PLS Community & Support Groups
PLS is rare. Depending on where you live, you may not know anyone else who has it. Your neurologist may have seen only a handful of PLS patients. The people around you — however supportive — cannot quite understand what it feels like to live in a body that is changing this slowly, this relentlessly, and with this much uncertainty. Finding others who do understand matters. This page lists the communities where you can find them.
Why community matters for a rare disease
PLS represents roughly 1–4% of all motor neuron disease cases. Most of the large ALS organizations, clinics, and support structures were built around a patient population that is many times larger. This means PLS patients often end up in settings designed for ALS — receiving resources and information calibrated for a different disease, with a different trajectory, different priorities, and different emotional weight.
In that context, connecting with other PLS patients is not a nice-to-have. It is a practical act of self-preservation. Other PLS patients have navigated the same diagnostic delay, heard the same "it's like ALS" conversations, had to explain what PLS is to their GP, dealt with the same spasticity management challenges, and found ways to adapt their lives over years and decades rather than months. That shared knowledge and shared experience is not available anywhere else.
Research on rare disease consistently shows that peer support reduces isolation, improves psychological wellbeing, and helps patients make more informed decisions about their care. One study found that the greatest unmet needs for PLS patients are for mobility assistance and home help — and that peer communities are often where patients first learn what resources and adaptations are available to them.
PLS Friends
PLS Friends is the primary dedicated online community for people living with PLS. It is a patient-run community specifically for PLS — not ALS, not MND broadly — focused on connecting people who share this particular diagnosis.
The community is valuable precisely because it is PLS-specific. When you post a question about spasticity management, medication side effects, or navigating a new symptom, the people responding are dealing with the same disease at roughly the same pace. The perspective is different from what you get in ALS communities, where the urgency and timelines are entirely different.
Spastic Paraplegia Foundation
The Spastic Paraplegia Foundation (spasticparaplegia.org) serves both PLS and hereditary spastic paraplegia (HSP) patients. HSP and PLS share a clinical feature — progressive upper motor neuron spasticity, particularly in the legs — though they are genetically and mechanistically distinct. The Foundation provides:
- Information about drug treatment options for spasticity, covering multiple medications
- Connections to clinical experts and researchers in the UMN disease space
- Patient community resources and support group information
- Research updates on both conditions
If you find yourself navigating the PLS-HSP distinction — or if your neurologist has discussed both diagnoses — the Foundation is worth knowing about. The spasticity management resources are directly applicable to PLS regardless of which label you carry.
ALS Association PLS Support Group
The ALS Association runs a dedicated PLS support group — separate from its ALS patient communities — which recognizes that PLS patients have distinct needs and a distinct disease experience. This is one of the more accessible entry points for newly diagnosed PLS patients in the United States, given the ALS Association's reach and chapter network.
The group provides peer connection, practical information, and access to the broader ALS Association support infrastructure — care services navigation, equipment lending, and connections to multidisciplinary clinics that see PLS patients. The ALS Association also connects patients to the PLS Natural History Study and other PLS-specific research opportunities.
PatientsLikeMe PLS Community
PatientsLikeMe has an active PLS community where patients share symptom tracking data, treatment experiences, and quality-of-life information. The platform's structure — where patients report on specific symptoms, medications, and interventions — means you can see how others with PLS are managing specific challenges and what they have found useful.
This is particularly valuable for treatment questions. If you are considering a change in baclofen dosing, want to understand the range of experience with tizanidine versus baclofen, or are curious about physical therapy approaches that others have found helpful, the aggregated patient-reported data on PatientsLikeMe provides a kind of informal evidence base from real PLS experience.
Online groups: Facebook and Reddit
Several active PLS patient communities exist on Facebook and Reddit. Searching for "Primary Lateral Sclerosis" or "PLS motor neuron disease" on Facebook will surface patient-run groups. These vary in quality and activity, but the most active ones provide a daily community of patients and caregivers sharing practical advice, emotional support, and updates on research.
The MND subreddit (r/mnd) includes PLS patients alongside ALS patients and covers a range of motor neuron disease topics. It can be a useful complement to PLS-specific groups, particularly for topics like equipment, care coordination, and disability benefits that apply across the MND spectrum.
