Tuesday, October 8, 2013

New Disney Disability Pass




CassyWithoutMS and I at the Magic Kingdom in 2012

Before I start talking about Disney's changes to their Disability Pass (DAS) I want to give a little background about my two most recent trips to Disney World.

Let's start in 2006.

For Christmas, my family took a trip to Disney World. This was a terrible idea. Christmas is the busiest time of the year for that park (which is already pretty busy.) I've never seen that many people crowded in to one place since seeing photos of Woodstock - the good one in 1969, not those crappy remakes. It was an absolute, chaotic mess.

The Magic Kingdom - 2006

This was already bad news because both my mother and my brother have Social Anxiety so they were a little on edge every time we entered a park. As you can see by the photo, there are a lot of jeans and sweatshirts. The temperatures in the park were in the upper 60s to low 70s that week, which must feel cold to some people. Coming from Maine, seeing the thermometer hit 50 in December calls for a trip to the beach.

Whenever my Mother books a vacation, she likes to play the game of "how much money can I save?" so we always rent a car, rent some one's house or condo in a neighboring town, cook our own food, etc. rather than staying on the resort and enjoying the wonderful food Walt Disney World has to offer. I never had to pay for anything either way, so I really am in no position to complain.

The real reason I'm bringing this up at all is this: Down Time.

When you are with your entire family and aren't paying for anything yourself, you're at the mercy of Mom and Dad's schedule. We would wake up early - like 7am - have breakfast at the rental house, jump in the rental car, park in the parking lot as early as possible, get to the park, push through the sea of people, and ride as many rides as possible.

We would stay in the parks until close every night. We would walk miles through each park every day and not have a single moment to sit down and take a break in fear that the 3-hour wait in line might go up to 4 hours if we delay and then, we might not get to ride everything we want.

We were at 100% all day, every day.

At close, we would file out of the park, get back in our rental car, wait in traffic to leave, get back to our rental house, and go to sleep in our rental beds around midnight only to wake up 7 hours later to start the process over.

The one moment of Zen I got that week.
Disney's Grand Floridian Resort at Sunset.

Half way through the week, I started to feel like crap. My whole body hurt, I had terrible headaches, my vision was getting blurry. My Parents told me essentially to stop being such a whiner. Everyone was tired but I was the only one complaining. Every day at the park, I felt worse and worse. All I wanted to do all day was go home and sleep. As we finished our week at the resort on Jan 1, 2007, I felt exhausted, frustrated, tingly, and sore. But that's how everyone else felt too, right? So I didn't say anything.

4 Months Later, I was diagnosed with Multiple Sclerosis.

To my Parents' credit, they apologized endlessly for the way they reacted to me at the parks. Hindsight is always 20/20.

Flash forward to 2012.

This time, I'm paying for everything myself. I decided I want to stay on resort and get the dining plan. The idea of paying for everything ahead of time and knowing there was no more money to be spent during our vacation has always appealed to me. What if we bring $500 for food but we run out? I would rather know that everything is all set when we get there.

CassyWithoutMS is a teacher so we can only go on vacations during school breaks... the same time everyone else in the world is on vacation. Again, the parks were busy, the lines were long, things were chaotic. Not as bad as Christmas time, but certainly as one would expect Disney World to be during school break.

The first park we went to was Disney's Hollywood Studios (Formerly MGM Studios). This time, I came prepared. I brought my Copaxone Prescription, a letter from my neurologist explaining my MS, and I had rehearsed exactly the explanation and information I would share to make sure I didn't repeat the terrible experience I had in 2006. This was going to be the best vacation ever.

We went to Guest Relations and I said "Hi. I was told to come see you. I have Multiple Sclerosis..." and before I could say another word, before I could take out my prescription, before I could unfold the letter that my Neurologist so nicely wrote for me, the cast member said "No problem! How many people are in your party?"

She asked me some questions about the length of my stay and gave me one of these puppies:

The previous Disney Disability Pass.
This isn't mine, I pulled this JPG off the web.

She instructed us to show it to the first Cast Member we saw at every ride and they would tell us what to do. Being at Hollywood Studios, clearly our first ride was Rockin' Roller Coaster. We made our way over to the queue which had a 2 hour wait. We showed the pass to the young man at the end of the line and he directed us up the FastPass queue.

