The holiday season is upon us, bringing with it a whirlwind of emotions that can be both joyous and challenging. For those living with epilepsy, as well as their loved ones and caregivers, the festive season may evoke a range of feelings, from happiness and love to loneliness and anxiety. In the midst of celebrations, it’s crucial to prioritize self-care and manage potential triggers to ensure a safe and enjoyable holiday experience. This blog post offers some thoughtful insights on navigating the holiday season with epilepsy, emphasizing the importance of well-being and meaningful connections.

1. Prioritize Self-Care: The hustle and bustle of the holidays can be overwhelming, leading to exhaustion and stress. For individuals with epilepsy, lack of sleep and increased stress can exacerbate seizures. Prioritize self-care by getting enough rest and managing stress levels. Remember, taking care of yourself is the first step towards a fulfilling holiday season.
   
   
2. Identify and Manage Triggers: Understanding your seizure triggers is essential during this time. If you’re sensitive to flashing lights or excessive stimuli, be cautious around elaborate Christmas displays. Consider shopping in smaller stores to avoid overwhelming environments. Pacing yourself and being mindful of triggers can contribute to a more comfortable and seizure-free holiday experience.
   
   
3. Embrace the True Spirit of the Holidays: Shift the focus from material goods to the essence of the holiday spirit. Share your time and love with others, emphasizing meaningful connections over extravagant gifts. Reflect on the joy of giving and receiving, fostering a sense of gratitude that transcends material possessions.
   
   
4. Address Mixed Emotions: Mixed emotions are a common part of the holiday season. Take the time to acknowledge and address these feelings. Connect with a trusted friend or counselor to discuss your emotions and create a plan for managing them. Reflect on cherished memories and find ways to celebrate the positive aspects of the season.
   
   
5. Maintain Special Diets: If you follow a special diet for epilepsy, ensure that your dietary needs are met during holiday gatherings. Communicate your requirements to those hosting the event, or consider bringing your own food. Prioritizing your health and well-being includes staying consistent with your dietary regimen.
   
   
6. Stay Committed to Medication: Maintain your regular medication schedule, and bring extra medication if you’re traveling. Having a supply of rescue medicine or a VNS magnet is advisable, especially in case of unexpected changes in travel plans. Share your Seizure Response Plan with trusted companions, ensuring they are aware of necessary precautions.
   
   
7. Be Prepared for Emergencies: Carry essential information with you, including the name and contact details of your healthcare team. Having a plan in place and sharing it with those traveling with you will empower you to manage seizures or clusters effectively, should they occur during the holiday season.
   
   
8. Stay Flexible with Plans: While it’s essential not to let seizures hinder your plans, maintaining flexibility is equally important. Be open to adjusting plans if needed and consider alternative ways to connect with friends and family, such as online gatherings. Prioritize your well-being while adapting to the circumstances.
   
   

As the holiday season unfolds, let’s embrace a spirit of compassion, understanding, and self-care. By taking proactive steps to manage epilepsy and prioritizing well-being, individuals and their loved ones can create meaningful and joyful holiday memories.

Epilepsy Durham Region is wishing everyone a safe, happy, and fulfilling holiday season.

Every year on October 18th, the global epilepsy community comes together to observe International SUDEP Action Day. This day serves as a reminder of the importance of understanding and addressing Sudden Unexpected Death in Epilepsy (SUDEP). For individuals living with epilepsy and their loved ones, SUDEP can be a source of great concern. In this blog post, we will delve into understanding SUDEP, its prevalence, ways to reduce the risk, and offer support for families and caregivers who may be living in fear.

For a personal story – please take a read here to learn more about how a family has been impacted by SUDEP: Fighting Epilepsy in Memory of Micayla

Understanding SUDEP

SUDEP is a tragic and devastating event where an otherwise healthy individual with epilepsy dies suddenly and without explanation. This occurs usually during or after a seizure, and no other cause of death can be identified through autopsy. While rare, SUDEP is a stark reality for some within the epilepsy community.

Statistics and Prevalence of SUDEP

Though rare, SUDEP is a significant concern. It’s estimated that SUDEP occurs in about 1 in every 1,000 people with epilepsy each year (Harden et. al., 2017). While SUDEP can affect individuals of all ages, it’s more commonly reported in younger individuals, particularly those aged 20-40. The risk of experiencing SUDEP is closely tied to the frequency and control of seizures. Individuals with frequent and uncontrolled seizures face a higher risk, while those with infrequent seizures or well-managed epilepsy have a lower likelihood of experiencing SUDEP.

