Although people often think of Parkinson’s disease (PD) as one affecting the elderly, approximately one in 25 people living with PD in the United States received their diagnosis before age 50. This is known as Young-Onset Parkinson’s disease (YOPD). While it shares many motor and non-motor symptoms with typically older onset disease, it does differ in some ways, particularly in terms of speed of progression, reaction to medications, life circumstances and underlying genetic risk factors.

In this episode, the first of two on YOPD, Dr. Bart Post of Radboud University in Nijmegen, the Netherlands, a Parkinson’s Foundation Center of Excellence, describes some of the physical characteristics of YOPD. In the second episode, he will focus on some of the social and interpersonal issues, including work, family, and specifically women’s issues. He will also describe a program that his university has developed for people with YOPD.

Released: March 8, 2022

Deep Brain Stimulation (DBS) is a neurological surgery for the treatment of Parkinson's disease (PD) symptoms. DBS was approved for use in PD in 2002 by the US Food and Drug Administration (FDA) and thousands of people receive the benefits of DBS. Are you a good candidate for DBS?

Learning About DBS

There are several important steps to be taken when considering DBS surgery. The first is to learn about this procedure. Read, gather opinions and talk to your doctor about DBS. It can be beneficial to talk to someone who has already underwent it. If you don't know someone who has been through the DBS surgery process, reach out to a local support group to see if a group member might be willing to talk to you about their experience.

Consult with a Neurologist and a Neuropsychologist

After learning more about DBS, the next step is to make an appointment at a center that specializes in the surgical treatment of Parkinson's. It is important that anyone considering this surgery be evaluated by a neurologist who is familiar with the procedure, expected benefits and potential risks. If a neurologist thinks you are a good candidate for surgery, and you decide to proceed, meet the neurosurgeon to learn more and prepare for surgery.

Neuropsychological testing is also strongly recommended before proceeding with DBS. This test is often standard to ensure DBS is a good option and help determine how it could affect memory and thinking. DBS will not improve or worsen non-motor symptoms associated with Parkinson's.

Are you a good candidate for DBS?

The best candidates for DBS surgery are people who:

• Have been diagnosed with Parkinson's for five years or more
• Have disabling tremors and dyskinesias (involuntary movements of the face, arms, legs or trunk) or severe motor fluctuations
• Experience severe motor fluctuations that cannot be controlled with adjustments to medication schedules
• Often experience significant dyskinesias interspersed with rapids wearing off and off time crises throughout the day

Not everyone is a good candidate for this surgery. It is important to know that some Parkinson's symptoms respond well to DBS and others do not. The decision to undergo surgery depends on a critical assessment of each person's specific symptoms.

Symptoms that respond well to intervention include:

• Tremor
• Stiffness
• Bradykinesia (slowness of movement)
• Dystonia (sustained or repetitive muscle twisting, spasm or cramp
• Dyskinesia

Several factors influence the outcome of DBS. One of the best forecasts is your response to levodopa. People whose symptoms still respond well to individual doses of the drug and who have mobility during their "on" periods usually have better results with DBS.

While some people think DBS should not be considered until Parkinson's medications have become completely ineffective, this is not true. When medications stop working completely, deep brain stimulation won't work, either. Surgery promises more effectiveness for those who experience complications with medications, such as dyskinesias, but continue to respond well to levodopa.

Those who respond well to DBS tend to be people who:

• Respond to carbidopa-levodopa
• Have had typical Parkinson's for more than
  five years
• Can tolerate surgery well
• Don't have severe cognitive issues or
  changes in cognition
• Have a good support network of family and friends who can be involved in learning about the DBS system and process 

Reasons someone is not an ideal DBS candidate include:

• Not having typical Parkinson's
• Not responding well to levodopa
• Has severe dementia, apathy, depression, poor health and poor family support.

