From renowned singer Linda Ronstadt to former NBA player Brian Grant, the faces of Parkinson’s disease (PD) are as diverse as the symptoms. While there can be common themes — such as slowed movement (bradykinesia) or stiffness (rigidity) — each person’s PD experience is unique, making individually tailored therapy vital. Fortunately, the list of medications and treatments that improve quality of life for people living with PD continues growing.

This article is based on a Parkinson’s Foundation Expert Briefing Parkinson's Disease & Medication - What's New presented by Vanessa K. Hinson, MD, PhD, Movement Disorders Program director, Medical University of South Carolina, a Parkinson’s Foundation Center of Excellence.

Parkinson’s disease can vary widely from one person to another. Whether or when someone might experience rapid, involuntary and uncontrollable body movements, called dyskinesias, as a complication of some Parkinson’s medications can also fluctuate. Cognitive changes or multitasking can pose challenges for some who live with PD, while others might experience hallucinations. Optimal PD treatment and care should be based on your unique symptoms and help you to live your best life.

Traditional PD Medications

For a go-to medications and Parkinson’s guide, read our free educational book: Medications.

Although a cure for Parkinson’s has still not been discovered, progressive genetic research is accelerating PD science, uncovering knowledge that may lead to breakthrough therapies. Currently, there are medications and surgical treatments that can improve motor and non-motor PD challenges.

Principal among these is carbidopa/levodopa therapy, the most effective PD prescription. The brain’s chemical messenger dopamine diminishes in PD, causing many of the disease’s symptoms. Carbidopa/levodopa (Sinemet) works to increase dopamine levels. Developed more than 50 years ago, this affordable treatment continues to improve symptoms and quality of life for people who live with Parkinson’s today.

Many established medications to boost the effects of carbidopa/levodopa also exist, as well as alternative therapies, including:

• Dopamine agonists: medicines that imitate dopamine’s action in the brain.
• Monoamine Oxidase Type B (MAO-B) inhibitors: enzyme-breakdown inhibitors that prolong that action of dopamine in the brain.
• Amantadine: long used to ease PD tremor, this medicine has more recently been found to improve the dyskinesia that can often start after years of levodopa treatment.
• Surgical treatments: including deep brain stimulation (DBS), can be helpful for those who experience medication complications or motor fluctuations.

While these standard treatments can enhance quality of life with Parkinson’s, they pose challenges, too, such as motor fluctuations. In particular, levodopa can ease movement and improve function, but can also increase dyskinesia at certain doses as time goes on. Known as “off” times, when medications are delayed or wear off, symptoms return. Other common side effects from traditional PD treatments can include:

• Sleepiness
• Dizziness
• Constipation and nausea
• Cognitive changes
• Hallucinations
• Behavioral changes, including compulsive behaviors like gambling or sexual fixation

A movement disorder doctor can highlight potential benefits and risks, while helping you to find the treatment that works best for you. Good motor symptom management might include one of the above traditional PD medications, or a combination of therapies. Today, several newer treatments can enhance PD therapies and treat a diverse array of non-motor symptoms.

Newer Parkinson’s Therapies 

Extended-release carbidopa/levodopa (RYTARY®) has been on the scene for more than five years, yet people are still unaware of its benefits. The capsule may offer longer-lasting symptom improvement for people who experience frequent motor fluctuations.

As PD advances, “off” times can increase. Additionally, some people living with PD can experience gastroparesis (slowed emptying of the stomach). This can make oral medications less effective. Carbidopa/levodopa enteral suspension (CLES or DUOPA™) therapy can lessen motor fluctuations by continuously delivering medicine to the small intestine. This treatment can also lessen dyskinesia. A current clinical research study is exploring how to deliver a similar treatment under the skin using a microneedle.

Levodopa Add-ons

Treatments that complement levodopa can help to minimize motor fluctuations. These include:

• Safinamide (XADAGO®), a once-daily tablet. Similar to rasagiline, this MAO-B inhibitor can reduce “off” times without dyskinesia.
• Opicapone (ONGENTYS®) is a COMT (catechol-o-methyl transferase) inhibitor, like entacapone. Also taken once daily, it extends levodopa benefits and reduces “off” times.
• Istradefylline (NOURIANZ™) blocks dopamine-adjacent adenosine A2 receptors to improve PD symptoms. While safinamide, opicapone and istradefylline can reduce “off” times, they can all potentially increase dyskinesia.
• Another once-daily add-on, an extended-release amantadine formula (GOCOVRI® ER) taken at bedtime, can reduce motor fluctuations and dyskinesia, but can possibly worsen hallucinations in those who experience them. Generic amantadine can also lessen “off” times.

