5 Tips for Navigating Parkinson’s-Related Life Changes
Parkinson’s disease (PD) is life-changing. For some people, a diagnosis can be a relief — an explanation for ongoing, unexplained symptoms. Others might experience loss or grief. Some may not even begin to process a diagnosis until years later.
Coming to terms with a Parkinson’s diagnosis is often the first of many changes a person living with the disease will navigate. The path forward, what you expect in a day, in relationships or in the future, can be uncertain. These day-to-day uncertainties can bring about feelings of ambiguous loss (a type of loss without closure).
In January 2023, the Parkinson’s Foundation launched our Mental Wellness Series, featuring blog articles and webinars dedicated to mental health conversations. The below tips are adapted from our first virtual round-table conversation in the new series. These tips can help you begin to discover healthy ways to navigate change when it comes to Parkinson’s.
Acknowledge your grief or feelings of loss.
Throughout life, we experience change. Hobbies, careers, relationships and roles can further change and evolve with Parkinson’s disease. When uncertainty feels like a frequent companion, life can be challenging. Honor your feelings around these changes.
Be kind to yourself.
Whether you are a person with Parkinson’s or a care partner, it’s important to recognize the challenges you face and take time out for self-care. Mindfulness can be helpful in processing change and practicing acceptance, and exercise can ease depression and other PD symptoms.
Lighten your load.
Connection — sharing your worries, your trials and your joys, and listening to the experiences of others walking their own path with Parkinson’s — are good reminders that you are not alone. Whether talking to a trusted friend, reaching out to a local support group or connecting through an online discussion group, such as PD Conversations, you can begin to open up about your hopes and frustrations.
Build a care team.
People experience the symptoms of Parkinson’s differently. Empower yourself with information on the disease management therapies that work best for you. Team-based care relies on various healthcare professionals with PD expertise to manage your symptoms on an as-needed basis.
Mental health care can help you work through change. This can include counseling and psychotherapy (talk therapy). Find reasons to hope.
Radical acceptance is when you acknowledge and honor the reality of life, as it is, in the moment. It can free you to channel your energy toward activities in which you find purpose, meaning and hope. For some, volunteering holds promise and purpose. Others find hope and community through raising awareness or sharing their story. In the face of continual change, exploring healthy coping techniques and finding mental wellness strategies that work for you can help you stay connected to what matters most.
Helpful Resources
The Parkinson’s Foundation is here for you. Explore more of our Mental Wellness resources now:
Parkinson’s Q&A: How do I manage my time and mental health?
Navigating Parkinson’s disease (PD) can feel like a never-ending learning curve. PD Conversations is a place to ask your Parkinson’s questions and connect with others living with the disease. In this blog series, we highlight a high-interest question answered by the Parkinson’s Foundation Helpline on PD Conversations.
Question: With Parkinson’s, how do you find enough time in the day to get everything done and not feel completely overwhelmed? I'm trying to find enough hours in the day to get in the exercise, the cognitive activity, my daily household chores, eating right and taking meds. Any tips?
A Parkinson’s disease diagnosis changes many areas of your life. You may have to readjust the way you work, rest and live. The changes that come with PD can cause emotional distress. Common PD symptoms may also include anxiety, apathy and depression. It is normal to have overwhelming feelings through all the changes of living with Parkinson’s, but there are resources to support your mental health and help you live well with PD.
We're here for you
Call the Parkinson's Foundation Helpline 1.800.4PD.INFO (1-800-473-4636) for answers to your Parkinson's questions.
Time management can sometimes feel like another task for your to do list, but it is crucial to create a schedule and plan that works for you and your unique PD needs. The change of lifestyle that comes with a Parkinson’s diagnosis is unavoidable, but there are ways to actively respond to this change.
Here are tips to help you manage your time:
Establish a consistent schedule. You may not always be able to plan for everything but creating a consistent schedule can help life feel less overwhelming. Talking to your doctor about the priorities and needs of your health is important for establishing a schedule.
Make time for rest. During the busyness of life, it can feel impossible to create time to rest. Setting aside time to slow down and relax can mean just 15 minutes of your day. Rest will look different for every person, but it should be a self-care activity that brightens your day and allows you to relax. Practicing self-care and rest can help to ease the overwhelmed feelings and bring mindfulness to your day.
