FOP and Epilepsy

Blue21 · 25 Jul 17, 03:02 PM

My stepson was diagnosed with Focal Eplilepsy a couple of years ago at the age of 26. This will be his first visit after the diagnosis and he his worried about the affect of some rides. Our 60 site stay is about to kick in and he doesn't want us wasting FP on things he can't go on. (I know he can possibly get a DAS as well). I know every case is different but was wondering if anyone with Epilepsy had been on FOP yet and did it cause any problems. I think he is more worried about being sort of strapped into the bike thing in case he can't get off if he has a seizure.

Tiggerific2018 · 7 Sep 17, 05:24 PM

I know this is an old thread, but I would be interested in any new replies you get and/or your stepson's experience once he goes. Does he lose consciousness when he has a seizure? If not, are you able to tell when he is having a seizure? My husband has epilepsy and I definitely intend for him to get a DAS, but we are also particularly worried about the 3D rides like FOP.

In your position, I would probably explain the situation to the cast member, show the DAS, and ask how you or he can signal them if he needs out - they must have an emergency stop procedure. My husband won't advocate for himself but I have zero problem advocating for him, and until you are in that position you have no idea of the power that the word "seizure" holds!

There isn't a seizure warning on the ride, so hopefully it shouldn't trigger a seizure, though it might make him feel unwell/motion sick. I have been getting my husband to watch the ride videos on YouTube to see what he thinks, which has been quite helpful so far - we have already ruled out a couple of rides that make him dizzy just watching on the computer.

Sorry I can't be of more help, since we haven't been yet, but good luck, and I hope that your stepson is able to enjoy the trip totally free of seizures.

p.s. If he hasn't been anywhere really hot since he started having seizures, be aware that heat can be a trigger. We discovered during a 6 month stay in Australia that my husband has seizures when it goes above 30c, no matter how hydrated he stays. It just seems to be the heat and/or an effect of the meds.

**Bootrip2** · 7 Sep 17, 07:15 PM

Does anyone know of a list of rides to avoid or are OK for epilepsy sufferers?

Tiggerific2018 · 7 Sep 17, 07:33 PM

It will really depend on the type of epilepsy and the triggers: Disney's statement on it is that they use a lot of lighting and other visual effects so those with photosensitive epilepsy (which is about 3% of those with epilepsy) need to be aware of that on most rides. However, on the WDW page for each ride there is an accessibility statement that covers everything from wheelchair access to heart problems, and a few of them mention seizures. (Universal have one big list for all the rides, and almost all of them except the kiddy rides have a seizure warning attached, probably more for liability exclusion than any real issue, but we're not prepared to risk it.)

Beyond the worry of having a seizure at any time, which everyone with epilepsy worries about, does he have any specific concerns? Does he have photosensitive epilepsy? If not, there's no reason that he can't ride anything that he is safely strapped into, but shouldn't ride anything that he has to control (e.g. go-karts) or hold himself into, just in case he loses consciousness.

One thing that might make him more comfortable in flashing lights is to cover one eye, which disrupts the impulses going to the brain as the eyes are not both seeing the same thing. Another is just to have a plan for what he can do if he feels unwell or if he gets any kind of aura/warning, which some people do.

Another suggestion for getting advice would be the Facebook group for one of the epilepsy charities. Epilepsy Scotland has a really helpful Facebook community (even if you aren't in Scotland) and I would imagine that Epilepsy Action has similar. If he uses Facebook, he could post there for advice, or PM them and the mod will post the question so that he can stay anonymous if he wishes to.

Tiggerific2018 · 7 Sep 17, 07:38 PM

Just to add, the advice I got from somewhere is to go to Guess Services when you first arrive at each park, explain the situation, and they should be able to give advice.

Also, if his seizures aren't under control then he is in more danger at the water parks than at, say, MK. Water danger is not something that springs to mind for most people but is actually more of a risk. Basically, he just needs to do a risk assessment of each ride: "If I had a seizure on this ride, what would happen?". The answer to that depends on whether he has absence or tonic-clinic seizures, but water parks could be a problem either way.

sophie1405 · 10 Sep 17, 10:57 PM

I have epilepsy and went on FOP last week. i don't have light sensitive fits but i found the ride great to go on. It was one of the best 3d rides id gone on, i didn't feel sick coming off like i have with others. the bike is secure and keeps u in place so would not fall out or off. If he was to have a fit i don't think a cast member would see however it is down to when and how he has seizures i found i done great on this ride.

