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Check-in and vendor visits start at 4 p.m. and the program starts at 4:45 p.m.
Navigating Parkinson’s disease involves looking ahead, learning and adjusting as symptoms and needs change. This program addresses some of the challenges of advancing PD and explores strategies to prepare for the future, including how to evolve your care plans and treatments throughout progression, and understanding the importance of financial and legal planning, so you can live your best life with PD now.
Speakers
Elizabeth Zauber, MD
IU Health, A Parkinson's Foundation Center of Excellence
Justin Schuhmacher, Attorney at Law
Indiana Estate and Elder Law
There is no charge to attend, but pre-registration is required. This program is open to people with Parkinson's, their family, friends and the community.
This program highlights the importance of identifying your care team early, engaging with them regularly, and understanding how each professional contributes essential insights, resources, and strategies for maintaining a sense of control, independence, identity and lifestyle.
Through guided breathwork and visualization, you will be encouraged to step into the present by releasing thoughtful roadblocks and opening your mind to new opportunities and experiences that can assist in managing Parkinson’s disease.
Parkinson's Foundation and Northwestern Medicine Parkinson's Disease and Movement Disorders Center present: Parkinson's Disease Patient and Family Symposium.
This program will feature experts discussing: Tips from a Movement Disorder Specialist, Advances in Parkinson’s Research, and the Benefits of the Creative Arts for PD. Q&A with the experts, will follow each presentation.
Speakers
Tanya Simuni, MD, FAAN
Northwestern Medicine
Danny Bega, MD, MSCI
Northwestern Medicine
Paulina Latapi, MD, MSc
Northwestern Medicine
Carly Liegel
The Joffrey Ballet
Linda Jedrzejek, MT, BC
Neurologic Music Therapist
Lisa Bany
The Second City
Annie Arnold, MA, ATR-BC, LCPC, CATAP
Institute for Therapy through the Arts
This program is open to people with Parkinson's, their family, friends and the community. There is no charge to attend, but registration is required.
10 a.m. Welcome / Opening Remarks Danny Bega, MD, MSCI, Northwestern Medicine Jessica Bartsch, MS, NCC, Parkinson's Foundation
10:15 a.m. Key Note: Top Tips from a Movement Disorders Specialist Paulina Latapi, MD, MSc, Northwestern Medicine (Q&A to follow presentation)
11:05 a.m. Therapeutic Pipeline and Research Update Tanya Simuni, MD, FAAN, Northwestern Medicine (Q&A to follow presentation)
12:05 a.m. Break
12:10 p.m. Be Creative: The Benefit of Visual Art, Music, Dance, and Improv for Parkinson's Disease Danny Bega, MD, MSCI, Northwestern Medicine Carly Liegel, The Joffrey Ballet Linda Jedrzejek, MT-BC, Neurologic Music Therapist Lisa Bany, The Second City Annie Arnold, MA, ATR-BC, LCPC, CATAP, Institute for Therapy through the Arts (Q&A to follow presentation)
Northwestern Medicine Parkinson's Disease and Movement Disorders Center provides innovative, multidisciplinary care for patients and families affected by Parkinson's disease and other movement disorders. The Center's care team works to promote health, education and support for patients. It also supports caregivers, family members, healthcare providers and the community. We continually strive to meet the needs of the Parkinson's community in a variety of ways. In doing this, we have adapted our annual symposium to a virtual setting for the safety and accessibility of the larger Parkinson's community.
This is a virtual program, taking place live, using the online Zoom platform. Instructions on joining the webinar are provided after registering.
This program highlights the importance of identifying your care team early, engaging with them regularly, and understanding how each professional contributes essential insights, resources, and strategies for maintaining a sense of control, independence, identity and lifestyle.
Through guided breathwork and visualization, you will be encouraged to step into the present by releasing thoughtful roadblocks and opening your mind to new opportunities and experiences that can assist in managing Parkinson’s disease.