Create goals for what you want to get done each day. Small, achievable goals can help you move forward with your health. These goals do not have to always be serious; you can create fun goals like going on a walk in a beautiful park or making a new recipe that sounds delicious.
Make time with friends and family. During the day-to-day stress, it is normal to feel lonely. Having intentional time with people you love can help support your mental health. This can be a space to process what you are feeling and connect with loved ones.
Talk with professionals to clarify any confusion and process stress. You are not alone in living with Parkinson’s. It is important to talk to the people on your care team about what you are experiencing. Health professionals can help you manage and plan what needs to get done in your daily life. It may be helpful to talk to a mental health professional about the emotions you experience as well.
Find exercise classes and mental health activities that work for you. Looking for quick, on-demand exercises for your mind or body? Our Mindfulness Mondays videos offer guided relaxation techniques, while our Fitness Friday videos provide at-home workouts led by exercise pros.
We have resources to help with the overwhelmed feelings when living with PD:
We are here to support you and your family through these changes. Please call the Parkinson’s Foundation Helpline for answers to your Parkinson’s questions or referrals to nearby health professionals, support groups or exercise programs at 1-800-4PD-INFO (1-800-473-4636).
I have been an artist for more than 40 years, using an industrial lathe as well as grinders and chisels to make large geometric sculptures. In 2010, I was sitting at my drafting table and the little finger on my left hand began to shake. It continued off and on for a few weeks and was annoying enough that I eventually went to see a neurologist.
He diagnosed the problem as "essential tremor" and said to call him if it got worse. It did get worse — my entire left arm and hand began a continuous tremor, got stiff, and my balance became precarious. I was diagnosed with Parkinson's disease (PD).
I eventually realized I could no longer use the industrial power tools that had been so necessary to the creation of my work. Standing in my empty studio some months later as my son drove away with a truck full of the tools I had assembled over 40 years was a painful and sad moment, but one I couldn't deny. What was my next move?
I originally trained as a painter at Pratt Institute in Brooklyn, NY while working on my Master’s degree, and over the years had painted and drawn, but always considered sculpting my main medium. As the tremor worsened, it was clear that the condo my husband and I lived in was not safe with its 37 steps.
We sold the condo and moved to a Mobile Home Park where I could manage the six stairs. The breakfast room became my studio, my medication was finally adjusted so that the tremor was reduced, and I began work on a series of “Parkinson's Paintings.”
Art for me has always been a passion and part of my daily existence. What I've now found is that it has become major Parkinson's therapy.
I've learned there are many things I can do to lessen the impacts of the disease: keeping a positive attitude, not being afraid, exercising (my husband and I do Tai Chi every afternoon) and finding a spiritual path. Parkinson’s Foundation resources have also helped me find professional resources and more importantly, in understanding how my life with Parkinson's can be improved and enhanced. The most important though is doing that which gives me joy, my art.
There are still many anxious and depressing moments, but the painting and drawing I do every day always bring me fulfillment and satisfaction. I know doing the art definitely reduces the impacts of Parkinson's.
I believe each of us, with this difficult disease, has something similar in their lives. Finding that something will create the courage and strength needed to live well with Parkinson’s.
I have come to see that Parkinson's is a disease of hindsight. As I was putting the pieces together that would eventually lead to my diagnosis, I realized how sneaky the multitude of symptoms were that crept into my life.
I used to walk around the house holding my arm stiffly next to my side as though I was wearing a cast and wonder, why I am I doing that? I took my car into the shop to determine what was going on with the gas pedal, because it seemed to require more and more effort to push with my foot. I stopped writing my work notes by hand because I could barely read my handwriting anymore. I felt chronically fatigued, but just assumed every working mother felt the same way.
The list goes on... but what really caught my attention was when my son noticed that my right arm was barely swinging. My google search informed me that "reduced arm swing is a well-known clinical feature of Parkinson’s disease (PD)."
The first two specialists assured me that there was no cause for my symptoms and that PD was highly unlikely. My symptoms persisted and so did I. The third specialist nailed it and told me I was in the early stages of Parkinson's disease. I had just turned 54. I was slightly relieved to have a flipping name for what was happening to me but mostly I felt overwhelmed and devastated. My neurologist said it often takes six to 18 months to adjust to a PD diagnosis. It took me a year.
It's been two years now and this is what I know:
I was up and down, but mostly down. I knew I had to find a community of support to feel less alone so I did. I joined three different support groups.