On-Demand Medications

Two newer levodopa add-on medications are designed to quickly ease intermittent, sudden “off” times:

• Levodopa inhalation powder (INBRIJA™) can be administered via inhaler as needed, up to five times a day. It can improve motor fluctuations within 10 minutes and last up to 60 minutes. For some, the powder can cause coughing.
• Sublingual apomorphine (KYNMOBI®) dissolves under the tongue to relieve wearing off episodes for people with PD within 15 minutes, lasting up to 90 minutes. Side effects can include nausea, so treatment may require antinausea therapy. It should be used for the first time in the doctor’s office, as it may briefly induce low blood pressure for some people.

Addressing Dyskinesias

While uncommon in early Parkinson’s, about 90%of people who have lived with PD for 10 or more years will experience dyskinesia. Adjusting medications can help. Sometimes additional medications are required.

One option is the earlier-mentioned amantadine GOCOVRI® ER formula, U.S Food and Drug Administration (FDA) approved to treat dyskinesia. However, it can potentially increase constipation, impact cognition and worsen hallucinations.

Parkinson’s Disease Psychosis

PD psychosis, characterized by confusion, delusions and hallucinations, can be triggered by PD medications, dosages or Parkinson’s itself. Cognitive changes can also be a sign of dementia. These symptoms should be discussed with your doctor.

Medication adjustments can help with PD psychosis, as can clozapine (Clozaril) and quetiapine (Seroquel). A newer treatment, pimavanserin (NUPLAZID®) was approved by the FDA specifically for PD psychosis in 2016.

Low Blood Pressure

Up to half of people living with PD experience lightheadedness, fainting and other symptoms due to neurogenic orthostatic hypotension — a significant blood pressure drop upon standing.

Medication adjustments can help. Medications such as droxidopa (NORTHERA®) may also be beneficial. Droxidopa treats lightheadedness but should not be taken within five hours of bedtime. Headache, dizziness, nausea and fatigue are among the side effects.

Drooling

Decreased swallowing in PD can cause sialorrhea, or drooling. Injectable, FDA-approved therapies can reduce saliva flow. Botulinum toxins XEOMIN® (incobotulinumtoxinA) and MYOBLOC® (rimabotulinumtoxinB) can provide between three to four months of relief.

Tremor-Predominant PD

Deep brain stimulation can improve tremors and motor fluctuations when motor fluctuations aren’t sufficiently controlled with medication. It requires brain surgery.

Focused ultrasound is a minimally invasive surgical procedure that can also improve tremors. An alternative to DBS, it uses high-energy sound waves to terminate a small tremor-related area of the brain. The effects are often immediate. It was approved by the FDA in 2018 for the treatment of tremor-dominated Parkinson’s.

As research continues improving care for people with PD, exercise, a nutritious diet and restorative sleep remain key to symptom management and living your best life.

The Parkinson's Foundation is here for you. Our Helpline has answers to your Parkinson’s questions at 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org

In today’s fast-paced society, with more people spending large amounts of time connected to technology, stress has become the norm. Whether it is short-term, acute stress that comes from situations — such as moving to a new apartment — or long-term, chronic stress caused by long lasting problems — such as ongoing financial or health worries — stress can negatively impact mental and physical health. People with Parkinson’s disease (PD) commonly report that acute stress worsens their motor symptoms, such as freezing of gait, dyskinesia and tremor. People with PD also notice that chronic stress seems to worsen non-motor symptoms, particularly anxiety and depression.

Of note, there are also PD mice studies suggesting that chronic stress can accelerate PD disease progression. A better understanding of how stress impacts PD — and an exploration into possible coping mechanisms — are key to improving PD management.

A recently published study in the journal, Parkinson’s Disease, “Stress and mindfulness in Parkinson's disease - a survey in 5,000 patients” (van der Heide, Speckens, et al., 2021) sought to investigate four questions: 

1. Do people with PD experience more stress than a control group?
2. Which personality and disease characteristics are associated with stress? 
3. Which PD symptoms are especially sensitive to stress? 
4. What strategies might successfully help reduce stress for people with PD — with particular attention to mindfulness (defined in the study as moment-to-moment, non-judgmental awareness). 

