The nurses threw him out of the room: Joyful living with Multiple Sclerosis

Debbie Purdy married well, to a joyful Cuban jazz violinist named Omar Puente. It was 1995 – the same time she was diagnosed with multiple sclerosis. She has primary progressive, rather than relaxing-remitting, MS, meaning that her condition is inexorably worsening.

They have adjusted together to the changes in her body. If she had not been in a wheelchair, if her hands had not been shaking, if she had not been speaking matter-of-factly about things like loss of bladder control, the painful swelling in her feet and how hard it was for her to brush her teeth, it would have been difficult to believe that she was ill at all. She is that joyful.

Not long ago, a team of nurses came in to install the hoist that helps her in and out of bed. Her husband Omar “was laughing,” she said. “The nurses threw him out of the room when we were trying it out, because he was acting like it was a sex toy.”

Omar says, “I’ve seen the whole process, from when she was a very strong woman with a wonderful big bottom and strong legs, to using a walking stick to using a wheelchair. She is still articulate and enthusiastic and full of life.”

Advice: Live with humor, as joyously as you can with the time you have, as Debbie and Omar do.

Read a story of a very different way a person is living fully with multiple sclerosis .

Thanks to Sarah Lyall for the source article in today’s NY Times.

But I am living in a new world: Accepting multiple sclerosis

Ruth Just's story:
I have had multiple sclerosis (MS) for 35 years. I have lost one ability after the other. I am now completely dependent on the care of other people.

Over the years I have learned that although I can't choose not to have it, I can choose my attitude about living with the disease.

The first thing I must do is accept MS. I must accept it not just once but over and over again. Whenever anger, grief and envy rise in me – when I see what other people can do and what other people have – I must remember that I have decided to accept MS.

When my whole family goes to Germany and I have to stay home, I must remember my decision to accept MS. Every time I have to spend several months in bed healing a pressure wound and think what fun it would be to go on a bike ride with my sisters, I must remember my decision to accept MS.

I struggle and I groan under the weight of this responsibility. But I am living in a new world. New opportunities abound. And I'm amazed to find that I feel very thankful for this new world.

MS has created a special bond between my husband and me. He has stayed with me and offered me his love and support through all these years. Would I have seen the fine mettle of this man were it not for MS?

Many of the people who take care of me are new immigrants from African countries. Getting to know these people has been the most enriching experience of my life. They are part of my new world. We encourage each other, and our friendships are rich.

My diminishment has also made me a member of the MS community. The many fine people I have met inspire me with their courage. We share each others' joys and sorrows. I need these people and they need me.

Advice to people with such diminishments from a chronic illness: Read the book that has guided Ruth: On Hallowing One's Diminishments, by John Yungblut.

Read another multiple sclerosis story.

Thanks to Ruth Just for her source article in the November/December issue of Neurology Now.

He was stuck in quicksand: Building knowledge about multiple sclerosis

Todd Small was stuck in quicksand again. It happened, as always, at the Seattle machine shop where he worked. His shift complete, Todd was making the 150-yard walk to his car, when he realized that his left leg was sinking deep in the stuff. This happened nearly every day now. His Nikes still looked normal, firmly planted on the concrete floor. But he was stuck. His brain was sending an electrical pulse saying "walk," but the signal snagged on scar tissue where the myelin layer of insulation for the nerve fibers had broken down because of his multiple sclerosis. He felt up to his waist in quicksand.

Doctors usually treat this with baclofen, a muscle relaxant. Every day for 14 years, Todd had taken a 10-milligram pill. He explained, "My neurologist always told me if you take too much it will weaken your muscles. So I never wanted to go over 10 milligrams." It didn't seem to have that much effect, but he carried on as best he could.

He would have continued just as he was had he not logged on, last June, to a web site called PatientsLikeMe. There, he listed his symptoms and treatments, including other medications. The web site revealed that 200 or so other patients like him were taking a range of doses of baclofen, up to 80 milligrams, and are doing fine. "So it hits me," he recalls, "I am not taking nearly enough of this drug."

A few days later, he asked his neurologist to raise the dose; now he takes 40 milligrams daily. While his foot drop isn't cured, he no longer feels he's sinking into quicksand while walking to his car.

