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PubMed This is a summary of 10 peer-reviewed journal articles Updated
Neurology

Building Your Care Team and Planning for the Future

At a Glance

The gold standard for managing Multiple System Atrophy - Parkinsonian type (MSA-P) is a multidisciplinary team led by a movement disorder specialist. Integrating palliative care early can help manage complex symptoms, and caregivers must prioritize their own support to prevent burnout.

Because Multiple System Atrophy - Parkinsonian type (MSA-P) affects so many different systems in the body, no single doctor can manage it alone. The “gold standard” for care is a multidisciplinary approach—a team of specialists working together to support your movement, autonomic functions, and overall quality of life [1][2].

Your Core Care Team

A robust care team for MSA-P typically includes several specialized professionals [3]:

  • Movement Disorder Specialist (MDS): A neurologist with extra training in atypical parkinsonism who acts as your “team captain.”
  • Autonomic Specialist or Cardiologist: To manage blood pressure fluctuations and fainting [3].
  • Urologist: To handle bladder retention or urgency [4].
  • Speech-Language Pathologist (SLP): Essential for early monitoring of swallowing safety (dysphagia) and voice strength [3].
  • Physical and Occupational Therapists (PT/OT): To help maintain mobility and adapt your home environment for safety [3].
  • Palliative Care Specialist: A symptom-management expert who focuses on comfort and quality of life [5].

Vetting Your Specialist

Because MSA-P is rare, you have the right to ensure your doctor has the necessary expertise. When meeting a specialist, consider asking:

  1. How many patients with MSA do you currently treat?
  2. Are you familiar with the 2022 Movement Disorder Society (MDS) diagnostic criteria? [6]
  3. How do you coordinate with physical and speech therapists who have experience in neurodegenerative disorders? [3]

Preparation for Your First Visit

To get the most out of your specialist appointments, bring the following “artifacts”:

  • Imaging Files: Bring a physical disc or USB drive with the actual DICOM image files from your MRI, not just the written radiologist report [6].
  • Medication Logs: A detailed list of what you’ve taken (especially levodopa) and exactly how you responded to it [6].
  • Autonomic Diary: A 3-day log of blood pressure readings taken while lying down and immediately after standing.

The Role of Early Palliative Care

A common misconception is that palliative care is only for the end of life. In MSA-P, current consensus recommends integrating palliative care early in the journey [5][7].

Palliative care specialists are experts at managing complex symptoms like pain, sleep issues, and anxiety that other doctors might overlook [8]. They also help you navigate Advance Care Planning (ACP)—the process of documenting your medical preferences and choosing a healthcare proxy while you can still communicate clearly [9][10].

Supporting the Caregiver

Because MSA-P can progress more rapidly than typical Parkinson’s, the physical and emotional toll on caregivers is significant [1]. It is vital for caregivers to build their own support network. This might include:

  • Psychotherapy: To process the “diagnostic whiplash” and grief that often accompany an MSA diagnosis [3].
  • Respite Care: Scheduling regular time away from caregiving duties to prevent burnout and maintain personal well-being.
  • Support Groups: Connecting with organizations like the Multiple System Atrophy Coalition or MSA Trust to find a community that understands the unique challenges of this condition.