Study participants included 5,000 people with PD (average age of 67.3 years, average time living with PD 5.9 years, and 48% women) and 1,292 people without Parkinson’s (average age 60.8 years, 78.0% women). Of those that responded to the survey, 93.9% were Caucasian, 0.5% African American, 1.0% Alaska native, 1.5% Asian, and for 3.0% race was unknown. The majority (82.6%) lived in the U.S. A multitude of well-respected, validated scales were used to measure perceived stress, anxiety, awareness of one’s thoughts and feeling in the moment (dispositional mindfulness), excessive and intrusive negative thoughts (rumination), and self-compassion. Additionally, the study allowed for open-ended feedback from participants, allowing them to list other symptoms affected by stress. 

Results

Understanding the effects of stress:

• People with PD scored significantly worse than those without PD in nearly every category, including anxiety, perceived stress and depressed mood.
• Stress worsened all PD symptoms measured in the survey, including sleeping problems, depression, dyskinesia (involuntary movements), freezing of gait (feeling stuck in place), and bradykinesia (slowness of movement).
• The PD symptom with the strongest stress effect was tremor — experienced by 81.8% of patients.
• Participants with PD with higher stress levels ruminated more, scored lower on quality of life, lower in dispositional mindfulness and lower in self-compassion.
• People with PD under higher levels of stress reported worse disease severity on a daily basis.
• Self-compassion did not differ between people with and without PD.
• People with PD also added to the list of stress symptoms cognitive impairment, loss of focus, confusion, impaired executive function, speech and communication issues, emotional symptoms (anger and frustration, anxiety, nervousness, and apathy, and pain).

Studying stress management methods:

• Exercise (walking, cycling, swimming, sports, yoga, Pilates, or Tai Chi) was most frequently used to reduce stress (83.1%) – with beneficial effects reported on all motor and non-symptoms.
• Mindfulness, practiced by 38.7% of study participants with PD, was linked to improvements in both motor and non-motor symptoms — most notably 60.2% noticed improvement in depression and 64.7% in anxiety. 
• Of the 38.7% of people with PD practicing mindfulness, 85.7% recommended it to others with Parkinson’s.
• The more often mindfulness was practiced by people with PD, the greater the perceived improvement in their Parkinson’s symptoms; approximately half (53.2%) practiced mindfulness at least once a week, and 21.5% practiced once a month or less.
• Mindfulness was experienced as helpful, regardless of PD medication use, and regardless of how long a person had been diagnosed with PD.
• Among the non-mindfulness users, 43.4% were interested in gaining mindfulness skills. 
• Mindfulness users in both groups scored higher on dispositional mindfulness and perceived stress.

These study findings clearly suggest that people with PD experience greater levels of stress than the general population. It is of particular concern that extra sensitivity to stress translated into a significant worsening of both motor and non-motor symptoms. 

Mindfulness (the intentional, active awareness of the present moment, observed without judgment) may improve PD symptom severity. This study demonstrated a significantly positive effect of mindfulness on anxiety and depressed mood. Physical exercise also had a positive effect. Whether or not exercise improved symptom severity in PD directly, by reducing stress, is unclear.

Previous studies have found mindfulness to be a helpful complementary therapy. According to the National Institute of Mental Health, over time, the continued strain on the body from chronic stress may contribute to serious health problems, such as heart disease, high blood pressure, diabetes, and other illnesses, including mental disorders such as depression and anxiety. Chronic stress can also disturb the immune, digestive, cardiovascular, sleep, and reproductive systems, as well as trigger headaches, sleeplessness, sadness, anger, and irritability.

As stated by the study authors, stress has been shown to have a “considerable and detrimental influence on quality of life and on symptom severity” in the PD population. This study also suggests that there are self-management strategies that the PD population can incorporate that are potentially beneficial - particularly mindfulness. However, additional studies are needed with greater diversity of study participants to better understand how mindfulness and physical exercise might be optimized to maximize benefits to motor and non-motor functions.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about stress and mindfulness in the population by visiting the below Parkinson’s Foundation resources, or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to all your Parkinson’s questions.

• Mindful Mondays
• Emotional & Mental Health
• Stress Management for PD
• Anxiety and PD

Parkinson’s disease (PD), skin and bone health are closely intertwined. Researchers are exploring how they are connected to uncover information that could improve lives. Higher bone fracture risk, flaky or dry skin and too much or too little sweating can be common in Parkinson’s. Simple tips can help you tackle these and other related changes.