There are more than 7,000 Todd Smalls at PatientsLikeMe, with diseases like MS, Parkinson's, and AIDS. Each one contributes his or her experiences, and quantifies their dosages and symptoms. All this is compiled over time into bar graphs and progress curves, and it's all open for comparison and analysis by the patients.

These are not typical patients. They are co-practitioners who are treating their conditions and guiding their care, with their doctors – with profound implications. "People who use it will live longer; those who don't, won't," says Jamie Heywood, the co-founder of PatientsLikeMe. "That's evolution."

Advice to people with MS, Parkinson's, and AIDS: Consider using PatientsLikeMe. Discuss what you learn there with your doctor.

Browse for related stories in the index at the very bottom of this page, or read a story on an MS hero.

Thanks to Thomas Goetz for the source article in today's New York Times Magazine.

He was a forward observer: An Agent Orange victim and plaintiff

Stephen Zardis was born in Malden, Massachusetts, and attended Boston College for two years. Then he enlisted in the U.S. Army, and served in 1968-69 as a forward observer near Cambodia in an area saturated with Agent Orange, the chemical used to destroy the jungle plants that concealed the Viet Cong.

Several years after his honorable discharge, he was diagnosed with atypical multiple sclerosis. Other Vietnam vets told him of their strange and rare health problems. His research convinced him Agent Orange was to blame. He became the director of the Massachusetts chapter of Agent Orange Victims International, spreading the word about the origin of the veterans’ health problems, and helping ailing veterans find answers and restitution. He became the lead plaintiff in the class action lawsuit filed in Federal District Court in Boston in 1979. The class won a settlement in 1984.

His health continued to deteriorate, and he passed away on Thursday, at age 59.

"I've learned through my own medical history that I can’t take it with me. So I wanted to do something with it, something that would have a meaning and a purpose," he said in 2003, explaining why he had donated $1 million to his alma mater, Cathedral High School in Boston’s South End.

Advice to victims: Find other members of your class, and learn and advocate with them.

Read another of our patient advocate activist stories, or read Tom Long’s obituary on Stephen in Tuesday’s Boston Globe.

He’s engineering his own cure: A Multiple Sclerosis Patient Advocate

He learned engineering at MIT, and then launched three high-tech start-ups. That was before he was diagnosed with Multiple Sclerosis. This is Art Mellor’s story:

Like for most people, it was good news when I got diagnosed with MS, because the other thing it could’ve been was a brain tumor.

Being an engineer, I thought, I have this problem; how do I stop it? I got a bunch of books at the library, which said, basically, You’re gonna be a cripple, here’s how to deal with it. Then I went on the Internet, and it seemed to be the same paragraphs from the National MS Society pasted onto every web page. I complained to my neurologist; he gave me textbooks and articles, and I read them. I started to get scared, because none of them had analysis or synthesis of findings; instead, it was all description. So much of medical research is description! - not about coming to a conclusion. When I realized that we’ve really not learned any answers to key, critical questions in MS, I didn’t believe that I was reading it correctly. I met with my neurologist and MS researchers, and they all confirmed, No, you’re reading that right. So at first I thought I’d get a Biology degree and work on the tough questions. Then I realized the problem wasn’t that more smart people were needed in the lab; there are a lot of smart people in the field; it was a management problem—it’s about orchestrating the components of the system properly. I realized that that’s what my background is about—getting a bunch of people together, deciding on the right things to do, and raising money to make it happen. So I quit my job, and I met with my neurologist a bunch of times about what to work on. Our conclusion was that the CAUSE of the disease was the most important underserved area.

Since start-ups have been my whole career, the thought of starting one wasn’t a detriment to me; that was the easy part. It was hard to do it the first time, but this would be my fourth.

So I set up the Accelerated Cure Project for Multiple Sclerosis. We’re a nonprofit, based in Waltham, Massachusetts.

I’m proudest at getting a six-center IRB [hospital Institutional Review Board] approved study running. Researchers are collecting samples of blood and data from people with MS for the repository. Now I’m starting to talk with researchers about the studies that will be done on it.

