5 Authentic Benefits of Seeing A Movement Disorder Specialist

What Is A Movement Disorder Specialist?

You’ve been diagnosed with Parkinson’s Disease and in the whirlwind after the diagnosis, you need to determine who is going to manage your ongoing care.

Your doctor, friend, or other Parkinson’s patients tell you, “You need to see a Movement Disorder Specialist (MDS) to have the best possible outcome.”

You think to yourself, “What Is A Movement Disorder Specialist?” and “Why can’t my Primary Care Physician (PCP) or a Neurologist manage my care?”

Good questions! Let’s start with the first question “What is a Movement Disorder Specialist?”

A Movement Disorder Specialist is a Neurologist who has undergone an additional 1 to 2 years of training on Parkinson’s Disease and other Movement disorders.

Because of this additional training on Parkinson’s Disease, they have an in-depth knowledge of the disease state and are best suited to treat Parkinson’s Disease.

Now that we know what an MDS is, let’s answer the second question, “Why can’t my PCP or a Neurologist manage my care?

Movement Disorder Specialists differ from general neurologists, who typically care for patients across a broad spectrum of neurological diseases, as many as 75 or more, and therefore may not have the same extensive knowledge as a Movement Disorder Specialist.

The same holds true for your Primary Care Physician who treats both acute and chronic conditions and may not have the in-depth knowledge to treat the complexities of Parkinson’s disease.

Now let’s look at the benefits of seeing an MDS.

5 Benefits of Seeing a Movement Disorder Specialist

The 5 Benefits of Seeing A Movement Disorder Specialist versus a Neurologist or Primary Care Physician include

1. Specialized and Advanced Training
2. Treat Both Motor and Non-Motor Symptoms of Parkinson’s Disease
3. Manage and Refine Parkinson’s Medications to Ensure the Best Outcomes
4. Involved in Clinical Research so they are aware of the new medications and technologies
5. Work with Multi-Specialty Teams including Physical, Occupational, and Speech Therapists and Mental Health Professionals.

I will go into more detail on the benefits of seeing an MDS, but I first wanted to share data on how patient care from an MDS is under-utilized.

Why? Because patients cannot take advantage of the benefits achieved by seeing an MDS if they do not have access to them.

Movement Disorder Specialist – Access to Medical Care

While seeing an MDS provides many benefits, the number of Parkinson’s patients whose care is being managed a MDS is relatively low.

In fact, in the study Care Access and Utilization Among Medicare Beneficiaries Living With Parkinson’s Disease, npj Parkinson’s Disease, Pearson, et. al, 2023 based on 2019 Medicare data representing 90% of Americans Living with Parkinson’s revealed.

• Only 9% of people with PD received care that year from a Movement Disorder Specialist.
• 51% of Medicare Beneficiaries with Parkinson’s Disease received care from a general neurologist.
• 40% of patients with PD were receiving care from a Primary Care Physician or received no physician care at all.

The study goes on to cite that the number of PD patients who received care from a Physical, Occupational or Speech Therapist was very low. According to the study, only 20% of people with PD saw a physical therapist.

In addition, 53% of people living with Parkinson’s have been diagnosed with Depression and/or Anxiety, yet only 2% were seen by a psychologist and only 4% were evaluated by a psychiatrist.

Source: Pearson, C., Hartzman, A., Munevar, D. et al. Care access and utilization among Medicare beneficiaries living with Parkinson’s disease. npj Parkinsons Dis. 9, 108 (2023). https://doi.org/10.1038/s41531-023-00523-y

One of the reasons for the lower number of visits to a Movement Disorder Specialist is the total number of Movement Disorder Specialists practicing in the United States is still relatively small.

To address the critical shortage of MDSs’ the Michael J Fox Foundation started the Edmond J. Safra Fellowships in Movement Disorders.

This fellowship program began in 2014 as a means to increase the number of Movement Disorder Specialists, and to provide a network of doctors whose specialty is on Parkinson’s Disease.

As of 2021, the program has trained 27 new Movement Disorder Specialists, with another 72 slated to graduate from the fellowship program by 2028 (Source: Michael J Fox Foundation).

An interesting statistic I saw when researching this article came from the Michael J. Fox Foundation website. It noted that Parkinson’s Specialists see an average of 600 patients with Parkinson’s Disease as well as other movement disorders every year.

Now that we have a better understanding of Parkinson’s patient’s medical care access to a Movement Disorder Specialist, let’s discuss the 5 Benefits of using an MDS.

5 Benefits of Seeing a Movement Disorder Specialist

Specialized and Advanced Training

As mentioned earlier, Movement Disorder Specialists are Neurologists through their medical training.

However, to become an MDS, they do a Fellowship that requires an additional 1-2 years of training focused specifically on Parkinson’s and other Movement Disorders.

