4D: Deep Dive into Degenerative Diseases – Episode 60

AT/SWM SIG Collaboration: Seating for People with ALS
Host: Chris Burke (A, PT, Chair of DD SIG)
Guests: Wendy Kester (B, PT, Assistive Technology Specialist), Pam Glaser (C, OT, ATP)
Date: February 21, 2026

Episode Overview

This special collaborative episode brings together experts from the Degenerative Diseases Special Interest Group (DD SIG) and the Seating and Wheeled Mobility Special Interest Group (SIG) to explore best practices, challenges, and advancements in seating and wheeled mobility solutions for individuals with ALS (Amyotrophic Lateral Sclerosis). The discussion centers on assessment, selection, and customization of wheelchairs and supportive technologies, with a focus on maximizing independence, comfort, and quality of life for ALS patients.

Key Discussion Points & Insights

1. Guest Introductions & Expertise in Seating and Mobility

• Wendy Kester: Shares passion for neurology and her journey from inpatient rehab to outpatient specialization in assistive technology, emphasizing her “wheelchair nerd” status and commitment to preserving patient independence ([01:24]).
• Pam Glaser: 33+ years at Houston Methodist; 29 years with the ALS clinic, 20 years in chair prescription. Highlights the critical role of assistive technology in practice ([02:05]).

2. Role and Relevance of ATP and CRT Certifications

• RESNA and ATP: Both guests hold the Assistive Technology Professional (ATP) certification and explain its requirements: board exam, required hours, and renewals similar to clinical licensure ([02:56], [03:27]).
• CRT (Complex Rehab Technology): Advanced certification supports work with Medicare "Group 3" power chairs, alternative drive systems, and seating solutions ([03:27]).

3. Why Power Mobility Is Critical for ALS Patients

• Need for Power Mobility: Manual wheelchairs are actively discouraged due to muscle preservation; power chairs are essential to prevent falls, aid respiratory function, and maintain holistic well-being ([04:41], [06:12]).
• Early Intervention: Referral for mobility tools should occur at the first sign of falls, progressing symptoms, or loss of functional independence ([05:19], [08:30]).
  • “If you’re homebound because of your disease and your mobility, we need to discuss... [power mobility]” – Pam ([05:19]).

4. Assessment, Prescription, and Customization

• Forward Planning: Clinicians must balance ordering what is medically necessary at the moment with anticipating progression ([06:48], [07:36]).
• Joysticks as First Step: Most ALS patients start with joystick controls, with the provision for future upgrades to alternative drives ([06:48]).
• Tracking Explained: Programming that keeps the chair moving straight—important when using alternative drives ([07:38]).
• Transportation Concerns: Not all patients get vans; alternative transport solutions include accessible cabs, van-sharing networks, and portable/foldable chairs via organizations like Team Gleason ([08:48]).

5. Home & Environmental Adaptations

• Measuring & Modifications: Doorways, steps, thresholds, and bathroom access are evaluated remotely; support organizations supply ramps and other home modifications ([10:09]).
• Tip: Remove bathroom doors/hardware for extra space.
  • “Take the door off the hinges, that gives them two more inches.” – Pam ([10:51])
• Simple Tools: Affordable doorway/threshold ramps, smart-home modifications (e.g., remote door openers), and resource directories increase independence ([11:09], [12:00]).
• “ALS association... started doing virtual assessments... and send an entire detailed modification list.” – Pam ([12:00]).

6. Funding and Resources

• Insurance Limitations: Insurance and Medicare only cover certain devices (chairs, speech, pulmonary); all home modifications, vans, and exterior aids need alternative funding ([13:49]).
• Community & National Funding:
  • ALS Association (ALSA), MDA ($1,000 annual grant), Team Gleason, Brigance Brigade, Les Turner Foundation, loan closets.
  • "Insurance doesn’t cover... anything in the bathroom also. Nothing with the vans. Nothing on the outside. No ramps..." – Pam ([13:57]).
• Start Early: Navigating sources is overwhelming; resource checklists and early education are invaluable ([14:16], [14:48]).

7. Virtual and Rural Support

• Virtual Assessments: Telehealth, virtual clinics, and online communities bridge gaps; registering with a specialist team—even once—opens doors to continued assistance ([15:19], [16:11]).
• Loan Closets: Loaner equipment is selectively adaptable; complex alternative drive controls are rarely set up on loaners ([19:19], [20:09]).

8. Individualizing Wheelchair Controls and Accessories

• Alternative Drive Controls: Head switches, knee switches, chin drives, “eye-gaze” control via speech devices, and new foot pedal drives are used as appropriate. Joysticks preferred first, but progression is planned ([20:41], [21:19], [18:25]).

  • "I had a gentleman type a whole book with his toes." – Pam ([18:54])
  • Eye-gaze explained: Device tracks eyes to control chair via directional arrows ([21:19]).

• Insurance Coverage for Technology: Eye-gaze & speech devices generally covered if prescribed medically ([22:12]).

• Customization is Crucial: Advanced technologies require specialists for assessment, fitting, and training. Not all options suit all patients, and documentation must rigorously justify each choice ([23:10], [31:29]).

