muddled brain (long) need advice

[meandtheguys]

Okay, I mean that literally. I have just been diagnosed with Chiari Malformation meaning my brain has herniated into my spinal column. I have to admit I have been in pain for years, but being a homeschooling mom have just had to ignore it. No more.

My quandries involve getting a scooter and/or a GAC pass at the park. My dear family is having a difficult time adjusting to my "really" having a problem. I worry about how both the boys and my DH will "handle" my being in the scooter. I can walk decently on flat ground (small amount of leg paralysis) with a good stride. However stutter-stepping such as shopping, walking in crowds, or standing in line causes terrible pain. I am embarrassed to admit to being prideful. I know that people will look at me see I am pooh-sized and assume that is my only "problem." Please don't flame me!

We have two weeks in the World so we won't have to rush, so I am not concerned about saving time in lines, but do the waiting areas have somewhere to sit down? I can't imagine being coordinated enough to drive a scooter through the main line area! I am certain I would run someone over or drive myself into one of those ropes!

Would a GAC allow me to just sit quietly and await my turn preferably out of the light? I am sorry if that is a dumb question! I just don't want to be the "weakest link" on this trip. I have been planning it with all my might for so long. I am a bit of a wreck myself! I am also both bummed and thrilled that I found this out before the trip. I would have ridden rides that could have done really serious damage, I gather.

I apologize for the length and confusion in this post. Does anyone have any word of wisdom for dealing with this with my family.

Michelle

 

[GeekChic]

First of all, a big hug for you! (((((((((((((Hug!!!)))))))))))))

I'm a disabled homeschooling mom too, and it's a challenge, but I love it. I tip my hat to you for continuing despite your health problems!

You said so many things that struck me, I hope that I can remember them all (MS brain over here!). Firstly, please don't avoid using an ECV because of pride. It's not worth it! Think of the ways it'll make the trip easier on you and your family, and then hang what the rest of the world thinks. Whatever size you are, you have a REAL disability and even if people can't see it, so what?! I used to ask people "Oh, so I should have to 'look' disabled too?!" (now that's not an issue though, cause they can tell I have challenges).

Very, very few waiting areas I've seen have benches to wait on. The "stutter walking" you talk about is the norm in the queues, and I would definitely recommend that you do all you can to avoid that.

You said:

I can't imagine being coordinated enough to drive a scooter through the main line area! I am certain I would run someone over or drive myself into one of those ropes!

This is a huge problem for me, and I can't use a scooter anymore. I have to rely on a manual chair, and my family pushes it for me.

I will be back shortly to add more to this, (phone call)...stay tuned and hang in there!

Ro

 

[meandtheguys]

Thank you so much! I just wanted to cry from the hug! Guess I needed one alot! I have never exposed myself so greatly in public, and had been nervous I might have offended someone!

I think my family's trip (and mine) will be so much better if I am scootering. They just have never seen me in that position before! To their credit, they are supportive to the extreme. Glad to hear I am not over-reacting to the driving in line idea. I feel so much better!

O.K....I am gushing. I was just REALLY nervous about posting this! I spent an hour this A.M. reading the whole forum to get a feeling of whether it was safe to expose myself!

Michelle

Doesn't your brain/body get muddled while trying to homeschool and run your home? Mine is a mess half the time!

 

[GeekChic]

Hi again Michelle!

I'm so glad you jumped in and posted, I'm new around here too but this forum with other challenged Disney fans is a place I feel right at home! Another hug for you ((((((((hugs)))))))))!!!

Okay, now that I'm back, let me add...kids are very adaptable. They will get used to you being on the scooter in no time (depending on their ages you have to be careful, one time my dd who was only 4 at the time reached out and touched the accelerator and I almost ran over an elderly lady!) they may also want to ride on the scooter, which you have to explain to them in advance is dangerous and not possible for them to do.

Before you know it, they will be wanting to pile their shopping bags on you (I joke about being the human shopping cart)!

Your husband too will adjust to seeing you in a scooter quickly, and I am sure he would want you to do whatever prevents you from feeling pain. Everyone will be more at ease, and relaxed, if you can scooter around and they don't have to worry that you're hurting.