The presence of additional medical conditions alongside epilepsy can potentially increase the risk of SUDEP. Conditions such as cardiovascular issues or respiratory disorders may contribute to a higher risk profile. These statistics highlight the importance of understanding SUDEP and taking proactive measures to mitigate its risk.

Reducing the Risk of SUDEP

While we cannot eliminate the risk entirely, there are steps that individuals with epilepsy can take to reduce the likelihood of SUDEP:

1. Medication Adherence: Consistently taking prescribed medications is crucial in managing seizures.
2. Regular Medical Check-ups: Regular visits to a healthcare provider can help in monitoring seizure activity and making necessary adjustments to treatment plans.
3. Seizure Diaries and Monitoring Devices: Keeping track of seizures can provide valuable insights for healthcare providers. Additionally, specialized monitoring devices can alert caregivers in the event of a seizure.
4. Lifestyle Adjustments: Adequate sleep, stress management, and avoiding triggers can contribute to better seizure control.

Support for Families and Caregivers

Living with the fear of SUDEP can be incredibly challenging for families and caregivers. It’s important to seek support and resources to navigate this emotional journey:

1. Professional Counselling and Therapy: Mental health professionals can offer coping strategies and emotional support.
2. Support Groups: Connecting with others who are experiencing similar concerns can provide a sense of community and understanding. If you’d like to take part in our support groups, please email clientservices@epilepsydurham.com to join.
3. Education and Awareness: Learning more about SUDEP and epilepsy can empower families and caregivers to better support their loved ones.

Resources and Support Organizations

For additional information and support, consider exploring the following resources:

• Epilepsy Foundation
• SUDEP Action
• CURE Epilepsy

Understanding SUDEP is a critical step in providing the best care and support for individuals living with epilepsy and their families. By being informed, proactive, and seeking the right resources, we can work towards reducing the risk of SUDEP and offering a stronger support network for those who need it most.

References:

• Hesdorffer, D. C., & Tomson, T. (2011). Sudden unexpected death in epilepsy: potential role of antiepileptic drugs. CNS drugs, 25(5), 421-432.
• Harden, C., Tomson, T., Gloss, D., Buchhalter, J., Cross, J. H., Donner, E., … & French, J. A. (2017). Practice guideline summary: Sudden unexpected death in epilepsy incidence rates and risk factors: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology and the American Epilepsy Society. Neurology, 88(17), 1674-1680.

Meet Ryan

Ryan has been a dedicated volunteer of Epilepsy Durham Region’s for over a year, and he is committed to helping other individuals like himself to live well with epilepsy and know that they are not alone.

Through his volunteer work, Ryan helped to establish the Durham College Epilepsy Association, where he sits as the student facilitator. He aims to raise public awareness about epilepsy, and ensure that students feel that their school is a safe and inclusive environment for people with epilepsy.

This year, Ryan will be joining Epilepsy Durham Region for the Walk for Epilepsy in partnership with the Durham Community Foundation. Please help to show you support for Ryan below.

“I just want everyone to feel like they belong, and to know that they can do great things. THIS is a space where people with epilepsy can feel that, the way I have.” – Ryan

Join us in supporting Epilepsy Advocate, Ryan, as he walks 5km for people with Epilepsy

The beginning of a new school year can be an exciting yet challenging time for both parents and students, especially when epilepsy is part of the equation. As parents and caregivers, ensuring a safe and supportive environment for students with epilepsy requires careful planning and open communication with educators and school staff. Here are 10 valuable tips for parents and students to navigate the back-to-school transition smoothly and make the upcoming academic year a successful one.

1. Open Communication is Key: When the school year starts, establish open lines of communication with teachers, school nurses, and administrative staff.
   • Inform them about your child’s epilepsy diagnosis, triggers, and any specific needs they might have.
   • Discuss seizure types, signs, and appropriate responses to ensure everyone is well-prepared.
   • Offer resources and training materials about epilepsy to teachers and staff. This can help them better understand the condition and how to respond effectively.
   • Inform the school immediately of any changes in your child’s health or medication regimen.
     
