Epilepsy

[amyhughes]

Hi Everyone,

I am new to the disAbilities board and thought I would ask this as it has been weighing on my mind.

I have Juvenile Myoclonic Epilepsy and have been to the parks many times. Fortunately or unfortunately my epilepsy seems to be changing a bit to where I have a massive aversion to repetitive music, seems to trigger nerve jerks and eye fluttering in me for some reason we just can't determine what.

Are there any measures I should take as I know there are many attractions (Small World, Tiki Room, etc.) that have repetitive themes in the music (which I have loved since I was a kid). Lately what I have been doing is listening to these songs in the background while I clean etc. on my iPod. It seems to help when my mind is concentrating on something else versus the actual song.

Any suggestions would be more than welcome!

 

[SueM in MN]

That is interesting. I have never heard anything like that before.

Some of the music is so loud that I would think getting used to it by listening in the background may not help much (more 'intrusive' in real life at the attraction since it is so loud).
I wonder if the type of earphone that are called "noise cancelling" would help.
Or, possibly some of the type of earphones used by shooters or the ones used by people who work in really noisy environments.

 

[amyhughes]

I hadn't thought of those.

What really gets it going is if I start to concentrate and "deep" think or converse while all of the background noise is going on.

 

[soarinfan]

Bose makes a noise cancelling headset. They're an expensive, but really good brand. We have their sound system with our HDTV and it's incredible. Or I wonder if it would help to bring your own music with you. Perhaps if you play that loudly with a good pair of headsets it might cancel out the ride sound. I'd try it out at home first.

There is a guidebook with a section on dealing with epilepsy at Disney called Walt Disney World with Disabilities. It's on Amazon or you can see it at diz-abled.com

 

[amyhughes]

I was thinking about bringing my iPod and just listening to something on that in a low enough volume that I can still hear my kids and hubby. Thanks for the tip about the book, I hadn't heard about it.

 

[soarinfan]

You're most welcome! I hope you have an awesome trip! An ipod might work - can you try it out in advance with some background music or TV?

 

[amyhughes]

I actually have been using it around the house listening to Disney music while I clean. And that is with kids screaming and playing in the background and the T.V. going and I seem to be fine, though it is not repetitive in the background.

What's weird is in trips past my epilepsy never really bothered me. I mean I took my meds etc. But this music thing just kind of creeped up on me along with the concentration thing. If there are too many things going on I just can't focus and I feel myself slipping a bit. I was thinking of talking to my neurologist if there are any techniques to calm and focus in the midst of all this so that my threshold doesn't lower.

I would hate to have a seizure on one of those boats and they stop the ride because of me. Spoiling my trip is fine, hundreds of others not fine (at least in my book). I have noticed when I close my eyes and step back a bit and take deep breaths I can calm down my brain and relax within 30 seconds. I do take my pill every night at 10, and will be keeping them on me in a refridgerated packet (used to house bottles when the kids were babies).

My hubby is good at spotting when I start to GO, so he can usually get me sat or away so that if I do seize I have some privacy and safety. We have a bracelet ordered b/c I am out and about in different parts of our area so often that many people don't know me or my epilepsy signs. So I will wear this and also check in with Guest Relations upon entrance in the mornings and evenings. We take a break midday so I can relax with the kids at the resort during the heat of the day. I found the info on the GAC but am not sure I would require this unless I need to inform ride personnel of what to do in case I seize on or during the attraction.Do you think I should get one as a just in case?

Sorry for the book, but this next time I am trying to plan way in advance b/c I sense a change in my epilepsy and don't want to ruin ours or anyone else's trip because of a lack of planning on my part.

 

[Cheshire Figment]

I would hate to have a seizure on one of those boats and they stop the ride because of me. Spoiling my trip is fine, hundreds of others not fine (at least in my book).

I found the info on the GAC but am not sure I would require this unless I need to inform ride personnel of what to do in case I seize on or during the attraction.Do you think I should get one as a just in case?

First thing is don't worry about what other people think about your medical situation.

Generally if something happens to a person on a ride it is better to just stay on and go to the disembark area. It takes less time than trying to evacuate a person.

Not only does each Park have a First Aid station staffed by at least two RNs whenever the parks is open, but the four major parks also have a Reedy Creek EMT team backstage at each park with a specially equipped golf cart, and they can be almost anywhere within the park within a couple of minutes. If there is any medical emergency just ask the nearest Cast Member to dial 911.

As far as telling CMs in advance at attractions, there is no real reason to do this, as normally the people working the line or boarding are not the ones controlling the ride, and they don't have easy contact with the tower people.

As far as getting the GAC, it is based on what your needs are to be able to enjoy the attractions as well as a person without disabilities. It will not allow you to bypass lines, but if you need to wait in a non-crowded area, depending on the attraction, an accommodation can be made.

