‘Mother’ Jones

“One of the problems with living so long is that you collect too much stuff,” says Dr. Margaret Jones, pulling yet another photo album from a stack of albums, books and binders in her closet.

She walks carefully to the bed, plops several albums onto the bedspread and lifts the cover of one.

There she is just out of Cornell Medical School in 1933, a slender beauty with a direct, honest gaze--the same look of intelligence and interest you see in all of her photographs.

Could she have known then, standing in a garden in the sunlight, that her life would be so unique? That her career would be one of innovation and prestige? That love would elude her for many, many years? That she would not have the children she desired? But that she would garner the praise and admiration of so many others around the world?

It’s improbable that the future weighed heavily on her mind, standing before a photographer that day long ago. She was young, after all. And, like all young people, she had forever to do everything.

Today, at 93, living in her small house on a pretty street in Pacific Palisades, Margaret Jones is still that young girl in the garden. There is a future, people to meet, ideas to be shared.

And, as an advocate for people with cerebral palsy, Jones believes there is still much work to be done. That’s why she hitches a ride to UCLA every Wednesday to volunteer her services at the Center for Cerebral Palsy’s weekly clinic.

Working the examining rooms, she can revisit old patients, contribute her “two bits” on new cases and nurture her intense desire to keep current on cerebral palsy, a complex disorder that results from damage to the developing brain, particularly the areas related to motor coordination. The hallmarks of CP include difficulties walking, controlling the limbs, swallowing and speaking. The disorder ranges in severity; some CP patients cannot communicate or care for themselves.

It takes a special kind of medical professional to work with the complex problems of CP. And it takes someone like Jones to leave a mark on the field.

“I saw a need,” says Jones of her 65-years-and-still-going work with cerebral palsy patients. “When there is a job to be done, I do it.”

Says her friend Carol Hurley: “She comes from good, sturdy, Maine stock. She is of the wear-out-don’t-rust-out school. And that’s what she’s doing.”

The clinic is bustling this morning, and Jones seems delighted to be part of the scene. It’s a wonderful thing to be appreciated when you’re 93.

“Margaret keeps us on our toes,” says Dr. William Oppenheim, UCLA’s head of pediatric orthopedics.

The Wednesday morning clinic was founded by Oppenheim and pediatric neurosurgeon Dr. Warwick Peacock in 1994 because they believed that CP children needed a place where doctors, nurses and physical therapists with a variety of specialties could work together to evaluate all aspects of an individual’s case.

Jones, who had retired from UCLA in 1972 after 17 years in pediatrics, had kept up with advancements in CP but felt that adult patients--many of whom had been her patients as children--had nowhere to go to receive comprehensive care. She called Oppenheim and Peacock.

“I asked them to consider opening the clinic to all ages,” Jones recalls. “I worked with children for so long that the children all grew up. There was no specific place to treat adult CP patients in the United States; nothing has been developed for them. So I was looking for an opportunity to do something for them.”

She was surprised when Oppenheim and Peacock not only said yes but asked her to join the staff.

“When you have an older, female medical person talking to younger doctors, you don’t expect they’ll pay too much attention to you,” Jones says.

Oh, but they do.

On this recent morning, Oppenheim and Jones are having a polite but direct debate centering on 2-year-old Brenda Gonzales, who is severely affected by CP. The child stiffens in the arms of her mother, Juanita. She moans, and Jones reaches over to stroke her hair and massage her neck. Oppenheim has already made some progress in treating Brenda so that she can sit up in a wheelchair. He is pleased. But Jones is concerned about the child’s labored breathing and wants her to undergo a consultation for a type of brain surgery that can sometimes help CP patients.

Oppenheim resists at first. But Jones persists with her argument.

“I think you can do more,” she tells Oppenheim.

He relents and agrees to send the family for a consultation.

He asks Juanita Gonzales: “Is this what you want?”

She nods her head vigorously, her face brightening.

Oppenheim moves to the next case, muttering: “Margaret has a way of exerting her influence.”

The interaction is typical of Jones and her insistence on pushing for solutions. In the field of CP research, she is credited with recognizing the need to treat infants early with daily therapy. She also gave voice to the philosophy that care of CP patients should be comprehensive, addressing all symptoms in an attempt to improve the patient’s quality of life.

“The clinic was started by two surgeons. But there is a lot more to CP than surgery can solve. Margaret understands this,” says Dr. Erica Hassan, an adult rehabilitation doctor with the clinic.

Oppenheim concurs: “She is the pioneer in this field. She keeps us on our toes and is constantly prodding us to do more.”

Her influence has reached beyond UCLA, say those who know her. In March, the UCLA Center for Cerebral Palsy held the Margaret Jones Conference on Current Issues in Cerebral Palsy, honoring her work in the field.

“She is the most wonderfully vibrant individual you would ever want to meet,” says Dr. Gerald Levey, provost, medical sciences, and dean of the UCLA School of Medicine. “She has a great deal of energy. She keeps up with her field. And she still has that special touch that is required of all great physicians.”

Jones’ documentation of the welfare of CP patients as they age is a rare contribution to the field, he adds.

“The work she is doing in that area is quite significant. She is unearthing a great deal of information on the functional status of adults that she had seen in childhood. It’s rather unusual to be able to do that,” Levey says.

And, earlier this month, the United Cerebral Palsy / Spastic Children’s Foundation of Los Angeles and Ventura Counties presented her its first Lifetime Achievement Award.

“Everyone I met in the field, somehow, Margaret Jones has reached out and touched,” says Ron Cohen, executive director of the foundation. “If you think of a family tree, she is like the trunk of the tree and her influence spreads out.”

While the primary approach to CP is to alleviate spasticity and improve movement, Jones obsesses as well over a patient’s sensory functions, eyesight, feeding ability and psychological status.