     
2. Create an Epilepsy Action Plan: By creating a well-documented epilepsy action plan, you empower school personnel to respond effectively in case of a seizure and provide your child with a safe and supportive learning environment. This plan is a critical tool in ensuring your child’s health and well-being at school.
   • Begin by working closely with your child’s healthcare provider, such as a neurologist or epileptologist, to create a personalized epilepsy action plan.
   • Describe your child’s specific seizure types, triggers, including any distinctive characteristics and how long they typically last.
   • List all current medications, including names, dosages, and administration schedules. Ensure this information is kept up-to-date.
   • Share emergency contact information, including your contact details, your child’s doctor’s information, and any other relevant contacts.
   • Provide step-by-step instructions on how to respond if your child experiences a seizure. This should include:
     • What to do if a seizure occurs during class or elsewhere on the school premises.
     • Whether or not to administer rescue medications, and if so, detailed instructions on how to do so.
     • When to call 911 or seek immediate medical assistance.
     • How to provide comfort and support during the postictal phase (the period after a seizure).
   • Ask your child’s school administration about a Plan of Care document under the Ontario government’s PPM 161 memorandum
     
     
3. Develop a Seizure Response Team: Identify key individuals who will be responsible for responding to seizures at school. This may include teachers, school nurses, and even fellow students who are aware of your child’s condition and how to offer assistance when needed. Encourage the school to designate a point of contact or liaison for matters related to your child’s epilepsy. This person can help coordinate efforts and ensure that all staff members are aware of your child’s condition.
   
   
4. Educate Teachers and Peers: Arrange an informative session with your child’s classmates and teachers about epilepsy. Demystifying the condition can reduce stigma and foster a more inclusive environment. Use this opportunity to clarify any misconceptions and answer questions.
   
   The training should cover various aspects, including understanding different types of seizures, knowing when to administer rescue medications (if applicable), and providing comfort and support during and after a seizure. Depending on the age and maturity of students, consider involving peers in the response team. Educate these students about epilepsy and how to offer support and understanding to their classmate during and after a seizure. Learn more about Epilepsy Durham Region’s comprehensive classroom and school staff presentations.
   
   
5. Promote Self-Advocacy: Teach your child about their epilepsy and how to advocate for themselves. Encourage them to communicate their needs to teachers and peers, while also knowing when and how to ask for help if they experience any symptoms or difficulties.
   
   Promoting self-advocacy empowers students with epilepsy to take an active role in managing their condition and communicating their needs effectively. Here’s a more detailed explanation of why this is important and how to encourage it:
   
   • Foster open communication between the student and their teachers. Encourage them to discuss their epilepsy, triggers, and any necessary accommodations.
   • Teach them how to express their needs and preferences in a respectful and assertive manner. This includes asking for extra time on assignments, requesting seating away from potential triggers, or explaining their medication schedule.
   • Ensure that the student knows the steps outlined in their epilepsy action plan. Teach them how to communicate these steps to teachers, school nurses, or peers in case of a seizure.
   • Stress the importance of seeking help promptly when needed.
     
     
6. Medication Management: If your child takes epilepsy medications, work with the school staff to ensure they’re administered correctly and on time. Provide clear instructions and any necessary medication, along with emergency contact information.
   
   
7. Prepare for Special Circumstances: Discuss strategies with the school for managing situations such as field trips, physical education classes, and extracurricular activities. Make sure your child’s needs are accommodated during these times as well.
   
   
8. Seizure-Proofing the Environment: Collaborate with the school to create a safe classroom environment. Discuss potential seizure triggers and ensure that any hazardous objects or obstacles are removed. If your child is photosensitive, consider addressing classroom lighting.
   
   
9. Encourage Emotional Support: The emotional well-being of a student with epilepsy is crucial. Offer them a safe space to express their feelings and concerns. Consider connecting them with support groups or counselling services if needed.
   • Provide educational resources about epilepsy for the student and their classmates. A better understanding of epilepsy can lead to more empathy and support from peers.
   • Emotional support is a critical component of a successful transition back to school for students with epilepsy. It helps them manage the psychological and social aspects of living with epilepsy.
     
     
10. Regular Check-ins: Throughout the school year, stay in touch with teachers and school staff to monitor your child’s progress and address any emerging issues. Regular communication ensures that everyone remains informed and can make necessary adjustments if required.
    • Plan and schedule regular meetings between the student, parents or guardians, teachers, and school staff. These meetings can be held monthly, quarterly, or as needed based on the student’s specific situation.
    • Collaborate with teachers to identify areas where additional support or accommodations may be needed.
    • Collaborate with the student to set academic and personal goals for the upcoming months. Encourage them to outline steps they can take to achieve these goals.
    • Keep detailed records of each check-in, including the topics discussed, decisions made, and action items. This documentation helps track progress and ensures accountability.
      

