Sunday, September 26, 2010

Disney Accessible Travel Continued

I just returned from a great trip to Orlando. As you may have read, I posted blog from my friend Monique on accessible travel at the Magic Kingdom and Disney's Animal Kingdom. Monique blogs about Pompe Disease (which is a form of Muscular Dystrophy) and gives tips to make other Pompe sufferers lives a little easier. During my cancer battle, I also had issues with accessibility, as I was partially confined to a wheel chair.

My time in a wheel chair (and as a travel agent) makes me look at attractions in a different light. There are several rides at the Disney Parks that are fully wheelchair accessible. If you or a family member is looking to take a Disney vacation, but concerned about being able to ride the rides, you are in luck! Here is a short list of rides available:

Magic Kingdom

Aladin's Magic Carpet Ride
If you have an ECV you will need to transfer to a manual wheel chair, but the ride has special vehicles that accommodates the wheel chair.
Jungle Cruise
 An ECV or manual wheel chair can be accommodated on this ride in a special boat.

Disney's Hollywood Studios

Toy Story Mania
This ride also has a special car, and a side track, for wheel chairs. ECV owner's will have to transfer to a manual wheel chair.  
Back Lot Tour
This ride allows accommodation for ECVs and wheel chairs via a ramp.

Disney's Animal Kingdom

Kilimanjaro Safari 
Guests will need to transfer to a manual wheel chair, where they can access the ride vehicle via a ramp.
Wildlife Express Train
ECVs and manual wheel chairs can both be accommodated on this train that takes guests to Rafiki's Planet Watch.


The Living Land Boat Ride
This attraction has a special boat where manual wheel chairs can roll right on board.
Mexico Pavilion Boat Ride
A new boat has been added where manual wheel chairs can be rolled right on board, no ramp needed.

While there are many more rides available to those who can transfer out of their wheel chairs, I wanted to bring light to those that guests can board in their wheel chair.  

Monday, September 13, 2010

Accessible Travel-Walt Disney World, Animal Kingdom

Here is another one of Monique's blogs on accessible travel at Walt Disney World, this time featuring Animal Kingdom.

Accessible Travel: Disney’s Animal Kingdom, Part 1
Being the newest park to join the Walt Disney World family, Animal Kingdom is incredibly accessible. This is NOT just a “wild animal park” – a common misconception. It is a beautiful park that mixes attractions, shows, unique dining, conservation, and of course real animals. This park is also the biggest of all of the Disney parks and it has ‘hidden’ hills. Which means a lot of walking, so if you don’t normally use a wheelchair, but do have trouble walking, you might want to consider renting one when you’re ready to tackle this park.

Pangani Forest Exploration Trail Animal Kingdom offers several “walk through” areas that showcase exotic plant and animal life and are completely accessible. These include the Oasis Exhibits, Discovery Island Trails, Camp Minnie-Mickey Greeting Trails (I guess those count even though the “animals” are Mickey and pals), Pangani Forest Exploration Trail, Maharajah Jungle Trek, and Cretaceous Trail. You can explore these areas at your own pace, and there are even benches to rest on along the way.

The first attraction you come across in Animal Kingdom is It’s Tough to be a Bug!, located inside the Tree of Life - AK’s icon in the center of Discovery Island. It’s Tough to be a Bug! is a cute and clever (but can be scary for little ones) 3-D show. Like most Disney theater shows it is completely accessible to wheelchairs. If you can transfer to one of the attraction seats, which are like benches, I would highly suggest you do so. A lot of the attraction sensory experience is built into the seating. If you cannot transfer, you will still be able to enjoy most of the presentation from your chair.

Camp Minnie-Mickey, as mentioned earlier, offers you the opportunity to meet and take photos with Mickey and his friends. You’ll also find the “Festival of the Lion King" here. Another completely accessible show. But like all shows, there is limited wheelchair seating within the theater so get there early especially on crowded days. If you arrive and they have run out of wheelchair seating you can try to use their seating which is made up of benches and risers. Ask to be seated in one of the front rows to avoid having to climb stairs.

