Raise Awareness

Advocacy Is All in the Family for the Hotts

Grandmother dancing with granddaughter

In this blog, Angie Hott discusses her work as a Parkinson’s advocate and her participation in the upcoming 2018 Parkinson’s Policy Forum, co-sponsored this year by the Parkinson’s Foundation and The Michael J. Fox Foundation. The event will take place March 19 to 21 in Washington, D.C. You can view a live stream of the Forum’s educational panels on March 19 and 20 by visiting the Parkinson's Foundation's Facebook page.

Forum attendees will conduct a full day of meetings on Capitol Hill on Wednesday, March 21. At the same time, Parkinson’s advocates across the country will take part in Parkinson’s Advocacy Day. Be sure to check your email and visit our Facebook page on March 21 for instructions on how to easily email your lawmakers and make your voice heard.

Parkinson's Policy Forum - Angie and Dan Hott

The 2018 Parkinson’s Policy Forum is just around the corner, and advocates from across the country will travel to Washington, D.C. to meet with their members of Congress and educate them on the ways public policy impacts Parkinson’s disease (PD) research and care.

Two of those advocates are Angie Hott and her husband Dan.

Diagnosed in 2008 when he was 50, Dan Hott is an Air Force veteran who, with Angie, has four children — Caity (28), Violet (18), Isaac (14) and Levi (13) — and lives in Berkeley Springs, West Virginia. For the Hotts, advocacy and innovation have become cornerstones of their family life.

“When one person in the family has Parkinson’s disease we all have Parkinson’s disease, in a sense,” said Angie. “We have to use our voices for those who need us, and for the greater purpose of finding a cure,” she added.

In Angie’s public school STEAM (science, technology, engineering, the arts and mathematics) and character education work, she talks about Parkinson’s disease and encourages the kids to pursue a career in science or medicine. In fact, earlier this year, when she was teaching that it is positive to be curious and learn new things, she challenged students to “create something new that will help others.” A group of 8-year-old students she was working with used their engineering know-how and a big box of Legos to devise ways Dan could be more mobile. Science and medicine is a big interest at home, too, as the Hotts’ daughter Violet will attend Columbia University in the fall to study neuroscience.

“We will never be able to financially offer much, but we sure can encourage the younger generation to care and to pursue work to better understand the brain and find a cure for PD,” said Angie.

At this year’s Parkinson’s Policy Forum, Dan and Angie Hott look forward to meeting other advocates, sharing their story, and encouraging their members of Congress to support policies that further research funding and increase access to care for people living with Parkinson’s.

“Last year was our first Forum and I’m really looking forward to this year — I think I’ll be less nervous and better equipped to talk about our family and what Parkinson’s means to us,” she added.

Angie’s advocacy efforts aren’t limited to the Forum in Washington, D.C. She and her extended family and friends regularly reach out to their senators and representative on issues that matter to the PD community. 

The Hotts also pursue state and local public policy work. In February, Angie wrote an email encouraging West Virginia Governor Jim Justice to declare April 2018 Parkinson’s Awareness Month, and she was successful in her efforts. Governor Justice will issue the proclamation, which will be another opportunity in April for the Hotts to raise awareness about PD and why our voices matter.

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.

Science News

Metabolic Syndrome & Increased Parkinson’s Disease Risk

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’s.

Metabolic Syndrome (MetS) is a group of conditions that occur together that result in insulin resistance and increase the risk of heart disease, stroke and diabetes. According to a new study, MetS may be associated with Parkinson’s disease (PD).

While MetS can be prevented, controlled, treated and even reversed. It is not always easy to treat, since it is a cluster of five interrelated risk factors:

  1. high blood pressure
  2. high blood sugar (fasting glucose)
  3. high levels of triglycerides (a type of fat in your blood)
  4. low levels of HDL (the “good” cholesterol)
  5. a large waist circumference (over 40 inches for men and over 35 inches for women)

MetS is associated with developing a number of diseases, including heart disease, stroke, and type-2 diabetes. It is also associated with an increased all-cause mortality risk (meaning, dying from any cause). Additionally, there’s mounting evidence suggesting that oxidative stress is a major component of MetS-associated diseases – and Parkinson’s disease also has been shown to have a strong oxidative stress component. Thus, there may be shared disease pathways that could be targeted for future treatments and interventions.