There are many daily challenges associated with Parkinson’s disease that may lead to social discomfort and ultimately isolation. This webinar will focus on a few that may be less talked about including drooling, urinary incontinence, dyskinesia and even eating in public. We will discuss how each impacts the person with Parkinson’s and address ways to speak to family and friends about how these visible symptoms cause self-consciousness in social situations.
Speaker
Taylor Rush, PhD - Health Psychologist
Director of Behavioral Services and Interdisciplinary Programs
Center for Neurological Restoration
Cleveland Clinic, A Parkinson's Foundation Center of Excellence
There is no charge to attend, but registration is required.
This program highlights the importance of identifying your care team early, engaging with them regularly, and understanding how each professional contributes essential insights, resources, and strategies for maintaining a sense of control, independence, identity and lifestyle.
Through guided breathwork and visualization, you will be encouraged to step into the present by releasing thoughtful roadblocks and opening your mind to new opportunities and experiences that can assist in managing Parkinson’s disease.
4 Ways People with Parkinson’s Can Avoid Common Hospital Complications
For most people, being in the hospital is a stressful experience. People are usually sick or experiencing a health issue. For people with Parkinson’s disease (PD), their symptoms may get worse, and new symptoms, like confusion or thinking changes, can develop because of stress, infection, fatigue, sleep disturbances, surgery or new medications.
A new published review of more than 35,000 hospital admissions of people with Parkinson’s found an increased risk of delirium and aspiration pneumonia as potentially avoidable complications.
As we share in our Hospital Safety Guide, preparation and clear communication can help you minimize complications and recovery time when hospitalized. Understanding the risks you or a loved one with Parkinson’s face and ways to have your needs met can help the hospital care team provide the best possible care.
Know how to identify Delirium
Delirium is a reversible change in a person's level of attention and concentration.
Anti-nausea, gastrointestinal and pain medications, which are routinely given before and after surgery, can worsen existing PD symptoms or cause new, temporary symptoms like delirium. Avoiding these medications can decrease your risk of developing delirium.
Additionally, some common treatments for delirium aren’t appropriate for people with PD, and can make Parkinson’s symptoms and the delirium worse. If you or a loved one develop delirium in the hospital, it is important to avoid the antipsychotic medications that are antidopaminergic, meaning they decrease the amount of dopamine in the brain.
People with Parkinson’s should only be given one of the three antipsychotics that are safe:
Pimavanserin (Nuplazid)
Quetiapine (Seroquel)
Clozapine (Clozaril).
All psychotics, with the exception of these three, should be avoided in nearly all circumstances.
Aspiration pneumonia accounts for 70% of deaths among people with PD, according to an NIH study.
Aspiration pneumonia is an infection that happens when bacteria from your mouth gets pulled down into the lungs and causes an infection. This can happen after a person aspirates, meaning they swallow the wrong way, and something enters their airways or lungs. Aspiration occurs more frequently when someone has issues with swallowing (dysphagia), which is a common Parkinson’s symptom.
To prevent aspiration and aspiration pneumonia, people with Parkinson’s need to be screened for swallowing changes, also known as dysphagia, to safely maintain their medication routine and minimize their risk of aspiration pneumonia and weight loss.
In addition, ensuring that you or your loved one with Parkinson’s get their Parkinson’s medications on time and avoid contraindicated medications that are not safe for people with Parkinson’s can also help prevent the development of new dysphagia or the worsening of mild dysphagia.
Tips to avoid delirium and aspiration pneumonia in the hospital
Tip 1. Avoid medications that are not safe for Parkinson’s.
This can potentially help you to:
Prevent delirium caused by taking contraindicated anti-nausea medications
Prevent worsening of delirium caused by taking contraindicated antipsychotic medications
Review the list of harmful medications on the Parkinson’s Care Summary with your hospital care team before surgery and before any new medication is prescribed.
Tip 2. Take medications on time, every time to help prevent new or worsening swallowing challenges.
