PAMELA A. CAZZOLLI, RN

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

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.

   
 

DECADE OF THE 1990'S

Pamela served in multiple roles throughout the 1990’s:

  •  Nurse Consultant of the ALS Association Eastern Ohio Chapter:  1988 - 2000                    
    -     Part-time position; time; she also volunteered numerous hours to fulfill the needs of ALS families and help healthcare providers formulate best plans of care.
    -     The name of the Chapter changed to Northeast Ohio Chapter in 1997.
    -     Later, the Chapter became the Northern Ohio Chapter.
    -     Although the service territory of the Chapter was 35 counties, she provided services to ALS families and care providers well beyond the limits of her geographical region; she often provided volunteer consultation services for ALS patients in Western Pennsylvania and West Virginia, as needed.
    -     She wrote articles on living with ALS and its management of problems for bi-monthly ALSA newsletter publications; the articles reprinted and used by many of the other ALSA chapters.
    -     Eastern Ohio Chapter received an award for Best Patients Services in 1994.

     

  • First Nurse Coordinator of the ALS Center at the Cleveland Clinic Foundation
    -     March 2, 1989 to March 9, 1995; served one day a week on location. 

  • ALS Nurse Services in affiliation with the Visiting Nurse Society of Stark County.
    -     Co-facilitator of the VNS sponsored ALS support group.
    -     Provided home care consultant / case management services for ALS patients.
    -     Nursing research studies/ investigator of ALS patients using home mechanical ventilation.
    -     Through the years, Cazzolli worked together as a team with Joan Warren, MSW, ALS Social Worker with the VNS of Stark County.  Together they co-facilitated the ALS support group on Sunday afternoons bi-monthly for 24 consecutive years (1984 – 2007), before transitioning weekday/evening meetings in 2008.  In the 1990’s, the ALS support meetings in Canton were frequently attended by 50 or more people.  At one support meeting at the North Canton Medical Foundation Education Building, 78 people attended.  ALS families traveled from afar due to the wide publicity and by word of mouth, generated by Cazzolli’s volunteer services in the tri-state region. 
     

  • Case Management Services for ALS patients, Independent Contractor, part-time.
    -     Provided services for multiple insurance companies and home care/hospice agencies, including the Hospice of the Western Reserve in Cleveland, Ohio.
     

  • Provided educational programs on caring for patients with ALS at the North Canton Medical Foundation, North Canton, Ohio.  She also provided her programs at other Ohio locations, including Cleveland, Elyria, Parma, Mentor, Youngstown, Columbus, Dayton, Cambridge, Marietta, Portsmouth, Mansfield, Wooster, Butler, Steubenville, Lima, Coshocton, and Toledo.
     

  • Co-investigator in the study of ALS patients receiving long-term mechanical ventilation (1994 – 1996).  The principle investigator was Alvin Moss, MD, Center for Health Ethics and Law, University of West Virginia in Morgantown, WV; other co-authors of the study were staff from the University of Chicago Department of Neurology, the University of Chicago Pritzker School of Medicine, and the California Kaiser Permanente Medical Care Program.  The study was primarily funded by the University of Chicago Home Health Care Research, and in part by the Muscular Dystrophy Association.  Cazzolli visited 31 ALS patients (majority of patients in the study) who used a ventilator at their homes or care facilities.  The majority of the ALS patients indicated that they were “glad to be alive” using a ventilator, and “would chose to do it again” if given the choice.
    -     Moss AH, Oppenheimer EA, Casey P, Cazzolli PA, Roos RP, Stocking CB, Siegler M.  Patients with amyotrophic lateral sclerosis receiving long-term mechanical ventilation: advance care planning and outcomes. Chest 1996; 110:249-255.
     

  • In the 1990’s, Cazzolli became a pioneer investigator of use of nasal/oral ventilation in people with ALS.
     

  • In 1997, she began serving on the Advisory Board of the Respiratory Care Department at Stark State College, Canton, Ohio.
     

