Raise Awareness

10 Most Popular PD Health @ Home Virtual Events

May 04, 2020

PD Health @ Home features new weekly Parkinson’s disease (PD) wellness and education virtual events designed for the PD community. We have new, exciting upcoming events scheduled that help promote mindfulness, highlight COVID-19 issues, exercise classes and more. Remember to join us and catch up on previous virtual events now.

These are the top 10 most popular PD Health @ Home episodes YOU found to be the most helpful:

1. Emotional Stress, Mindfulness Meditation and Mindful Movement

In this Mindfulness Monday, we introduce you to mindfulness and discuss the role emotional stress plays on the brain. Event recorded April 6.

Watch Now
See Upcoming Mindfulness Monday Events

2. Stress and Aging

In this Mindfulness Monday, we discuss Parkinson’s and aging, stress management and what successful aging looks like. Event recorded April 13.

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See Upcoming Mindfulness Monday Events

3. Expert Briefing: PD and Medication: What’s New?

In this Expert Briefings Tuesday event, Fernando Pagan, MD, highlights the latest PD medications and what is next in Parkinson’s treatments. Event recorded April 14.

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See Upcoming Expert Briefing Tuesday Events

4. Mind, Mood & Motion

In this Expert Briefing Tuesday, we highlighted the changes that can occur in thinking and memory for people with Parkinson’s and their care partners and the steps you can take to reduce the effects these symptoms might have. Event recorded April 7.

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See Upcoming Expert Briefing Tuesday Events

5. Ask the Expert: How Can I Benefit from Telemedicine?

In this Wellness Wednesday, Roy Alcalay, MD, explains what to expect from a telehealth appointment, the benefits of telemedicine and provides helpful tips for your next appointment.

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See Upcoming Wellness Wednesday Events

6. Ask the Expert: Parkinson’s & Hospitalization

In this Wellness Wednesday, Dr. Okun reviews hospital safety for people with Parkinson’s who may be experiencing COVID-19 symptoms and answers questions from our Facebook community. Event recorded April 8.

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See Upcoming Expert Briefings Tuesday Events

7. Staying Sane through Quarantine

In this Take Time Thursday, we discuss quarantine and social distancing challenges and ways to cope with this new normal. Event recorded April 20.

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See Upcoming Take Time Thursday Events

8. Overcome Exercise Apathy with Live Fitness Demos

In this Take Time Thursday, we help you break some exercise apathy habits while at home and show you some exercises that get you out of your chair. Event recorded April 23.

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See Upcoming Take Time Thursday Events

9. Fitness Friday: Posture

In this Fitness Friday, Physical Therapist Joellyn Fox leads you through our PD-tailored at-home fitness class. This session will help you improve your posture through seated stretching and core exercises. Event released April 10.

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See Upcoming Fitness Fridays Events

10. Fitness Friday: Arms

In this Fitness Friday, Joellyn Fox will guide you through exercises that can help improve arm strength, highlighting correct form, chair and standing exercises. Event released April 24.

Watch Now
See Upcoming Mindfulness Monday Events

VIEW ALL UPCOMING PD HEALTH @ HOME PROGRAMS HERE

Check out our weekly PD Health @ Home events now. Join us and catch up on previous virtual events.

Tips for Daily Living

10 Tips for Improving Dental Health with Parkinson’s

Jun 14, 2022

Taking care of your oral health is especially important for people with Parkinson’s disease (PD). Parkinson’s can impact the health of the mouth, teeth and jaw and make dental care challenging.

June is National Oral Health Month. Read on to learn about common dental problems in people with PD and tips for maintaining oral health.

Dental Risks Related to PD

Oral health problems arise directly and indirectly from the progression of Parkinson’s. PD-related dental challenges may include:

Too much saliva. Excessive saliva can lead to a fungal infection at the corners of the mouth.
Too little saliva. Also known as dry mouth, too little saliva can increase the risk of cavities.
Cavities. A cavity is a breeding ground for bacteria that can easily infiltrate the blood stream and harm other parts of the body.
Infected teeth and gums. Your mouth can harbor bacteria that may infect devices, such as deep brain stimulation electrodes, prosthetic hips and knees, vascular stents and grafts.
Altered face and tongue muscle function. These conditions may affect speech and chewing.
Swallowing problems. Poorly chewed food can increase the risk of choking and aspiration.