I needed to get involved and do something within the PD community so I signed up for Moving Day, A Walk for Parkinson’s, and raised more than $6,000. Now I'm on the planning committee with my son. I needed my family and friends to just be there; I knew they couldn't fix any of this for me. I needed to honor my grief as ambiguous as it was and still is.
I needed to exercise like never before because it's the only thing that is proven to slow progression. And honestly, I needed to lighten up and try not to take myself so seriously. I discovered that Google searches can lead to really dark places if I'm not in the right state of mind when I begin the search — usually, I wasn’t.
I needed to keep being who I am, doing what I can, and embracing what is, even when I don't like it. I know that giving thanks promotes a little more abundance in life and fear gives thanks for nothing. No one wants to have Parkinson's, but I want to do what I can while I can and then say that I did.
I know that I will continue to have good and not so good days. This whole life journey is full of uncertainty with or without Parkinson's. I need to keep showing up and remind myself that I am brave.
Health Care Needs of Veterans Living with Parkinson’s Disease
There are more than 110,000 veterans living with Parkinson’s disease (PD). The Parkinson’s Foundation is interested in the differences between those who receive care at the Veteran’s Health Administration (VHA), a government organization within the Veteran’s Administration (VA) that provides primary and specialized healthcare to veterans of the U.S. military, and the veterans who receive care elsewhere.
A Parkinson’s Foundation survey sought to understand the health status, demographics, and health care utilization of veterans living with PD. The goal was to uncover differences between those who received care within the VHA versus those outside of the VHA.
In the U.S. today, there are more than 19 million veterans, yet less than half of these veterans receive care through the VHA. It is important to find out how care can be improved and in what areas care needs to be improved in order to provide the best possible care for veterans living with PD.
Survey Results
Demographics
The Parkinson’s Foundation distributed the survey to 1,532 veterans living with PD in July 2021 and analyzed 409 complete responses. Survey participant demographics include:
Responses from 47 states
Average respondent age was 74 years
Average amount of time living with PD is 7 years
Primarily white males with around 94% of respondents being white and 92% being male.
Respondents were mainly retired (85%)
Health Service Utilization
Only one-fifth of participants reported receiving care from the VHA. Among those who utilized care from the VHA, 23% did not know that the VHA offered specialized care. Among all respondents:
77% reported seeing a neurologist specializing in PD
75% reported being given a referral for either physical therapy, occupational therapy, speech language pathology or mental health therapy from their PD provider
Physical therapy was the most common referral (67%)
Mental Health
One in three respondents reported mental health concerns in the previous 12 months. Those receiving care at the VHA were more likely to report mental health concerns and were more likely to report poorer mental health, but were also more likely to talk about their mental health concerns with someone (a doctor, friend, family member, etc.).
Reported Falls
Among all respondents:
One out of five reported falling frequently
Two out of five reported having frequent near falls
One-fifth of those who experienced one or more falls, did not report the fall(s) to anyone.
Key Takeaways
This study illuminated key differences and areas for improvement both inside and outside of the VHA. The results from this survey show that:
Getting referrals for allied and mental health early is vital for veterans living with PD
One out of four respondents categorized their mental health condition as poor or fair
Of those who reported a fall in the survey, only half reported the fall to their health care provider
Educating veterans with PD on the type of care they can receive and are eligible for, whether that be through the VHA or not, is crucial
Those receiving care at the VHA were more likely to experience negative health complications but were also more likely to utilize referrals hinting at an underlying difference between those who receive care at the VHA versus elsewhere.
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Explore the below Parkinson’s Foundation resources for veterans and their loved ones:
My journey with Parkinson’s began in 2012 at the age of 31 with a small tremor in a finger. My symptoms slowly progressed to my left hand and foot and I spent the next 2 years seeking a diagnosis before a movement disorder specialist identified my symptoms as Parkinson’s. I didn’t know anything about the disease at the time of my diagnosis so I started learning as much as I could.
I’m grateful to have had bilateral Deep Brain Stimulation (DBS) surgery in 2018 to help manage my tremors, ongoing medication management, Botox injections to manage my focal dystonia, and physical therapy to keep moving. Today, while no longer able to work I can focus my energy and time on all aspects of my health and wellness. As a single parent to a precocious 3-year-old, daily living is a challenge but with support from my family and online community I am at a place in my life where I am happy and content.
