People with PD often tell us that when they get sick with cold and flu-like symptoms, their pharmacist and healthcare professionals warn them to stay away from the medication aisle of the pharmacy. They are told that any over-the-counter medication has the potential to worsen Parkinson’s symptoms. Unfortunately, many people interpret this potential worsening as a recommendation to never use these medications.

Also contributing to this issue is a series of reports that medications such as anticholinergics (like Benadryl) may cause acute confusion and even contribute to long-term cognitive changes. It is important to keep in mind when selecting a cough or flu medication that the intent is not to treat long-term issues.

This flu season we wanted to provide the PD community with some tips to help you navigate Parkinson’s while simultaneously addressing cold and flu symptoms:

• If memory or thinking problems are present, take caution with drugs that may be sedating (such as Sudafed) or that contain an anticholinergic (for example, Trihexyphenidyl, Benadryl, Cogentin, Parsitan). Because of memory and thinking issues, anticholinergics are only rarely used to address cough and cold symptoms.
• Cough syrups with pain medication (such as codeine) could lead to memory issues, thinking problems or sedation. If you take one of these medications your memory and thinking should be monitored as confusion could lead to falls and other negative consequences.
• Pain medication (such as meperidine) can interact with other medications and can result in sedation.
• It may be useful to temporarily stop monoamine oxidase (MAO-B) inhibitor drugs (such as selegiline, rasagiline, safinamide) to avoid drug-drug interactions with cyclobenzaprine, dextromethorphan (often found in cough medicine), meperidine (also sold as Demerol), methadone, St. John's wort or the pain medicine tramadol. Talk to your doctor before making changes to your medications.
• Psuedoephedrine, phenylephrine and phenylpropanolamine can be found in any cold or flu medication and could increase blood pressure and possibly increase the risk of stroke, especially in those with high blood pressure.
• Aspirin, acetaminophen and other nonsteroidal anti-inflammatory drugs are usually safe, but can have side effects (particularly gastrointestinal).
• Antihistamines can sometimes cause drowsiness, but many people with PD can tolerate them for short courses.

In 2014, Kim Painter wrote a great article in the USA Today to help individuals and families stay safe in the cold and flu aisle.

Here are some of Kim’s tips:

• Treat only symptoms you have and be wary of multi-symptom products.
• Know your dose and don’t overdose.
• Know your health risks (for example, decongestants can cause blood pressure spikes, especially if you have hypertension; acetaminophen can lead to liver damage for heavy alcohol users).
• Don't double up and accidentally take two medicines with similar ingredients.
• Consider trying alternatives (rest, fluids, saline nasal sprays, salt-water gargles, honey for cough).

Where does this leave people with Parkinson’s when they find themselves in the medicine aisle? The most important take home is that it is possible to take over the counter medications if you have Parkinson’s disease. However, there are potential risks and benefits, as well as strategies and alternatives that may also address cold and flu concerns.

The commonly used strategy of telling a person with Parkinson’s to suffer through cold and flu symptoms may not always be the best strategy. Working through a solution with your healthcare team makes a lot of sense and can alleviate some of the discomfort associated with cold and flu-like illnesses.

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.

One year after the Parkinson’s Foundation awarded $500,000 in research grants to address critical unmet needs in Parkinson’s disease (PD), we check in with one of three of the researchers making a difference right now. 

Researchers were tasked with jumpstarting practical solutions to ease difficulties related to cognition, fatigue and sleep, all debilitating yet under-recognized symptoms in Parkinson’s. They have each received a grant funded through the Parkinson’s Foundation Community Choice Research Awards, the first program to set research priorities based on the insights of people living with Parkinson’s.

Milton Biagioni, MD, received a research grant to study the "At-home Non-Invasive Brain Stimulation for Fatigue and Cognitive Slowing" at The Marlene and Paolo Fresco Institute for Parkinson’s and Movement Disorders at NYU Langone, a Parkinson’s Foundation Center of Excellence. 