If your nurse or speech-language pathologist is concerned about your swallowing ability, discuss safe ways to continue taking your medications, such as with a sip of water or crushed with applesauce.
Use the Medication Form to list all your medications for Parkinson’s and other conditions, including over-the counter medications and supplements in the order that you take them each day. Your list should be clearly labeled with the dosage (usually mg or milligrams) and the specific time that you take each medication.
Tip 3. Tell your nurses if you are having trouble swallowing and ask to see the Speech Language Pathologist (SLP).
Together, your nurse and SLP can provide safety measures to decrease risks.
You may need to temporarily stop eating and drinking if you have a serious swallowing issue (dysphagia) or are scheduled for a medical procedure that requires fasting. If you or your loved one are instructed you cannot swallow pills, show the nurse and SLP “Other Ways to Take your Medication” to explore potential ways to safely continue taking Parkinson’s medications
If you have swallowing or speech symptoms, we recommend you regularly see a speech language pathologist. Once discharged, ask your doctor for a referral, or call our Helpline at 1-800-4PD-INFO (1-800-473-4636).
Tip 4. Reducing the risk of aspiration pneumonia is a two-part process.
Help reduce aspiration pneumonia when hospitalized and at home that involves (1) preventing swallowing issues and (2) reducing bacteria in your mouth by cleaning your teeth and mouth regularly. Learn more about dental health and Parkinson’s.
Prevent aspiration by eating when PD meds are working and you have energy. It can also help to sit up for meals and take smaller bites. Prevent aspiration pneumonia by brushing your teeth, tongue and mouth before and after eating to reduce bacteria.
Read more about the steps you can take to avoid delirium, aspiration pneumonia, and other avoidable complications in our Hospital Safety Guide.
Help Spread the Word
Share this graphic on Facebook to help your friends and family with Parkinson's stay safe in the hospital.
Get out and move with your community! Every dollar raised supports the Parkinson’s Foundation mission to make life better for people affected by Parkinson’s disease (PD). At Moving Day Community Walks across the country, we’re fighting Parkinson’s and celebrating movement — proven to help manage Parkinson’s symptoms — and we’re doing it together. The Moving Day Community Walk Program is a complement to the Parkinson’s Foundation Moving Day, A Walk for Parkinson’s. These walks are family-friendly and help the Foundation make life better for people with PD.
The Community Walk program offers volunteers an opportunity to organize a walk in their own community that does not have a Moving Day event. The program leverages the personal experiences and community leadership of passionate volunteers to promote Parkinson’s awareness and raise funds for the Parkinson’s Foundation.
This program highlights the importance of identifying your care team early, engaging with them regularly, and understanding how each professional contributes essential insights, resources, and strategies for maintaining a sense of control, independence, identity and lifestyle.
Through guided breathwork and visualization, you will be encouraged to step into the present by releasing thoughtful roadblocks and opening your mind to new opportunities and experiences that can assist in managing Parkinson’s disease.
Deep Dive Conversations About 5 Common Non-Movement Parkinson’s Symptoms
When it comes to Parkinson’s disease (PD), non-movement symptoms are often overlooked because they are not as visible as those of their movement counterparts. However, these symptoms can be just as challenging to everyday life. Learning the common signs can help you recognize and manage symptoms.
Explore our podcast episodes where we dive into non-movement symptoms. Each episode highlighted below strives to deepen your understanding of these symptoms, as well as offer strategies for managing them.
Apathy, a lack of interest or motivation, can be an issue for people with Parkinson’s and may interfere with daily activities, social interactions and overall well-being. Movement Disorders Neurologist, Nabila Dahodwala, MD, MS, Director at the University of Pennsylvania, a Parkinson’s Foundation Center of Excellence, explains the impact of apathy on daily life and shares strategies to help address it and find the motivation to exercise.
Depression is often overlooked and undertreated, despite it being a common symptom of Parkinson’s. Veronica Bruno, MD, MPH, a neurologist specializing in movement disorders at the University of Calgary, a Parkinson’s Foundation Center of Excellence, discusses the importance of recognizing and treating depression.
