After reading all 10 early signs of Parkinson’s disease, perhaps you notice you or your loved one is experiencing several symptoms. What should you do next?
Take a second to remember that no single one of these signs means that you should worry. Also know that sometimes symptoms can be caused by an injury, age, or another underlying issues. However, if you have several of these symptoms and you are worried, it may be a good time to:
Follow up with a movement disorder specialist, who will administer a check-up and several tests in the office. A skilled practitioner can come to a reasoned conclusion that it is Parkinson’s. Every person with Parkinson’s has a unique diagnosis story — some people are surprised that a specialist can diagnose them after one in-office visit, while others can take years of misdiagnosis.
If you are diagnosed with Parkinson’s, take these steps:
Learn about coping with a diagnosis. When you or a family member is diagnosed with Parkinson's, you will experience a range of emotions and go through several stages of adjustment to the disease.
Build your care team. If your symptoms interfere with your life in any way, it is never too early to find specialists who are trained in Parkinson’s. For instance, find a physical therapist experienced in Parkinson’s if you have balance issues or a mental health professional who can help with mood changes associated with Parkinson’s.
Be active. Evidence shows that exercise is essential to managing Parkinson’s. Creating a fitness routine soon after your diagnosis is key to living well. Regular physical activity can improve many PD symptoms and offer a neuroprotective effect.
Find what works for you. Take your time to build your new community. We know it can be overwhelming, so here are some ways to get started:
Call our Helpline. Speak with a Helpline specialist who can help you find your nearest support group, PD-tailored exercise class, movement disorder specialist and answer your Parkinson’s questions. Call us at 1-800-4PD-INFO (1-800-473-4636) from Monday to Friday, 9 a.m. ET to 7 p.m. ET.
Even after years of managing Parkinson’s disease (PD), symptoms may become more challenging to control. Parkinson's Foundation Chief Scientific Officer James Beck, PhD, walks us through how symptoms may change over time and when surgical therapies, such as deep brain stimulation (DBS), may become a better option for those living with Parkinson’s.
Pandemic Fast-Tracks Future of Digital Therapies for Parkinson’s Community
In the context of the COVID-19 pandemic, telehealth medicine has emerged as an essential tool for accessing healthcare. This trend has led to increased demand for evidence-based digital treatments, known as digital therapeutics. In response to the demand, the development of digital therapeutics is being fast-tracked in the scientific research community and utilized among people with Parkinson’s disease (PD). Although anyone can create and offer downloadable wellness apps, digital therapeutics require they be based upon rigorous, evidence-based studies that clinically demonstrate their effectiveness.
Since digital therapeutics is an evolving, new technology, still lacking extensive data, it is essential that potential real-word benefits and shortfalls be investigated. A recently published study in the Journal of Parkinson’s Disease, titled, “Digital Therapeutics in Parkinson’s Disease: Practical Applications and Future Potential,” (Ellis & Earhart, 2021), explored recent and emerging evidence for using digital therapeutics to facilitate lifestyle changes and motor (e.g., walking) and non-motor (e.g., sleep, anxiety) Parkinson’s symptoms, with the goal of determining whether participant outcomes might be improved.
As part of this research, researchers reviewed multiple studies. Information provided concerning the length of studies, types of studies, study design, study demographics, number of participants and statistical significance varied greatly. Additionally, most studies were not PD population-specific.
Researchers analyzed the following studies:
Results
Digital Therapeutics to Improve Walking
A one-year, single-blinded randomized controlled trial of people with mild to moderate PD in which participants were given a video-taped custom-tailored exercise program designed to help with walking. After uploading the video as a mobile app for their personal use, participants were required to enter personal data related to their adherence to the program, pain, and level of difficulty. This data was monitored remotely by a physiotherapist with whom the participants could message, ask for help, receive encouragement, etc. The physiotherapist would also adapt the exercises based on the progress achieved.
An increase in daily steps and moderate intensity minutes was experienced by both groups, with clinically meaningful improvement achieved by the less active group.