 

[Densgirl]

I would hate to have a seizure on one of those boats and they stop the ride because of me. Spoiling my trip is fine, hundreds of others not fine (at least in my book). I have noticed when I close my eyes and step back a bit and take deep breaths I can calm down my brain and relax within 30 seconds. I do take my pill every night at 10, and will be keeping them on me in a refridgerated packet (used to house bottles when the kids were babies).

My hubby is good at spotting when I start to GO, so he can usually get me sat or away so that if I do seize I have some privacy and safety. We have a bracelet ordered b/c I am out and about in different parts of our area so often that many people don't know me or my epilepsy signs. So I will wear this and also check in with Guest Relations upon entrance in the mornings and evenings. We take a break midday so I can relax with the kids at the resort during the heat of the day. I found the info on the GAC but am not sure I would require this unless I need to inform ride personnel of what to do in case I seize on or during the attraction.Do you think I should get one as a just in case?

Hi! Honestly, dont worry about what may happen if you were to need to stop the ride. That would be a blip on the radar of most people's trips. My DS is 17 and we've been lucky in WDW but he has been the reason for busses needing to be stopped and ambulances called on the way to school and things like that. He has had some repetitive myoclonic activity at WDW and out of the small amount of people that have noticed it, they all have been AWESOME.(He is wheelchair bound just FYI so myoclonic activity isn't always as noticible) CM's are usually always great and if you don't feel well and are near any of the medical stations, I cannot say enough about utilizing them. But even the other guests were so cool, asking if they could help or could get medical help for us.

Perhaps a GAC would be helpful for you should you need to avoid the repetition of some of the load areas? Perhaps they could find you a quieter spot to wait? I think the GAC card is helpful if you know exactly what you need to achieve equal access, so I'd be sure to know what you wanted to ask for that may help.

I'd definitely address any concerns you have with your neuro too. Ours is so great about our trips and even hooks us up with a neurologist at Arnold Palmer Hospital should we need that.

I hope you have a great trip and I just knocked wood for it to be totally incident free.

 

[SueM in MN]

So I will wear this and also check in with Guest Relations upon entrance in the mornings and evenings.

I'm not sure what you mean by "check in with Guest Relations".
There would be nothing I can think of that you would need to check in with them.
If it makes you feel more secure, you could check in with First Aid each day to let them know what kind of assitance you would need in case of a seizure, but they would be prepared to deal with things like seizures in any case whether or not you check in with them.
One thing you might want to do that would be quite helpful is to make up a card to have on you that tells some general information about the type of seizures you have, what to do in case of a seizure. Also include a list of your medications and contact information for your doctor.
If the bracelet you ordered is a Medic Alert bracelet, that information is available 24 hours a day by calling the Medic Alert number on the bracelet.
If it's just a 'generic' bracelet that says you have epilepsy, the card is even more important because there are so many types of seizures/reactions after seizures that just knowing you have epilepsy doesn't really tell a whole lot.
A card would still be helpful even with Medic Alert because first responders are not going to call the number on the bracelet right away. Maybe one side of the card could be specific info that you would need emergency responders to know (that would be the place for the doctor's contact info, medications, general description of type of seizure). The other side of the card could be very short with short descriptions in bullet points of what you need (such as)

• I just had a seizure.
• I need to lie down and rest.
• I am not able to walk to First Aid.

etc, with what ever you think you specifically need.

I found the info on the GAC but am not sure I would require this unless I need to inform ride personnel of what to do in case I seize on or during the attraction.Do you think I should get one as a just in case?

As the other posters mentioned, telling CMs at the rides before you get on is not going to really do much. The CMs that are at the boarding area won't be the same ones as are controlling the ride or at the exit.
I think you need to think out what sort things might happen before you go and what type of assistance you will need.
For example, someone having a generalized tonic-clonic seizure (what used to be called Grand Mal seizure) might not need anything if they experienced one during the ride, but might need a considerable amount of assistance and/or a wheelchair when they get off. Some people with myoclonic jerks and eye fluttering might just require some extra direction/leading from another member of their party. If you can figure out where on the line between those you fit, it will help you and your family prepare.
Even for someone with generalized seizures, I agree with the other posters that the fastest way out is usually just going to be riding the attraction to the end and dealing with it at the unload area. For theater shows (like Bug's Life), you will almost always exit from doors exactly opposit where you came in. So, if you think a show might bother you, go all the way down the row as far as you can before sitting down. That wiil put you closest to the exit. A GAC would not really help with anything after a seizure, but a card that you make up ahead of time would be helpful to assist the CMs in knowing what you need.

