Doing Whatever It Takes to Provide Care for People Living With ALS

Clinic team

Our ALS Certified Centers and clinics around the country are committed to doing whatever it takes to provide the best possible multidisciplinary care and support for people living with ALS and their families. Their dedicated teams of healthcare professionals are specially trained to address their patient’s needs, allowing them to receive care from each discipline during a single visit.

Recently we caught up with Angel Preece, registered nurse and clinic coordinator at The Neuromuscular Center at Hospital for Special Care, ALS Center of Excellence, in New Britain, Connecticut and she shared what it is typically like to visit their clinic, interact with her team and receive collaborative care from numerous clinicians during one appointment.

Scheduling and Check-in:

Administrative assistants Sharon and Maribel are typically the first to speak directly to the patient on the phone to obtain all the necessary records and set their initial appointment. Patient account representatives, Rosie and Brunie, check the patients in to their visits, handing them off to medical assistants Nicole and Luz who bring patients into their exam room and collect what they need to get started. “Each of these individuals respectfully greets each patient and their respective family with a warm smile and provides a confident, compassionate attitude,” says Angel.

Neurology:

The team is headed by neuromuscular neurologists Dr. Kevin Felice and Dr. Charles Whitaker, who see their patients regularly throughout their ALS journey. “Dr. Felice and Dr. Whitaker share a deep, gentle compassion for those with ALS, and have many years of experience in the field,” she said. “They have published a variety of articles, given interviews, and mentored many medical students and residents in this neuromuscular specialty.”

Respiratory Therapy:

Respiratory therapist Kristina assesses patients for any breathing issues.  Kristina is known for kindly caring for, identifying any respiratory issues and promptly obtaining any necessary recommended respiratory equipment. “She has wonderful follow through, and the patient knows that they are safe in her hands,” says Angel. Recognizing the fear and anxiety that often accompanies breathing issues, Kristina often answers calls on her off shifts and weekends, alleviating patient anxiety and helping them to feel more comfortable.

Speech Language Pathology: 

The team’s speech language pathologist (SLP), Kim, helps with the “Voices for Joanie” equipment loan closet, which contains a variety of augmentative and alternative communication devices. With this invaluable resource, she is able to coordinate and lend out devices and provide expert education in the use of the equipment. Kim also sees patients for their difficulties with speech or swallowing and possesses the ability to recognize the early signs of Bulbar ALS, promptly referring them to the clinic for diagnosis. “She goes above and beyond in helping our patients be able to communicate their needs and thoughts when their voice has been taken away from them by ALS,” Angel said.

Occupational Therapy:

Robin and Hayley are the occupational therapists (OTs) who intervene with almost every patient. “They are often referred to as the ‘MacGyver’s of the team,’ able to construct a usable device to help a patient do any particular task,” says Angel. They assess hand and arm function followed with an expert recommendation of the best possible device or solution to help the patient or family members assist with activities of daily living, assuring a quality of life with dignity for both patients and families.

Dietary/Nutrition:

Jackie is the clinic’s nutritional specialist who provides supplements and recipe books to patients and families impacted by ALS. She develops the best plan for the nutritional support of their patients, keeping them strong and hydrated throughout their journey with the disease. 

Physical Therapy:

Gretchen and TJ, the team’s physical therapists (PTs), work tirelessly to keep their patients as mobile and safe as possible. “Their tasks seem infinite: evaluating ambulation and positioning, demonstrating transfer techniques, fostering independence as much as the patient can tolerate, making recommendations to home care agency, writing appeal after appeal and letters of medical necessity, and calling DME companies and insurance companies time and time again to get mobility devices covered,” she said. “They never give up!”

Nursing:

Katharine and Angel are Nightingale Nurses who bring years of knowledge and expertise with regard to skin care and feeding tube placement and management. They are constantly teaching and providing supplementary educational materials to their patients and families, advising on the day-to-day management of symptoms of the disease.

Social Work:

Lindsay is a licensed clinical social worker (LCSW) and is there to answer any questions her patients and families have. “She has invaluable connections with home care agencies and is in constant contact with The ALS Association Connecticut Chapter as well as the MDA representatives to provide their patients with any assistance they need during any given challenge,” said Angel. “She orders homecare, fills out most of the patient’s paperwork, and connects them to state and federal agencies to open them up to any support available.  She is also licensed to do individual therapy, which has greatly assisted their patients in managing the stress and anxiety of living with ALS.”

Genetic Testing/Infusion Therapy:

Nicole is a medical assistant and the team’s genetic testing and infusion therapy expert. “When you call Nicole, you will get the most up to date status and information regarding your testing or infusion therapy,” said Angel. She actively contacts the insurance companies, testing facilities and infusion companies.

Research/Clinical Trials:

“Our research team, Honora, Natalie, Zanib, and Stephanie are an awesome group of experts, working in clinical trials, and keeping meticulous records, and communicating with the study participants,” she said. “They have formed deep bonds and relationships with their patients, and are proud to be one of the top enrollers in the United States for the Healey ALS Platform Trial.”

Pulmonology:

The pulmonary team, Dr. Votto, Betsy, and Ramiro also follow patients in the pulmonary clinic for any respiratory needs they may have. They order devices and have heartfelt honest discussions regarding the challenges they face through their disease progression.

“We continually strive and take pride in providing exemplary care, actively involving our patients, family, and staff in this team approach, and always providing a caring and safe place to turn to for those with special health needs,” said Angel. “We laugh and cry with our patients and families, getting to know them quite well during the time that we are caring for them. Many of these individuals have touched our lives in ways that we would have never imagined, and they have changed us forever with the grace and dignity they have shown during their horrific battles with such a devastating disease.”

“Together, we do whatever it takes!”

Special thanks to Angel Preece and her team and The ALS Association Connecticut Chapter for allowing us to share this inspiring story. To learn more about multidisciplinary care and ALS, visit our website HERE.

 

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