A recently published study in the journal, PLOS Medicine, titled, "Metabolic syndrome and risk of Parkinson disease: A nationwide cohort study" (Nam et al., 2018), approached this important investigation in a big way. Spanning a 5-year period (2009 through 2012), the research scientists analyzed the health check-up data of nearly the entire South Korean population who met the study criteria, e.g., study individuals had to be 40 years of age or older and have no prior diagnosis of PD.

Ultimately, 8,215,180 men and 8,948,380 women (for a total of 17,163,560 people) were part of the study analyses. Demographics and lifestyle data were gathered through self-reporting questionnaires, including comorbidities (hypertension, diabetes mellitus, dyslipidemia, ischemic heart disease and stroke), as well as smoking status, alcohol consumption, income, age, gender, and of course, their specific test results for all 5 MetS risk factors. Of note, study participants were diagnosed as having MetS if they had 3 or more of the 5 risk factors. 

Results

  • At baseline, 5,848,508 of the individuals (34.1% of the total study population) were diagnosed as having MetS.
  • Upon follow-up, 44,205 individuals were diagnosed with PD.
  • The rate of PD incidence was 2.2 times higher in those with MetS compared to those who didn’t have MetS.
  • Overall, individuals who had MetS had a 24 percent higher risk of PD than those without MetS.
  • Having even just one of the 5 MetS risk factors increased an individual’s PD risk; and, that PD risk increased with each additional risk factor.
    • Individuals with 3 MetS risk factors were at 31% higher risk of PD, compared to those without any risk factors.
    • Individuals with all 5 MetS risk factors were at 66% higher risk, compared to those without any risk factors.
  • Individuals 65 years and older were all shown to be at increased risk for PD, with the greatest PD risk for those with MetS; this association was particularly prominent in women.
  • Even after adjusting for potential confounders (age, sex, smoking, alcohol consumption, physical activity, income, body mass index, kidney function, and history of stroke), individuals with MetS had an increased risk of PD compared to those without MetS. 

What Does This Mean?

This study suggests that not only does having MetS risk factors increase your risk for PD, but also, the more risk factors you have, the more likely you are to develop PD. That being said, the jury is still out as to what actually causes MetS in the first place.

Many of the risk factors of metabolic syndrome are associated with insulin resistance (IR). More and more studies suggest that IR negatively impacts dopamine functioning in the brain. And PD symptoms – including tremors, stiffness, and slowness of movement – are caused by a lack of dopamine in the brain;  hence, why a drug that replenishes the brain's reduced supply of dopamine, i.e.,  levodopa, helps diminish those symptoms.

Perhaps the biggest take-away is three-fold:

  1. Improving our understanding of the relationship between the components of MetS and PD could help us better understand the pathophysiology that links the two.
  2. Adopting a healthier lifestyle (better food choices, more exercise and medications, if prescribed) is a well-documented path to halt, and even reverse MetS – which, according to this study, may also reduce your risk for developing PD.
  3. Being able to identify people at increased risk for developing PD is vital information to have, as mounting an early intervention strategy as described above could potentially make a big difference. 

Learn More

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

Raise Awareness

What’s Hot in PD? Should I Get an Appendectomy to Prevent Parkinson’s Disease?

Talking to a medical professional

In this week’s issue of Science Translational Medicine, Bryan Killinger, PhD, and colleagues examined the question, “Will removing my appendix impact my risk of later developing Parkinson’s disease (PD)?”

Interestingly, several recent studies have attempted to answer this question. With the emerging evidence supporting that a gut-brain connection and interaction may play a potential role in Parkinson’s, this subject is a timely one.

Dr. Killinger and his team examined two very large sets of data, totaling 1.6 million people. They further studied data from people who had their appendix removed via a surgical operation called an appendectomy. Those who underwent an appendectomy before the onset of PD had a reduced risk of Parkinson’s.

Interestingly, people who live in rural areas had an even lower Parkinson’s risk after undergoing an appendectomy. When researchers find a connection to rural areas, it increases the chances that environmental influences (e.g. pesticides) may have played a role. There have been many theories about how the gastrointestinal system may influence Parkinson’s risk and progression, however we still do not know how exactly they are connected.

In their study, Dr. Killinger and his team also examined small samples of human appendixes and found that the Parkinson’s protein (alpha-synuclein) was present. The researchers then used a special technique on the human appendix tissue to show how it could be pathological in the disease process. Dr. Killinger proposes the idea that the human appendix contains a bad form of alpha-synuclein and the contents of the appendix may potentially impact the risk of Parkinson’s.