Q: Can you explain your study in less than 100 words?

A: I am studying the likelihood and usefulness of a portable, non-invasive, brain stimulation device to alleviate fatigue and cognitive slowing in people with Parkinson’s. These are two of the most prevalent symptoms responsible for disability and for reducing quality of life in people with PD. To date there are no proven effective treatments available for either symptom. In this study we use a specially designed transcranial direct current stimulator (tDCS) device through a new method of remote supervision. The therapy is done in the participant’s home through video-conferencing.

To learn more about Parkinson’s research visit Parkinson.org/Research.

A recent study by Inga and colleagues at the Mount Sinai Beth Israel Parkinson’s Foundation Center of Excellence in New York examined the incidence of Parkinson’s disease in inflammatory bowel disease patients. The authors were also interested as to whether exposure to anti-tumor necrosis factor therapy (anti-TNF) could possibly reduce the risk of the later development of Parkinson’s disease. In this month’s What’s Hot in PD? blog we will discuss the links between inflammatory bowel disease and also examine the intriguing possibility that anti-TNF or related approaches may one day be used as Parkinson’s disease treatments.

The idea that inflammation is an important factor in the development of Parkinson’s disease is not new and systemic inflammatory diseases may provide an important clue to pathogenesis. There are almost two million people in the United States suffering from inflammatory bowel disease and there has been great interest in its potential links to neurodegeneration. The LRRK2 (leucine-rich repeat kinase 2) gene is a well-established risk factor for Parkinson’s disease. LRRK2 has also been strongly linked to Crohn’s disease, and this link has raised the question as to whether there is a relationship between inflammatory bowel and Parkinson’s disease. Ulcerative colitis is the other common inflammatory bowel disease, and although much less is known about its links to Parkinson’s disease there has been recent interest in exploring this area. Many inflammatory bowel disease studies include both Crohn’s disease and ulcerative colitis patients.

Inga and colleagues, in a recent issue of JAMA Neurology, examined administrative health insurance claims from approximately 170 million people (Truven Health MarketScan administrative claims database and the Medicare Supplemental Database) and observed that inflammatory bowel disease patients were 28% more likely to develop Parkinson’s disease. Even more intriguing was the observation that exposure to anti-TNF therapy was associated with a 78% reduction in Parkinson disease incidence.

Though the studies were observational and the results derived from analysis of data from health insurance claims, the idea that systemic inflammation plays a key role in Parkinson’s disease is intriguing. Anti-TNF or other anti-inflammatory therapies may be candidates for future clinical trials.

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.

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 art therapy led by art therapist and consultant Kimberly Faulkner, ART-BC, LCAT. Read the articles covering some of the other topics discussed, such: intimacy issues, new therapies in trial, oral health and music therapy. 

Center coordinators play a critical role in the Parkinson’s Foundation Center of Excellence network. Not only do they support research activities, coordinate clinical trials and plan outreach services; they act as the liaison between the Parkinson’s Foundation, the center’s care team and patients. They advocate for a multidisciplinary approach to PD care, and work with all members of the care team to make Foundation resources available to patients and their families.

While center coordinators stay up-to-date on the latest PD treatments, they rarely get to experience them firsthand. That’s what made their session about the benefits of art therapy for people with PD so unique; after watching an educational presentation, coordinators from around the world picked up their paint brushes and became art therapy session participants.

Even if someone with PD has not picked up a paint brush since grade school, art therapy can help improve physical, psychological and social functioning.

