Disney with Chronic Pain

[camlgt]

I was wondering if anyone out there has any tips for people with chronic pain. My wife has severe hip problems resulting from an accident as a child, and I have severe pain in my right arm from nerve damage done by a cold therapy unit after one of my 5 shoulder surgeries. We both have fairly decent pain management for the day to day normal activities. Mine is severe enough to keep me from working but the meds make life tolerable. I know my wife is going to pay dearly with all the walking. I don't see a wheel chair as being an option for her. IF there are any tips from people that have any experience with this I would appreciate it. I have a feeling the hottub back at the hotel every night is going to be a requirement.

Camlgt

 

[Cheshire Figment]

Hi and to disABILITIES!

I would strongly suggest the use of an ECV for her. It appears, from your problems, that having her in a wheelchair and you pushing is not an option.

Most people tend to walk 8-12 miles per day at WDW. Once around the World Showcase Lagoon Promenade, without actually going into anything in the countries, is about 1½ miles.

Basically a person has a certain amount of energy available to them daily. If they relax during the day the amount of energy available will increase; when they sleep at night they recharge their system,

However, when in pain energy is used up much faster than in normal conditions. If you become exhausted, with by what you have done or, more importantly, what you have done while in pain your system will not recharge to the original energy level overnight and you are starting the next day with a lower amount of energy available.

 

[clanmcculloch]

Could you please explain the reasons why a wheelchair wouldn't be an option for her? This will give us a better understanding of the type of problems that she has since hip problems can vary quite a bit. With a better understanding we can hopefully offer better suggestions. For instance, if she can't use a wheelchair because you can't push her due to your own arm pain then she could consider an ECV. If she can't use a wheelchair because she needs to be able to alternate between walking and sitting then maybe you could drive the ECV for a while or she could push a walker that has a seat so she can sit in queues and waiting areas.

Have you looked through any of the threads about WDW with fibromialgia or MS? Both of those involve chronic pain even if they are different types of pain than you're describing.

 

[bearlyanne]

A scooter seems to be the best (only) way to go, since pushing someone in a wheelchair can be exhausting even for those best in shape.

But,one thing to consider , is will you be able to lift the ecv parts out of the car with your shoulder? The individual parts can be heavy. If you are staying onsite, it wont be a problem, but if you plan on driving to the parks each day, you might want to consider renting a trailer.

 

[bouncycat]

It's tough but doable. I have pain in my shoulders and hips, and do the parks all the time. If we're just gonna be at the park for a couple hours, I'll walk, if not, I'll chair it. I have a manual chair, and DH is in shape, and it's hard for him to push me, so if you have shoulder issues, definedly get an electric one. I keep my pills on me at all time, and have learned control while I'm on them, even tho they are narcotic. Just do what you need to do, and go slow at your own pace.

 

[Bete]

goes over 100 pounds. An individual piece (the battery has a handle) taken apart can go around 35 pounds. The base of the unit is awkward to get in and out of the trunk. You have to recharge the battery every night. If you can manage with your good arm you can on some models just bring the battery in your room for charging. There are luggage type dollies that can assist with this if you buy one.

If you stay on site and use the Disney transportation for the parks you don't have to dissassemble the scooter. The scooter goes into your room at night for charging as a whole unit.

Get some practice locally with scootering in your local stores where they have them for store use.

You can go to some medical supply stores and see how a travel scooter works. They will allow you to place a demo model in your trunk and they will show you how to dissemble it, too.

Finally, it costs more but you can rent scooters in the parks; so, it won't be necessary to take it in and out of the car and you won't have to worry about charging it. The scooters are first come; first serve at the parks. You can be put on a waiting list if there are none available. The best idea is to go early to the parks; so, you can make sure you get one. You do this at the stroller rental locations. Honestly, I think this may be your best bet.

If you have a handicap sticker bring it; so, you can get close up parking. It's still a bit of a walk to get into the park from the parking area. Some parks are better than others in this regard. There are trams that take you if you are not in handicap parking.