However, several studies contradict these findings. They have collectively shown no change or only a slight change in PD risk after undergoing an appendectomy. In 2018, Palacios and his team found no association of appendectomy and Parkinson’s when studying two large groups of participants. In 2017 and 2016, researchers Yilmaz and Marras also reported no association. In 2016, Svensson actually reported an increased risk of Parkinson’s associated with appendectomy. Finally, Mendez, similar to the current study, reported a beneficial effect of appendectomy, but only observed this in older people with PD.

When it comes to the medical community, proving that something works is best achieved when multiple well-designed studies can replicate a finding. Based on what we currently know, alpha-synuclein can be found in the appendix, but we cannot recommend a surgical appendectomy to prevent or delay Parkinson’s disease in people who are more at-risk (like testing positive for a Parkinson’s gene) and not yet diagnosed.

So where does this leave people with Parkinson’s? The bottom line is that if you are currently living with Parkinson’s there is no evidence to suggest that removal of the appendix will provide any benefit.

Selected References

Killinger BA, Madaj Z, Sikora JW, Rey N, Haas AJ, Vepa Y, Lindqvist D, Chen H, Thomas PM, Brundin P, Brundin L, Labrie V. The vermiform appendix impacts the risk of developing Parkinson's disease. Sci Transl Med. 2018 Oct 31;10(465). pii: eaar5280. doi: 10.1126/scitranslmed.aar5280. PubMed PMID: 30381408.

Mendes A, Gonçalves A, Vila-Chã N, Moreira I, Fernandes J, Damásio J, Teixeira-Pinto A, Taipa R, Lima AB, Cavaco S. Appendectomy may delay Parkinson's disease Onset. Mov Disord. 2015 Sep;30(10):1404-7. doi: 10.1002/mds.26311. Epub 2015 Jul 30. PubMed PMID: 26228745.

Marras C, Lang AE, Austin PC, Lau C, Urbach DR. Appendectomy in mid and later life and risk of Parkinson's disease: A population-based study. Mov Disord. 2016 Aug;31(8):1243-7. doi: 10.1002/mds.26670. Epub 2016 May 31. PubMed PMID: 27241338.

Svensson E, Horváth-Puhó E, Stokholm MG, Sørensen HT, Henderson VW, Borghammer P. Appendectomy and risk of Parkinson's disease: A nationwide cohort study with more than 10 years of follow-up. Mov Disord. 2016 Dec;31(12):1918-1922. doi: 10.1002/mds.26761. Epub 2016 Sep 13. PubMed PMID: 27621223.

Yilmaz R, Bayram E, Ulukan Ç, Altınok MK, Akbostancı MC. Appendectomy History is not Related to Parkinson's Disease. J Parkinsons Dis. 2017;7(2):347-352. doi: 10.3233/JPD-171071. PubMed PMID: 28387683.

Dr. Michael S. Okun

Palacios N, Hughes KC, Cereda E, Schwarzschild MA, Ascherio A. Appendectomy and risk of Parkinson's disease in two large prospective cohorts of men and women. Mov Disord. 2018 Sep;33(9):1492-1496. doi: 10.1002/mds.109. Epub 2018 Sep 14. PubMed PMID: 30218460.

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.

Raise Awareness

Become a Parkinson’s Care Advocate: Join Our Aware in Care Ambassador Pilot Program

Woman on a laptop

When hospitalized, three out of every four people with Parkinson’s disease (PD) do not receive their medications on time. Most develop serious complications as a result. In 2011, the Parkinson’s Foundation launched Aware in Care to help people with Parkinson’s get the best care possible during a hospital stay, and it worked.

Surprisingly, 70% of hospital staff are still unaware of which medications worsen PD motor symptoms or are contraindicated (works against existing medication or makes Parkinson’s symptoms worse) for people with Parkinson’s, and only 25% of hospitals have a protocol in place to contact the patient’s doctor treating their PD upon admission.

The Aware in Care campaign aims to help everyone be better informed ― people with PD, care partners and family, healthcare providers and hospital staff. Since launch, the Parkinson’s Foundation has distributed more than 75,000 Aware in Care kits, providing people with Parkinson’s the tools they need to get the best care. 

Recently, the Parkinson’s Foundation conducted a survey of Aware in Care kit recipients to see how we can improve care for the PD community. More than 95% of responses rated the kit as useful, while almost 60% recommended it to others with Parkinson’s and 39% said they would recommend it.

Aware in Care hospital safety kit

“The Aware in Care kit is an excellent educational tool that supported my explanations for everyone that crossed my path from EMT to discharge, as none of them knew any Parkinson’s symptom except for shaking,” said a survey respondent.  

