Fibromyalgia - and using an ECM

[rsvp_mm]

Hi everyone...I have fibromyalgia and osteoarthritis and am in my early 50's. The last few times we went to DW, I found it extremely hard to walk so much, having to stop every couple hundred feet. My husband and kids were continually telling me to keep up with them. Most of the time they would leave me behind, which made me feel pretty depressed, and I know I am keeping them from having a good time. After a day of walking (hobbling) around one of the parks, I can hardly bear the pain, and don't want to even get out of bed the next morning. I am totally exhausted and in so much pain. As you can imagine, this ruins my vacation. We are planning another Disneyworld vacation this winter, and as much as I love Disney, I dread the walking. This time I am actually considering renting an ECV, (I don't use one at home) but I am so conflicted about doing so. Does anyone else with FM rent an ECV to get around the parks? Any other suggestions from FM sufferers out there? Is it worth the money to rent one? Thanks for your comments, and letting me vent a little bit...

 

[KPeveler]

lots of people here with fibro rent an ECV! you'll be hearing from a lot of them very soon, I am sure.

I am 23 and while i dont have fibro, i have several other chronic conditions that sometimes behave the same way. I use a cane at home, but I use a manual wheelchair (an ultra-light one, not a rental) at the parks. I would absolutely suggest renting an ECV!! check out the FAQs to get some good companies. definitely rent from off-site because they are cheaper and easier to maneuver than disney scooters - plus you will have it for places other than the parks.

I had a very hard time using my wheelchair at first, but after my 2006 trip to disney, where I was miserable and in pain, I decided last xmas to try it. I had my best trip EVER to disney (it was #7, and the shortest too)... I was not in pain and i could see and do everything that my family could!!!

You will be hearing from several others soon who I am sure will second my comments, especially OneLittleSpark!

rent an ECV and have a great time!

 

[Cheshire Figment]

Hi and to disABILITIES!

Please ask yourself the following questions. Here are the suggested answers to go with them.

1. Are you disabled (even temporarily)? Yes.

2. Do the people you are traveling with, such as your family, know you are disabled? Yes.

3. Do you expect to meet anyone you know during this trip who may not know you are disabled. Probably No!

4. Do you expect to meet a bunch of people who you will probably never meet again in your life? Probably yes!

5. Is there any reason at all that you should care what these people think about you? Absolutely No!!

6. Will using a wheelchair or ECV make for a better vacation for you and your family? Absolutely YES!

 

[ireland_nicole]

I have Fibro (and some undiagnoseable auto-immune condition, apparently...) but anyway, not only have I rented an ECV at WDW; I now own one so that I can keep up with my kids on other family outings, esp. when I'm in a flare Anyway, it has been totally life changing to be able to participate in activities w/o constantly having to guage how many steps, or crying when nobody's looking b/c it hurts so much. Be proud of yourself for being willing to do what's necessary and make accomodations to live the life that's best for you and your family

 

[LovePug]

Absolutely rent one (and from offsite)! It'll make such a huge difference in your and your family's experience and it will be for the better. Absoultely no doubt...

My spouse has Fibro and would never be able to do the parks without one. On our first trip, we used a w/c. HA! I learned from that trip that that is a whole lot of work and it gave my spouse no independence whatsoever. On the next few trips, we rented a scooter. Then I found a great deal on one to buy and did the math that it would pay for itself in about 2 trips, so I bought one (it's a smaller one) that we bring along every trip. Best money I ever spent. Now we're the ones trying to keep up!

 

[hematite153]

Rent an ecv offsite!

I also have fibro, but, you'll see me at wdw pushing my DW in a w/c. You see, my own personal incarnation of fibro is best held in check with heavy physical exercise. Unfortunately, it is best with a full day off between days of heavy exercise, which is tough for disney. So, we've learned to either do parks every other day, or, plan a lighter (mainly morning) schedule. The lighter schedule combined with the workout of pushing keeps things under control, but, alternating commando days (inc. heavy pushing workout) with resort days works best for me.

That said, my DW uses a w/c at disney because of a genetic condition that is completely controllable at home, but, not at wdw where there is an assumption that one can walk to and from buses and around the park all day. When her father came with us last year we talked him into an ecv and he marveled at the freedom he had compared to previous vacations where he'd had to plan everything around his ability to walk.

In other words, the ecv is worth it not just for your family, but, also for you.

