Fibro & DL

[TulipsNZ]

I am coming to DL after a whirlwind world trip, generally I cope well as long as I am good with all my medications, I know however that stressful situations an overdoing it can trigger a major flare in symptoms so doing Disneyland scares me in that I am doing it with my two boys 6 & 8 and want it to be amazing for them and not affected by the fact their mother couldn't cope - I hate this bit. For me I cope best if I get rest and don't have long periods of standing, I can cope with walking but too much and I know I will crash. I recently pushed too hard and ended up with my immune system shutting down and in hospital. I do not want to end up in an ECV or wheelchair but it seems that Disney thinks this is the solution now to those who cannot cope with long waits? Is this true? what is the best thing I can do to make this the best trip for me, my boys and my husband?

 

[bidnow5]

Disney's answer will be an ECV or wheelchair you don't have to use it all the time you can park it and walk till you need it if you get a wheel chair you can push it till you need it then just sit while in long lines

 

[tobikaye]

I know you said you did not want an ECV or wheelchair, but have trouble with the standing. Would you consider a rollator? This would give you the instant seat you might need. In fact, it is helpful in situations where Disney does not provide any assistance at all, such as standing in line at stores or food places or waiting for a parade.

A rollator can be useful for anyone that cannot stand for long periods of time, but want to be able to do everything they normally do. It might be to give you kids the best visit that you need to use something to help you get through your day. I have not been to DL, but it does not seem to matter where I am, traveling or local, that a seat to sit is never close when it is needed.

 

[Allison]

To make it the best trip for your family you do need to consider the ECV or an alternative.

 

[lanejudy]

.... For me I cope best if I get rest and don't have long periods of standing, I can cope with walking but too much and I know I will crash. ...

This sentence speaks volumes:

"For me I cope best if I get rest" suggests you shouldn't plan to tour commando-style -- in the parks from rope drop to closing, trying to do it all. Plan enough days that you won't feel so stressed. Plan to have downtime at the resort each afternoon then back to the parks for evening, or maybe a nice (longer) table service meal break mid-day and back to the resort by dinner and skip the evening at the park.

"Too much [walking] and I know I will crash" means you need to take frequent breaks and strongly consider an alternative to walking. That might be an ECV - which will provide you the most independence - a wheelchair that you can push when you want to walk but sit when you need to, or another mobility aid like a rollator described above.

"...don't have long periods of standing" indicates you need to have a seat while in queues. The only way to guarantee this is to essentially bring that seat with you -- in the form of an ECV, wheelchair or rollator. Queues are generally continuously slow-moving, not standing still for long.

You are welcome to discuss your needs with Guest Relations at the park. However, you should be prepared for them to suggest a mobility aid. You indicate you want this trip to be fun for your boys -- and the best way to do that is to take the appropriate measures to allow you to participate as well. I'm sure they'd love an extra day or two in the parks to ensure you are able to join them for all the fun without leaving them to go rest.

Enjoy your vacation!

 

[aaarcher86]

I am coming to DL after a whirlwind world trip, generally I cope well as long as I am good with all my medications, I know however that stressful situations an overdoing it can trigger a major flare in symptoms so doing Disneyland scares me in that I am doing it with my two boys 6 & 8 and want it to be amazing for them and not affected by the fact their mother couldn't cope - I hate this bit. For me I cope best if I get rest and don't have long periods of standing, I can cope with walking but too much and I know I will crash. I recently pushed too hard and ended up with my immune system shutting down and in hospital. I do not want to end up in an ECV or wheelchair but it seems that Disney thinks this is the solution now to those who cannot cope with long waits? Is this true? what is the best thing I can do to make this the best trip for me, my boys and my husband?

The DAS doesn't shorten waits, but the issue is not you coping with long waits. It's that you can't stand for long periods, or walk too much. Those are mobility issues and a mobility aid will be the response.

 

[Goofy14sure]

The last thing I would want to do on my vacation would be to end up in the hospital. There is a tremendous amount of walking involved in any Disney visit and the only way around it is an ECV or a wheelchair. With a wheelchair someone will most likely have to push you and that's not much fun for them. Get an ECV, you won't have to walk as much, you won't have to stand as much. Hope you have a great trip!