If you take a medicine with a warning to tell your doctor about infections, make sure to report cavities, loose teeth or inflamed gums. Some immune-suppressing medications can significantly reduce white blood cells, which increases the risk for bacteria-causing dental diseases to spread elsewhere.

Barriers to Dental Health in PD

Symptoms of PD may hinder your ability to maintain proper oral hygiene, and can potentially worsen dental problems.

Movement Symptoms
Nearly half of all people with PD have difficulty with their daily oral hygiene regimen, due to movement symptoms such as rigidity and tremor. These symptoms also make going to the dentist more difficult and uncomfortable, as weakened swallowing ability can increase the risk of choking during treatment.

Additionally, people with PD who have been on medications like levodopa for several years may begin to develop involuntary movements, which can affect the jaw and cause cracked teeth and teeth grinding. This may create problems during dental exams and at home.

Non-movement Symptoms

Non-movement symptoms of Parkinson’s, such as apathy, depression, and forgetfulness, may lead a person with PD to pay less attention to their daily dental health. People who experience cognitive changes also may be more likely to miss dental appointments and less likely to report dental pain to their care partners or dentist, leaving issues unaddressed for too long.

Other behavior changes can affect nutrition. People with PD require greater caloric intake than those without PD, but some people experience decreased appetite. Combined with poor dental hygiene, this often leads to a tendency to avoid nutrient-rich foods, like vegetables, that require the ability to chew well. Some people may also develop a “sweet tooth,” which may put them at greater risk for cavities.

10 Tips for Improving Dental Health

Follow these tips to keep your oral health in check while managing PD:

Stay hydrated. Always eat and drink in an upright position, taking small bites and sips.
Brush after every meal for two minutes. If it is not possible to brush after a meal, rinsing the mouth with water will help.
Remove dentures after each meal, brush and rinse them. Brush or clean dentures in a solution at night.
Use a toothbrush with a large-handled grip and soft bristles. If you prefer an electric toothbrush, be sure it is an oscillating, rotating power toothbrush.
Do not use products that include alcohol, as they make dry mouth conditions worse. Your dentist can recommend special products like toothpaste and gels that can help with dry mouth and other oral health problems.
Floss. If movement symptoms make flossing difficult, consider using a water pick instead.
Avoid using mouthwash. Mouthwashes are typically discouraged for people with PD because of the risk of choking. Ask your doctor or dentist if it is safe for you to use mouthwash.
Notify your dental office of your PD symptoms. This will help the dentist and the staff provide better treatment.
Schedule dentist appointments wisely. Plan short dental appointments for the time of day your symptoms are most effectively controlled.
Have your dental health providers work collaboratively with your other healthcare providers to improve oral health-based quality of life.

If you have concerns about your oral health or you are experiencing dental challenges that may be related to PD, contact your doctor or dentist. Your care team can help you find strategies to take care of your dental health.

To learn more about managing swallowing issues and oral care with Parkinson’s disease, listen to our podcast.

Tips for Daily Living

Newly Diagnosed: Living Your Best Life with Parkinson’s

Jun 25, 2020

Couple sitting on a dock looking out on to the water

A Parkinson’s disease (PD) diagnosis is life-changing, but it doesn’t have to keep you from living your best life. If you are newly diagnosed, you are not alone. The Parkinson’s Foundation is here to assist and empower you at every stage to ensure you continue living well.

This article is based on a Parkinson’s Foundation Expert Briefings webinar “Newly Diagnosed: Living Your Best Life with Parkinson’s" by Jenna Iseringhausen BSN, RN, Marlene and Paolo Fresco Institute for Parkinson's and Movement Disorders, NYU Langone Medical Center, a Parkinson’s Foundation Center of Excellence.

How Parkinson’s is Diagnosed

There is no specific test for Parkinson’s disease. Doctors look at a person’s symptoms and history, and may use various tests to make a diagnosis. A person must have two of these main movement or motor symptoms to be considered for a PD diagnosis:

Slowness of movement, known as bradykinesia
Stiffness, or rigidity
Loss of balance, also called postural instability
Tremor or shaking

Just as each person with PD is unique, so is each person’s Parkinson’s disease experience. Possible non-movement symptoms (some of which can occur years before a diagnosis) can include:

The Weight of Change

For some, a PD diagnosis is a relief ― an explanation for ongoing changes or symptoms. For others, it can take an emotional toll, both on the person with Parkinson’s and their loved ones.