I myself haven't ever had a GAC (which I plan to look into on this trip) but I've not needed it before, Cast members have always been so helpful and assisted in opening the handicapped entrance gates and all. They see me coming in the chair with my forearm crutch across my lap and they just do all they can to assist. I find this very helpful especially on rides with moving walkways like Buzz Lightyear, they took me around and I got on where people were exiting, therefore having more time to get into the ride vehicle. That made it much easier.

I find that some of the doorways, especially in the shops in the World Showcase are VERY hard to navigate in a scooter so be mindful of that when you go in there (I nearly got stuck in the shops in Canada and UK, in the UK I hit the door frame, there was nothing I could do!) If you're balanced enough to drive the scooter, then you should be able to manage okay. Just so you know, you can get on and off the monorails and most busses in your scooter too so if you rent one from an off-site rental company (often cheaper than the park rate anyway) you will have your scooter 24 hours a day and not have to stand waiting at monorail stations, etc (which I find exhausting).

If you have any specific questions let me know...hopefully I or somebody else around here will have answers and reassurance for you. Your family will adjust to your 'real' problem, just keep reinforcing that now that you know what is wrong, that you need to take good care of yourself so you can take good care of them, and this is part of that. In no time, no one will think twice about it.

Big hugs and have fun in WDW! 2 weeks...that's so wonderful! You should be able to see and do just about everything

Ro

p.s. Oh yeah, it's a challenge to run the house and homeschool...fortunately my husband is very supportive, and not allergic to housework! LOL

 

[meandtheguys]

balance...huh We'll see! I am going to go to Walmart and try one of those puppies out! I hope I have balance! It should be funny! I hope I don't have the video turn up on one of those T.V. programs!

I feel kind of bad that DH will have to be in charge of the stroller for the whole trip, but he is a trouper!

I cannot wait for this trip even with my misgivings. Thanks again,

Michelle

 

[Cheshire Figment]

Hi Michelle. Welcome to disABILITIES

Here are the urls and phone numbers of the companies that rent ECVs

Walker Mobility:
1-888-726-6837
www.walkermobility.com

Care Medical:
http://www.caremedicalequipment.com/

RANDY'S Mobility is in Kissimmee 407-892-4777
http://randysmobility.com/

Colonial Medical
http://www.colonialmed.com/about_cms.html

I have used Walker a few times. They will ask for a credit card and charge it the day before arrival. They will deliver the ECV to your hotel bell services before your arrival and pick it up there after your departure. Their rates, especially for longer than a week, are much better than Disney's. Also, their scooters are much better.

You don't say if you are renting a car or what. If you are using a car for getting around, the ECVs break down into five pieces, the heaviest about 39 pounds. They take about a minute or so to take apart and about two minutes (once you are used to it) to put it together.

Another suggestion is find out your state's requirements for a temporary disabled hang tag and get the paper work and have your doctor sign off on it. The tag will allow you to use any of the handicap parking areas (which will be a necessity). Also, with the policy of charging for valet parking, with a handicap hang tag the fees will be waived. Also the valets will usually volunteer to assist in loading/unloading an ECV. In Virginia I printed the required form from the DMV website. When I took the completed form to the DMV Office it took less than 15 minutes from the time I walked in until I had my tag.

If you have never used an ECV, you might want to go to a large grocery store near where you live. Most of them have ECVs to assist some shoppers. If you do, realize the rentals are MUCH smaller and easier to maneuver; also having three wheels instead of four. Also, where the ones in the stores only have one lever control, the rentals in addition to a lever control have a knob that goes from "turtle" to "rabbit" which controls the top speed of th ECV (with the lever at "maximum" position). Generally when I am in queues or in shops I have the control at "turtle", only turning it up when I am outside and in a hurry.

Remember also, that once you are in an ECV you will become invisible to "normal" people so you have to be more aware of your surroundings than under most circumstances. Warn your husband that if people have questions for you, he should NOT answer them if directed toward him but he should have them direct the questions to you.

Keep a good sense of humor. If you accidently bump or nudge someone and they take umbrage, smile at them and tell them "I just got my license and it was in a box of Cracker Jacks". Don't worry, you will find yourself handling the ECV very well in a short time.