Kilimanjaro Safaris is a must-see for any visitor! On this attraction you board a safari jeep and tour an African reserve. You’ll observe animals like lions, elephants, cheetahs, giraffes, hippos, and others wandering the reserve. It is not uncommon for the jeeps to have to stop while the animals cross the road – you can get up close and personal with these creatures. There is a special loading area for disabled guests. If you can transfer, you’ll leave your wheelchair and board the jeep. You have to be able to step up into the jeep and then rise out of a somewhat low and narrow seat at the end of the tour. If transferring is not an option for you – no problem! The jeeps in this loading area have a specially designed area for wheelchairs to roll right on. You have to transfer to a manual wheelchair, which Cast Members will have on hand for you to borrow. You then just roll right up the ramp, let the CMs secure your wheels, and you’re ready for your safari! Be sure to have your camera ready!

Not far from Kilimanjaro Safaris is the Wildlife Express Train which takes you to Rafiki’s Planet Watch, an area dedicated to the preservation and conservation of animals. Your wheelchair rolls right on the train, no muss, no fuss, no ramps! All areas of Rafikis’ Plant Watch are completely accessible. However, only manual wheelchairs are allowed in the Affection Section (think petting zoo). Probably so no one runs down any of the animals – hey, I’ve seen those of you who are new to scooters drive! Animals and people beware!

We’ll explore more Accessible Disney soon!

Wednesday, September 1, 2010

Accessible Traveling-Walt Disney World Magic Kingdom

I am getting ready to embark on another trip to Orlando, and so for this post I am going to share a friend's blog. Monique is my traveling buddy, and has exposed me to the great world of accessible travel. While I was wheel chair bound I did not try and get out and see the world, but it is possible.

 Monique is currently battling Pompei Disease (you can read her blog for all the details), and uses a scooter to get around. She has become an advocate for Pompei patients and writes a blog sharing her experience, giving a face to the disease, and she also shares tips for getting around. So far she has written two blogs on accessible travel at Walt Disney World, first the Magic Kingdom, and second Animal Kingdom.

I would like to take this opportunity to share her wisdom with other cancer patients, who can benefit from knowing how to get around these awesome parks in a wheel chair or motorized scooter.

Accessible Travel: Magic Kingdom, Main Street U.S.A.
I have stated a few times that I now try to focus on the things I CAN do rather than what I can’t. In that spirit, I would like to share with you my observations on one of my favorite subjects: travel. I will be dedicating some entries to accessible travel and will start with one of my favorite places: Walt Disney World. I would like to take you through the accessibility of each area of each park.

Accessible Disney

Walt Disney World has done a wonderful job with making their parks and resorts extremely accessible to guests with disabilities. The are always making improvements, and as the technology evolves, more and more attractions become accessible or “more” accessible.

Let’s start with the Magic Kingdom. This is written to assist everyone, but I will write it from the point of view of someone who needs to use a wheelchair. Those of you who are still able to walk, but have difficulty with stairs and getting up from a seated position will benefit from this to.

 If you drive to the Magic Kingdom and have a disabled parking placard, make sure it is displayed when you go through the toll both, as the next Cast Member you see will take notice and direct you to the “Medical Parking” area. Otherwise you’ll go with the masses to standard parking which may not give you a wide enough area to unload a wheelchair.
If you plan on renting a wheelchair, the disabled parking area should have courtesy wheelchairs available to take you from the parking area to Mickey’s Gift Station where you can pay for a rental wheelchair. You cannot take the courtesy wheelchair any further. You can also rent wheelchairs and ECVs (electric courtesy vehicles) in the park (available on a first come first serve basis – so get there early, especially for ECVs). Mickey’s Gift Station is located to the left of the ticket booths past the Kennel as you arrive from the parking area.

When you arrive at the Ticket and Transportation Center, you can choose to take either the Monorail or the Ferry Boat to the Magic Kingdom. Both are wheelchair accessible, but the ramp to the Monorail is a bit steep. So if you’re in a manual wheelchair you might want to choose the Ferry as that entry ramp is pretty level.

You’ll go through a Security check point with everyone else, so have your bags open to speed up this process. You can then proceed to the turnstile where a Cast Member will help you scan your ticket and then open a gate for you to pass through instead of the turnstile.

If you want to rent a wheelchair or ECV head to your right after you pass through the turnstiles and before you enter the breezeway under the train tracks.