Digital Therapeutics to Improve Non-Motor Outcomes
A six-session, single-blinded randomized controlled study of 1,711 adults compared digital cognitive behavioral therapy (CBT), delivered via web or mobile, with standard sleep education hygiene, for insomnia on health, psychological well-being, and sleep-related quality-of-life. Treatment consisted of a behavioral component (e.g., relaxation), a cognitive component (e.g., mindfulness) and an educational component (e.g., sleep hygiene). Participants could view their progress, treatment strategies, sleep schedule and educational materials via the platform at their convenience. An interactive, animated virtual therapist provided support and advice based upon the goals set by the patients at the beginning of the study. Participants also uploaded daily data in the form of a sleep diary.
The CBT approach resulted in a small improvement in functional health and psychological well-being. It also resulted in a large improvement in sleep-related quality-of-life compared with sleep hygiene education — after four weeks and 24 weeks. This study was not conducted among people with PD but suggests potential benefits for people with Parkinson’s.
Digital Therapeutics for Virtual Coaching & Healthy Lifestyle Promotion
A 12-week study used an artificial intelligence virtual coach to provide instant messaging (to personal devices) focused upon fostering a Mediterranean-style diet and an increase in physical activity. Eighty-one inactive (mostly overweight or obese) adults, ranging in age from 45 to 75 participated in a proof of concept study (testing whether the concept could realistically work). Weekly check-ins concerning participants’ step counts and dietary choices were recorded.
Physical activity was increased by an average of 109 minutes per week. There was also an overall average weight loss of about 2.8 pounds. Thus, practicality was excellent in terms of recruitment, retention (90% at 12 weeks) and safety. Limitations of this study include a lack of a control condition and a relatively short follow- up period.
What Does This Mean?
The COVID-19 pandemic put the need for remote healthcare in fast-forward. Digital therapeutics — which combines sophisticated technology with evidence-based medicine — shows great promise. It is a meaningful step forward towards more personalized medicine, and could enhance the preferred, more holistic, interdisciplinary approach for managing PD.
However, there is much work to be done. Digital therapeutics remain underdeveloped and underutilized. In addition, while proof-of-concept studies in the general population are valuable, more studies specific to the PD population are needed.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about telehealth, COVID-19 and its impact on the PD population by visiting the below Parkinson’s Foundation resources, or by calling our Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.
Ellis, T. D., & Earhart, G. M. (2021). Digital Therapeutics in Parkinson's Disease: Practical Applications and Future Potential. J Parkinsons Dis, 11(s1), S95-S101. doi:10.3233/JPD-202407
Schneider, R. B., Omberg, L., Macklin, E. A., Daeschler, M., Bataille, L., Anthwal, S., . . . Parkinson Study Group, A. T. H. P. D. I. (2021). Design of a virtual longitudinal observational study in Parkinson's disease (AT-HOME PD). Ann Clin Transl Neurol, 8(2), 308-320. doi:10.1002/acn3.51236
The Latest in Parkinson’s Medications: Taking a Personalized Approach
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.
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:
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
A Beginner's Guide to Managing Pain Through Mindfulness
For most people, pain can be part of daily life. Pain expresses itself and manifests physically, emotionally, spiritually and mentally. Those who live with pain, look for ways to manage it throughout the day — consciously or subconsciously. For people with Parkinson’s, pain is a common non-motor symptom.
Emotional pain can be brought on by stressful situations, from the holidays to a Parkinson’s diagnosis. While physical pain can be brought on by Parkinson’s symptoms or the physical demands of caregiving.
There are many ways to manage physical pain, including:
There are different types of pain, and other ways to manage it. The mind plays a significant role in pain management. When you start to think about how the mind responds to pain, you can start to redirect your thoughts and how to address that sensation, adopting a new technique for managing pain.
Below are six steps to managing pain through mindfulness:
1. Acknowledge your pain.
Which type of pain are you experiencing? Pain can take shape in multiple ways:
Physical pain: felt in the body — tingling, burning, throbbing, aching
Emotional pain: feelings of grief, loneliness, panic or worthlessness
Mental pain: feelings of anxiety or depression
Spiritual pain: feeling disconnected from yourself and others
2. Work on redirecting your response to pain.
Notice where you are experiencing pain. Say, “Hello. I feel you. I hear you. And I accept you.” Repeat this mantra as many times as you need to acknowledge your pain and to begin cultivating a relationship with the sensation or thoughts you are feeling.