Take time to acknowledge your feelings and to address any mood changes. Parkinson’s disease itself can affect you physically and can cause depression, anxiety or apathy. Take control of the things you can. Enlist the help of loved ones. Minimizing worry and building support can boost your well-being.

When you’re ready, the Parkinson’s Foundation recommends 5 steps you can take throughout your journey to support optimal living.

1. Set and Prioritize Goals

Start small. Take time to think about how you want to live. Consider any obstacles standing in the way. Set specific, achievable goals to start working toward meaningful change in your life. Enlist loved ones or friends to help you.

As you determine and master smaller, individual goals, reward yourself for your commitment. Continue to build off of your achievements.

2. Talk About It

Communication is key to well-being for people living with Parkinson’s and their care partners. Finding someone you can each to talk to about how you’re feeling is vital. It can also be the first step in building community and outside support.

Family and friends, community or spiritual groups, and even people who share a hobby can be potential sources of assistance and support. One way the Parkinson’s Foundation community connects is through online PD Conversations discussion groups. These include the Newly Diagnosed and Caregiving forums.

3. Create Healthy Habits

Establish healthy habits early, so it becomes part of your daily routine. Healthy eating that incorporates good nutrition can improve medication delivery and ease symptoms. Research shows a Mediterranean diet (emphasizing plant-based staples and healthy fats, while minimizing meat) can improve health.

Create a regular sleep schedule and bedtime routine to ensure restful sleep, which boosts mood. Try to maintain dental hygiene. Parkinson’s can affect mouth, teeth and jaw health. Brush teeth twice a day, floss, rinse frequently and increase hydration.

Exercise class sitting on stability balls

4. Be Active

Physical activity can improve many PD symptoms and may also offer neuroprotective benefits. Data shows exercise is important to well-being in PD.

Embrace vigorous exercise early on to improve mood, movement, balance and walking speed. Exercise can also benefit sleep and relieve constipation. Choose an activity you love that includes stretching, aerobic and strength activities.

5. Find an Expert

Seek a neurologist, a doctor who works with brain and central nervous system conditions such as Parkinson’s. If possible, find a movement disorder specialist ― a neurologist with additional training to treat people with Parkinson’s at every stage.

These experts can often recommend other PD specialists ― nurses, social workers, occupational or physical therapists and speech-language pathologists. A comprehensive care team approach to treatment ensures a high quality of life. Also known as palliative care, this team building begins at diagnosis, enlisting specialists ― as needed ― who communicate with each other to treat Parkinson’s changing physical, emotional, social or spiritual needs.

Get Started

Living well with PD is possible. Incorporating these five steps, in any order, will empower you to live your best life. Relying on medically diverse allied care specialists to help manage your PD symptoms will ensure a high quality of life.

The Parkinson’s Foundation is here for you. Visit the New to Parkinson’s section of our website to learn more and order the Newly Diagnosed kit or contact our free Helpline at 1-800-4PD-INFO (1-800-473-4636).

Tips for Daily Living

15 Ways to Exercise Your Brain This Summer

Jul 06, 2020

Summer is here! Even though coronavirus and social distancing may still play a part in our day-to-day lives, we want to help you feel “on” all summer long. Bring the sunshine into your home with new ways to stay mentally active.

This summer, exercise your brain with these exercises that will help you remember the good times, make new memories and plan for what’s next.

Remember the Good Times

Having difficulty with memory is a common cognitive symptom of Parkinson’s disease (PD). When it comes to long-term memory, memories from the distant past are often more preserved than recent memories.

Exercise you mind and stimulate your long-term memory with these activities:

1. Make a scrapbook ― digital or print.

2. Watch old movies or catch up with PD educational videos on our YouTube channel ― watch videos that share tips from people in the PD community to caregiving to videos in Spanish.

3. Stay social. Contact an old friend or make new ones by calling our Helpline at 1-800-4PD-INFO (473-4636) to find your nearest support group or wellness class.

4. Listen to your favorite summer songs.

Make New Memories

As Parkinson’s progresses, some may experience trouble with short-term memory and retaining new information. Exercise is a the most important activity you can do to keep your body and brain healthy.

Challenge this part of your brain with these activities:

5. Read books. Visit our PD library and start with Cognition: A Mind Guide to Parkinson’s. Reading is a complex task that requires multiple parts of the brain to work together.