 

[Talking Hands]

I have my own power wheelchair so I can keep up with family when we are out. I couldn't do Disney without it.

 

[KarlaG4Kids]

Can you take your scooter on an airplane? My DH may have a torn muscle or ligament in his leg (he is having an MRI today). We are taking our 2 granddaughters to WDW in just 2 weeks. My friend has a scooter that we can borrow for our trip if we can take it on the planes with us. Has anyone had experience with this? If you can take it, do they take decent care of it? Thanks so much for your help.

 

[DisneyMim]

I have fibro and have not needed to use a scooter or such at WDW yet, BUT I would not hesitate for an instant if I get to the point of needing one. As of now I can walk pretty amazing (to me!) distances as long as I take breaks. I find one problem I am having is when my husband parks the car at a WDW parking lot and I have to walk what seems like miles just to get to the entrance or tram. I am exhaused before I even enter the park!! I am considering having him let me off and then parking. I don't even know if this could be done, but maybe it's something you can think of doing. As another fibro sufferer I know how depressing it can be, so I am encouraging you to rent a wheelchair if you need it. You don't want to miss out on time with your family. I would use a cane, wheelchair of anything else I have to to be able to spend time with my family.

Good Luck, ENJOY and it's good to hear about other fibro people, makes me feel a little less alone.

 

[hematite153]

I find one problem I am having is when my husband parks the car at a WDW parking lot and I have to walk what seems like miles just to get to the entrance or tram. I am exhaused before I even enter the park!!

This is what my DFIL mostly used his ecv for. He would use the ecv to get from the resort to the park and for the walks between lands. Then, he'd park it and walk around the various attractions in reasonable proximity to each other. You'd be amazed how much walking that can be. He said many, many times how glad he was to not be wasting his walking on buses, parking lots and entries.

 

[disneymarie]

I would check on the airline and see what the protocol is, I think it is something with the batteries. Also, He may want to consider just renting off site at some of the excellant venders as if you have a flat tire or break down, they can replace it swiftly.

I also ECV to get to the parks and then walk or use the cane to get to near by attractions,
But I also found that other family members now need the scooter when I travel with them,
I am 50+ and have CFS, Fybro, osteoarthritis, and several herniations.

This is what I like to use as I can, for all outings.

I bought it on Amazon,com two years ago and use it alot! I can sit, walk and sit in lines, even give a tired child a lift.

I paid $13o, but last year saw one at SAM club online for almost half that.
It is from Duramed and a rollator

I removed the plastic tray on the seat, the airline lost the basket, but I bought a jolly jumper beverage accessory holder off Amazon, and a wheel chair tote bag for over the handles and it doe not feel so geriatric///meaning it has heavy duty wheels, I can move over curbs, there are hand brakes, folds easily. Best of all I can pretty much keep up. I remember one night at Epcot needing to roll out my 34 yr son, from his back spasms when he refused to rent the ECV another day.

$13.99 free shipping

EBay I found this.

http://bagbuddycart.com/specifications.htm
$39.00 FREE SHIPPING

These items are very versital. I have an umbroller type shopping push cart and attach when we are at shopping days.


Di

 

[mechurchlady]

Can you take your scooter on an airplane? My DH may have a torn muscle or ligament in his leg (he is having an MRI today). We are taking our 2 granddaughters to WDW in just 2 weeks. My friend has a scooter that we can borrow for our trip if we can take it on the planes with us. Has anyone had experience with this? If you can take it, do they take decent care of it? Thanks so much for your help.

You can take it on the plane. Take anything with you on the plane that might get lost like the basket. Either you check in with luggage at the beginning and use their wheelchair or they let you go all the way to the boarding gate. With scooters you would have to turn it in and use their wheel chair to get around the airport while waiting to board. ECVs and scooters cannot go up to the side of the plane like a powerchair or wheelchair. It can be a long down hill trip just from where they board and the side of the plane. They have aisle chairs to get you to your seat. Disabled people usually board first. Check with www.seatguru.com to see what your plane's configuration is. On my last flight people did not know that they had a roomier seat but no seat in front of them meant they had to stow purses, laptops and everything in the bins. ARGH.

I suggest you talk to your airline and definitely take the scooter. Read the manual to see what is what also.