This article is based on a Parkinson’s Foundation Expert Briefing webinar exploring these connections presented by Nicki Niemann, MD, Muhammad Ali Parkinson Center at Barrow Neurological Institute, and Kenneth W. Lyles, MD, Duke University Medical Center. Barrow and Duke are Parkinson’s Foundation Centers of Excellence.

Parkinson’s and Skin Health

Research shows an overlap in skin health and PD. Overall cancer risk is reduced in Parkinson’s disease, but skin cancer risk — especially melanoma — increases.

In Parkinson’s, misformed alpha-synuclein protein builds up and clumps in the brain. Skin cancer biopsies of people with PD also show increased alpha-synuclein in the skin, compared to the general population. Additionally, people diagnosed with rosacea — facial flushing, redness and sometimes, bumps — are nearly two times as likely to be diagnosed with Parkinson’s.

PD and other neurological disorders also increase the risk for bullous pemphigoid (a skin condition causing itching, redness and large, fluid-filled blisters that can break and cause blood-borne infection).

Connections such as these have scientists exploring skin health as a possible biomarker (a measurable sign, such as heart rate, that can clue doctors in on your health) to help detect Parkinson’s sooner. Skin biopsy holds promise as a potential future Parkinson’s disease diagnostic tool. Earlier diagnosis can improve outcomes for people living with PD.

Skin Cancer Safeguards

Despite past misconception, levodopa, the most commonly prescribed PD medicine, does not increase risk of melanoma. However, though the association is not yet clear, some of the same shared risk factors for PD can also increase melanoma risk. These include being male, Caucasian, having red hair, fair skin and previous pesticide exposure.

Protect yourself by reducing direct sun exposure, wearing sunblock and visiting the dermatologist annually.

When it comes to spotting melanoma, the American Academy of Dermatology recommends watching for these signs:

Asymmetry –the shape of a spot or mole is unequal
Border – an irregular or scalloped edge
Color – blues, reds, browns or black; suspect spots can vary in hue
Diameter differs, too; melanomas can be the size of a pencil eraser, larger or smaller
Evolution in spot color, shape or size should also be shared with your doctor

Skin Health Strategies

Studies estimate between 20 to 60% of people with Parkinson’s may also live with seborrheic dermatitis, compared to just three to four percent of people without PD. Symptoms can include itching, scaling, oiliness, redness and burning — mainly on the scalp, but for some people, the face, chest or back, too.

Over-the-counter medicated shampoos containing salicylic acid, zinc, selenium, tar or ketoconazole can help. A dermatologist can recommend treatment for severe symptoms, such as prescription-strength shampoos, steroids or other immune suppressants.

Excessive drooling can also be common in Parkinson’s. It can cause perioral dermatitis — redness and irritation around the mouth. Anticholinergic medications and botulinum toxin A (BOTOX ®) can be used to decrease drooling.

Sweating Changes     

Sweating too much — whether on the head, neck or trunk — is more common in Parkinson’s than not sweating enough. Excess sweating can also happen on the foot soles, palms or at night. It’s often experienced even prior to a Parkinson’s diagnosis.

Sometimes changes in the autonomic nervous system, an area controlling automatic body functions such as rate of breathing, are responsible. Carbidopa-levodopa-related motor fluctuations, or “wearing off,” can increase sweating, as can other medications unrelated to PD, such as certain antidepressants. Infections, sleep apnea, endocrine conditions and cancer can intensify sweating, too.

Though not as common, decreased sweating can also pose problems for some people with Parkinson’s. This is often related to anticholinergics, including amantadine and trihexyphenidyl. Review your medication list with your doctor who can adjust prescriptions, identify other causes or offer treatments, such as:

• topical medications, including prescription antiperspirant aluminum chloride hexahydrate
• oral propranolol (Inderal®)
• anticholinergic drugs, such as glycopyrrolate
• BOTOX ® injections for localized sweating 
• electric current iontophoresis therapy

These at-home tips can help with sweating:

• Wear breathable cotton clothes and socks, and non-synthetic shoes
• Take lukewarm or cold showers
• Increase fluid intake
• Drink cold liquids
• Use antiperspirant

Skin Changes

Sometimes, PD treatments can cause skin issues. While there are few reports of true levodopa/carbidopa allergy, the 25/100 formulation can cause a rash for some people, possibly due to a yellow dye. If this side effect occurs, your doctor might switch you to formulation without yellow dye, including 10/100, 25/250, Parcopa, Stalevo or Sinemet CR.

Some Parkinson's medications can also cause leg edema (swelling due to trapped fluid). These include amantadine and dopamine agonists, such as ropinirole, pramipexole, rotigotine and apomorphine. Talk to your doctor if leg swelling occurs within a few months of starting a medication.

