role in helping patients navigate the healthcare maze. A number of organizations help patients and caregivers move through these challenging circumstances. These organizations also play a vital role in raising awareness, in both the general public and the medical community, alike. Anyone affected by this syndrome is encouraged to take an active role in making encephalitis treatment and rehabilitation a greater priority, thereby increasing funding for research and helping develop better protocols for swift diagnosis and effective treatment.
Several organizations focus on raising awareness. They seek to increase the profile of encephalitis so as to improve treatment, fund research and create a greater sense of community. These organizations include:
Books and publications from authors affected by encephalitis include:
Due to a variety of factors, treatment varies significantly from patient to patient. Those factors include: the type of encephalitis (if an etiology, or cause, is known), the affected area(s) of the brain, other contributing health issues, and even a patient’s motivation to improve. The Encephalitis Society’s website contains many tips to consider along the path to recovery, including social and legal issues.
Brain injury rehabilitation facilities can be a great resource in determining a long-term plan for recovery. These facilities, located in most large cities, typically employ a wide variety of therapists, including physical, occupational, speech, cognitive and behavioral. Other tools to consider come in different formats, including:
Register here to receive more information in the coming months regarding new treatment protocols or other updates to the IEC site.