 

[SueM in MN]

I find one problem I am having is when my husband parks the car at a WDW parking lot and I have to walk what seems like miles just to get to the entrance or tram. I am exhaused before I even enter the park!! I am considering having him let me off and then parking. I don't even know if this could be done, but maybe it's something you can think of doing.

It can be done. Ask at the booth where you first enter the parking lot and then, if you see any other CMs along your way, just tell them you are being dropped off. There is a drop off point for each park, although you should be aware that the drop off for MK is at the TTC, where you will need to take a monorail (up a steep ramp) or a boat (a longer distance to walk).

This is what my DFIL mostly used his ecv for. He would use the ecv to get from the resort to the park and for the walks between lands. Then, he'd park it and walk around the various attractions in reasonable proximity to each other. You'd be amazed how much walking that can be. He said many, many times how glad he was to not be wasting his walking on buses, parking lots and entries.

That helps a lot and was what my FIL did quite often.

I would check on the airline and see what the protocol is, I think it is something with the batteries. Also, He may want to consider just renting off site at some of the excellant venders as if you have a flat tire or break down, they can replace it swiftly.

There is information in post #2 of the disABILITIES FAQs thread about renting ECVs and wheelchairs.

I paid $13o, but last year saw one at SAM club online for almost half that.
It is from Duramed and a rollator

I have also seen them in our local SAM's Club.

I removed the plastic tray on the seat, the airline lost the basket, but I bought a jolly jumper beverage accessory holder off Amazon, and a wheel chair tote bag for over the handles and it doe not feel so geriatric///meaning it has heavy duty wheels, I can move over curbs, there are hand brakes, folds easily. Best of all I can pretty much keep up.

This company sells some really nice cup holders. They come with several ways to attach it. We have a velcro strap with some plastic pieces that keep the cup upright. You can put a water bottle or many different sizes of cups in the holder. The part I like best is that the velcro makes it easy to remove and take on the plane with you.

You can take it on the plane. Take anything with you on the plane that might get lost like the basket. Either you check in with luggage at the beginning and use their wheelchair or they let you go all the way to the boarding gate. With scooters you would have to turn it in and use their wheel chair to get around the airport while waiting to board. ECVs and scooters cannot go up to the side of the plane like a powerchair or wheelchair. It can be a long down hill trip just from where they board and the side of the plane. They have aisle chairs to get you to your seat. Disabled people usually board first. Check with www.seatguru.com to see what your plane's configuration is. On my last flight people did not know that they had a roomier seat but no seat in front of them meant they had to stow purses, laptops and everything in the bins. ARGH.

I suggest you talk to your airline and definitely take the scooter. Read the manual to see what is what also.

In the disABILITIES FAQs thread, there are some links to information about air travel that might be helpful. When you look at your airline's website, some make it easy to find their information about travel with wheelchairs and mobility devices. On other websites, it's more of a challenge. On most sites, the easiest way to find it is just to do a search of the site for 'wheelchair'. Airlines are not allowed to charge for mobility devices and it can't count against your baggage allowance.

If the airplane has a closet that your rollator can fit into, you would be able to collapse it and then bring it right on board (as long as no one else asked to bring a mobility device before you did). Otherwise, ask about gate checking when you first get to the gate - not at boarding, it's too busy then and the gate check tag might be marked incorrectly.
We take everything that can be removed off of DD's wheelchair and I would suggest you do the same with the rollator. I carry a cloth laundry bag that I drop the smaller wheelchair pieces into as I remove them from the wheelchair. That helps so I know I didn't leave any pieces on the floor at the gate. I take the bag into the plane and put it in the overhead bin.

 

[Haley Whippet]

I also have Fibro, CFS & am in pain 90% of the time.I Always use a ECV at WDW. There is no way I can walk it. I own my own ECV & bring it when we drive, But do rent one from a off-site place when we fly.
You will enjoy your trip much more with a ECV. It has made all the difference between a wonderful vacation & a painful one..
Deb

 

[arminnie]

This time I am actually considering renting an ECV, (I don't use one at home) but I am so conflicted about doing so.

Please believe me - there is absolutely NOTHING for you to feel conflicted about.

You really NEED an ECV - it does not even sound borderline to me.

I rented one a couple of years ago (was in my 50s) - it was the BEST decision I ever made. I cannot begin to tell you how much it will improve your vacation for you and your family members.

I realize that it is an extra expense, but believe me it is worth it.