Main Street USA

I would suggest heading to City Hall to obtain Guide Maps for Disabled Guests. This Guide includes information on which attractions you can take your chair on and which ones require you to transfer to a ride vehicle, as well as indicating where the parade viewing areas are for disabled guests. You can get guides for all the parks, not just the Magic Kingdom. Also request a Guest Assistance Card, especially if you are able to walk, but have difficulty climbing stairs or think you’ll need more time to get on and off ride vehicles. These cards ARE NOT a line pass. They simply let disabled guests use alternative loading areas for attractions – wider doorways, a side track, special wheelchair accessible vehicle, etc. Some attractions have stairs in the queue line and this cards allows you to bypass the stairs on rides like Big Thunder Railroad and Dinosaur over at Animal Kingdom. They are good for your entire visit. City Hall is located to the left of Town Square on Main Street.

All the shops and restaurants on Main Street are accessible. However, later in the day, when everyone is shopping the stores can get crowded and become hard to navigate. I would suggest doing your shopping earlier in the day or during one of the parades or popular meal times. Take advantage of Disney’s Package Express so you don’t have to carry your purchases around with you all day. If you are staying at a Disney resort your purchases will be delivered directly to your resort. Otherwise you can pick up your packages on your way out – this service is available throughout all the Disney Parks, not just Main Street.

Main Street Vehicles

None of the Main Street Vehicles can accommodate wheelchairs, but they do offer curbside loading and unloading and some guests may be able to transfer into a vehicle. The horse drawn carriage and the omnibus are probably the easiest. The omnibus even has room to store up to two manual wheelchairs onboard, if they fold up. Give it a try because you’ll never know unless you do!

The Walt Disney World Railroad: Main Street Train Station

The Walt Disney World Railroad is wheelchair accessible. If you are in an electric wheelchair or scooter you will have to transfer to a manual wheelchair – which they should have on hand for you to borrow for the ride. The train has stations in Frontierland and Toon Town, but if you have transferred to a manual wheelchair you’ll need to go roundtrip, of course, in order to return to your chair or scooter. The ramp is located to the right of the train station.

The end of Main Street brings you to the Hub located in front of Cinderella’s Castle and surrounded by the entrances to Adventureland, Liberty Square, and Tomorrowland.

We’ll explore more Accessible Disney soon.

Updated Posts

I have added pictures to previous posts. Check them out, I think it adds to the story.


I spent this past weekend going through old pictures ( I LOVE to scrapbook!), and came across a few that are interesting and alarming all at the same time. I have been meaning to add pictures to this blog, unfortunately a lot of them are not in a digital format. I do plan to scan them and add them to the appropriate blog postings. Here are some pictures that I do have in digital format that show how cancer affected a 22 year old woman.

This picture was taken in September 2002, on my first trip to see Marshall in GA, I was 21

This picture was taken at the Westin Peachtree Plaza in February 2003,
this was our Valentine's Day, before the Bon Jovi Concert

This was taken summer of 2003, I was at my lowest weight around this time
(80 pounds lighter than in September 02)

At around my heaviest weight, thanks to months of magneisum/saline infusions
November 2006

Still nowhere near where I want to be, but 30 pounds lighter than November 2006
Summer 2010

The theme of these pictures is weight, and that is because I have struggled with my weight my entire life. It's kind of ironic that being overweight probably saved my life. Not many people can survive losing 1/3 of their body weight, but I did. It's kind of sad, at my sickest, I was at my thinnest, and my mom and dad told me how GOOD I looked. In fact, those were their very words when they saw the picture I have posted from the summer of 2003. In their eyes I was thin, but they did not see a picture of a very sick person, because the steroids I was on gave me a nice plump face. If it was not for those steroids they would have seen sallow, sunken in cheeks and eyes. (It was probably their way of coping, by pretending, but I have to admit, it hurt.) No matter how "good" they thought I looked then, my body is not meant to be that size. Yes I enjoyed wearing mediums and size 10-12 jeans, but I was extremely uncomfortable in my skin. I remember getting ready to take a shower and I saw myself in the full length mirror. I did not recognize myself, and that terrified me. I felt like I was wasting away.

As I started to get better, the weight came back. I was wearing size 18 jeans again by the fall of 2004, and that was okay with me. I had been averaging a size 18 since I was in high school. Actually, if I had to pick my target size, I would want to be between a 14 and a 16, and I am working on that now. Unfortunately, once the doctors realized I had a magnesium deficiency I was being infused daily with saline. Salt waler. As I mentioned early, I gained A LOT of weight in those months after the hypomagnesemia diagnosis. Luckily we were able to change the infusion liquid to dextrose, but the damage had been done. I have lost over 30 pounds since I was at my heaviest, but there is still a long way to go.