A mantra is a sound, or vibration to help reduce stress, anxiety or pain. Mantras can help adapt the brain to how it responds to pain.
3. Recognize your strength.
Your strength comes in many forms — physical, mental, spiritual and emotional — the same ways pain manifests. When living with chronic pain, some people may feel they are not as strong as they should be. Chronic pain can also cause fatigue. Our body and minds also work hard to avoid pain, to push it away. This can lead to exhaustion and forgetting about the strength you do have.
Any amount of strength is reason to celebrate. Find your reason to celebrate — what strength and motivation did you find today? Did your strength look like taking a walk, folding the laundry, cooking, calling a friend to catch up or spending time resting? How did your strength show up today? And tell yourself, “I am strong. I am resilient. I trust my body.”
4. Reduce your stress.
Triggers are events or everyday things that can set you off. They increase blood pressure, anxiety and pain. For example, being stuck in traffic or unable to button a shirt. How you respond to stressors can cause the same stress response in your body. Stress can also make Parkinson’s symptoms worse.
Does stressing about the traffic help the situation? Does feeling frustrated make you feel better? Does looking for your phone with anger improve your search skills? Probably not. In fact, stress slows us down.
Try to categorize your stressors. Ask yourself, “is this situation a mountain or a mole hill?” Next, breathe. Once you can bring yourself to see the significance of a stressor, you can start to feel relief. Pain is also associated with feelings of uncertainty and insecurity, which can manifest itself to become anxiety.
5. Make yourself feel safe when experiencing pain.
Understand that it is common to worry when experiencing pain, but recognize that fear or uncertainty, and work towards making your body and mind feel safe. How can you reduce your anxiety?
Mindful meditation can help — using our breath to calm the nervous system, along with using words and phrases, like mantras.
Calming smells, like essential oils of lavender or jasmine.
Be gentle with yourself. Refrain from judgement and return to objective awareness.
Show yourself some extra love. Be kind to yourself. When your body is hurting, do something kind for it— take a bath, drink herbal tea, breathe into your body and say: “I am safe, I am loved.”
During flare ups, or bad days, it’s even more difficult to remind yourself how far you have come.
6. Stop and think about the positive things.
Our brains find it much easier to hold onto negative memories and emotions than the positive ones. Help your mind, help your brain, remember the positive memories and emotions. Close your eyes and silently say: “Look how far I’ve come” and then add something positive you have accomplished.
It’s a complicated conversation when you start to talk to your pain. Create a deeper connection with your body and how your mind reacts to your body. What kind of conversation do you have with yourself? Can you redirect the language you use to a more supportive, positive and optimistic tone?
Try utilizing a mantra in your daily like. Use a mantra below to help guide your supportive relationship with yourself, your body and your pain — or think of a new one that inspires you.
I feel you. I hear you. And I accept you.
I am strong. I am resilient. I trust my body.
Is this a mountain or a molehill?
I am safe, I am loved.
Look how far I’ve come.
This article is based on a PD Health@Home Mindfulness Monday event, Mantra for Pain Relief with Parkinson’s Disease. Watch the video now.
For more guided mindfulness and relaxation events and videos, visit Parkinson.org/PDHealth.
2021 was an exciting year for the Parkinson’s Foundation. Thanks to YOU we were able to fund more Parkinson’s disease (PD) research and community programs than ever before!
Here are nine ways we made a positive impact in 2021:
1. Reached 3,000 volunteers
We rely on the energy, skill and passion of our volunteers to advance research toward a cure. This year we reached an impressive 3,000 volunteers who want to help us beat Parkinson’s — from our Parkinson’s Champions to our Moving Day volunteers. Thank you!
This investment includes expanding PD GENEration to the Hispanic and Caribbean communities, and $2 million in funding across 143 community grants that support educational and wellness classes.
This year, we participated in the American Academy of Neurology Annual Meeting, presenting on PDGENEration’s evolution to at-home genetic testing during the COVID-19 pandemic.
In the U.S., cannabis has become more widely available for medical and recreational use. Until this survey, there was insufficient data about the attitudes towards, and experiences with cannabis use among those living with PD.
