HOW TO HEAL

Overview

As previously mentioned, some adults and children with autoimmune encephalitis (AE) will recover quickly within months of being diagnosed and starting treatment. For other people, recovery may take years. Many research studies show that patients continue to improve 18 months to 2 years after starting treatment. Some people with AE will recover fully, others will have mild ongoing problems, and some will be left with marked, ongoing, life-changing problems.

Recovery involves both physical and mental rehabilitation. Rehabilitation may start in the hospital, but often requires ongoing therapy over months to years. Goals of rehabilitation start with regaining the ability to perform daily activities, such as eating, bathing, dressing, and basic communication. Then, the focus of rehabilitation will change to a slow re-entry into social activities, work and school. Many children need to return to school with accommodations, such as partial day schedules, reduced work load, and often at lower academic level than prior to illness. Adults may need to return to modified work schedules or tasks. Efforts should focus on maintaining a regular schedule, monitoring for school or work avoidance, and increasing social activities.

What outcomes
can be expected?

While the recovery process is unique to each patient, early and aggressive treatment for autoimmune encephalitis leads to the best recovery. The various antibodies causing the autoimmune response can result in varying symptoms and respond widely in terms of recovery.

A study in Lancet Neurology by Dr.Titulaer, Dr. Dalmau and colleagues found that 50 percent of patients with Anti-NMDA-receptor encephalitis, show improvement within four weeks of receiving treatment. According to the same study, 80% of patients with Anti-NMDA-receptor encephalitis eventually have partial or complete recovery. Some patients took up to 18 months to recover. This study was done in 2013 and focused solely on outcomes in terms of neurologic disability.

A recent study by Dr. Anusha Yeshokumar assessed the long-term impact of anti-NMDA receptor encephalitis on psychosocial outcomes, or emotional and social well-being. 91.8% of participants reported persistent symptoms (mean duration of 4.4 years since symptom onset), these included: fatigue (73.8%), memory problems (72.1%), attention and concentration problems (59.0%), emotional or impulse control issues (55.7%), sleep problems (47.5%), headaches (45.9%), and seizures (13.1%). They also found that a return to work or school after the illness was negatively impacted by an initial misdiagnosis, and positively impacted by follow-up with a psychiatrist after hospitalization. They concluded that individuals with anti-NMDARE often have poor psychosocial outcomes despite literature reporting good outcomes in terms of neurologic disability.

These findings highlight the importance of improving current methods of determining outcomes, including patient perspectives in assessing outcomes. It also supports the incorporation of assessments that specifically evaluate these psychosocial outcomes.

Outcomes after AE from AE Alliance on Vimeo.

LL Gibson et al., Cognitive impact of neuronal antibodies: encephalitis and beyond. Translational Psychiatry, 2020 https://www.nature.com/articles/s41398-020-00989-x

RA Blum et al., Assessment of long-term psychosocial outcomes in anti-NMDA receptor encephalitis, Epilepsy & Behavior, 2020 https://pubmed.ncbi.nlm.nih.gov/32375094/

MJ Titulaer et al., Treatment and prognostic factors for long-term outcome in patients with anti-NMDA receptor encephalitis: an observational cohort study, The Lancet Neurology, 2013
https://www.ncbi.nlm.nih.gov/pubmed/23290630

Rehabilitation care
in different settings

It’s important to define the difference between inpatient and outpatient rehabilitation therapy. Inpatient rehabilitation refers to treatment or therapy you receive in a hospital prior to being discharged, to ensure a patient can safely return home. Outpatient rehabilitation therapy refers to treatment received when not admitted to a hospital. Outpatient therapy centers offer a blend of services from physical therapists, occupational therapists, speech pathologists and psychologists. There are no specific rehabilitation programs for AE. Following the recommendations for concussion or traumatic brain injury may provide a framework for the types of therapies and strategies that may be helpful for AE.

Meet the team

In an ideal rehabilitation setting, a ‘multidisciplinary’ team of professionals will work closely with the patient. Initially, each therapist will carry out detailed assessments to explore the extent of the difficulties caused by the AE, including physical, cognitive, emotional, behavioral and social difficulties. Following the assessment process, the team will develop a rehabilitation program which includes the rehabilitation goals, both short and long-term. The different disciplines that may be involved in the rehabilitation process, and their areas of expertise, are outlined below:

OTs help people to gain independence in carrying out daily tasks such as dressing, washing, cooking and leisure activities. An OT will also help the person to develop the skills that underlie these activities, such as budgeting and planning, and help to find ways around any remaining problems. At a later stage, the OT may help and advice on difficulties that may be encountered in the home environment and advise on any adaptations that may need to be made. They will also be involved in planning for returning to work.

A PT helps people to regain the use of their muscles and joints after AE and helps with balance and movement problems. A PT will, for example, suggest exercises to help the person improve their physical ability and enable them to become as mobile and independent as possible.

