Parkinson’s disease (PD) results from the death and deterioration of dopamine-producing neurons (brain cells) in an area of the brain called the substantia nigra. What if those cells could be reprogrammed to function in a healthy way? That is the promise of a stem cell therapy that is called induced pluripotent stem cells (iPSCs). If this extraordinary reprogramming capability could be harnessed ― and if the results were sustainable ― that would be a scientific game changer for treating neurological diseases, including the symptoms of Parkinson’s. To be clear, we are not there yet, but we might be one step closer.

A recently published study in the New England Journal of Medicine titled “Personalized iPSC-Derived Dopamine Progenitor Cells for Parkinson’s Disease” (Schweitzer et al., 2020), tested whether a person with Parkinson’s can have a skin cell removed and transplanted into his brain in order to produce dopamine. That person was a 69-year-old man with a 10-year history of slowly, progressive PD. This was a highly complicated, multi-step procedure, involving surgically transplanting four million stem cells into both sides of his brain. It should be noted that the patient paid two million dollars to fund this procedure.

Prior to implantation, the study participant reported poor control of his symptoms, with three hours of “off” time per day, which included worsening tremor, posture and fine motor control; he reported no dyskinesias. Neurologic examinations were performed and PD–specific measures were taken at one, three, six, nine and 12 months after each implantation and at six-month intervals thereafter. The patient first underwent the surgical implantation procedure in the left side of his brain, followed by the right side, six months later. 

Results

• At 24 months after the first (left) implantation and 18 months after the second (right) implantation, the patient reported no adverse events or decline in function.
• Imaging showed that the transplanted cells successfully survived and were functioning.
• Slight motor improvements (6%) were achieved based upon the Movement Disorder Society Unified Parkinson’s Disease Rating Scale (MDS-UPDRS) part III, including the patient’s walking stride, and his ability to bike ride and swim.
• The patient reported an improvement in quality of life, immediately after the surgery was performed. This kind of response suggests that he experienced a placebo effect.

What Does It Mean?

It is encouraging that 24 months after the surgical procedure, the transplanted cells survived and appeared to be functioning. However, survival of these transplanted cells was expected since they were derived from the patient’s own body making transplant rejection unlikely. In terms of the modest improvements in the patient’s motor skills, that too, is encouraging. He was able to reduce his levodopa intake from 12 pills to 11 per day. However, since the patient reported an immediate improvement in his quality of his life, this suggests that he experienced a placebo effect ― as instant improvements are not biologically possible.

Again, this study was administered to one person. Generally, clinical studies are administered in larger sample sizes and can establish a baseline to provide more accurate data and results with a smaller margin of error. At best, scientists believe stem cell therapy will only be a symptomatic treatment, helping in the same ways as levodopa or deep brain stimulation.

The bottom line is that while the one patient may experience an improvement in symptoms, this is not a cure for Parkinson’s nor will this procedure treat non-motor symptoms or help with walking, talking or thinking. In the future, a larger-scale study with a larger population size is the only way we will be able to better understand if a brain cell transplant can truly be a viable treatment option. 

A note of caution: while this study was a brain cell transplant, its findings can mislead people with Parkinson’s to seek stem cell treatments. Beware of stem cell tourism. Stem cell clinics are springing up across the globe, taking advantage of desperate patients. Often advertising their services directly to consumers through the Internet, they make extravagant, unfounded claims about the benefits, downplay the risks, and charge exorbitant fees. Stem cell transplants for Parkinson’s disease (and other neurological conditions) is in research stage, is not a treatment, and one should never pay for a clinical trial research. What these so-called stem cell clinics are offering, is false hope for real money.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about Stem Cells 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.

• Episode 17: Stem Cells and Parkinson’s

Taking care of your oral health is especially important for people with Parkinson’s disease (PD). Parkinson’s can impact the health of the mouth, teeth and jaw and make dental care challenging.

June is National Oral Health Month. Read on to learn about common dental problems in people with PD and tips for maintaining oral health.

Dental Risks Related to PD

Oral health problems arise directly and indirectly from the progression of Parkinson’s. PD-related dental challenges may include:

• Too much saliva. Excessive saliva can lead to a fungal infection at the corners of the mouth.
• Too little saliva. Also known as dry mouth, too little saliva can increase the risk of cavities.
• Cavities. A cavity is a breeding ground for bacteria that can easily infiltrate the blood stream and harm other parts of the body.
• Infected teeth and gums. Your mouth can harbor bacteria that may infect devices, such as deep brain stimulation electrodes, prosthetic hips and knees, vascular stents and grafts.
• Altered face and tongue muscle function. These conditions may affect speech and chewing.
• Swallowing problems. Poorly chewed food can increase the risk of choking and aspiration.