This year we invested $4.3 million in 29 grants to accelerate cutting-edge Parkinson’s research. Each of these studies has the potential to lead us to the next breakthrough PD therapy or treatment.
Together, with the U.S. Department of Veterans Affairs (VA), we hosted new online events created for veterans with Parkinson’s and care partners. We also published new tools and information for veterans, such as our new FAQ guide for veterans.
This fall, we launched Reach Further, a four-year fundraising initiative that will raise an additional $30 million to accelerate Parkinson’s research and increase access to health care and quality-of-life programs.
9. Brought Local Communities Together at Moving Day
We began with virtual and drive through Moving Day events and ended the year strong with safe in-person events. All 47 events brought our local PD communities together.
Anicea Gunlock had goosebumps for hours after her patient went from using a walker to two-stepping.
Starting from their first session, Anicea knew her patient “Larry” was frustrated. He’d had physical and occupational therapy before to help with his Parkinson’s disease (PD) symptoms. His cognition was perfect, but his body wasn’t listening to his brain. Anicea went through her standard physical therapy exercises, but sought to do more for Larry.
“There has to be something else out there that might work better than just telling him to do the same thing over and over,” Anicea said. “That method wasn’t really helping anyone.”
She went home after their initial session and researched. She came across a study that used music to help facilitate a smoother gait pattern for people with PD. She set out to try it for their next session. She knew Larry liked country music, so she chose “Good Ole Boys Like Me” by Don William because it had a steady, slow rhythm, perfect for gait training.
There they were, in their second physical therapy session: Anicea, Larry and Larry’s wife. Anicea pressed play, the music started and Anicia told Larry to take his time, use his walker for support and stand in place for as long as he needed to, until he felt the beat.
“So we stand there for 20 seconds, he starts moving to the beat and off he went,” Anicea said. “It was instantaneous. He took off walking. I’ve never seen anything like it. No freezing, shuffling, going up on his toes. It was amazing. His wife was watching behind us with her hands on her mouth. She was shocked.”
It’d been years since Larry could move like that. After about 15 minutes he pushed his walker to the side and started dancing without it,” Anicea said.
“It was one of the best experiences I’ve ever had doing therapy,” Anicea said. She hit repeat on the song for the rest of the session. It was her first time trying dancing for gait training. She wasn’t equipped with more of a playlist because she couldn’t predict such a great outcome.
Since then she’s tried other songs, but the rhythm and beats didn’t work. “The song really has to have the perfect pace — it can’t be too fast, slow or all over the place,” Anicea said.
For their third session, Anicea asked Larry if she could record the dancing portion of their session. She never thought the video would turn viral. “The whole reason I posted it was to show other therapists how well music worked for gait training in hopes that they can have the same results,” she said.
Since then, Anicea and Larry’s occupational therapist have tried doing activities of daily living exercises to music. While the music helped, and sped up his movement it wasn’t as big a difference as his gait training.
“I’ve never participated in music or dance therapy classes, but I’m definitely interested in learning more about them now,” Anicea said. Since she’s posted the video she’s had other therapists tell her that music has also helped their stroke and dementia patients with exercises as well.
At the end of the day it’s all about her patients. Anicea still works with Larry. “We two-step every other session,” she said. “I try to incorporate his wife as much as possible when she’s there. I’ll play the music and let them dance the song away.”
Whether diagnosed at 31 or 72, tremor or no tremor, fast or slow progression, feeling relief or anger at hearing the words “You have Parkinson’s,” every Parkinson’s disease (PD) story is different. Every person who shared their PD Story with the Parkinson’s Foundation has one thing in common — they hope their story might just help someone else.
Each of the top PD stories below inspire us to keep making life better for people with Parkinson’s. Let these testimonials remind you that you are not alone. We thank everyone who has found the courage to share their story with us and our global PD community.
MY PD STORY: Senator Johnny Isakson
“The Parkinson’s Foundation is taking aggressive steps towards a future without Parkinson’s disease through the Reach Further campaign, and I am proud to support these ambitious plans.”
“If I learned one thing from being diagnosed young, at 21, it is that getting young-onset Parkinson’s is not a death sentence. Life will get tougher; you just have to find a way to adapt.” Read Samantha’s story now.
