Raise Awareness

Feel the Rhythm: Music Therapy and Parkinson's Disease

Group of people singing

Every year, the top Parkinson’s experts from around the world who treat people with Parkinson’s at a Parkinson’s Foundation-designated Center of Excellence (a department or clinic within a hospital that specializes in PD) convene to discuss the latest Parkinson’s research and treatments. This article summarizes the 2018 Center Leadership Conference presentation on music therapy led by Concetta M. Tomaino, DA, LCAT, MT-BC, Executive Director and Co-Founder of the Institute for Music and Neurologic Function in New York City. Read the articles covering some of the other topics discussed: intimacy issuesnew therapies in trial and oral health.

Music therapists are professionals who are academically trained and board certified to improve the everyday lives of their patients. More specifically, when people with Parkinson’s disease (PD) work with a music therapist they see improvements in movement symptomsspeech, cognitive issues and mental health. Through dance programs, choirs and drumming programs, music therapy helps people with PD maintain function, express creativity and experience a better quality of life.

Music therapy can help someone with PD with:

  • Balance: Stride length, posture and side-to-side movement can improve with music therapy.
  • Communication: Singing can increase volume and articulation, as well as swallowing function. Humming exercises can relax tense vocal folds.
  • Cognition: Singing lyrics can improve memory issues. Music-based cues can help with recall, recognition and attention span.
  • Mental Health: People with PD often experience anxiety, fatigue, sleep problems, depression and more. Music allows for self-expression and self-discovery that can combat these feelings.
  • Social Isolation: Music therapy, particularly group activities, allow for building connections with others, which can help with isolation.

What does a Parkinson’s music therapy class consist of? Led by a music therapist, a group class generally begins with a vocal warm-up that can be accompanied with drumming or hand instruments. While each class varies, they can include singing songs while following lyrics displayed on a large screen, singing familiar songs to motivate participants and jog memories, and singing exercises. Music therapy can also include dancing or seated exercises that help people with PD maintain range of motion, endurance, strength, coordination and balance.

Music therapy uses rhythm, melody and preferred movement to address issues that commonly affect people with PD, such as bradykinesia (a slowness of movement that can lead to difficulties with activities of daily living).

Why is rhythm so effective? Rhythm becomes a template for organizing a series of movements, as well as combat cognitive issues that affect movement function, such as attention and focus. Rhythm helps coordinate movement, stimulate attention spans and induce relaxation.

As long as participants can feel the beat, music therapy can help lead to better outcomes in physical exercise programs. Sometimes finding that is a challenge, but a music therapist can work to find a rhythmic pattern or musical style that resounds with you — making music therapy both effective and enjoyable.

For more information about music therapy or where to find a music therapist near you, contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) or Helpline@Parkinson.org.

Tips for Daily Living

The Basics of Oral Health and Parkinson’s

Man brushing his teeth

Every year, the top Parkinson’s experts from around the world who treat people with Parkinson’s at a Parkinson’s Foundation-designated Center of Excellence (a department or clinic within a hospital that specializes in PD) convene to discuss the latest Parkinson’s research and treatments. This article summarizes the 2018 Center Leadership Conference presentation on oral health by neuroscientist Cameron Jeter, PhD, The University of Texas Health Science Center at Houston; speech-language pathologist Linsey Heidrick, MA, CCC-SLP, University of Kansas Medical Center; geriatric dentist Marsha Pyle, DDS, University of Missouri-Kansas City; and moderator Irene Litvan, MD, UC San Diego School of Medicine. Read the articles covering some of the other topics discussed: intimacy issuesart therapynew therapies in trial and music therapy

Maintaining oral health is important for people with Parkinson’s disease (PD). Parkinson’s symptoms can easily complicate dental care. A panel of PD experts at a Parkinson’s Foundation conference recently discussed oral health and saliva management – two PD-related issues not discussed often enough.

When it comes to Parkinson’s and oral health, the goals are to preserve dental health and minimize the negative impact disease treatment may have. People with PD commonly experience problems related to the four “dreaded D’s” of oral health:

  • Dry mouth
  • Drooling
  • Dysphagia (difficulty swallowing)
  • Deadly oral bacteria

Why are these conditions dreaded? Beyond the discomfort and inconvenience, they impact quality of life and can even have the potential to create life-threatening situations for people with PD.

While many people think drooling is caused by excess saliva, in PD it is actually attributed to dysphagia. When severe, drooling can be an indicator of serious problems swallowing, which can cause people to choke on foods and liquids. In extreme cases, it can lead to aspiration pneumonia — the leading cause of death for people with PD.

Oral health problems arise directly and indirectly from the progression of PD. For example, people with PD often have dry mouth, which can be caused by the disease process or medication side effects.