6. Listen to our podcast. New to podcasts? Challenge yourself to learn how to subscribe and listen to the episodes that interest you the most.

7. Host a virtual game or karaoke night.

8. Exercise. Commit to a new at-home workout routine with virtual Fitness Friday exercise classes. Intense exercise can improve efficiency of your brain cells using dopamine and lessen PD symptoms.

9. Enjoy the outdoors. Remember to be safe, use your face mask and practice social distancing.

10. Bring nature indoors. Order a birdhouse kit online and hang it near a window, learn how to compost or start a garden!

Plan for the Future

The global pandemic most likely interrupted some of your plans for 2020. Take this at-home time to exercise optimism and plan for the new memories you would like to create.

Think big with these activities:

11. Make a travel bucket list. Engage your brain’s executive function and begin planning the options that seem most appealing, like a 2021 family trip or weekend getaway.

12. Try an educational webinar. Register for all the upcoming free Expert Briefings webinars that interest you. Stimulate some neurons by learning something new.

13. Write your PD story. Creativity provides excellent mental stimulation. Vary your activity to keep the mind strong and healthy. Submit your My PD Story .

14. Plan to attend a Parkinson’s Foundation event. Whether in-person or online, attending social events help you retain cognitive sharpness.

15. Take steps to #Plan4PD. It is never too late or early to plan for Parkinson’s. Not sure where to start? Order our hospital safety kit and check out different ways you can plan for PD from home.

Join us on social media to #SummerOn with the Parkinson’s Foundation for summer activities, tips, resources and more.

Podcasts

Episode 129: Using the New Parkinson’s Exercise Recommendations as Part of Your Treatment Plan

Regular exercise in its various forms is one of the most important things that people with Parkinson’s disease (PD) can do for themselves. It can promote aerobic conditioning, strength, balance, and flexibility and help slow the decline in mobility while improving quality of life.

Findings from the Parkinson’s Foundation Parkinson’s Outcome Project, the largest ever clinical study of PD, suggest that people with PD engage in at least two and a half hours of exercise each week to improve quality of life. Thus, recognizing the importance of exercise, the Parkinson's Foundation, in collaboration with the American College of Sports Medicine, has created new Parkinson's Exercise Recommendations to ensure that people with PD receive safe and effective exercise programs and instruction.

These guidelines were developed and reviewed by a panel of exercise and Parkinson’s experts who recommended the frequency, intensity, time, type, volume, and progression of exercises that are safe and effective for people with PD. They include four domains important for people with PD: aerobic activity; strength training; balance, agility and multitasking; and stretching. Each recommendation is paired with specific types of activity and special safety considerations for people with PD. Besides addressing people with PD, the guidelines also are a framework for exercise professionals to help develop safe and effective programs to improve quality of life for the PD community.

In this episode, we have two exercise professionals specializing in Parkinson’s disease. Daniel Corcos, PhD, a professor in the Feinberg School of Medicine at Northwestern University in Chicago, was an outside reviewer of the Parkinson’s Foundation’s Exercise Competencies and Criteria Initiative, which spells out general principles for people with PD to engage in endurance exercise. He explains endurance (cardiovascular) exercise, in which one aims to raise the heart rate to specific levels. Lee Dibble, PhD, PT, ATC, professor and chair of the Department of Physical Therapy and Athletic Training at the University of Utah in Salt Lake City, discusses resistance training, also called strength training.

Released: May 17, 2022

Lee Dibble, PT, PhD, ATC is a Professor and the Department Chair of the Department of Physical Therapy and Athletic Training at the University of Utah. He earned a PhD from the University of Utah with a focus on Motor Learning and Motor Control. His research has examined skeletal muscle and functional responses to resistance training, as well and postural and gaze stability in persons with neurologic conditions such as Parkinson’s Disease, Multiple Sclerosis, vestibular hypofunction, and concussion.
Dr. Daniel Corcos, PhD is a tenured Full Professor at Northwestern University. The primary research interests of Dr. Corcos are aimed at helping people with Parkinson’s disease improve their quality of life, improve their mobility and cognition, and slow down the rate at which their disease progresses. Integrating neuroscience and expertise in conducting clinical trials, the Dr. Corcos’s research focuses on interventions (such as resistance exercise and endurance exercise) that aim to reduce the symptoms of the disease and delay the rate at which the disease progresses.