She is famous for an experiment in which she mixed barium, a contrasting agent used to highlight tissue in X-rays, into chocolate brownies to permit a detailed X-ray analysis of lip and tongue motions while chewing. Children with CP often have swallowing abnormalities and some require feeding tubes, a solution Jones dislikes.

“Feeding is something that needs a lot more attention. You can’t just put a tube in and say you’ve done all you can,” she says.

It is her attitude of striving to offer patients the very best that has most endeared Jones to her many patients and their families.

Mary Ann Glicksman first brought her son, John, to see Jones 26 years ago when he was an infant.

“She was the person who identified what his needs were,” Glicksman recalls. “She set us off in a direction that has been nothing but up.”

Today, John Dugannes is a junior at the California Institute of the Arts. He uses a computer to communicate and his chin to guide his wheelchair. The family considers Jones a dear friend.

“I have a hard time thinking of John as her patient,” Glicksman says. “She is a friend and someone we look to for advice and support. There was never a sense with her of ‘I’m the doctor, and this is what you should do.’ She is there to serve.”

*

It was the desire to help other people that led the blue-eyed Margaret Jones--a smart, independent Radcliffe chemistry major--into medicine.

She worked on her master’s degree and taught at Vassar for two years after Radcliffe, but found Poughkeepsie to be “a real hick town” and accepted a job as a research chemist in New Jersey. That job--making soap--didn’t interest her either. But she was able to save $1,000.

“I always wanted to get a boat and sail up the Maine coast. Or I felt I should work with people. So I decided to go to medical school,” she recalls.

She graduated from Cornell Medical School in 1933 and, after an internship, landed her first real job at the State Department of Public Health in Wyoming. Part of her duties included care of what were then called “crippled” children, which led to her interest in cerebral palsy.

An avid outdoorswoman, however, she had other reasons for heading west.

“One of the reasons for going to Wyoming was the song, ‘Out Where the West Begins,’ ” she says, chuckling. She developed a lifelong love of hiking, rock climbing and mountaineering.

She tired of her administrative duties, however, and joined a pediatric practice in Los Angeles in 1943. About six years later she opened her own practice in Glendale and soon started a nursery school for children with CP between the ages of 1 and 3.

In the years that followed, Jones rose to the leadership ranks in the field of CP treatment and research. She was fulfilling her dream of working with people. But her life was not what she had envisioned while she was in medical school.

“I had expected to get married and have some kids. But it was not to be,” she says. “In medical school I went with a classmate. I had thought that we would get married, but his family wouldn’t support him financially through medical school if we got married.”

The relationship ended, although Jones remained hopeful that she would meet Mr. Right someday.

She did--at age 84. Jones and Dr. Adrian C. Kanaar, 78, a former surgeon in the British Army, married in Pacific Palisades in 1989.

They were married for four years before Kanaar, who had been ill during the last year of his life, died in 1993.

“She looked so sweet in her bridal gown and her train and veil. She carried a bouquet,” says Glicksman, one of the many wedding guests. “They had such a short time together. But she took care of him without looking for any sympathy. And after he died, she went on with her life.”

Her marriage was a late but profound blessing, Jones says. Kanaar’s only son from a previous marriage lives in Pacific Palisades and provides Jones with family ties. Her own two siblings are deceased.

As for not having had children, she simply views that as a necessary sacrifice. She doesn’t totally agree with today’s trend of single women rearing children alone.

“It’s hard enough to raise a child in a so-called normal two-parent family. [Single parenthood is] not something to do if it can be avoided,” she says.

*

But “before she goes,” as Jones puts it, she will leave something to the patients who were, in essence, her beloved children.

After her husband’s death, she created a foundation dedicated to youth and to assisting people with CP. The foundation supports some programs at Widney High School for the physically challenged and grants awards for volunteerism at Los Angeles-area schools.

Her ultimate goal, however, is to establish a fellowship at the UCLA Center for Cerebral Palsy to foster her belief in comprehensive CP care.

“I want to start getting people interested in the multidisciplinary approach,” she says. “There really needs to be an emphasis on looking at the whole picture. If we can get a fellowship established, maybe this philosophy can be spread around.”

The foundation is exploring ways to raise the $250,000 needed to fund the fellowship, says Hurley, a board member.

*

Jones’ vision is about gone now. She lives in one room of her bungalow in Palisades, furnished with a large-screen television and two automated reading machines. A roommate cares for the rest of the house.

She recently abandoned exercising on the treadmill on her porch because of heart problems, although she does some stretching each morning for about five minutes.

She is upbeat. She has not escaped all of the ravages of old age, but she has avoided the self-pity that sometimes overtakes people in their waning years.

There will be no waning years in the life of Margaret Jones.

She flips on her reading machine to scan in pages of a book that will then be converted to audio. A tape recorder sits at arm’s reach for dictating memos. A schedule of her appointments this week lies open on her desk.

Jones concluded long ago: “If you sit around and don’t do anything, you just go downhill.”

(BEGIN TEXT OF INFOBOX / INFOGRAPHIC)

Dr. Margaret Holden Jones

Claim to fame: Pioneer in the treatment of cerebral palsy.

Back story: Born in Maine. Lives in Pacific Palisades.

Family: Married in 1989 at age 84 and widowed in 1993. One stepson.

Passions: Medicine, hiking, reading.

On being one of a handful of women in Cornell Medical School from 1929-1933: “The male genitals and urinary tract was the one thing that [women] didn’t get any training on. But otherwise my [male] classmates were very congenial.”

On meeting her husband-to-be in 1988: “Sparks flew.”

On why she keeps working: “I’m interested in the new treatments and techniques and also what happens to people--what kind of outcome they have over the years.”