Building a Care Team

Building a multidisciplinary care team may include working with various specialists such as, but not limited to:

  • Neurogeneticist

  • Neurologist

  • Neuropsychiatrist

  • Movement disorder specialist

  • Genetic counselor*

  • Neuroradiologist

  • Licensed social worker

  • Physical therapist

  • Speech therapist

  • Nutritionist

Janice, dedicated caregiver

*For more information on genetic counseling, visit informeddna.com/ALSPAware.

Finding ALSP Experts

Receiving an initial diagnosis of a rare disease can be overwhelming and isolating, and it can be difficult to find doctors and care providers who know about ALSP. Building a care team who has experience with ALSP or is open and wants to learn more about ALSP is important.

If speaking with an ALSP expert is important to you and your loved one,
patient organizations may be able to help you connect.

Consider Genetic Counseling

Talking to family members about ALSP and genetic testing is not easy, but it is important. Certified genetic counselors can guide conversations, provide education about genetic risks, and explain the genetic testing process. Seeing a genetic counselor does not mean that you or your loved ones must get tested. A meeting can be an opportunity for you and family members to feel more informed before making any decisions.

Communicating with Health Care Providers

Communicating openly and clearly with health care providers will help ensure that you or your loved one can receive proper care and support, manage expectations, set goals, and make more informed treatment decisions.

There are no questions that are off limits when it comes to your or your loved one’s health. Don’t hesitate to ask hard questions, obvious questions, or even the same question twice. A partnership with health care providers based on trust and respect is important to help you navigate this uncertain time.

Caring for Someone with ALSP?

As ALSP is a progressive disease, a loved one living with ALSP will eventually require full-time support for personal care and medical management and your role as a caregiver will evolve. Being a caregiver to someone with ALSP is a difficult journey, but there are ways to help make it more manageable and fulfilling.

Learn more about tips for providing care and talking to your loved one with ALSP, staying organized during this complex time, and participating in discussions with health care providers, in this ALSP Guide for Caregivers and Family Members.