Having a SD would be very helpful for the times that I would like to be more comfortable by having my head in a more proper, upright position. My neck gets strained during most of my episodes, which can get to be very uncomfortable. So when these episodes occur, what do they look like? Well, they FEEL a lot like forehead smacking, awkward and uncomfortable neck straining, painful wrist contorting, and eyeglasses smooshing. Knowing this, a SD will always be helpful for the times it gets incredibly overwhelming to handle. A SD could provide deep pressure therapy (DPT) to calm my senses and emotions to ease or prevent any current or oncoming anxiety. Their body pushing into mine can lower heart rate and blood pressure, which allows for a quicker recovery if in the midst of intense anxiety. This, in turn, helps avoid the potential risk of serious harm from a cataplexy attack. Anxiety is part of my personal brain chemistry, so I'll always be challenged with it. As you can see, this has always been part of me. This is due to sleepiness weakening my facial muscles. Laughing gets me to a "6" the quickest! In my backstory at the top, I mentioned how I sleep with a frown. Laughing, surprise and anxiety are my personal top three triggers. are classic examples of emotions people with Cataplexy get triggered by. Laughing, joy, frustration, sadness, anxiety, fear, surprise, anger, etc. On a scale from 1-10, once my emotions reach a strong level “6”, my body gets weaker and weaker and I have an episode as a result. Narcolepsy with Cataplexy is Narcolepsy Type 1. ![]() This is the most vital aspect of having a SD for me because there is always that risk looming over me. I cannot move or talk during these instances, and heightened anxiety can prolong my episodes even further. A SD would be trained to nudge me free, or bark for help. If I'm in bed relaxing watching TV or reading and happened to have an episode, my face could easily fall directly into my pillow. A Service dog could be an active and trained eye for each of my episodes. *EDS causes zoning out, intense brain fog, memory loss, and constant body weakness/heaviness in all my limbs and joints (omg, my knees!!) The exhaustion creates what I call, “episodes”, where I lose control of my involuntary movement and it all becomes voluntary-and suddenly I’m asleep. *Below I am presenting my personal (top three) challenges in having this disorder, and how a Service Dog can be greatly beneficial to my daily life.Įxcessive Daytime Sleepiness (EDS) -EDS, for a normal individual, is comparable to 48-72 hours of sleep deprivation-everyday. For any action that is taken to help me, I am truly thankful. However, I know the risks of my disorder and live with a great lack of independence everyday, and I truly understand how a service dog would benefit my life. This fund may take years to complete, as the monetary value of an already trained service dog is always going to be a costly one. I am asking for your kindness shown through donations, sharing this page on social media, and by word of mouth to help me get a Service Dog. I do not proceed with this request lightly and it is a deeply personal decision to make public. Despite what will continue to be a lifelong challenge, I am reminded on a daily basis that I have a lot to be thankful for-and I am grateful for that perspective.Īsking the public for money is difficult to do, especially since it’s for something that directly benefits myself, not another person or cause. I went to the girl’s locker room and slept on the floor instead of going back to my two hour dance fitness class. More currently, I lost my license, job, and overall sense of independence and normalcy due to my disorder. But I couldn't bear the thought-I was exhausted. I got turned away one day and was told to head back to class. In high school, I went to the nurses office often to lay down to go to sleep. At 15, I’d easily sleep until noon in the summer. At middle school sleepovers, I was the first one asleep-by hours. As a toddler, my parents woke me up in the morning-I didn't wake them up. I was always told that out of my parent's five kids, I was my parents only newborn to sleep soundly through the night, and that I've slept with a little frown my whole life while I sleep. This is a neurological disorder that greatly affects my daily living and quality of life. My name is Emma Rose Bianco, and I have Narcolepsy with Cataplexy.
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