9. Pressure Relief, Comfort, and Secondary Complications

• Skin and Pressure Injuries: Increase in pressure wounds among ALS patients, managed with air cushions (e.g., Quattro Select, Roho), supportive backs, and custom headrests ([23:10], [23:24]).
• Education for Patients/Caregivers: Frequent training on maintaining air cushions and performing pressure relief (e.g., tilting and reclining every 20 minutes for 2 minutes). Technology (Google timers, Alexa) helps remind patients ([25:00], [25:53]).
  • “Your wife is not sitting still ever—look at how many times she shifted and moved. You can’t do that as often. So you’ve got to build this into your day.” – Wendy ([26:46])
• Weight Loss and 24/7 Chair Use: ALS patients often lose weight rapidly and may sleep in their chairs for optimal comfort and pressure relief ([26:46], [27:06]).
  • “I have people who sleep in their chairs. They never leave their chairs 24/7.” – Pam ([27:06])
• Memory Seating Programs: Allows preset positions for pressure relief, social interaction, transfers. Needs regular revision as patient needs change ([27:34], [28:17]).

10. Advocacy and Documentation for Equipment Approval

• Medicare and Insurance: Seat elevators now covered; almost universal recommendation, but recline functions harder to justify (requires specific clinical indications, e.g., catheterization, spasticity) ([28:43], [29:37]).
• Documentation Challenges: Personalization and detailed rationale required for every chair feature to avoid denials. Must rule out less expensive alternatives ([31:16], [31:29]).
  • “You have to justify every single thing you’re putting on that chair.” – Chris ([31:29])
• Learning from Denials: AI increasingly used to process claims, so use exact clinical/research language in documentation and collaborate with suppliers/other clinicians ([30:41], [31:50]).

11. Professional Collaboration and Ongoing Learning

• Mentorship & Networking: Find local or virtual mentors; SIG groups are ready to help. Reach out for advice—even nationally ([32:20], [33:21]).
  • "It's really, really rewarding to be that person that someone... can come to you and get some advice." – Wendy ([32:20])
• Conferences and Continued Education: International Seating Symposium (ISS), RESNA—key for networking and learning about technology and best practices ([33:32], [34:10]).

Notable Quotes & Memorable Moments

• “We’re wheelchair nerds and finding mobility solutions to help people keep their independence. I love my job!”
  – Wendy ([01:24])

• "Never push a manual chair. I don't even want them propelling it with their legs. I want them to save their muscles and their strength. And so I always recommend power."
  – Pam ([06:12])

• “If you’re homebound because of your disease and your mobility, we need to discuss [power mobility].”
  – Pam ([05:19])

• “Take the door off the hinges, that gives them two more inches. Right. Take the door frame off the frame off the door, and that may give them another inch or two.”
  – Pam ([10:51])

• "Insurance doesn't cover... anything in the bathroom also. Nothing with the vans. Nothing really on the outside. No ramps. They only do the walking devices, wheelchairs, speech devices, pulmonary stuff. They don't provide anything else. You have to use your outside organizations."
  – Pam ([13:57])

• "I had a gentleman type a whole book with his toes... he drove like 15 years like that."
  – Pam ([18:54])

• “It’s really, really rewarding to be that person that someone... can come to you and get some advice.”
  – Wendy ([32:20])

• "My door is always open."
  – Pam ([33:21])

Key Timestamps for Important Segments

| Topic/Segment | Timestamp | |-------------------------------------------------------------------|------------| | Guest Intros & Becoming “Wheelchair Nerds” | 01:24-02:42| | ATP/CRT Certification Overview | 02:56-04:31| | Importance of Power Wheelchairs for ALS | 04:41-06:12| | Early Referral Triggers & Muscle Preservation | 05:19-06:12| | Customizing Devices for Disease Progression | 06:48-07:36| | Environmental & Transport Adaptations | 08:48-09:59| | Home Modification, Ramps, & Virtual Assessments | 10:09-12:38| | Funding & Organizational Resources | 13:49-14:48| | Virtual Support, Loan Closets, and Access in Rural Areas | 15:10-16:30| | Custom Controls: Joystick, Alternative Drives, Eye-Gaze | 20:41-22:24| | Pressure Relief, Skin Care, Education | 23:10-27:58| | Memory Seating, Transfers, and Social Elevation | 27:34-28:54| | Insurance/Medicare, Documentation, Overcoming Denials | 28:43-31:50| | Professional Collaboration & Networking Opportunities | 32:20-34:22|

Additional Resources & Recommendations

• ALS Association & MDA: Funding, equipment grants, virtual home assessments
• Team Gleason, Brigance Brigade, Les Turner Foundation: Equipment loans and home modification assistance
• Seating & Wheeled Mobility SIG, DD SIG: Mentors and clinical networking
• International Seating Symposium (ISS), RESNA: Professional events for tech updates, education, and networking

Tone and Final Thoughts

The conversation is collegial, passionate, and overflowing with practical wisdom. Both guests share a deep empathy for people living with ALS, focusing on proactive education, advocacy, and collaborative innovation. Their encouragement for ongoing professional development, networking, and resourcefulness ensures listeners—whether clinicians, patients, or families—walk away empowered to seek optimal mobility solutions.

Memorable Closing

• On why they're so passionate:
  "Once you get into it, it's like a bottomless pit, a black hole. You just get sucked in. And there's so much information. It's so much fun." – Pam ([37:13])