Also, don't worry about what others will think. I have a couple of times told people I would be happy to switch bodies with them; they could then sit in the ECV while I could easily walk, hop, skip and jump. Remember is is a vacation for YOU and YOUR FAMILY; your being in an ECV will help all of you have a better vacation.

Oh, a couple of last things. One, very important, is do NOT allow any child to ride with you no matter what. They could accidently jam the drive lever and cause you to run hard into someone or something. The other, is you WILL become a human shopping bag. I think my record is when I had a camera, a cell phone, and a large pin bag in the basket; bags hanging from both sides of the handlebars, and a box or two sitting on the floorboards.

Anyway, try to have a good time.

Cheshire Figment (Mike)

 

[meandtheguys]

Thanks Mike! I have read all your ECV information and truly appreciated it as I was stepping towards this decision! As for being a human shopping bag, that's why I have DH pushing the double stroller! One side for DS and one for stuff! We do collect alot of it. I love the "cracker jack" line. It will be appropriate. I figure this trip will be a learning experience for all of us! I cannot wait, even with this interesting turn of events!

Michelle

 

[Earstou]

Michelle,
Greetings from a fellow Chiarian! I had my decompression surgery in March 02. I will gladly answer any questions about Chiari if I'm able.
Really can't help with WDW info, as I fared well when I went in May, only spent two of our eight days in a manual wheelchair. But next time I will insist we rent a ECV, so I can have a little more freedom!
The only limitation from my neurosurgeon is NO rollercoasters, but I find the simulator rides to be quite jarring. I handled Star Tours okay once, avoided Body Wars, and should have skipped Dinosaur! But this jarring might affect me because I've had the back of my first vertebrae removed (part of my surgery for ACM I).

I worry about how both the boys and my DH will "handle" my being in the scooter.

You've been in pain for years, so your family has been adjusting to your disability for quite some time, this will just be another adjustment. This was my first time in a wheelchair, and my kids did just fine, my DD was even "clearing" the path ahead by the end of the last day ("excuse me, can we get through please").

I can walk decently on flat ground

...and walk like a drunk on uneven ground if you are anything like me!! I had a hard time walking between the rows of seats in the shows, even ended up falling in the lap of someone who I tried to go past when she didn't "move to the end of the row".

shopping, walking in crowds, or standing in line causes terrible pain

My pain is much better since my surgery, I do have bad days mixed in with my good days, but before surgery, there were no good days. It can be hard to find a doctor really knowledgeable about Chiari, so make sure you do a lot of research on your own so you know if your doctor is knowledgeable. I was refused surgery by one NSG who knew very little about ACM, but pretended he did.
Good luck with the trip and everything else! If you need someone to talk to, I'd be happy to help!

 

[meandtheguys]

Thank you so much Earstou! I just found out on Friday, and have had a fear-filled weakend! I am trying to find knowledgeable neurologist, prob. at Cleveland Clinic. I have no idea about surgery, etc as my reg. GP had the sence to say he has only seen it once!

I think I will bypass all the bumpy rides just for my own sanity. I think that I will feel less likely that my head is going to explode or something.

I don't know why I am so nervous about talking to my DH about scooter. As soon as he read that a good recliner could help we went and bought one on Sat. He is such a good guy, and I guess that I am feeling like a burden. I know that we will adapt, just as we did to his diabetes.

Hadn't though about stepping on all those people who block the seat rows and you have to pass them! I guess they will get what they deserve!

Thank you again for posting.

Michelle

 

[SueM in MN]

Welcome to disABILITIES. It looks like you have already been properly welcomed, so I'm just adding my welcome on.
A great place for reputable health information on practically any subject is http://www.medhelp.org/. They have forums where people can ask questions and get advice from fellow people with the condition, but also each thread will get an answer from a qualified physician too. (The physician info is actually "staffed" by Dr.s from the Cleveland Clinic). You can also do a search and find what other people have asked/answered.

