Parkinson’s takes a toll on your body. For many the disease starts when you are over 50. My dad’s illness had taken a toll on his body and we knew he could no longer join us on rides like Space Mountain; Splash Mountain and Big Thunder; but we hoped to get him on his favorite, he longed to share with his grandkids, Pirates of the Caribbean (POC) and the Haunted Mansion (HM). He also talked about the gorillas in Animal Kingdom and wanted to see them again. He now suffered from advanced Parkinson’s; he had had three strokes effecting his balance, gait, language and patience. This was further complicated by diabetes, neuropathy and hearing loss.
When we arrived they had a wheelchair at the resort while we waited for the scooter rental; but it was too small for my dad. So now we had the challenge of checking in and getting my dad to the elevator without a wheelchair. Part of the group went upstairs while the rest helped my parents get to the elevator. As we made it to the elevator a CM came running up to the elevator with a larger w/c. It was such a relief. It was a tough lesson learned as we knew the resorts had wheelchairs we did not realize the availability was so limited and that there were different sizes.
I am not blaming Disney and their staff for the difficulties but my goal is to raise awareness of the struggles of park visits with the disease and struggles of our aging generation. On our first day in the parks we were only able to ride three rides and those were rides accomplished by the healthier group members. My father spent most of his time people watching and enjoying the smiles on the grandkids. While he was equipped with a cell phone he forgot that it was needed for more than just using it to contact the family. While the kids wanted to ride some attractions, he took off with my mother in EPCOT to browse through the shops in World Showcase. In an instant he was gone and my mother called in a panic asking for help to find him. We split up into pairs and took pavilions to search while one stayed out the other searched inside. We tried repeatedly to call his cell phone but it went straight to voicemail. After nearly two hours with a dinner reservation looming he finally answered his phone. With his scooter he rode back to the resort to take a nap forgetting the rest of us my wonder about his whereabouts. Frustrated and tired we contacted guest services who were gracious enough to get a taxi for us to the dining reservation. We could not take the scooter but they assured us the location had a wheelchair to help get him to the restaurant. Upon our arrival alas this wheelchair was too small too; it was child sized not adult. We made it to dinner and had a wonderful time with a waiter who could see we were stressed.
Mornings are struggles with an aging parent. Hygiene is difficult and family assistance is required along with patience. My dad had to take his medications, eat then return to the room to begin daily hygiene routines. Parkinson’s affects the muscles and in later stages incontinence and encopresis can be a part. Typically it’s near 10:30 or 11 before we could leave the room. Often it seemed as we left the room it was near lunch time and the process would begin again.
On our second day we went to the Magic Kingdom to ride some of my dad’s favorite rides with him. He found he could not enter the boat without assistance at POC and of course Splash Mountain and Big Thunder were not an option. He longed to enjoy Haunted Mansion however he could not walk down the hallway and enter the ride for the distance was too long and we knew he could fall before reaching the doom buggies and could harm other visitors. We asked if he could use the wheelchair entrance and we were denied because we did not have the alternate entrance pass. We attempted to obtain one from guest relations but were emphatically told the passes were only for children. It was time for lunch and my parents returned to the room which can average nearly two hours when trying to get a bus that can load both scooters. When my parents returned to the Magic Kingdom we tried the Haunted Mansion again. This time we got an awesome Cast Member who allowed him into the alternate entrance. This was before the current Disability Access System (DAS) We took the shortcut down the hall missing the preshow but were excited to get him on the ride. We struggled to get him into the moving doom buggy and the walk was a challenge. With advanced Parkinson’s the person can have difficulty getting their legs to move and walking short distances can be as challenge as they can “freeze” along the way. They slowed the buggy and we made it. I was in the buggy ahead and at the end of the ride jumped out to let the Cast Member know he couldn’t get out at full speed. She just stared at me and I was about to panic but I have later learned that they stay in character and she did slow the belt so we could get him out. We were able to get him on Haunted Mansion again before the end of the trip. I learned that taking him directly to the doom buggies was the best option with his limited mobility. I also learned that despite the fact that the CM’s appear to ignore you they will do as you ask so the second ride was more enjoyable. Success! A highlight of his trip.
We were able to get him into the show- like attractions such as Mickey’s Philharmagic, Finding Nemo, It’s Tough to be a Bug, and more. The biggest problem we had was that many people don’t realize that a person on a scooter is also in line. Bringing a scooter in some lines was a challenge as everyone rushed around you in line as if you were just an obstacle to bypass.
Another unfortunate experience was the bus stop. While the buses can be a challenge trying to get transport with two scooters was something we tried to avoid at all cost, even if it meant walking across EPCOT to catch the monorail to the Magic Kingdom. The bus stop was far worse than the wait. One morning we arrived at the bus stop in front of the boardwalk and we were the only ones present. As people arrived my father was subjected to cruel remarks about his need for a scooter. Sadly it was more common than one could imagine where people made disparaging remarks about his need for a scooter. Most common was “if you really needed a wheelchair you wouldn’t rent a scooter”. Ignorance was abound but hurtful and not a great way to start a morning. My father did have a motorized w/c at home; but what most people don’t realize is the difficulty of transporting a scooter when traveling a great distance. Then you get people trying to get on the bus before the scooter can load. Fortunately the bus drivers handled loading situations professionally. We also tried to aid in the effort by having our extra family members stand in the regular line when available leaving only two to help with the scooters.
Our trip was in December and fortunately we had mild weather with temps dropping in the mid 50’s. My father was unable to tolerate the temperature at night since he was on blood thinners that made the cool difficult to tolerate even at 55 degrees. We were able to get preferred seating for Illuminations. Despite wearing a heavy jacket we purchased a blanket to help him tolerate the cool night air to watch the show.
He did have trouble with the scooter flipping twice. Once was on the paths in Animal Kingdom where the uneven ground caused the scooter to roll. Fortunately there were some wonderful guests that helped my mom set him and the scooter upright again. He had minor scrapes and bruising. I was with the grandkids in line at Expedition Everest and missed the entire event so we were thankful it wasn’t worse. Unfortunately it came as he was on his way to see the gorillas. My mom feared he would flip the scooter again and so they left the park to care for his minor injuries back at the room. The second incident happened on a bus. My dad wanted to surprise us by purchasing DVC so we could continue to enjoy the Disney future trips knowing his days were limited. He ventured off on his own to see the models and the driver did not secure the scooter and he flipped inside of the empty bus. My dad was one to avoid a scene and he was fortunate that his blood thinners didn’t cause serious problems with the bruising. We have learned to be more careful with scooters. Scooters do have weight limits and his scooter was rated to hold 110lbs more than he weighed but they can flip nonetheless.
When our trip ended we left with loads of new memories from this three-generation trip. My dad planned his next visit on the trip home. His goal for his next trip was to ride Pirates of the Caribbean one last time and go out to see the gorillas he loved to watch. Unfortunately he passed away before he was able to return. Today with every new trip we honor him by heading straight to the Pirates of the Caribbean. Most of us have a tear in our eye and often a lump in our throat thankful for the many wonderful memories he has given us through the years on our Disney vacations.