Preparing for DBS Surgery

Working closely with your surgeon and your movement disorder clinicians will help you to determine if DBS is right for you. There are currently three DBS systems available that the neurosurgeon should discuss with you — ask for details on each device. Not every DBS surgeon works with all three systems, so it is important that you consider your choice of system and surgeon.

It is beneficial to have a family member or loved one attend DBS-related appointments with you. There are a lot of appointments necessary when considering or receiving DBS, and it is helpful to have an extra person to ensure all the details are covered and necessary questions are asked. If you do get the DBS system surgery, it is extremely important that loved ones or care partners understand the DBS system and how it operates. Older age does not exclude those who are otherwise healthy from being a possible candidate for DBS.

Every person will have unique post-surgery goals. If you are considering DBS, have a clear idea of what may or may not be achieved and manage expectations of how DBS will benefit you.

It is important to remember that deep brain stimulation is an elective procedure. Neurologists and neurosurgeons will make their recommendations, but you and your family make the final decision. Although DBS is not a cure for Parkinson's and does not stop the progression of the disease, it can dramatically reduce some PD motor symptoms and significantly improve the quality of life for suitable candidates.

Seven Steps to Deciding if DBS is For You

1. Talk to your neurologist
2. Get information about deep brain stimulation
3. Talk to someone who has already had deep brain stimulation with a PD diagnosis
4. Visit a center that specializes in surgery for PD
5. Make an appointment with a neurologist at the center
6. Meet the neurosurgeon
7. Meet with a neuropsychologist to have a neuropsychiatric evaluation done

Printing made possible with an educational grant from Medtronic. Content created independently by the Parkinson’s Foundation.

Stress is almost a constant in our lives and especially when coping with changing symptoms of Parkinson’s disease. Adding to the usual stresses are the pandemic with its social isolation and uncertainty of when it will be over, as well as the flood of local and international news. So we all deserve some time to focus on ourselves, and one useful technique is mindfulness meditation, in which a person focuses on being intensely aware of what they are sensing and feeling in that moment. This focus helps give insight into those senses and feelings without interpreting them or judging them. Various techniques can facilitate this practice to reduce stress, including breathing methods and guided imagery. In this episode, Crista Ellis, Community Program Manager with the Parkinson’s Foundation and a certified yoga and meditation educator, describes what mindfulness meditation is, how people can begin the practice, including the Foundation’s Mindfulness Mondays sessions, and what it can do for them.

Released: February 22, 2022

Depression is one of the major, and most common, challenges for people living with Parkinson’s disease (PD). Everyone feels sad from time to time and it is normal to experience stress when faced with a difficult disease such as PD. However, sadness can become a significant problem if it manifests into clinical depression and is left untreated.

We have only recently begun to recognize how common PD-related depression is and its impact on daily life. The Parkinson’s Outcomes Project, the largest clinical study of PD through the Parkinson’s Foundation Centers of Excellence, found that taken together, mood, depression and anxiety have the greatest impact on health status — even more than the motor impairments commonly associated with the disease. Fortunately, previous studies have also shown that treating depression is one of the most significant ways to improve quality of life.

It is especially important for people with PD to discuss even subtle changes in mood with their doctor as soon as they arise because, for many doctors, diagnosing depression can be difficult to differentiate from symptoms of Parkinson’s — such as a masked facial expression, sleep problems and fatigue — which overlap with symptoms of depression.

Sadness Versus Depression

While sadness is temporary, depression is persistent, and the people who experience it find that they cannot enjoy life as they used to. At least 40 percent of people with PD experience clinical depression at some time during the disease. It may occur early or late in the course of the disease and the person who is depressed may find that some days are better than others.

Depression causes personal suffering and also appears to intensify problems with mobility and memory. A person with PD, or his or her care partner or physician, may at first dismiss the signs of depression because they assume that it is normal to be depressed when faced with this illness. This can lead to feelings of helplessness and confusion, which may make the problem worse.