“From a time before my formal diagnosis, I have understood that exercise is important therapy... but humans are not good at connecting future consequences with immediate actions.”
“On the morning of my first day of ski lessons, my hands were shaking uncontrollably. I wasn't able to hold my cup or eat cereal. At first, I thought that it was just nerves...”
“In 2017 I noticed my husband Scott’s right pinky twitching… A few weeks later, Scott’s whole hand was trembling, and he could no longer hold a glass of water without spilling.”
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.
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
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.
The Parkinson’s Foundation strives to make Parkinson’s resources available to all, reaching learners through more access and a range of platforms — from audio to visual. To expand our reach, we worked with our Helpline team to select key podcast episodes to transcribe. Below find a list of our newly transcribed episodes:
About 70% of people with PD experience tremor sometime during the course of their disease, mainly affecting their hands. In this podcast episode, movement disorders neurologist Muhammad Nashatizadeh, MD, discusses ways to control tremor. Looking beyond today’s therapies, one of his research objectives is to identify new treatment options for debilitating movement disorders.
One of the findings of the Parkinson’s Outcomes Project is that anxiety is a major factor affecting the overall health of people with PD. As many as 40% of people with PD will experience some form of anxiety. In this episode, clinical psychologist Roseanne Dobkin, PhD, discusses the difference between reasonable worry and problematic anxiety and explains some of the ways mental health professionals can help when feelings become distressing or all consuming, interfering with day to day life and activities.
It is estimated that about one in six people with Parkinson’s taking dopaminergic medication will develop an impulse control disorder (ICD) sometime during the course of their disease. In this podcast episode, Gregory Pontone, MD, discusses forms of ICD’s, how to recognize them and tools for discussing them.
From the time of diagnosis and throughout the course of the disease, movement and staying physically active are essential. Exercise and physical therapy can help people with PD keep moving well. In this episode, Heather Cianci, PT, MS shares how physical therapists with a neurological specialization are an important part of the PD health care team and should be consulted early, for an initial evaluation, to address any movement problems and encourage exercise as a part of treatment to minimize problems later.
Sexuality is much more than just physical sexual functioning. It encompasses self-image, attraction and a broad spectrum of emotions. Complex problems may arise for people with Parkinson’s, including motor and non-motor symptoms, sexual functioning, diminished pleasure and changes in relationship dynamics due to symptoms or medications. In this podcast, Gila Bronner, MPH, MSW, CST talks about some of the sexual problems one may encounter with PD and offers practical advice for dealing with them and enhancing intimacy.
Two important issues regarding Parkinson’s medications are when to initiate them in the early phases of the disease and how to ensure that people use their medications on time, every time. In this episode, Indu Subramanian, MD, discusses the timing of when to begin medication and ways to get the most benefit from medications.
Social isolation can have harmful effects on health. It often increases with age because of loss of loved ones, hearing or vision deficits or loss of mobility. Loneliness may lead to poor sleep and depression, two symptoms already experienced by people with PD. In this podcast, Dr. Subramanian discusses loneliness and social isolation and offers suggestions for keeping them at bay.
People with Parkinson’s may experience two seemingly contradictory movement problems. Bradykinesia (slowness of movement) is a cardinal symptom of the disease. Dyskinesias are involuntary, erratic, writhing movements. In this episode, neurologist Benjamin Walter, MD, describes how bradykinesia and dyskinesia can affect people’s lives, how to alleviate the discomfort, how to work with your neurologist to minimize them and what is in development to help.
Among the many non-motor symptoms of Parkinson’s are blood pressure changes. One manifestation is neurogenic orthostatic hypotension, a condition in which blood pressure drops sharply when one moves from a reclining to a more upright position, such as standing up. In this podcast, neurologist Katie Longardner, MD discusses the problem, how it is diagnosed, what people can do to alleviate it and current research.
When to consider an assisted living facility or a skilled nursing facility for someone with Parkinson’s is a monumental decision. Joan Gardner, BSN and Rose Wichmann, PT explore many of the issues that are central to choosing an assisted living or skilled nursing facility as well as ensuring the best experience once someone resides there.