Movement-related symptoms also present a challenge in PD oral care. Tremors can interfere with brushing and flossing. These problems can be compounded by depression or cognitive changes when some people’s ability and willingness to engage in routine dental care decreases. Then, as people have tooth and gum loss, their ability to chew well also decreases.

However, there are ways people with Parkinson’s can maintain oral health. These 11 tips from the experts can help with oral health and swallowing problems:

  1. Engage in frequent and thorough oral care. Be sure to brush right after every meal.
  2. Stay hydrated.
  3. Eat and drink in an upright position.
  4. Take small bites and sips.
  5. Avoid talking when eating.
  6. After eating a meal or snack, check the inside of cheeks for any food pocketing.
  7. Consider a special toothbrush (www.colliscurve.com) or adaptive grip aids to make toothbrushing easier. If you prefer an electric toothbrush, be sure it is an oscillating, rotating power toothbrush.
  8. If you experience dry mouth, try over-the-counter remedies. The ideal product will be sugar-free, have preventative qualities, be easy to apply and have a pleasant taste.
  9. Avoid products that include alcohol; they make dry mouth conditions worse.
  10. Your doctor or dentist can recommend special products like toothpaste and gels that can help with dry mouth and other oral health problems.
  11. Have your oral health providers work collaboratively with your other healthcare providers to improve oral health-based quality of life.

Visit our Dental Health page to learn more about Tips for Preventing Dental Problems and Treating Dental Issues.

Advancing Research

What’s Hot in PD? Tips for the Diagnosis and Treatment of Dizziness, Vertigo and Parkinson’s Disease

Woman sitting on bed holding head because she's feeling dizzy

Though dizziness and vertigo have been commonly reported in the setting of Parkinson’s disease (PD), the diagnosis may be missed and treatment may not be optimal. The terms dizziness and vertigo can be defined in many ways. Most experts agree that the terms refer to a sensation of spinning or whirling and that the sensation has been frequently associated with balance problems. The Parkinson’s Foundation 1-800-4PD-INFO (473-4636) Helpline and PD Conversations have received many questions on the topic of dizziness, vertigo and Parkinson’s disease. In this month’s What’s Hot in PD? column, I will review the topic and summarize the most common management strategies.

Van Wenson and colleagues recently analyzed a consecutive cohort of Parkinson’s disease patients. There were 305 patients and 49% complained of dizziness. Of these cases, 38% had orthostatic hypotension and 8% had benign paroxysmal positional vertigo. There were another 3% suffering from a less classical type of benign paroxysmal positional vertigo. The prevalence of benign paroxysmal positional vertigo in Parkinson’s patients was 5.3% and over 90% of cases improved with treatment (Van Wenson, 2013).

Common Causes and Tips to Cope with Dizziness and Vertigo in PD:

  • Orthostatic hypotension: a change in blood pressure when changing position from sitting to standing or from lying to sitting or standing. This condition is treated with hydration (6-8 glasses of water a day), compression stockings, adding salt to the diet and possibly by medications such as Florinef, Midodrine, Droxidopa, or Mestinon. Orthostatic hypotension, which can also be associated with syncope or “passing out,” is the most commonly overlooked cause of dizziness in Parkinson’s disease patients.
  • Medication-induced dizziness or vertigo: the most common drugs associated with dizziness or vertigo in PD are dopamine agonists. Medication-induced dizziness is typically treated by weaning the dosage and by slowly discontinuing the offending drug(s). Common drugs associated with dizziness include anticonvulsants, antihypertensives, antibiotics, antidepressants, antipsychotics, pain medications and anti-inflammatory drugs.
  • Deep Brain Stimulation (DBS): this surgical procedure can be associated with dizziness or vertigo. The issue usually emerges soon after surgical implantation. It is important to determine if the dizziness is present with the device activated or when the device is in the off position. The first step is to turn off the device and to observe and document if the sensation resolves. If the dizziness resolves, then check the location of the electrode in the brain and consider re-programming the device.
  • Benign Paroxysmal Positional Vertigo (BPPV) can be diagnosed using examination maneuvers such as the Dix-Hallpike maneuver. A common complaint of BPPV is dizziness when turning in bed or dizziness lasting only a few seconds. Referral to a physical therapist who is an expert in vestibular rehabilitation can be helpful. Alternatively, teaching the patient to use a maneuver such as the Semont maneuver can be a reasonable approach.
  • Migraine headaches: dizziness or vertigo can sometimes be the effect of migraine headaches. In most cases, treatment of the headache can resolve the dizziness. Some experts refer to this entity as migraine-induced vertigo.
  • Transient ischemic attack or stroke: sudden onset of dizziness, usually in the presence of other neurological signs, could possibly be a transient ischemic attack or stroke. If a stroke is suspected, you should seek medical attention immediately and undergo appropriate imaging and potentially stroke-related therapies.

