As I write this, it is with great trepidation. Colleen hasn’t eaten in five days, and I am terribly reminded about how easily she is set back when she is ill. When I try to give her seizure medication, and she isn’t able to keep it down, I’m paralyzed with the fear that this will be the instance that triggers her seizures again. But, after five days, though she isn’t better, she is still seizure-free. There are moments of happiness in between the cuddles, and I have to take a moment and be thankful that despite her current health situation, she is happy, well and overall, thriving.
There is no doubt this year has been a massive challenge. I started working from home mid-March, and my daughter went fully remote not long after. It felt like I was failing my daughter. I wasn’t able to do my work, get everything done, and still be able to get my daughter’s school work done–I felt terrible. But still, in between all that, teachers and therapists reached out and we were still able to get her some form of therapy. Best of all, she was still happy and healthy.
Lonliness and COVID-19
We’ve essentially lived in a bubble the whole Spring and Summer. I felt utterly alone, but after everything that happened with Colleen when she was born, I wasn’t willing to put her at any sort of risk, in fear that any sickness would trigger her seizures, and she would never get back to the point she was. She was having such an excellent year in school before everything happened. And it was lonely too. Though Colleen is non-verbal, I could tell she missed her friends. And I missed having contact.
It is through all this that I realize we are much stronger together. It’s extremely easy to feel overwhelmed not only with what is going on in the world, but also in dealing with your child’s health. It can be lonely and very isolating at times. But, if you look around and begin to reach out, you will soon find people who are willing to stand with you and be there for you, and help you with your struggles. People who know exactly what you’re going through, and ways to try to help. If you’re home, trying to care and protect your epilepsy warrior, reach out to friends. Join a support group. I’m in quite a few! Reach out to your child’s teacher. It is the most heart-warming thing when I pick up Colleen from school, and see a piece of artwork or a note from one of her friends.
While we wait
We all will look forward to the day we can all head outside, and join others without fear. And though we are apart physically, do know what we are stronger together! But for now, try to take a moment to be thankful every so often if you can.
How important the November month is to my life, as I celebrate the Epilepsy Awareness Month as well as my birthday.
The importance of family
I have a family with two young girls and I am often thinking of the best way to ensure they’re not scared when I have seizures. The 3 year old always runs away calling for mummy, who immediately comes to my rescue. That’s an example of how important a family (meaning just the people we are close to) can be before episodes turn wild, creating even more injuries. Immediately after I had a family, levels of my seizures reduced as they’re always ready to remind me what to do and what not to do so I can stay safe.
You may know there are various types of epilepsy with different anti-epileptic drugs to control them, but I realized we can create our own tactics based on our lifestyles to help manage the condition. For instance, I decided not to feed my brain with any negative stuff however important it was to someone else, as it is automatic stress level raiser. This is because my health is a priority. The moment I refer to it as ‘junk’ or ‘not important’ to my brain, I will have reduced the number of seizures in a day. Some will refer to it as arrogance, but the few who are ready to learn more about Epilepsy will always pat your back & say “all is well”.
Epilepsy in Kenyan Villages
I have voluntarily been mobilizing persons living with epilepsy in my local Kenyan Villages for 3 years. As much as we try informing them on the need to visit hospitals for MRI Scans to determine the nature of their condition, unfortunately members of the community are held up with traditional myths with regards to epilepsy. I personally take the initiative to visit these community members’ households to share with them my story, which is transforming them slowly.
The community has agreed to form a Self Help Group where they meet once a month share their experiences and practice table banking to economically empower them. The group has various goals including the following:
Create a system aimed at recording their medical records for easy accessibility
Create a network of organizations or volunteers for any form of partnerships
Short term goals
The above can only happen through commitment of the members and care givers, since we base our unity on sharing experiences. We have decided to save towards a Mountain Bike that will increase our mobility to every household as it is more secure than other means of transportation. Since they’re in interior villages within the community a bicycle can easily access these areas.
Any form of organization aimed toward sensitizing persons living with epilepsy is vital as it changes the mindset myths on epilepsy and aim towards empowering them to fit in the society and live a normal life. To learn more about how you can support this group contact Rich Tsuma directly on Twitter at @RichardTsuma or via email at firstname.lastname@example.org.
It’s no secret that sleep and seizures are related. Sleep is like an epileptic’s drunk uncle. Most of the time he stays in line, but then there’s that wedding when he goes off the rails with a perfect rendition of the “Footloose” dance while “The Macarena” is playing.
After an obsessive focus on getting “perfect sleep” and a series of accidents that became solid habits, here are a few moves I’ve learned to help me dance with my drunk uncle.