A SLP is a highly-trained professional who treats people who have difficulty with speech or language. Although people often think of speech and language as the same thing, the terms actually have very different meanings. If you have trouble with speech, you struggle with the “how-to” of talking—the coordination of the muscles and movements necessary to produce speech. If you have trouble with language, you struggle with understanding what you hear or see. A SLP also treats people that have difficulty swallowing.

Neuropsychologists specialize in understanding the brain and how changes to it may affect our emotions, our behavior and our ability to think (cognition). A neuropsychologist is trained to assess and treat people who experience difficulties with memory, concentration, planning, language, reasoning, and other aspects of learning and understanding. Fatigue is another factor which can affect someone’s psychology and ability to process information.

Psychiatrists play a pivotal role in the diagnosis and treatment of AE. As psychiatric symptoms often dominate the symptoms that occur at onset of the disease, patients may present initially to a psychiatrist who are tasked with identifying abnormal features of psychosis presentations, including alterations in mental status, seizures, and dysautonomia, which may prompt consideration of AE and consultation with a neurologist. Furthermore, for patients with suspected AE undergoing immunotherapy, psychiatric symptoms are frequently ongoing and may require symptomatic pharmacologic and non-pharmacologic treatments.

Other disciplines that
could be involved in
your recovery process

An endocrinologist can diagnose and treat hormone problems and the complications that arise from them. Hormones regulate metabolism, respiration, growth, reproduction, sensory perception, and movement.

Nurse Case Managers are registered nurses who coordinate all aspects of the care of individual patients. They ensure proper utilization of services and resources as well. Case managers provide assistance within, between, and outside of facilities. Many of them work closely with social workers, obtaining services for people who need long term care or home care after hospitalization.

Naturopathic medicine is a system that uses natural remedies to help the body heal itself. It embraces many therapies, including herbs, massage, acupuncture, exercise, and nutritional counseling.

‘When faced with a major health crisis, one of the most important things you can do is to find a doctor who you trust, who will listen, and who will think ‘outside the box’. Because the cause of Auto-immune Encephalitis , in many cases, is unknown, it is vital that you choose a healthcare provider who has at their disposal a wide range of diagnostic modalities and treatment options.

Allopathic/Western medicine’s approach is to treat the illness only, primarily focusing on the symptoms and utilizing drugs and surgery. This is warranted in so many medical cases. On the other hand, holistic healthcare follows Hippocrates’ dictum, ‘first do no harm’. A holistic practitioner’s approach is to look at the human body as integrated and whole. They take into effect how the body reacts with its’ environment, and its’ response to food, pollution, stress, medicine and climate to name a few. Most importantly, a holistic doctor sees the healing force as being WITHIN the body and the physician’s role is to assist the body back to its’ state of healthy homeostasis.

I am a Chiropractor (non- force), Acupuncturist (laser and needle) and Applied Kinesiologist. I also utilize homeopathy, therapeutic nutrition and mind-body balancing. I have treated AE patients and I find that each one is unique and individual and requires different treatments because each body responds differently. Initially, I want to know if there is toxicity and what level of inflammation exists. There are four main systems in the body: structural, chemical, emotional, and nervous system. What are the stressors on these systems? Within this protocol and analysis, usually lies the cause/condition of the disease. It can be an arduous task to find the right doctor who fits your needs, but it is well worth the work. Don’t be afraid to walk away if you are not getting results.

Good luck on your journey and search. At our clinic, we help people Live Well, Stay Well and Live an Extraordinary Life. That is what you so richly deserve too’. – Dr. Joe W. Lindley

The goal of vestibular rehabilitation is to retrain the brain to better process and organize information from the inner ear, helping understand its “new normal” after a dysfunction of the system occurs. This process involves repetitive stimulation of the inner ear via movement to help the brain utilize the remaining information from the inner ear more effectively. Your brain will also utilize information from your other two sensory systems (vision and muscle/joint information) to promote overall improvements in balance and dizziness to help you return to your normal activities.

A vision therapist develops an individualized treatment program designed to correct visual-motor and/or perceptual-cognitive deficiencies. Vision Therapy sessions include procedures designed to enhance the brain’s ability to control of for instance: eye alignment, eye focusing abilities, and visual processing.

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Cape Moments

Mike’s AE Journey

It was September 4th, 2018, 18 days before I was getting married. I received a phone call from one of my mom’s co-workers. Apparently, my mom didn’t come in to work that day and didn’t call in sick either. They got my number from her emergency contacts. They told me that she had been a little forgetful at work the past few months, but didn’t want to concern me because my wedding was coming up. I quickly phoned my mom. She was just hanging out at home! I asked, “Why didn’t you go into work today?”. She responded, “I don’t know.”

Mike’s AE Journey

We would like to know your Journey.