Selected References:

Dr. Michael S. Okun
  1. Van Wensen E, van Leeuwen RB, van der Zaag-Loonen HJ, Masius-Olthof S, Bloem BR. Benign paroxysmal positional vertigo in Parkinson's disease. Parkinsonism Relat Disord. 2013 Dec;19(12):1110-2. doi: 10.1016/j.parkreldis.2013.07.024. Epub 2013 Aug 13. PubMed PMID: 23948517.

  2. Zeigelboim BS, Klagenberg KF, Teive HA, Munhoz RP, Martins-Bassetto J. Vestibular rehabilitation: clinical benefits to patients with Parkinson's disease. Arq Neuropsiquiatr. 2009 Jun;67(2A):219-23. PubMed PMID: 19547812.

You can find out more about our National Medical Director, Dr. Michael S. Okun, by also visiting the Center of Excellence, University of Florida Health Center for Movement Disorders and Neurorestoration. Dr. Okun is also the author of the Amazon #1 Parkinson's Best Seller 10 Secrets to a Happier Life and 10 Breakthrough Therapies for Parkinson's Disease.

Advancing Research

What's Hot in PD? Can Camicinal Improve Gastric Emptying and Absorption of Medications in Parkinson’s Disease?

Gas colon

Many people with Parkinson’s disease (PD) struggle with gastrointestinal issues. More specifically, the movements of the digestive system (known as gastrointestinal motility).

Evidence from recent studies has strongly suggested a link between the gastrointestinal system and Parkinson’s. An important next step for the field is to examine potential gastrointestinal treatments. In this month’s What’s Hot we will examine a recent randomized study of a medication that assists with moving things along in the stomach and intestines (known as a promotility drug) administered to people with Parkinson’s.

First, let’s review recent Parkinson’s-related gastrointestinal studies. Pathological studies by Braak and colleagues raised the idea that pre-motor Parkinson’s may start in the intestines. Recently, several researchers observed alpha synuclein containing Lewy bodies in the gut of people with Parkinson’s.

Currently, the only Food and Drug Administration (FDA) approved drug for gastric motility issues is metoclopramide (Reglan). Metoclopramide blocks dopamine and unfortunately makes Parkinson’s symptoms worse. We tell Parkinson’s patients to avoid metoclopramide. Another alternative is domperidone (Motilium). However, domperidone is not FDA approved or available in the U.S. It blocks dopamine, but does not enter the brain and is considered safe for people with Parkinson’s. Domperidone is available in most countries.

Another researcher, Marrinan and colleagues, recently published a randomized double-blind placebo controlled trial (this type of trial is known as the “gold standard” of clinical research) of a new gastric promotility medication called camicinal (GSK962040). Camicinal works in the gut as a motilin agonist (a drug that attaches to the same receptor as a natural chemical and causes the same effect).

Motilin is a hormone that stimulates the intestines. It is produced from cells in the small intestine. Motilin drugs stimulate the motilin receptor and lead to release of the hormone.

Researchers recently hypothesized that the new medication camicinal could improve delayed stomach emptying and help the body absorb PD medications. Thirty-eight people with Parkinson’s enrolled in the study. A randomized group received 50 mg of camicinal each day, while others received a placebo. The study was conducted over seven to nine days. The study found that medication “off” time was improved by more than two hours in the camicinal group that also experienced faster absorption. When compared to the placebo group, the camicinal group also saw an improvement according to the MDS-UPDRS (a scale used to measure the multiple aspects of PD).

Though this study was small and of short duration, its results highlight the potential for a new approach to gastrointestinal issues common in Parkinson’s. Camicinal has recently completed a trial for diabetic gastroparesis (ClinicalTrials.gov) and the results should help inform the research for people with Parkinson’s who have similar issues.

Other gastrointestinal therapies that people with Parkinson’s should keep an eye on include the 5-HT4 receptor agonists (e.g. velusetrag) and ghrelin agonists (e.g. relamorelin). Please keep in mind that camicinal is not FDA approved. However, we should remain hopeful that a larger and more in-depth study of camicinal (and similar compounds) could potentially bring great benefit to the Parkinson’s community.

Selected Reference:

Dr. Michael S. Okun

Marrinan SL, Otiker T, Vasist LS, Gibson RA, Sarai BK, Barton ME, Richards DB, Hellström PM, Nyholm D, Dukes GE, Burn DJ. A randomized, double-blind, placebo-controlled trial of camicinal in Parkinson's disease. Mov Disord. 2017 Dec 26. doi: 10.1002/mds.27259. [Epub ahead of print] PubMed PMID: 29278279.