At the time of my diagnosis I was in the best physical and mental health of my life, unfortunately Parkinson’s changed all of that. I didn’t take the time in my life to slow down and process my diagnosis and I paid a tremendous price for it. My experience is a cautionary tale but also one of redemption and grace.
My advice to someone newly diagnosed is to focus as much energy and effort on your mental health as your physical health. Find a mental health therapist, identify healthy coping mechanisms, join a support community whether it’s online or in person and process your diagnosis. I’m really grateful to the YOPD Facebook group community for being such a great resource for information and a place to ask questions and to share my experiences. It’s here that I met other LGBTQ people living with Parkinson’s and my friend Jason. As a gay man, living with Parkinson’s you can feel even more isolated, but having a gay friend going through the same experience, I no longer feel alone.
The biggest lesson I have learned is we are not alone. Life with Parkinson’s is possible. Our identities are layered with different facets of who we are as people. Today, I’m happy to share that I’m an out and proud gay man living with Parkinson’s disease.
Caregiver Corner: Lewy What? Explaining Lewy Body Dementia
Many people first heard the term dementia with Lewy bodies when it grappled headlines alongside Robin Williams, who was diagnosed with the disease before his passing. What should you know about this brain disease?
Approximately 1.4 million people in the U.S. are estimated to live with dementia with Lewy bodies (DLB), a progressive brain disorder also known as Lewy body dementia. This progressive disease is often difficult to diagnose. However, knowing the signs can help you or your loved one get answers, and treatment, sooner.
Symptoms
Dementia with Lewy bodies can cause confusion, alter the way a person thinks and behaves and impact movement and memory.
Symptoms include:
Challenges with memory, concentration or multitasking.
Depression is a common symptom for DLB and Parkinson’s. Untreated, depression can lead to suicidal thoughts.
Diagnosis
Dementia with Lewy bodies is diagnosed when cognitive decline (thinking changes) is an early symptom, occurring before or within a year of the onset of movement symptoms.
DLB is known as an atypical parkinsonism. Atypical parkinsonism is difficult to diagnose. Over half of the people living with atypical parkinsonism disorders are initially diagnosed with Parkinson’s disease (PD). In most cases, people see multiple doctors before receiving a diagnosis.
Treatment
While there are currently no medications that slow or reverse DLB, there are many treatments aimed at relieving symptoms and helping ensure safety. People living with dementia with Lewy bodies benefit most from comprehensive, team-based healthcare that includes a mental health professional.
Caring for the body and the mind — through medication, physical and mental exercise — is essential for people living with DLB.
Symptom management is tailored to a person’s unique needs and can include:
Medications such as donepezil (Aricept), galantamine (Razadyne) or rivastigmine (Exelon), may improve cognitive symptoms.
Selective serotonin reuptake inhibitors (SSRIs) and Serotonin and norepinephrine reuptake inhibitors (SNRIs) medicines are used to address depression and anxiety.
Clozapine (Clozaril), quetiapine (Seroquel) and pimavanserin (Nuplazid) are used to lessen hallucinations.
Melatonin or clonazepam can be helpful for RBD.
For those with dementia with Lewy bodies, many Parkinson’s dopamine medications can cause or worsen confusion. These may need to be reduced or eliminated, under a doctor’s guidance. Certain medications sometimes used to treat tremor, called anticholinergics, such as trihexyphenidyl (Artane) and amantadine, can also negatively impact thinking.
Older antidepressants, some bladder medications and nonprescription antihistamines containing diphenhydramine (Benadryl and others) can also negatively impact cognition.
Learn More
If you recognize dementia with Lewy bodies symptoms in your loved one, speak to their Parkinson’s doctor, or a neurologist, who can help you find answers. For more information, explore these resources:
What's Hot in PD? Measuring Quality and Assessing Depression in Parkinson’s Disease
April is Parkinson’s disease awareness month and we thought it would be fitting to discuss how we are approaching the measurement of quality, and how best to measure depression at the bedside in Parkinson’s disease.
The Parkinson's Foundation has been committed to improving the quality of care throughout its Centers of Excellence network and throughout the world by funding and promoting the Quality Improvement Initiative Study. The study was modeled after the Cystic Fibrosis Foundation’s successful registry, profiled by Atul Gawande. In the Cystic Fibrosis experience, their focus on identifying best practices yielded a 10 year increase in life expectancy. In Parkinson’s disease we are hoping for similar success.