  • In 1999, she became a member of the American College of Chest Physicians.
     

  • In 2000, she became a member of the American Association of Respiratory Care.

Advent of Nasal Mask Ventilation in the 1990’s

The advent of nasal ventilation began when Respironics, Inc. in Murrysville, PA invented the “BiPAP,” the bilevel ventilator in 1990.   Edward Sivak, MD, former pulmonary physician at the Cleveland Clinic, was the first physician in Ohio to prescribe the BiPAP for a patient with ALS, and most likely one of the first in the USA.  Cazzolli was ecstatic when she personally observed that the use of the machine really did support breathing and prevented respiratory failure in patients with ALS. 

While serving as the Nurse Coordinator of the ALS Center at the Cleveland Clinic, Cazzolli met with Dr. Sivak, the pulmonary physician, who also served on the team.  He instructed Cazzolli on the use of this new breathing support method, the bi-level positive airway pressure ventilator, (BiPAP).  Cazzolli invited Dr. Sivak to speak at her ALS support meeting in Canton.  Many ALS patients were excited to learn about the new option.  Gradually, many of those ALS patients who attended the meetings in Canton began using the “BiPAP.”  As Cazzolli provided educational programs for nurses and healthcare providers throughout Ohio, she began educating on the use of nasal/oral ventilation.  As a result, more people with ALS benefited from its use, even those living in rural communities.  In the midst of the exciting era, Cazzolli was sorry to learn that her mentor, Dr. Sivak, was moving his practice to the State University of New York.   

The advent of nasal/oral ventilation in the 1990’s was truly the most significant  breakthrough in history for people with ALS.  Besides the BiPAP, the “VPAP” ventilator by the ResMed corporation was invented.  Also, some physicians were prescribing volume-cycled ventilators.  Regardless of the mode of ventilation, Cazzolli observed firsthand that the ALS patients who achieved optimal use of nasal/oral ventilation were able to continue breathing and living, unless oral secretions became severe.  

For the first time ever, a simple treatment became available for people with ALS to survive well beyond respiratory failure, without invasive, extraordinary measures or taking a pill.  For the first time ever, the introduction of noninvasive ventilation with a nasal mask, nasal pillows, full face mask or mouthpiece began to revolutionize the care of ALS, especially because it was initiated in an era when all the traditional methods of breathing support were still prevalent.   

Well into the decade of the 1990’s, most people with ALS used tracheostomy (invasive) ventilation as a result of emergency hospitalization for a respiratory crisis, often followed by weeks of intensive care in an ICU.  The patients were almost never involved in critical decision-making.  In those days the legal and ethical issues that now allow a person to stop undesired treatment were not yet clearly identified.   

Many of the tracheostomy ventilation users in the 1990’s had previously tried using the  traditional old methods of noninvasive method of breathing support.  The older methods usually resulted in failure.  Consequently, sudden respiratory failure, emergency hospitalizations, and unplanned tracheostomy ventilation were frequent outcomes.  

   

Cazzolli visited many ALS patients at their homes or care facilities who used tracheostomy ventilation around-the-clock for 5, 10 and even 15 years.  In addition, during those historic years, she often observed patients at their homes using noninvasive respiratory aids, such as the chest shell (curaiss), pneumosuit, pneumo-jacket, the pneumobelt, mouthpiece ventilation using an IPPB machine, the portable iron lung, and rocking bed, as used in the polio era to support breathing.  However, she saw that those methods were cumbersome, inconvenient and often ineffective, particularly for ALS patients with marked disability and respiratory impairment.   

Cazzolli continued her investigation of ALS patients using respiratory aids.  She followed their progression of respiratory impairment until the end.  She traveled extensively throughout the state of Ohio, western PA and WV.  She visited ALS patients at their homes and care facilities.  Each visit averaged two hours.  Using both visits and phone calls, the patients were closely monitored, from the time of referral until the end-of-life.  Cazzolli learned firsthand that no two patients with ALS were exactly alike.