Causes of Depression in PD

There is no clear cause of depression but most specialists agree that it is probably a combination of factors. Research suggests that experiencing depression early in the disease may be directly due to PD-related chemical changes in the brain. Parkinson’s causes changes in areas of the brain that produce serotonin, norepinephrine and dopamine — chemicals that are involved in regulating mood, energy, motivation, appetite and sleep. In addition, the frontal lobe of the brain, which is important in controlling mood, is known to be underactive in PD.

It is very important to address depression because it can affect other symptoms and quality of life. If you are concerned that you or a loved one may be depressed, discuss symptoms with your doctor. There are several ways to treat clinical depression. It is important to find the method that works best for you.

Tips

Because PD Depression is so common, the Parkinson’s Foundation recommends that all people with PD:

• Get screened for depression at least once a year.
• Discuss all changes in mood with their healthcare professional and doctor.
• Bring a family member to doctor’s appointments to discuss changes in their mood.

Treating PD Depression

People with PD who experience uncontrolled “on-off” periods and freezing episodes are more prone to depression, so speak with your doctor about the best approach to controlling these symptoms first. The same is true of some other, non-motor symptoms of PD — for example, poor sleep, constipation and fatigue — that need to be treated to decrease the burden of living with the disease.

Regular exercise can help treat the symptoms of depression and PD. Eating a healthy diet is another approach that can help your overall wellness. Staying involved in social and recreational activities is also important. Have something to look forward to, whether a hobby or socializing with friends and family.

Receiving help from professionals and peers can help you learn to cope with stress, improve social relationships and find solutions to practical day-to-day difficulties. The Parkinson’s Outcome Project found that rates for depression were lowest among patients receiving care from clinics with the most active approach to counseling. Cognitive behavioral therapy, a type of counseling, has been shown to be especially effective in people with PD.

Lastly, know that there are many medications available for depression in PD. Studies have suggested that one class of antidepressants, called “dual reuptake inhibitors,” which affect both serotonin and norepinephrine, improve depressive symptoms in people with PD.

The pharmacological treatment of depression in PD needs to be individualized and may involve a variety of strategies. Make sure your doctor knows that Asendin® (amoxapine) is not an appropriate antidepressant for people with PD. If you or your loved one is currently taking an antidepressant that does not appear to be helping, ask your doctor if a different agent may work better.

For more information about PD-related depression and other mental health symptoms, read a copy of our book Mood: A Mind Guide to Parkinson’s. You can also request more information by calling our Helpline.

There is a great shortage of brain tissue for the study of many neurodegenerative disorders, including Parkinson’s disease (PD). Donations give researchers an opportunity to better understand these neurodegenerative disorders and provide insights on improving treatments and medications.

When is the right time to volunteer to donate?
Deciding to be a brain donor can be difficult. It often helps to seek guidance from loved ones. Talk with your family about your intent to donate, make a living will and tell your doctor your wishes. It is important to enroll with an organization in advance. Some brain banks will not accept a donation unless they already know the person’s wishes and have medical records, and this can take time. Forms will need to be filled out by you or the attending physician.

What is the process after end of life?
A family member or primary care physician will need to call the chosen organization’s 24-hour telephone number to notify them of the passing. This must take place immediately. Some organizations require brain donations to take place within 12 hours of time of death, while some allow donations within 24 hours. Make sure you know the policy of your chosen organization in advance to avoid any delays.

Frequently Asked Questions

Does donating brain tissue delay funeral arrangements?
Brain donation will not delay funeral arrangements and an open casket viewing is still possible.

Do I have to pay to donate?
Most organizations assume financial responsibility for transporting the brain tissue to a pathologist. Funeral expenses still need to be covered by the family.

Can anyone donate?
There are two reasons a brain may not be accepted: if the person passed away from a certain infectious disease or if the person was on a respirator prior to death.

As an organ donor, isn’t my brain included?
Brain donation is not included if you are an organ donor. You need to sign up for brain donation separately.