 

[camlgt]

Thank you everyone for your advice. You have all given me a lot to think about, and I now realize that I have left another critical thing out of the mix as well. That would be my 5 year old son. I think the best course will be to take it slow and see how it goes. We have 8 days there and only plan on Disney(no univ etc.) so we have the time to take it leisurley and still cover everything. As mentioned above I never leave home with out my pills either. One of my biggest things is I actually need to take my meds instead of suffering. When I started the whole pain management thing if I had x amount of pills for a given day, it was a rare day that I didn't take that amount. Then sometime over a year ago I got in the routine where I don't take them all and can't honestly remember the last time I took my daily allotment. Needless to say I have built up a huge nest egg of pills. My wife takes the same stuff so I have plenty if either of us need an extra here or there. It's going to be a learning experience for the both of us since this is the first time we are going on a major trip with the child and our pain issues.

Also I enjoyed the energy thing, it was the first time I had read anything like that and see how it can happen. For me there is no doubt that I get myself in a cycle where I sleep 3 hours one day because I don't sleep because of the pain, then the next day I finally just die of exhaustion and sleep 12 plus hours. It makes sense and have never thought of this way.

Thanks
Camlgt

 

[bouncycat]

When are you coming down this way? What I do for longer trips, is take my WC with me....it's usually ALWAYS in the back of my car, so if I need it, it's there. For me, water works wonders, and I walk the first part of the day, when I had enough, I go back to the room, swim, and then get chaired, so I'm not out of energy for the next day. We're going with our niece and her family, and our nephew. They didn't know about my issues, so I had to tell them, don't be surprised to see a wheelchair, of course that raised a lot of flags and such, and I told them what I got. The niece searched it, and came back with the whole "how are you still walking" argument, and I basically told her I'm stubborn, and don't want to give that up, but I can't do it all day for 5 days straight LOL so half a day each day is perfect!

 

[katrina1122]

I have Fibromyalagia, so I'm all too familiar with pain. Last trip to WDW I walked it, and hurt all the time.

2 years ago I had ankle reconstruction surgery and I'm still recovering. Now I use a scooter for grocery shopping, etc when it's hurting. We've also done 2 conventions and I rented one for that.

I'd reccomend renting a scooter or power wheel chair. You can always leave in your room if she's feeling good, but it's not worth it to risk not having one.

 

[Singledad]

since there is two of you, i think one ECV would be doable. one rides (most likely your wife) and one walks with your son, or pushes the stroller if you are bringing one. if a stroller doesn't work with your pain, I would say that might be a good thing as your son would help force you both to take it slow and easy, at his pace.

and don't feel bad about leaving the park after just a few hours for rest time at your hotel. you can always go back again in the evening.

Please be careful about that nest egg you have saved. make sure to ask your doctor(s) what is the maximum safe amount you can take a day. Make sure they know you are going to Disney, and will be doing much more than normal. Pain management medications can be deadly. I know, my sister nearly died because of taking them AS PRESCRIBED. So to add anything above prescription is a scary thought to me.

 

[KPeveler]

Also to note that pain pills DO expire and can become more or less effective, or just plain make you sick. Some pills I have had have a shelf life of a year or longer, some no more than a few weeks!

Also, if you starting taking more than you usually do (which I completely understand, I also have chronic pain problems and I have meds for "break through" pain in addition to every day meds), be sure to test it at home one day first (taking the amount prescribed i mean). You really don't want to find out that it makes you sick or dizzy or too sleepy to have fun!

 

[bouncycat]

Also to note that pain pills DO expire and can become more or less effective, or just plain make you sick. Some pills I have had have a shelf life of a year or longer, some no more than a few weeks!

Also, if you starting taking more than you usually do (which I completely understand, I also have chronic pain problems and I have meds for "break through" pain in addition to every day meds), be sure to test it at home one day first (taking the amount prescribed i mean). You really don't want to find out that it makes you sick or dizzy or too sleepy to have fun!

I TOTALLY agree with this!! I always do this when the dr changes my meds! I just got mine changed from the Hydrocodone with acetamenaphen, to the Hydrocodone with Ibuprofen, and it's a HUGE difference! Much better on my tummy, but I feel the hydrocodone more, so it's nice to know that before you're at the parks!! LOL

 

[pbrim]

Another thing to remember is to make use of the First Aid stations as needed. I went with a friend who suffers from chronic migraines. A couple of times when the pain got the better of her, she went to an aid station where she was able to take her meds and lay down in a dark room for half an hour until they kicked in, while I went and did other stuff. It saved an hour easy having to go back to the hotel.