Through the 1990’s, Cazzolli provided nursing consultation and support services to hundreds of patients via the phone and home visits.  During that decade, she maintained a registry of roughly 300 patients throughout Ohio, as well as additional patients in Western Pennsylvania and West Virginia.  Cazzolli attributes her registry’s high volume to her aggressive education efforts on the optimal use nasal/oral ventilation since its introduction in 1990, and her observations on how it improved the ALS survival timeline.   

Despite observing the remarkable growth of the number of ALS patients using mask ventilation in Ohio, mostly as a result of aggressively educating on the option, Cazzolli became aware of the under-utilization of the noninvasive method elsewhere. 

In 1994, in the midst of her nursing research studies of ALS patients at home, Cazzolli visited John Bach, MD at the Muscular Dystrophy Association Clinic, University Hospital in Newark, New Jersey for education on the optimal use of noninvasive ventilation and airway clearance.  Since that time, Dr. Bach has become a valued mentor. 

 

Cazzolli was one of the first clinicians to report at ALS national and international conferences that the use of the “BiPAP” or nasal/oral mask ventilation improved survival for ALS.  (Cazzolli PA, Oppenheimer EA. Home mechanical ventilation for amyotrophic lateral sclerosis: nasal compared to tracheostomy-intermittent positive pressure ventilation. J Neurol Sci 1996; 139 (Suppl.):123-128).

CAZZOLLI’S RESEARCH & EDUCATION HIGHLIGHTS: 1990’S

October 1993:  Invited as guest speaker at Denmark’s first national ALS conference; gave lectures on nasal ventilation and maintaining nutrition; met with Jette Moller and her team at the Muscular Dystrophy Association in Denmark. 

 

November 1993:  Attended the 4th International Symposium on ALS/MND in France; over 100 people attended.  At the symposium, she shared that nasal/oral ventilation was improving the survival timeline of those ALS patients without excessive oral secretions.

 

January- June 1994:  Served as a co-investigator in the study of ALS patients using long-term mechanical ventilation (MV).  The grant-funded study was in collaboration with the University of Chicago.  She visited 31 long-term ventilator users with ALS (or majority of patients in the study) at their homes or care facilities.  The patients were asked if they were glad that they were alive, and if they would choose MV again. 

 

August 1994:  Gave presentation and then served on the panel discussion of Ethical Decision-Making on Long-Term Mechanical Ventilation at the “Concepts in Managing ALS Conference” in Philadelphia, PA, sponsored by Hahnemann University and ALSA.

 

September 1994:  Visited John Bach, MD at the Muscular Dystrophy Association Clinic, University Hospital in Newark, New Jersey for education on optimal use of noninvasive ventilation and airway clearance.  Dr. Bach is globally known for being a pioneer      

 

November 1994:  Attended the 5th International Symposium on ALS/MND in Holland and gave a platform presentation on Planning and Implementation on Effective Respiratory Care of ALS/MND Patients:  The Nursing Approach.  She co-chaired the respiratory management session with Dee Holden Norris, RN, wife of the late Dr. Forbes Norris.

 

March 1995:  Gave lecture on comparing use of tracheostomy to nasal ventilation at the International Conference on Home Mechanical Ventilation. At the conference, she met Dr. Augusta Alba, former Associate Professor of Rehabilitation Medicine at New York University.  Dr. Alba was the pioneer of noninvasive ventilation.  Also, met with Jack Emerson, inventor of the iron lung.  Cazzolli entered and used the iron lung in the exhibit hall, while Mr. Emerson and Dr. Alba were present.    

 

November 1995:  Attended the 6th International Symposium on ALS/MND in Dublin, Ireland; gave a platform presentation on Home Mechanical Ventilation for Motor Neuron Disease:  Nasal Compared to Tracheostomy Intermittent Positive Pressure Ventilation.

 

1996:  Articles were published: 

Cazzolli PA, Oppenheimer EA. Home mechanical ventilation for amyotrophic lateral sclerosis: nasal compared to tracheostomy-intermittent positive pressure ventilation. J Neurol Sci. 1996;139(Suppl):123-128.

