![]() When my doctor retired, it took time to find the right fit with a healthcare team and to find a new healthcare provider who had experience with narcolepsy.Īfter feeling like I was not being heard, I learned I had to communicate and advocate for my needs with no fear of judgment. Almost immediately after noticing narcolepsy symptoms, I asked for a referral to a specialist. Stay true to yourself, seek out the right assistance, live each day to the fullest extent possible, know you aren’t alone, and never give up!Īs a person living with narcolepsy, what does it mean to be your own advocate? For me, it began even before I got my narcolepsy diagnosis. Never blame yourself for consequences beyond your ability to control. Support from family and friends is so important to successfully managing this disorder.īelieve in Yourself: No matter how difficult life can be when living with narcolepsy, do your best to remain in a positive state of mind. It’s difficult to overcome every challenge alone. Support from Family & Friends: It is essential to educate family and friends with as much information as possible concerning the effects of narcolepsy. Narcolepsy isn’t simply mind over matter. It is my belief that to successfully manage this potentially debilitating disorder, there are three areas that need to be addressed to maximize quality of life:įind the Right Doctor: For me, a neurologist who specializes in sleep disorders was critically important, but above all else, your healthcare provider should be someone who will listen, someone who is willing to work with you, and someone who is willing to take the time to educate your loved ones. Narcolepsy is truly an invisible disorder, a daily challenge on multiple fronts over a lifetime. ![]() After all, we look completely healthy and fully capable of functioning at a high level. ![]() We may be accused of not trying hard enough, or making our condition out to be worse than it really is. Never give up!įor those of us living with narcolepsy with cataplexy, at some point someone we care about may refer to us as lazy or even worthless. Today, I am thrilled to say that my cataplexy has been under control for over 10 years and counting. It took years of suffering from the life-altering effects of narcolepsy before I got help to manage my symptoms that has greatly improved my quality of life. Over time and as I experienced many more episodes of similar cataplexy attacks, I began to realize strong sudden emotions (laughter, excitement, sadness, anger, etc.) when in a standing position triggered these attacks. Thankfully, I’ve never completely fallen to the ground during an attack. Needless to say, this event scared my wife to death as she had never witnessed me having continuous multiple cataplexy attacks in a row. It was as if someone operating a light switch in my brain was flipping the switch on and off repeatedly. Each step I attempted to take, my knees buckled again and again, one attack after another, until finally I made it safely to the chair. The second I regained temporary control, I immediately began walking towards a chair, which was several steps away. My knees instantly buckled as I was overcome with emotion. One of the worst cataplexy attacks I’ve had was when my wife delivered some devastating news concerning a family member. It felt like a short circuit within my brain and reminded me of how the lights occasionally flicker off for a split second during an electrical storm. My knees buckled, and I instantly dropped the beverage I was holding. We all jumped to our feet cheering, and for a split second everything just shut off. Our team had just intercepted the ball and ran it back for a touchdown. My first recollection of a cataplexy attack came while I was at a football game. – I began to notice another strange and unusual phenomenon known as cataplexy, which is a sudden loss of muscle control often triggered by strong emotions or certain situations. In addition to excessive daytime sleepiness (EDS), sleep attacks, sleep paralysis, hypnagogic hallucinations, nightmares, etc. ![]() ![]() Completing simple routine tasks became difficult, and people quickly developed less favorable impressions of me. Every aspect of my life was forever changed. Then narcolepsy merged into my lane and knocked me onto a dark, lonely, and bumpy road full of twists and turns. I was an excellent student, athletic, and driven to succeed. Just prior to narcolepsy entering my life, I was on the highway to a bright and prosperous future. ![]()
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