Murthy as a child. Photographs courtesy of Sai Padma Murthy.
Consider the significance of the number 42. It is the angle in degrees at which a rainbow appears. It is the “Answer to the Ultimate Question of Life, The Universe, and Everything,” according to The Hitchhiker’s Guide to the Galaxy. And 42 is the number of years from 1972—when Indian-born Sai Padma Murthy, at 45 days old, contracted polio—to March 27, 2014, when the World Health Organization (WHO) certified India as polio-free. Murthy, whose given name translates to “Enlightened Lotus,” was six weeks shy of meeting WHO’s then-guidelines to receive the polio vaccination when she was diagnosed with the virus.
“It all started with a high fever, and by the time they took me from my native village to the nearest best hospital in Visakhapatnam, South India, [a one-and-a-half-hour drive away], I was completely paralyzed due to the polio, and my voice was gone,” she says.
Her physicians had no means to treat her paralysis, she says, so they gave her a series of 52 shock treatments. “My mom said that even the nurses used to feel very bad about it, and they couldn’t bear a…baby writhing in pain from the shock treatments.” Those shock treatments, however, are attributed for restoring her voice when she was eight months old and allowing her to regain upper-body movements afterward, albeit with limited use of her arms and hands.
Thus began what Murthy, who now lives in Visakhapatnam, calls “her journey of rehabilitations and transplantations” to restore some function to her legs. She has had 17 surgeries for foot drop, tendon transplantations, and tendon releases. She was in and out of hospitals throughout her childhood, did years of physical therapy, and also wore spinal bracing and KAFOs—first made of iron and then aluminum—which allowed her to walk in a limited and robotic manner with the use of crutches. “They tried all that was available in India,” she says.
Because Murthy’s hands are very weak and her hips are also affected by polio, she involved her trunk muscles to walk, which contributed to the development of kyphosis and scoliosis. She was not a candidate for spinal bracing, so in 1996, Murthy underwent spinal fixation surgery to correct the S-shaped curve of her spine and a collapsed lung. “The surgery was good,” she says. “[I]t corrected my spine to the greater extent that they could.” However, the curvature was so bad the surgeon had to remove three ribs.
The surgery also came at the expense of Murthy’s mobility. After the surgery, she could no longer walk without a lot of pain and fatigue, so she has been confined to a wheelchair ever since. “I’m trapped in a country that is not accessible at all for a wheelchair…,” she says.
Finding a Purpose
In the months leading up to the surgery and during the two years it took her to heal, Murphy says she was in a dark time of her life, clouded by pain, medication, and a life of immobility. “I was so depressed and thought of calling it quits. I couldn’t go to work because of my spine [and] my health. I didn’t know when I would be able to sit, let alone walk.”
She says her father suggested that she find work helping others. “He said, ‘Service is health. Why don’t you try to do something for the lesser privileged using your brain and your limited mobility?’” She found work with a Lions Club-based nonprofit organization and pursued an education in accounting and law. She has now been a full-time advocate for people with disabilities for 20 years, and in 2008 founded Global AID (Ability in Disability), a nonprofit that, among other things, focuses on projects related to mobility, accessibility, and employability of individuals with disabilities. Global AID also develops sustainability projects that provide healthcare and counseling services to people with physical and mental challenges and the elderly, and operates hostels for underprivileged children to educate them and help them attain financial independence in adulthood.
“We have 60 boys and girls in the hostel, and the remaining 300 are in the tribal hamlets where we are working,” she says. “I have been running this hostel and the tribal hamlets education program with the support of India Development Services, the University of Wisconsin-Whitewater, and some Indian donors for the past seven years.”
In India, health insurance for people with preexisting conditions is unaffordable, Murthy says, and her family and the private donors have provided financial aid as she seeks orthotic solutions to regain her ability to walk. “I never worked for money nor had an active career due to my surgeries and disabilities,” she says. “My parents supported me financially, and now some part of the rehab is paid by my donors who have immense faith in my ability to lead many projects in India.”
