Autoimmune encephalitis (AE) is a rare condition where the body’s immune system attacks healthy brain cells and causes inflammation. Living with autoimmune encephalitis can be challenging.
Those affected will experience various neurological issues, from confusion and memory loss to seizures and paranoia. However, patients can manage symptoms and live happily with the appropriate treatment and support.
Below, we will provide ten tips to help you lead a fulfilling life with autoimmune encephalitis.
Tip 1: Educate Yourself About the Disease
Education is essential when managing a rare condition like autoimmune encephalitis. Only 13 out of 100,000 people suffer from AE. If you are one of these people, the more you know about your condition, the better you can handle it.
Those living with autoimmune encephalitis must understand the different causes, symptoms, and types of the disease. While AE is an autoimmune condition, it can be triggered by various factors, such as certain cancers, infections, and tumors.
Symptoms of this disease have a neurological nature and may present differently based on the type of AE. The most common types of AE are:
- Limbic encephalitis
- Hashimoto’s encephalitis
- Anti-NMDA receptor encephalitis
You can refer to this article “a comprehensive guide to autoimmune encephalitis” to learn more about the disease. Your physicians and healthcare providers can also guide you in the right direction and introduce reliable resources to help you better understand your condition.
Tip 2: Establish a Support System
Living with autoimmune encephalitis can be an isolating experience. Having a support system can make a world of difference. Family and friends who understand your condition can help you cope with the daily challenges of your disease by:
- Encouraging you during difficult times
- Offering emotional support and reassurance
- Alleviating feelings of loneliness and anxiety
- Providing practical assistance and helping with daily tasks
To communicate effectively with your support system about your condition, you must:
- Establish boundaries
- Provide specific ways they can help
- Be open and honest about your limitations
- Educate them about AE and how it affects you
- Encourage them to ask questions and express concerns
Join a Support Group
Your friends and family do not have to be your only source of support. There are many other people living with autoimmune encephalitis. You can find them through support groups and online forums to learn more about their coping strategies and offer mutual support.
Tip 3: Prioritize Self-Care
Prioritizing self-care is crucial when battling an autoimmune condition like AE. It can help you better manage your symptoms and improve your quality of life. You must attend to your sleep, nutrition, and physical and mental health.
Consider the following tips:
- Stay hydrated by drinking plenty of water throughout the day
- Eat a balanced diet rich in fruits, vegetables, whole grains, and lean proteins
- Engage in light to moderate physical activity, such as walking 3-5 days a week
- Plan meals to ensure you are consuming all the essential nutrients while living with autoimmune encephalitis
- Identify triggers of stress and develop coping strategies to address them
- Incorporate relaxation techniques such as mindfulness, deep breathing exercises, and meditation into your day
- Aim for 7-9 hours of quality sleep each night and establish a bedtime routine to achieve it
Tip 4: Find the Right Treatment Plan
Working closely with healthcare providers, including neurologists, immunologists, and other specialists, allows you to find the best treatment option for managing your disease. They can help develop a personalized treatment plan tailored to your needs.
Be honest about your concerns and be open to different treatments. Your best option may be tumor removal surgery, or you may benefit more from receiving IVIG therapy for autoimmune encephalitis.
While undergoing treatment and living with autoimmune encephalitis, you must also manage your medications and their side effects:
- Track your medications by making a detailed list of their schedules and dosages
- Set reminders to take your meds on time
- Inform your doctors if you experience any unusual side effects with your medications
Tip 5: Manage Cognitive Symptoms
Cognitive impairment is a hallmark of autoimmune encephalitis. Patients are often prone to experiencing memory problems, mood swings, agitation, and even depression.