Moss AH, Oppenheimer EA, Casey P, Cazzolli PA, Roos RP, Stocking CB, Siegler M.  Patients with amyotrophic lateral sclerosis receiving long-term mechanical ventilation: advance care planning and outcomes. Chest 1996; 110:249-255.

 

September 1996:  Invited by ALSA to attend a meeting in San Francisco for nurse coordinators of ALS clinics across the country to discuss the management of care. 

 

November 1996:  Dee Holden Norris, RN (Forbes Norris ALS Center, San Francisco)  visited Cazzolli  in Canton, Ohio and spoke at her ALS support group.  Cazzolli attended the 7th International Symposium on ALS/MND in Chicago. 

 

March 1997:  Cazzolli gave a platform presentation at the International Conference on Home Mechanical Ventilation about survival and outcomes of ALS patients using nasal/oral ventilation.

 

1997:  Attended the Annual ALSA Leadership Conference in Phoenix, AZ.  Cazzolli gave an educational presentation to the nurse coordinators of ALSA clinics about the  use of nasal/oral ventilation for ALS patients.  After the conference, Cazzolli toured Sedona with her nursing colleague, Dee Norris, RN (Forbes Norris ALS Center, San Francisco). 

 

October 23, 1997:  Invited guest speaker, along with Dr. Theordore Munsat (Tufts-New England Medical Center), at the State-of-the-Art Management of ALS Program at the University of Texas Health Science Center in San Antonio.  Cazzolli gave 90 minute lecture on “Effective Respiratory Management of the ALS Patient.”

 

November 1997:  Attended the 8th International Symposium on ALS/MND in Glasgow, Scotland.  Cazzolli gave a platform presentation on ALS: 1984 to 1997: Changing Pattern of Long-Term Mechanical Ventilation. 

 

May 1998:  Attended the American Academy of Neurology meeting in Minnesota; gave a poster presentation.  Cazzolli’s abstract was published in the abstract journal of Neurology (Cazzolli PA, Oppenheimer EA. Use of nasal and tracheostomy positive pressure ventilation in patients with ALS: changing patterns and outcomes [abstract]. Neurology 1998;50: Suppl4:A417-A418). 

 

May 1999:  At the ALSA Clinical Conference Workshop in Washington DC, Cazzolli co-chaired the respiratory management session and gave the key lecture on: “The Hands-On Approach to Pulmonary Procedures, Use of Ventilators and Equipment.”

 

November 1999:  Attended the 10th International Symposium on ALS/MND in Vancouver, Canada. 

 

December 1999:  Invited speaker by the American Association of Respiratory Care (AARC), gave 90-minute lecture on the respiratory management of ALS at the annual  AARC Conference in Las Vegas. 

YEAR OF 2000 & BEYOND

2000:  The New Millenium:  Birth of ALS Care Project

ALS Care Project (ALSCP) was established as a nonprofit organization in 2000 to pursue the research and education mission for improving ALS care.  The project evolved from over 16 years (1984-2000) of Pamela Cazzolli’s diligent efforts to improve the quality of care of people with ALS.  Cazzolli recognized that there was an alarming high number of ALS patients, who experienced avoidable complications, emergency hospitalizations, undesired outcomes, early mortality, and unnecessary high costs for care.  She frequently observed the unnecessary failed use of nasal/oral ventilation, and the significant under-utilization of simple, cost effective methods of breathing support.  Patients who faced emergency hospitalizations often received inappropriate treatment and unplanned or unwanted invasive life support.   
 

Cazzolli recognized that if respiratory failure is the primary cause of death in ALS, then continued respiratory care research deserved the highest priority.  Years earlier, Cazzolli had been one of the first investigators of ALS patients using noninvasive or invasive breathing support to improve breathing and living.  Despite the fact that some of the results of her studies were published, she realized that her work was really just beginning.  She knew this would involve a long-term, prospective study by visiting as many people with ALS as possible.  That included visits to the patient’s homes and care facilities throughout Ohio, Western Pennsylvania and West Virginia.  There would be a need for sufficient funds to pursue the mission.  At that time, her extensive travel expenses were mostly self-funded.