Barriers to Dental Health in PD

Symptoms of PD may hinder your ability to maintain proper oral hygiene, and can potentially worsen dental problems.

Movement Symptoms
Nearly half of all people with PD have difficulty with their daily oral hygiene regimen, due to movement symptoms such as rigidity and tremor. These symptoms also make going to the dentist more difficult and uncomfortable, as weakened swallowing ability can increase the risk of choking during treatment.

Additionally, people with PD who have been on medications like levodopa for several years may begin to develop involuntary movements, which can affect the jaw and cause cracked teeth and teeth grinding. This may create problems during dental exams and at home.

Non-movement Symptoms

Non-movement symptoms of Parkinson’s, such as apathy, depression, and forgetfulness, may lead a person with PD to pay less attention to their daily dental health. People who experience cognitive changes also may be more likely to miss dental appointments and less likely to report dental pain to their care partners or dentist, leaving issues unaddressed for too long.

Other behavior changes can affect nutrition. People with PD require greater caloric intake than those without PD, but some people experience decreased appetite. Combined with poor dental hygiene, this often leads to a tendency to avoid nutrient-rich foods, like vegetables, that require the ability to chew well. Some people may also develop a “sweet tooth,” which may put them at greater risk for cavities.

10 Tips for Improving Dental Health

Follow these tips to keep your oral health in check while managing PD:

1. Stay hydrated. Always eat and drink in an upright position, taking small bites and sips.
2. Brush after every meal for two minutes. If it is not possible to brush after a meal, rinsing the mouth with water will help.
3. Remove dentures after each meal, brush and rinse them. Brush or clean dentures in a solution at night.
4. Use a toothbrush with a large-handled grip and soft bristles. If you prefer an electric toothbrush, be sure it is an oscillating, rotating power toothbrush.
5. Do not use products that include alcohol, as they make dry mouth conditions worse. Your dentist can recommend special products like toothpaste and gels that can help with dry mouth and other oral health problems.
6. Floss. If movement symptoms make flossing difficult, consider using a water pick instead.
7. Avoid using mouthwash. Mouthwashes are typically discouraged for people with PD because of the risk of choking. Ask your doctor or dentist if it is safe for you to use mouthwash.
8. Notify your dental office of your PD symptoms. This will help the dentist and the staff provide better treatment.
9. Schedule dentist appointments wisely. Plan short dental appointments for the time of day your symptoms are most effectively controlled.
10. Have your dental health providers work collaboratively with your other healthcare providers to improve oral health-based quality of life.

If you have concerns about your oral health or you are experiencing dental challenges that may be related to PD, contact your doctor or dentist. Your care team can help you find strategies to take care of your dental health.

To learn more about managing swallowing issues and oral care with Parkinson’s disease, listen to our podcast.

Impulse control behaviors (ICBs) affect between 14% and 40% of people with Parkinson’s disease (PD). Examples of ICB’s include compulsive gambling or shopping, hoarding and hyper sexuality. ICBs become impulse control disorders (ICD) when they impair one’s ability to function at work, home and navigate day-to-day life. Only 2% of people have ICBs in the general population.

Why the dramatic disparity? It has to do with the gold standard medication for PD: Dopamine replacement therapy, such as L-dopa, as well as dopamine agonists, such as Requip (ropinirole), Mirapex (pramipexole) and Neupro (rotigotine), are all strongly linked to experiencing ICBs. This is because dopamine, in addition to relaying messages that plan and control body movement, also plays a primary role in the reward pathway in our brains ― in other words, it makes us feel good, even elated.

Since ICBs are commonly experienced as highly pleasurable ― and even anxiety-relieving ― people with ICBs may go to great lengths to hide their compulsions from friends, family and their healthcare professionals. Unfortunately, all too often, this concealment results in detrimental personal and financial consequences. There is a need to better understand the Parkinson’s-ICB connection.

A large, three-year, prospective, multi-center study published in Neurology titled, “Impulse control disorders in Parkinson disease and RBD: A longitudinal study of severity” (Baig et al., 2019) sought to address four key questions:

1. What is the distribution and severity of PD-ICBs?
2. How does this vary over time?
3. How common are Parkinson’s ICBs?
4. Which clinical factors are associated with PD-ICBs?

In this study, otherwise healthy people with ICBs were compared with those who had PD and a REM sleep behavior disorder (RBD). Why was REM chosen? Previous studies have suggested that the presence of RBDs may infer a higher risk of developing PD-ICD. However, it is not known whether RBD itself, or whether a particular RBD-PD subtype, increases that risk.