Barboza JL, Okun MS, Moshiree B. The treatment of gastroparesis, constipation and small intestinal bacterial overgrowth syndrome in patients with Parkinson's disease. Expert Opin Pharmacother. 2015;16(16):2449-64. doi: 10.1517/14656566.2015.1086747. Epub 2015 Sep 16. Review. PubMed PMID: 26374094.

You can find out more about our National Medical Director Dr. Michael S. Okun by visiting the Center of Excellence University of Florida Health Center for Movement Disorders and Neurorestoration. Dr. Okun is also the author of the Amazon #1 Parkinson's Best Seller 10 Secrets to a Happier Life.

Raise Awareness

Center of Excellence Series: Rush University Medical Center Provides Critically Needed Parkinson’s Mental Health Program

Taking blood pressure

Most people associate Parkinson’s disease (PD) with tremors, a motor symptom. However, non-motor symptoms are common and can be more troublesome and disabling than motor symptoms. They can include cognitive changes, mood and sleep disorders, autonomic symptoms or weight loss. Rush University Medical Center, a Parkinson’s Foundation Center of Excellence, is not only on the front lines of PD-related cognitive research, but is actively hosting life-changing programs targeting these non-motor, and in particular, cognitive and behavioral symptoms.

Jennifer G. Goldman, MD, MS, is unique in the Parkinson’s field. She is a fellowship-trained movement disorder specialist with additional background in behavioral neurology and neuropsychiatry — an uncommon combination that provides her with a unique skillset to treat Parkinson’s non-motor symptoms.

RUSH

In between seeing patients, Dr. Goldman conducts research studies to better understand what causes a person with PD to experience neuropsychiatric symptoms (such as memory loss or cognitive changes, anxiety, depression, psychosis and hallucinations). She utilizes MRI (magnetic resonance imaging) brain scans and clinical assessments to evaluate cognitive and behavioral effects. More broadly, Dr. Goldman’s research tries to find the mechanisms of the brain and biomarkers (measurable substances that attribute to the onset and progression of a disease) that contribute to Parkinson’s-related non-motor symptoms.

Research, like Dr. Goldman’s, plays a vital role in developing treatments to stop non-motor issues from progressing. “We have very good medicines, therapies and surgical treatments that can help motor symptoms, but we are far behind on being able to treat or stop any of the neuropsychiatric symptoms — particularly cognitive decline and dementia — that take a toll on quality of life for patients and care partners,” said Dr. Goldman.

Dr. Goldman and her team set out to do more. Funded through a Parkinson’s Foundation Moving Day grant, the center created a dedicated program to address the unmet needs of people with PD experiencing cognitive, behavioral and emotional symptoms of Parkinson’s.

“The Integrated Cognitive Behavioral Movement Disorder Program” includes a multidisciplinary and comprehensive clinic and offers an educational series to support people with PD and care partners who need to treat and cope with non-motor symptoms.

Roughly nine million people living with Parkinson’s in the world are not being treated by a specialist.  Through funding, the Parkinson’s Foundation supports Rush’s efforts to host an open clinic to reach as many people as possible who are most likely not receiving expert care.

While addressing cognitive and behavioral issues can be daunting for patient and doctor alike, Dr. Goldman knows that there is still a social stigma attached to mental health. She regularly sees patients who are afraid to be labeled as having a cognitive or behavioral issue in addition to their PD. Terms like dementia and psychosis can be incredibly scary for anyone coping with Parkinson’s.

“It is a well-known problem that many doctors do not have enough time during an appointment to truly explain and talk through mental health issues,”

-Dr. Goldman

This is one reason the Rush team welcomes the conversation and helps people advocate for their mental health through their clinic.

A Day at the Integrated Cognitive Behavioral Movement Disorder Clinic

On clinic day, people with any stage of Parkinson’s, from anywhere in the country are seen by the center team. Upon arriving they are:

  1. Provided a comprehensive assessment by the center’s allied health team, which includes a physical therapist, occupational therapist, speech therapist, nutritionist, neuropsychologist, social worker, nurse, physician assistant and movement disorder specialist.
  2. Together, the team determines a personalized treatment strategy, keeping in mind the patient’s symptoms — motor and non-motor.
  3. If the patient lives in another city or state, the team will provide their assessment and treatment recommendation and refer the patient to a clinic and doctor closer to their home for future visits. If a patient is referred to the clinic and can commute for care, they can choose to receive care at Rush moving forward.  

Care doesn’t stop with the patient. “One of our program goals is to also spend time with the care partner,” Dr. Goldman said. “Most of the time, clinic appointments are not really about the care partner, but we often find that caregivers need to be addressed as well.”