The Parkinson's Foundation Quality Improvement Initiative was launched several years ago and the aim was to understand Parkinson’s disease and its care by annually completing a simple profile of the status of people with Parkinson’s and the treatments they receive: one patient assessed on one page, once a year. The study now has 5000 enrolled patients, and, by looking at how patients change each year, we are getting new insight into important issues like mobility, depression, and cognition in patients and their impacts on quality of life, caregiver stress, and hospitalization.
A management guru named Peter Drucker described his philosophy as, “what’s measured improves.” Now, for the first time in a massive, multi-center study across all stages of the disease, we are measuring health and health care in people with Parkinson’s. I am really thrilled to be a part of this important initiative and I and my team are drawing insight from this project every day.
Another of the leaders on our Quality Improvement Initiative is Laura Marsh, MD, of the Houston VA. She specializes in mental health and Parkinson’s and has focused on the evaluation of depression in Parkinson’s disease. This month she published the long-awaited Methods of Optimal Depression Detection in Parkinson's Disease (MOOD-PD) study. This study compared 9 depression scales and made recommendations for use in Parkinson’s disease.
The most important finding was that depression is more common than many thought. She recommends that doctors always screen for depression in Parkinson’s disease patients because it can be well managed, but when it’s not identified, it can affect everything in a patient’s life. Interestingly, the depression screening on the commonly used Unified Parkinson’s Disease Rating Scale performed the worst, and was not recommended for use in screening patients. All other scales performed well. The authors stressed that depression screening should be part of the routine evaluation in Parkinson’s disease patients.
In conclusion, as we strive for better quality of care, we will need to improve our ability to measure quality and to select bedside tests that can help us to better optimize the management of all Parkinson’s disease patients. The Parkinson's Foundation Quality Improvement Initiative Study and the MOOD-PD study are two important steps in this direction.
Selected References
1. Okun MS, Siderowf A, Nutt JG, O'Conner GT, Bloem BR, Olmstead EM, Guttman M, Simuni T, Cheng E, Cohen EV, Parashos S, Marsh L, Malaty IA, Giladi N, Schmidt P, Oberdorf J. Piloting the NPF data-driven quality improvement initiative. Parkinsonism Relat Disord. 2010 Sep;16(8):517-21. Epub 2010 Jul 6. PubMed PMID: 20609611.
2. Williams JR, Hirsch ES, Anderson K, Bush AL, Goldstein SR, Grill S, Lehmann S, Little JT, Margolis RL, Palanci J, Pontone G, Weiss H, Rabins P, Marsh L. A comparison of nine scales to detect depression in Parkinson disease: Which scale to use? Neurology. 2012 Mar 14. [Epub ahead of print] PubMed PMID: 22422897.
New Evidence Links Traumatic Brain Injury with Parkinson’s
A new study finds that traumatic brain injury from a blow to the head, with loss of consciousness, may increase a person’s risk of developing Parkinson’s disease (PD) later in life. The results appear in the July 11 online edition of JAMA Neurology. The researchers did not find an association between head injury and Alzheimer's disease.
The neurological effects of head injuries are much in the news, with worry over repeated, relatively mild, concussions among athletes, and with the recent death of boxing great Muhammad Ali, who lived with Parkinson's disease. This new study, however, focused narrowly on the long-term effects of even one instance of trauma to the head — especially injuries involving loss of consciousness — among older people more representative of the general population.
Researchers led by Paul K. Crane, M.D., M.P.H., at the University of Washington in Seattle, analyzed self-reported data, collected between 1994 and 2014, from 7,130 people who had enrolled in other studies that gathered data on memory, cognition and aging. On average, study participants were 80 years old at the time of this report, and did not have dementia, PD, or Alzheimer’s disease when they enrolled in the original studies. Forty percent were men. Brain tissue was examined on autopsy for 1,589 participants, to search for signs of PD and Alzheimer’s disease.
Results
Eight hundred sixty-five study participants reported having had a traumatic brain injury with loss of consciousness at some time in their lives.
During the time study participants’ health was followed, 117 new cases of PD were diagnosed among the total of 7,130 participants.
A past traumatic brain injury with loss of consciousness longer than an hour was associated with three and a half times increased risk of developing PD.
