Woman with Parkinson's Reports Significant Physical Recovery After Using Second Life - Academics Researching

This is Fran, an 85 year old woman who plays Second Life as an avatar named Fran Seranade, and while that’s interesting in itself, many other senior citizens like her are known to be active in SL. Here is the truly extraordinary thing: For over 7 years, Fran has been afflicted with Parkinson’s Disease, a degenerative disorder of the central nervous system afflicting millions around the world, including actor Michael J. Fox and sports legend Muhammed Ali. In Fran’s case, Parkinson’s has made it difficult for her to stand from a sitting position, and maintain her balance while upright. But now Fran reports she’s gained significant recovery of physical movement -- as a direct consequence of her activity in Second Life.

How did this happen? According to her, she originally used Second Life just as a fun way to socialize, but “[a]fter awhile I began to identify with my avatar and feel like I was actually doing what she was doing.” On one occasion, she played with some tai chi meditation animations for her avatar (that’s her below), and this was a turning point:

“As I watched her,” as she tells me through e-mail, “I could actually feel the movements within my body as if I were actually doing tai chi in my physical life (which is not possible for me).” She made this avatar-based tai chi a daily routine while meditating, and then sensed it was having an impact on herself:

“For a year I have sat and slept in a motorized lounge chair that brings me to a standing position when I push a button.” After weeks of watching her avatar practice tai chi, however, “I could feel that my body had become stronger.” Until a day came where she was able to stand without motorized assistance. “Now,” she says, “I can go from a sitting to standing position without even using my arms to push against the arm rests. This has been absolutely thrilling for me.”

This isn’t the only apparent physical effect spurred by her Second Life usage, for she reports it’s also helped her with physical equilibrium: “For years when going down a curb to get into a car I would put my hand on the car for balance. One day I said to myself, ‘I know I can step down from this curb and keep my balance because I have seen my avatar do it.’” She succeeded at doing just that. And, she adds, “I have maintained that ability for two years now.”

These are very dramatic claims, but they first came to me through my friend Tom Boellstorff, Professor of Anthropology at UC Irvine and fellow with the Intel Science & Technology Center for Social Computing. Lead author of Ethnography and Virtual Worlds from Princeton Press, Tom’s among the most well-respected academics studying the social implications of virtual worlds, particularly Second Life.

While researching the way disabled people use virtual worlds, he met Fran and her daughter Barbara, who now leads a Second Life-based support group for Parkinson’s. (Her avatar name is Barbie Alchemi.) Tom’s met both Fran and Barbara in real life, and recorded video of Fran's physical recovery, and believes her condition is worth studying further. In this he’s joined by Donna Z. Davis (PhD), an Assistant Professor at University of Oregon (avatar name: Tredi Felisimo), who recently received a research grant to further study the physical and psychological effects of virtual worlds like Second Life on people with Parkinson’s. They have a tentative theory for why Fran's recovery might be possible: 

Meeting with Barbara, Tom, & Donna's SL avatars at Parkinson's support sim Solace Lake

“While neither Tom nor I are medical researchers, we are currently communicating with a number of neuroscientists who are very interested in this work,” Dr. Davis tells me. “We believe that Fran's experience may be similar to results in other current research being conducted with individuals with brain disorders or injury where, by watching yourself -- or your avatar -- you are essentially retraining the mind to function. There is evidence from studies of neuroplasticity and the function of mirror neurons that people may be able to ‘rewire’ the mind to regain neurological function. This is not unlike the long standing practice that athletes have used who have been taught to visualize themselves in competition in order to make their movements more fluid and precise.”

Now many researchers like her and Boellstorff are conducting extensive studies in Second Life, hoping (among other things) to learn more about the phenomenon Fran reports. “[W]e anticipate having partnerships with a number of medical researchers in the very near future,” she says, and they will bring in volunteers with Parkinson’s to try the avatar-driven path to recovery Fran experienced: "Fran reported a change in her motor function after a very short amount of time of watching her avatar doing tai chi. If Fran's experience is common, we could have tentative conclusions very quickly. However, there are many factors we have to consider before we could even begin to generalize results.”

It’s important to echo Dr. Davis’ cautionary note. “Fran is a truly remarkable and resilient woman who refuses to be defined by Parkinson's or by her age,” as she explains. “Her approach to life might be very influential in her personal results.” For that matter, Second Life remains extremely difficult for most people to use, so even if Fran’s experience could apply to others, SL itself might still be inaccessible to many of them. “We have to be very cognizant and compassionate about individuals who may not only find computers and the Internet challenging or intimidating, but may also have challenges with simply operating a keyboard and mouse.” And that’s only the start. For their research, she adds, “We anticipate having support in place to address those concerns.”