“Having the kit adds a level of confidence and a feeling of preparedness should the need arise to go to the hospital or evacuate in an emergency,” said another survey respondent.

Aware in Care kit survey responses also included:

  • 80% of kit users felt comfortable telling hospital staff about the importance of receiving medication on time, every time.
  • 52% of kit users said that they actually received medications on time, every time. (Statistically, only 25% of people with PD receive medications on time, every time when hospitalized.)  
  • 44% of kit users said that staff knew about the hospitalization risks for people with PD
  • 48% of kit users felt that hospital staff were willing to learn about Parkinson’s

Among the survey results, one thing was clear: the kits work, but they are not enough. “The kit is great, but hospital staff need to be educated about PD,” said a survey respondent.  

To better address this critical care situation, the Parkinson’s Foundation is excited to announce a new initiative: Aware in Care Ambassadors. We are looking for dedicated volunteers to help us launch this new pilot program to bring Aware in Care into more communities and hospitals around the country.

“We have these lifesaving kits that are helping tens of thousands of people with Parkinson’s, but it’s time we go further and tell our communities and hospitals about them through advocacy,” said Anne Wallis, Parkinson’s Foundation associate director of education.

Aware in Care Ambassadors will train and work together in their communities to educate others about Aware in Care kits and to help the Foundation lay the groundwork for making changes in their local hospitals.

If you or your loved one want to advocate for Parkinson’s or have had a negative hospital experience or a positive experience using the Aware in Care kit and want to get more involved, please apply to be part of the Parkinson's Foundation Aware in Care Ambassador Pilot Program.

Ambassadors will work directly with the Parkinson’s Foundation. We are looking to establish teams in up to four cities and ask that volunteers commit to 10 hours a month. With our help, you will share the Aware in Care kit with your local community and create connections in local hospitals to help change the culture and policies around Parkinson’s care. Together, we can make life better for people with Parkinson’s.

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).

Advancing Research

The Latest in Nutrition and Parkinson's Disease

Eating well can help you take control of your health. In fact, choosing to eat healthy foods can improve your Parkinson’s disease (PD) symptoms. And some research suggests that sound nutritional choices could have disease-modifying effects, meaning that they could potentially slow PD progression. Changing your eating habits can be a challenge, but there are many small adjustments you can make to your diet that will add up to big benefits. Learning about them is the first step.

The following article is based on the latest research and a Parkinson’s Foundation Expert Briefings about nutrition, hosted by John E. Duda, M.D., from Philadelphia VA Parkinson’s Disease Research, Education & Clinical Center (PADRECC).

Managing PD Symptoms with Diet

Research supports these strategies for managing the following PD symptoms and medication side effects:

Fluctuations. Some people who take levodopa (Sinemet) notice that their medication is less effective when taken with a high-protein meal (a meal including foods like meat, fish and eggs). To address this difficulty, your doctor may recommend taking levodopa 30 minutes before, or 60 minutes after, you eat. That’s because levodopa is absorbed into the digestive system by the same route as protein — when taken together, both compete to be absorbed into the body.

Even after adjusting medication timing, some people still have difficulty absorbing it. This can lead to fluctuations — the levodopa wears off too soon or you experience changes throughout the day between the medicine working well and not having any benefit at all.

A protein-redistribution diet is a popular solution for fluctuations. That means eating most of your daily protein at dinnertime — the last meal of the day — to minimize Sinemet interference during most of the rest of the day. In research studies, fluctuations improved in about 80 percent of people who made this dietary change. People who benefitted most were those who started the regimen early in the course of their PD, before fluctuations became severe.

Iron also can prevent your body from taking up levodopa medications. Do not take iron supplements or multivitamins with iron within two hours of Sinemet.

Daytime sleepinessStudies show that taking caffeine in two to four cups of coffee a day can improve daytime sleepiness.

Orthostatic hypotension is sustained low blood pressure and dizziness on standing. There are several ways to reduce this symptom:

  • Avoid large meals, as they divert blood to the digestive system.
  • Increase the amount of salt in your diet.
  • Reduce alcohol consumption.
  • Drink one and a half to two quarts a day of fluids (six to eight 8-ounce glasses, including water, coffee and other beverages). You can also use a tall cup that has lines to mark your progress and help you keep track throughout the day.

Constipation. If you have less than one bowel movement per day, try to:

  • Drink more fluids.
  • Consume more fiber, from fruits, vegetables, beans, whole grains, nuts and seeds. Aim for 30-40 grams of fiber per day. Choose foods that have five or more grams of fiber per serving.