Symptoms reported to improve with art therapy include:

• Tremor: About 70 percent of people with PD experience tremors at some point of the disease. Stress, as well as fatigue and intense emotions, can temporarily make tremors worse. Most people find art therapy relaxing, and therefore an effective way to reduce tremor in times of stress.
• Freezing: Some people with PD experience the temporary, involuntary ability to move, called freezing. Because art therapy introduces novel motions that are not part of everyday life, it conditions your body to operate less on autopilot, which decreases likelihood of freezing.
• Impaired speech: Art therapy is a powerful communication tool that creates avenues of self-expression that are invaluable to those struggling with speech problems. Even if participants do not have speech problems, it can sometimes be easier to express difficult thoughts and feelings visually instead of verbally.
• Isolation and depression: About half of people with PD can experience some form of depression during the course of the disease. Art therapy creates a sense of community and emotional support that can alleviate feelings of isolation that often make depression more likely.

After coordinators finished their art therapy session, they said they felt relaxed and reconnected with their past as their paintings reminded them of loved ones and allowed them to express themselves through color and shape. They learned that the joy found in art therapy is through the experience rather than the completed artwork. Many admitted that their final piece was far from what they had intended — a butterfly turned into a stingray; a fish evolved into an abstract masterpiece.

Kimberly Faulkner, the art therapist leading the session, encouraged her participants to share their paintings and experiences with their patients when they returned to their centers. “It may give someone else the opportunity to talk about their concerns, fears and anxieties because as adults, we want to make sure everything is so put together and organized,” Kimberly said. “But at some point, we’re all making a mess here and there and that’s okay.”

To find a Parkinson's wellness class near you, contact the Parkinson’s Foundation toll-free Helpline at 1-800-4PD-INFO (473-4636) or Helpline@Parkinson.org. 

Wearing an elastic abdominal binder (a medical version of a girdle available in most drugstores) may help prevent low blood pressure on standing in people with Parkinson’s disease (PD), according to research published in the November 27 online edition of Movement Disorders Clinical Practice.

Many people with mid- and late-stage PD experience a sharp drop in blood pressure when standing up from a sitting position. This symptom is also common among people living with the atypical parkinsonism known as multiple system atrophy (MSA). The medical term for it is neurogenic orthostatic hypotension (nOH), and it can make a person feel dizzy, lose their balance and fall or even lose consciousness. Treating orthostatic hypotension with drugs that raise blood pressure is tricky — the medicines can prevent dizziness when standing up, but can make blood pressure too high when lying down.

Studies in people with other conditions that lead to orthostatic hypotension, including diabetes, have suggested that wearing an elastic abdominal binder — a wide elastic band that supports the stomach — helped them maintain a steady blood pressure.
Researchers led by Klaus Seppi, M.D., at the Innsbruck Medical University in Austria tested the treatment in 15 study participants who had PD and orthostatic hypotension. First, they monitored each study participant’s blood pressure during a “tilt test,” during which participants lay on a flat examining table, which is then raised to a seated position. Then participants wore either an elastic abdominal binder or a placebo binder — one that did not put pressure on the abdomen — for two hours and repeated the test. On a different day the participants switched binders and were tested again. Then all participants wore the elastic binders a few hours a day for four weeks and were assessed again.

Results

• On average, blood pressure was about 10 mm Hg higher when participants sat up wearing the elastic abdominal binder versus the placebo binder.
• Lying-down blood pressure remained the same no matter which binder the participants wore.
• Using an elastic abdominal binder daily for four weeks improved symptoms of orthostatic hypotension.

What Does It Mean?

The study authors conclude that elastic abdominal binders may provide a simple tool to alleviate the troublesome PD symptom of orthostatic hypotension. For some, it may be worth trying because it involves no drugs that might interact with other PD medications, and there is no risk of raising overall blood pressure in people whose blood pressure is already generally high.  
Limitations of the study include the fact that the number of study participants was small and the study was not double blinded (participants knew which group they were in).

In addition, one side effect that remains to be investigated is the possibility that abdominal binders exacerbate varicose veins in the legs. Therefore, a larger, controlled trial will likely need to be performed before abdominal binders receive broad endorsement. In the meantime, talk with your physician to see if you might benefit from this simple tool to help manage orthostatic hypotension.