DynamicBracingSolutions
Murthy attended a conference in the United States in 2007 where she met Marmaduke Loke, CPO, founder of DynamicBracingSolutions™ (DBS), and began following his work. She later came across a story in the February 2010 issue of The O&P EDGE, “Dynamic Brace Beats Post-Polio Boomerang,” featuring Loke and several patients with post-polio syndrome (PPS) who had benefitted from his custom orthotic solutions. With funding secured, Murthy e-mailed Loke earlier this year and submitted a video so he could perform a longdistance assessment of her condition.
“I studied her video frame by frame and was able to provide her an assessment and how I might be able to help her,” Loke explains. “She then traveled to California in June, and I spent two days with her. The first day, we did a full assessment, which included her limited standing and walking on our ProtoKinetics Zeno Walkway, her muscle strength, contractures, joint laxities, compensatory patterning, and evaluation of her segmental bony alignment in three planes. The second day…we measured and took triplanar segmental casting for two carbon composite KAFOs.”
Murthy stayed in the United States until her braces were fabricated, returning to DBS three weeks after her first visit for fitting and initial orthotic training, Loke says. “The first thing we had to do was teach her how to stand more upright and how to harness gravity to assist her. She also had to learn how to trust her new braces that enable her to obtain a more efficient position.” He explains that motion occurs simultaneously in the sagittal, coronal, and transverse planes. “The ability to walk efficiently is based upon the proper alignment of the bones of the feet, which in turn affect the alignment of the ankles, knees, and hips,” states the DBS website. “An effective brace must provide for triplanar management of the foot and ankle while providing triplanar support for weak muscles.”
Murthy was able to hug her husband while standing up for the first time.
After a few days of training with the DBS KAFOs, Murthy was able to stand upright, otherwise unassisted.
“[It was the] first time after 20 years [that] I stood up on my own,” Murthy says. “I put my hands on my waist and stood still like that for a few seconds.” Indeed, she says, it was also the first time she was able to hug her husband of almost eight years while standing.
Murthy says she has two things going in her favor: “200 percent support of my husband, Anand, and an intense desire to walk with him in a real sense.”
A Long Road Ahead
Murthy has a long road of training ahead of her. “Her job is to improve her range of motion, which is more important than muscle strength for walking,” Loke says. She also must learn to use the braces’ support and gravity to walk by moving one foot forward and then shifting her pelvis over the forward limb with all of her weight. “This takes trust to fully commit to each limb and let the other leg relax and flex forward with gravity assisting the limb to swing forward, using a slightly exaggerated wiggle motion to then glide her pelvis forward over the other limb,” Loke says. “As she learns to do this move forward and backward, it’s like doing a cha-cha-cha,” he says. After mastering the cha-cha-cha maneuver, Murthy can add additional steps—which she is already doing.
“Orthotic education and learning how to utilize the technologies properly is so important,” Loke emphasizes.
Loke fits Murthy with her new orthoses.
Loke says that it will be a tedious process for Murthy to learn how to walk with the KAFOs, adding that his goal for her is that she eventually stands hands-free and simultaneously completes functional tasks such as preparing food, opening a door, and giving speeches, as well as limited walking. Toward this end, Murthy says she has an excellent support system at home; her husband is a yoga master who helps with her rehabilitation, and he supports her in “living an ideal and helping life.”
In July, a video was posted to Murthy’s Facebook page of her standing unassisted and practicing moving her pelvis. In August, a video was posted of Murthy practicing the exaggerated pelvic movement and taking the diagonal/sliding forward steps Loke describes, with a grab bar and desk for support. In November, yet another video was posted showing Murthy’s progress: She moves her pelvis and knees more freely; rises from her wheelchair and sits down more easily, albeit with the aid of a grab bar; and balances unassisted. These same videos were sent to Loke as will future videos so he can monitor her progress and work with her physical therapist remotely.
“My rehab goal is simple,” Murthy said in the initial video she sent to Loke. “I want to walk conveniently without fatigue even if it is a slow walking, and the chair…to car transfer should be relatively simple for me, as I can’t even lead a half-life in India from a wheelchair.”
Laura Fonda Hochnadel can be reached at .