There are people who will judge your use of an ecv, but you know that for you it's not an Electric Convenience Vehicle (I don't know why the people who originally named them named them that), it's an Electric Necessity Vehicle.
As for your question about a GAC (Guest Assistance Card), most people who are using an ecv or a wheelchair don't need one. It's basically to let the CMs know what sorts of assistance you need if you have invisible disabilities. If you are using a wheelchair or ecv, they can see that you need an accessible entrance. If you have needs besides mobility, you may need a GAC, but for most people, just the accesible entrance works fine.
For many rides/attractions and all the shows, you will be able to bring a wheelchair or ecv in line and into the show with you (so you won't have to step over people who don't move down the row, unless you choose to not bring the scooter in with you).

Good luck on your trip, lots of {{{{hugs}}}} and pixie dust, and ask as many more questions as you like.

 

[Earstou]

Michelle, check out the World Arnold Chiari Malformation Association website at www.pressenter.com/~wacma . There is a list of doctors there, and a list of questions to ask your doctor. Their onsite info is great, plus the offsite info includes some good links with the most up to date info available. They also offer an online support group, which can be another resource for finding a doctor in your area.
My doctor is one of a handful of doctors currently studying this condition. He is Dr. John Oro whose website is at http://tribble.missouri.edu/ns/chiari/ (included in WACMA links).
The initial info I was given gave me no hope, so I was truly happy to find wacma and Dr. Oro, and that's why I say to find a knowledgeable doctor for this rare condition!

 

[Earstou]

The initial info I was given gave me no hope

Oops! I should have said no hope for a better life or for treatment. I did not mean to imply this is a fatal condition, because it's not!

 

[meandtheguys]

Thanks alot for the info, friends! I am feeling alot less freaked than I was on Sunday. My guys had all gone camping to give me a break, and I am a great one for perseverating! After the kiddos go down tonight I will look into the links you've mentioned. I really needed ideas and support this weekend and I must say that the DIS truly came through!

This is an awesome forum that I had looked to for information on several occasions, and even though I was nervous, I had seen alot of good feelings and info on it!

Thanks Sue for the official Welcome!

Michelle

 

[yoopermom]

I just wanted to add that if you're going at a busy time, you will really need to be alert to people around you, because they really will not *see* you. Just go slow, and don't get panicky. There are some tight spots, but just take your time, and don't be afraid to ask for help. I use one specifically because I can't stand the inline part, so I understand exactly where you're coming from.

One little hint: if you're one of the first few in the handicapped line at Festival of the Lion King, and the CM asks if you can transfer to a bench, say YES. I wasn't sure if I wanted to, but ended up in the front row, with my son just thrilled to be touched by the monkey men, etc.

Drive with pride, at least you're at WDW!
Terri

 

[SueM in MN]

Originally posted by yoopermom
One little hint: if you're one of the first few in the handicapped line at Festival of the Lion King, and the CM asks if you can transfer to a bench, say YES. I wasn't sure if I wanted to, but ended up in the front row, with my son just thrilled to be touched by the monkey men, etc.

Drive with pride, at least you're at WDW!
Terri

That's a good hint, Terry. There are relatively few actual wheelchair spots in the first row (mostly on the ends of the first few rows that are on the floor), but they have quite a few front row bench seats available if you are able to transfer out.

 

[SueM in MN]

I thought of some things I know I didn't mention and some I can't remember if I posted (and I don't even have an official reason for a muddled brain):
Anyway, here they are:

1) If you feel like you need a little rest, an alternative to going back to your resort is to go to First Aid. There is one in each park and they are staffed by very nice and thoughtul medical CMs. We have used First Aid when DD needed to lie down and stretch out, to lie down after she had a seizure and just to use their accessible companion bathroom. The area are dimly lit, quiet and have cots in individual cubicles.

2) Here's a link to the DIS page about touring with mobility disabilities. it includes a list of Mainstream lines (where the regular line is accessible to wheelchairs/ecvs. There is also a list of rides where you will need to transfer to a ride seat and those where you trade in the ecv at the ride entrance for a manual wheelchair.

3) And here's a link to a page on the official Disney website where you can download a copy of each park's Guidebook for Guests with Disabilities. They don't give a lot of info, but at least they are a starting point.

4) And here's a link to a thread about ride boarding

have a great trip.