At the Parkinson’s Foundation, one of our goals is to raise Parkinson’s disease (PD) awareness and how the Foundation supports those living with the disease and their loved ones. If you are familiar with Parkinson’s you probably know most of the items on this list, but we encourage you to share this article with someone who may not be familiar.

1. The cause is unknown and there is no cure.

What causes Parkinson’s remains largely unknown. Genetics cause about 10 to 15 percent of all Parkinson's. The other 85 to 90 percent of cases are classified as sporadic (or occasional). Although there is no cure, treatment options vary and include medications and surgery.

→ Keep reading: What is Parkinson’s

2. People with Parkinson’s can have a good quality life.

There is no one-size-fits-all treatment approach when it comes to PD. While medication is the most common treatment, surgical therapy and lifestyle modifications, like rest and exercise, help manage the disease. Shop around until you find what works best. Find your ideal support group, therapist, exercise class and complementary therapy.

→ Keep reading: Find resources in your area

3. No two people have the same exact symptoms.

The progression of symptoms is often a bit different from one person to another due to the diversity of the disease. People with PD may experience: tremor (mainly at rest); slowness of movements (bradykinesia); limb rigidity; gait and balance problems.

→ Keep reading: Managing Parkinson’s

4. Non-movement symptoms can be more troublesome than motor symptoms.

In addition to movement symptoms, from tremor to balance issues, most people with PD also develop non-movement symptoms that many consider more disabling. They can include:

• Cognitive changes: problems with attention, planning, language or memory
• Mood disorders, such as depression, anxiety, apathy and irritability
• Fatigue
• Hallucinations and delusions
• Lightheadedness (orthostatic hypotension)
• Sexual problems, such as erectile dysfunction
• Sleep disorders, such as insomnia

→ Keep reading: Non-Movement Symptoms

5. Small Handwriting and loss of smell are early signs of Parkinson’s.

A change in handwriting, specifically handwriting that’s gotten smaller over time or crowded, are an early indicator of PD. Another common early sign is the loss of smell of foods like bananas, dill pickles and licorice.

→ Keep reading: 10 Early Signs of Parkinson’s Disease

6. Exercise helps manage Parkinson’s symptoms.

For people with Parkinson’s, exercise is more than healthy — it is a vital component to maintaining balance, mobility and activities of daily living. Exercise and physical activity can improve many PD symptoms. The Parkinson’s Outcomes Project shows that people with PD who start exercising earlier and a minimum of 2.5 hours a week experience a slowed decline in quality of life compared to those who start later. Tai chi, yoga, Pilates, dance, weight training, non-contact boxing and more all have positive effects on PD symptoms. Watch our Fitness Friday videos.

→ Keep reading: Exercise

7. Parkinson’s should be treated through a team approach.

The Parkinson’s Foundation recommends people diagnosed with PD seek out a movement disorders specialist. These specialists are more likely to include other healthcare professionals who can help tackle day-to-day PD challenges in a care team, such as physical therapists, occupational therapists, speech therapists or nutritionists.

→ Keep reading: Importance of Expert Care

8. People with Parkinson’s are not always angry or sad.

Many people with Parkinson’s experience facial masking — reduced facial expression. Often, people with PD look serious, depressed or mad, but many times it’s just that PD is causing muscles in the face to be stiff or take a long time to move.

→ Keep reading: Facial Masking

9. Designated Centers treat Parkinson’s. 

The Parkinson's Foundation leads the development of new treatments through its Centers of Excellence network, comprised of 47 international leading medical centers, staffed by renowned PD specialists. These centers deliver care to more than 193,000 people with Parkinson’s. Participating centers also play a key role in the Foundation’s Parkinson’s Outcomes Project, the largest clinical study of Parkinson’s ever conducted.

→ Keep reading: Centers of Excellence

10. The Parkinson’s community is strong. 

The Parkinson’s Foundation is here for our global Parkinson’s community — that includes family members and caregivers. The Foundation hosts Moving Day walks across the nation and also provides additional ways to get involved — donate, volunteer, host a fundraiser, join PD Conversations or advocate.