7 Sep 17, 05:24 PM	#2
	7 Sep 17, 05:24 PM Tiggerific2018 Helping Mickey
Tiggerific2018 Helping Mickey Join Date: Aug 17	I know this is an old thread, but I would be interested in any new replies you get and/or your stepson's experience once he goes. Does he lose consciousness when he has a seizure? If not, are you able to tell when he is having a seizure? My husband has epilepsy and I definitely intend for him to get a DAS, but we are also particularly worried about the 3D rides like FOP. In your position, I would probably explain the situation to the cast member, show the DAS, and ask how you or he can signal them if he needs out - they must have an emergency stop procedure. My husband won't advocate for himself but I have zero problem advocating for him, and until you are in that position you have no idea of the power that the word "seizure" holds! There isn't a seizure warning on the ride, so hopefully it shouldn't trigger a seizure, though it might make him feel unwell/motion sick. I have been getting my husband to watch the ride videos on YouTube to see what he thinks, which has been quite helpful so far - we have already ruled out a couple of rides that make him dizzy just watching on the computer. Sorry I can't be of more help, since we haven't been yet, but good luck, and I hope that your stepson is able to enjoy the trip totally free of seizures. p.s. If he hasn't been anywhere really hot since he started having seizures, be aware that heat can be a trigger. We discovered during a 6 month stay in Australia that my husband has seizures when it goes above 30c, no matter how hydrated he stays. It just seems to be the heat and/or an effect of the meds.

7 Sep 17, 07:33 PM	#4
	7 Sep 17, 07:33 PM Tiggerific2018 Helping Mickey
Tiggerific2018 Helping Mickey Join Date: Aug 17	It will really depend on the type of epilepsy and the triggers: Disney's statement on it is that they use a lot of lighting and other visual effects so those with photosensitive epilepsy (which is about 3% of those with epilepsy) need to be aware of that on most rides. However, on the WDW page for each ride there is an accessibility statement that covers everything from wheelchair access to heart problems, and a few of them mention seizures. (Universal have one big list for all the rides, and almost all of them except the kiddy rides have a seizure warning attached, probably more for liability exclusion than any real issue, but we're not prepared to risk it.) Beyond the worry of having a seizure at any time, which everyone with epilepsy worries about, does he have any specific concerns? Does he have photosensitive epilepsy? If not, there's no reason that he can't ride anything that he is safely strapped into, but shouldn't ride anything that he has to control (e.g. go-karts) or hold himself into, just in case he loses consciousness. One thing that might make him more comfortable in flashing lights is to cover one eye, which disrupts the impulses going to the brain as the eyes are not both seeing the same thing. Another is just to have a plan for what he can do if he feels unwell or if he gets any kind of aura/warning, which some people do. Another suggestion for getting advice would be the Facebook group for one of the epilepsy charities. Epilepsy Scotland has a really helpful Facebook community (even if you aren't in Scotland) and I would imagine that Epilepsy Action has similar. If he uses Facebook, he could post there for advice, or PM them and the mod will post the question so that he can stay anonymous if he wishes to.

7 Sep 17, 07:38 PM	#5
	7 Sep 17, 07:38 PM Tiggerific2018 Helping Mickey
Tiggerific2018 Helping Mickey Join Date: Aug 17	Just to add, the advice I got from somewhere is to go to Guess Services when you first arrive at each park, explain the situation, and they should be able to give advice. Also, if his seizures aren't under control then he is in more danger at the water parks than at, say, MK. Water danger is not something that springs to mind for most people but is actually more of a risk. Basically, he just needs to do a risk assessment of each ride: "If I had a seizure on this ride, what would happen?". The answer to that depends on whether he has absence or tonic-clinic seizures, but water parks could be a problem either way.