Want more?

Don't forget to subscribe! There are many ways to listen: Apple Podcasts, TuneIn (Amazon Echo), Spotify or RSS Feed. (Need help subscribing? See our quick guide.)

For all of our Substantial Matters podcast episodes, visit Parkinson.org/Podcast.

My PD Story

People with PD

Paolo Tatafiore

My name is Paolo Tatafiore. I'm 60 years old, born in Italy, now a permanent resident of the U.S. I will soon become a citizen. I used to be a concert pianist. You can check out some of my performances on YouTube. Two years ago, the first symptoms of a movement disorder started showing up out of the blue.

While performing on stage I was making mistakes I had never made before, and I realized that there was something wrong with my right hand. I was losing control of the fingers. A few months later (in October 2020) I developed a steady tremor in my right arm, that radiated to my right leg and neck. Muscles stiffness and twitching also affected the same areas. I had to give up concerts completely.

The next step was obviously to visit a neurologist. He diagnosed me with Parkinson’s disease (PD). I was devastated. My life disrupted.

At the moment, I receive care from a team of doctors at the University of Miami, a Parkinson’s Foundation Center of Excellence. I take a lot of medication in order to try and keep the tremor at bay. Without it I'm just a useless shaking mass of flesh and bones. My current neurologist is Danielle Shpiner, MD. She is one of the best doctors I have ever met. Patient, compassionate, excellent listener, she has all the knowledge and has answers to all questions. She is up to date with the cutting edge research.

We are now discussing the next steps for me to be put on schedule for a deep brain stimulation (DBS) surgery that will hopefully substitute the most part of the medication in controlling and eliminating the tremor and other symptoms.

Paolo Tatafiore riding an exercise bike for Revolution 2022

She put me in touch with social workers of the University and they introduced me to Parkinson’s Revolution. I want to do my part helping raise funds for initiatives that help the Parkinson’s community.

A book inspired me to exercise consistently to help with my symptoms. It has been about two years, and I have been taking long brisk walks every other day (two or three miles), alternating with short slow walks the remaining days. Sometimes instead of walking I bike ride on the boardwalk in front of the beach. I take a day off every now and then if I feel exhausted.

After two years I can say that the tremor has stopped in the right leg and the twitching has reduced to a minimum. They remain in the right arm though, which is not as much affected by walking and biking. I am now intensifying exercises with and without weights for the arms and neck and I hope to slow symptoms in the arm too, because I think that I have been able to reverse the symptoms in the leg. I can't find any other explanation. If it were the medication that produced the reversal, it would have done something for the arm as well. That didn't happen.

My advice for people who are new to Parkinson’s is to not rely on medication alone. Medication is a temporary suppressor of the symptoms. Everyone knows that there is no cure for Parkinson's disease at the moment. The only proven thing that keeps the disease at bay is exercise. Don't get discouraged, get out and shake it!

It may be hard at first but be consistent and you will get results. If you get stiff while walking, don't give up! Keep doing it, it takes some time but then the muscles will loosen up and you will walk better. It will improve your mood too, as opposed to sitting in the house and getting depressed!

Get moving with your community at a Parkinson’s Foundation fundraising event near you!

Register for Parkinson’s Revolution

Find a Moving Day near you

Caregiver Corner

Answering the Top Care Partner Questions About Mental Health

Jul 24, 2020

“Mental health includes our emotional, psychological and social well-being. It affects how we think, feel, and act,” according to the Centers of Disease Control. When it comes to living with Parkinson’s disease (PD) ― in any stage ― or caring for a loved one with Parkinson’s, it can become difficult to manage and maintain your optimal mental health.

“Your Questions: Mental Health” was a popular session held during the Parkinson’s Foundation 2020 Care Partner Summit | Cumbre Para Cuidadores, where care partners from all over the world asked their mental health questions, answered below.

Panelists included: Linda Pituch, Helpline Senior PD Information Specialist; Travis Turner, PhD, Assistant professor and Director of the Neuropsychology Division, Medical University of South Carolina; Caryn Balaban, MPH, Care Partner, former Parkinson’s Foundation People with Parkinson’s Council member.

People with PD have problems managing the dopamine levels in the brain, which can also be responsible for changes in mood. Common mood changes in PD are depression, apathy and anxiety. Anger and irritability are also common, whether as symptoms, side effects of medication or simply frustration that arises from feeling a loss of control.