There were 932 PD participants in the study. Due to factors such as withdrawal and deaths, 531 completed the study. Those with RBD (and the control arm) were clinically screened for ICBs using the Questionnaire for Impulsivity in Parkinson’s Disease. Those who were ICB-positive were then invited to participate in a semi-structured interview, that was repeated every 18 months. Clinical assessments were performed with a variety of tools to assess a broad range of motor and non-motor symptoms at each visit. Severity of the ICB was assessed with the Parkinson’s Impulse Control Scale, and ICB prevalence and associations were mathematically calculated.

Results

• Impulse control behaviors were common in the early stages of PD (19.1% prevalence).
• There were no increased risks for having ICBs associated age, sex, cognition, sleep disorders or marital status.
• The incidence of depression was higher among participants with PD with ICD than those without.
• There was significant variation in the severity (both the impact and intensity) of PD-ICB – fluctuating within a relatively short period of time.
• Internal factors (mood and coping mechanisms) impacted the severity of PD-related Impulse control behaviors.
• External factors (major life events and social support) also impacted the severity of the PD-ICBs.

What Does This Mean?

This study found that ICBs are common in the early stages of PD, with a larger proportion of this population having symptoms of ICD, but not enough for the behavior to be designated a disorder. While scientists have known for over a decade that dopamine-related drugs could be linked to ICDs in some people with PD, it wasn’t until 2004 that people living with Parkinson’s began to learn that ICDs could be a rare side effect of dopamine agonists.

Thus, dopamine dosage changes may need to be considered, when ICB or ICD behaviors appear to be present. Lastly, people with PD, and their care partners, need to be aware that internal (mood and coping mechanisms) and external factors (major life events and social support) were found to be contributing causes for progressing from an impulse control behavior problem to a disorder.

Learn More

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

• Fact Sheet: Impulse Control
• Why Do I Keep Doing This? Impulsivity

For more insights on this topic, listen to our podcast episode “Clinical Issues Behind Impulse Control Disorders.”

A Parkinson’s disease (PD) diagnosis is life-changing, but it doesn’t have to keep you from living your best life. If you are newly diagnosed, you are not alone. The Parkinson’s Foundation is here to assist and empower you at every stage to ensure you continue living well.

This article is based on a Parkinson’s Foundation Expert Briefings webinar “Newly Diagnosed: Living Your Best Life with Parkinson’s" by Jenna Iseringhausen BSN, RN, Marlene and Paolo Fresco Institute for Parkinson's and Movement Disorders, NYU Langone Medical Center, a Parkinson’s Foundation Center of Excellence.

How Parkinson’s is Diagnosed

There is no specific test for Parkinson’s disease. Doctors look at a person’s symptoms and history, and may use various tests to make a diagnosis. A person must have two of these main movement or motor symptoms to be considered for a PD diagnosis:

• Slowness of movement, known as bradykinesia
• Stiffness, or rigidity
• Loss of balance, also called postural instability
• Tremor or shaking

Just as each person with PD is unique, so is each person’s Parkinson’s disease experience. Possible non-movement symptoms (some of which can occur years before a diagnosis) can include:

• Constipation
• Loss of smell
• Sleep changes
• Mood changes
• Speech
• Memory changes

The Weight of Change

For some, a PD diagnosis is a relief ― an explanation for ongoing changes or symptoms. For others, it can take an emotional toll, both on the person with Parkinson’s and their loved ones.

Take time to acknowledge your feelings and to address any mood changes. Parkinson’s disease itself can affect you physically and can cause depression, anxiety or apathy. Take control of the things you can. Enlist the help of loved ones. Minimizing worry and building support can boost your well-being.

When you’re ready, the Parkinson’s Foundation recommends 5 steps you can take throughout your journey to support optimal living.

1. Set and Prioritize Goals

Start small. Take time to think about how you want to live. Consider any obstacles standing in the way. Set specific, achievable goals to start working toward meaningful change in your life. Enlist loved ones or friends to help you.

As you determine and master smaller, individual goals, reward yourself for your commitment. Continue to build off of your achievements.

2. Talk About It

Communication is key to well-being for people living with Parkinson’s and their care partners. Finding someone you can each to talk to about how you’re feeling is vital. It can also be the first step in building community and outside support.

Family and friends, community or spiritual groups, and even people who share a hobby can be potential sources of assistance and support. One way the Parkinson’s Foundation community connects is through online PD Conversations discussion groups. These include the Newly Diagnosed and Caregiving forums.