Navigating back to school with epilepsy requires collaboration, planning, and open communication between parents, students, and school staff. By following these tips and fostering a supportive environment, parents can help their children thrive academically and emotionally while managing their epilepsy. Remember, a well-prepared and educated community can make a significant difference in ensuring the success and well-being of students with epilepsy.

Epilepsy, a neurological disease characterized by recurring seizures, not only impacts the individual diagnosed but also has far-reaching effects on their entire family. From emotional challenges to lifestyle adjustments and financial burdens, the ripple effect of epilepsy extends beyond the person experiencing seizures. In this blog post, we delve into the profound impact epilepsy has on families, shedding light on the often overlooked aspects of this condition.

1. Emotional Roller Coaster:
   Epilepsy introduces an emotional roller coaster ride for both the person diagnosed and their family members. Seizures can strike at any time, leading to a range of emotions such as fear, worry, and anxiety. Witnessing a loved one experiencing a seizure can be a distressing and traumatic experience, leaving family members feeling helpless and concerned for their well-being. Managing these emotions and providing ongoing support becomes an integral part of their lives.

2. Constant Vigilance:
   Living with epilepsy requires constant vigilance, and family members often find themselves on high alert. The unpredictability of seizures means that loved ones must always be prepared to provide immediate assistance and ensure a safe environment. This heightened state of alertness can be mentally and emotionally draining, as they are always anticipating and adapting to the needs of their family member with epilepsy.

3. Lifestyle Adjustments:
   Epilepsy necessitates adjustments in everyday life for the entire family. Triggers that may provoke seizures, such as forgetting to take medication, stress, lack of sleep, flashing lights or certain foods, need to be avoided. Routines may need to be modified to accommodate medical appointments, medication schedules, and potential recovery periods. Additionally, creating a safe and supportive environment becomes paramount, which may involve making changes to the home or considering additional safety precautions. These adjustments require patience, understanding, and flexibility from everyone involved.

4. Financial Burden:
   The financial implications of epilepsy can be significant for families. Medical expenses, including travel to doctor visits and anti seizure medications, can quickly accumulate. Furthermore, specialized treatments, therapies, and assistive devices may be necessary, all of which can strain a family’s financial resources. Additionally, epilepsy may affect the ability of the person diagnosed to work, leading to a loss of income. Balancing the financial burden while ensuring the best possible care for their loved one with epilepsy becomes a juggling act that families must navigate.

5. Mental Health Impact:
   Epilepsy has a profound impact on the mental well-being of both the person diagnosed and their family members. Coping with the challenges of epilepsy, such as the fear of seizures, the stress of constant vigilance, and the uncertainty of the condition, can lead to increased levels of stress, anxiety, and depression. Family members may experience feelings of guilt or helplessness, and their own mental health can be compromised as they strive to provide unwavering support. It is essential to prioritize mental well-being and seek professional help when needed, fostering open communication within the family and creating a support network to navigate these challenges together.

Epilepsy is a disorder that reaches far beyond the individual affected, affecting the entire family unit. Understanding the profound impact epilepsy has on families is crucial in fostering empathy, support, and a more inclusive society. By acknowledging the emotional roller coaster, constant vigilance, lifestyle adjustments, financial burden, and mental health challenges faced by families, we can extend a helping hand and create a community that uplifts and supports each other.

If you or someone you know is living with epilepsy or supporting a loved one with epilepsy, remember that you are not alone. Reach out to us at Epilepsy Durham Region, we have a caregiver support group that may be of interest. There are also other epilepsy support groups, healthcare professionals, and online communities to connect with for guidance and resources. Together, we can raise awareness, advocate for affordable healthcare, and provide the understanding and support that families affected by epilepsy truly deserve.

Each year, Canadians recognize May as Mental Health Awareness Month. It is a time to educate ourselves about mental illnesses and the many impacts they can have on a person’s life. Epilepsy itself is not a mental illness, however studies show that individuals living with epilepsy have an increased incidence rate of many mental health illnesses including depression and anxiety.

