The Benefits Of An Expert
General neurologists and specialists have a lot more experience diagnosing and treating Parkinsons than a general practitioner. Recent research underscores this point. A 2011 study showed that people newly diagnosed with Parkinsons who went to a neurologist lived longer than those who saw a primary care provider, they were less likely to need placement in a skilled nursing facility and they seemed less likely to have experienced injuries from falls.
Another study that year found that people diagnosed with PD by a neurologist were more likely to receive an anti-PD medication prescription immediately upon diagnosis the standard of care recommended by the American Academy of Neurology than those who were diagnosed by a non-neurologist.
Finding The Right Doctor For You
Even the most qualified doctor might not be right for you. You will probably see this doctor at least every few months once you start working together. You will see each other more often if you have problems. You need to feel comfortable with the doctor.
Dont be afraid to interview your doctor before you make your choice. Here are points to consider:
- Do you feel your doctor listens to you and lets you take an active role in your care?
- Is your doctor available when needed?
- How easy is it to contact your doctor?
- How long does it take for the doctor to call back?
- Does the doctor have a good support system to cover you when he or she is not available?
Dementia With Lewy Bodies
- Dementia with Lewy bodies is a progressive, neurodegenerative disorder in which abnormal deposits of a protein called alpha-synuclein build up in multiple areas of the brain.
- Dementia with Lewy bodies is second to Alzheimers as the most common cause of degenerative dementia that first causes progressive problems with memory and fluctuations in thinking, as well as hallucinations. These symptoms are joined later in the course of the disease by parkinsonism with slowness, stiffness and other symptoms similar to PD.
- While the same abnormal protein is found in the brains of those with PD, when individuals with PD develop memory and thinking problems it tends to occur later in the course of the disease.
- There are no specific treatments for DLB. Treatment focuses on symptoms.
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Multidisciplinary Movement Disorders Clinic
Patients who come to the Movement Disorders Clinic are seen by a movement disorders specialist, a neurologist who has extra training in evaluating and treating a person with Parkinsons disease. There are no blood or imaging tests that can confirm Parkinsons disease, so diagnosis is based on visible signs and symptoms, which are reviewed during a medical history and neurologic examination.
Review Your Treatment Plan
Besides these basic questions, the most important way to choose the neurologist you will work with is by listening to the treatment plan she puts together for you. Does it make sense? Does your doctor discuss it with you after considering your personal needs, goals, and symptoms? Does she mention that the treatment plan needs to be flexible and be re-evaluated over time? Does she try to integrate the plan into your everyday life and needs?
You need to use your common sense when choosing a Parkinson’s disease neurologist/specialist. You cannot doctor yourself. You need to trust at some point that this highly trained specialist knows what he or she is doing.
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Parkinson’s Treatments We Offer
There is no cure for Parkinson’s, but treatment at Cedars-Sinai can loosen the grip that symptoms have on your life. Parkinson’s is a progressive illness, meaning your needs change over time. We are here for you with a broad range of options and personalized recommendations.
Therapies that are best for you depend on your symptoms and how long Parkinson’s has been part of your life.
Building On A Rich History
The Parkinson’s Disease and Movement Disorders Center is one of four entities comprising the Mass General Movement Disorders Unit. Our hospital has a long history of conducting research into Parkinson’s disease and caring for patients with this and other movement disorders. Robert Schwab, MD, laid the groundwork for the Movement Disorders Unit in the 1940s when he published his first research paper on Parkinson’s disease.
John Growdon, MD, serves as director of both the Parkinson’s Disease and Movement Disorders Center and the Movement Disorders Unit. His clinical interests include the cognitive and behavioral aspects of Parkinson’s disease and related disorders. Our staff includes over a dozen neurologists who specialize in the treatment of Parkinsons disease and movement disorders.
Mass General has earned the prestigious quality of Center of Excellence from the Parkinsons Foundation. In addition, our clinics physicians serve of advisory committees for the Parkinson Study Group and Michael J. Fox Foundation.
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Medication For Parkinsons Disease
Once the doctor diagnoses Parkinsons disease, the next decision is whether a patient should receive medication, which depends on the following:
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The degree of functional impairment
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The degree of cognitive impairment
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Ability to tolerate antiparkinsonian medication
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The advice of the attending doctor
No two patients react the same way to a given drug, therefore, it takes time and patience to find an appropriate medication and dosage to alleviate symptoms.
What Tests Diagnose Parkinson’s Disease
There currently are no tests that can definitively diagnose Parkinsons Disease. A diagnosis is based on the clinical findings of your physician in combination with your report on the symptoms you are experiencing.
In situations where an older person presents with the typical features of Parkinsons and they are responsive to dopamine replacement therapy, there is unlikely to be any benefit to further investigation or imaging.