Wait... what?

We only have to wait 20 minutes to get on a ride with a 2 hour wait time?

We walked up the FasPpass queue and felt a little bit guilty walking by everyone who had been waiting. Was I given the right pass? I didn't feel like I deserved this kind of treatment.

We used the pass to get on every ride in the park and had ridden everything we wanted to ride by 3:00pm. That was it. We finished the park. Aside from Fantasmic which we were going to return later in the week to see anyway... I was starting to feel a bit hungry and sleepy so we decided to leave the Disney Park take the Disney Bus back to our Disney Hotel and enjoy a Disney Lunch next to the Disney Pool. After lunch and a quick cool-down dip in the pool, we went back to our Disney Bed and took a 2 hour nap before heading to EPCOT where we had dinner reservations.

We had some time to burn before our table would be ready at Disney's Coral Reef Restaurant so we decided to check out the 2nd biggest aquarium in the country which just so happens to be located at EPCOT. They built a very nice Finding Nemo themed ride through the aquarium which gives guests a great view of everything. We went to get on the ride and saw that this particular attraction didn't have a FastPass queue. The ride only had a 20 minute way so I said to Cassy, "This ride doesn't have a FastPass line." I was  putting the disability pass back in my pocket when a Cast Member saw me. "That's not a FastPass," He said. "That's an 'alternate entrance' pass." He pointed us around the back side of the building where we found ourselves at the exit of the ride. We showed the Cast Member there the pass and he stopped the queue of people waiting to get on and let us on the ride and then let the queue in behind us.

Again, we felt like we were getting treatment we didn't deserve.

We used the pass throughout the week, cutting in front of people who were waiting in line and feeling a little bit guilty about it every time. We would ride every ride in the park at our leisure. We would sit down, have an ice cream, look through the gift shops. I saw parts of Disney I had never seen before because we weren't so rushed to find the next line. We would do everything we wanted to do at a park by early afternoon and then, as we did our first day, take the Disney Bus back to our Disney Hotel and take a Disney Nap in our Disney Bed before venturing back in to the park that night.

we even took the time to take pictures with every character we could find,
knowing that line times weren't an issue.

At the end of the week, we were deciding which rides we wanted to ride for the second or third time rather than trying to cram in everything we had missed.

It really was the best trip to Disney World I have ever had.

On the flight back, I thought about the Disability Pass and whether or not I deserved it. And then it occurred to me: I didn't feel exhausted, I didn't lose vision, I didn't get the tingles, I didn't get headaches. I felt amazing. Being able to slow our pace, take our time, take naps every day, cool off in the pool, and just sit down for a little while kept my MS from getting the best of me.

To everyone else in the park, I may have looked like a young, able-bodied douche bag taking advantage of the Disability Pass... but at that moment, I realized: I wasn't taking advantage of anyone. I was using the pass for it's exact purpose. It kept my disease from ruining my vacation. Without the pass, the end of our trip would have been spent at the hotel or, possibly, the Emergency Room because the fatigue from standing in 3 hour lines and rushing to the next one without a chance to stop would have sent my MS over the top.

So now, Disney World is changing their Disability Pass. A report came out exposing how guests without disabilities were taking advantage of these accommodations. Remember how I said I wasn't able to show the Cast Member my letter, my prescription, or tell my story? Due to HIPAA regulations, the park can't ask for details or proof of medical conditions. They have to take the guest at their word. And, what was happening was, people without disabilities were getting the passes to use as their own, personal, unlimited FastPass.

I've read every press release I can get my hands on about this new pass and here's what I've concluded.

The pass no longer admits people to the FastPass Queue. When getting to a ride, the Cast Member will tell you when to come back based on the current wait time. So, if a ride currently has a 2 hour wait, he or she will tell you to return in 2 hours for admission to the ride. This way, there is no advantage to getting the pass vs. waiting in line, it just allows people with disabilities to bypass the actual queue line. This way, people who don't have a disability won't benefit from lying about it. However, in my case, I will lose the slow paced, relaxing, nap time vacation that I had which allowed my to keep control over my disease.