To educate and aid even more people the clinic hosted an educational series. Dr. Goldman, the clinic team and invited guest speakers addressed a different neuropsychiatric topic, such as depression and hallucinations, in each of the eight sessions held. Fifty-two attendees attended the first session in July 2017. After the presentation, the session transitions into moderated support groups — one for people with PD and one for caregivers. Each can share stories about the topic addressed and ask the speakers questions. Participants are encouraged to take available resources, such as Parkinson’s Foundation books. Future series will address apathy, depression and anxiety and will include an online webinar component with virtual chats to allow people to participate from home.

“We felt there was a great need to have a forum where we could educate the Parkinson’s community about the neuropsychiatric symptoms because there is a lot of misinformation, fear and stigma surrounding these issues,” said Dr. Goldman.

Between the clinic and its sessions, the center hopes to see even more people with PD advocate for themselves. The dream remains to ultimately prevent Parkinson’s non-motor symptoms altogether, but for now, programs like the Rush Cognitive Behavioral clinic exist to make life better for people with Parkinson’s, on a physical and emotional level.

The Rush University Medical Center is located in Chicago, IL. Learn more about your nearest Center of Excellence.

Raise Awareness

Hallucinations and Delusions in Parkinson's Disease

Lady holding her head

It might be surprising to learn that 20-40% of people with Parkinson’s disease (PD) will experience visual hallucinations. While typically not a symptom of PD itself, they can develop due to a change in PD medication or as a symptom of an unrelated infection or illness. Knowing the signs of hallucinations and how to manage them is important.   

Hallucinations and other more severe perceptual changes can be distressing to the family — often more so than to the person experiencing them. For the well-being of people with PD and caregivers, it is important to identify hallucinations as early as possible and take steps to reduce them.

The following article is based on a Parkinson’s Foundation Expert Briefing about hallucinations and delusions in Parkinson’s hosted by Christopher G. Goetz, MD, Professor of Neurological Sciences,  Professor of Pharmacology at Rush University Medical Center, a Parkinson’s Foundation Center of Excellence.

Hallucinations 101

Doctors often refer to hallucinations and other changes in perception as psychosis. While not every person with PD will develop psychosis or its symptoms, it can still be a frightening thought. 

hallucination is a false perception. A person sees, hears, feels or perceives something that is not there. Among people with PD, visual hallucinations are most common, often of people or animals. They tend to be vivid and to happen at night. Usually they are not frightening and can become familiar. For example, a person might regularly hallucinate a puppy with a red collar.

delusion is a fixed conviction that something is real when it is not. For example, Tom, who has PD and was previously a car dealer, was convinced that his house was a car dealership.

Paranoia is a delusion dominated by suspiciousness, fear and concern about safety. For example, a person may falsely accuse their partner of infidelity.

Among people with PD, these perceptual changes develop on a spectrum:

  • Slight: illusions, misperceptions or hallucinations with no form, like a movement in the shadows. The person recognizes they are not real.
  • Mild: formed hallucinations, where the person sees a child or small animal, like a cat. It looks real, but the person knows it is not.
  • Moderate: formed hallucinations, such as a brother or person. There is a loss of insight and the person thinks the hallucination is real.
  • Severe: these can be negative. For example, believing a stranger is trying to harm them or a loved one. Delusions can also be pleasant — the person might think they live in a garden or all-inclusive hotel.  

Given this range, delusions can easily infringe on quality of life. While experiencing a hallucination or delusion it is common for the person experiencing it to feel calm, but for family members to feel distressed.

A progression of these symptoms is consistent in Parkinson’s. It would be rare for a person with Parkinson’s to have delusions without hallucinations. However, if a person suddenly has delusions, an infection or other medical issue is likely the cause, and it’s important to see a doctor right away.

I'm experiencing hallucinations: what now?

Research has shown that for many people with PD who have them, hallucinations begin after a change in medication, more specifically, an increase in levodopa (also known as Sinemet). Additional factors make a person more likely to experience hallucinations when medications are changed, such as other cognitive problems or memory issues, depression and sleep problems.

Dementia is a term used to describe cognitive changes — whether in memory, judgment or attention — that interfere with daily life. It also increases the risk of hallucinations and delusions when PD medications are changed.

One thing that does not affect the risk of hallucinations is your regular dose of levodopa. Rather, studies show that a change in dose — an increase in a stable dose — can set off hallucinations.

Tip: Experiencing a hallucination does not mean you are “going crazy.” Many people recognize that their hallucinations are not real. Do not react or engage these visions or sounds — dismiss them. Bring up the topic with your doctor immediately.

People with Parkinson’s often ask, “Is my hallucination a one-time event?” A study sought to answer this by tracking 89 people with PD for 10 years. At the beginning, about a third experienced hallucinations. Over time, more participants experienced them. The study found that most people with PD who hallucinate will most likely continue to do so, and over time hallucinations can worsen. After 10 years, most of the participants experienced hallucinations.