Also, you may want to have someone look at/listen to ride videos on youtube.com for you. If you do a search for an attraction, you will usually find several versions of it. Some will have better audio than others, but at least you'll get an idea of how repetitive the audio is on that attraction. Some have the same song played throughout the whole attraction (like Pirates, most of the Fantasyland rides, Aladdin's Magic Carpets and Haunted Mansion). Others (like Bugs Life) don't have repetition.

A GAC might help with a quieter place, but for many (like Small World and Tiki Birds), the 'quieter place' is quieter in terms of number of people, but the noise is the same where ever you wait.

 

[whgrn]

One thing a GAC CAN do is allow you to wait in the shade. Most rides do have lines out of the sun, but some do not, and if extended sunlight is an issue for you, this could be very helpful. My DD12 cannot tolerate long periods of direct sunlight, so getting her a GAC could very well make the difference between having a seizure and not having one.

 

[amyhughes]

Let me clarify on the checking in with Guest Relations.

I wasn't sure if you have an epileptic or seizure disorder would you want to alert Reedy Creek etc that you are in the parks, have this medical condition etc.? As I have said I have been many times with my epilepsy but this time for some reason it is sticking out in my mind as something I need to alert folks to. I normally don't like to call attention to it b/c it is well under control with meds, diet, sleep etc. But I guess now that I have had it for over 15 years and that fear of mortality has set in I worry about it more now than I did in my teen years.

I usually don't give a fig for what other people think about me or any disabilities, however watching someone seize can be a scary sight for kids (My Mom has it and the first time she seized in front of us my brother screamed like someone had shot him). Mine thankfully have only seen me have one. But I worry about other children that have not been exposed to this condition as readily as our family has. I don't want to "freak" them out if it was something I could have taken preventative measures to help. I know I shouldn't worry so much, but as I said it is changing and I don't feel the control I once had on this.

Thank you for all of your kind replies. I am going to be speaking with my Neuro before we go and get the names of a few in the area when we travel. I can take the sun and my medication does not make it so my skin is extra senesitive. So I may just have my medical alert bracelet on, AND GET PLENTY OF SLEEP no matter what.

Again thank you for all of your help!

 

[SueM in MN]

Let me clarify on the checking in with Guest Relations.

I wasn't sure if you have an epileptic or seizure disorder would you want to alert Reedy Creek etc that you are in the parks, have this medical condition etc.?

No.
They are prepared for anything that happens. With many thousand people in each park each day, it would not be helpful to them to know that there is someone somewhere in the park who might have a seizure. If all the people with epilepsy, diabetes, heart conditions, allergies, etc who might possibly need EMS contacted them to let them know they were in the park, that would be a pretty long list. And it still would not tell them anything more than you having a medic alert bracelet would.
Besides that, chances are that you would not need EMS even if you do have a seizure.

My DD has had quite a few seizures in the parks (at least one almost every trip) and it really is not a big deal. She has generalized seizures with a lot of whole body shaking, crying out and rubbing her face with her fists, so it's not like she is having them quietly.
Most people are very focused on seeing the sights/getting to their next attraction and don't even notice. Also keep in mind that seeing someone you know and care about have a seizure is much different than seeing a stranger. People who have seen my DD have a seizure (including kids) have been more curious and trying to be helpful than horrified. The biggest reaction we have had (when people have even noticed at all) was a lot of offers of help - Do you need water? Do you want anything? Do you need something so she doesn't swallow her tongue (we explain that can't happen)? Should I get a CM? Do you need an ambulance?
That sort of thing. If people see that we are calm, they are not upset either. Once the seizure is over, we either have her rest where she is or go to First Aid. Once she is resting, people usually go away and don't notice us at all anymore.

One other thing besides rest is make sure to stay hydrated. Dehydration can lower the seizure threshold, so make sure not to get dehydrated.

 

[Densgirl]

Do you need something so she doesn't swallow her tongue (we explain that can't happen)?

Sorry to go off topic but this may be my scariest fear with not being around for one of DS's seizures, that someone may put something in his mouth. We always try to educate people about this too.

 

[amyhughes]

I have had people offer that when my Mother had a seizure in public. I couldn't imagine if I hadn't been there. I told them the best thing to do is not try to restrain her, mess with her mouth or in general bother her. If it looks as though she is really hurting her head try to cushion it, but there have been more injuries I can think of when someone tries to hold a seizing person rather than letting the seizure run its course. My seizures are the type that if someone were to physically restrain me in some way (i.e. holding tightly no guiding or protecting the head) I would really be hurt as in muscle strain or sprain. My DH learned very quickly, protect the head, keep me from really falling hard if at all possible but let it run its course and I will come to with minimal hurting except for a bitten tongue and a dazed look.

