Is this the real life? Is this just fantasy?


I woke up at 8am, surprised by the solid night’s sleep I had. Not once did I get up from the time my head hit the pillow at 1130 the night before. I swung my legs out of bed, fired up the coffee machine, and while it warmed up, brushed my teeth, washed up and prepared for the morning rituals. Once everyone in the family was set to begin their days, it was time to walk the dog. I felt particularly good this day so Sam and I ventured out on a long walk to town, picked up a few groceries and walked back arriving a full 30 minutes sooner! It was then that I realized I had not taken any of my PD medications – I had not even connected to the duodena pump that is my lifeline. Strange. I’d now been awake and active for some 3+ hours and I had no dyskenisis, no pain, no tremors, no dystonia. No freezing, no gait problems, no joint pain, no stiffness. My mood also seemed improved – I was hopeful, felt encouraged, not even the slightest sign of angst or depression. My, this is going to be a great day I thought! I called a few friends and made plans to go out for lunch and an afternoon hiking trip at the conservation area just outside town. We’d be back in time for me to have a shower, whip off a meal for the family and still have time to catch a film before bed.

Well, for regular readers of my blog, you’ll know that this would not characterize most of my mornings, afternoons or evenings. At least since I’ve had Parkinson’s Disease. I don’t get regular sleep, have a shopping list of PD symptoms, and am lucky to “pack” 1 or 2  activities into a day! Yet, I recently read a piece published by the international publication Parkinson’s Life which assures me that all of this may be in the past (or is it in my future?).

Thanks to the world of virtual reality, it seems we who have PD – or for that matter any chronic condition – will no longer be “trapped” in our worn-out or failing bodies. We’ll be liberated by a world where “debilitating diseases cease to exist”. Check out this excerpt from Parkinson’s Life, January 21, 2016 (full article available here).

Imagine a world where Parkinson’s doesn’t hold you back – where your symptoms go away with the click of a mouse. That’s exactly what a growing number of people with Parkinson’s are doing every day when they log on to virtual reality games like ‘Second Life’. And, according to early studies, the benefits can have an impact in the real world, too

Nothing is quite what it seems in Second Life, a virtual 3D world where you are just as likely to cross the road, start a business or fall in love as in real, everyday life. Or, more significantly, where you are guaranteed to not have Parkinson’s. Welcome to the place where debilitating diseases cease to exist.

For people living with Parkinson’s disease Second Life – now 12 years old – is proving to be more than just fun and games, according to new research. Rather, it is providing an outlet for many who are disabled in the real world, to do the things they otherwise would be incapable of, but through their computer.

Among the 1 million active users is ‘Fran’, an 88-year-old whose Parkinson’s makes it a struggle to get up from her computer on a bad day. Yet, when she’s sat at her machine, connected online and logged in to Second Life, Fran is free to do what she wants, as she pleases, liberated from any sort of movement disorder. Fran even claims that living in the virtual space has improved her mobility.

Next, we have an avatar called ‘Tom
Bukowski’. Tom’s actual surname is Boellstorff, and his real purpose on the platform is to study the behaviour of users – by immersing himself in the virtual world – to better understand how people with disabilities such as Parkinson’s use online environments for social interaction and creative productivity.

Tom Boellstorff is, in fact, an anthropology professor at the University of California, Irvine (UCI) and author of ‘Coming of Age in Second Life’. From his studies he believes encounters in ‘virtual’ spaces can be just as significant in terms of individual experience and development as real-world interaction.

“To say Fran’s experience isn’t happening in the real world is false,” says Boellstorff. “Virtual worlds are online places of culture that impact life in the physical world. Online and offline can both be real.

“Many of Fran’s encounters in Second Life are very authentic and similar to what many persons with disabilities find when they gravitate toward virtual worlds for social interaction and creative outlets.”

Boellstorff is currently interviewing users – in real life as well as the virtual world – who, like Fran, have disabilities, as part of a newly funded US$276,900 National Science Foundation study that began in July 2015 and will run until June 2018. “In Second Life I’m a digital ethnographer,” he says. “You have to live inside the community that you’re studying.”

As an early user of Second Life, Boellstorff (aka ‘Bukowski’) started running into people with disabilities. ‘DB’, an architect who before being diagnosed with Parkinson’s disease in the early 2000s helped design the Los Angeles’ Walt Disney Concert Hall, is another example.

When Parkinson’s began to take over and make work in the real world impossible, DB turned to Second Life as a creative outlet, which allowed him to design structures that would otherwise be impossible and keep his passion for architecture alive.

‘Solas’, is a clothing designer whose Parkinson’s complications forced her out of
the fashion industry. In Second Life, however, her designs evolved to new levels of creativity she never could have imagined in the physical world. She’s now a well-known fashion designer for avatars on the virtual platform.

The online community helped her overcome the isolation that persons with disabilities commonly experience and gave her a creative, productive outlet.

As Solas told Boellstorff: “I feel more comfortable in Second Life because people don’t see me shaking… I don’t have Parkinson’s in Second Life, and that makes me so happy.”

People with Parkinson’s like Fran, DB and Solas who are using Second Life may be blurring the lines between the real and virtual worlds. What’s clear, however, is that this ‘escape’ to an alternative reality is having a positive effect on the way they experience their condition.

Personally, I find the notion of living a “second life” through some such program as “Second Life” to be too unreal and perhaps even more isolating. On the other hand, the closest I’ve ever been to virtual reality was on those flight simulator rides back in the 1980’s. It might just be my turn to get back to the future. Solas – if you’re reading this out there in Second Life – please prepare the design of my avatar’s outfit. I think I’d look stunning in something blue…..




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