By: Dr. Vikki Alvarez
Neurologist, Movement Disorders Specialist
If you or your family member suffer from Parkinson’s Disease (PD), you probably realize by now that having the right doctor is extremely important. While most Neurologists can manage PD, it is crucial to have a “right fit” doctor-patient relationship. PD is a neurodegenerative condition; there is currently no cure available. You will be required to see your neurologist frequently to ensure the best outcome; therefore, finding the right doctor can dramatically improve your symptoms management.
In this quarterly newsletter I would like to share some tips to help you in your search to find the right doctor and how you can maximize the office visit by being a well prepared patient.
So, let us start by finding the right type of doctor. to see.
Should you see a General Neurologist? Should you see a Movement Disorder Specialist (MDS)? What is a MDS and why should you see one?
Generally, most Neurologists have some training in PD management, so you can see a General Neurologist for PD management.
However, many Neurologists opt for additional educational training beyond their required residency or fellowship. A Movement Disorder Specialist is a Neurologist who has received fellowship training specifically in the treatment of movement disorders such as PD. In my opinion, these are the most qualified doctors to treat Parkinson’s Disease because of their in-depth knowledge of the disease, its symptoms, treatment, and current research (including clinical trials). However, there are also a nonfellowship trained Neurologists who show interest in the management of PD. These physicians usually have research experience, or choose to focus their clinical experience around movement disorders despite not having specific fellowship training.
So you found a MDS; are they are they the “right” doctor for you?
Patients should always feel comfortable with the ‘doctor-patient’ relationship. To be optimal such a relationship needs is to always be a two-way relationship with open communication between both sides. It should, therefore, feel like a good “match.” If there are any doubts after the first few appointments, perhaps it is the right time to seek for a second opinion. For me, seeking a second opinion is never wrong. If there are ever any questions regarding clarification of the diagnosis or for specific management options, I always encourage my patient to seek another medical opinion. This helps to ensure the relationship between doctor and patient is an ideal match for future work together.
Managing PD is not always about simply the defining the diagnosis;, it is a long term relationship requiring trust and respect for each other. It has to be attained on day one of your visit with your Neurologist.
Below are some suggestions from the Parkinson’s Disease Foundation regarding doctor-patient relationships::
Is your doctor right for you? Consider these questions:
Are you comfortable speaking with your doctor?
Do you feel respected by your doctor?
Are questions answered to your satisfaction or do you come away from a visit feeling that you have not been taken seriously?
Can you get in touch with the doctor between visits?
Ask your doctor, “How long should I expect to wait for a return phone call?”
Does your doctor have a backup doctor in lieu of his/her absence?
You may even decide to interview a Neurologist before you make a definite selection. Ask questions such as, “What happens if I have new symptoms, or if questions arise between visits?”
So, it is time for your appointment; how can you maximize your visit?
I typically advise my patients to see me every three months, although in rapidly advancing disorders, or in individuals experiencing problems with their treatments, I may ask them to see me more frequently. Follow up visits can be overwhelming for some patients. Most patients forget the most important thing until they are back in their car. To make the most of the visit, here are some tips which I find helpful:
Write down your questions and concerns.
Write the names of PD medicine, dose, timing, etc. Don’t bring your pills without their designated bottles. Trust me, doctors can’t tell the names of the drugs simply by their colors or shapes.
Be a good historian! You have to be able to tell your doctors things that we can’t observe in the office. For example: side effects of medications, how long do your medications work? Do you have in-between fluctuations? etc.
Have realistic expectations! Know that most PD patients have more than two issues at any one point in time. If you have several concerns during your appointment (memory loss, depression, loss of appetite, constipation, incontinence, insomnia, fatigue, weakness, drooling, etc.), be aware that you are unlikely to have a solution for all of them at one visit. It may be best to pick your two most concerning issues to be discussed at a specific visit. Remember, you can always come back for future follow up.
What causes apathy in Parkinson’s?
The exact cause of apathy in Parkinson’s is unclear but it is thought to be due to the chemical changes that occur in the Basal ganglia, the area of the brain associated with a variety of functions including emotion and Motor control.
Living with Parkinson’s may also make social contact more difficult because of reduced mobility and the ways in which communication can be affected; these factors may exacerbate any burgeoning feelings of apathy.
For a long time it was generally considered that apathy and Depression go hand in hand, but a study in 2006 revealed that people with Parkinson’s do not have to have depression in order to experience apathy. The study1 compared 80 people with Parkinson’s with 20 others with non-Parkinson’s Dystonia, and found a significantly higher severity and frequency of apathy in those with Parkinson’s. 51% of participants with Parkinson’s scored positive for apathy on the Marin Apathy Evaluation Scale2, compared with 20% of those with dystonia. Results also showed that although the rates of Depression were the same for both groups, 28.8% of Parkinson’s participants experienced apathy with no depression compared with none of those with dystonia.
These results highlight the importance of screening for both apathy and depression to ensure correct diagnosis, and to avoid prescribing treatment for depression when it is not present.
Diagnosis can be tricky in those with Parkinson’s, particularly as those people with feelings of apathy tend not to complain – by definition, they do not care about their disinterest and tend to do little to address the situation. As a result, it is often family and carers who act and seek help.
Apathy is usually diagnosed by asking about mood, motivation and other indications, and there are several recognised ‘evaluation scales’ – the Marin Apathy Evaluation Scale (as mentioned above), Beck Depression Inventory3, and Centres for Epidemiologic Studies-Depression Scale, for example. These involve asking various questions designed to determine whether you are self-motivated or need to be told what to do, and whether you like to see tasks through or not. Responses are measured using a points system to see if apathy is present is not.
1. Disassociating Apathy and Depression in Parkinson’s Disease – Neurology 2006 3;67:33-38
2. Marin Apathy Evaluation Scale
3. Beck, AT, CH Ward, M Mendelson, J Mock, and J Erbaugh. 1961. An inventory for measuring depression. Arch Gen Psychiatry 4: 561-571.