Treatment Options

There are ways to manage hallucinations or delusions:

  1. Rule out medical illness as a cause. The most common causes for sudden confusion and agitation are urinary tract infection or pneumonia. Did you recently start a new non-PD medication, like a bladder medicine or narcotic?
  2. Review your prescriptions. Have they been filled correctly? Double check your dosages and pills.
  3. Visit your regular doctor right away. If possible, try to avoid the emergency room. Your neurologist or PD doctor can offer medical approaches to reducing hallucinations. Under your doctor’s supervision, reducing the dose of your primary Parkinson’s medication may make hallucinations more manageable. However, it can be a trade-off — reducing medications can cause unsteady walking or an increase in tremor.
  4. Talk to your doctor about eliminating nonessential medicines. Many medications complement the benefits of levodopa, but may not be necessary. These include anticholinergics (trihexyphenidyl, biperiden, Benadryl), amantadine and monoamine oxidase-B inhibitors (selegiline, rasagiline).
  5. Your doctor may prescribe medication that targets hallucinations. Medications like clozapine or one that promote sleep can help you manage hallucinations. Therapies for dementia may improve cognition and the ability to cope with hallucinations. Talk with your doctor to find a treatment plan that works for you.

Tips for Caregivers

When a person with Parkinson’s develops hallucinations, immediately work with your physician and follow strategies at home to make the hallucinations manageable. Recognizing hallucinations — and dismissing them — are important ways of coping.

Hallucinations and psychosis are the aspects of PD that make at-home care most difficult. They are demoralizing, can disrupt sleep and fragment home life for the family. More than movement difficulties or any other aspect of PD, caregivers find hallucinations and delusions too much to cope with. 

Caring for someone who experiences hallucinations and delusions is a difficult job. Learn more in our book Psychosis: A Mind Guide to Parkinson’s Disease.

Call the Parkinson’s Foundation free Helpline at 1-800-4PD-INFO (1-800-473-4636) to talk to Helpline specialist.

Tips for Daily Living

Listen to Our Top 10 Podcast Episodes Now

Man on a walk looking at his phone with headphones on

Our podcast, Substantial Matters: Life and Science of Parkinson’s, features more than 35 episodes about the latest PD treatments, research and therapies that help make life better for people with Parkinson’s. Catch up with our 10 most popular episodes:

1. How to Manage Parkinson’s “Off” Time

Parkinson’s symptoms can get better and worse throughout the day. These so-called “on-off” fluctuations (or motor fluctuations) and dyskinesias can be troubling, but a movement disorder specialist can help. Find out what causes these changes and how your doctor can help you manage them.
Listen Now

2. The Benefits of Exercise for People with Parkinson’s

Regular exercise is essential for people with Parkinson's. This podcast describes what is known about exercise and PD and what is being researched, as well as tips on overcoming exercise barriers.
Listen Now

3. Early Warning Signs of Parkinson’s

In the debut episode of Substantial Matters, Parkinson’s Foundation national medical director Michael S. Okun, MD, talks about the early signs of Parkinson's and gives advice on what to do following a diagnosis.
Listen Now

4. The Importance of Good Nutrition for People with Parkinson’s

Nutrition plays an integral role when it comes to good Parkinson's care. Find out which PD symptoms are impacted by diet, how to optimize the effects of medication and how to get adequate nutrition.
Listen Now

5. The Keys to Driving with Parkinson’s

Age, along with Parkinson’s, can affect critical driving skills. However, giving up the keys is an emotionally charged issue. This podcast examines DriveWise, a program that involves a multidisciplinary team of health professionals who assess the skills and mental abilities needed to drive safely.
Listen Now

6. New Levodopa Delivery Methods for Parkinson’s

While levodopa is the most effective treatment for Parkinson’s, some people experience “off” periods or dyskinesias. Learn about the new delivery methods that promise to help. Learn about levodopa infusions, skin patches and long-release pills that are in development.
Listen Now

7. Genetics as a Guide to Neuroprotection in Parkinson’s Disease

For decades medication has been used to control PD symptoms, but researchers have yet to find a way to protect neurons (brain cells) to slow down or stop disease progression. Learn how modern genetics can be a guide to developing new drugs.
Listen Now

8. Young-Onset Parkinson’s 101

A diagnosis of young-onset Parkinson’s disease brings special challenges. For instance, deciding when to disclose the diagnosis at work and to children can be difficult while you are still coping with the news. Learn techniques for dealing with these challenges.
Listen Now

9. Medical Marijuana: Going Green for PD?

More people are exploring medical marijuana, also called cannabis, to help treat various chronic health conditions, including Parkinson’s. However, much is still unknown about its use for medical purposes. Learn the latest developments in this podcast.
Listen Now

10. Autonomic Problems

To avoid embarrassment, people with PD often avoid telling their physicians about PD-related urinary symptoms, sleep disturbances, sexual and intimacy matters and many other issues. This podcast focuses on these topics and how some can have easy solutions.
Listen Now

 

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Science News

Inject, Cool Tech and Keto Effect

Parkinson's Foundation Science News blogs

All Science News articles summarize a research study and are not an official opinion, endorsement or position of the Parkinson’s Foundation.

