Ask an Expert: Dr. Omesh Kulkarni Discusses how People with Parkinson’s can Make the Most of their Neurology Appointments

Dr. Omesh Kulkarni, MD, is a neurologist specializing in Parkinson’s disease (PD), serving mid to north Vancouver Island. After completing medical school in India, he trained as a neurologist in England, followed by a year as a fellow at the Parkinson's Disease and Movement Disorders Center at the Beth Israel Deaconess Medical Center in Boston, Massachusetts. After his fellowship, he started a Parkinson’s and Movement Disorders clinic in England, which ran from 2013 to 2021. Presently, Dr. Kulkarni works between two sites in Nanaimo – the Parkinson’s and Movement Disorders Clinic at Nanaimo Regional General Hospital, and a private clinic.

How does a person with Parkinson’s disease access a neurologist’s services in BC?

Family physicians play a vital role in the delivery of healthcare. By and large, they are the first port of call for all medical concerns. Family physicians are well-placed to decide when and where to refer. They usually have a good idea of local specialists and their sub-specialty interests. The best way for patients with suspected or confirmed Parkinson’s disease to access a neurologist is to liaise with their family doctor and seek a referral.

People with Parkinson’s may sometimes relocate to be closer to their loved ones. This creates the added stress of finding a neurologist with a Parkinson’s disease specialty in their new community. In most cases, this can be mitigated by asking their existing neurologist to refer them to the nearest Parkinson’s clinic. Vancouver Island now has two Parkinson’s clinics – one in Nanaimo, and the other in Victoria.

What can people with PD expect at their first neurologist appointment?

To begin, patients can expect their neurologists to ask about their current troublesome symptoms. Previous health issues, as well as any current medications and those previously tried, will also likely be reviewed. This is then followed by a focused examination. Your neurologist is trying to put together everything, like a jigsaw puzzle, to arrive at a diagnosis. The second half of the consultation is mainly devoted to discussing the diagnosis, counselling, and chalking out a plan of action, which, in the majority of people, is commencing dopaminergic medications to try to alleviate symptoms.

You can expect to be given verbal information, as well as printed materials, to empower you and help with future decisions. I recommend patients take home as much written information as possible. The first appointment can be overwhelming and patients may not remember everything discussed. Where available, you may also be introduced to the clinic’s Parkinson’s nurses and other team members.

How often should a person with PD see their neurologist?

In some ways, this is dictated by the stage of Parkinson’s. People in the early stages of PD are less likely to need frequent medication changes. Whilst there are no strict guidelines, I believe follow-up every six to 12 months should be sufficient in the early stages. As Parkinson’s progresses, patients require more frequent fine-tuning of medications, which then warrants more frequent follow-up.

What information should a patient come prepared with to a neurology appointment?

Preparation depends on whether the appointment is a first visit or a follow-up. During the initial appointment, your neurologist will want to know if you have a family history of medical and/or neurological problems, so check with your family members prior to the appointment. Where possible, bring your loved one who knows you and your health issues well.

It is also important for patients to plan ahead and keep a running list of questions and concerns, which may help them feel better prepared. Remember that only you know your symptoms and concerns. Be prepared to provide your neurologist with information on your current problems and any background health issues. Ensure you also bring an up-to-date list of medications you are taking and their dosages. Please note, some clinicians work at more than one clinic. Make sure you have the correct address and leave plenty of time for parking.

When should a person with PD contact their primary care physician versus their neurologist?

Family physicians have a fair idea of Parkinson’s disease. They can address common issues, so contact your family physician first. If your family physician cannot address a particular problem, they will contact the neurologist to seek further advice. However, if your questions are related to advanced therapies like Deep Brain Stimulation (DBS) or Duodopa, or if you are running into troublesome motor fluctuations in the form of medications not lasting long enough or not kicking in on time, you may wish to get in touch with your neurologist first. Again, there are no strict rules regarding this. It is worth noting that you are likely to see your family physician quicker than your neurologist.

How can people with PD get the most out of their neurologist appointments?

