Pam Cazzolli, RN | Canton, Ohio

EARLY ERA - 1970'S & 1980'S

The Nursing Dream

The inspiration for Pamela to become a nurse began at the age of four years old. She was admitted to the hospital following a post-tonsillectomy complication. During her two-week hospitalization, she still vividly recalls how nurses with white caps and smiling faces provided her with tender, loving care. From that time on, her dream was to become a nurse. During her early childhood years, her first “patients” were her dolls and siblings. At the age of 14, she served as a volunteer “Candy Striper” at Aultman Hospital in Canton, Ohio for two years. At Glenwood High School, she was a member of the Future Nurses Club. Pamela had always believed that her life's purpose was to become a nurse and care for the chronically ill. Eventually, her dream came true.

Pamela’s role model has always been Florence Nightingale, the founder of the profession of modern nursing. Inspired by Nightingale's dedication, Pamela has always endeavored to emulate the virtues that Nightingale established, and to apply those same virtues while searching for the best ALS nursing care practices. Those core values that Nightingale represented so well are still relevant today. They are the bedrock upon which the nurses of tomorrow will still be standing.

Decade of the 1970’s: Initial ALS Experience

In the early 1970’s, a neighbor and close friend of Pamela Cazzolli’s family was diagnosed with ALS. After starting on long-term breathing support, the patient was admitted to Molly Stark Hospital in Louisville, Ohio. He lived there for three years until he passed away from a complication. This was Pamela’s first close observation and involvement with a person with ALS.

On Sunday, March 3, 1974, while Pamela was serving as Head Nurse of the Skilled Nursing Division at a care facility in Canton, Ohio, she admitted her first ALS patient, using long-term mechanical ventilation. The patient was Judge John Rossetti, well known in the local community. Pamela will remember that day forever. The ALS patient had a tracheostomy and was totally dependent on a “respirator,” a huge, noisy, four-foot tall floor model machine, to maintain breathing and living. The patient was immobile and did not have the ability to talk. As Cazzolli was welcoming the patient to his new home, Dr. Packer, the patient’s pulmonary physician arrived. Dr. Packer declared that despite the diagnosis of ALS, the patient had “the potential for living indefinitely with use of the ventilator.” His declaration almost seemed prophetic.

Through meticulous round-the-clock care, the ventilator-dependent patient with ALS survived for years. Despite his immobility, the nonverbal patient indicated (through use of a communication board) that he was satisfied with his life and “happy to be alive.” Although living in a skilled nursing facility (SNF), the patient also had private duty nurse services. In the 1970’s, ventilator patients qualified for full time private duty nurse services. During that era, the Medicare healthcare system was still in it's infancy.

Soon after her first ALS patient came to live at the facility, Cazzolli admitted many more patients with neurologic disorders to the SNF’s newly established neurologic/ ventilator unit. Eventually, Cazzolli became Director of Nurses of the 125 bed care facility, one of the first SNF’s in Canton, Ohio.

Unknowingly to Cazzolli in that decade of the 1970’s her life-long career in nursing would evolve into a full time ALS care mission.

Early 1980’s: Caring for ALS Patients at Home

In March 1982, Pamela Cazzolli transitioned her career to private duty nursing. She had been invited to serve with a team of home care nurses to provide round-the-clock care of an ALS patient at his home. In that unique era, health insurance companies provided reimbursement for a private duty registered nurse to provide full time nursing services, even if the patient only required infrequent suctioning to clear secretions from the throat.

Over more than 14 months, Cazzolli learned to transfer her disabled patient singly, despite his immobility progression. This included transferring the patient in and out of his car, and on and off of his pontoon boat. She had to maintain his upper airway clearance as his bulbar impairment became progressively severe. Her duties also included meal preparation for safe swallowing and frequent suctioning of secretions from the mouth and throat. A feeding tube into the stomach was placed weeks afterwards. Through the ongoing need for suctioning, Cazzolli mastered the best practices for clearing the throat and keeping the patient comfortable as the patient lost his ability to swallow. Although the patient’s speech diminished, best methods were used to maintain his communication and to provide him with a quality of life until the end.

As his respiratory impairment progressed, the patient tried a Curaiss (chest shell), a negative pressure ventilator that was applied to his chest to assist his breathing. Although the patient used the device intermittently for several weeks to alleviate respiratory symptoms, the patient was no longer able to tolerate its use due to his bulbar impairment. The patient felt like his secretions were being forced down his lungs during the cycles of negative pressure. The patient, then, tried an “IPPB machine” with a nasal/oral mask for intermittent breaths of air. Again, the patient was unable to tolerate the administration of positive pressure air. Thus, he stopped using the device. Without the use of a breathing support aid, it was necessary for the patient to sit upright to breathe, day and night. The difficulty in keeping his head up was a challenge. Eventually, the patient made the informed choice not to use tracheostomy ventilation. Consequently, the patient passed away, as he elected.

