The Patient Blogger: When illness strikes, online communities often offer the best catharsis
BY TAYLOR BARNES
tbarnes@MiamiHerald.com

STEVE MITCHELL / AP

Dennis Neville, who has Lou Gehrig's disease, can connect on the Internet with others who share his disease.


``I moved home with my parents. At least I am fortunate enough to have them. It's just weird. . . I should be taking care of them.''

In 2002, Dennis Neville quit his job as a massage therapist because one of his fingers stopped working.

The next year, he was diagnosed with amyotrophic lateral sclerosis, commonly called Lou Gehrig's disease. Today, Neville, 39, only gets out of his home in a motorized wheelchair.

While the degenerative disease has left him unable to type on a keyboard -- he uses a mouse to select letters onscreen -- it hasn't stopped Neville from blogging about his condition. He stays up until midnight in his Sebastian home, updating his MySpace page and surfing on PatientsLikeMe, a health networking site.

He connects with 20 to 30 buddies in chatrooms, many of whom share his illness, and regularly posts questions: ``How do people brush their teeth, take their showers . . . how do you hold your head up?''

''We can really relate more than anybody,'' Neville says.

''Those are people he's closer to even than family,'' says his dad, Jim Neville, 70.

Limited physical mobility is one reason that a growing number of people with serious illnesses are turning to the Web. They set e-mail alerts for the latest research, read first-hand accounts of treatments they could try, and start blogs and join chatrooms, sharing in a sort of virtual catharsis.

For someone who can't easily go out to lunch with friends, chatting and writing online ''can create a little normalcy,'' says University of Miami psychiatrist Eva Ritvo. ``We are by nature a social being, and we like to share information.''

Writing online also gives patients or caregivers a chance to open up, to tell their online friends what they don't share with their loved ones -- their fears, their burdens, their moments of doubt. Speaking volumes about personal worries to a close friend or family member can stress a listener, Ritvo says, whereas writing online doesn't have to be personally directed.

``That's what's really in vogue right now . . . telling our most intimate secrets in the most public forums.''

``Mom was having trouble breathing earlier today at 5:00 pm.''

As Annmarie Fletcher watched her mom die of bone cancer last November, she used an online journal to share medical updates and to order her thoughts at the end of the day:

''My family is truly blessed with all of you who love us, and keep praying and thinking about us,'' reads one blog entry.

``There is a saying that God doesn't give you more than you can handle!! Well tell God to STOP giving me so much to handle!''

``Mom passed away this afternoon. She is out of pain and at peace now.''

Anyone could read the journal, be it a distant cousin her mom hadn't seen for decades or a Web-surfing stranger. Fletcher, 41, of Fort Lauderdale, chronicled her mother's illness, starting a week and a half after her diagnosis and, two months later, posting a eulogy given at her funeral.

''Writing this was very cathartic,'' Fletcher says, thumbing the print-out of the journal and sitting in the hospice where her mom, Barbara Powers, passed away. Powers had been Broward's AIDS/HIV coordinator for the Archdiocese of Miami.

``It kind of helped me collect my thoughts from what were extremely chaotic, mind-numbing days.''

At first, Powers didn't want Fletcher to start the journal ---- ''When you get that kind of diagnosis, you don't want to tell too many people, because it's hard enough to deal with it,'' Fletcher says.

But she decided it was a useful way of disseminating information. As Powers' hands became feeble and she no longer could sit at the computer, Fletcher printed out the pages of comments from friends and family to read to her.

''I didn't know so many people cared,'' Fletcher remembers her mom saying.

''How many of us know how truly loved we are before we die? I think my mom did,'' she says.

``I am far from feeling as good as I was in January.''

Stuart Schlossman uses his blog, which he calls ''MS Views and Related News,'' to display recent news articles and updates on Multiple Sclerosis research.

When he was diagnosed with MS in 1998, Schlossman began going to chatrooms with others who had his condition. He started working less and quit his job in 2003, and says it left him with time to fill.

At first, he got a dog. But training the pet only passed the days for a while, so the Internet-newbie started exploring new territory, eventually setting up a blog with MS resources.

''When I first started doing that stuff, no, I was not Internet savvy. I was afraid of the Internet actually,'' he says. ``But when I stopped working, what was I going to do? Aside from taking care of my dog, I had to start playing on the Internet a lot.''

In April, Schlossman wrote a series of personal testimonies about his decision to take a five-week medication ``hiatus.''

''I know that my doctor will not be happy to hear that I stopped taking my medication when I did. He might be hearing of it first-hand, as I know that he reads my e-newsletters and might even now be reading what I post to this blog,'' Schlossman, of Cooper City, wrote in his first post about the hiatus.

The meds, designed to slow the progression of his illness, had made him dizzy and caused him pain, he says. And his brother-in-law was coming to town and Schlossman wanted to play golf with him.

Initially, he says he felt ''invincible.'' But Schlossman soon took a spin downward, unable to drive home from an MS gathering in Miami because of intense vertigo. His condition worsened, forcing him to use a cane for short distances.

Schlossman became convinced of the value of meds and now wants to share that with others.

''I felt that people needed to know,'' he says. ``I don't keep things to myself.''

``My problem is getting my grocery shopping done and if it takes the electric wheelchair cart to do it, then so be it. If people choose to stare at me, so be it.''

Sharing what has traditionally been considered private medical information online is the purpose of PatientsLikeMe.com, which started in 2006 and now has 16,000 users, according to Ben Heywood, the site's president.

Gail Gutierrez, 50, has had MS for 21 years. She's essentially homebound with her bad vision. She discovered the site two months ago -- and now goes on every day, she says, after her morning coffee.

''My mood has changed,'' she says. ``I'm happier somehow knowing that there are other people out there who understand exactly what I'm going through -- and care!''

Gutierrez, who lives in the Hammocks in West Kendall says therapists didn't understand her concerns, since they didn't have the illness themselves.

But the online community has comforted her in ways others couldn't. ''You have many people here to help you. Just add your post and we'll be there for you,'' she says.

``Let there be a cure in 2008!''

Computer use is getting more difficult for Neville, nearly six years after quitting his job as a massage therapist. Lou Gehrig's disease affects neurons in the brain and spinal cord. While a person's mind remains sharp, in its later phases the disease can cause paralysis.

''I can still click my mouse, but it's getting harder,'' Neville says.

He's already ordered a head mouse, which uses a reflective dot on the forehead to navigate the screen, for when his hands weaken.

For now, Neville won't let the illness stop him from chatting with friends online and updating his blog.

``I don't know what I would do without it, really.''

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