Before the appointment, where possible, sit down with your loved ones and write down a list of questions, concerns, and troublesome symptoms. Make sure you have an up-to-date list of medications you are taking. It is a good idea to keep track of when medications wear off prematurely or take too long to start working, as well as any dyskinesias. It is also worth spending time reading about Parkinson’s, which can help you understand which symptoms are and are not Parkinson’s-related. This will help you and your neurologist spend the maximum amount of time discussing the appropriate issues.

Arrive a few minutes early for your appointment. This gives you enough time to fill out intake forms for the clinic and collect your thoughts ahead of the appointment. If it is a follow-up, update your neurologist about any new developments in your health or new medications since the last appointment. Go through your list of concerns and have them addressed. However trivial they might sound, if you are concerned, bring it to the attention of your neurologist.

Please make sure you tell your neurologist if you take any over-the-counter and/or herbal medications. Ask about the intended benefits and side effects of any prescribed medications, as well as how to address side effects, should they occur. You can also ask for medication refills. Be sure you have understood the treatment plan before you leave. If unsure, ask for clarification. Finally, obtain your neurologist’s office contact information for any future inquiries.

How can caregivers/carepartners support people with PD before and during their neurology appointments?

Caregivers play a vital role in the care of people with PD. It is worth noting that Parkinson’s disease is a dynamic condition and the care, support, and involvement of caregivers is subject to change with time. They can help as much or as little as needed. Since most caregivers are spouses and family members, they tend to have a good idea about a patient’s abilities and care needs.

At home, caregivers can be a source of company, engaging patients in conversations. Where needed, they can help with activities of daily living. They may also help take the person with PD to social gatherings, support groups, and medical appointments. In addition to keeping a schedule for the timely intake of medications, caregivers can help document responses and side effects.

During neurology appointments, caregivers can help patients convey their concerns if there are difficulties with speaking. They can also take notes and tell the neurologist about any benefits and side effects of medications.

What symptoms or changes warrant immediate attention from one’s neurologist?

Parkinson’s disease is a condition that progresses slowly. The majority of patients are unlikely to have Parkinson’s-related emergencies that would require urgent attention. But please remember, if you cannot cope, your symptoms are severe and intolerable, and you feel seriously unwell, call 911 and seek urgent help whilst waiting for your neurologist to get back to you.

Severe swallowing issues that prevent you from taking medications need urgent attention. In this case, medications may need to be delivered via another route, like a nasogastric tube.

Repeated doses of Levodopa failing to produce a clear benefit, coupled with worsening stiffness, slowness, and tremor also need urgent evaluation to uncover the underlying cause (such as severe constipation, pain, a change in diet, etc.).

Sudden dramatic worsening of PD symptoms in someone on an advanced therapy, like DBS or Duodopa, requires immediate attention, as this could be a failure of the DBS circuit or displacement of the Duodopa tube.

Emergencies in PD that require hospitalization can be divided into motor and non-motor categories:

Motor emergencies:

• Recurrent ‘off’ periods: severe tremor, pain, profuse sweating, and/or tachycardia
• Parkinsonism-Hyperpyrexia syndrome: when dopaminergic medications do not produce the desired benefit, combined with high fever, feeling unwell, and unusual excessive stiffness and/or slowness
• Dyskinesia-Hyperpyrexia syndrome: severe uncontrollable persistent dyskinesias, or what looks like a dyskinetic storm

Non-motor complications:

• Acute psychosis: paranoia, agitation, severe confusion, and/or hallucinations
• Impulse control disorders: abnormal behaviors like gambling, excessive shopping, and/or hypersexuality

How can people with PD get the most out of their neurologist appointments?

I’d start with the million-dollar question: when is the cure coming out? Following that, I would be interested in my neurologist’s thoughts on these issues:

• Do I need medication (upon diagnosis)?
• What is the rate of progress I can expect?
• Is there anything I can do to slow down the progression?
• What is the role of exercise in treating PD?
• Am I being optimally treated, or can something in my care plan be modified?
• Is there anything I could be doing to improve my symptoms?
• What can I expect with medications?
• What are the side effects of medications?
• Can I continue to drive?
• Am I eligible for advanced therapies?
• What are the pros and cons of taking part in research trials?

This content was published in the Summer 2022 edition of our quarterly magazine, Viewpoints. The content was accurate as of this publication date.