 

[SueM in MN]

There were some posts on this thread that were about Epilepsy in general, rather than specifically about Epilepsy in WDW.
I moved those posts into a new thread on the disABILITIES Community Board.

 

[Holly Sox]

Sorry about that, Sue. To get myself back on topic...

Any of you who have epilepsy or who have an older child with it, I mentioned in another post that I am struggling with giving Cody a little bit of space to be a teenager, while still being appropriately vigilant. Do you think it would be a good idea to make an emergency card that would be somewhat visible but not too obtrusive? I can't believe that I haven't gotten his medic-alert bracelet yet... I had planned to do this and time slipped away.

Does anyone have a teen-friendly idea for giving emergency info in case we are separated and he has a seizure?

Holly

 

[whgrn]

Holly, I made cards for both my kids (DD12 has Epilepsy, and DD10 has ADHD) The cards give their name, age, medical condition, medications that they take, the hotel name and phone number, my name and cell number, and the names of the other two adults in our group and their cell numbers. I got this idea from the "Passporter--Open Mouse" book. I laminated the cards and put them in their Passporters. These are pouches that hang around their neck to hold their KTTK cards, as well as $$, Disney gift cards, etc. You could use any type of holder though--just keep them with his KTTK card. Make sure he knows it's there too!

I know how hard it is to decide just how much freedom you can safely give. I know you sure can't compare it to when we were kids! When I was my DDs age, I was babysitting at night for an infant! YIKES! But that was 1972, my parents were around the corner, and I was a very mature, responsible 12 year old. My DD may never reach the point where she can handle babysitting. DD10 can be home alone for an hour with no problems, but if I leave DD for 10 minutes she is calling me asking where I am, when am I coming home, etc. (Note, I do NOT regularly leave my kids alone! But there have been a few times when I've gotten stuck in traffic or held up at a doctor's appointment, so it does happen...)

Have a great trip! I forget your dates. We leave Monday!!!!! 2 more sleeps! Can you tell I cannot wait?

 

[SueM in MN]

Sorry about that, Sue. To get myself back on topic...

Any of you who have epilepsy or who have an older child with it, I mentioned in another post that I am struggling with giving Cody a little bit of space to be a teenager, while still being appropriately vigilant. Do you think it would be a good idea to make an emergency card that would be somewhat visible but not too obtrusive? I can't believe that I haven't gotten his medic-alert bracelet yet... I had planned to do this and time slipped away.

Does anyone have a teen-friendly idea for giving emergency info in case we are separated and he has a seizure?

Holly

That's OK.
I just thought the general Epilepsy questions would get more notice there.

If you don't have enough time to get an actual Medic Alert tag, you can get a similar one in many drug stores (without the ability to call an 800 number for more information). If he doesn't want it seen, you could get the necklace type. EMS people are trained to look for them, whether visible or not. That, along with a card would probably work well. With just a card, EMS may not know to look for a card if it's not visible. With a necklace, they would be more likely to try to find more info.

The Medic Alert website has a lot of more 'teen friendly' bracelets than they used to. We had not enrolled DD in Medic Alert until recently (like you said, time flies). I was surprised how quickly we got the bracelet. You can do the application on-line and I think we had the bracelet 2 business days later.

 

[Holly Sox]

Holly, I made cards for both my kids (DD12 has Epilepsy, and DD10 has ADHD) The cards give their name, age, medical condition, medications that they take, the hotel name and phone number, my name and cell number, and the names of the other two adults in our group and their cell numbers. I got this idea from the "Passporter--Open Mouse" book. I laminated the cards and put them in their Passporters. These are pouches that hang around their neck to hold their KTTK cards, as well as $$, Disney gift cards, etc. You could use any type of holder though--just keep them with his KTTK card. Make sure he knows it's there too!

I know how hard it is to decide just how much freedom you can safely give. I know you sure can't compare it to when we were kids! When I was my DDs age, I was babysitting at night for an infant! YIKES! But that was 1972, my parents were around the corner, and I was a very mature, responsible 12 year old. My DD may never reach the point where she can handle babysitting. DD10 can be home alone for an hour with no problems, but if I leave DD for 10 minutes she is calling me asking where I am, when am I coming home, etc. (Note, I do NOT regularly leave my kids alone! But there have been a few times when I've gotten stuck in traffic or held up at a doctor's appointment, so it does happen...)

Have a great trip! I forget your dates. We leave Monday!!!!! 2 more sleeps! Can you tell I cannot wait?

How cool! We will be there at the same time! We are pulling out around 430 Monday morning. Hopefully we'll be at GKTW by 3 pm. (planning to take it easy and enjoy the ride)

Look for me with my SC Gamecock Crocs on! (Although, if they can't manage to beat Arkansas tonight I might leave them at home)

Disney, here we come!!!!!!

Holly