Shortly after caring for her first ALS patient in a home setting, Cazzolli began private duty services for a second patient with bulbar ALS. The patient was a retired nurse and a WW II veteran who had previously been stationed in the South Pacific during the war. Cazzolli arrived each morning at 8:00 am, bathed the patient from head to toe, and administered passive range-of-motion exercises to every joint and limb. The patient was fed solely through her stomach tube and required frequent suctioning of secretions from her throat. Cazzolli noticed a striking difference between her two ALS patients. The second patient cried a lot, in contrast to Cazzolli's first home care patient, who laughed a lot. Afternoons were the second patient’s favorite times of the day, while she rested in her reclining power lift chair and listened to music from the Big Band era on her radio. On March 1, 1984, Cazzolli's second patient passed away from respiratory failure.

The Decade of the 1980’s: Birth of the ALS Care Mission

Pamela Cazzolli’s ALS care mission officially began on March 4, 1984 in Canton, Ohio, immediately after her private duty services ended. She knew that ALS care would become her life mission when she recognized that ALS was the most challenging of all of the neurologic diseases. ALS required uniquely comprehensive nursing management of ongoing problems, and yet the essential information on ALS care was almost totally absent from the literature. Cazzolli discovered that documentation of the best practices for ALS care, based on clinical evidence and experience, for achieving the best patient outcomes was virtually nonexistent. Therefore, Cazzolli made the decision to learn everything she could about the problems associated with ALS, and to search for solutions to the ongoing problems due to progressive disability and respiratory outcomes.

On Sunday, March 4, 1984, ALS became Pamela Cazzolli’s Assignment for Life given Sovereignty, as described by colleagues who heard Pamela’s account of the “divine” calling. Also, in March, Cazzolli was invited by the Visiting Nurse Society (VNS) of Stark County to speak on caring for ALS patients at home at their next ALS support group meeting. The VNS had previously established the local ALS support group in July 1982 by the request of an ALS patient, the late Debbie Barsch in North Canton.

On March 18, 1984, Pamela Cazzolli, RN, spoke at the ALS support meeting in Canton, Ohio. She later became the co-facilitator of the ALS Support Group of the Visiting Nurse Society (VNS) of Stark County with social worker, Joan Warren, MSW. In July 1983, Joan became employed by the VNS, after obtaining her Master’s Degree from the University of Connecticut. Thanks to the VNS’s capacity for publicity over a wide geographic region, the VNS acquired a large registry of patients with ALS.

Cazzolli began serving on the VNS team. Due to the efforts of the VNS in locating ALS patients, Cazzolli was able to visit many of those patients at their homes. During this era, she was able to personally observe that people with ALS were living long after respiratory failure due to the use of invasive or noninvasive breathing support.

At that time, the traditional method of breathing support was use of tracheostomy ventilation. Most people with ALS began its use during unexpected respiratory failure and emergency hospitalizations. Some people used noninvasive negative pressure respiratory aids with use of a chest shell (curaiss) and pneumobelt.

Based on her observations, Cazzolli felt compelled to begin an investigation of ALS patients using mechanical ventilation. She became aware that respiratory failure is an outcome of ALS, unless prevented or treated. She, also, recognized that if respiratory failure is the primary cause of death for ALS, then an investigation of respiratory management of ALS deserved top priority. In that era, there were no respiratory support studies found in the relevant literature. The need was discussed with the VNS as well as the Neuromuscular Association of Stark County. (Cazzolli served on their Advisory Board.) The observational study of ALS patients using any method of breathing support was ultimately approved. During 1984, she began a comprehensive investigation of ALS patients using mechanical ventilation at their homes and care facilities.

The VNS and Joan Warren, MSW, initially played a key role in locating ALS patients and other home care resources throughout Ohio. Mass mailings were sent to home care agencies, care facilities, and ventilator units at hospitals in search of ALS patients. News media and support group announcements went forth. Through the patient referrals, Cazzolli visited large numbers of ALS patients over widespread regions of Ohio.

The VNS informed Cazzolli about the ALS support group in Columbus, Ohio. Thus, she attended the monthly ALS support group meetings at Ohio State University (1984 to 1988). During those years, each month she visited several ALS patients at their homes and care facilities in Greater Columbus and southwestern Ohio. The VNS also referred Cazzolli to ALS patients in Toledo, Ohio. One of the patients she visited used two methods of noninvasive breathing support.