However, every release said the same thing. They all said something along the lines of "Of course, if this accommodation doesn't fit your specific needs, we will do our best to help you on an individual basis."


Ok. Perfect. So if I don't really have a disability, the disability pass won't help me. But if I can provide specific proof of my needs, they can alter their accommodations to suit me.

Disability Access is more than just avoiding getting a wheelchair through a queue line, it's helping people whose bodies don't behave properly enjoy life as much as those who do without running the risk of medical repercussions.

Next time I go back, I will show my letter, show my prescription, tell my story and everything should work the same as it did last time, right?

Let's hope so. I don't want a repeat of 2006. That was terrible.

CassyWithoutMS and I plan to visit the parks again soon and I will let you all know how it worked out. If they can't accommodate me in the way I need, Disney might be off the Vacation List forever.

Thanks for reading.

If you have any experience with the new Disability Pass, please post a comment! I'm eager to hear how Disney deals with actual people with actual disabilities while using their new system to deter fraud. 

NickWithMS



Wednesday, August 7, 2013

Argument



...got in an argument with my mom yesterday. I felt like shit afterword and have felt like shit all day. I have such a bad headache. I couldn't sleep last night. I had no coordination in my hands this morning, I was almost unable to work... as I think back... all of my relapses have been caused by stress in my family... I know there are connections between stress and MS... it just seems odd... 

why family specifically with me?

NickwithMs

Tuesday, July 30, 2013

Six Flags Great Adventure




My Bachelor Party weekend was a great success... Friday evening, we drove down to New Jersey in the Nana Van.


yeah. we's got swagger



The trip was scheduled to take around 6 hours. We were able to make it in just under 8. We're overachievers.

Friend Kevin was able to use his frequent traveler points to book us our hotel rooms fo' free.
We purchased our park passes 3 days in advance which was a huge cost savings and we used my mother's Mobile Speedpass to cover our gas so, in all, this was a very cheap weekend.

Mike brought a bunch of snacks for the drive down, some of which were Gluten Free which was important because both Rob and I require it.


When we checked in to our hotel, they had two rooms ready for us which seemed perfect for 5 travelers. That is, of course, until we opened the doors to our rooms and saw that each room had one (1), singular, solo, Queen Size bed in it.

5 Guys; 2 Beds.

This sounds like the name of a gay porn, doesn't it?

Luckily, Kevin brought his air mattress so Rob slept on that while Kevin and Mike spooned in the bed in one room. Adam slept on the floor and I slept on the bed in the other. 

I suppose it wasn't so bad.

Saturday, we went to the park!



6 Flags Great Adventure was amazing! There were so many roller coasters and a couple of them were even record-holders! The biggest event was, of course, Kingda Ka - The tallest roller coaster in the world.



I'll get to that in a minute...

The first thing we did upon entering the park is we immediately headed to Guest Relations to inquire about their "Equality Pass" which is designed to help guests with disabilities avoid maneuvering through queue lines. The system works similar to Disney's "Fast Pass" with a few minor differences.

  • The pass is good for 4 people (Yourself plus 3 others)
There were 5 of us in total but Rob is a disabled veteran so he was able to get his own pass.
  • The pass isn't designed to save you any time. It is purely designed to allow you to skip the physical queue.
When you get to a ride, the attendant will check the current wait time and write down a return time on your pass. I.E. if the current wait for a ride is 40 minutes and you show up at 3:00pm, the attendant will write down 3:40 on your pass and you can show up to ride at that time.

This is the way it is designed to work. Our experience, however, was a little different. Largely due to the weather forecast being "Severe Rain" up until that morning, the park was pretty empty so wait times were around 20 minutes for everything. 

yeah. the park was pretty empty

The only ride to really have a significant wait was the Safari (which is quite good and I highly recommend checking out if you're ever in the area!)

I would have honestly preferred the rain to the intense heat we ended up getting! Holy shit was it hot that day!

98 degrees and near 100% humidity


With the wait times being so low, we only had to wait about 10 minutes to get on any ride with our passes...

Be forewarned: the pass is not good for Kingda Ka because their queues are ADA Accessible. Luckily, we only waited about 30 minutes to get on that one.