 

 
Need for Nursing Guidelines on ALS Care

Cazzolli whole-heartedly believed that ALS is one of the most challenging of all diseases. ALS requires complex, comprehensive nursing care management for achieving desired outcomes. Most importantly, she became very aware that best practices of care for ALS, based on clinical evidence, were virtually nonexistent in the available nursing literature. Almost all of the published information was either insufficient, inaccurate, or misleading. 
 

Knowing that nurses are the patient educators, Cazzolli recognized the need for nurses to have accurate, sufficient and necessary information about ALS and best practices of care.   Nurses have the most frequent contacts with patients and serve as the coordinators of care at home and hospice agencies, care facilities and outpatient centers. They work closely as a team with the patient's physicians and other healthcare providers. Cazzolli identified the need for guidelines for nurses on the best practices of ALS care in community settings.

 

 

Need for Best Practices of ALS Care in Community Settings
Through the years, Cazzolli also identified the vital need for multidisciplinary teams of healthcare providers in community settings and the need for best practices of ALS care for every discipline and resource of healthcare.  For optimal management of the multiple problems, people with ALS require multiple healthcare providers.  This includes    physicians, nurses, respiratory therapists, physical therapists, occupational therapists, social workers, speech pathologists, nutritionists, counselors, clergy, case workers, healthcare students, and etc.  Healthcare resources include clinics, outpatient centers, home care or hospice agencies, care facilities and hospitals in community-based settings.


ALS Care Project Established to Pursue ALS Care Mission

ALS Care Project (ALSCP) was established to pursue collaborative research and education on evidence-based, best practices of ALS care to prevent the high prevalence of avoidable complications and undesired outcomes.  In 2000, Cazzolli recognized that time was critical in the lives of people with ALS.  She believed that the new millennium earmarked the appointed time, long past due, for a new beginning in the cause of ALS care.  Until then, minimal attention was devoted to preventing the frequent adverse outcomes of people with ALS. 

   

ALS Care Project was incorporated on February 4, 1998, as the ALS/Neuromuscular Education and Research Fund and became a nonprofit, 501© 3, tax-exempt organization in 2000.  The name of the nonprofit transitioned to ALS Support Network in 2001, and then to ALS Care Project in 2007. 

Social worker, Joan C. Warren, MSW helped Cazzolli launch the nonprofit in 2000.  Since 1984, the two have worked together as a team.  They continue to do so today.  “Called to care,” ALS Care Project is dedicated to help those with ALS live the best life possible.


Primary Goals:

  1. Establish best practices of respiratory management (based on clinical evidence and experience) for people with ALS in the community-based setting through research collaboration. 
     

  2. Establish best practices of ALS care for nurses and respiratory care practitioners (based on clinical evidence and experience); followed by peer-review.
     

  3. Collaborate with other researchers to investigate the incidence/prevalence of ALS and possible risks associated with disease onset for increased knowledge of the disease.
     

  4. Disseminate evidence-based information through multiple methods of education on best practices of ALS care.  Provide accurate, necessary, and understandable information about the disease.                                           

Objectives include: (a) achieve best patient outcomes (b) achieve optimal breathing comfort (c) prevent avoidable complications (d) prevent emergency hospitalizations (e)  prevent early mortality (f) prevent unwanted life support (g) fulfill patient wishes (h) spare unnecessary costs for care.

 

 

 Collaborative research and education on best practices of ALS care are a necessity for achieving best patient outcomes.
 

On behalf of the ALS population, ALS Care Project calls for all ALS organizations, clinics and healthcare providers to work together.