Fran’s daughter Barbara will also qualify what has happened to her mother. “Some of her Parkinson's symptoms have continued to progress, and she has continued to age.” In that regard, she adds, “SL certainly is not a ‘cure’.” But beyond the physical improvements are other advantages: “She feels and thinks young, so it is thrilling for her to watch her avatar run and dance again (very much like the movie Avatar). She loves meeting fascinating people from all over the world. Fortunately she is a basically happy person and has never been depressed, but SL increases the joy in her life.”

Or as Fran herself puts it to me: “I have no idea if anyone else will be able to identify with their avatar and get the results that I have, but I have found Second Life to be very beneficial to me on so many levels.”

Boellstorff notes that many disabled people have found value in virtual worlds, not just those suffering from Parkinson’s, but from strokes, autism, and phobias too. In his research, he’s heard the following sentiment come from many of them: "I'm not my body. I'm not the same thing as my body." Because as their physical body begins to fail them, in some ways their virtual body begins to seem more real than the one they were born with. "It's not at all about denying the body or escaping the body,” as Boellstorff argues, “but expanding what the body can mean." For him, then, the experience of the disabled in virtual worlds presents "a kind of the tip of the iceberg effect about what it means to have a body".

And, one might add, if the particular experience of Fran is broadly relevant to the real lives of people with Parkinson’s, like her, the implications may be far larger still. As for Fran Seranade, you may meet her in a ballroom in Second Life, whirling away in an opulent evening gown, young, beautiful, vibrant, a form quite different from her form in the material world now, but perhaps more true to who she really is.

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Comments

[Gogo]

Wow, she's 85! She's adorable!

[Alicia Chenaux]

85?? No way... she looks like she's in her 60s! It's really amazing what mental strength and determination can do for a person. Way to go, Fran!! Keep dancing! :)

[Lenni Foxtrot]

This is so interesting, and wonderful to hear. May sound silly to ask, in light of her awesome recovery, but do you think this is why I dance better in RL now? Always awkward in RL on a dance floor prior SL, but after watching my avatar dance for years so well, I started to let go and dance more myself. Friends say I honestly look like I learned to dance.

[Hitomi Tiponi]

Hopefully when Fran gets to road junctions she doesn't start crossing then bounce back and cross properly :-)

Seriously though this is a wonderful story and shows that the benefits of virtual worlds go beyond the obvious. Hopefully she continues to enjoy Second Life and improve certain aspects of her condition for many years to come.

[Wisdom d'Avi]

It's great to read a share stories like this but I wonder why people find these results so amazing.

It's a natural occurance. Athletes use mental imaging and practice to improve their skills.

Second life gives life to the immagination. Our mental images are brought to life in virtual reality.

Virtual reality is an untapped wonder.

[Isadora Fiddlesticks]

This is a great development in support of games and virtual worlds. I've met and chatted with people in SL who are disabled in RL, and it's amazing at how they transcend their disabilities inworld...and when it translates to them feeling better and actually being healed in real life, it's a fascinating and wonderful thing...LL should have kept their original mission statement.

[Pamela]

I joined SL after reading an article about the psychological effects that an avatar can have on the "operator", which I found intriguing. This kind of impact, though, is even more exciting, and I hope to hear more about it.

[Tracy Redangel]

I love hearing positive stories like this. Fran seems like an amazing lady.
I wish the few documentaries about SL would feature these kinds of stories. Life 2.0 portrayed a somewhat (I thought so) negative portrait of Second Life.

[Ayesha Lytton]

I have met Barbie, Fran's daughter, in RL and I am also their landlord in SL. They are fantastic women who are doing so much to help people with Parkinson's Disease. I'm so happy to be a part of their project.

I have a disability myself, and while I can't attribute any physical improvements to SL, it has certainly changed my life for the better. I too enjoy dancing in SL, and doing things I can't in RL. Most importantly, I've met many wonderful friends. My SL friends helped me gain the courage to escape a RL abusive relationship, rebuilt my self-esteem, and helped me heal emotionally. My horizons have expanded as I've taken several road trips to meet SL friends. I have a SL business for 5 years now and I'm building a new RL career in part from SL.

This platform has so much potential to help people with physical limitations, and indeed the world, if only its creators would start to take an interest again. I still believe that virtual worlds are the future, and we are the pioneers.

[Eowyn Verwood]

I think most of us who participate in SL know of the emotional effects both positive and negative. Its truly amazing what a positive effect SL has had on my self-confidence in RL. Its been an outlet for creativity and self expression. Its a powerful tool when used correctly.

[Donna / Tredi]

Thanks James! And thanks for the insightful feedback. We look forward to beginning the work to see if we can back up the stories you share. If you know someone with Parkinson's who may be interested in our study or provide care for someone with Parkinson's, please find me in SL (Tredi Felisimo) and leave me a note there. Likewise, if you want to participate in our support groups, find us on the Creations for Parkinson's sim! The beautiful sim is open to the public.