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Further Testing In Parkinson’s
In other situations, where perhaps the diagnosis is not as clear, younger individuals are affected, or there are atypical symptoms such as tremor affecting both hands or perhaps no tremor at all, further testing may help. For example, imaging can play a role in differentiating between essential tremor and Parkinsons. It can also be important to confirm what is initially a clinical diagnosis of Parkinsons prior to an invasive treatment procedure such as surgical DBS
Research And Clinical Trials
UT Southwestern research programs are addressing clinical questions such as how best to treat PD and how to slow its progression. Among the most important of these investigations is a long-term National Institutes of Health -funded trial led by Richard Dewey, M.D., aiming to discover a biomarker for PD progression. Identifying a biomarker could accelerate the discovery of new therapies or perhaps even a cure.
Patients at UT Southwestern and their family members benefit from opportunities to participate in clinical trials. Clinical trials offer patients not only access to the latest advances in treatment and technology but also the opportunity to add to the knowledge about the disease and help improve treatment for others in the future.
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What Is Parkinson’s Disease
Parkinson’s disease is a condition characterized by degeneration of brain cells which leads to a deficiency of the neurotransmitter, dopamine. Dopamine is a substance used in the brain to carry impulses that allow one cell to communicate with another. When dopamine levels drop, motor skills, speech, and other functions are impaired.
Who We Are And What We Do:
Dr. Georgia Lea, Dr. Julia Staisch, and Dr. David Houghton are specialty-trained neurologists and Colleen Knoop is a specialty-trained Nurse Practitioner in the field of Movement Disorders. Dominique Thomas is the Movement Disorders and DBS Program Coordinator.
We see patients with Parkinson’s Disease, Essential Tremor, Dystonia, Restless Legs Syndrome, Huntingtons disease and Tourettes syndrome, to name a few. We are named a Huntingtons Disease Society of America Center of Excellence.
We also work in close collaboration with Neurosurgery, Neuropsychology and our allied health partners in several interdisciplinary clinics.
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Testing For Parkinsons Disease
There is no lab or imaging test that is recommended or definitive for Parkinsons disease. However, in 2011, the U.S. Food and Drug Administration approved an imaging scan called the DaTscan. This technique allows doctors to see detailed pictures of the brains dopamine system.
A DaTscan involves an injection of a small amount of a radioactive drug and a machine called a single-photon emission computed tomography scanner, similar to an MRI.
The drug binds to dopamine transmitters in the brain, showing where in the brain dopaminergic neurons are.
The results of a DaTscan cant show that you have Parkinsons, but they can help your doctor confirm a diagnosis or rule out a Parkinsons mimic.
My Top 6 Criteria For Choosing A Doctor
Finding the right doctor who meets your needs as a person with Parkinsons disease can be daunting. I have consulted with 11 neurologists, seven of whom were movement disorder specialists , in the five years since my initial diagnosis in 2015.
Following are my top criteria in choosing what I like to refer to as my partner on this Parkinsons journey:
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Expert Diagnosis At Advocate
Diagnosing Parkinsons in its early stages requires evaluation by experienced specialists equipped with the latest technology, as the diseases first signs can mimic other medical conditions or resemble the effects of aging. Our experts combine monitoring techniques with leading-edge tools to differentiate Parkinsons from other disorders and tremor-causing conditions. Early and accurate diagnosis allows our specialists to deliver prompt relief from whichever symptoms you are experiencing.
How Do You Find A Movement Disorder Specialist
An individual can seek a movement disorder specialist at any time during their PD battle. A movement disorder specialist does not exclusively work with those who are newly diagnosed or who are very far progressed. Parkinson’s Foundation developed a search tool that allows individuals to search for expert PD centers, which include movement disorder specialists, and community organizations within five to 250 miles away from their zip code or state.2
The tool can be found here: Parkinson’s Foundation In Your Area.
Additionally, the International Parkinson and Movement Disorder Society offers an international directory of movement disorder specialists, which can be found here: Movement Disorders Specialist Directory.
If you or a loved one is not interested in utilizing the online finder tool, a movement disorder specialist may also be recommended by another member of your healthcare team, specifically your primary care provider or neurologist. Movement disorder specialists may also be found within large teaching hospitals or associated with major universities. If these kinds of facilities exist in your area, they may be a helpful place to contact.1
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Risk Factors For Parkinson’s Disease
While a primary cause for PD is not yet known, certain risk factors can increase a persons likelihood of developing the disease:
- Age: PD is rare in young people. People who develop the disease are usually around 60 or older, and the risk increases with age.
- Exposure to environmental toxins: Exposure to certain herbicides and pesticides can increase risk.
- Gender: Men are more likely to develop PD than women. On average, three men will develop the disease for every two women.
- Heredity: Having a close relative with PD increases the chances of developing the disease. However, that risk is still small unless family members develop the disease at a young age.
