How Does Your Movement Disorder Specialist Help with Your Parkinson’s?

Key Takeaways

An MDS is a neurologist with advanced training in Parkinson’s. Because of this, they’re typically the lead clinician managing your Parkinson’s treatment specifically.
They monitor both movement symptoms and less obvious ones like sleep, mood, and thinking, catching issues early and individualizing your treatment.
Most people see their MDS every 3–6 months to monitor any changes and keep care on track. This is true even if your symptoms seem stable.

One of the most valuable members of your Circle of Care, a Movement Disorder Specialist (MDS) is basically your Parkinson’s-specific expert. Typically, they’re the main person treating your Parkinson’s and adjusting medications, and they may even be brought in to confirm your initial diagnosis.

Below, we break down what an MDS does, how often to see them, what to ask during appointments, and what to expect during your visits.

What Exactly Is an MDS?

At the most basic level, a Movement Disorder Specialist is a neurologist who has completed additional fellowship training in conditions that affect movement. These include:

Parkinson’s disease
Dystonia
Essential tremor
Multiple system atrophy (MSA)
Progressive supranuclear palsy (PSP)

A general neurologist can diagnose and treat Parkinson’s, but due to their additional training, MDSs bring a higher level of expertise and specificity to your care. MDSs typically practice at academic medical centers, specialty clinics, or large hospitals that focus on neurodegenerative disorders.

Your MDS’s Roles and Responsibilities

Okay, so an MDS is essentially a Parkinson’s expert. How does that translate to the kinds of care they provide for you?

When you see your MDS, you can expect them to focus on:

Advanced medication management. No two people react the same way to Parkinson’s medications, and there tends to be a decent amount of adjustment and attention paid to interactions between medicines. Your MDS is the one largely in charge of this, and you should always keep them informed of any changes in symptoms or responses to your medication.
Diagnosing atypical Parkinsonian conditions. Not all movement symptoms are caused by Parkinson’s disease. Some mimic Parkinson’s early on but progress differently and respond poorly to standard treatments. Your MDS is trained to recognize subtle differences to ensure you receive the correct diagnosis and the most appropriate care.
Evaluating and referring you for advanced treatments. As the disease progresses, your MDS will evaluate whether you’re a candidate for advanced treatments like Deep Brain Stimulation (DBS), a surgical option that can significantly improve motor symptoms in some patients. Your MDS will guide you through the decision process, make referrals to surgical teams, and help manage your care after procedures.
Providing you an up-to-date, individualized care plan. Again, Parkinson’s is different for everyone. Your MDS tailors a treatment plan to your symptoms, stage of disease, age, lifestyle, and personal goals. And since MDSs often practice in academic or research settings, they stay up-to-date with the latest studies and treatment guidelines, making sure your care reflects the most current understanding of the disease.
Coordinating your Parkinson’s care. Parkinson’s affects much more than just movement. You may need physical therapy for balance, speech therapy for voice changes, mental health support for mood changes, or social work guidance for long-term planning. Your MDS ensures everyone is working together, sharing information, and supporting your care in a unified, thoughtful way.

How Often Should You See Your Movement Disorder Specialist?

While everyone is different, most people with Parkinson’s benefit from seeing their MDS every 3-6 months.

Why so frequently? Even if things seem stable, regular follow-up is essential because many Parkinson’s symptoms progress slowly and subtly, and an MDS can often spot patterns before you’re fully aware of them.

Specifically, these regular visits allow them to monitor changes in your symptoms, adjust your medications if necessary, screen for side effects and non-motor symptoms, and continually reassess your treatment goals.

In fact, it’s actually recommended that you see your MDS more often if:

You’re newly diagnosed
Your symptoms are progressing quickly
You’re experiencing medication-related side effects
You’re considering advanced treatment options

What Should You Expect During a Typical Visit with Your MDS?

Your appointment may include a combination of physical assessments, symptom tracking, medication review, and planning.

Here’s what an MDS typically evaluates:

Motor Symptom Review

Bradykinesia (slowness of movement)
Tremor (often at rest)
Rigidity (muscle stiffness)
Postural instability
Freezing episodes

The MDS may use structured tools like the MDS-UPDRS scale to track changes.