The moral of this particular story is that sometimes there is a reason it is hard for a person to lose weight. Throughout my childhood I was overweight, but I was never unhealthy. I am big believer in everything happens for a reason, and being overweight saved my life.

PET Scans

In my last post, I touched on PET scans and may have made it sound like I preferred them over CT scans. There is some preference, and with today's technology, yes, I really would.

Let me start by explaining PET.

PET stands for Positron Emission Tomography (by the way, CT stands for Computed Tomography), and in my cancer assessment both were used together. According to
A PET scan demonstrates the biological function of the body before anatomical changes take place, while the CT scan provides information about the body's anatomy such as size, shape and location. By combining these two scanning technologies, a PET/CT scan enables physicians to more accurately diagnose and identify cancer, heart disease and brain disorders.
I began receiving PET scans in December of 2004, after I completed chemotherapy. The prep for the scan was similar to a CT scan, only slightly different. I was given 2 bottles of Barium to drink prior to the scan, and had a CT when I got to the doctor's office. New Mexico Oncology had their own radiology department, so I did not have to go to the hospital for the scan. Once the CT was finished, which ususally took about 5 minutes (with the PET scan, the CT did not need contrast, or the iodine injection). I was then taken to a small room with a recliner, and given the radioactive glucose injection. gives a good explaination for the injection:
The most common form of a PET scan begins with an injection of a glucose-based radiopharmaceutical (FDG), which travels through the body, eventually collecting in the organs and tissues targeted for examination. The patient lies flat on a bed/table that moves incrementally through the PET scanner. The scanner has cameras that detect the gamma rays emitted from the patient, and turns those into electrical signals, which are processed by a computer to generate the medical images. The bed/table moves a few inches again, and the process is repeated.  
This produces the digital images, which are assembled by the computer into a 3-D image of the patient's body. If an area is cancerous, the signals will be stronger there than in surrounding tissue, since more of the radiopharmaceutical (FDG) will be absorbed in those areas.

It takes about 45 minutes for the glucose to move through the blood stream. At this time I would have to relax and not move around. The reason for this is that muscle stimulation could cause the glucose to collect around the muscles, giving a false reading. Also, for this reason, I could not have carbohydrates prior to the scan. The sugars from the carbs would also cause a false reading.

Once the glucose had time to distriubte I was taken into the room with the machine and laid down on a table, similar to a CT scan. The machine however was much smaller, and longer than the CT machine. Kind of reminded me of a hacked up MRI, about 1/4 the length of the tube. As the description from says, the bed/table moves a few inches at a time. The machine at NM Oncology took about 2 hours and 15 minutes to complete. The lab tech would put the table all the way through so that the machine started taking pictures of my pelvis and finished with my head. The last 45 minutes of the scan were usually the worst for me, because I am claustrophobic, and the "tube" is not quite wide enough, and my shoulders would be scrunched. The final 20 minutes were generally when I would start to freak out, and I would have to try and calm myself down by counting the minutes. That is a good way to distract yourself. Sometimes I was able to fall asleep, but when my shoulder got pulled in, that mostly woke me up.

 This is similar to the machine used.

In my last post I mentioned that my final PET scan was done at Athens Regional Hospital on a newer machine. That PET scan took less than 30 minutes (for the actual scan) and did not include a seperate CT scan. I was told several times the NM Onocology had purchased a new PET machine, but they did not have the space for it. I know that the building has undergone extensive remodeling since I moved back to Georgia, so I am sure the new machine has been installed, for which I am greatful. Not for me, but for all of the other patients at NM Oncology who need the scans. Cancer is bad enough on its own, without having to suffer through the testing as well.

It's (Almost) That Time of Year Again!

While that title may sound upbeat, its more of a OH NO! type title. I had my quarterly visit with Dr. Thomas (my oncologist here in Athens) last Thursday. Everything is still looking really good, blood levels are normal, and my Magnesium level seems to slowly but surely be increasing! That reminds me that I need to call and find out the results, but in April it was 1.3!!! That is still low for a "normal" person, but that is excellent for me!