→ Keep reading: Get Involved

We’re here for you. Get answers to your Parkinson’s questions when you contact our Helpline at 1-800-4PD-INFO (473-4636) or Helpline@Parkinson.org.

A new study finds that cognitive impairment is a frequent and rapidly progressing symptom of Parkinson’s disease (PD). About half of the participants who had PD for an average of five years and had normal cognition at the beginning of the study developed mild cognitive impairment (MCI) within six years – about 11 years after PD diagnosis. Those few who developed MCI progressed to dementia within five more years. The results appear in the September 11 online edition of Neurology.

With a diagnosis of PD, most people and their physicians focus on treating and coping with movement symptoms. Yet even early in the course of disease, people with PD may have difficulty multitasking, or feel that their thinking abilities are “just not the same.”

To better understand the rate at which cognitive impairment develops, and identify risk factors for the development of cognitive impairment, researchers led by Daniel Weintraub, M.D., recruited 141 people with PD to participate in the study. All were receiving treatment at the University of Pennsylvania’s Udall Center for Parkinson’s Disease Research. On average they were 69 years old and had been living with PD for five years; 63 percent were men. All participants had normal cognition based on a battery of standard tests for people with PD. The researchers re-evaluated study participants’ cognition each year for up to six years.

Results

• With each year of follow-up, a greater percentage of participants had progressed to MCI, reaching 47.4 percent after six years.
• Every participant who was diagnosed with MCI during the study, progressed to dementia within five years.
• Men were at an increased risk of cognitive impairment as were those who had higher scores on rating scales of PD motor symptoms (higher Hoehn and Yahr and UPDRS scores), a longer time living with PD and depression.

What Does It Mean?

Many people live with PD for decades with good cognitive abilities. However, this study adds to a growing body of literature that identifies cognitive impairment as a common non-motor symptom of PD. This study is also among the first to enroll a group of participants with normal cognition and to follow the progression of their cognitive difficulties over time. Compared to other studies, this one found a more rapid rate of cognitive decline among participants.

A better understanding of how PD affects cognition can help people with PD in several ways. With testing for these difficulties early in the course of disease, more people could potentially benefit from rivastigmine (Exelon®) – the only medication approved for dementia in PD.

In addition, the study results underscore the need for better therapies to slow or stop MCI, and PD progression more generally. Most PD clinical trials focus on the motor symptoms, and this study (and others) highlight the urgent need for studies focusing on interventions to slow down the rate of cognitive changes in PD. Additionally, evaluating cognition early in the course of PD could give people the opportunity to participate in clinicaltrials. Increased awareness of MCI also can help guide people in making better informed decisions about their future care.

Experts caution that PD symptoms such as depression and apathy can affect a person’s memory and ability to focus their thinking; it is important to treat these symptoms before evaluating cognition.

A shortcoming of the study is that the participants were all so similar — nearly all were Caucasian, with a high education level (16 years on average) and in a narrow age range (62-73 years). For this reason, the results may not reflect the reality in the larger population of people with PD, in which studies suggest that age is the biggest risk factor for dementia. Studies with larger numbers of participants are needed to confirm the results. One such study, which is following 8,000 people with PD at 20 different centers, already is under way.

One year after the Parkinson’s Foundation awarded $500,000 in research grants to address critical unmet needs in Parkinson’s disease (PD), we check in with one of three of the researchers making a difference right now. 

Researchers were tasked with jumpstarting practical solutions to ease difficulties related to cognition, fatigue and sleep, all debilitating yet under-recognized symptoms in Parkinson’s. They have each received a grant funded through the Parkinson’s Foundation Community Choice Research Awards, the first program to set research priorities based on the insights of people living with Parkinson’s.