So, let’s follow their path to becoming a Movement Disorder Specialist so you get a feel for the amount of education and the time required to become an MDS.

Neurologist’s Educational Requirements

In order to become a Neurologist, you need to successfully complete the following educational requirements.

• Graduate and obtain a 4-year undergraduate college degree – Bachelor of Science, B.S, Bachelor of Liberal Arts, B.A.
• Attend and graduate from a 4-year Medical School. The Medical School can be allopathic (obtain a Medical Doctor, MD degree) or osteopathic (Doctor of Osteopathy, DO degree).
• Attend a 1-3 year residency program
  • 1 year of Internal Medicine Residency
  • 2 years for pediatric training if you want to become a Children’s Neurologist
  • At least 3 years of specialized training in neurology.

Once they have completed these education requirements, they must pass a written examination to become board-certified.

Once they pass the exam and have met all of the educational requirements, they become a board-certified Neurologist and can begin practicing medicine in their own practice or a group, etc.

Source: How to Become a Neurologist, American Academy of Neurology

Movement Disorder Specialist – Educational Requirements

An MDS completes all of the same training above for a general Neurologist but decides to do an additional 1-2 year Fellowship in Movement Disorders.

What does the additional training involve?

Based on the article, What Do Movement Disorder Specialists Do?, American Parkinson’s Disease Association (APDA), the additional training involves

• Education and Training in Prescribing PD Medications
  • According to the APDA, there are 23 medications approved for use to treat Parkinson’s Disease.
  • Training and education on these drugs and how to prescribe them is an essential part of their training.
• Managing the side effect profiles of PD Medications
  • Many of the PD drugs have potential side effects. Understanding the side effect profiles as part of the training allows them to help mitigate potential side effects leading to a better quality of life.
• Training on the Non-Motor Symptoms of Parkinson’s
  • PD patients can have a number of non-motor related symptoms which can include sleep difficulties, hallucinations, constipation, depression & anxiety.
  • Additional training provides them with the experience they need to manage non-motor symptoms.
• Training on giving Botulism injections for drooling and dystonia
• Training on Deep Brain Stimulation to learn how to program and adjust the stimulator after surgery.
• Training on Clinical Study Design and Recruitment so they can get involved in clinical research.

Source: What Do Neurologists Do? American Parkinson’s Disease Association

Hopefully, this gives you a flavor of the additional education & training the Movement Disorder Specialists have versus a general neurologist.

Movement Disorder Specialist – Treating Motor and Non-motor Symptoms

One of the additional training focus areas for Movement Disorder Specialists that we outlined above is the clinical experience they receive with prescribing Parkinson’s drugs for both motor and non-motor symptoms.

For those of us with Parkinson’s, we are familiar with the motor symptoms associated with Parkinson’s. For friends and family members who aren’t as familiar with the 4 cardinal symptoms used to diagnose Parkinson’s’, here they are

• Tremors
• Rigidity
• Bradykinesia (Slowness of Movement)
• Postural Instability (balance issues)

In addition, there are other motor symptoms such as dyskinesia (uncontrollable rhythmic movements) and dystonia (muscle cramping) to name a few.

There are 27 drugs on the approved Food and Drug Administration (FDA) drug list for Parkinson’s. Some of these contain levodopa, and some are dopamine agonists, which act like dopamine but do not break down into dopamine.

Finally, some of the drugs are companion drugs that are used in conjunction with Levodopa and Dopamine Agonists. Amantadine would be an example.

The additional training that a Movement Disorder Specialist undergoes helps them to become familiar with the drugs, in terms of

• Benefits – they provide to the patient in terms of improving their quality of life.
• Side Effects – which can be debilitating so it is important for the MDS to manage side effects.
• Warnings – For example, dopamine agonists are known for potentially causing obsessive-compulsive behaviors that can include hypersexuality, overeating, and excessive shopping. MDSs get specific training on helping to mitigate these behaviors.
• Dosing Regimen
• Concomitant Drugs – knowing what drugs may interact with others.

In addition to the approved drugs for Parkinson’s, there is also a plethora of drugs on the market to treat non-motor symptoms.

Many patients report that non-motor are just as or more debilitating than motor symptoms. Some of the non-motor symptoms that a Movement Disorder Specialist receives additional training on include

• Sleep Issues/Insomnia
• Sleep Apnea
• Depression and Anxiety
• Constipation
• Urinary Incontinence
• Orthostatic Hypertension – getting light-headed when standing

The benefit that the Movement Disorder Specialist has versus a general neurologist is the Fellowship in Movement DIsorders enables them to learn when, how much, and what the expected benefits and side effects of a drug for treating Parkinson’s are on a much deeper level than the neurologist.

In addition, during their Fellowship, Movement Disorder Specialists often interact with specialists in other fields of study, such as Behavioral Health and sleep specialists to aid in the treatment of non-motor symptoms.