Mood swings are a common symptom of Parkinson’s and “it’s important to know where the swing is to and from,” said Dr. Turner. This can help the care partner better understand what is causing their loved one’s change in mood, and how they can help their loved one pivot.

Active listening skills can be effective in de-escalating frustrations and mood changes because your loved one will feel understood. Examples of active listening include asking questions such as, “I think (this) is what you’re saying.” If your loved one with PD is struggling with mental health changes ask yourself: have they been sleeping well? Have they been socializing?

Exercise: Exercise is the best way to combat Parkinson’s symptoms. This is no different with mental health! Maintain an exercise schedule and make it fun. Rock Steady Boxing classes, virtual exercise classes or planning a weekly socially distanced walk with a friend can keep exercise in the routine while being fun.

Socialize: Spending time with friends and family is a great way to help alleviate depression, apathy and other mood changes. Get involved with a PD support group, volunteer, meet others through in your place of worship or an exercise group. There are even singing groups designated for people with PD. If you have a specific interest, consider starting your own group.

Being a care partner is a full-time job and it is important to take care of your own mental health, too. Linda reminds care partners to “give yourself a pep talk that not every day can be a good day. Not every hour can be a good hour — but you have gotten this far and you will do what is needed,” she said.

“We conduct regular maintenance on our cars — why don’t we regularly check up on ourselves?” Seek help professionally or from a trusted friend if you need it. Remember to take breaks — utilize people in your life, or external resources, to allow you respite from caregiving.

It can be difficult to work up the drive to exercise when we feel good, much less when apathy strikes. However, exercise can help. Exercise groups are great resources for community, accountability and it helps with symptom management.

Understandably, in the time of COVID-19 it can be more difficult to exercise and socialize. Maximize Zoom media and virtual meeting apps, texting, calling friends and family in the comfort of your own home. Motivating your loved one with Parkinson’s can be especially difficult when they are apathetic. Linda advises that you ask yourself: “what caught their interest before the diagnosis? What was it that always used to perk them up?” and use that answer to help them feel engaged in something.

When Caryn’s husband was diagnosed, he compared his social experiences to the flu. He disliked that he had to wear his disease rather than hold it inside — and that every person could see his disease. A tactic suggested by the panelists is to embrace the fact that your loved one might look and/or act differently than they used to, but people are less concerned with us than we are with ourselves. Oftentimes, friends and family quickly adapt to changes in your loved one’s communication or abilities.

Dr. Travis points out that psychotherapy or counseling is an effective way to help people process change. Affordability can be an obstacle, but some Medicare plans cover some individual psychotherapy sessions per year. A type of therapy, Cognitive Behavioral Therapy can help you see things differently so that you create new behaviors and patterns.

Staying Social During A Pandemic

As COVID-19 continues to keep us social distancing at home, we know that staying social can be difficult and feel like a low priority. Try our virtual resources for care partners and people with Parkinson’s until you find the one that works best for you:

1. PD Conversations: Ask questions or share your tips with others in our community through our Caregiving, Newly Diagnosed and Symptoms discussion groups.

2. PD Health @ Home: Join us for new weekly online events designed for you.

3. Expert Briefings: These educational webinars are led by an expert and dive into critical PD topics. Register for upcoming webinars and participate in the live broadcasts.

4. Follow us on social media: We love hearing from you on Facebook, Instagram and Twitter.

5. Volunteer: Complete our quick Volunteer Interest Form and find new online volunteer opportunities.

Watch the full recording of this session and all 2020 Care Partner Summit | Cumbre Para Cuidadores sessions now

Learn More

Learn more about Parkinson’s and mental health in the following Parkinson’s Foundation resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636):

Watch: Mental Health and PD
Listen: More Than a Movement Disorder: Addressing Mood &Coping and Mental Health in a Medical Setting
Read: Mood: A Mind Guide to Parkinson's Disease

Raise Awareness

8 Useful Parkinson’s Foundation COVID-19 Resources

Aug 13, 2020

With so many people with Parkinson’s disease (PD) staying safe indoors, the Parkinson’s Foundation has launched resources articles and virtual programs designed to support the PD community during the COVID-19 pandemic.