History of traumatic brain injury was also associated with the accumulation of Lewy bodies in brain cells, the toxic clumps of alpha-synuclein protein that are the hallmark of PD.
Traumatic brain injury was not associated with mild cognitive impairment (MCI)|, dementia, Alzheimer’s or brain changes associated with Alzheimer’s.
Microinfarcts — microscopic strokes in the brain that may be a cause of dementia — were found more often in the brains of people who had traumatic brain injury that lost consciousness for more than one hour.
What Does It Mean?
Head injuries are common, even among non-athletes. Earlier studies have suggested that they might be related to developing Alzheimer’s.
But the new research found instead that just one traumatic brain injury with loss of consciousness of more than one hour was associated with Parkinson’s, and not Alzheimer’s. Although most people recover to normal functioning after a traumatic brain injury, this study suggests that the consequences from even a single head injury may take decades to develop.
The finding underscores the importance of preventing head injuries. It also suggests that additional research to understand the relationship between brain injury and Parkinson's, and why they are linked, might provide ideas for possible interventions for reducing risk of PD.
Beth Vernaleo Ph.D., Associate Director of Research Programs, PDF added, “While previous research has linked head injuries to neurodegenerative disease, this study illustrates a more specific finding — that a single blow to the head causing a loss of consciousness for more than an hour, even in one’s 20s, may lead to a three-fold increased risk of Parkinson’s decades later. Although the vast majority of people who experience head injury will not develop Parkinson’s, this study may provide clinicians with an additional diagnostic tool. For example, asking patients about history of head injury, amongst other symptoms and risk factors, may prove a valuable means of ascertaining the likelihood of a PD diagnosis.”
Crane PK, Gibbons LE, Dams-O’Connor K, et al. (2016). Association of Traumatic Brain Injury With Late-Life Neurodegenerative Conditions and Neuropathologic Findings. JAMA Neurology doi:10.1001/jamaneurol.2016.1948
It is estimated that at least 50 percent of people living with Parkinson’s disease (PD) experience depression at some time during the course of their disease. The Parkinson’s Foundation Parkinson’s Outcomes Project 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.
The sadness and hopelessness that accompanies depression make the challenges of living with PD even greater. The good news is that depression is a Parkinson’s symptom that can be controlled. No one chooses Parkinson’s, but they can choose how to cope with it.
Learn the skills that will empower you take control of your mood, worry less and find meaning in daily life. These skills are modeled on a non-drug therapy called cognitive behavioral therapy, which has been found to be helpful for Parkinson’s-related depression. To cope with depression, you can put these skills into action.
The following article is based on the latest research and a Parkinson’s Foundation Expert Briefings about depression, hosted by Roseanne D. Dobkin, PhD, from Rutgers, The State University of New Jersey, Robert Wood Johnson Medical School.
What Is Cognitive Behavioral Therapy?
Cognitive behavioral therapy (CBT) is a non-drug approach to developing the skills and actions that change patterns of thought and behavior related to depression.
Many factors can cause a person to become and stay depressed. How people think and interpret what goes on around them influences how they feel. As does behavior — what people do, or don’t do, in response to the stresses of life.
Depression can also have a biological cause. Brain changes that underlie PD may contribute to depression. However, it is important to remember that biology is not the only cause; thoughts and behaviors play a significant role. These three factors influence one another and intervening anywhere in the interconnected cycle can help treat depression.
Setting Goals to Change Behavior
The first step in positively changing behavior is to make plans and set goals for activities. Emotions can take control when feeling depressed or anxious. Instead, set clear goals and let these action plans guide you. Think strategically about increasing your involvement in meaningful activities — avoiding being busy for the sake of it. Goals should be small and realistic.
Focus on three areas when goal-setting:
Exercise. Identify a reasonable daily exercise goal, whether it’s Tai Chi or seated exercises. Ask for guidance from a physical or occupational therapist.
Socialize. Keep social goals small and do-able. Don’t jump to hosting a dinner party, instead try simple things like answering the phone or saying hello to a cashier.
Self-soothe. Take time every day for an activity that will lead to a positive emotion — something that just feels good. For instance, relax with a cup of hot tea, take a bath or listen to music.
While planning activities that guide your day, consider these questions:
Are there things you used to love to do that fell off the radar with a PD diagnosis? Consider re-introducing those activities.
