For Epilepsy Awareness Month, Equinox Membership Advisor Jude Maydwell shares his personal journey living with epilepsy.
When I was first diagnosed, saying "I have epilepsy" used to make me feel depressed and broken. I felt as though the world didn’t understand me, and that affected my sense of self-worth. Now I look at my disease as an opportunity to look at the world through a different lens and show the world that I can do anything.
I had my first seizure at 21 in my college dorm room, and it may have been the scariest moment of my life. I was laying in my bed, heard a bunch of weird noises, jumped out of my bed and the next thing I know, I am on a gurney on the way to the hospital.
After almost 20 years, 2 brain surgeries, and about 30 different types of medicine, my seizures are somewhat under control, but I am one of the lucky ones. Not all the 3.4 million people diagnosed with active Epilepsy in America are as lucky as me. I have found a way to incorporate fitness, proper sleep, and a positive mindset to not only help me live my day-to-day life, but thrive in it. Now I want to share that to help show others see how fitness can optimize your quality of life with epilepsy.
How MNR Changed My Life with Epilepsy
At the beginning of my Epilepsy journey, I focused a lot on what I couldn’t do. I had to give up my license, I avoided steps and being by myself, and was always scared of what would happen next. Before I came to Equinox, I was in automotive sales. I had been in and out of fitness on my own, but never really fully committed to it. I knew I felt better when I was taking care of myself, but the stress of the job always took precedence, and was making me sicker all the time. When I came to Equinox, I fell in love with being surrounded by fitness and health all the time. The culture got me hooked again, and the ability to incorporate wellness into my daily work life seemed like a no-brainer to keep me healthy. Since getting my fitness, nutrition, and sleep better (i.e. the Equinox pillars of Movement, Nutrition, and Regeneration), I focus more on what I CAN do. For example, I am competing in my first Spartan race at CitiField this year. Old Jude could not have even fathomed doing that, but this version of me is excited to do three more in 2023.
Movement, Nutrition, and Regeneration can play a huge role in helping those of us that have Epilepsy. Optimizing these areas if your life can help with Seizure control, side effects of medication, and overall mental health. People with epilepsy are at higher risk for depression, overeating, cancer, and other comorbidities, so prioritizing wellness is essential. Some key pointers to keep in mind:
1. Discuss Everything With Your Doctor First: They will be able to point you in the right direction on what you can start with, based on medications and current level of health.
2. Use the Buddy System: Having a gym buddy is beneficial for people without Epilepsy, but it is crucial for people with Epilepsy. Make sure it is someone you trust, who knows your triggers and knows your seizure response plan.
3. Keep Identification With You: Have a medical ID bracelet, or set up your Apple Health with your medical information in case anything happens.
4. Less Is More at First: Start slow and small and focus on creating daily habits. It doesn’t have to be complicated. Consult with your Doctor as well as an Equinox Coach to set up some programming.
5. Set Yourself Up For Success: Make sure you are getting enough sleep (Regeneration) and Focusing on your Nutrition (Nutrition). The MNR Approach to Fitness is perfect for those of us who are challenged with Epilepsy
6. Listen To Your Body and Track your Results: Track how you feel after workouts, if you are seeing any seizure activity, and know when to call it quits.
My family at Sports Club New York has been so supportive in helping me through too many seizures this year. I hope this article brings awareness to one of the invisible diseases that plague so many of us. With so many of us who suffer, there is bound to be someone in your Equinox family who has Epilepsy, and know you know what to do to support them.
What to Do If You See Someone Having a Seizure
With 1 in 26 people in our country today diagnosed with Active Epilepsy, chances are you know someone who has had or may have a seizure.
If you see someone who is having a seizure, here are some simple steps you can follow to keep them safe, according to the Epilepsy Foundation of Northeastern New York (https://www.epilepsy.com/local/northeastern-new-york)
1. Always Stay with the Person until the Seizure is over. Seizures can last anywhere from a few seconds to a few minutes and can take on many different forms. You want to make sure the person is safe throughout.
2. Pay attention to how long the seizure lasts. The length of a seizure can tell you if you need to call emergency help. Try to keep track of when it starts and when it ends.
3. Stay calm. Most seizures only last a few minutes, and they can be a disconcerting thing to see. Try to stay calm, because the person suffering from the seizure needs you.
4. Keep onlookers away. From experience, waking up from a seizure to a sea of people can be embarrassing, so try to keep people away if you can.
5. DON’T HOLD THE PERSON DOWN! This is an important one because all the muscles in the body are contracting involuntarily, and you or the person having the seizure can be hurt if you try to hold them down or stop them from convulsing.
6. Don’t put anything in the person’s mouth. Contrary to the old wife’s tales, a person having a seizure cannot swallow their tongue, so there is no reason to put anything in their mouth. They do bite down very hard at times and putting something in there could cause damage to their teeth or jaw.
7. Make sure their breathing is ok. If the person is lying on their back, put them on their side. During some types of seizures, it may look like a person has stopped breathing. This is just due to chest contractions, so there is no need for rescue breathing.
8. Do not give any pills, food, or water, until the person is fully alert. The person may not be aware and could start choking. There are certain types of rescue medicine that can be inhaled up the nose, but do not give this unless directed to by someone who knows the person.
9. Know when to call 911. Only call 911 if
• A seizure lasts more than 5 minutes
• The person is choking
• Multiple Seizures Happen Back-to-Back
• The person does appear to have difficulty breathing above and beyond what was described above.
• The seizure happens in a pool or another body of water
• The person is injured
• You believe this is the person’s first seizure
• The person has asked you to call for help
As someone who has had probably hundreds of seizures in their life, I know it can be mortifying (and expensive) to have help called when you don’t need it. Stay calm, make sure the person is away from anything that can hurt them, and stay with them until it is over.