10 replies to this topic

[smg08009]

I was diagnosed with N w/C yesterday. During the course of the appointment, my doctor told me I need to get a medical alert bracelet or necklace in case I cataplexy away from people who know about my condition. I'm starting nursing school next month and my family has advised me not to tell the school about my diagnosis (I'm not sure how I feel about keeping it a secret...) for fear of them kicking me out. I've only ever had one full body cataplexy attack, the others have been minor muscle weakness in my hands and knees. However, I did have a "minor" attack while running a few weeks ago and fell. I ended up cutting my legs pretty badly. I agree with my doctor that a medical alert ID is a good idea for when I'm out alone, but is it really something I need 24/7? How can I keep my condition quiet at school if I'm wearing a med alert?

[deoir]

@smg08009, I only have very mild C but I hope you won't mind me sharing my thoughts. Your C seems like a pretty dangerous symptom, so I think your doc suggesting the med alert tag 24/7 makes sense. I googled the tags and a lot of them look like pretty bracelets/necklaces that could pass as everyday jewelry.

I'm not sure about nursing school, but I'm a biomed grad student and I found that when people didn't know about my condition, they immediately assumed that I was lazy because my nighttime sleepiness, EDS and SP kept me at home a fair bit and when I was at school, I'd be falling asleep in class or at my bench. My boss still isn't happy with my work even though he knows I have IH (diagnosed last month, but had EDS for 10 years) but that's his own high expectations. If I hadn't told him about my SP and that I was seeking diagnosis, he'd have fired me months ago. When I first told my coworkers, they went, "Ooooooooooooooooohhh."

I read somewhere on this forum and a bunch of others that the Americans with Disabilities Act covers N. I'm pretty sure your school can't kick you out just for having N. Then again, I'm also a newbie so my opinions and info could be bad.

Good luck!

[tabster1]

Considered the med alert bracelet thing as well, but then you have to figure out what to put on it. I think there's a thread somewhere on here where the person had a full body attack, the EMTs show up and are like "What's cataplexy?" and took them in anyway.

[Sisu]

Some people know. And they're trianed to look for tags. I haven't gotten them yet because mine's pretty well controlled, but I'm sreiously looking at getting one again. The advantage is that if you get the ones where there's a service, too, they keep your medical info on file and should you be in an accident, or something non-narcolepsy-related, they will know you have narcolepsy, what meds you are on, etc. Imagine being admitted for something random like appendicitis, and not having access to your meds, having them think you're delirious if you're having a sleepiness episode and trying to talk to them!!

So it's on my to-do list, just in case. Also, put a card in your wallet with your doc's info, your conditions, and your medications. There's also the option of printing out a "what is narcolepsy" card and putting that in your wallet, too. If you're found on the street for whatever, the paramedics will check your ID and see it.

[Hank]

Some people know. And they're trianed to look for tags. I haven't gotten them yet because mine's pretty well controlled, but I'm sreiously looking at getting one again. The advantage is that if you get the ones where there's a service, too, they keep your medical info on file and should you be in an accident, or something non-narcolepsy-related, they will know you have narcolepsy, what meds you are on, etc. Imagine being admitted for something random like appendicitis, and not having access to your meds, having them think you're delirious if you're having a sleepiness episode and trying to talk to them!!

So it's on my to-do list, just in case. Also, put a card in your wallet with your doc's info, your conditions, and your medications. There's also the option of printing out a "what is narcolepsy" card and putting that in your wallet, too. If you're found on the street for whatever, the paramedics will check your ID and see it.

I have a bracelet for Cataplexy- muscle paralysis of legs, face, neck or voice. My main reason for this is to protect myself from suspicion of being drunk. Not too long ago I was pulled over for a minor violation. I was startled by the police lights and when the officer spoke with me she asked if I had been drinking. I can't blame her for thinking that- my speech was slurred, my face was slack and my head was bobbing. After backup arrived, they searched my trunk and wanted to call an ambulance. If this ever happens again, I want to offer a credible explanation that does not sound like made up excuse. The bracelet seems like reasonable protection. It also shows that I take this seriously. I cannot explain C when I am experiencing it. I expect confusion regardless, I just want to make my best effort to minimize/ prevent confusion.