** Together we can make a world of difference **

 

AFFILIATIONS / PROFESSIONAL MEMBERSHIPS:

Pamela A.  Cazzolli, RN

Advisory Board, Respiratory Care Department, Stark State College      

   (1997 to present)

 

American College of Chest Physicians, Allied Health Member (1999 to present)

*  Steering Committee of the Home Care Network, American College of Chest

    Physicians (2005 – 2013); formerly served on Home Ventilation Management Project

    and the Emergency Preparedness and Disaster Response Committee.

 

American Association of Respiratory Care (2000 to present)

*  Home Care Division of American Association of Respiratory Care (2000 to present)


COMMUNITY AWARDS:

  • YWCA Stark County Women’s Hall of Fame for the Human Service Award, May 9, 2006, Marriott McKinley Grand, Canton, Ohio.

  • Howard Kruman Outstanding Citizen Award (presented by the Jackson Belden Chamber of Commerce), April 18, 2007

 

 

RESEARCH & EDUCATION HIGHLIGHTS:  2000 to Present

February-March 2000 (two weeks): Invited by Dr. Coskun Ozdemir, neurologist and Director of the Neuromuscular Association of Turkey to provide educational programs for nurses and care providers on management of ALS; 

  • Provided a one week course in Istanbul on “Caring for ALS Patients at Home” in which 70 nurses attended, including the Florence Nightingale nurses

  • Gave a lecture at the University of Istanbul;

  • Met with the President of the University of Istanbul;

  • Gave lectures for nurses and nursing faculty at multiple universities;

  • Met with government officials in Ankara to discuss the needs for providing home care equipment and services for disabled people who are homebound in Turkey.

 

March 14-16, 2000:  Gave a lecture in Safad, Israel at the First International Conference in Israel on Respiratory Rehabilitation of Patients with Chronic Respiratory Failure. Cazzolli spoke on the use of noninvasive ventilation in patients with ALS, and co-chaired the Ventilator Users Session with Dr. John Bach (University Hospital, Newark, NJ). The conference was organized by Dr. Ditz Gross, Director of Pulmonary Rehabilitation, Sourasky Medical Center in Tel Aviv. 

 

2001 – 2003:  For two years, Cazzolli served as facilitator of the ALS support group meetings, as well as facilitator of specific neuromuscular disease support groups that were sponsored by the Muscular Dystrophy Association in Cleveland.  The support group meetings were held at Cleveland MetroHealth. 

 

March 2001: In Italy, Cazzolli gave a lecture on respiratory and daily management of ALS at the University of Pisa's department of neurology. Cazzolli was invited by neurologist, Dr. Paolo Bongianni. 

 

November 2001:  Attended the 12th International Symposium on ALS/MND in Oakland, CA, co-chaired the respiratory session and gave a presentation on factors regarding the failed use of nasal/oral ventilation in patients with ALS.   

 

March 2002:  Provided a one-day program at the Japanese ALS Association Annual Meeting in Tokyo on the management of ALS.  About 500 attended, including physicians, nurses, care providers and ALS patients and families. 

 

November 2002:  Gave a platform presentation at the 13TH International Symposium on ALS/MND in Melbourne, Australia on noninvasive ventilation at the end-of-life.

 

August 2003, 2005 and 2008:  Gave multiple lectures on use of noninvasive breathing support for ALS during trips to multiple regions in Japan, including:  Tokyo, Sendai, Hiroshima and Kyoto.  During the trips, Cazzolli visited many hospitals, care centers and patients at their homes.  Also, visited colleagues at the Metropolitan Institute of Medical Science, including Yuki Nakayama, RN, PhD, Hideaki Hayashi, MD, and  Akiko Ogura, RN, PhD.  

 

March 2005:  Gave a research presentation at the International Home Mechanical Ventilation Conference in Lyon, France on the use of noninvasive ventilation of ALS. After the conference, visited colleagues, Jette Moller and team, at the Muscular Dystrophy Association in Aarhus, Denmark.