Cognitive changes. Many studies have shown that the Mediterranean diet can lower the risk of cognitive impairment for everyone. This diet is rich in whole grains and vegetables. It also includes fish, as well as small servings of low-fat dairy and lean meat, and uses olive oil instead of butter.

Bone health. People with PD often have low blood levels of vitamin D, which is essential for strong bones and may also play a role in warding off depression and cognitive change. Make sure your doctor tests your vitamin D. It can be difficult to get enough vitamin D through diet. Your doctor may recommend supplements.

Malnourishment and weight loss. If your food tastes bland, you’ve probably lost some of your sense of smell — a common PD symptom. To make food more appealing, so that you feel like eating more, try seasoning it with herbs, spices and other flavors. If you or your loved one with PD has experienced significant weight loss, ask your doctor for a referral to a nutritionist. This member of your health care team can offer different strategies for maintaining a healthy weight depending on your age and PD symptoms.

Your Diet and the Microbiome

One of the big stories in medicine is the role of the gut microbiome (the bacteria and other microorganisms that live in the digestive system) in health and disease.

Several studies have found that people with PD have much lower levels of Prevotella species of bacteria — a type thought to be good for maintaining gut health. They also have higher levels of bacteria associated with inflammation, which can be harmful.

How does that relate to your diet? What you eat affects which bacteria can thrive in your digestive system. Studies have shown that eating a Mediterranean, or whole-food plant-based diet, creates an environment where Prevotella and other healthy bacteria can flourish. Fiber and other components of whole plant foods and sometimes referred to as ‘prebiotics’ because they feed the “good” bacteria in the gut, which may be beneficial for people with PD.

Can eating well alter the course of PD?

Scientists know a lot about the molecular changes that underlie Parkinson’s. You may have heard of alpha-synuclein, the protein that forms clumps in brain cells, oxidative stress, mitochondrial dysfunction, and inflammation. The search is intense for therapies that can stop or reverse these processes. Can nutrition or dietary choices do anything to change them or alter the course of PD?

Some laboratory and animal research suggest that diet could have an effect, especially plant-based foods like fruits, vegetables, legumes, nuts and seeds. Every plant-based food contains hundreds of chemicals called phytochemicals. These are not nutrients, but substances that may, alone or in combination, affect many of the processes thought to be involved in PD including oxidation, chronic inflammation, protein aggregation and mitochondrial dysfunction.

Phytochemicals have not been proven to change disease progression in people with PD, but neither is there typically any harm in eating a diet that includes whole, unprocessed plants. This diet has proven benefits for preventing heart and vascular disease and can reduce PD symptoms, like constipation and risk of cognitive change. 

The best way to increase anti-oxidants and anti-inflammatory compounds in your blood and brain is by eating plants — all the different parts of them. Choose fresh, or frozen whole foods and avoid boxed or canned foods as much as possible. There is no one food that is best — aim for variety every day. And be sure to include nuts and seeds. Sprinkling a tablespoon of ground flax seeds on other foods is a simple way to improve your diet.

Healthy Eating with PD

Eating a whole food, plant-based diet, often called a Mediterranean diet, can help you live well with PD. Eat what you need to eat to be happy — but also eat more of the food that is good for your health.

If you have Parkinson’s, every healthy lifestyle change can help. Choosing to eat well also leads to a feeling of empowerment that helps you in your daily life with PD. While it can be challenging to eat better, most people make minor diet changes gradually that become major changes over time. Always consult your physician before making major changes.

To learn more about nutrition and Parkinson’s, visit Parkinson.org/Nutrition.

Nutrition Q & A

Nutrition plays a key role in managing Parkinson’s symptoms. Below, we answer common nutrition questions with science-based answers:

Is there a recommended diet for people with PD?

Research suggests that eating a whole-food plant-based diet, rich in a variety of fresh fruits and vegetables and high in fiber, can help some PD symptoms.

Should I eat organic produce?

It is plausible, but not proven, that the pesticide residues on fruits and vegetables could affect PD. For advice on avoiding foods with pesticides, download the Environmental Working Group’s Shopper’s Guide to Pesticides in Produce.

Can supplements help PD?

People who test low may need vitamin D supplements. If you eat a completely plant-based, vegan diet, you will need vitamin B12 supplements. No supplements have been proven beneficial for PD. Tell your doctor if you are taking any supplements.

Are fava beans good for PD?

