4D: Deep Dive into Degenerative Diseases – Navigating the Path, Episode 3: The ALS Association

Host: Ken Vanako (Physical Therapist, Outpatient Neuro Clinic at Brown University Health; Podcast Committee, DD SIG)
Guests:

• Lauren Lamar (Care Services Manager, ALS Association)
• Kyle Vasher (Liaison Coordinator, DD SIG; Physical Therapist)
  Release Date: May 29, 2025

Episode Overview

This episode, released during ALS Awareness Month, spotlights the ALS Association. Host Ken Vanako leads an insightful conversation with Lauren Lamar, Care Services Manager at the ALS Association, and Kyle Vasher, DD SIG Liaison Coordinator. Together, they explore the ALS Association’s key roles, resources, and strategies for supporting people with ALS and their caregivers, emphasizing the power of early support, multidisciplinary care, and accessible resources for both families and healthcare providers.

Key Discussion Points & Insights

1. Introduction to Guest Roles & ALS Challenges

• Lauren’s Role:
  • As care services manager, she is often one of the first points of contact after diagnosis ([01:44]).
  • Provides emotional support, coordinates resources, equipment, home modifications, and guides patients through the initial shock.
• Impact of Diagnosis:
  • ALS diagnosis often comes as a complete shock to patients and their families.
  • Primary role is to “provide them with as much support as possible” ([02:45]) to ease this transition.

2. Support for Newly Diagnosed Individuals

• Structured Guidance:
  • Patients often ask: “What can I expect? What are the next steps?” ([03:54])
  • ALS Association offers a six-part newly diagnosed support group, providing education on the journey ahead, advocacy, and family adjustment ([04:14]).
• Practical Resources:
  • Immediate assistance with Medicare, Social Security Disability, Medicaid, and future planning for home care ([05:17]).
  • Focus on maximizing independence and making homes ADA-accessible, aiming for the “best quality of life as possible” ([05:50]).

3. Caregiver Support

• Dedicated Support Groups:
  • Caregiver-only groups allow sharing of unique experiences and struggles ([07:11]).
  • Grant programs for respite care are available based on location and funding, aiming to prevent caregiver burnout ([07:11], [08:18]).
• Community and Peer Support:
  • Peer networks help caregivers connect and support one another through daily challenges.

4. Access to ALS Association Resources

• Finding Help:
  • Priority on enrolling in ALS multidisciplinary clinics, which provide PT, OT, nutrition, social work, and care coordination ([10:09]).
  • Website (ALS.org) offers resources, local care managers, and both patient and provider guides ([10:09], [11:19]).
• Resource Portal:
  • Free educational guides for patients of all ages and for medical professionals ([11:19]).

5. Clinician and Provider Tools

• ALS Academy Training Modules:
  • Resources specifically for PTs and OTs, including guidance on writing treatment plans/goals tailored to progressive diseases ([12:42], [13:40]).
  • Help address the challenge of justifying skilled therapy to insurers when progress may be limited ([13:40]).
  • Quote: “It gives you kind of guidances of how…treatment plan should be written, how goals should be written. Because ALS as it is a degenerative disease… progress isn’t necessarily expected.” – Kyle ([13:40])
• Caregiver Training Videos:
  • Visualization aids for safe transfers, positioning, and at-home safety ([15:17]).

6. In-person Community & Awareness Events

• Events:
  • Local and regional walkathons, 5Ks, and other events to raise awareness and funds ([16:42]).
  • Event information filtered by location on the ALS.org website.

7. Research and Advocacy Opportunities

• Patient Participation:
  • Encouragement to enroll in the national registry for research updates and clinical trial opportunities ([18:13]).
  • Research teams available at certified clinics to help patients navigate eligibility for clinical trials.
• Advocacy:
  • Engagement with the ALS Association helps advance funding and policy efforts across the US ([21:04], [21:46]).

8. Underutilized Resources

• Insurance Navigator:
  • Dedicated support line for insurance questions, denial assistance, plan comparisons, and benefits guidance ([19:57], [20:35]).
  • Quote: “Just pick up the phone and call the…the ALS insurance benefits line and there will be somebody there to guide you and to help you and also to advocate.” – Lauren ([19:57])

9. Messages for Patients, Families, and Clinicians

• Positive Attitude is Key:
  • Lauren: “The attitude that you have towards living and adjusting the way that you’re living…not everything is going to be the same…But, you know, leaning on your caregiver, leaning on a friend, having conversations with people and finding some light and some joy is what you’re going to want to do…” ([22:21])
• Focus on Participation and Life Enjoyment:
  • Kyle: “…their life is not over. There’s still life to live, and it’s okay to go out and do those things that you want to do. And like Lauren was saying, if you need to use a cane…that’s okay…our goal is to help people do as much as they can and enjoy life as much as they can.” ([24:23])

Memorable Quotes & Moments

• “Nobody expects that they’re going to get ALS. …then they find out that they have a limited amount of time to live. That’s very shocking and very sad. …my role is to provide them with as much support as possible.” – Lauren ([01:44])
• “We tell them just to take everything step by step…whatever you have questions on, that’s what we’re here for.” – Lauren ([04:14])
• “We want to make it so they don’t have to fully rely on the caregiver. …just trying to make that possible for as long as possible is our mission.” – Lauren ([05:50])
• "Caregivers…have each other and can lean on one another for those types of things." – Lauren ([07:11])
• “Anything to further augment our education and bring us into the home a little bit to help just carry over things that we’re teaching. Those sound like excellent resources.” – Ken ([16:08])
• "By signing up for the national registry, it's making a big step for everyone…" – Lauren ([18:49])
• “It’s okay to take time and go have fun. …I think that's the point of…all that we're doing: so they can have an enjoyable life and spend time with those that they love and do things that they want to do.” – Kyle ([24:23])

Timestamps for Major Segments

• 00:00–01:44 — Introduction to show, guests, and episode theme
• 01:45–04:14 — Lauren describes her role and first contact with newly diagnosed ALS patients
• 04:14–05:50 — Support groups and resources for newly diagnosed individuals
• 05:51–07:11 — Support for caregivers, including grants and peer groups
• 07:11–10:09 — Geographic variation in resources, and how families connect with the ALS Association
• 10:10–12:17 — Navigating ALS.org; resource portal for patients/caregivers/providers
• 12:18–15:17 — Kyle on clinician resources; ALS Academy overview
• 15:18–16:42 — Free education modules, caregiver training videos
• 16:43–18:13 — Walkathons, awareness events, and community involvement
• 18:13–19:41 — Research participation and national registry
• 19:57–21:04 — Underutilized resources: insurance navigator and advocacy
• 21:05–24:16 — Parting messages: focus on attitude, participation, and quality of life
• 26:37–28:09 — Guests share about life outside work: beach, family, PhD pursuits
• 28:33–31:07 — Episode wrap-up and informal post-recording banter

Final Takeaways

• The ALS Association provides a comprehensive support system, from immediate post-diagnosis guidance to specialized caregiver support, equipment, financial assistance, and research engagement.
• Multidisciplinary clinics are highly recommended for holistic, coordinated care.
• Free educational resources and training modules are available for both families and medical providers, aiming to empower all stakeholders involved.
• Maintaining optimism, fostering participation in life, and creating a strong support network can help individuals and families navigate the challenges of ALS.

For More Information:
Visit ALS.org to find resources, connect with your local chapter or care manager, volunteer, and access the latest research opportunities.

Credits:
Podcast by the Academy of Neurologic Physical Therapy Degenerative Diseases Special Interest Group.
Special thanks to guests Lauren Lamar, Kyle Vasher, and the ANPT podcast production team.