10 Things to Know When Diagnosed with Parkinson’s

Facing a Parkinson's diagnosis? Don't worry. Each experience is unique. Here's what you should know.

Liz Ferluga MD

April 1, 2024](/content/author/liz-ferluga-md/index.html)

Being diagnosed with Parkinson’s Disease can be an overwhelming and isolating experience. The journey ahead may seem daunting. At Synapticure, we're here to guide you through it. We understand the uncertainty and fear that often accompany a new diagnosis, which is why we're dedicated to providing personalized care and support every step of the way.

In this article, we've compiled a list of essential things to know when facing a Parkinson’s diagnosis. From understanding the condition to navigating the healthcare system, we're committed to empowering you with knowledge and resources tailored to your unique journey. If you're ready to learn more, don't hesitate to reach out to us at (855) 255-5917. Your journey with Parkinson's doesn't have to be faced alone—let us be your care partners.

You are not alone

Parkinson's disease (PD) is the second most common age-related neurodegenerative disease in North America. More than 10 million people are living with PD in the world. A study published in 2022, “Incidence of Parkinson's disease in North America”, found 90,000 new diagnoses of PD each year. The incidence of PD is higher in males and increases with age once over 65.

Parkinson’s disease is different for everyone

PD is unique to the individual. Some patients have tremors. Others have more issues with walking. Some patients struggle with nonmotor symptoms more than their motor symptoms. Symptoms vary daily. If you are sick, stressed, or fatigued, you will have more symptoms. It’s important to practice self-compassion and avoid comparison as each person has a different journey. If you work with Synapticure, we will provide each person with an individualized care plan tailored to their symptoms and needs. If you already have a doctor, we will work in partnership with them to ensure you are covered at every angle.

You may have had symptoms of PD years to decades before the diagnosis

Specific symptoms can precede the PD diagnosis years to decades before diagnosis, including constipation, decreased sense of smell, acting out dreams during sleep, depression, anxiety, and cognitive changes. Remember, it's common for Parkinson's symptoms to manifest subtly and progress gradually over time, often going unnoticed until diagnosis. So, if you didn't recognize these signs earlier, know that you're not alone, and it's never too late to seek support and take steps toward managing your health.

PD affects other systems in your body

Your fight or flight system, known as the autonomic nervous system, is affected by Parkinson’s disease. The main symptom is often constipation, but it can also manifest in difficulty with sexual function, bladder control, and blood pressure fluctuations. If you’ve noticed changes in your symptoms, contact your health professional for timely interventions and improved management of your symptoms.

It’s important to add a specialist to your team like a Movement Disorder Specialist. They are expertly trained to provide diagnosis, treatment optimization, non-motor symptom recognition, advanced treatment guidance, and familiarity with recent research developments. Having a Movement Disorders specialist on your team has been shown to result in better care, and earlier and proactive treatment and planning in response to disease symptoms.

Mood disorders are common in Parkinson’s disease

In Parkinson’s, nonmotor symptoms exist as a result of complications from the disease. Nonmotor symptoms arise from a lack of dopamine and the impact on other neurotransmitters like Serotonin and Norepinephrine, leading to fatigue, apathy, depression, and anxiety. Approximately 40% of PD patients have apathy. Anxiety may be present in up to 40% of people with PD. It is recommended to discuss these issues with your healthcare team, as treatment with counseling and medication can help.

At Synapticure, we understand the intricate relationship between Parkinson’s disease and mood disorders, which is why we have a dedicated team of mental health professionals with decades of experience in managing neurodegenerative conditions. They can provide tailored support and interventions to help you navigate any challenges you may encounter.

Hallucinations and delusions can develop

Hallucinations and delusions in Parkinson’s disease are also known as PD psychosis. This can occur in 20% of patients without cognitive impairment, with higher rates in patients with PD-associated dementia. Other risk factors for psychosis include mood disorders, poor sleep, and impaired vision. The most common symptoms are visual hallucinations, usually manifesting as people or animals, and it is important to inform your care team if this occurs as many PD medications can worsen these symptoms.

Speech and swallow changes are common

Many patients with Parkinson’s disease start having difficulty with a soft voice early in the disease. Some may trip over their words, causing a stutter-like effect. As the disease progresses, patients may develop difficulty with swallowing food, water, and medications. This can put one at risk of choking, aspiration, and pneumonia. Early recognition is key; swallow therapy and LOUD (Lee Silverman Voice Therapy) can help strengthen those muscles and improve function. Synapticure can connect you to speech language therapists. If you're not ready for speech therapy, singing can help strengthen your voice. There are virtual sing-alongs available to join!

Certain medications can worsen Parkinson’s disease

Many medications can lower dopamine further, worsening symptoms of Parkinson’s disease. Anti-nausea medications like Phenergan (promethazine), Compazine (Prochlorperazine), and Reglan (metoclopramide) work by blocking dopamine. Some mental health medications, including antipsychotics used to help manage mood and hallucinations, also block dopamine. The American Parkinson’s Disease Association has a helpful list of medications to avoid based on your Parkinson’s disease symptoms.

Exercise helps delay progression

While there is no cure for Parkinson’s disease, exercise is known to help delay progression. Current recommendations include 150 minutes of moderate to intense exercise per week. This can encompass strength training, stretching, and balancing exercises. It's important to exercise safely; consider a physical therapist specializing in Parkinson's disease and practice exercise when you are “on” your medications to mitigate balance issues and avoid falls.

It is important to build your support network

Work on building your care team with additional providers like a movement disorder neurologist, counselor, and physical/occupational/speech therapists. Consider joining an exercise class, sing-along, or support group virtually or in-person. Do not hesitate to seek assistance; there are valuable resources available for patients and caregivers through organizations like the Michael J. Fox Foundation, Parkinson’s Foundation, American Parkinson’s Disease Association, PD Avengers, Davis Phinney Foundation, and more.

About the Author Dr. Ferluga , a neurology specialist, developed and directed movement disorder programs at prestigious medical centers before pivoting to teleneurology with Synapticure, focusing on holistic care for Parkinson’s and Huntington’s patients.

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