Every year, the Movement Disorder Society (MDS) hosts an international congress where the top minds in the field share ideas and the latest in research. The 2018 congress took place this October in Hong Kong, China, where we found three particularly promising new Parkinson’s disease (PD) studies that not only provide hope and direction for the future, but also a new avenue you may want to explore with your healthcare provider, right now.

Inject

People tend to think of Parkinson’s as an overall body movement disorder. However, it’s not uncommon for PD to negatively impact the facial muscles, mouth, throat and even vocal cords — which can make it difficult to chew, eat, swallow, and speak with audible volume. A medical procedure where a collagen gel is injected directly into the vocal chords may help. Called vocal fold augmentation, the gel filler (specifically, carboxymethylcellulose) provides a thicker, more resilient cushion for the vocal cords. This is not a new procedure being tested, it’s a treatment that has been used for many years to treat vocal cord atrophy, just not in people with PD.

Inspired by a patient who told his otolaryngologist that he wished something could just be injected in his throat, a clinical trial began using the injected gel in 29 people with PD. Researchers measured results in: overall severity, roughness, breathiness, strain, pitch and loudness. They also measured glottis closure timing (essential in airway protection, so food won’t go down the wrong pipe), and supraglottic constrictions, which involves throat constriction above the vocal chords.

In the one-month follow-up, statistically significant improvements were achieved in overall severity, breathiness, loudness and glottic closure time. People’s eating and swallowing ability remained the same. According to the study authors, the positive effects of the gel will wear off in about three months; thereby, providing proof that the injection worked. If that is indeed the case, their next step involves injecting a calcium hydroxyapatite paste, which the researchers suggest could last up to 18 months – at which time, patients may receive another injection.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about speech, swallowing now or by calling our free Helpline at 1-800-4PD-INFO (473-4636).

Cool Tech

Innovations in personal, portable technology to improve Parkinson’s care, health outcomes and overall management for diseases such as diabetes, epilepsy and asthma, have become a major focus of research. And now, researchers may have identified a technology to help people with certain aspects of PD. Called a Parkinson's Kinetigraph (PKG), this wearable device contains an accelerometer that measures and records information on motor patterns, impulsiveness, periods of sleep and medication response. In a recent study involving 70 people with PD, doctors were asked to provide what their management plan for each person would be, before and after receiving the PKG results.

The clinical findings and the PKG were essentially the same for 80% of participants. However, utilizing the additional PKG data resulted in 24 of the PD participants (34%) receiving changes in their clinical management, including altering their medication dosing, as well as recommending advanced therapies such as apomorphine or deep brain stimulation. For two participants, based on their poor response to therapy recorded by the PKG, their Parkinson's diagnosis was questioned. As to whether or not these PKG-inspired clinical management changes will lead to longer-term improvements in people’s health outcomes and/or quality of life has yet to be determined. However, if it does, this technology could be life-changing.

Learn More

Learn more about wearable technology by visiting Assistive Technology & Devices.

Keto Effect

We all know that following a healthy diet is essential for overall health. But which diet is best for people with Parkinson’s? A recent pilot study sought to compare a low fat, high carbohydrate diet (which is thought to increase dopamine levels in the brain), with the high fat, low carbohydrate ketogenic diet (or ‘keto’ as it’s usually referred) — which may help with diminished mitochondrial energy metabolism. A total of 47 study participants with PD were randomly assigned to follow one of the two diets over an eight-week period. The total calories were identical, as was the total protein content — because protein interferes with levodopa absorption.

Overall, following both diets resulted in improvements in movement and non-movement symptoms. However, the group following the keto diet experienced a greater improvement in non-motor symptoms, as compared to the low fat/high carb diet (41% vs 11%, respectively), including experiencing less urinary problems, pain, fatigue, daytime sleepiness and cognitive impairment. This is particularly significant because non-motor symptoms are less responsive to the medication levodopa. In terms of adverse effects, the most common for those following the low fat/high carb diet was being hungry; and for the keto diet, some experienced a transient increase in PD tremor/rigidity. Both groups also lost weight. Bear in mind that this trial was only 2-months long and there was also no control, or normal diet for comparison. Nonetheless, these study findings suggesting the keto diet may be useful for non-motor symptoms are encouraging.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more by reading Diet & Nutrition or listening to our podcast episode: The Importance of Good Nutrition for People with Parkinson’s.