 

[TulipsNZ]

http://www.amazon.com/TravelChair-1..._sim_lg_3?ie=UTF8&refRID=13WS85D1CJY7KGCM74BT

Has anyone used one of these? I think this may be a good solution, my husband could carry it, would Disney be ok with this, me using this in lines etc?
I am looking into an ECV if I find I don't cope but thought this would be handy anyway.

 

[lanejudy]

Many people ask about these. Unfortunately, WDW does not allow any type of portable folding chair/seat. For lines, you really would not have time to set it up and sit before needing to nudge up a few more feet, repeat.

However, they will allow a cane-seat -- that's a walking cane that opens out to a seat. You'll have the same issue as above with regards to slow-moving lines. But the cane-seat, like a rollator, is considered a mobility aid and acceptable.

Enjoy your vacation!

 

[asta]

http://www.amazon.com/TravelChair-1..._sim_lg_3?ie=UTF8&refRID=13WS85D1CJY7KGCM74BT

Has anyone used one of these? I think this may be a good solution, my husband could carry it, would Disney be ok with this, me using this in lines etc?
I am looking into an ECV if I find I don't cope but thought this would be handy anyway.

I too am looking for some way to cope with pain without using an ECV so I think this looks like a great option. Or maybe one of those canes with a fold down seat. I think I have read that the stool may not be allowed but maybe the cane/stool combination has been allowed in the past. A couple of questions: What do you do with something like that while on a ride? Some rides want you to secure items and both of these items could be a little big. A cane or a stool could be like a loose missile on rides like Space Mountain or Rock n Rollercoaster.
I also wonder if these items used by several people could really slow lines. If I need to rest my damaged knee while in line, everyone will have to wait for me to get up and move my device along.

 

[asta]

Many people ask about these. Unfortunately, WDW does not allow any type of portable folding chair/seat. For lines, you really would not have time to set it up and sit before needing to nudge up a few more feet, repeat.

However, they will allow a cane-seat -- that's a walking cane that opens out to a seat. You'll have the same issue as above with regards to slow-moving lines. But the cane-seat, like a rollator, is considered a mobility aid and acceptable.

Enjoy your vacation!

You posted while I was slow typing but I do have a question about what happens with the cane-seat. Do the CMs watch it while you are on the ride or can you take it on coasters?

 

[TulipsNZ]

Many people ask about these. Unfortunately, WDW does not allow any type of portable folding chair/seat. For lines, you really would not have time to set it up and sit before needing to nudge up a few more feet, repeat.

However, they will allow a cane-seat -- that's a walking cane that opens out to a seat. You'll have the same issue as above with regards to slow-moving lines. But the cane-seat, like a rollator, is considered a mobility aid and acceptable.

Enjoy your vacation!

Thanks I looked up the cane seat, that would be even betteras I could lean on it if there is not time to sit. Thank-you

 

[powellrj]

I have this one that I use to use before I got my rollator.

http://www.foldingsticks.com/Seat-Canes/folding-cane-with-sling-style-seat.html

I also have this one
http://www.foldingsticks.com/Seat-Canes/adjustable-seat-cane.html

 

[Goofy14sure]

Thanks I looked up the cane seat, that would be even betteras I could lean on it if there is not time to sit. Thank-you

A cane seat is good idea. You can use it in places too tight for an ECV and a cane IS great to lean on

 

[ammag]

I have CFS and fibro, arthritis too. We had a very short trip last fall and I overdid it the first day, used an ECV for the letter half of the day following. I felt odd at first since it was my first time and it was for my mom, who ended up not needing it as much as I did the second day. Without it I would have had to leave halfway through the day which would have broken my heart! For me it was much easier than worrying about carrying a cane chair, but my biggest issue wasn't just standing or resting but mobility.

Our next trip is two weeks long to ensure I have downtime and flexibility for flares and I will be getting an ECV again to use when needed. Of course because it's a long trip we have to save for more than two years to make it happen..lol. Hoping it's worth it. Also think about some meds for breakthrough pain?

 

[TulipsNZ]

I ordered a cane seat, I received it today and it seems very good, I will change the cane tip as it's a little slippery if I need to lean heavily (I think it's designed more for walkers than leaners) I have been looking at lots of ways to help minimise pain and am taking some painkillers on the trip, also some sleeping meds which I never normally use but due to constantly changing time zones it seems a good idea.

 

[WheeledTraveler]

If your doctor hasn't already suggested it, you might want to trial the sleep medication while you're still home. That way you'll know if it gives you any problematic side effects.