Our new virtual programs and content focuses on priority topics like exercising at home, COVID-19 preparedness, stress management, telemedicine and more. Remember, our Helpline 1-800-4PD-INFO (473-4636) is always here to help, especially now.

“As someone living with Parkinson’s disease, I know the importance of communications and providing online resources while the more at-risk PD community is socially distancing at home,” said Denise Coley, a member of the Parkinson’s Foundation People with Parkinson’s Council.

Get engaged and stay up to date with these free virtual events:

1. Parkinson.org/COVID19

With the rise of COVID-19, the Parkinson’s Foundation has continuously published new articles where we address your top questions about Parkinson’s and COVID-19.

LEARN MORE

2. PD Health @ Home

Our newest program PD Health @ Home was designed to keep the PD community engaged and moving, our new weekly online events address can help you ease the challenges of isolation. Join us for:

Mindfulness Mondays: learn relaxation techniques and boost your brainpower
Wellness Wednesdays: an expert speaker addresses a critical PD topic every week
Fitness Friday: PD-tailored online fitness program

Learn More

3. Virtual Moving Day

This fall, Moving Day is going virtual! Every event will host a local, virtual version you can follow and MOVE with at home. All funds raised through Moving Day help us fund cutting-edge research and provide expert care for the one million Americans living with Parkinson’s.

Join us at a fall Moving Day: Fargo Moorhead, Rochester, Buffalo, New Jersey, Boston, Columbus, Venice, DFW, Atlanta, Nashville, Northwest Arkansas, Chicago, NC Triangle, Jacksonville, Palm Beach, Los Angeles, Phoenix and Miami.

4. PD Hospitalization and COVID-19 Fact Sheet

This fact sheet is full of crucial information for healthcare professionals in the case you are hospitalized during COVID-19.

DOWNLOAD NOW

5. Expert Briefing Webinars

Announcing our new season of Expert Briefing webinars! Every live broadcast will feature a PD expert and an opportunity to ask questions. Sign up for an upcoming webinar now.

6. Podcast

Our podcast has not skipped a single episode in 2020. Join us as we interview a new PD expert every other week. Catch up with recent episodes: Managing Anxiety with PD and Personalized Medicine: The Voice of the Patient.

LISTEN NOW

7. Helpline 1-800-4PD-INFO

Contact our Helpline specialists for your PD questions ― from COVID-19, hospitalization and more. Available in English and Spanish, weekdays from 9 a.m. to 7 p.m. ET.

CALL 1-800-4PD-INFO (473-4636) OR EMAIL HELPLINE@PARKINSON.ORG

8. Care Partner Summit Videos

Watch our 2020 Care Partner Summit at your convenience. Learn care partner tips from our panels covering key care partner topics including cognitive changes, mental health, self-care, practical planning and more.

WATCH NOW

Tips for Daily Living

Dr. Michael Okun Shares Top Tips from Living with Parkinson’s Disease: A Complete Guide for Patients and Caregivers!

Aug 20, 2020

Group of women balancing on bar at ballet class

Recently, worldwide Parkinson’s expert Michael Okun, MD, shared top tips from his book Living with Parkinson’s Disease: A Complete Guide for Patients and Caregivers, which is available now.

There is so much that we can do to help people with Parkinson’s disease (PD) have great lives. Here are just some of the tips that Dr. Okun covered in his Parkinson’s Foundation Facebook Live event, Living with Parkinson's New Book Release, on August 4.

Dance, Dance, Dance!

Exercise is like a drug and we know that it can help with rehabilitation for people with Parkinson’s greatly. We are seeing tangible benefits from exercise. There is a part of the brain that can, in certain circumstances, overcome deficits and exercise can be used as a treatment. Dance is a great option, so is Tai Chi. There are a lot of pearls in the exercise chapter of the book.

Nutrition – Can the Ketogenic Diet be helpful?

There’s not enough research to determine whether ketosis (a low carbohydrate diet that causes the body to break down fat and create an acid called ketones that fuels your body and brain) is beneficial for Parkinson’s. Is the Ketogenic (also known as Keto) diet helpful? Maybe.

The biggest advice: be careful and follow the advice of your medical team first and foremost with nutrition. The only way we will find out if there is something to this theory is with proper studies and control groups. There are some exciting, emerging studies in nutrition and diets for Parkinson’s on the way.