All in all, the pass is designed more for people with wheelchairs than for those with MS. It was helpful to be able to escape to an air conditioned building and have a cup of water while we waited for our rides rather than being out in the sunlight. I must say, since the passes didn't cover Kingda Ka, if the wait had been over an hour like it normally is, we probably wouldn't have been able to ride it. My vision was getting blurry and my feet were getting tingly by the end of the day. If we weren't able to escape to cooler climates while "waiting" for our rides, things could have gotten much worse.

All-in-all, a great park with great accommodations for people with disabilities. Knowing what I know now, on a busier day, I might mention that - ADA Approved or not - People with MS should be able to bypass the queue line for rides which normally aren't included on the Equality Pass.

Hope this helped answer your questions!
Nick

Thursday, June 27, 2013

Big Weekend




Getting ready for an exiting weekend ahead!

Tomorrow afternoon at 4:00, my brother, Adam, along with my best friends, Mike, Kevin, and Rob, and I will be packing in to my mother's Toyota Sienna (with license plate "NANA CAR") and will be taking a road trip to Jackson, NJ to celebrate my last weeks as an ineligible bachelor at Six Flags Great Adventure.

I've never been much of a "go out and get wasted" kinda guy... but I have always been a "I want to ride the tallest roller coaster in the world" kinda guy... so we are going to do just that. For those of you who don't know, Six Flags Great Adventure is home of the record-breaking coaster "Kingda Ka." At an intimidating height of 456 feet and top speed of 128mph, Kingda Ka holds both height and speed records as being the tallest in the world and fastest in North America (2nd fastest in the world) according to www.rcdb.com.

Is it bad that I'm turned on by this photo?

Not only is this trip going to test the limits of my courage, but with a forecasted highs in the mid 80s and high humidity, it's going to put my MS to the test as well. Normally, I can escape to the Air Conditioned luxury of my apartment or office on hot days but, this weekend, we will be exposed to the elements all day. We will be walking miles around the park and standing in line for hours.

Six Flags does offer a disability pass designed to help guests with certain concerns and needs. I've been instructed to go to Guest Services when I arrive to discuss my MS with their staff and see how they can accommodate me and my friends.

I will blog about how well this works when I get back.

SO FREAKIN EXCITED!

Nick

Tuesday, June 25, 2013

Summer Time!




Good morning. Today is a beautiful, sunny day here in Maine. It's about 83 degrees, low humidity; it certainly is beautiful in all the ways most people would expect.

Last week, I had my annual MRI up the coast in Brunswick, Maine. My mom went with me this time. I always like to bring someone else to do the remembering for me since I never quite know what was said to me at these meetings after about 20 minutes. Also, The MRI was an hour from my house and scheduled at 8am. Having worked till 2am, that didn't leave me much time for sleep so driving up alone didn't seem like a good idea.

2 hours.

That's how long it took to get all the scans of my brain and spinal chord - both with and without contrast dye. 

"Hey, you, kid with ADHD. Yeah. I need you to lay perfectly still without falling asleep for 2 hours."

God, I hate MRIs.

After the MRI was complete, my mother and I headed over to Lowes to burn time before the meeting with my Neurologist to look over the images.

We bought a white mailbox for our wedding in which people can place cards. My mom is going to have Mr. & Mrs. Salve printed on the sides. It's a cute idea. I like it.

Anyway, we went back to the Neurology offices and met with my Doctor. She looked over all the slides and images and saw that there is no new areas of inflammation as compared to my last MRI. For those of you who aren't quite keeping up, that's what we call "good news." It means my MS is back in remission.

Huzzah!

Oh, and about the wedding, since I brought it up... 
Cassy and I are getting married in 3 weeks! We're so excited. Most of the planning is done, now we're just playing the waiting game.

That's all, people
<3
NickWithMS

Monday, May 6, 2013

Stir Fry



--> So i made an awesome stir fry today and Decided I'd share the recipe.