People using Duopa therapy, levodopa/carbidopa intestinal gel delivered by pump through a small, surgically placed hole in the stomach, can also experience skin issues, including redness, leakage around the opening or abscess. Proper pump tube care and increased healthcare provider access is essential.

Deep brain stimulation (DBS) uses surgically placed electrodes in the brain and with an implantable pulse generator to block abnormal nerve signals in the brain that cause motor symptoms. Though skin-related complications are uncommon, a small percentage of users might experience hardware-site infection, or skin erosion near components.

Parkinson’s and Bone Health

Caring for bone health when living with Parkinson’s is critical. Exercise, regular bone mineral density screenings are key.

It’s estimated that about 45 million Americans have low bone mass, putting them at risk of joining the more than 12 million people in the U.S. who live with osteoporosis (a condition where bones become thin, fragile and prone to fracture). Such skeletal problems are often associated with aging.

People with PD are at higher skeletal fracture risk than others, experiencing fractures two to three times more frequently. Hip fractures occur four times as frequently. At best, less than five percent of people with Parkinson’s who experience fractures are treated. However, addressing and treating fractures is crucial: It can take someone who lives with PD longer to recover from a fall injury or fracture, and they may experience worsening symptoms, loss of independence and cognitive decline.

Fortunately, there are many ways to reduce fracture rates in people with PD and current research is exploring further ways to minimize bone risks.

Who’s at a high risk of osteoporosis?

• People living with Parkinson’s  
• Women
• Older people
• Those with low body weight
• Those with a family history of osteoporosis
• Those with a history of fractures or low-impact fractures
• Smoking and excessive alcohol intake increase risk

Glucocorticoid therapy, medicine used to reduce inflammation, can increase bone loss and fracture risk. Other medications can too — including proton pump inhibitor therapy, anticonvulsants, aromatase inhibitors, tamoxifen, Depo-Provera and steroids. Conditions that are associated with bone loss include gastrointestinal and autoimmune diseases, genetic issues, diabetes and others.

Boosting Bone Health

What’s good for your body is also good for your bones:

• Stop smoking
• Limit alcohol
• Avoid sedating medications

Exercise can keep bones strong and strengthen muscles and in Parkinson’s, it can also improve many disease-related symptoms. Find something that makes you want to move and stay active. Physical therapy can help, too.

Maintaining optimal levels of calcium and vitamin D3 benefits bones and overall health. Because calcium in dairy foods can inhibit levodopa absorption, people with PD can find it hard to get the recommended 1200 mg daily for women over 50 and 1000 mg daily for men over 70. Calcium-fortified foods, such as juices, rice and breakfast cereals, can boost calcium levels. Chewable calcium citrate tablets can be taken without food and are easily absorbed. Doctors recommend limiting single doses to no more than 600 mg elemental calcium, splitting the dose if needed.

The body also needs adequate vitamin D to take in enough calcium. Research shows depressed vitamin D levels in people living with Parkinson’s. Vitamin D is easy to absorb if you live in a sunny place — wear sunscreen. If this isn’t possible, a nutritious diet, including fatty fish, such as salmon, liver, eggs and fortified milk or cereals, can help. Your doctor might also recommend vitamin D3 supplements.

Osteoporosis Medications  

Medicines are also available to treat bone density loss. Hormonal medications include estrogen therapy and raloxifene, a selective estrogen receptor modulator, or SERM.

Prescription therapies that stop bone breakdown, called antiresorptives, include bisphosphonates such as alendronate (Fosamax®), risedronate sodium (Actonel®), ibandronate sodium (Boniva®) and zoledronic acid (Reclast ®). Anabolic medications boost bone building, and include teriparatide, abaloparitide and romosozumab.

Our sensory perceptions help us navigate through the world. Changes to senses, such as vision, can sometimes progress alongside Parkinson’s disease (PD). In some cases, a reduced sense of smell can even precede a PD diagnosis by several years. Identifying and addressing vision changes early can foster continued independence and can also prevent injuries and falls.

This article is based on Sights, Sounds and Parkinson's, a Parkinson’s Foundation Expert Briefing webinar exploring PD and sensory changes, presented by Ali Hamedani, MD, MHS, Professor of Neurology, Divisions of Neuro-Ophthalmology and Movement Disorders, Perelman School of Medicine at University of Pennsylvania — a Parkinson’s Foundation Center of Excellence and PD GENEration enrollment site.

