Julie Flygare’s Narcolepsy: Not Alone Campaign


Patrick and Jessica
Ohio, USA

Here is my submission with my wife for Julie Flygare‘s Narcolepsy: Not Alone Campaign.

It is an awareness campaign “to prove that narcolepsy is REAL and that we are NOT ALONE. People with narcolepsy AND supporters are invited to submit photos for the GALLERY & MAP.”

Learn more at http://julieflygare.com/narcolepsy-not-alone/


Memory Issues

One of the most frustrating parts of having narcolepsy is all of the memory problems that accompany it. My memory is terrible for the most part and it seems to keep getting worse the older that I get. The memory problems with narcolepsy are caused by not getting an adequate nights sleep. I have read studies that say that a person with narcolepsy has the same level of functioning and sleepiness as someone who has gone 48 to 72 hours without sleep, or someone who has only slept for 2 to 3 hours a night for a prolonged amount of time. Long term sleep deprivation can cause brain damage (most people with narcolepsy get a full night of sleep but have sleep deprivation due to poor quality of sleep).

I am constantly forgetting things which is extremely annoying. I can have a conversation with someone on the phone and forget the entire conversation after I hang up with them. There are many times when I forget where I put things, I try to always put things in the same place so that I will always know where I put them. If I don’t place something where I normally put it I won’t remember what I did with it, so I am constantly misplacing things. I also forget to do things that I need to do on an almost daily basis, I am constantly forgetting to take things with me that I need. I also have a very hard time with directions, I can’t remember how to get to places unless I have driven there several times, and if I haven’t driven somewhere in a long time I forget how to get there also. I have to use my GPS to get to a lot of places, and if someone gives me directions to a place I have to use my GPS anyway because I can’t remember what they told me. If I don’t use my GPS even when going places that I have only driven to a few times I often get lost and forget where to turn and end up having to rely on my GPS anyway. It is very frustrating not being able to trust your own memory.

I also have trouble remembering the past and there are many parts of my life that I just don’t remember. I also do things without any recollection of what I had done. I have gone to the grocery store before, driven home, then gone inside and left the groceries sitting in the trunk for several hours. I forgot I had even gone to the store until my wife came home and told me that all the groceries were still sitting in the trunk. I will also forget to put things away after dinner, today I cleaned up after we ate dinner and left the mayonnaise sitting on the counter for several hours because I forgot to put it away.   Sometimes I even do weird things like throwing dirty dishes in the garbage then putting garbage in the sink without even realizing that I did it. People find me unreliable because I forget to things that I said I would do for them even though I fully intended on doing them I just didn’t have the ability to remember. I often have to set reminders on my phone to remind me to do things because I don’t remember to do things unless someone or something jogs my memory. These are all pretty common problems for people with narcolepsy and it doesn’t seem like there is much that can be done to help it. The only things that I have seen suggested are things like setting reminders, using post-it notes, and calendars. It gets frustrating because I am only 31 and I feel like I am going senile. At least I know that I am not alone and plenty other people with narcolepsy have the same issues.