Low blood pressure, also known as hypotension, can be dangerous if not treated. It may cause dizziness, fainting and falls, which can lead to fractures. Jeni Bednarek, RN, BSN, ACRP-CP, the team coordinator at Oregon Health and Science University, a Parkinson’s Foundation Center of Excellence, talks about how people with Parkinson’s can manage low blood pressure.
Nausea, or the feeling of discomfort in the stomach, can sometimes be caused by Parkinson’s, or as a side effect of medications. Andrew Feigin, MD, Professor of Neurology and Director of the Fresco Institute for Parkinson’s and Movement Disorders at New York University Langone Medical Center, a Parkinson’s Foundation Center of Excellence, discusses the causes of nausea, both from PD itself and from medication, and what people can do to help lessen or prevent it.
Difficulty sleeping can impact your overall health and well-being. Dr. Aleksandar Videnovic of Harvard Medical School and Director of the Division of Sleep Medicine at Massachusetts General Hospital, a Parkinson’s Foundation Center of Excellence, discusses the causes of sleep problems, including insomnia, REM sleep behavior disorder and daytime sleepiness.
Subscribe to our podcast. Search for “Substantial Matters: Life and Science of Parkinson’s” on your favorite podcast platform.
The Moving Day Atlanta Corporate Kickoff Breakfast is an opportunity for business and community leaders to come together in support of the Parkinson’s Foundation’s mission to make life better for people living with Parkinson’s disease (PD).
Enjoy a complimentary breakfast while hearing powerful stories from our Parkinson’s community and learning how your organization can get involved with Moving Day Atlanta—the Parkinson’s Foundation’s signature fundraising walk.
Whether you are a long-time supporter or exploring partnership for the first time, this event offers meaningful ways to engage your business, build community impact, and support the Foundation’s vital work to improve care and advance research toward a cure.
Because awareness is moving. Community is moving. Georgia is moving.
There is no charge to attend, but registration is required.
This program highlights the importance of identifying your care team early, engaging with them regularly, and understanding how each professional contributes essential insights, resources, and strategies for maintaining a sense of control, independence, identity and lifestyle.
Through guided breathwork and visualization, you will be encouraged to step into the present by releasing thoughtful roadblocks and opening your mind to new opportunities and experiences that can assist in managing Parkinson’s disease.
Dr. Michael Okun 00:00:16
When you take your Parkinson's disease medications, you can get periods where you're on and you're feeling quite good. But when you're off, you may be stiff and rigid and, in some cases, tremulous and may have difficulty walking. When Parkinson's patients are having a difficult time keeping that good quality on time, those are the types of patients that we begin to think about for deep brain stimulation. Deep brain stimulation is a therapy that's really designed to improve the Parkinson's patient's quality of life. The way that it does that is it increases or extends the amount of good on time.
In most centers, you'll come in the day before and be screened by an anesthesiologist. They'll make sure that you're a suitable candidate for the DBS operation and that you're going to be able to tolerate it. In some centers, they'll even get a specialized MRI scan of your brain the day before the operation. In most centers, you'll actually stay awake during the operation, and it's important to understand that. In fact, if you have some fear of being awake, we may want to have some counseling for you before you end up in the operating suite so that you understand how it's going to happen.
On the day of the operation, you'll come in and they'll put a heavy hat called a head frame, and they'll attach it to certain aspects of your skull. They're either going to get another scan called a CT scan or another MRI with this heavy hat on. They're going to turn your brain into a virtual reality space. They'll find a spot in the brain. They'll point to it, and then the neurologist or the neurophysiologist will pass a tiny little electrode called a microelectrode into the brain. The tip of that electrode is about the size of a hair.
What we'll do is drive that electrode down and listen to the cells. As we go through different brain regions, every brain region has a different language. As you cross from the border from one area to another, we'll decode that and try to create a three-dimensional map of where the structures are in your brain. Once we know where the right location is, we'll put an electrode in, and the electrode is about a millimeter in diameter. This is small and has four little contacts on it, and those contacts we can stimulate with thousands of different combinations to try to improve your symptoms of Parkinson's.