Parkinson’s and Sight

Sight guides many of our daily activities, including reading, texting and driving. In fact, about 40% of our brains are devoted to vision — making it our most dominant sense.

While vision changes are part of aging, Parkinson’s can also impact sight. The American Academy of Ophthalmology recommends a complete eye exam every year or two after 65. Your eye doctor might also refer you to a neuro-ophthalmologist — a neurologist or ophthalmologist with expertise in how neurologic issues impact vision.

While everyone experiences Parkinson’s differently, the disease can impact vision in many ways, most of which are treatable. Though exercise in general can improve many symptoms of Parkinson’s, eye muscles generally can’t be strengthened through exercise.

5 Visual Symptoms Common to People with PD

1. Dry eyes affect people with Parkinson’s due to decreased blinking, and certain PD medications such as amantadine. The condition can be uncomfortable, painful and deceptive.

Some might sense an actual feeling of dryness, while others experience blurry vision, increased glare or sensitivity to light. Soreness, stinging, itching or redness can accompany dry eyes. For some it can feel as if sand is in the eyes. Others may experience watery eyes from dryness.

Dry eyes can even be asymptomatic. Some people with Parkinson's learn from their ophthalmologist they have the condition. Even those without symptoms should take it seriously. Untreated, dry eyes can scar the outer layer of the eye. To treat dry eyes, try preservative-free, over-the-counter eyedrops or artificial tears. Avoid anything designed to reduce redness — this can irritate or worsen dry eyes.

Nighttime dry-eye drops are thicker than daytime drops, as our eyes tend to dry out during sleep. Use artificial tears from four to six times a day. If you take carbidopa/levodopa, try using artificial tears at the time you take your medication. If needed, your eye doctor can offer prescription eye drops or procedures to boost lubrication.

While good for everyone, taking part in an active lifestyle — moving and looking around, exercising and engaging with people — also boosts blinking. Be mindful of too much television or screen time, which can worsen dry eyes.

Blepharitis, eyelid inflammation due to oil and bacteria, can precede or accompany dry eyes. Use warm compresses to ease irritation. Soak a clean washcloth in warm water, then place it over your closed eyelids for 5 to 10 minutes to loosen oils and clean the area.  

2. Double vision, seeing two of the same thing — something up to 30% of people who live with Parkinson’s experience — can occur due to:

• An eye problem such as dry eye, cataracts or the need for eyeglasses.
• Individually healthy eyes that point in slightly different directions.

3. Convergence insufficiency — double vision when focusing on nearby objects, such as reading a book — can emerge or worsen after deep brain stimulation (DBS).

A special type of eyeglass lens, called a prism, can help resolve double vision. Wearing an eye patch as needed can help, too.

Reading — a complex and demanding task — demands clear vision. Anything affecting vision, including dry eyes or double vision, impacts reading ability.

A person with Parkinson’s can benefit from having separate distance and near glasses, rather than bifocals or progressive lenses — which limit the amount of space someone is able to look through to read. People with PD have difficulty generating quick and accurate eye movements in small spaces.

4. Depth perception — understanding where things are in space — can be another common visual PD challenge. Each of our eyes only sees an image in two dimensions. Our brain combines those images to produce a three-dimensional map of the space around us.

Depth perception difficulty can happen if one eye is impaired, whether from a cataract, the need for glasses or something else. Double vision can also impede depth perception. Depth perception challenges can trigger freezing, a Parkinson’s phenomenon that feels as if your feet are temporarily stuck to the floor. This tends to happen in narrow spaces, such as doorways or hallways.

Depth perception issues are also among the Parkinson's-related visual symptoms that can affect driving. People with Parkinson's often must stop driving at some point, but usually not solely due to vision issues. Coordination challenges, delayed reaction time and cognition impairments can all contribute to the need to retire a driving license.

Impaired depth perception is not something that can be readily fixed with either medication or glasses. Management includes good lighting — essential for nighttime bathroom visits — and visual cues, such as a portable laser device that shines a line for you to step over.

5. Visual hallucinations, seeing things that aren’t there, is something about half of people who live with Parkinson’s will experience during their journey. These and other types of PD-related hallucinations can worsen with certain medications.

Research points to reduced visual function as a possible hallucination risk factor.  There is a constant balance in the brain between external and internal visual stimulation. An imbalance between visual information coming from the outside world and information stored in the brain, such as images from previous memories or dreams, can drive hallucinations.