Alternative Treatments For Parkinson’s Disease
Alternative therapy may also be used to treat Parkinson’s disease. The most touted in recent years has been the effect of Vitamin E on reversing the progression of the disease although, this effect is still being debated by the scientific community.
Relaxation and guided imagery have also been suggested to help with stress, depression, and anxiety. Medical studies have shown that relaxation and guided imagery may help slow the progression of symptoms as well as quicken healing time after surgeries or injuries.
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Support For People With Parkinson’s Disease
If a patient wishes, the Movement Disorders team maintains an ongoing relationship that includes follow-up appointments with physicians and advanced practice providers to monitor the condition as it progresses. Family members are included in discussions about the goals of a patients treatment and rehabilitation program. Caregivers have access to services such as psychological counseling, support groups, and educational programs.
UT Southwestern also hosts an annual Parkinsons Disease Patient and Caregiver Symposium for patients, their families, their caregivers, and anyone interested in learning more about the disease. The symposium reviews the latest clinical treatments, ongoing research projects, new drugs, and leading-edge developments that are on the horizon.
What Tests Might I Have
Your doctor may want to start by testing your blood or doing a brain scan to rule out other conditions.
People who have Parkinsonâs disease donât make enough of a brain chemical called dopamine, which helps you move. If those first tests donât show a reason for your symptoms, your doctor may ask you to try a medication called carbidopa-levodopa, which your brain can turn into dopamine. If your symptoms get much better after you start the drug, your doctor probably will tell you that you have Parkinsonâs disease.
If the medication doesnât work for you and thereâs no other explanation for your issues, your doctor might suggest an imaging test called a DaTscan. This uses a small amount of a radioactive drug and a special scanner, called a single photon emission computed tomography scanner, to see how much dopamine is in your brain. This test can’t tell you for sure that you have Parkinson’s disease, but it can give your doctor more information to work with.
It can take a long time for some people to get a diagnosis. You may need to see your neurologist regularly so they can keep an eye on your symptoms and eventually figure out whatâs behind them.
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Find A Parkinsons Expert
Finding a doctor who is an expert in Parkinsons disease can help you get the best possible care. Look for a neurologist, a doctor who works with brain and central nervous system conditions such as Parkinsons. When possible, a movement disorder specialist a neurologist with additional training to treat people with Parkinsons at every stage of the disease can be a key addition to a quality care team.
Neurologists with Parkinsons expertise and movement disorder specialists can often recommend other healthcare professionals who can help treat day-to-day challenges. A holistic, team-based care approach can help you live well with PD.
Members Of The Healthcare Team
Who should make up your care team? At a minimum you will need:
- A primary care physician who looks after your day-to-day medical needs. This may be someone who you have seen for many years and knows you well, or you may need to find a primary care physician.
- A neurologist who specializes in movement disorders. This is most important as a neurologist in movement disorders will likely be able to help you find others who are experienced in Parkinson’s disease to fill out your healthcare team.
- A counselor or psychiatrist or psychologist who can help you manage potential emotional and mental health problems is they arise
- Allied health professionals like physical therapists, occupational therapists, sleep medicine specialists and so forth. Your neurologist should be able to help you find the allied health professionals right for you.
- Yourself – Part of being an empowered patient is playing an active role in your care.
- Your partner – Parkinson’s disease can have a tremendous impact on relationships, and including your partner or other family members can be very helpful in managing the disease.
All of these people will, of course, need to communicate with one another, but the key figure for management of your Parkinson’s symptoms will be your neurologist. So how do you find a neurologist who is right for you?
Don’t overlook your own role as a very important member of your healthcare team, as well as that of your family.
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What To Expect From The Doctor
At your first visit, a PD specialist will take a thorough medical history and also ask about your family medical history and symptoms. He or she will conduct a physical examination and a neurological exam. The doctor will ask you to sit, stand and walk to observe your balance and coordination. The doctor may also order a brain imaging test to rule out other conditions.
What To Look For In A Parkinsons Disease Neurologist
Here is a checklist of basic questions for your prospective neurologist:
- How long have you worked in the field? How many Parkinson’s patients do you see a year?
- Do you have special training in movement disorders? Are you board-certified in neurology?
- Who do I see when you are not available?
- What hospital do you use for treating patients?
It’s important to understand that the online rating systems for doctors are not very accurate. Or they are, in some ways, and it is not the information you are looking for. For example, many of these ratings rank a doctor high if he is always on time and never backed up. If you think about the clinic setting and the inability to really control what happens in a typical day, and the doctor who is always time may be the doctor who never has that extra minute to give you when you need it. These ratings also often include how easy it is to get an appointment.
Of course, the doctor who is exceptional that everyone wants to see ranks poor on this measure, and the doctor who doesn’t have a strong following ranks high. If you do look at these rankings, make sure to read the comments, and realize that one bad comment could simply represent one patient having a bad day after being given a diagnosis he didn’t want.
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