Of Parkinson’s, Second Life and a story worth reading

We’re all probably familiar with the story of Fran Swenson, now 86, a Parkinson’s sufferer who has seen something of an overall improvement in her condition which she attributes to Second Life.

It’s a remarkable story, initially broken by Hamlet Au in February 2013, which has again  demonstrated the therapeutic impact of Second Life which is not always obvious to many of us, and which can itself become the subject of wider study.

Now Fran, who is known in-world as Fran Seranade, and her story are again being picked-up by mainstream media as the San Diego Union-Tribune  (Fran is a San Diego resident, rl) provides more insight into Fran’s life and that of her family, together with thoughts and feedback from Tom Boellstorff, an anthropology professor at UC Irvine, who took interest in Fran’s situation back at the start of the year, and Donna Davis, a strategic communications professor at the University of Oregon.

Pam Kragen, author of the piece, provides a very focused and heart-warming article which not only encompasses Fran’s life and her family, it also does much to overturn the “accepted” view of Second Life so often adopted by those outside of SL.

Some of the benefits offered by the platform may appear obvious even to those uninitiated into Second Life, as Fran explains in the article, “It’s a place that gives me great satisfaction. I’m dancing now and I can run, hop, jump and have fun. I’m not just in my apartment, I have the whole world now. It’s thrilling.”

But it’s the underlying benefits which make the real story here, and which have drawn Fran to the attention of Boellstorff and Davis, and now the San Diego U-T. In real life, Fran has reported she feels mentally better as a result of the time she spends engaged in SL; she has seen her physical capabilities and freedom of movement improve, and has felt a corresponding uplift in her overall quality of life.

Having lost her husband to Parkinson’s in 2003, Fran found herself diagnosed with the illness the following year. As a result, her son Ken, living on the other side of the country in Florida, proposed the idea of using Second Life as a means of bringing the family together more easily, offering to build a home for them in-world.

Fran’s daughter, Barbara Richards, living up the coast from San Diego in Carlsbad, CA, admits to Kragen that, initially, she wasn’t that keen on the idea. Her reasons were perhaps all too familiar to many of us: the steep learning-curve for those not particularly well-versed in the nuances of virtual worlds and / or computer games and environments; the negative image of SL as a sexual  playground, and so on. She also admits that she was one of those who tended to point a derisive finger at SL users, “We would make fun of the poor people on Second Life because we didn’t think they had a real life,” she candidly tells Kragen.

Like most who gain a decent foothold in SL, Richards was quickly converted to the platform and through it and her avatar, Barbie Alchemi, found her own creative outlet. But it was in witnessing her mother’s response to the platform that gave her the greatest inspiration, to go ahead and build Creations Park, a place where her mother and other Parkinson’s sufferers can spend time, find support and enjoy one another’s company. She and her family have also formed a support group raising funds for Team Fox, the fundraising division of the Michael J. Fox Foundation for Parkinson’s Research.

In 2012, the group raised $4,000 for Team Fox. This weekend, as part of a goal to raise $12,000, they’re co-hosting in a further fundraiser at Angel Manor’s Rose Theatre Ballroom to mark the premiere of Michael J. Fox’s new television show (see below for details).

Even so, as Kragen reports, it’s still very much an uphill struggle for the Creations for Parkinson’s team, in part  – again – because SL does have a stigma attached to it and because the learning-curve in getting to grips with it is so high for many people. Things are further hampered by the fact that there are many in SL who suffer from Parkinson’s and other illnesses who don’t want to talk about their condition or admit to it, because Second Life allows them the freedom to escape their real life limitations and pains.

Since starting Creations, Richards has made it – and the $5,000 a year spent on maintaining it – her full-time unpaid job. She believes the improvements her mother has experienced are far from coincidental, and Tom Boellstorff is prone to agree, explaining to Kragen his view that Fran’s improvement might be caused by so-called “mirror neurons“, which cause animals to perform the same action being performed by another (think seeing someone else yawning, only to yawn yourself – that’s a mirror neuron effect). In Fran’s case,  Boellstorff  believes a mirror neuron effect is in operation as a result of her daily visual stimulus of seeing herself in-world carry out a range of physical  activities denied her in real life: Tai Chi, dancing, and so on.

While Fran’s situation hasn’t – as yet – been experienced by other Parkinson’s sufferers in SL, it has been enough to encourage Donna Davis to establish Frantastica alongside the Creations region, where she now hosts the weekly Parkinson’s support group sessions, in hopes of learning more about how the avatars can help patients.

Kragen’s article is a fascinating insight into Fran’s situation, her family’s work inside Second Life and a very positive and sympathetic look at the platform as a whole, which also touches on the work of Virtual Ability Inc., and the use of virtual environments in therapy.

All-in-all, a recommended read.

Creations for Parkinson’s / Team Fox Second Life Premiere Party

Michael J. Fox, himself a victim of Parkinson’s disease and founder of the Michael J. Fox Foundation for Parkinson’s Research, makes a return to US television screen this fall (autumn). To mark the event, Team Fox SL and Creations for Parkinson’s are hosting a special VIP Premiere Party at the Rose Theatre Ballroom, Angel Manor, on Thursday September 26th, from 15:00-18:00 SLT.

Tickets are L$1,000, and can be purchased from special in-world vendors such as those at Creations Park and Angel Manor. The party will feature a special auction with some pretty amazing items up for grabs – including a video about the highest bidder by the Drax himself! Find out more on the Creations for Parkinson’s website. All income and donations arising from the party will go directly to Team Fox.

Related Links

• Parkinson’s patient exploring virtual world – Pam Kragen, San Diego Union-Tribune
• Parkinson’s patient, 86, builds a new life in a virtual world – Pam Kragen, San Diego Union-Tribune (abridged version)
• Creations for Parkinson’s website
• Creation Park SLurl (Rated: General)
• Team Fox website