Hallucinations can include the illusion of a presence or movement in the peripheral vision, or the sense of a brief shadow or passing shape, such as an animal or child. Visual hallucinations can also be distressing. It is important to report even mild hallucinations to your Parkinson’s doctor, who might adjust PD medications or offer targeted treatment.

PD and Other Sensory Changes

Although rare, involuntary eye closure — or eyelid-opening apraxia — can also impact some people with PD. Wearing a headband around the forehead can help keep eyes open, as can wearing goggles. Your neurologist might also consider adjusting your medications. Blepharospasm — an involuntary squeezing and closing of the eyes — can be treated with regular botulinum toxin (Botox®) injections. 

Though less studied than vision difficulties, some research suggests people who live with Parkinson’s can experience reduced hearing, compared to people without PD. This can include difficulty telling where sounds are coming from — such as the direction of an approaching car. Hearing aids or assistive listening devices can help.

PD can also impact the sense of smell. Taste and smell are linked. A diminished sense of smell might lead to a reduced appetite. Be sure to eat a nutritious, balanced diet — a key to maintaining good health with Parkinson’s.

Call the Parkinson’s Foundation Helpline at 1.800.4PD.INFO (1-800-473-4636) for expert care referrals and answers to all your Parkinson’s disease questions.  

Parkinson’s disease (PD) can greatly affect your mental health and well-being. An array of non-movement symptoms related to Parkinson’s can impact how you feel. It can be overwhelming to try to address these mental health concerns.

Care partners can also experience negative mental health effects. The stress and unpredictability of Parkinson’s may take a toll on your mental health.

When managing Parkinson’s, utilize this article as a mental health guide to help you advocate for mental health; for yourself and your loved one. Top mental health concerns related to Parkinson’s can include:

• Anxiety
• Apathy
• Depression
• Thinking and cognitive changes

Advocating for Your Mental Health

It can be scary to address your mental health. Sharing your experiences may feel vulnerable. There are many ways to share your story and find resources for your emotional well-being. Here are some signs that you may need help with your mental health:

• Feeling tired even when you get a good night’s sleep
• Being easily irritated
• Not enjoying things you have enjoyed in the past
• Lack of motivation
• Feeling hopeless

These are signs that you may need some extra support. The next step is to share your needs with a healthcare professional. You can talk to your practitioner or a mental health professional directly about what is the best option for you.

Advocating for Your Loved One’s Mental Health

Trying to advocate for a loved one’s mental health may feel uncomfortable and awkward. It is normal to feel worried about invading their privacy or doing the wrong thing. Many times, a person may just need to be shown support and love when they are struggling. Here are signs that your loved one might need help:

• They stop answering your phone calls or texts
• Their mood and behavior change
• They make comments about feeling hopeless
• They stop doing things they have enjoyed in the past
• They ask for your help directly

What does advocating for another person’s mental health look like? Encourage them to seek help. Support them in the process. Share resources and celebrate their courage to talk about mental health.

How to Help Your Loved Ones Advocate for Themselves

It is not your responsibility to carry your loved one’s struggles, but there are many ways to support and encourage them in the process of getting help. Offer to go with them to their appointments. Show how thankful you are for their help as a care partner. Many people just need to know they are not alone in their mental health struggles.

It can be difficult to start a conversation with a loved one about their mental health. Here are some questions to ask a loved one struggling with their mental health:

• Would you like to talk about your mental health?
• How are you feeling?
• What are some things you can do to improve your mental health?
• How can I support you?

Help Promote Mental Health Awareness

Many people are afraid of being judged if they bring up mental health, however it is critical to advocate for your mental health and for a loved one’s mental health. There is also a need to remove the stigma around addressing mental health, and advocate for mental health awareness — especially around a disease that affects cognition, mood and sleep.

Here are ways you can promote mental health:

• Share your story with others. Choosing to tell your story can be inspiring and encourage others who may be struggling. Submit your PD story.
• Attend mental health events, like our “Mindfulness Monday” PD Health @ Home weekly events.
• Discuss mental health with your support group or in PD Conversations.
• Read more about mental health in our books about Cognition, Mood and Sleep.
• Listen to our Substantial Matters Podcast episodes about mental health.

Mental Health Resources

• 6 Helpful Tips for Finding Your Ideal Mental Health Counselor
• Answering the Top Care Partner Questions About Mental Health
• Mental Health Tips for Cognition, Mood and Sleep
• Tips for Talking to a Parkinson's Doctor about Depression

Mental health can be a difficult topic to address, but it is worth advocating for your needs. There are many ways to advocate for your mental health, your loved one’s mental health, and mental health awareness in general.