3. Create Healthy Habits

Establish healthy habits early, so it becomes part of your daily routine. Healthy eating that incorporates good nutrition can improve medication delivery and ease symptoms. Research shows a Mediterranean diet (emphasizing plant-based staples and healthy fats, while minimizing meat) can improve health. 

Create a regular sleep schedule and bedtime routine to ensure restful sleep, which boosts mood. Try to maintain dental hygiene. Parkinson’s can affect mouth, teeth and jaw health. Brush teeth twice a day, floss, rinse frequently and increase hydration.

4. Be Active

Physical activity can improve many PD symptoms and may also offer neuroprotective benefits. Data shows exercise is important to well-being in PD.

Embrace vigorous exercise early on to improve mood, movement, balance and walking speed.  Exercise can also benefit sleep and relieve constipation. Choose an activity you love that includes stretching, aerobic and strength activities.

5. Find an Expert

Seek a neurologist, a doctor who works with brain and central nervous system conditions such as Parkinson’s. If possible, find a movement disorder specialist ― a neurologist with additional training to treat people with Parkinson’s at every stage.

These experts can often recommend other PD specialists ― nurses, social workers, occupational or physical therapists and speech-language pathologists. A comprehensive care team approach to treatment ensures a high quality of life. Also known as palliative care, this team building begins at diagnosis, enlisting specialists ― as needed ― who communicate with each other to treat Parkinson’s changing physical, emotional, social or spiritual needs.

Get Started

Living well with PD is possible. Incorporating these five steps, in any order, will empower you to live your best life. Relying on medically diverse allied care specialists to help manage your PD symptoms will ensure a high quality of life.

The Parkinson’s Foundation is here for you. Visit the New to Parkinson’s section of our website to learn more and order the Newly Diagnosed kit or contact our free Helpline at 1-800-4PD-INFO (1-800-473-4636).

For many, it is embarrassing to bring up taboo topics with your doctor ― from sexual dysfunction to incontinence. However, when it comes to living with Parkinson’s disease (PD), sometimes these topics can be connected to the disease itself or side effects to PD medications.

No topic should be considered off limits to discuss with your healthcare team. The more we normalize and bring awareness to these issues, the less taboo they become. Scroll down to view some of these topics and their connection to Parkinson's, or click to jump straight to a specific topic.

Sexual Dysfunction

Sexual dysfunction is common in men and women with PD. The issue often goes unaddressed as patients, spouses and healthcare providers may not be comfortable discussing sex. Parkinson’s itself may cause sexual dysfunction due to the loss of dopamine. Medications, such as anti-depressants, can also contribute to sexual dysfunction. To note, most PD drugs are not associated with impotency or loss of libido.

Hypersexuality can also be linked to certain dopamine agonists. There are many ways to address PD-related sexual dysfunction, and it all starts with speaking to your doctor. Try writing your symptoms down before your next appointment and telling your doctor you have a sensitive issue you want to discuss.

Learn more

• Sexual Health and Parkinson’s
• Navigating Sexuality and Intimacy with PD

• Intimacy Issues and Parkinson’s Disease 101

Impulse Control Disorders

Dopamine medications have improved life for millions of people, but researchers believe that some people with PD on dopamine agonists or monoamine oxidase (MAO) inhibitors can develop impulse control disorders: unhealthy levels of gambling, shopping, eating or sexual activity.

If you believe that you or a loved one has an impulse control disorder, try to identify a trend in unhealthy behaviors and discuss it with your doctor. These disorders usually respond to medication changes. Your doctor can often work with you to reduce your dosage or switch to another medication.

Learn more

• Impulse Control
• New Study Examines Impulse Control, REM sleep and Dopamine

Caregiver Burnout

For many, stress can be a part of life when caring for someone with a chronic illness such as PD. However, some care partners may have a tough time coping with the fact that they need help. Care partners and their loved ones should address caregiver burnout as soon as you notice warning signs: feelings of anxiety, anger followed by guilt, bitterness towards family members and depression.

In general, 40 to 70 percent of caregivers are significantly stressed, and about half of these meet the criteria for clinical depression. While a challenge in itself, learn your limits as a care partner and find a support network that works for you. Many times, you can work with your loved one’s care team or a social worker to find additional help and resources that work best for you.

Learn more

• Balancing Life and Caregiving
• What to Expect Emotionally

Palliative Care

For many, the term palliative care is associated with fear. Think of palliative care as supportive care, defined as helping people with Parkinson’s and care partners plan for the future, address non-motor symptoms and provide an extra level of support. Palliative care can help people with PD and their families at any stage.