They can use these relationships to help provide the patient with the best care for helping to improve their quality of life.

Movement Disorder Specialist – Manages Medications to Realize the Best Outcomes

During their Fellowship to become a Movement Disorder Specialist, in-depth training was provided on the drugs used to treat Parkinson’s Disease.

Now, that the MDS has a firm grasp on the medications, it’s time to put that knowledge into practice. The MDS will examine and evaluate Parkinson’s patients and prescribe medications that provide the best quality of life with the least amount of side effects.

During the Fellowship they will often have the opportunity to see their patients at least 4 times over the course of their study. This assumes that they see the patient every six months.

This provides them the opportunity to evaluate the patient’s progress and discuss any side effects they may be experiencing.

They can then make necessary adjustments to dosing regimens, timing of medications, and additions to medications as necessary.

On a personal note, I am seen by a Movement Disorder Specialist at the University of Maryland Neurology Clinic. I decided to go there because they conduct research and are familiar with the newest medications and technologies.

In addition, it gives me the opportunity to participate in Clinical Research to help advance learning in the field of Parkinson’s Disease.

During my visits over the last 13 years, I was fortunate to be evaluated by 2 Fellows who were in training to become Movement Disorder Specialists.

The Fellow would conduct an initial assessment and examination and then my Movement Disorder Specialist would participate in the examination after having convened with the Movement Disorder Specialist on their learnings during the examination.

I’m grateful for the opportunity to be a patient for a Fellow in training so they can learn and become a Movement Disorder Specialist and help others with Parkinson’s.

Movement Disorder Specialist – Involvement in Clinical Research

As part of their training, Fellows in a Movement Disorder program are often involved in clinical research, because most Fellowships are at a University Hospital or Clinic where clinical research is conducted.

They receive training in clinical research study design and recruitment, data collection, analysis, and reporting. Many may also be involved in publishing research articles for Parkinson’s journals or presenting their findings at a Paekinson’s conference.

Participating in clinical research allows them to stay current on the latest medications, technologies, and trends in the Movement Disorder field.

Training on clinical research provides the Movement Disorder Specialist a holistic view of the disease state which can better help them manage their patient’s symptoms and disease progression.

As mentioned above, my care is managed at the University of Maryland. I have been fortunate enough to participate in a number of clinical trials to help advance Parkinson’s research.

I participated in a 6-month double-blind placebo-controlled Phase III study for a drug that was being tested for the market. I stayed on and participated in the 12-month open-label portion of the study. The drug was approved by the FDA about 2 years ago.

I feel a sense of satisfaction that I was able to participate in a study that resulted in a new drug to help people control their Parkinson’s Symptoms.

I have been able to participate in a number of other non-medication studies, some involving new technology to help with Parkinson’s symptoms.

While it is a personal choice to participate, if you get the opportunity to participate in clinical research, you can learn a lot as well as help others in the process.

To learn more about clinical research read my articles on exercise and fatigue which are based on the results of clinical research.

Movement Disorder Specialist – Working with Multi-functional Teams

As part of their overall training, and since Parkison’s is a multi-faceted disease with many types of symptoms both motor and non-motor it is important that an MDS works across specialties to provide the patient the best quality care.

As an MDS evaluates a patient they may see the need to refer them to other specialty areas to address specific care needs.

The MDS builds relationships with professionals in other specialties such as Physical, Occupational, and Speech, Therapy, Mental and Behavioral Health, Mobility Therapies, and Surgeons for procedures such as Deep Brain Stimulation surgery.

They can use the relationships they built when they enter private practice.

While a general neurologist may refer you to other specialists, a Movement Disorder Specialist often works with these groups on a daily basis because their patients are being evaluated for a movement disorder.

Summary

A general neurologist can provide quality care when treating patients with Parkinson’s.

However, because they see so many patients presenting with other disease states, such as Epilepsy and Multiple Sclerosis, they often do not have the in-depth knowledge on Parkinson’s that a Movement Disorder Specialist has acquired.

An MDS has two years of focused, extensive training on Parkinson’s and other Movement Disorders which gives them the knowledge and experience to provide high-quality care to give their patients the best quality of life.

If you are not been seen by a Movement Disorder Specialist for your care, it is highly recommended that you explore the opportunity to have one manage your care.

They have the background and experience to provide you with a great quality of life.

I’ve been managed by a Movement Disorder Specialist for the past 13 years and I’m grateful for the great quality of life I have lived.

If interested in learning more about my Parkinson’s Journey, read my book on Amazon

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Post written by Chris Kustanbauter, Liveparkinsons.com. I reside in York, PA with my wife and 2 Adopted rescue Boxer dogs, Duke and Katie. For additional articles visit my Blogs page. Please contact me with questions or comments on my Contact Me page