[smg08009]

Thanks for your replies everyone! I ended up ordering a (pink! ) med alert tag from laurenshope.com. I wear it as a necklace when I'm away from home and can easily tuck it into my shirt when I'm at school or just want it to be less conspicuous. I'm afraid of my school finding out about my diagnosis since it's a hospital based program, and this hospital is part of a network that controls the other two large hospitals in my area. I know someone who was has been in a legal battle with one of these hospitals after losing her job in violation of the Americans with Disabilities Act. Even though it's a huge pain, and has been the most difficult part of diagnosis for me to deal with, I think it is best I keep it quiet for the time being. I had never thought of a cop thinking I was drunk, but I could definitely see it happen! I've been known to slur my words and get clumsier when I'm in trouble. I'd never really thought much of it, but hey maybe it's cataplexy.

[drago]

I was diagnosed with N w/C yesterday. During the course of the appointment, my doctor told me I need to get a medical alert bracelet or necklace in case I cataplexy away from people who know about my condition. I'm starting nursing school next month and my family has advised me not to tell the school about my diagnosis (I'm not sure how I feel about keeping it a secret...) for fear of them kicking me out. I've only ever had one full body cataplexy attack, the others have been minor muscle weakness in my hands and knees. However, I did have a "minor" attack while running a few weeks ago and fell. I ended up cutting my legs pretty badly. I agree with my doctor that a medical alert ID is a good idea for when I'm out alone, but is it really something I need 24/7? How can I keep my condition quiet at school if I'm wearing a med alert?

LOTS of people have Med Alert jewelery - if they have a rare blood type, diabetes, etc. So just because you have a Med Alert doesn't mean anyone will suspect WHAT you have. After all, the entire reason for wearing the tag is so EMT and/or emergent medical aid will be informed. I have one that reads "SLEEP ATTACKS NOT SEIZURES" -- I don't have cataplexy, but just in case, I wanted to have something so people would know I'm not seizing OR drunk...

drago

[tjunderw]

Hey SMG08009,

I too have thought about the med alert products, but was really interested in reading about your nursing issue. I actually started a post recently in the education section because I am applying to nursing school right now. Before I applied I met with the undergraduate dean and am glad I did as she was amazingly supportive and accomodating with my narcolepsy. I was afraid nursing programs would frown upon someone with this type of unpredictable condition but she assured me that my health is just as important to the program as the health of those I will be working with. It might be a good idea to inform a lead professor or staff member about your narcolepsy just so you know there is someone to help you in the chance you're feeling overwhelmed. And I don't know about your program, but most around my area require their students to pass drug tests so even if I wasn't up front about discussing my narcolepsy, I'd eventually have to deal with that. You posted this a few months ago so hopefully you are having success and enjoying nursing school!!

[LauraL]

I have a bracelet from medicalert.org, but I've had it for much longer than I've had my narcolepsy diagnosis, as I have asthma and food allergies. Medicalert is a subscription service--they keep your emergency information on file, and the bracelet has the phone number to call along with your member number. You can make changes online to keep your medication information and so on up to date, and print out a new wallet card with your info at any time. (I sound like I'm doing an advertisement for them!) The other thing is that because there's additional information available to emergency responders through medicalert, you don't have to have anything you want kept private engraved on your bracelet. Mine has nothing about narcolepsy, for instance, but all of that information is available when the first responder calls. I like knowing that an ER doctor would be able to get a complete list of the medications I take (which has, sadly, grown to be rather extensive over the last few years). It's about $40/year for membership, which for me is well worth the peace of mind.

(Also, the engraving is pretty inconspicuous--you'd have to get pretty close to read what it says. I have several coworkers who wear them, and I have no idea what conditions they have.)

Congrats on nursing school! Does the university the program is affiliated with have a disability resource center, or equal opportunity center or something similar? If so, you might talk to a counselor there about your situation. That might allow you to explore your options without people in your program finding out.

Good luck!

[The Dreamer]

I got a bracelet....but then I've lost so much weight since being on Xyrem...that its too loose, and become a safety hazard. I tried getting the next size down, but its just too short for me to get the clasp....so I switched to an elastic strap one....except that it doesn't seem to like to get wet, so I take it off when I shower, go to bed, etc. But, then forget where I've put it...and often go out without it.

Hopefully, I'll at least remember to bring it with me to the conference....and then we'll see what I do for a more permanent solution afterwards.

The Dreamer.

[tabster1]

I'm curious to know what people have gotten engraved on it. And if you do the cataplexy description card in the wallet, what does that say?

I'm considering one like this because it is easy to update if your meds changed\, and all the info is on the inside.