Can I change my mind?
Brain donation is a personal choice. You may opt out at any time by notifying the organization you signed up with.

Which organizations accept brain tissue?
Call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) for a list of organizations that accept brain tissue. The National Institutes of Health NeuroBioBank (www.neurobiobank.nih.gov) collaborates with six brain banks who collect tissue and then allow scientists to request samples to support their research. Donate to the NeuroBioBank by signing up with the Brain Donor Project: www.braindonorproject.org.

Why do some people with Parkinson’s disease (PD) experience reduced interest, motivation or enthusiasm? It could be apathy. In Parkinson’s the same changes in brain chemistry that can cause movement symptoms can also affect a person’s mood, energy and motivation.

A recent study found that about 40 percent of people with PD experience apathy, a motivational disorder in which people have trouble getting interested in daily activities. Until recently, apathy was largely misunderstood as a form of depression. Today the medical community defines apathy and depression as distinct syndromes with overlapping features.

It is important that people with PD, their care partners and their health teams be able to distinguish between apathy and depression. Medications used for depression can actually make apathy worse. Both apathy and depression can intensify the movement and cognitive symptoms of PD. Treating apathy is critical to improving health and well-being. Continue reading to learn about apathy — how it differs from depression and how people with PD can cope with its effects.

What is Apathy?

Apathy is defined as a lack of motivation. In PD, it shows up in three forms:

• Cognitive. Loss of interest/curiosity in new things.

• Emotional. A lack of passion or reaction to news or situations that normally would evoke an emotion.

• Behavioral. Trouble initiating activity, a need for others to prompt one to complete tasks.

In one study, people with PD who also had apathy spent almost no time pursuing hobbies and spent twice as much time watching TV as those without apathy. People with apathy may find themselves less able to take care of themselves independently and less able to manage their PD effectively. For example, a person with apathy may not be motivated to take medications on time. Apathy in PD can be stressful for care partners and family members who may be unaware of apathy and may instead view the person with PD as lazy or stubborn.

Diagnosis

Care partners may be the first to notice signs of apathy, although they may have trouble differentiating it from depression or sleep issues. Care partners often play an important role in urging the person with PD to seek a diagnosis. There is no universal test for diagnosing apathy. The one most widely used is the Apathy Scale, a questionnaire that people with PD fill out in the doctor’s office. Another is the Lille Apathy Rating Scale, which is administered as an interview between the person with PD and a medical professional.

Is It Apathy or Depression?

Both apathy and depression can lead people to lose pleasure in daily life and enthusiasm for their usual interests. Given this overlap, how can we tell if a person has apathy or depression? In short: sadness, guilt and being worried or hopeless all point to depression, not apathy. By contrast, the inability to “get up and go” may point to apathy. It is possible to experience both and finding ways to cope with each is important to living successfully with PD.

Treatment

The first thing a person with PD and his or her care partner should do upon experiencing apathy is to consult the movement disorder specialist to ensure that PD medications are working optimally. The primary goals for treating apathy are similar to those used for treating PD movement symptoms: increase dopamine in the brain and improve the effect of anti-PD medications. There is no one-size-fits-all therapy for apathy, but research provides some insights.

For example:
• A trial comparing the two most commonly used dopamine agonists found pramipexole (Mirapex®) to be more effective for apathy than ropinirole (Requip®).

• A study found that the rivastigmine (Exelon®) “patch,” a treatment for Alzheimer’s, was effective for treating apathy in people with PD who did not have dementia.

• Another study of repetitive Transcranial Magnetic Stimulation (rTMS) showed that people who received the experimental treatment and those who received a placebo both improved dramatically. The act of participating in the study itself may have boosted motivation.