Not sure where to start? Contact our Helpline at 1-800-4PD-INFO (1-800-473-4636) for help finding mental health resources and wellness events taking place near you.

Social isolation is one of many significant challenges for people with Parkinson’s disease (PD) who are also part of the Lesbian, Gay, Bisexual, Transgender, Queer or Questioning plus other sexual identities (LGBTQ+) community.

“Parkinson’s Pride: Engaging the LGBTQIA Community,” is a first-of-its-kind program funded by a 2021 Parkinson’s Foundation community grant. The program aims to address the community’s unique needs while shaping a new narrative around the group’s shared identities.

“The Parkinson’s Foundation believes in health equity for all in the Parkinson’s community,” said Alyssa Boyle, administrative and community engagement coordinator at the Parkinson’s Foundation. “We are proud to provide funding through community grants like this one that strengthens support for LGBTQ+ people with Parkinson’s.”

Based at Parkinson’s Foundation Center of Excellence Beth Israel Deaconess Medical Center in Boston, MA , “Parkinson’s Pride” hopes to model effective care and support structures for LGBTQ+ people in PD healthcare settings.

“This grant supports a bold and ambitious project that we hope will lead to not only strong community for participants, but will also inform better care for LGBTQ+ people with Parkinson’s across all of the Foundation’s Centers of Excellence,” said Lissa Kapust, project lead and social worker in the Cognitive Neurology department of Beth Israel Deaconess Medical Center.

Of the limited LGBTQ+ Parkinson’s studies, little is currently known about PD experience, care and treatment needs. Researchers have found that discrimination and stigma may hinder knowledge, diagnosis and involvement with multidisciplinary approaches to treatment.

“Sparse literature on LGBTQ+ and PD points to worse health outcomes and unique risks,” said Lissa. “These often underserved individuals may suffer from inadequate care and attention from the medical sphere, with higher rates of depression, anxiety, isolation and body image issues compared to the general population. Understandably, PD can exacerbate these issues.”

Program activities aim to help combat these known challenges through monthly group discussions and workshops. The program helps “bring light in the darkness” for participants, helping them integrate various facets of their identities and build community. A variety of topics are covered, ranging from managing finances, planning for long-term housing, social support, intimacy issues and nutrition planning.

In addition to monthly meetings, participants have the option to engage in workshop to improve overall wellbeing, including writing, music therapy and exercise. Expert speakers provide specialized education and resources, including navigating disclosure, trust and factors that can challenge engagement with care providers.

Participants will shape a “Parkinson’s Pride” virtual celebration event, in conjunction with June Pride celebrations across the U.S. “It is intended to bring our community together, highlighting our accomplishments and promoting positive social media images of people with PD from the LGBTQ+ community,” said Lissa.

Hyam K is a “Parkinson’s Pride” participant who believes in the program’s goal. "As an out and proud gay man now in my 60s, I've long reflected on how our LGBTQ+ community has successfully ushered in a new period of acceptance and understanding through hard-fought decades of enlightened education and visibility,” said Hyam. “It's therefore natural, in that tradition, that I now regard “Parkinson's Pride” as extending our historic continuum even further, by expanding recognition, appreciation and opportunities for those of us with PD."

The hope is that “Parkinson’s Pride” can be replicated in other Parkinson’s Foundation Centers of Excellence. The grant will also fund a video that will highlight key components of the program and several participant interviews.

With the help of participant engagement, Beth Israel Deaconess will create a preliminary set of provider guidelines for LGBTQ+ cultural competency in Parkinson’s.

“Our view could be limited to our location. However, the Parkinson’s Foundation has expanded our perspective, allowing us to develop personal relationships that extend far beyond Boston,” said Lissa. “The effort to make lives better for people with Parkinson’s is energized by this larger reach.”

Lissa is thankful for the Foundation’s support. “The backing from the Parkinson’s Foundation is essential for the success of the program; the reputation of the Foundation has a positive influence at so many levels. The Foundation’s logo on all grant communications conveys the mission and values that are at the core of the work.”

“Parkinson’s Pride” is offered by Beth Israel Deaconess Medical Center and the LGBT Aging Project at Fenway Health, with support from the Parkinson's Foundation. For more information or to enroll, please contact Mikayla Hyman at mhyman@bidmc.harvard.edu or 202-495-3327.

Learn more about Parkinson's and the LGBTQ+ community.