The Importance of Sleep

If you don’t have a good night’s sleep, it’s all but guaranteed that you will not have a good day the next day. Many people don’t know that they are not sleeping well until they get a sleep study. This is something that we need to work on in treating Parkinson’s ― focusing on the importance of sleep as sleep problems are very common with Parkinson’s.

If you find you are falling asleep frequently during the day, you likely have a sleep problem. There are options ― whether it’s decreasing your dosage of dopamine or looking into adding other prescriptions. Talk to your doctor about your prescription and looking into getting a sleep study ― a sleep study can really change your life! One of the chapters in Living with Parkinson’s Disease focuses on the treatment of neuropsychiatric effects and we discuss sleep specifically.

Depression and Parkinson’s

Depression is the largest unmet hurdle in Parkinson’s. What we realized in writing Living with Parkinson’s Disease was demoralization was also a huge unmet need, which can occur in one in five patients. It’s not just that you are depressed or have anxiety or even experience hallucinations, it’s that you are demoralized. There are therapies that can help greatly with demoralization. Treatment is so important ― you can have a better life! We are too stuck on the name of the depression pill and we should refocus on how we administer the treatment.

Parkinson’s and Hallucinations

Most hallucination medications block dopamine. Blocking dopamine with Parkinson’s will make symptoms worse. There are some medicines for other issues ― like for gut issues and headaches that also block dopamine and we need to be on the lookout for that.

When we think about hallucinations, we must look for drugs that will not block dopamine ― there are drugs that do this! Before we get to medications, there needs to be a thorough physical examination to ensure other issues are treated first. Check out Chapter 8 in Living with Parkinson’s and talk to your doctor for more information. Dr. Okun also offers more advice on the Facebook Live event.

One of the last tips from the Facebook Live event comes from a viewer and is a really important message: “If you are not a fighter, learn to be one. How well you live with Parkinson’s is up to you.”

Michael S. Okun, National Medical Advisor

For more tips from Dr. Okun, check out the book, Living with Parkinson’s Disease: A Complete Guide for Patients and Caregivers!

About the author: Michael Okun, MD, is considered a world's authority on Parkinson's disease treatment and research. He is currently Executive Director of the Fixel Institute for Neurological Diseases, Chair of Neurology at the University of Florida, a Parkinson’s Foundation Center of Excellence and the National Medical Director for the Parkinson's Foundation.

My PD Story

General PD Community

Parkinson's Boxing Program

University of Texas Southwestern Medical Center’s Parkinson's Boxing Program in Dallas, TX

When Dr. Sam T’s doctor told him about the Parkinson’s Boxing Program, he readily agreed without knowing what to expect. “I had been working with a trainer for a few weeks and was happy to have another outlet for exercise” Dr. T said. “My first thought was this would be strictly an exercise class, but it turned out to be much more.”

The 12-week community boxing class is designed for people living with PD and their families. Thanks to the Parkinson’s Foundation community grant and the donation of space at the Preston Hollow United Methodist Church, we are able to provide this class at no cost to the participants. There are two classes per week consisting of high intensity boxing activities: heavy bag work (allowing for punching sequences), cone drills, and strengthening exercises focused on the lower extremities and core.

The class utilizes students from The University of Texas Southwestern Medical Center Department of Physical Therapy to help coach, guard and encourage the fighters. This program is beneficial for the boxers as it is a high intensity exercise built on community, which is good for the body and the mind. In addition, we expose and train physical therapy students to grow into excellent clinicians who are better prepared to serve those living with PD. “I want to thank the student volunteers who came to encourage and help us. They were enthusiastic and made the time fly by,” Dr. T said.

The Parkinson’s Foundation community grant supports the Dallas PD community. Although the changes in strength balance, and mobility have been exciting, the feedback of the participants on what they gain from the community atmosphere has been so encouraging! “The other people in the class became friends. We were able to discuss our symptoms and problems in ways only someone with PD understands. Those friendships became as important to me as the exercise itself. I benefited a lot from the program and recommend it for others who have PD, ” Dr. T said.

The outcomes have been remarkable as expected, as we track the fighter’s progress before and after the program. We have seen substantial improvements in functional strength (floor to standing transfer), dual task parameters (walking while counting), self-selected walking velocity, backwards walking, and dynamic balance.

We plan to continue to raise money through grants and donations to continue to run this program in the Dallas area! We feel as though it is beneficial for the fighters and the student coaches.