Note: we’ve included a few affiliate links below just in case you want to get your hands on some of the items in the suggestions below
1. Celestial Seasonings SleepyTime Herbal Tea
The first time I tried SleepyTime Tea was because it was winter, I was cold, and my mom suggested it. This tea is so effective that twenty minutes later, my mom couldn’t understand what I was saying. My eyes heavy, speech slurred, I was convinced my mom laced whiskey in the tea. You can check out the ingredients here–it’s all natural baby. (Or at least that’s what I’m letting myself believe.)
Now that we’re all living in sweats with the pandemic, it’s easier than ever for our daytime “outfits” to become our bedtime “outfits.” My pajamas are ONLY worn in bed, which started due to my irrational germaphobia. Pj’s must be clean and have zero contact with anything other than my sheets. Can’t bring those kitchen or living room germs to bed! I’ve even changed out of pajamas, then into pajamas before bed. But the (somewhat) logical side of me realized wearing clothes solely dedicated to sleep psychologically notifies my body that it’s time for some serious shut eye.
Science behind this: Pending (currently conducting my own experiment) Personal experience: 13 years
3. Tucking in my Phone
I’d dropped my old phone so many times that the screen looked like a smashed car window from a country song. The new phone arrived in the mail before the protective case for it. Walking through my apartment, I cradled my phone in my hands like I was carrying a newborn. She couldn’t sleep in my room without her protective gear–what if I knocked her off the nightstand? I put her to sleep in the living room each night for her own safety. Soon I loved this habit of saying sweet dreams to my phone and continued it even after her case arrived. My bedroom is a sleep sanctuary, a place that no pinging notifications can bother or distract me. Sometimes a parent just needs space.
Mind-blowing concept, I know. Ironically, this is the one strategy with actual science to back it up. (Yes, I needed science to start doing this.) When I obsessed about the “right” way to sleep, I was in bed way before my 89-year-old Nana. The late nights when I slipped under the covers at 9:42, my heart raced with anxiety that I’d just set myself up for a seizure the next day. Regardless if I made my curfew or not, I was restless for hours, which only heightened my anxiety, and–shockingly–did not send me into a slumber
It wasn’t until a neuropsychologist, who specializes in sleep management, told me, “Go to bed when you’re tired, not at a bedtime.” Getting that go-ahead from a doc made me feel like a kid who’d just been told she could stay up late to watch “I Love Lucy” reruns. Which is exactly what I did. Then I’d drag myself from the couch, incoherent from fatigue, and wake up the next day feeling horrible.
The doctor had to clarify. “Not when you’re exhausted, but when you’re sleepy.” This distinction between tired and sleepy is hard to navigate, since–like many epileptics–I’m always tired thanks to those darling anti-seizure meds. After about a month of experimenting, I slowly was able to hear my body saying, “Go get in your pajamas, lady.”
With these strategies, you and your drunk uncle will be dancing the “Electric Slide” together in no time.* If you want to chat about these tactics, epilepsy in general, or why miniature plastic animals make the best gifts, please reach out to me on Twitter at @billietopanga.
My seizures started my freshman year of college after I participated in a 24-hour university fundraising event. I came back to my dorm, feel asleep, and woke up in the hospital. Little did I know, I had experienced a generalized tonic clonic seizure that night, which woke up my roommate.
Since that 1st seizure in 2006, my seizures have changed to focal impaired awareness seizures and my seizure frequency has varied over the years. Some years only 5 seizures, other years over 60 seizures. But they all have one thing in common – my seizures happen without warning, which is the scariest part for me. I’ve had them alone in an airport, on public transit, walking by myself to meet friends, while driving leading to an accident, and at work. Once during a seizure at work, I unknowingly hugged a coworker, but luckily it was a friend and he knew about my epilepsy, so it wasn’t awkward.
My journey with epilepsy continues, since my seizures still aren’t controlled. For the past year, I’ve been going through various tests – Neuro Cognitive, Wada Test, etc. – as part of the epilepsy pre-surgical evaluation process. This time last year I was preparing for my second stay in an Epilepsy Monitoring Unit (EMU), but this time for a stereo-EEG (sEEG). A sEEG is a minimally invasive procedure that uses electrodes placed directly in the brain to identify where seizures start. This was the last stage of my pre-surgical evaluation with the goal of learning exactly where my seizures start. It was a long 16-day stay in the EMU, but we learned a lot. We learned that my seizures start in both sides of my brain and that I’m a candidate for an RNS device.
Seizure Free Streak
Using what we learned, I moved ahead with switching my medicines and I recently went 8 months seizure free, which is my longest seizure free streak in over 4 years. I did have a breakthrough seizure this month, but I think about the different treatment options the sEEG taught me I have now, and I feel hopeful. I’m so grateful we did the sEEG, since we learned such valuable information to guide my care. I also say we since my husband was there by my side for the entire stay and I can’t imagine doing that stay without him.