• It is estimated that the prevalence of depression in association with epilepsy is as high as 55% ¹
• Studies suggest 33% of people with epilepsy recall having encountered enacted stigma/bullying while 90% admit to experiencing felt stigma ²
• Prevalence of suicide ideation among people with epilepsy ranges from 2.5 to more than 7 times that of the general population, with a rate of completed suicide of more than 30 times the global estimated rate ³
• Up to 25% of people with epilepsy live with a generalized anxiety disorder ¹

It can be difficult to understand whether mental health impacts on individuals with epilepsy are based on how epilepsy affects their life, or more directly how their brain is affected by seizures. While it can be hard not to focus on the ‘why’, we encourage individuals facing mental health challenges to focus on steps to help manage their symptoms. Here are some strategies that may be helpful for people with epilepsy facing mental illness and mental health challenges:

Reach out to your local Community Epilepsy Agency: Many local agencies offer programs and services directly related to mental health challenges and epilepsy including Cognitive Behavioural Therapy based programs and counselling. If your local agency is not currently providing the appropriate programming, they may be able to direct you to another epilepsy agency that is, or other mental health resources in your community. (Click here to find your local agency in Canada)

Never underestimate the power of a support group or peer-to-peer support: Living with epilepsy can be incredibly isolating; support groups offer a safe environment to share challenges, fears, triumphs and more.

Journal about more than just your seizure activity: It is important to track seizure frequency for many reasons, but it is also incredibly important to pay close attention to your day to day mood, behaviours, and quality of life. Share details about your mental health with both your general practitioner, as well as the specialist managing your epilepsy.

Know that you are not alone: Please connect with Epilepsy Durham Region if you have any additional questions.

Please note, if you are concerned about your mental health, please consult your doctor as soon as possible. If you or someone you love is in crisis, please connect with your local crisis centre (Durham Region: Durham Mental Health Services – Crisis Response | 1-800-742-1890).

1. Jackson, M J., and D Turkington. “DEPRESSION AND ANXIETY IN EPILEPSY.” Journal of Neurology, Neurosurgery & Psychiatry, 2005, https://doi.org/10.1136/jnnp.2004.060467.
2. “Epilepsy: A Public Health Imperative.” WHO International, 13 Jun. 2019, www.who.int/publications/i/item/epilepsy-a-public-health-imperative.
3. “The Black Dog in Your Waiting Room: Screening for Depression in People with Epilepsy.” EPIGRAPH, vol. 21, no. 4, 2019, https://www.ilae.org/journals/epigraph/epigraph-vol-21-issue-4-fall-2019/the-black-dog-in-your-waiting-room-screening-for-depression-in-people-with-epilepsy

At Epilepsy Durham Region, we value the feedback of all the individuals and families that connect with our organization for supports and services. We would like to hear how you think we are doing. Please complete the short survey below to help us learn how we can continue to improve.

As we wrap up national Volunteer Appreciation month, Epilepsy Durham Region has taken some time to reflect on what our volunteers mean to our effectiveness, the support we are able to provide, and ultimately the overall success of our organization. As a small staffed non-profit, Epilepsy Durham Region knows that we would not be where we are without the dedication, passion, and kindness of our volunteers. Simply put, volunteers are the backbone of Epilepsy Durham Region, helping it to thrive, have its heart shine through and its mission delivered, and we would like to take some time to highlight the commitment of a local family that personifies the goodwill, motivation, and philanthropy of volunteerism – the Douglas family.

Epilepsy Durham Region could not be more grateful for our connection to the Douglas family – Cris, Robyn, Ryan, Matt, and Kyle. Their generosity is equally matched by their upbeat energy, and innovation. No matter the initiative, event, or ask, members of the Douglas family are first in line to offer advice, skill sets, time, and a hand. They have played a pivotal role in Epilepsy Durham Region launching new, successful events, and offer a sounding board as we look to strengthen our organizational goals and direction. Most recently, their kindness has been felt in a huge way as we have adapted to recover from the pandemic and our transition away from our office space; with every turn they offer their support, space when we need it, and even the boxes to house our belongings.

The Douglas family motivation, drive, and commitment to community is unparalleled and the impact of their generosity is seen in the success of our programs, and the faces of the families with epilepsy that we help. Here is the amazing part – their volunteerism doesn’t stop with Epilepsy Durham Region. You can find a member of the Douglas family attached to so many amazing causes throughout Durham Region. Whether they are chairing a Board of Directors or committee, or riding their bikes for entire days at a time to raise much needed funds, they are always looking for new ways to be helpful.

It is hard for Epilepsy Durham Region to find words to portray how grateful we are to know the Douglases, but it is safe to say that we consider them family and feel forever indebted to the altruism that the Douglas family exemplifies.