 

December 2005:  At the 16TH International Symposium on ALS/MND IN Dublin, Ireland, Cazzolli gave a presentation on Noninvasive Positive Pressure Ventilation to Improve the Quality of Life of ALS/MND Patients at the Allied Professionals Forum.

 

2007:  Authored a Chapter in book for healthcare professionals:  Cazzolli PA. The Perspective of Family and Caregivers. In: Ambrosino N, Goldstein R. (eds) Ventilatory Support for Chronic Respiratory Failure. New York, NY. Informa Healthcare USA, 2008: 480-500.                     December 2007:  Gave a platform presentation at the 18th International Symposium on ALS/MND in Toronto, Canada on:  A 20 Year Study of Outcomes of ALS/MND Patients Using Tracheostomy Ventilation.    

June 2008:  Gave presentations in Tel Aviv, Israel at the International Conference on Chronic Ventilated Patients: Multidisciplinary Management from ICU to Home; gave lectures on optimal use of noninvasive ventilation in patients with ALS and quality of life for patients using long-term breathing support.  The organizer of the conference was Dr. Ditza Gross, Director of Pulmonary Rehabilitation, Sourasky Medical Center in Tel Aviv. 

 

May 2010:  Gave a poster presentation at the annual American Academy of Neurology meeting in Toronto on the Oral Secretion Scale in ALS Patients:  Cazzolli PA, Brooks BR, Lewarski BS, McKim DA, Chatburn RL. Oral Secretion Scale [OSS] Score in Amyotrophic Lateral Sclerosis [ALS] Patients is Associated with Tolerance of Noninvasive Positive Pressure Ventilation (NPPV), Need for Hospice or Transition to Tracheal Positive Pressure Ventilation [TPPV] and Survival. Neurology (2010) A1-A727;Vol 74;No 9; Suppl 2: A181.

December 2010:  Gave platform presentation at the 21st International Symposium on ALS/MND in Orlando, FL on:  Risks of Respiratory Failure of ALS patients; and also gave a poster presentation on the Oral Secretion Scale in ALS Patients. 

December 2011:  Attended the 22nd International Symposium on ALS/MND in Sydney, Australia.  Also gave a lecture on Managing Respiratory Failure, Enhancing Life Expectancy and Promoting Comfort at the End-of-Life in ALS Patients. 

March 2012: Attended the International Conference on Home Mechanical Ventilation in Barcelona, Spain.  Cazzolli then visited the Salpêtrière Hospital in Paris, France, birthplace of the field of neurology in the 19th century and where Dr. Jean-Martin Charcot first identified and described ALS in 1869.  She also visited the ALS clinic at the Salpêtrière and met with Director, Dr. Pierre Francois Pradat and his ALS care team, including Dr. Jesus Gonzalez-Bermejo, pulmonary physician.  Cazzolli gave a presentation at the ALS clinic on use of the Oral Secretion Scale for ALS.    

 

December 2012:  Presented a poster at the 23rd International Symposium on ALS/MND in Chicago on Slow viruses and ALS/MND: An idea ahead of its time?

 

December 2013:  Gave a platform presentation at the 24th International Symposium on ALS/MND. Oral Secretion Score (OSS) predicts best care interventions and outcomes of patients with ALS/MND using noninvasive ventilation
 

December 2014:  Gave a platform presentation at the 25th International Symposium on ALS/MND on Independent factors associated with failed use of noninvasive ventilation (NIV) in patients with ALS/MND.

March 2015:  Gave presentation at the 14th International Conference on Home Mechanical Ventilation, 5th European Respiratory Care Association Congress, Lyon, France on Factors Associated with Failed Use of Noninvasive Ventilation in Patients with ALS. 

 
 
 
 
 
 
 
 
 
 
 
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ABOUT US

ALS Care Project is the only 501(c)3 nonprofit organization whose primary mission is to educate on best management of ALS care for best patient outcomes.

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330.492.4ALS (4257)

330.497.1792 - ALS Nurse Line

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Ste. 216 - Canton, Ohio 44718​

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