Non-Motor Symptom Monitoring

Parkinson’s also affects:

Sleep
Mood (anxiety or depression)
Cognition
Digestion and bladder function
Fatigue and pain

These should be discussed and screened for at each visit, especially since they can be easily overlooked.

Medication Evaluation

Your MDS will assess how well your current medication plan is working. Common medications they manage include:

Levodopa/carbidopa
Dopamine agonists
MAO-B inhibitors
COMT inhibitors

They may adjust timing or dosage based on how your symptoms fluctuate throughout the day, aiming to reduce “off” periods or involuntary movements (dyskinesia).

What Are Good Questions to Ask Your MDS?

Your time with your MDS is valuable, so it helps to come prepared. Here are some questions that can help you better understand your condition and guide your care:

What is my specific type or stage of Parkinson’s?
Can you explain how the disease is affecting my brain and body?
Is it possible to predict how quickly my condition might progress?
What treatment options are available to me now?
What side effects should I watch for?
What happens if the medications stop working as well?
Would genetic testing or imaging help tailor my care?
Are there any clinical trials I qualify for?
How often should I follow up?
Are there physical, speech, or occupational therapists you recommend?
How can I manage non-motor symptoms like sleep problems or anxiety?
How should my caregiver prepare for future changes?
Where can I find reliable education and support resources?

What Kinds of Texts Can You Expect from Your MDS?

While most of the diagnostic and treatment planning work happens through regular conversations and physical exams, in some situations (such as if your symptoms are unclear or don’t follow the typical pattern) your specialist may order certain tests to gather more information or rule out other conditions.

These tests aren’t used to confirm Parkinson’s on their own, but they can help support the diagnosis or guide treatment decisions.

Here are a few examples:

DaTscan Imaging

A DaTscan is a specialized brain imaging test that looks at the dopamine system in your brain. It helps your doctor see whether dopamine transporters (proteins involved in movement regulation) are functioning normally.

Why it’s used: A DaTscan can help distinguish Parkinson’s disease from other conditions with similar symptoms, like essential tremor or drug-induced parkinsonism.

What it shows: Reduced dopamine activity in certain areas of the brain, which is commonly seen in Parkinson’s.

What it doesn’t do: It can’t tell you which kind of Parkinsonian condition you have, and it doesn’t confirm how fast your condition will progress.

Cognitive Screening Tools

While movement problems are the most visible signs of Parkinson’s, changes in thinking, memory, and attention can also develop. Because of this, your MDS may use short, structured tests to assess your cognitive function during appointments.

These may include:

MoCA (Montreal Cognitive Assessment)
Mini-Mental State Examination (MMSE)

Why they’re used: Early detection of cognitive changes helps with planning, safety, and treatment decisions.

What they show: Whether you might benefit from further testing, medication changes, or referrals to a neuropsychologist or occupational therapist.

Mood or Sleep Questionnaires

Depression, anxiety, apathy, REM sleep behavior disorder (acting out dreams), and daytime sleepiness are common non-motor symptoms of Parkinson’s. But they can be hard to recognize, especially if you’ve adjusted to living with them over time.

Your specialist may ask you to complete brief questionnaires to screen for these issues. These could include:

Geriatric Depression Scale (GDS)

Parkinson’s Disease Sleep Scale (PDSS)
Epworth Sleepiness Scale

Why they’re used: Mood and sleep problems can have a major impact on quality of life, but they’re treatable.

What they show: Whether medication adjustments, therapy, or further evaluation may be helpful.

The Bottom Line

Seeing a Movement Disorder Specialist is one of the best steps you can take to manage Parkinson’s disease. They offer deep expertise, consistent monitoring, and a proactive approach to care that evolves with you.

If you’re not already working with an MDS, ask your primary care doctor or neurologist for a referral. The earlier you bring one onto your care team, the better positioned you’ll be to manage symptoms, avoid complications, and preserve your quality of life.

The information on this website is sourced from reputable references and real patient experiences. However, it is meant for educational purposes only. For medical decisions, please consult a healthcare professional.