Dr. Michael Okun 00:03:03
Once the electrode's in place, they'll test it in the operating room, so you may even see some results during the operation. In some cases, we don't see tremendous benefits or side effects in the operation, but that doesn't necessarily mean that you don't do well if that structure's been mapped properly. Once the operation is complete, you'll get a battery pack right up underneath your collarbone and attached to a wire that goes up underneath your skin to control that device, and it's like a pacemaker. Once that pacemaker's in place, and once the brain has had a chance for a few weeks after that operation to cool down, your neurologist will start programming you.
Usually, you’ll program once a month on average for about the first six months. Once they find the right stimulation parameters, they'll also adjust your medications around and find the right mix for you. It's an ongoing process. It's not a light switch, although if the right patients are chosen for this operation, the results can really be quite dramatic, and they can improve the symptoms that the patient wanted improved as long as the education has happened and the patients are completely informed about what the risks and benefits of the operation are.
This operation is not completely risk-free. In 90% of patients who undergo deep brain stimulation, they don't have many problems. But it's very important for you to understand that there are complications and there are risks. Whenever we pass these little microelectrodes and these little DBS leads into the brain, we can collide with blood vessels or we can damage some of the brain structures, and you can get things like strokes or bleeds. Certain side effects can happen in patients, like weakness or numbness, changes in vision, and changes in speech. Infection is a very real risk, which can happen in 5% or more of the cases.
What happens when we see infections? Sometimes we have to take the hardware out, treat the infection, and then reimplant it. We also worry about worsening thinking, worsening the cognitive function of patients. If you have any pre-existing depression or anxiety, we want to make sure that's treated and stable because we don't want to make you worse with the operation. These are hardware parts, so they can break. You may need to get a wire replaced or a box replaced at some point during the course of your therapy, so it's important to have regular follow-up visits with your doctors. The risk-benefit ratio in well-selected patients is very good.
Deep brain stimulation (DBS) is a surgical therapy used to treat certain aspects of Parkinson’s disease (PD). This powerful therapy most addresses the movement symptoms of Parkinson’s and certain side effects caused by medications.
This video features a voiceover from Dr. Michael Okun, the National Medical Advisor for the Parkinson's Foundation.
Controlando los síntomas de la enfermedad de Parkinson
Hay mucho que saber acerca de la enfermedad de Parkinson. Aprenda cómo se trata y, lo más importante, cómo llevar una vida mejor con Parkinson.
El Parkinson es una enfermedad individualizada. Si bien la experiencia de cada persona con el Parkinson es única, cuanto más sepa, más empoderado estará para desempeñar un papel activo en su autocuidado y manejar su vida con Parkinson.
Get out and move with your community! Every dollar raised supports the Parkinson’s Foundation mission to make life better for people affected by Parkinson’s disease (PD). At Moving Day Community Walks across the country, we’re fighting Parkinson’s and celebrating movement — proven to help manage Parkinson’s symptoms — and we’re doing it together. The Moving Day Community Walk Program is a complement to the Parkinson’s Foundation Moving Day, A Walk for Parkinson’s. These walks are family-friendly and help the Foundation make life better for people with PD.
The Community Walk program offers volunteers an opportunity to organize a walk in their own community that does not have a Moving Day event. The program leverages the personal experiences and community leadership of passionate volunteers to promote Parkinson’s awareness and raise funds for the Parkinson’s Foundation.
This program highlights the importance of identifying your care team early, engaging with them regularly, and understanding how each professional contributes essential insights, resources, and strategies for maintaining a sense of control, independence, identity and lifestyle.
Through guided breathwork and visualization, you will be encouraged to step into the present by releasing thoughtful roadblocks and opening your mind to new opportunities and experiences that can assist in managing Parkinson’s disease.