[wenmac]

i've always felt quite connected to my avatar, even including it in my biz name. but now, this article gives me hope that my mom with parkinson's might be able to join me and i can offer her ways to re-ignite her inner self that has been lost with her disease, and bring her some happiness and freedom in a way she may have never imagined before.... :)

[Extropia DaSilva]

I believe gymnasts and divers mentally rehearse their moves and that this helps them improve their routines. Functional brain-imaging shows that if you merely imagine moving in a certain way, the brain 'lights up' in a manner that is very similar to the patterns it would display, had you actually moved like that.

So maybe something of this nature is going on here? Fran has incorporated her avatar into her mental map of herself and when it moves her brain responds with activity closely related to what it would have shown had she moved?

[Robert]

SL remains a kind of self medication. Needs to be stressed 'your results might differ'

[Quan Lavender]

I think there is only one thing to add. We ALL identify with our avatar. Our brain is build to digest information from the senses and cannot differentiate between 'real' and 'virtual'. Many research proved that, like the Rubber Hand Illusion: http://www.youtube.com/watch?v=sxwn1w7MJvk

[Carter Giacobini]

Such a fantastic story! I hope that they can develop her methods even further, creating a program for people who are battling w/ Parkinson's.

YAY FRAN!! Go on w/ your bad self! ;-)

[Arcadia Codesmith]

Even if it doesn't work for everybody, a low-cost therapy that helps some is priceless. I look forward to hearing more.

[ZZ Bottom]

Linden LAb, it there are times You All must be proud of what you created, this is one of them!

[Pathfinder]

Amazing and inspiring story. Wow.

If they're looking to connect with neuroscientists and neurologists who have done research in virtual worlds, they should definitely touch base with these folks:

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0033843

[Kim Anubis]

That's the SL I love -- thanks, Hamlet. And thanks for the link, Pathfinder. :-)

[Pussycat Catnap]

That's really amazing and heartwarming to read. Her name sounds familiar too - wondering where I've come across her, or if its just the sl-lastname triggering in my head.

[Leondra]

so interesting! I know there has to be therapeutic effects of the connection one develops with their avatar. I feel that, although nothing like overcoming something like Parkinsons. More like dancing better in RL because of practice in SL. It has to be a real connection...not a bought shape, and not a disconnect with the human idea of ourselves we hold in our heads, that can manifest such a huge mind over body effect. I would like to see further studies. Great article!

[Tom Boellstorff]

Thanks everyone for the thoughtful comments! Fran and Barbie and all of the folks involved with this project are absolutely inspiring, and I'm honored to be able to work with them. We have some very interesting ideas up our sleeves that do speak to many of the issues raised in the comments - including how these effects might be similar or different from other forms of identifying with an avatar, and also how artists and athletes can "practice" by imagining what they are doing, or watching someone else, and so on. So stay tuned. And because I'm new to this area of research myself - if you think of other research that's been done that might be useful for us to look at, please do send on the citations to me: tboellst [at symbol] uci [dot] edu

[Urcheon]

This is very interesting. I will pass the info along to someone I know with Parkinson's.

It makes me wonder though. If watching your avatar do healthy things can have a positive physical impact... What effects could there be from watching your avatar being killed and mutilated repeatedly in violent games? Although I guess in those cases they usually don't associate as strongly with their avatar but some might.

[Urcheon]

I also wanted to add that this reminded me of my studies of Meditation, Lucid Dreaming and Flotation Tanks. I believe all these methods are related and that they can help people heal & improve.

[elizabeth (16)]

is everso good to read about this(:

[Iggy]

Classic post. I've shared this and Path's link with my class, who have encountered mostly negative accounts of immersion in virtual worlds.

Fran's story provides a powerful counterargument.

Thanks for covering this, Hamlet.

[abde alaziz]

life

[Dee Darwin]

Dance on girl, dance on♥

[Astaroth]

Thats true, even I copy my avatar ao and dances in rl, so interesting

[Armanunderpin]

The way you intertwined the personal journey of the Parkinson's patient with the therapeutic possibilities of Second Life was truly touching. It's a testament to the power of technology to transcend its initial purpose and become a force for good.

[Armanunderpin]

The potential for Second Life to be a therapeutic space for Parkinson's patients is mind-blowing, and your detailed exploration left me with a mix of amazement and hope. Your knack for making complex concepts accessible is a gift, and it's evident you're not just reporting; you're an ambassador for the possibilities that tech holds in improving lives.

[Ervin Doyle]

I feel so good after seeing you mam you play a game its very good for you for change you mind in disease these games all time my favorite Peach Essential Hoodie this hoodie is for Men's and Women's