Wicker wheelchair with Swiss cheese plants floating behind sugar cane frame.

Parkinson's Fantasy Versus Reality Television

Back when I was a kid, a time known affectionately as “the 1970s,” there was a television show, which was entitled Fantasy Island. In the show, the premise was that Mr. Roarke, who was the boss, would grant people their wishes and they would be able to do whatever. Inevitably, he would meet them mid-vacation to discuss the difficulties of the choice and bring the guests back to some level of safety.

Now, producers are making this into a movie that will be out in 2020. I personally think the new directors are getting the plot wrong, but that’s because I'd rework it a little differently.

Hence, with my special power (imagination), I'm going to turn it into a reality show for people with disabilities to wish for something they used to be able to do to magically return so that they can relive their fantasy. And yes, the show’s producers would magically fulfill their fantasy.

Our own Fantasy Island

As a person with Parkinson’s, a Parkie if you will, I’m trying to think of what fantasy I would choose to fulfill since I would definitely want to be there. Even for a 2-week reprieve, wouldn’t you?

Would I make my fatigue vanish? Should I wish for my tremors to vanish? How about my gait? Do I use my wish to walk a straight line so that I can go to stand atop Angels’ Landing at Zion National Park? Probably no for the last one, seeing as I’m so afraid of heights, I get nervous watching the video, but you get the idea.

Some people might wish for the return of romantic abilities while other visitors might opt for a fantasy that involves freedom from mental anguish. Other people who suffer from different conditions might wish for sight or hearing. A simple wish might be the return of a smile or being able to button a child’s coat for him or her. Other people might just want to reread great literature or solve higher-level math problems. Whatever the choice, it’s yours.

 

 

Wishful thinking?

I’m sure we all have entertained the fantasy of a cure for all of us, but the size and permanence of that are too big for the island to let people take their wish with them. Of course, we could opt to stay in the fantasy by never leaving the island, but inevitably, we’d have to figure out how to make that financially work.

We need to eat and pay the all-inclusive bill. Even on a tropical island paradise, that could be something else altogether. Besides, all the fun jobs of alerting people to the plane’s arrival and the master of wishes are already taken.

Getting off of Gilligan's Island

Thinking about TV makes me think about the non-reality cable offers. Nevertheless, our Parkinson’s lives do mirror some of the moments of television. For instance, many of us have had the fantasy that we could escape from this progressively-degenerative, incurable, acute, neurological condition we have. Like the cast of another show I grew up with in the 1970s, albeit in reruns, Gilligan’s Island offered the opportunity that the cast would escape from their shipwreck, only to find themselves still trapped when the credits rolled.

For me, I found myself feeling like this after visiting my doctor in December. He told me that my Parkinson’s wasn’t progressing since I was “tremor dominant”, as opposed to "akinetic-rigid” variations of this condition. My UPDRS number has remained consistent at a 15, where someone in the 60s (out of 199) is at the beginnings of being considered at a stage of enhanced disability. This is when a person would be getting to stage 3 of the condition (bilateral and mild impairment).

Cautiously optimistic

I’m bilateral, but I can still button buttons, and I don’t freeze. My memory is still working, though I have hiccups in some instances. This isn’t the dementia my gram experienced when she had Alzheimer’s. Instead, this happens when I momentarily get lost in my words and come undone in speech. If that comes up, I try to write notes down in advance so I can know where I’m going. This is my working memory, and it’s brief as opposed to losing the past few years of hard drive memory.

Thinking positively about the visit, extending my next visit to 6 months (instead of 3 or 4) should make me feel like I’m A-OK. However, I’m still on the island. I just opened a “goody package” of chocolate chips that my aunt Toot sent. There are some mp3 players from friends in the box as well as portable chargers and some books to read, but that's it. At the end of the day, I’m cautiously optimistic at best. I’m still going to get the DBS process at some point. I’ll still need to take my meds. I’ve still lost many things, and I’ve seen other abilities deteriorate. But…

Yes, the Glass is half full, but PD is unpredictable. As a result, I’ll just make sure my island hut is stocked and ready for the long haul. Besides, Heather is my Mary Ann.

Parkinson's representation

Unfortunately, there aren’t many big movies or shows for Parkies about Parkies. We have Love and Other Drugs. Here, Jake Gyllenhall plays the role of attractive male suitor. Anne Hathaway plays the role of attractive Parkie. I will say that she does a good job playing people with medical / mental health issues. See Amazon Prime’s Modern Love (based on the newspaper column in the New York Times) if you have the service. The whole 8-episode series is great, but she’s awesome in her part. We also have Awakenings, but that’s not quite the “rom com” that the other movie is. Most PD movies are either indies or documentaries.

For this, I think representation is a good thing. Sure Michael J. Fox does act with Parkinson’s since his diagnosis was revealed after Family Ties and Back to the Future fame, though he takes smaller roles and voice work. In fact, when he guested in Scrubs, he championed the cause of obsessive-compulsive disorder instead of Parkinson’s.

Getting it right

Some people will see characters of different ethnicity, races, genders, religions, and abilities as “token” politicization. They'll even go "trolling" about it! Nevertheless, different people make up our world. The Walking Dead handles this well. They even have ACTUAL people with hearing disabilities playing these roles on the show.

As a kid, I grew up with The Facts of Life, which allowed Geri Jewell to play a recurring character with cerebral palsy while having the condition as well. Her stint was only 12 episodes, but it was still a first. Now, there's American Girl's Joss doll and the singer Lizzo, who are showing that there are more shapes, sizes, colors, ideologies and conditions than we lived with in the past. And yes, this probably sounds politically correct, but when people don't see themselves doing things in the media world, it makes them question if it's a sign that they make people uncomfortable to watch or they aren't welcome.

Representation matters

Representation means a lot. Besides, we don't want pity, but empathy and awareness to move interest in creating a cure go a long way. After all, we're reality life. So even if I can't do magic, I can keep myself visible and advocate until Parkinson's doesn't exist.

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