Fava beans contain levodopa, the active substance in many PD medications. Eating them as a supplement is an area that needs more research and has not been proven to help.  Avoid commercial preparations of fava bean extract as they are not regulated and may not contain the ingredients on the label.  

Should I give up gluten?

The vast majority of people can eat gluten without ill effects. It is a protein found in some whole grains, which are probably good for people with Parkinson’s for the fiber and other nutrients that have in them.

Are probiotics good for PD?

Probiotics do not contain the health-promoting gut bacteria that are missing in people with PD. However, some studies suggest that probiotics can be helpful for constipation in PD.

Science News

Aerobic Exercise Positively Alters Parkinson’s Brain

Parkinson's Foundation Science News blogs

Getting regular exercise is essential to managing Parkinson’s disease (PD). It is well established that exercise promotes aerobic conditioning, strength, balance, flexibility and mobility, which can substantially improve overall quality of life.

Multiple clinical trials have demonstrated that aerobic exercise in particular, can enhance cognitive functioning, such as learning, thinking, remembering and problem solving. Further, a 2019 PD clinical trial called Park-in-Shape, investigating the effectiveness of remotely supervised aerobic exercise (using a stationary bike) resulted in a reduction of PD movement symptoms.

We know brain heath and cardiovascular fitness are connected. What we don’t know is how and where in the brain aerobic exercise is enhancing cognitive functions and reducing motor symptoms for people with PD.

A study recently published in the Annals of Neurology, “Aerobic exercise alters brain function and structure in Parkinson’s disease: A randomized controlled trial” (Johansson et al., 2022) investigated how aerobic exercise may influence PD-related functional and structural changes in the brain. The study also explored the effects of aerobic exercise on the substantia nigra, which helps the brain produce with dopamine. Movement disorders specialist Bastiaan R. Bloem, MD, PhD, from Nijmegen Parkinson Center — a Parkinson’s Foundation Center of Excellence ­— is one of the study’s authors.

The study further drew upon the study authors’ previous Park-in-Shape research, which was a single-center, six-month trial of 130 sedentary people with PD, ages 30–75 years, who experienced mild symptoms, and were either unmedicated or on stable dopaminergic medication.

Half of the participants were randomly assigned to ride a stationary bike (equipped with gaming feature) at home for 30- to 40-minute sessions at 50 to 80 percent of their ideal target heart rate. The other half (the control group) were assigned to do 30 minutes of stretching, flexibility and relaxation exercises. Both groups exercised in their own homes three times per week for 30 to 45 minutes over six months. Both groups received a motivational app and remote supervision.

To assess potential progress, researchers used a rating scale that measures PD symptoms (called the Unified Parkinson’s Disease Rating Scale (MDS-UPDRS)). Participants were assessed at the beginning of the study and at the six-month follow-up to provide a snapshot of disease severity. Additionally, there was a subset from this trial (25 people from the bike group and 31 from the stretching group) who underwent:

  1. Functional MRIs to measure which parts of the brain are more active by measuring blood flow changes in the brain
  2. Resting state MRIs for anatomical structure comparisons
  3. Oculomotor (eye) movement cognitive control tests
Women exercising

Results

At the six-month follow-up:

  • The aerobic exercise group had a shift in balance of connectivity from the sensory motor region of the cortex (the outermost layer of the brain) to the putamen region of the brain. The balance in connectivity was shifted in favor of connections between sensory motor cortex to the front part of putamen instead to the back part of putamen.
  • The brain atrophy (brain shrinkage) worsened with time in the stretching group.
  • The aerobic exercise group had lower brain atrophy (less brain shrinkage) compared to the stretching group.
  • No change in substantia nigra area was found in either the aerobic nor the stretching group.
  • The aerobic exercise group experienced improved cognitive control compared to the stretching group.
  • The aerobic exercise group had a significantly larger change in functional connectivity within the right frontoparietal network, a cognitive control network, located at the intersection of the frontal (the most front area) and parietal (the upper back area) section of the brain.

What does this mean?

For all people, physical inactivity is a leading modifiable risk factor for cognitive decline, diminished mobility, and reduced quality of life. For people with PD, this study additionally suggests that aerobic exercise, but not stretching, can impart measurable protections and improvements in PD progression, both physically and cognitively.

