ALS Association

 


 

A Certified Treatment Center of Excellence Spotlight: Crestwood ALS Care Clinic

Our national network of 62 Certified Treatment Centers of Excellence (CTCEs) provides ALS care and services in a supportive atmosphere, emphasizing hope and quality of life.

CTCEs are multidisciplinary centers that bring together a team of health care processional specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline during a single visit.

The care team typically includes a neurologist, physical therapist, occupational therapist, respiratory therapist, nurse, dietitian, speech-language pathologist, social worker, mental health professional, and liaison from The ALS Association.

Studies show the benefits of attending a multidisciplinary clinic include longer survival, increased quality of life, and improved access to potential therapies. Thanks to donations from the ALS Ice Bucket Challenge, The ALS Association has increased the number of CTCEs, as well as the size of its annual grants to each one.

This is the third in an ongoing series of CTCE spotlights.

Crestwood ALS Care Clinic
Huntsville, Alabama
Co-Director: Dr. Aruna Arora
Co-Director: Dr. David White

The Crestwood ALS Care Clinic serves more than 100 people across Alabama. It was founded in 2009 and certified by The ALS Association in 2014.

We recently talked with Dr. Aruna Arora, co-director, who says Crestwood “focuses on crisis prevention, strong care coordination, and seamless communication with all medical professionals” to provide the best care and support to people living with ALS and their families.

Why did you want to work with people living with ALS?

For both me and Dr. White, neuromuscular medicine is a passion, and being able to work with those living with ALS to provide comprehensive care, solutions to management, and advocacy for research are driving reasons we have dedicated our careers to ALS.

We’re constantly inspired by people living with ALS. How do your patients inspire you?

People living with ALS and their caregivers are tireless in their drive to be involved in advocacy and education, and their humor and compassion are great sources of inspiration and motivation to provide an avenue for research, advocacy, and best practices in the care management of ALS.

What can someone expect during their first clinic visit?

Once we receive a referral, the clinical director calls the patient to review history, give a snapshot of services offered, and answer any questions.

Next, a clinic appointment is secured, an information packet is mailed, and the clinic nurse calls to complete a head-to-toe review and discuss questions for the team and priorities for the clinic visit.

The actual clinic appointment can last up to four hours. First, the patient is registered, and a nurse obtains vitals, weight, and height and completes a comprehensive assessment of system function (e.g. bowel, bladder, medication, skin protection, etc.).

Then, a respiratory therapist assesses and educates the patient. Spirometry testing is conducted. Education on forced vital capacity (FVC) and the impact it has on percutaneous endoscopic gastrostomy (PEG) placement is provided, and respiratory health information is reviewed.

Then occupational and physical therapists assess range of motion, skin condition, positioning, function for all transfers, mobility, and self-care needs, and, if indicated, conduct a power wheelchair evaluation.

Next, speech and nutrition specialists review calorie and protein needs, swallowing status, PEG readiness, and augmentative and assistive communication device needs.

Then, a neurologist reviews the team’s findings and provides a medical review and care recommendations.

Finally, a patient care services coordinator reviews available care services and grants as well as support group time and pending advocacy events. If equipment has been recommended, the appropriate vendor begins education on the equipment and sets up the home visit for delivery of the equipment.

The visit wraps up with a clinical coordinator summarizing the day, providing education on various aspects of care management, and scheduling the next clinic visit.

In what types of ALS research is Crestwood involved?

Crestwood has been involved with various research studies related to a biorepository, caregiver burden, fall prevention, and environmental exposure and ALS. We’re about to embark on a collaborative study with Hudson Alpha called “Impacting ALS,” that will perform genomic sequencing and strive to find answers for the cause of ALS and subsequent treatment of the disease.

Caregivers are vital for people living with ALS and family members often serve as primary caregivers. Does Crestwood offer support services specifically for caregivers?

We provide support groups in collaboration with The ALS Association Alabama Chapter. One group is exclusively for caregivers. We offer printed materials discussing how to prepare to care for someone with a complex disease and provide a 24-hour phone line so caregivers can discuss issues, ask questions, or just have someone listen to them.

A strong collaboration with community resources, including Alabama Respite, allows us to bring other avenues of support to caregivers.

What unique offerings or programs does Crestwood provide?

We conduct back safety education, car transfer training, home modification assessments, and one-on-one training with all equipment to be used, including PEG tubes, respiratory equipment, and all assistive and augmentative communication (AAC) devices.

Our Tools You Can Use program allows people living with ALS and their caregivers to share tips and tricks they’ve learned along the journey. We also have a mobile communication lab and work with Technology Assistance for Special Consumers to allow people with ALS to try other AAC equipment at no charge for 30 days.

What is the value of collaborating with The ALS Association to serve your patients and their families?

We can’t do this alone. Without the support of The ALS Association, our work simply wouldn’t be possible.