Have specific questions about nutrition and diet? Call our free Helpline at 1-800-4PD-INFO (473-4636).

Raise Awareness

How to Spot the Early Signs of Parkinson's

Lady got dizzy and fell on her living room floor and holding her forehead

It can be hard to tell if you or a loved one has Parkinson's disease (PD).

The next time you visit family, we want to make sure you can spot the early signs of Parkinson's. With early detection, treatment and expert care, many people live longer, productive lives with Parkinson’s.  In addition to tremors, there are other early signs you can observe.

Infographic with 10 early signs of Parkinson's disease: tremor, trouble walking, loss of smell, trouble sleeping, small handwriting, soft voice, constipation, masked face, stooped posture and dizziness

No single one of these signs means that you should worry, but if you have more than one sign you should consider making an appointment to talk to your doctor.

Visit Parkinson.org/10signs to learn more

Tips for Daily Living

DIY: Living Better with Parkinson's

couple hugging outside

Managing and living with Parkinson’s disease (PD) is a challenge. Every member of the Parkinson’s Foundation People with Parkinson's Advisory Council (PPAC) knows this first-hand and set out to help the PD community by launching a series of articles where people can share the ways they modify and use every-day items to help manage PD symptoms.

Do It Yourself (DIY): Living Better with Parkinson’s will regularly highlight the creative, PD-tailored, DIY ways people with Parkinson’s and care partners make daily tasks easier.

The views and opinions expressed in this blog, along with listed products, are those of the authors and are not endorsed or reflect the official policy or position of the Parkinson’s Foundation.

Below we list the tools people have created themselves or purchased to live better with PD:

If it is difficult to hold a pen or pencil, go to a home improvement store and buy foam pipe wrap (used to insulate pipes). The tube splits open and the pencil fits inside.

- Mary, PPAC member

If you need help falling asleep, try listening to a boring book or meditation app, like Calm. It offers daily sleep stories ― the best so far is “Once upon a GDPR,” where Peter Jefferson reads a law document for 34 minutes.

- Gretchen, PPAC member

My Fitbit is very helpful in monitoring my activity level and in reminding me to take my meds. I sometimes feel like I’ve walked for miles, but the Fitbit tells me I’ve barely moved all day. It is a good reality check.

- Andree, PPAC member

blue tape by a toilet

Getting into the right position to sit down safely on the toilet requires walking, turning, backing up and sitting down. We use blue tape to delineate the exact space my dad needs to stand in to sit down safely.

- Dana, PPAC member

Use voice to text apps (I use Dragon) to help with writing on the computer.

- Andree, PPAC member

Use the alarm on your cell phone to set your daily medication alarms.

- Richard

jogging with a jogging stroller

I use a jogging baby stroller with big wheels when I’m walking on the gravel roads by our home. I weighted it with a gym bag and it has really helped my walking. I can walk two miles using this stroller and I’m not so exhausted afterwards.

-Karen and Rob, PPAC member

For toe dystonia you can find toe separators in all shapes and materials. They help straighten and relax my toes. These separators aren’t made specifically for people with Parkinson’s, but are very helpful. In a pinch, I twist up a handkerchief and wind it between my toes.

- Gretchen, PPAC member

The U-Step 2 walker with a laser light that comes on with switch helps with freezing. It is pricey, but with Medicare it cost $70. It also has a metronome to help give rhythm for help with walking. It doesn’t handle steps or gravel well but has a seat with storage.

- Rob

For constipation, try the Squatty Potty. It really works! It elevates the feet when on the toilet, which straightens out the colon and makes it much easier to go. You can also multi-task at the same time and polish your toenails.

- Smitty

I found a cup with a storage area for pills inside. It is a handy way to take my medication on-the-go.

- Trudy

Get a handicapped placard for your car. I used to think I didn’t really need it. But I have found the less energy I have to expend at the beginning of running an errand the more I have in reserve at the end.

- Andree, PPAC member

Place a 1/2 foam roller flat on the bed. Lying on it releases the spine and makes it more flexible. It’s also good for colon therapy.

- Jean

My worst time of day is morning. I put blue masking tape on the floor to help me with my walking, especially those first steps in the morning.

- Eduardo

I use hot packs on my eyes in dry climates, which have really helped my dry eyes.

- Sandy

It was very hard to get my walking shoes on until I discovered sneakers that zipper in the back. They are much easier to get on and off, although the zipper can be tricky. I use Flyease by Nike.

- Orlando

To keep his muscles strong, my husband uses the eTrainer-ER Mini. It exercises your arms and legs and can be used from a chair.

- Susan

For more information and tips for daily living visit Parkinson.org/Blog or call our Helpline at 1-800-4PD-INFO (1-800-473-4636).

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