A big Epsy welcome to Michael Lang, a 52 year old epilepsy advocate from just outside New York City. He has drug resistant epilepsy with focal seizures, read more about his story below.
Hi everyone, I’m Michael, a 52 year old man from just outside NYC. I’m a husband and father to an 11 year old boy. To get to know me a little; some of my hobbies include playing guitar, reading, and spending time outdoors with my son. Recently I've taken an interest in puzzles, which are a great way to reduce sensory overload. My son is a great supporter of my epilepsy needs. Post seizure he does anything he can to help – from covering me with a blanket to making sure I stay hydrated.
My epilepsy journey started over 20 years ago in my early 30s. Primarily these days I have focal aware seizures and despite brain surgery, VNS implant, and many medication combinations, my epilepsy is still uncontrolled.
My Epilepsy Advocacy
I do a lot of activities within the epilepsy community these days. Most are geared towards supporting patients, treatments, or advancing the cause for finding a cure. At the same time, I must respect the unpredictable nature of my own health. A few years ago I started a small support group for epilepsy patients and their caregivers in my area. From my own experiences, I know that people with epilepsy benefit from connecting with other patients and caregivers. It’s a way for me to give back, and also learn from others. I'm also a member of a few other NYC support groups.
Staying educated about epilepsy is very important to me. I’ve traveled to epilepsy meetings, including a visit to Capitol Hill to raise awareness and funding for the condition.
Through my work, I’ve learned a few surprising things regarding epilepsy. For example, the impact and support that is lacking for family members of those who have passed away due to epilepsy (SUDEP). People just don’t know enough about the topic. Also, access to a knowledgeable epileptologist/neurologist can sometimes be difficult to find depending on where you live. You need a doctor who has experience with all forms of epilepsy. My advice to those who are challenged with finding a good doctor is to know your seizure type, timing, frequency, and triggers the best you can. Also, if you’re really struggling with the condition don’t be afraid to speak up.
Michael’s Proudest Advocacy Moment
For me, it’s meeting another patient for the first time, and already having something in common with them. You can meet anyone, from anywhere, but one of your first chats is always “What medication/dosage are you on? Is it working?”. For some, epilepsy can be a cycle of fear, failed medications, and false hope. Sometimes you don’t know what’s happening or will happen with your treatment plan. Meeting others with the same condition really helps.
Michael & Epsy
I am using the recently released epilepsy app for Android. Mainly, I use Epsy to monitor my medication compliance and seizure activity which has been really helpful. Recently, I’ve been able to discover triggers, using the App I’m finding out more and more every day! The other benefit of using Epsy is that my precursors to seizures are becoming more apparent, such as the time of day and sleep.
Men & Epilepsy
I think it can sometimes be tough for a man to admit he needs help. When I had to make career adjustments and give up driving for years, it was difficult. You learn over time that most people (family/friends/neighbors) are great and want to help in any way they can. So, check in with friends, connect with other patients, and you will find common ground. Don’t be afraid to ask for help when you need it!
Michael's message to those with Epilepsy
Keep the faith. Tomorrow is another day, and don’t take today for granted. You’ll find a way to best manage your condition. Apps like Epsy are a great starting point. Help can be only a click or phone call away. Look into all avenues, whether it’s a friend, doctor, online support group; whatever works for you. Epilepsy is misunderstood, not much is known about the condition by wider society. I find raising awareness and funding really satisfying by doing my little part.
Find Michael on LinkedIn here or find out more about his Fanwood epilepsy support group here.