Common questions in this guide

Which doctors should be on my MSA-P care team?
A strong MSA-P care team is usually led by a Movement Disorder Specialist. You will also need an autonomic specialist or cardiologist, a urologist, a speech-language pathologist, physical and occupational therapists, and a palliative care specialist to manage your diverse symptoms.
When should I start palliative care for MSA-P?
Current medical consensus recommends adding a palliative care specialist early in your diagnosis, not just at the end of life. They are experts in managing complex symptoms like pain, sleep issues, and anxiety, and can guide you through advance care planning.
What should I bring to my first specialist appointment?
You should bring the actual DICOM image files from your MRI on a disc or USB drive, rather than just the written report. You should also bring a detailed log of your medication responses, particularly to levodopa, and a 3-day diary of your blood pressure taken while lying down and standing.
What support is available for MSA-P caregivers?
Because MSA-P progresses quickly, caregivers face significant physical and emotional demands. It is essential to build a support network that includes psychotherapy, condition-specific support groups, and scheduled respite care to prevent caregiver burnout.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.What percentage of your practice is dedicated to atypical parkinsonism like MSA-P?
  2. 2.Do you have a direct referral network for specialized autonomic testing, urologists, and speech therapists?
  3. 3.How do you prefer to manage complex symptoms like stridor or neurogenic orthostatic hypotension?
  4. 4.At what point do you typically recommend integrating a palliative care specialist for symptom management?
  5. 5.Can you provide a specific contact within your office for coordinating my care between different specialists?

Questions For You

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References

References (10)
  1. 1

    A strategic approach of the management of sleep-disordered breathing in multiple system atrophy.

    Laga A, Bauters F, Hertegonne K, et al.

    Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine 2025; (21(4)):703-711 doi:10.5664/jcsm.11472.

    PMID: 39539061
  2. 2

    Epigallocatechin gallate in multiple system atrophy (PROMESA).

    Jellinger KA

    Annals of translational medicine 2019; (7(Suppl 8)):S278 doi:10.21037/atm.2019.11.141.

    PMID: 32015997
  3. 3

    Therapeutic Management of the Overlapping Syndromes of Atypical Parkinsonism.

    Giagkou N, Stamelou M

    CNS drugs 2018; (32(9)):827-837 doi:10.1007/s40263-018-0551-3.

    PMID: 30051337
  4. 4

    Urodynamic Evaluation in Multiple System Atrophy: A Retrospective Cohort Study.

    Eschlböck S, Kiss G, Krismer F, et al.

    Movement disorders clinical practice 2021; (8(7)):1052-1060 doi:10.1002/mdc3.13307.

    PMID: 34631941
  5. 5

    Palliative Care Aspects in Multiple Sclerosis.

    Mercadante S

    Journal of pain and symptom management 2024; (67(5)):e425-e437 doi:10.1016/j.jpainsymman.2024.01.006.

    PMID: 38219965
  6. 6

    The Movement Disorder Society Criteria for the Diagnosis of Multiple System Atrophy.

    Wenning GK, Stankovic I, Vignatelli L, et al.

    Movement disorders : official journal of the Movement Disorder Society 2022; (37(6)):1131-1148 doi:10.1002/mds.29005.

    PMID: 35445419
  7. 7

    A consensus review on the development of palliative care for patients with chronic and progressive neurological disease.

    Oliver DJ, Borasio GD, Caraceni A, et al.

    European journal of neurology 2016; (23(1)):30-8 doi:10.1111/ene.12889.

    PMID: 26423203
  8. 8

    Integration of Early Specialist Palliative Care in Cancer Care and Patient Related Outcomes: A Critical Review of Evidence.

    Salins N, Ramanjulu R, Patra L, et al.

    Indian journal of palliative care 2016; (22(3)):252-7 doi:10.4103/0973-1075.185028.

    PMID: 27559252
  9. 9

    Early palliative care for adults with advanced cancer.

    Haun MW, Estel S, Rücker G, et al.

    The Cochrane database of systematic reviews 2017; (6()):CD011129 doi:10.1002/14651858.CD011129.pub2.

    PMID: 28603881
  10. 10

    Current practice of hospital-based palliative care teams: Advance care planning in advanced stages of disease: A retrospective observational study.

    van Doorne I, Willems DL, Baks N, et al.

    PloS one 2024; (19(2)):e0288514 doi:10.1371/journal.pone.0288514.

    PMID: 38422038

This page is for informational purposes only and does not replace professional medical advice. Always consult your movement disorder specialist or multidisciplinary care team about your specific MSA-P management plan.

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