Although tracheostomy (invasive) ventilation was the most often used method of breathing support in the 1980’s, other methods were used. Due to the diligent efforts in finding ALS patients throughout the state of Ohio, Cazzolli acquired many patients who used noninvasive respiratory aids. These included: the curaiss, pneumobelt, the poncho, mouthpiece ventilation using an IPPB machine, the rocking bed and portable iron lung.

The Decade of the 1980’s: ALS Colleagues and Conferences

While pursuing her ALS mission, Pamela first met with Dr. Hiroshi Mitsumoto at the Cleveland Clinic in November 1984 to discuss the best management of ALS and the ALS patient population in Ohio. He referred her to Sally Nousek whose mother recently died of ALS. He mentioned that Sally was starting an ALS support group in Cleveland. Pamela and Sally began to frequently call each other on the phone. Sally was planning to launch her support group at the Cleveland Clinic. Finally, in June 1985, Sally held her first ALS support group meeting in the Cleveland Clinic Education Building.

In June 1985, Cazzolli attended her first ALS conference in New York City, sponsored by Mount Sinai Hospital in collaboration with the former National ALS Foundation. Because the ALS conference was held during the same weekend that Sally held her first support meeting in Cleveland, Cazzolli missed Sally’s first support meeting.

At the 1985 ALS conference in NYC, Pamela met Lynn Klein, RN, a nurse who resided in Texas at the time. Pamela also spoke with the late Senator Jacob Javits who had been diagnosed with ALS. During that conference, it was first revealed that the National ALS Foundation, headquartered in NYC and the ALS Society of America, headquartered in Los Angeles, were discussing merging together.

In 1986, it was officially announced that the National ALS Foundation and the ALS Society of America had merged together and had become the ALS Association (ALSA). Nurse Lynn Klein, whom Pamela met in 1985, moved to Los Angeles and became the Patient Services Director of ALSA. The first president of ALSA was Mr. Rodney Houts. Eventually, Mr. Houts flew to Canton, Ohio and met with Pamela Cazzolli to ask her to start an ALSA chapter in Ohio.

Cazzolli gave serious thought on starting the first ALSA chapter in Ohio during 1986, especially after receiving the special invitation from the new national headquarters. By then, Cazzolli had acquired a large registry of ALS patients. Not only was she providing services with the local VNS and co-facilitating their ALS support group meetings, Cazzolli regularly attended the bi-monthly meetings in Cleveland, regularly attended the monthly support group meetings in Columbus (1984-1988), and had started ALS support groups in Youngstown and Akron in 1986.

Although Cazzolli’s personal mission was to improve the care of people with ALS through research and education, and to pursue her investigation of ALS patients using breathing support, she recognized the need for an ALSA chapter. She identified the need for an organization to deliver patient services, generate public awareness of ALS and raise funds for research to explore the cause and treatment for the disease. Despite the separate mission that she was pursuing, Cazzolli was convinced that she must make a serious effort to establish an ALSA chapter. As a result, on April 3-5, 1987, she attended ALSA’s First Leadership Conference in Los Angeles. Approximately 100 people throughout the country attended that first conference.

Because Cazzolli desired a co-organizer for launching an ALSA chapter, the plans were postponed in 1987. Her colleagues in Columbus had already begun a Western Ohio ALSA chapter. Cazzolli was grateful to the President of the Chapter in Columbus, Chuck Studebaker, for financial assistance which made it possible for her to attend the upcoming ALS International Conference held in Kyoto, Japan in October 1987. At the Kyoto conference, Cazzolli was first introduced to scientific research on ALS. She also met again with the President of the ALS Association, Rodney Houts, and Lynn Klein, Patient Services Director. By the time she departed from Kyoto, Cazzolli was determined to start an ALSA Chapter in her region of Ohio in 1988, with or without a collaborator.

The following year in 1988 was very eventful. Beginning in January, Cazzolli met bi-weekly with Dr. Samuel Chou (whom she met in Kyoto) at the neuropathology lab at the Cleveland Clinic to learn about ALS, the nervous system, motor neuron degeneration and the possible risk factors for getting the disease. In the lab, Cazzolli viewed slides with cells from ALS patients through a microscope and spinal cords floating in jars. At the lab, she was also introduced to the leading theories on potential causes of ALS and was given numerous journal publications to read. Under the direction of Dr. Chou, she began an epidemiology study and began prospectively collecting antecedent events of patients with ALS prior to their first noticeable symptoms of onset.

End of the 1980’s Decade: Birth of the ALSA Chapter & Clinic