A practical note: online groups have variable quality of medical information, and not everything posted is accurate. Use them for peer support, practical experience-sharing, and community — and verify medical information with your care team.
Mayo Clinic Connect
Mayo Clinic Connect hosts an online community forum specifically for PLS patients. Discussions cover treatment questions, symptom management, care coordination, and the experience of living with PLS. Because the forum is hosted by Mayo — one of the leading PLS research centers — it occasionally features participation from clinicians and researchers.
Patient stories
First-person accounts from PLS patients are scarce compared to ALS — a reflection of the disease's rarity and historically lower public profile. The accounts that do exist are valuable: they document what living with PLS actually looks like over years and decades, rather than the months-long trajectory that defines most MND narratives.
Phil's journey (ALS Society of BC)
Phil's story, published by the ALS Society of British Columbia, documents a PLS diagnosis that began with leg weakness and has progressed very slowly over years. It is a frank account of what the long arc of PLS looks like — not a crisis, but a sustained adaptation. Phil describes the diagnostic uncertainty, the challenge of explaining PLS to others, and the adjustments that accumulate over time. It is one of the most grounded patient perspectives on PLS available.
Sandy Brown — "Finding My Voice on the Pilgrim Path"
Sandy Brown's memoir of living with PLS, published in 2025, provides one of the most detailed first-person accounts of long-term life with PLS. The book covers diagnosis, adaptation, the psychological experience of a slowly changing body, and the process of finding meaning and community through a rare disease. It is worth reading if you want to understand what the longer arc of PLS experience looks like through someone who has lived it.
Peter (Healthtalk)
Healthtalk.org hosts a series of oral history interviews with people living with PLS. Peter's interview is one of the most detailed — covering his diagnosis experience, the daily reality of living with spasticity, and how he has adapted his life. Healthtalk's format is accessible and honest; it does not smooth over the difficult parts. The other interviews in the series (including James and Speedy) add additional perspectives on the range of PLS experience.
Thomas's story (ALS United Greater New York)
"Stronger Than the Setback" — published by ALS United Greater New York in 2026 — documents Thomas's PLS diagnosis and his experience navigating the ALS support system with a PLS diagnosis. His account highlights both the support that is available through ALS organizations and the ways those systems do and don't quite fit the PLS experience.
How to find local support
Because PLS is rare, local peer support — in the sense of in-person groups specifically for PLS — is often not available outside major metropolitan areas. The practical alternatives:
- ALS Association chapters: Many chapters run caregiver and patient support groups that include PLS patients. The PLS-specific needs differ, but the practical and emotional support can still be valuable.
- ALS clinics with PLS patients: The multidisciplinary ALS clinic that you may be attending will often have seen other PLS patients. Your social worker or coordinator there may be able to facilitate connections.
- Online communities as primary community: For most PLS patients, the most active PLS peer community is online. This is not a second-best option — it is simply where the PLS community exists, given the geographic dispersion of a rare disease.
- Rare disease networks: NORD (National Organization for Rare Disorders) lists PLS and connects patients to its broader rare disease community infrastructure.
Advocacy: getting PLS recognised as distinct
One of the ongoing challenges for PLS patients is being seen as a distinct population within the MND space — rather than simply as "ALS patients with a better prognosis." This distinction matters practically: for research funding, for clinical trial design, for care infrastructure, and for the development of PLS-specific outcome measures and treatment guidelines.
The 2020 consensus diagnostic criteria for PLS were an important step — they created a standardized definition that could be applied across research cohorts internationally. The PLS Natural History Study at Mayo Clinic and Johns Hopkins is building the data infrastructure that will make PLS-specific clinical trials possible. Participation in the Natural History Study, where you are eligible, is itself a form of advocacy — contributing to the research base that makes future treatment possible.
Patient advocacy through organizations like the ALS Association, Spastic Paraplegia Foundation, and NORD helps ensure that PLS remains on the agenda of funders, researchers, and policymakers. Adding your voice — whether through a patient registry, a support group, a published story, or participation in research — contributes to the visibility that rare diseases require to attract the attention they deserve.