Palliative care is not the same as hospice care. It does include hospice, which is end-of-life palliative care, but also provides support for patients and families from the time of diagnosis.

Learn more

• Launching A Modern Supportive Care Program Across U.S. Centers of Excellence
• Advanced PD and Palliative Care in the 21st Century
• Palliative and Hospice Care

End of Life Planning

Many adults avoid the subject altogether. However, all adults, even if their health is excellent, should document their wishes and preferences should a health emergency occur. If you have a spouse, partner, children or others you care about, as your disease progresses estate planning can help you ensure that they are provided for and cared for, if necessary.

Get organized. Consider creating a binder with the following main document categories: Medical, Family, Insurance/Property and Finance. Make sure that a close family member or friend knows where to find them in case they are needed. Taking the time to make advance preparations for this inevitability is practical and necessary. Honest conversations about end-of-life planning and care may not be comfortable or easy, but they are important so you can ensure that your wishes are honored.

Learn more

• End of Life
• The Role of Hospice
• Getting Organized
• Caregiving: Preparing for Changes
• Planned Giving

Addressing Uncomfortable Topics with Your Doctor

Doctors usually wait until the end of an appointment to ask, “anything else?” How do you transition into your potentially uncomfortable topic? 

1. Remember that your doctor has heard it all. She/he wants to help you increase your quality of life.
2. Give yourself a quick pep talk. Your symptom or issue has been impeding on your quality of life. The conversation will only last a few minutes and may have a simple solution.
3. Write it down. Give yourself a natural transition in the conversation to bring up your topic. Try something like, “I wrote down some symptoms and/or issues I want to discuss, and they are sensitive in nature.”
4. Add details. Try to remember when the issue began, how long it has been a problem, when it occurs and all your symptoms.

Your doctor will work with you to address the issue and can often provide guidance or a recommendation.

For more information visit our non-movement symptoms page. You can also discuss any topic with our Helpline at 1-800-4PD-INFO (473-4636).

A concussion is a type of traumatic brain injury (TBI). They are generally described as self-limiting and on the less-severe end of the brain injury spectrum. It is estimated that as many as 3.8 million concussions occur in the U.S. every year during competitive sports and recreational activities. That number may be even higher ― research shows that upwards of 50 percent of concussions may go unreported. What does a concussion have to do with Parkinson’s disease (PD) and dementia? Possibly a lot.

Recently published in the journal, Family Medicine and Community Health, a study titled “Associations between concussion and risk of diagnosis of psychological and neurological disorders: a retrospective population-based cohort study” (Morissette, Prior, Tate, Wade, & Leiter, 2020), sought to investigate whether having experienced a concussion might increase one’s risk of being diagnosed with PD and dementia, as well as Attention-Deficit Hyperactivity Disorder (ADHD) and Mood and Anxiety disorders (MADs) later in life.

This is not the first study to connect Parkinson’s to concussions. What makes this study different is that it focuses on Parkinson’s and the more common mild concussion (or mild TBI), sustained from falls or exercise-related injuries. Previously, research has focused on studies comparing PD and concussions known as high-impact TBIs ― those related to sports injuries or traumatic contact sustained by the head.  

This was a robust, case-controlled, 25-year retrospective study examining medical records from 1990-1991 to 2014-2015. It compared the health outcomes of 47,483 people (28,021 men and 19,462 women) who had suffered concussions with 139,030 (81,871 men and 57,159 women) healthy people (controls) matched by age, sex, socioeconomic status and geographical location. The study used several statistics models among other sensitivity models.

Results

Regardless of age, sex, socioeconomic status and residence, having suffered a single concussion in one’s lifetime increased the likelihood of later being diagnosed with:

• Parkinson’s disease by 57%
• Dementia by 72%
• ADHD (Attention-Deficit Hyperactivity Disorder) by 39%
• Mood and Anxiety Disorders (MADs) by 72%
• Sustaining multiple concussions further increased the risk for developing both PD and dementia.

What Does It Mean?

While the CDC considers most TBIs reported annually to be mild, this study found that experiencing a concussion may, in fact, be a substantial risk factor for developing Parkinson’s disease and dementia (as well as ADHD and MADs).

Having a single concussion increased the risk of developing PD by 57% and dementia by 72%; and having multiple concussions further increased the risk of developing PD and dementia compared to people who suffered only one concussion. While additional studies are surely warranted, this study suggests that concussions should be taken more seriously by healthcare providers, as there may be unanticipated, long-term neurological effects.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about the association of brain injuries and PD 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.

• Traumatic Brain Injury Late in Life Increases Parkinson’s Risk
• New Evidence Links Traumatic Brain Injury with Parkinson’s