Prep time 2 hours.
Cook time 15-20 minutes

Ingredients:
1.5(ish)lbs stew beef
2 x 8oz cans Pineapple chunks
3/4 cup soy sauce
1 tsp Ground ginger
4 Bell peppers
1 vidallia  onion
1 jalapenos
2 bunches Scallions (green onions)
2 tbs minced garlic
Olive Oil


First, open your cans of Pineapple chunks and drain the juice in to a measuring cup (it should be about 3/4 cup but take note of how much you get)

Pour the juice in to a large tupperware (or, Glad or Ziplock, or any other container.) make sure it's big enough to hold all the meat.

Measure out the same amount of soy sauce as you had pineapple juice and pour that in with the pineapple juice.

Add 1tsp ground ginger to the mix.

Add the steak and the pineapple chunks and shake to make sure all the beef is covered with sauce.

Throw that in your fridge. You're done with it for the next two hours.

Slice all 4 bell peppers in to strips. I like getting different color peppers because I like to share my food on Instagram and it looks better that way... #FirstWorldProblems

Throw those slices in a large bowl.

Peel the Onion and slice it in to wedges. I'm not gonna tell you what wedges are... you're an adult... you should be able to do that...

Throw those in with the Bell Peppers.

Chop the scallions in to .5ish inch pieces. (that's about 1cm for my metric friends)

Again, throw that in with the other veggies. Do you see a pattern emerging?

Slice the jalapeno in to rings and throw those in.

Cover the top with minced garlic and mix it up.

Cover that and throw it in your fridge as well... If you don't have room in your fridge, leave it on your counter... just make sure the cats don't get in to it..

Now find something to do for the next 2 hours...

Play xbox, go on a walk... drink some wine... I don't care... just let the meat sit in the pineapple juice for a while. Stew beef is shitty, tough meat... if you don't let it soak in the pineapple juice, you're gonna break your jaw trying to chew on it.

Ok, so... now that 2 (or more) hours have passed, heat up some olive oil in a large wok. If you don't have a wok, use a pasta pot or something... I don't know.... I have a wok so I don't have to worry about this kinda shit...

once the oil is heated up, throw in the veggies and then put the meat on top.

let that fry (and boil since there is a lot of water in the veggies) mixing throughout to keep everything heated until the meat is cooked to your liking. Should be about 15-20 minutes depending on how you like your beef cooked.

I cook mine rare so that it doesn't get overcooked when I reheat it the next day.

Now.. there is a lot of liquid with this... you can do a couple things...

you can serve it over Jasmine rice which is delicious... or, what I do is save the liquid and use it as a stock for my Beef Stew.

I don't care what you do with it... throw it down the sink for all I care... Just eat the stirfry and tell me what you think.

NickWithMS

Tuesday, April 23, 2013

What is MS?




What is MS?

This may be a hard one to follow... I'm having difficulty trying to explain my thoughts on this one... 

I was thinking about this today. Before I was diagnosed with MS, did I have MS? My friends don't have MS but, then again, neither did I until I lost feeling in my body and had an MRI to show that I had more than one lesion on my brain which literally translates to "Multiple Sclerosis."

Is the disease "MS" simply characterized as the visible evidence of my Immune System fighting my Nervous System? The name would imply yes, that in order to have MS, you have to show that evidence. What if there were a way to see that someones immune system were tuned to attack the myelin coating of their nerves before it ever caused the scarring and damage associated with MS? Would that person still be diagnosed with the disease or, as the name "Multiple Sclerosis" indicates, do we need to wait until the damage is done before a diagnosis can be placed?

The name of the disease is simply the aftermath of its destruction and has nothing to do with the problem. It would be like, instead of calling a war a war, we called it "Fallen Buildings" because that is what we see after it's run its course.

I'm sure my immune system was messed up long before I had any evidence of demyelination in my brain or spine. Did I have MS then even though I didn't physically have Multiple Sclerosis that a doctor could see? Right now, my systems are not attacking each other. This goes on for months - even years. It was probably in remission before it ever got active. There would be no evidence of it on any diagnostic imaging, but it was there: the defect in my body which gives my immune cells the wrong information.

So what is MS?

Is it someone's body's tendency to attack their own nervous system? Or is it the actual damage that has been caused by this tendency?

I hope this argument is being made by people much smarter than me.

NickWithMS