Better Understanding Apathy

The Parkinson’s Foundation is committed to better understanding how to help people with PD overcome Apathy. In 2017, we funded Nabila Dahodwala, MD, at University of Pennsylvania to study goal-directed behavior in Parkinson’s. This study will test a new way of measuring goal-directed behavior in Parkinson’s. It will also use brain imaging to observe brain changes that occur when people experience apathy and cognitive impairment. The hope is that the study will shed light on the mechanisms underlying apathy and cognition in PD and help in more easily diagnosing them. This knowledge will ultimately allow for the development of targeted PD treatments.

Restorative sleep is vital for optimal physical, mental, and emotional health. Sleep problems affect a large proportion of the general population and take many forms, so the consequences of poor sleep are widespread. In particular, sleep disturbances affect more than 75 percent of people with Parkinson’s disease (PD). And according to our expert guest, Dr. Aleksandar Videnovic of Harvard Medical School and Director of the Division of Sleep Medicine at Massachusetts General Hospital, a Parkinson’s Foundation Center of Excellence, these problems are under reported by patients and under diagnosed by health professionals. The causes of sleep problems include recurrent symptoms of PD, disordered breathing, REM sleep behavior disorder, restless leg syndrome, and periodic limb movement disorder, among other factors and may be multifactorial. In this episode, Dr. Videnovic addresses some of the most frequent sleep problems – insomnia, REM sleep behavior disorder, and daytime sleepiness.

Released: January 25, 2022

It is a long road to become an anesthesiologist – four years of medical school and another four years of postgraduate training and residency. To subspecialize in cardiac anesthesiology requires at least one more year. And Dr. Jonathan Lessin, our guest today, did all of that before he was diagnosed with Parkinson’s disease in his late 30’s, forcing him to adjust his career path.

Anesthesiology is a very “hands on” practice, requiring dexterity to insert and manipulate breathing tubes, intravascular catheters, and imaging, ventilatory, and other mechanical devices. It also requires stamina for long operations. Jonathan was able to continue working for some time after implantation of a deep brain stimulator (DBS). But, taking into account the safety of his patients, he eventually knew it was time to give up the profession he loved. In this episode, he relates his history, how he came to receive a Parkinson’s diagnosis from a friend, how he persevered as long as was practical, and what his DBS allows him to do now.

Released: January 11, 2022

Among the non-motor symptoms of Parkinson’s disease, cognitive and behavioral challenges also can be troubling and disabling. Medication, surgery, and other therapies can help alleviate motor symptoms, but the treatment of mental changes lags behind. Addressing cognitive, behavioral, emotional, and other neuropsychiatric issues may be daunting both for physicians and for the people with Parkinson’s whom they treat. Through a Parkinson’s Foundation grant, Dr. Jennifer Goldman has set up an Integrated Cognitive Behavioral Movement Disorder Program at Rush University Medical Center in Chicago, a Parkinson’s Foundation Center of Excellence. Its mission is to support people with PD and their care partners who need to treat and cope with non-motor as well as motor symptoms of the disease. She discusses some of the care challenges and offers advice for ways to address them.

Released: April 24, 2018

People with Parkinson’s disease (PD) may experience mental health problems, such as depression, apathy, and anxiety more frequently than the general population. Psychosis, such as delusions or hallucinations, may occur as part of the disease or from medications used to treat it. Fortunately, these conditions are treatable if recognized. Unfortunately, clinicians may not screen for them, and therefore, the problems may be missed. In addition, people with PD may come to their clinic visits with a list of physical problems, so they may not make mental health a priority.

In this episode, geriatric psychiatrist Dr. Mary Hart Bryan of the Medical University of South Carolina in Charleston, a Parkinson’s Foundation Center of Excellence, explains some of the mental health conditions that people with PD may experience, and she emphasizes the importance of recognizing these conditions and seeing the proper health care professional for treating them, using psychotherapy, cognitive behavioral therapy, medication, or combinations of these approaches. She shares how care partners, too, often have mental health needs that should be recognized and addressed.

Released: December 14, 2021