I would love to have an application that runs on my phone because I have a smartphone that can help manage my narcolepsy disease, make sure I take my meds. Also, something that tells me if I’m beginning to fade on my smartphone. That’s what I would want.

Okay. So, I think that an ideal resource support would be something that blends up to date information on new research studies and whatnot, as far as treatments go, but that also blends an aspect of the support group nature of things like where people with narcolepsy can talk with one another and stuff… various topics, and yet also have up to date information from top sources all in one place. I also really like webinars. It’s sometimes hard to sit down and read an article, but watching a webinar is usually much easier, so that’s a great way to give information. I’ll be honest, I haven’t really looked for many webinars on narcolepsy. I don’t know if they’re out there already or not, or if that’s the thing that I could be utilizing, and currently, I’m not, but I think that would be helpful as well.

I don’t really have an answer to this question. I have been blessed to have really good friends and family and coworkers and doctors who’ve helped me through this experience. The only thing that I would love is to not have it at all, which isn’t an option at this point. It doesn’t really answer your question. But the family and the support system that I do have through friends and coworkers and the Facebook group and those sort of things have really helped me. And I’m very grateful to have that opportunity.

This one’s kind of tricky because I think that there’s a lot of good resources out there now that the internet has evolved and has become more of a resource. I kind of wish that there was more books on it. For me, since I’m old school, I’m like 47, that is what I like to use for my information. I’m a book person. So maybe more autobiographies or more medical books on it would be helpful so I could read it. That’s what I think would be great.

My idea of support resource would be an in-person support group or therapy group, because that would be most helpful to me, to be able to feel the actual in-person warmth and emotionality and be able to discuss not only narcolepsy, but perhaps other illnesses. There could be some crossover. Not just like the national once a year conference, but like weekly meeting.

When you have a sleep disorder, there isn’t any potential resource out there because you basically have a chemical imbalance that only medication can rectify.

I guess in an ideal world it would be great to see some sort of a… I don’t know if there’s a way to do like a support, a phone support, or a text support. Text support would be great. To where there could be if there was an organization that would be willing to check in with patients and just find out how they’re doing, how their medications are working if there’s any way to get support for copay assistance for our medications. I mean, I have a job and consider myself solidly middle class, and yet it’s still, one of my medications is still pretty expensive. So, those things add up. Similar to the support that I get from a diabetes diagnosis, it’d be nice to have something like that, a text messaging check in with the same person, not just an automated, but like an actual person behind it. When I was pregnant, I had someone from my insurance company who would call and check in every month because I was a high-risk pregnancy. Something like that would be nice. It’s not like it would necessarily do anything or that there’d be any actual tangible results from the call. But just knowing that you have somebody that is there and checking up on you is a good feeling.

My ideal support would be as if there was more research done on narcolepsy, and if someone could come out with some type of, or orexin that can break the blood-brain barrier that will allow us to be normal. Other than that, there really isn’t anything for me personally that could change my day to day life.

I think the best would be to find a physician who understands the condition, that would be number one. Somebody who’s willing to change my medications as many times as it takes to figure what plan really works best for me, that would be two. And I think it’s really important that physicians have online portals to connect with, instead of having to call into the office, leave a message, have them call you back. So that’s really huge, having an online portal. And also, maybe connecting with patients directly, somebody close to you that you could talk to. Maybe a support group at a physician’s office, or something like that, instead of connecting with people online. I think the face to face would be better.

I had a brochure when I was first diagnosed that was from the National Sleep Foundation. I can’t remember the name of it off the top of my head, but I haven’t been able to find that now. It speaks about what you can do at work to accommodate versus school, and it’s very quick, and concise, and easily to understand. I wish I could find that again.

I wish there was a better app for Fitbit that would show shorter naps and REM cycles, shorter sleep cycles. If I am going into REM or deep sleep because as of now, my Fitbit does not show five minute nap, 10 minute nap. It doesn’t go under two hour naps. It will show up, but doesn’t say what sleep cycles I am in. That would be a really good resource for us, so that we can actually track shorter naps.

I wish there was a cure for this and I didn’t have to take medication, but there is no cure for narcolepsy. There isn’t. I don’t know if it’s an obstruction in your nervous system, but if there was some surgery where they could fix something. That’s a little too, probably, advanced. Would probably happen once I’m no longer alive. But if I could have some kind of surgery where I didn’t have to rely on a medication, I would like that. But the medication is helping so why mess with it?

I wish that there were more doctors who are knowledgeable about narcolepsy. I wish that I could have some kind of an app that would not allow me to press the snooze button. So some kind of alarm that doesn’t have a snooze option could be a good resource. Other than that, I would like doctors to have more information.

I would like to be able to find other resources of medicines that you can take that are not stimulant [event], addicting stimulants, like Adderall and things like that. More things like the Provigil, like I’m taking. So that maybe different strengths or when this one’s not working, be able to compare and contrast side effects of the medicines and what would work best for me.

I live in a rural area. I commute and my commute to work is an hour into a metropolis. I make the drive fine going into work. Coming home, I pull over multiple times to be safe, to be a safe driver. So sometimes that one hour drive, 56 miles, turns into three or four hours. So it would be nice if there was a transportation service that was affordable for commuters from Boaz to Huntsville, Alabama, and back. Moving isn’t an option because of cost of living is 75% cheaper just to commute with the 5% cost for commuting. So, yeah.

Well, I guess ideally an electronic device that can help me track my evening and sleep patterns, as well as kind of measure my daytime tiredness. The closest thing I have to that is my husband. He is amazing and he will look back on a day and say, on a scale of 1 to 10, you were a 6, an 8, a 2. But an electronic device that can help me track in the evening what I’m eating in the evening, what time I’m going to bed, what time I’m taking my medications, how I’m sleeping, and then somehow monitor my tiredness throughout a day so that I can kind of put data together and see what the best combinations work to give me as much alertness as possible. I guess that would be a great electronic device.