Specifically, the aerobic exercise group had a a relative posterior-to-anterior shift in sensorimotor cortex connectivity to putamenWhat does this mean? The putamen is involved in learning and motor control/voluntary movement. Generally with PD, the posterior (back part of the) putamen is negatively affected by dopamine depletion, whereas the anterior (front part of the) putamen is relatively spared, allowing for more available dopamine. It has been reported that parts of cortex (the outermost layer of the brain), that normally communicate with the posterior putamen in healthy individuals rely more on the anterior putamen in people with PD. This study suggests that the aerobic exercise, unlike stretching, led to a functional and structural change in the balance of connectivity towards anterior putamen of the brain of people with PD.

That said, the number of PD participants in this study was relatively small. Further research, involving comparisons between people with PD and those without PD and new brain connectivity needs to be conducted.

Bottom line? Exercise is essential for people with Parkinson’s. According to the Parkinson’s Foundation Parkinson’s Outcomes Project, increasing physical activity to at least 2.5 hours a week can slow decline in quality of life. Research dedicated to better understanding the positive impact of exercise and Parkinson’s ultimately helps us guide potential new treatments and empower the Parkinson’s community.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and aerobic exercise by visitng the below Parkinson’s Foundation resources, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636).

Tips for Daily Living

COVID-19 and Parkinson’s Hospitalization Tips: Discussing Advanced Directives

2 nurses having a conversation by elevator

There are many factors to consider when a trip to the hospital is necessary during the COVID-19 pandemic. One important suggestion we have heard from our Parkinson’s disease (PD) community is to make sure to update your Advanced Directives if you have not already. This includes your health care power of attorney (or health care surrogate).

Even though it can be daunting, it is still important to go to the hospital if you do have a serious fall, a heart attack or another incident that warrants care. If you come prepared and advocate for yourself, you can have a successful hospitalization.

About Advanced Directives

Advanced Directives consist of two components:

1. Designation of Healthcare Surrogate (or Proxy)

A document where you name someone as a healthcare surrogate to make healthcare decisions on your behalf should you become incapacitated or unable to communicate. This could apply to a simple procedure where you receive anesthesia, like dental surgery, to more serious medical emergencies or hospitalizations, such as a coma.

2. Living Will

Document that provides directives, or your official instructions, relating to end of life decisions. While this can differ from state to state, a living will can only come into effect in the event that you are terminally ill or in a persistent vegetative state (showing no signs of higher brain function and only alive with medical intervention), and two doctors determine no reasonable medical probability of recovery.

Steps to Update Your Advanced Directives

  1. Find the printable advanced directives here for your state (provided by AARP). Every state has its own paperwork.
     
  2. Print and complete your state’s form. Some states require a notary public, a professional appointed by the state government to be an impartial witness for official documents, to notarize your advanced directives. If this is the case, you can usually find a free notary public at a local bank. All states require witnesses present to sign the form.
     
  3. Keep several copies in your Aware in Care kit. Make sure your loved ones and/or next of kin has a copy. If you live alone, you can choose a trusted person to be your health care agent to ensure access to your directives. If you do not have someone to entrust with your directives, you should still fill out the form and keep several physical and digital copies with you.

Steps to Further Ensure Your Safety in The Hospital

  • Now more than ever, it is important to bring all your Parkinson’s medications in their original bottle when going to the hospital, as a loved one may not be able to bring them to you if your medications are not in the hospital pharmacy (on formulary).
  • Update your Medication Form and print copies to include in your kit.
  • If possible, obtain your doctor’s signature for the Hospitalization During COVID-19 Letterwhich should also be kept in your kit.
  • Every hospital has a different policy around visitors during COVID-19, which includes care partners. Ask your local hospital ahead of time if you will be able to have an in-person advocate with you. Check multiple hospitals in your area — they might each have different policies.

Advice for Care Partners

Hospital staff may or may not take the initiative to contact your family while you are hospitalized, so immediately advocate for ongoing communication.

  • Using the phone of the hospitalized person with Parkinson’s for video calls like Facetime, Skype or Zoom is HIPAA compliant, but requires the person with Parkinson’s to be conscious and coherent, which may or may not be the case.
  • In addition to phone calls from the hospital, Zoom is typically HIPAA compliant from within the hospital, so a care partner can request updates via zoom video call.
  • It is appropriate to contact the hospital to check in on your loved one. Some health professionals recommend calling in once a shift to have up-to-date information.

Learn More

Learn more about Parkinson’s, COVID-19 and hospitalization in the following Parkinson’s Foundation resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636):

Visit Parkinson.org/AwareinCare to order your Aware in Care kit and download essential hospitalization resources.  

