Living with a Disease of Exclusion

Dissatisfied with her respiratory condition, Gladys Swensrud investigated an alternative ventilator and convinced her HMO of its effectiveness to treat others.

Gladys Swensrud contracted polio in 1952 when she was 3 years old. To this day, she still has no idea where she came in contact with poliovirus. But growing up in a Quonset hut in the middle of an orange grove in Escondido, California, she’s certain she didn’t have to venture far to find it.

She remembers being totally paralyzed and placed in a hospital bed with iron railings in San Diego’s County Hospital. The bed faced a window so her family could peer back at her during Swensrud’s two-month stay. Her mother was the only family member allowed face-to-face contact, which was limited to 15 minutes, once a week.

She received the Sister Kenny treatment, which consisted of hot compresses and gentle exercise of the paralyzed leg and arm muscles. Warm bath dips were also part of her polio treatment while hospitalized. Rehab sessions to strengthen her weakened muscles continued at home until she recovered. She lived normally with little-to-no visual effects of polio until 2000 when she began to experience muscle and respiratory issues. Like many Post-Polio Syndrome (PPS) patients, she says she was not tested properly for her respiratory problems and was placed on the wrong treatment program. Unsatisfied, Swensrud relied upon the same drive and determination that enabled her to walk again as a young girl to research alternative treatments.

She discovered that using a bi-level (S/T) ventilator, one that provides pressure settings – higher for inspiratory and lower for expiratory for ease of exhalation – stabilized and improved her health. After working for three years to convince her doctors, Kaiser Permanente in San Diego adopted the treatment and created its Neuromuscular Respiratory Program, which is in the process of being expanded to Kaiser hospitals throughout Southern California. “There’s no doubt in my mind that the biggest misconception is that if you weren’t in an iron lung, you can’t have the respiratory problems that go with polio,” Swensrud says. “That is totally not the case.”

Comments

3 Responses to “Living with a Disease of Exclusion”

  1. Juan Jose says:

    Great Story !!!

    Thanks again Gladys for help Us.

    Your Mexicano Friend.

    Juan Jose.

  2. Juan Jose says:

    Thanks Gladys.

  3. Kathryn Coverston says:

    My story is almost an exact duplicate of Gladys, except my PPS diagnosis is new(1 yr) and I now have a recent diagnosis of
    Sleep Apnea and recommended by Kaiser San Diego to use Bi-level (S/T) ventilator which is costly($80/mo) and not covered by Sr. Advantage(Kaiser’s version of Medicare).

    I’m currently seeking any PPS/Sleep Apnea clinical trials or research projects that I can join so that my treatment is provided.

    I’m a 67 y/o unemployed female. Thank you for reading my story.

    Kathryn Coverston

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