You must learn how to manage your cognitive symptoms to make living with autoimmune encephalitis easier. Here are some tips you can use:
- Seek cognitive therapy or counseling if needed
- Use visual cues and labels to help with organization
- Practice cognitive exercises and brain training activities
- Break down tasks into smaller, more manageable steps
- Minimize distractions in your environment to maintain focus
- Create a structured daily schedule to plan and prioritize tasks
- Use memory aids like calendars, to-do lists, and reminder apps
- Have consistency in your daily activities to support concentration
Tip 6: Stay Active and Engage in Hobbies
Despite physical limitations, you must find ways to remain active. By staying active and engaging in hobbies, those living with autoimmune encephalitis can enhance their physical and emotional well-being. You can stay active by:
- Incorporating stretching or mobility exercises to reduce stiffness
- Modifying activities based on personal abilities and energy levels
- Engaging in low-impact exercises such as yoga, walking, or swimming
- Consulting healthcare professionals for guidance on safe and suitable exercise routines
Do not forget to find hobbies that bring you joy and fulfillment. These hobbies can include:
- Gardening or spending time in nature
- Learning new skills to keep the mind stimulated
- Participating in music therapy or playing a musical instrument
- Exploring creative outlets such as painting, crafting, or writing
Tip 7: Track Changes in Symptoms
Living with autoimmune encephalitis can be unpredictable. Your symptoms may fluctuate and change over time. It is crucial to keep track of these changes to identify triggers, optimize symptom management, and take control of your health.
Here are some tips you can use to monitor your symptoms effectively:
- Keep a detailed symptom diary
- Record the severity of each symptom and write down any changes in your condition
- Identify warning signs like increased fatigue or mood changes that may indicate a flare-up
- Find any potential triggers like stress or lack of sleep that worsen your symptoms
You can later share this symptom diary with your healthcare providers to give them a clearer picture of your condition.
Tip 8: Stay Positive and Resilient
Staying positive and resilient is crucial for individuals living with autoimmune encephalitis. A positive attitude can not only improve your mental well-being. According to studies, it can also positively impact your physical health.
However, it is not always easy to stay positive, especially when you are living with an autoimmune disease like AE. To foster a positive mindset, you must:
- Try to find joy in everyday activities
- Focus on the things you can control
- Stay engaged in activities that bring you joy and fulfillment
- Set realistic goals for yourself and celebrate small victories
- Prioritize self-compassion and give yourself grace during difficult times
- Remember that it is okay to have bad days and to ask for help when you need it
Tip 9: Modify Your Lifestyle and Work
You may need to make a few adjustments to your lifestyle and work schedule while living with autoimmune encephalitis. Here are some tips to help you make these modifications:
- Consider flexible work options if possible
- Use assistive technology tools to aid in cognitive tasks
- Try telecommuting, part-time hours, or job-sharing to manage fatigue and cognitive challenges
- Communicate with your employer about your condition and work together to find accommodations that support your needs, such as:
- Longer deadlines
- Reduced workload
- Breaks during the day
By prioritizing your health over work, you can reduce stress and manage your condition better to live a fulfilling life.
Tip 10: Stay Informed and Advocate for Yourself
While you may have the support of your friends, family, and healthcare providers, you must be your own biggest advocate when living with autoimmune encephalitis.
Here is how you can do that:
- Research available treatments to make informed decisions about your care
- Communicate openly with healthcare providers about your symptoms, concerns, and treatment preferences
- Advocate for yourself in seeking appropriate accommodations at work or in school
- Educate others about autoimmune encephalitis and the challenges you face
- Raise awareness about the disease within your community, social circles, and support networks
- Share your experiences and challenges with friends, family, and colleagues
- Stay current on research, advancements, and new treatments to explore all potential options for managing symptoms and improving outcomes
- Consult healthcare providers to discuss new treatment options and potential clinical trials that may benefit your condition
Manage Autoimmune Encephalitis With AmeriPharma™ Specialty Pharmacy
Autoimmune encephalitis can be manageable with the correct approach. If you or a loved one are living with autoimmune encephalitis, you can use the tips above to lead a happier life.
AmeriPharma™ Specialty Pharmacy can help you in that quest. Our ACHC-accredited specialty pharmacy provides at-home IVIG therapy for those with rare and complex conditions like AE.
We serve patients in more than 40 US states and territories. Our trained and caring infusion nurses can come to you to administer treatments and help you manage your condition in the comfort of your home.
Contact us now to talk to a specialist and receive specialty care at home with full-service coordination, 24/7/365 support, and copay assistance.