Amy W. Amara, MD, PhD, received a research grant to study "Impact of Exercise on Executive Function and Sleep" at the University of Alabama at Birmingham.

To learn more about Parkinson’s research visit Parkinson.org/Research.

One year after the Parkinson’s Foundation awarded $500,000 in research grants to address critical unmet needs in Parkinson’s disease (PD), we check in with one of three of the researchers making a difference right now. 

Researchers were tasked with jumpstarting practical solutions to ease difficulties related to cognition, fatigue and sleep, all debilitating yet under-recognized symptoms in Parkinson’s. They have each received a grant funded through the Parkinson’s Foundation Community Choice Research Awards, the first program to set research priorities based on the insights of people living with Parkinson’s.

Hengyi Rao, PhD, recieved a research grant to study "Using Brain Imaging to track Fatigue in Parkinson's Disease" at The University of Pennsylvania, a Parkinson’s Foundation Center of Excellence.

To learn more about Parkinson’s research visit Parkinson.org/Research.

Warning: This article contains adult-themed issues and terms.

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 sexual disfunction by Gila Bronner, MPH, MSW, CST, Director of Sex Therapy at the SHEBA Medical Center in Israel. Read the articles covering some of the other topics discussed: new therapies in trial, oral health and music therapy. 

Jessica made an appointment with Gila Bronner, MPH, MSW, CST, a sex therapist, to discuss a specific issue: how could she address her husband’s drooling interfering with their sex life. Even though her husband was the one living with Parkinson’s disease (PD), some symptoms affected the both of them.

Intimacy issues and sexual dysfunction is a “couple problem.” It affects both partners. One person’s sexual dysfunction often results in the same effect in their partner. For example, when a man experiences a sexual dysfunction, his partner is more likely to experience sexual dysfunction and dissatisfaction as well.

There is a high prevalence of sexual dysfunction in PD, with problems ranging from erectile dysfunction, reduced desire and frequency, vaginal dryness, orgasm difficulties and more. According to one study, people with PD rate sexual dysfunction in their top 12 most bothersome symptoms (Politis, et al., 2010). Another study cites that 41.9 percent of men and 28.2 percent of women cease sexual activity after being diagnosed with PD (Bronner, et al. 2004).

Sexual dysfunction in PD can be compounded by depression, anxiety, pain and movement-related symptoms, which can affect desire, erectile dysfunction and sexual satisfaction. Sexual dissatisfaction has been associated with movement symptoms in men, anxiety in women and depression in both genders.

As a sex therapist, Gila reminds her patients that it is important to remember that sexuality is not only about sex and orgasms; its emotional, non-sexual physical and intimate aspects play important parts. Intimate touch and sexual activity contribute to a better quality of life and health overall. They are associated with emotional and physical relaxation, better self-esteem, increased vitality and well-being, and closeness between partners.

The increase in oxytocin that comes from massage and touch can even reduce pain. Older people who continue to engage in sexual activity have better overall cognitive functioning (Hartmans, et al. 2014). Therapeutic touch has even been shown to decrease behavioral symptoms of dementia (Woods, et al. 2005).

There are many alternative intimate and sexual activities to treat sexual dysfunction, such as outercourse (other sexual activities besides sex), self-stimulation, non-demanding touch (relaxing and pleasant touch), open sexual communication, compensatory strategies and sexual aids, and erotic thoughts and fantasies.

Intimacy Tips from People with PD and Their Partners

1. Plan sex for when movement symptoms are at a minimum.
2. Apply oily lubricants to lessen the effects of tremor on skin.
3. Use sexual aids.
4. Plan positions in advance with minimized movements between positions.
5. Use lubricants for penetration during intercourse, and be sure to read the lubricant’s instructions before you begin.
6. Use satin sheets to ease movement.
7. Perform intimacy training and erotic tasks.
8. Reduce stress and burden on your partner.

“Remember that the right to share love, touch and intimate moments accompanies us along our life,” said Gila.

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