Advancing Research

Advanced PD and Palliative Care in the 21st Century

Older woman laughing with a nurse

Palliative care is a holistic, team-based approach to managing chronic health conditions, such as Parkinson’s disease (PD). Palliative care specialists champion quality of life and can be central to navigating the challenges of PD from initial diagnosis, onward. Most insurance plans cover all or part of palliative care treatment costs.

The following article is based on a Parkinson’s Foundation Expert Briefings webinar exploring the role of palliative care in Advanced PD, hosted by Janis M. Miyasaki, MD, MEd, FRCPC, FAAN, Director of the Parkinson and Movement Disorders Program at University of Alberta. Regarded as the founder of PD palliative care, Dr. Miyasaki leads a movement disorders group comprising several neurologists, a neurosurgeon, neuropsychiatrist and geriatrician, and a dedicated interdisciplinary team.

What is Palliative Care?

It’s important to distinguish that palliative care is not hospice or end-of-life care. Palliative care practitioners help patients focus on living well now by actively treating all aspects of a disease.

Palliative care:

  • Improves life
  • Provides pain and symptom relief
  • Integrates psychological and spiritual aspects of patient care
  • Supports patients and families; when caregivers do well, so do people with PD
  • Addresses needs through multiple disciplines
  • Begins early in the course of illness
  • Affirms life and regards dying as a normal process
  • Neither hastens or postpones death

The best palliative care emphasizes well-being. It also acknowledges difficult feelings, such as anger and despair, that can come with a Parkinson’s diagnosis. Addressing these emotions can help people with PD cope with the often-challenging job of managing day-to-day physical symptoms.

The Care Team Role

A person’s Parkinson’s disease journey often begins in a doctor or neurologist’s office. But addressing Parkinson’s changing needs, whether physicalemotional, social or spiritual, takes a team. Specialists can include doctors, nurses, social workers, chaplains, pharmacists, nutritionists and counselors.

People with PD can also struggle with existential distress. Different from depression, these hopeless feelings stem from trying to make sense of overwhelming events, such as a Parkinson’s disease diagnosis. It’s important to address these emotions. A psychologist or an experienced spiritual care practitioner can help.

Managing Pain

As Parkinson’s advances, coping with pain can pose another challenge. Always consult your physician for pain management advice. One of the first lines of PD pain treatment is levodopa, a dopamine agonist. It treats motor symptoms, including rigidity and dystonia (sustained or repetitive muscle twisting, spasms or cramps), associated with PD pain. Range-of-motion exercises, alone or with assistance, also offer relief. A doctor or experienced licensed physical therapist can recommend appropriate exercises.

If levodopa and exercise aren’t adequately addressing pain, talk to your doctor about injectable botulinum toxin A (BOTOX) treatment. It can alleviate dystonia by targeting and weakening overactive muscles.

When all else fails, ask your physician about prescription pain medication. Due to drowsiness, confusion and other side effects, pain medication is often considered last.

Reducing Side Effects       

It’s important to take any medications as prescribed. Skipping doses or waiting until the pain is unbearable can require larger doses of medication to treat symptoms, resulting in increased side effects.

Constipation, another unpleasant pain medication side effect, can lead to more problems, including stomach and back pain, difficulty absorbing medication and hemorrhoids.

Diet can help curtail constipation. It is important to:

  • Drink 64 ounces of water each day
  • Eat a well-balanced, high-fiber diet including fruit, vegetables and whole grains
  • Include dried fruit such as figs, dates
  • Consume more beans and less meat
  • Avoid white bread, rice or pasta    

Consult your doctor about constipation treatment, which can include daily exercise, abdominal massage and/or over-the-counter and prescription therapies. Read the Parkinson’s Foundation publication Constipation and Other Gastrointestinal Problems in PD for constipation solutions to discuss with your doctor.

Planning Advance Care

Palliative care includes planning for the future; a step that requires careful, thoughtful decisions. Because forms can be complicated and confusing, it is important to start the planning process early.

Aging With Dignity’s Five Wishes document can help express:

  1. Who makes future care decisions
  2. Desired medical care
  3. Comfort level
  4. Preferred treatment
  5. Information to share with loved ones

Conclusion

Palliative care fosters comprehensive Parkinson’s disease management. Initial pain management approaches include non-medication therapies and range-of-motion exercises to alleviate PD symptoms. Medication used as prescribed can also minimize pain. Identifying values and consulting a psychologist or spiritual care advisor can lessen existential distress. And advance care plans can guide future healthcare in accordance with your wishes.

Have questions about Parkinson’s disease or anything you read here? Call our Helpline at 1-800-4PD-INFO (473-4636) or email us at Helpline@Parkinson.org.

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