Basically, the repository we’re building is a platform. Researchers now think that for someone to get MS involves a genetic susceptibility and an environmental trigger. So we have to be able to study all of them, on the same people. That’s hard to do because MS is so rare, so it’s expensive to collect data, and because scientists are so specialized. By having a repository, we can get a geneticist to do genetic screens on some samples, and get a virologist to study their viruses, and a toxicologist to study environmental exposure in the same people, and then we can join their findings. We can look at the genes that are associated with those people’s viruses, and relate this to those same people’s environmental exposure.

It’s like we’re laying railroad tracks. Scientists are like a train that can go 300 mph, but there are no tracks for them to run on at that speed. They can’t really build the tracks themselves —it’s expensive, administratively difficult, and not publishable. The government can’t make MS a big priority because MS is not prevalent, not fatal, and not contagious, so it’s pushed to the bottom of the barrel, otherwise.

Art is an engineer, not a poet, so when I applauded his vision, he corrected me: "The vision is only in the doing of it."

Advice to MS patients: Forward this to your friends. Read more at his web site, and consider giving blood samples to the Accelerated Cure Project for Multiple Sclerosis.

Read a story about an MS simulator.

Suck it up: A simulator of Multiple Sclerosis

The woman in the booth puts on headphones, and hears a woman’s voice and the sounds of everyday life. At the store, she opens her wallet and the screen suddenly goes blurry, from a Multiple Sclerosis attack that prevents her from distinguishing between her $20 bills and $1 bills. She tries to pick up a cup, but it falls out of her hand, with the drop simulating the sudden loss of coordination that MS can cause. Her fingertips vibrate and tingle insistently.

With a video, headphones, and two wobbly treadmill tracks, the machine mimics an MS attack. The RJO Group designed the simulator, which was funded by Biogen and Elan Pharmaceuticals.

Art Mellor, an MS patient who runs the Accelerated Cure Project for Multiple Sclerosis, went through the simulator on Monday, at a conference of the American Academy of Neurology. “That’s what it’s like,” he said. MS patients often don’t have outwardly detectable symptoms and must depend on doctors believing their descriptions. Some patients, he said, get “the equivalent of ‘Suck it up,’ or ‘Oh come on, it’s not that bad.’”

The marketing theory behind the simulator: Doctors will be more empathic—and will treat the disease more aggressively – and that’s spelled m-o-r-e d-r-u-g-$.

Advice to MS patients and their advocates: Ask your neurologist if he or she has experienced the simulator, which is now touring conferences.

Read another MS story, or read Stephen Heuser’s source story in the May 2 issue of the Boston Globe.

Her Internet research said it could help: Patient education

Susan Arazy has multiple sclerosis. In January, she emailed her physician, Dr. Moore, wanting his opinion on whether early intervention with Avonex would slow her disease's progression. Her Internet research said it could help.

During the appointment, her doctor read information on several web sites, confirming what Susan had found. He deemed it worth asking a specialist, and arranged an appointment with a neuro-opthalmologist.

Susan had educated herself and asked her doctor's opinion. Her doctor had considered it thoughtfully with her and promptly supplemented his own knowledge with the most up-to-date information.

Advice to patients: Educate yourself. And get a physician like Dr. Moore.

Read another MS story, or read another example from the Wall St. Journal source article.

No more “diagnose and adios” for “Laverne and Shirley” star: MS patient education

David Lander acted as Andrew “Squiggy” Squiggman in the 1970s sitcom “Laverene and Shirley.” He’s still laughing, even 23 years after being diagnosed with multiple sclerosis. In those days, there was nothing doctors could do about MS, so doctors’ treatment was “diagnose and adios.” Now, many treatments are available.

“My doctor had painted a fairly bleak picture of the disease, even going so far as to say I probably wouldn’t walk again,” he said. Now he walks slower—and is a scout for the Seattle Mariners baseball team—and for the handicap accessibility of ballparks.

Speaking to MS patients is one of his greatest joys. He adds, “There’s a great strength that we derive from each other. Support groups offer MS patients an invaluable resource.”

“Wherever the chips may fall, if I fall with them, I will do so gracefully, laughing.”

Advice to friends and families of patients with MS: Take ‘em out to the ballgame—but check first for the ballpark’s accessibility for handicapped people.

Read another story about a celebrity spokesperson , or read Linda Childers’ article, “Fall Down Laughing,” in Neurology Now’s Jan./Feb. issue.