If the daily activities you used to enjoy are no longer feasible, are there new activities that can replace them?
Can you modify an activity that used to be enjoyable?
Dr. Dobkin’s friend Howard used CBT to gradually take control over and improve his mood. Howard was a career firefighter. Five years into his PD diagnosis, he was no longer physically able to fight fires. He became depressed and withdrawn, cutting off ties with his firefighter friends, who were like family to him.
During therapy, Dr. Dobkin and Howard tested different ways he could re-connect with his friends. First, he went to a chili dinner — and it wasn’t embarrassing like he thought it would be. Then, he began attending (not participating in) weekly training sessions and pool games at the firehouse. Gradually, Howard began to reconnect. He even helped with the fire department’s fundraising campaign. He realized that even though he couldn’t ride a fire truck, he could stay connected and contribute in many meaningful ways.
Tips to help you set daily goals:
Make them small and meaningful.
Choose activities that make you feel productive and satisfied.
Plan around your physical limitations and “off” time.
Pace yourself.
Be flexible. If you can’t walk for 30 minutes, start with 15.
Ask your doctor for referrals to physical, occupational and speech therapy.
Examine Negative Thoughts to Achieve Balance
When depressed or anxious, thoughts tend to include a lot of negative predictions — the typical response is to think that things will not go right. Most of the time, these predictions are not accurate. Yet, negative thoughts influence what people do and how they feel.
Cognitive behavioral therapy aims to recognize, analyze and test negative thoughts, evolving them into a more balanced, healthier mindset.
Try this cognitive behavioral therapy technique:
Write down negative thoughts. For example, “my PD makes my friends uncomfortable.”
Share the thought with a loved one and discuss it together.
Recognize that it is your opinion and ask, “do others share my perception? Is there evidence against it? Is there an alternative explanation?”
Revise your thought or prediction in a way that helps you cope with the challenges of PD more objectively.
Fight the urge to think in worst-cases.
If possible, find a way to test your thinking. Perhaps you think you can’t eat at a restaurant because of your tremor. Find out. Make plans to test your thought. Increase your chances of success by taking your symptoms into account — for example, go when the restaurant is not crowded, order food you don’t need to cut or ask for a lid and straw for your drink.
Then see what happens. Identify what worked. Can you revise your original negative thought? Going forward, try using more balanced, accurate thoughts to guide how you feel and what you do during the day. Healthy thoughts will help you cope effectively with PD, whereas destructive ones derail your efforts.
Care Partners
Caregivers play an essential role in supporting people with PD who cope with depression. Research has shown people with Parkinson’s using CBT have more improvement in their depression, and for longer, when their care partners receive educational sessions on CBT. Additional benefits for people with PD included less anxiety, fewer negative thoughts and better ability to reframe them, more social interaction and better motor function. The more a loved one was involved with therapy for a person with PD, the better the outcome.
Reinforcing Success
For a person who is depressed, taking action is hard. A surprising effect of cognitive behavioral therapy is that it is self-reinforcing. Set small, specific goals and let the goal guide your behavior, no matter how you feel. When you feel a glimmer of success, your enthusiasm to do more will kick in. A small change in activity can improve a person’s mood. A better outlook can inspire more activity, and a more objective assessment of the future.
Conclusion: Don’t Suffer in Silence
Your mood is a critical aspect of living with PD that you can control. Talk to your friends, family, and doctor about your mood. Any feelings of sadness or hopelessness that negatively impact your day deserve attention. If symptoms are severe, you and your medical team might consider one of the many antidepressant medications. But effective, non-drug treatments also are available, both in combination with drug therapies and on their own. If you are depressed, speak up and seek help.
For more information on depression, anxiety and treatment, read the Parkinson’s Foundation book, Mood: A Mind Guide to Parkinson's Disease or call the foundation’s free Helpline at 1-800-4PD-INFO (473-4636) to speak with a Parkinson’s specialist.
CBT: How to Find a Therapist
Ask your doctor or neurologist for a referral
Ask support group members for referrals
Call the Parkinson’s Foundation’s free Helpline at 1-800-4PD-INFO (473-4636)
Tips for Better Sleep to Help Ward Off Anxiety and Depression
Go to bed and get up at around the same time every day.
Use the bed for sleep only.
Limit daytime naps.
Don’t lie in bed unable to sleep for long periods — get up and do something else until you feel tired, then try to sleep again.