So, the August appointment is when I schedule my December CT scan. Now the CT scan in itself is no big deal. I don't have a problem being stuck with an IV (I would actually rather be stuck by needles than have my blood pressure taken, but I think I have said that before), and I am not allergic to the iodine. My issue (as I am sure it is MANY other's issue as well) is the Redi-CAT prep, otherwise known as Barium Sulfate.

Last Thursday I scheduled my scan, and the lovely healthcare professional went and got my "smoothies" as they are also known. I have just recently started drinking smoothies for breakfast, and let me tell you, Barium Sulfate is about as far from "smooth" as you can get. It does not taste good, it does not go down well, etc. Anyway, as I am reaching for the bag, knowing full and well that I have over 3 months before I have to taste the stuff, my stomach begins to turn.

Let me give you a glimpse into my adversion to Barium Sulfate. During my first hospitalization, I had to have several CT scans. The nurses brought me one of those paper hospital cups, you know what I am talking about, white waxy paper, with a turquoisey-blue and purpley-pink swirl? Anyway, it was my "smoothie." The nurse had been so thoughtful to pour it over ice, and give me a straw. Well, she thought she was being thoughtful. I have learned over the years to drink the stuff room temperature. When it is cold, it is thicker, and thicker liquid does not go down as fast.

Here is my pre-CT ritual: I generally schedule the scan for Monday morning, so Sunday night I pace back and forth, trying to gather the courage I need to drink this horrible concoction, when that doesn't work, I pray, asking for the strength to get it over with. I put the vile liquid to my lips, try and turn my brain off, and chug as much as possible. By the time I begin to choke and gag, I have generally gotten about 1/3 of the bottle down. I then drink some water to try and clear my pallete, and wait 20-30 minutes, and chug some more. I am pretty good about getting the bottle down in three chugs. Monday morning, the ritual reprises itself. Yes, I have to drink TWO bottles.

I have to say, now that I am only having the CT scan done once a year, it seems much harder to get myself to drink the stuff. It could be because I have an 11 month reprieve, where I can completely forget about the stuff. In the beginning I had CT scans ever 3-4 months, then when I went into remission, I was changed over to PET scans 3 times a year, then twice a year. The PET scan required a CT prior to it, and so that included the Barium prep. Starting in 2007, I began having all of my scans done here in Athens. My last PET scan was at Athens Regional, and they have this awesome new machine that can complete the CT scan WITH the PET scan, and DOES NOT require the Barium prep! I was so very excited when I learned of this. HOWEVER, for those of you who do not know what a PET scan is, radioactive glucose is given intravenously, and the glucose will attach itself to any cancer cells. It also gives a much closer look and can detect cancer cells that a CT alone wouldn't. Well, you have to imagine that at some point, injecting radioactive glucose can become a bigger health threat, so after having like 12 PET scans, both doctors agreed that it was safer to go back to just CT scans. Yippee.

Okay, I have explained the process, let me tell you about flavors. I really can't describe the taste, and all I can say is if you have not had the opportunity, DON'T. You really aren't missing out on anything (and your life is probably better off never needing a CT scan). Okay, in Albuquerque I was usually given banana flavor. I have heard from others that banana is the worst, but let me just say, I was able to get it down. However, artificial banana flavoring and scent has FOREVER been ruined for me. My sister had banana lip gloss, made me want to puke. My step-son bought "banana" flavored pudding, I couldn't even be near it without feeling queasy. Now you may say why would I want the banana flavored one if smelling artificial banana makes me sick? Why would I want to ruin another taste or smell?  Here in Athens I am usually given berry flavor. They don't have banana, I have asked. Luckily, the berry tastes nothing like real berries, and I have not found myself being sick smelling strawberry lip gloss.

Oh! I do have to say, I found something worse than Barium! During last year's CT, I showed up at the hospital knowing I was going to have to drink approximately ANOTHER half bottle, becuase for some reason TWO bottles is not enough and they want the stuff SITTING in your stomach. Well, the radiology tech handed me a cup, and it was full of a bright pink concoction. My initial though was YES!!!! The tech said this was a newer suspension and they could mix it onsite. I took a drink, thinking okay, this is thinner, fruity, but not sickeningly sweet, and UUUUGGGGHHHH! Oh my gosh, it's BITTER! It really was worse than Barium, if that is even possible.

So, while the CT scan isn't scheduled until December 6, just thinking about having to drink the two bottles is making me sick, and I have a feeling I won't be finishing my breakfast smoothie this morning.