Multidisciplinary Clinics –The multidisciplinary care model brings together a team of health care professionals specifically trained to address the needs of people living with ALS, allowing you 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 an ALS Association Chapter liaison.
ALS 101 – Receiving a diagnosis of ALS is challenging and overwhelming. There is so much to learn, a great deal to consider, and typically a lot of questions. This series of classroom style education sessions has been designed to address your questions and connect you with resources that will enable you to live your life to the fullest.
Care Consultations – Through in-home visits, a Care Services Coordinator works with you and your family to provide health education and emotional support, and assess needs for care and equipment as the disease progresses.
Support Groups – Led by professionals, support groups provide opportunities for participants to share their experiences and learn more about living with ALS. Support groups are offered in a variety of locations and are open to anyone impacted by ALS. Specialized support groups are also offered to meet the unique needs of caregivers and people who are grieving the loss of a loved one to ALS.
Medical Equipment Loan Closet – Durable Medical Equipment (DME) will be necessary for maintaining your safety and independence as ALS progresses. While it is best to purchase some DME to meet your specific needs, other pieces are universal and can be acquired through the loan closet, at no cost to you.
Living with ALS - This unique program provides fun, interactive leisure activities so you can connect with peers in a non-threatening atmosphere. This is your opportunity to play a sport, create art, play music, or pick up a new hobby while meeting others living with ALS.
Transportation Program – Although research indicates that pALS who regularly attend clinics live longer, fuller lives, accessible transportation can often become a barrier to continued participation in medical care. Wheelchair accessible transportation to/from ALS clinic appointments is available if you are not able to acquire an accessible vehicle.
Respite Care – As the disease progresses, the 24-hour care required for a person living with ALS typically falls on a family member who must also continue the duties of maintaining a household. The Respite Care program provides funding to allow for a much needed break from the rigors of daily caregiving.
Children’s Program – This program serves youth ages 6 – 18 who all have one thing in common—they love someone with ALS. Interactive, fun events give kids a break from the realities of ALS and enable them build connections with peers who understand.
Patient & Family Counseling – Short-term counseling services are available to assist you and your family with addressing the challenges of the diagnosis including: Patient and family coping, family conflict resolution, support for attaining community mental health services, and healthcare decision making regarding end of life care.
Nurse Consults – When it comes to managing medical symptoms, some challenges are best addressed by a nurse who understands the secondary medical concerns that may arise as a result of ALS disease progression. Our Nurse Educator specializes in ALS and is available for education and training during support groups and on an individual consultation basis. Don’t hesitate to reach out when you “just need to talk to a nurse”!
Respiratory Consults – As ALS progresses, you may encounter challenges related to breathing, coughing, and changes in salivation. Education with a Respiratory Therapist is available to assist with managing these symptoms and help guide you in decision making about various respiratory support options.
Certified Child Life Specialist Consulting – Short-term, age appropriate counseling services to support youth facing the realities of their loved one’s ALS diagnosis are available. These services can include: assisting parents in facilitating difficult conversations, helping kids understand diagnosis and disease progression, facilitating family meetings regarding diagnosis, and planning for on-going support.
Caregiver Support – Providing care for someone with ALS can be very rewarding. It can also be very challenging at times. We understand these unique challenges and provide resources designed specifically to support caregivers. Caregiver support groups, Caregiver Skills trainings, Caregiver Appreciation, and Care Connections, are just a few of the ways we are here to help.
Community Referrals – Want to remodel a bathroom or build a ramp? In need of an accessible van? Looking for a home care company with experience with ALS? Need an attorney? Reach out to us! While we cannot recommend specific companies, we have created referral lists from agencies/companies who have been recommended by other ALS families. If you are looking, chances are we have list for that.
