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
Dementia with Lewy bodies (DLB) is a common progressive brain disease that affects thinking, movement, behavior and sleep. Approximately 1.3 million Americans have Lewy body dementia, but may not be correctly diagnosed because many doctors are unfamiliar with it. Most people see multiple doctors before receiving the final diagnosis of Lewy body dementia. Their first response is often, “Lewy what?”
Symptoms and Diagnosis
Lewy body dementia is a general term and includes both Parkinson’s disease dementia (PDD) (in which Parkinson’s disease is first diagnosed but a year or more later includes dementia) and dementia with Lewy bodies (DLB) (which starts with dementia and is often misdiagnosed as Alzheimer's disease, but may include Parkinson-like symptoms at the time of diagnosis or later). LBD symptoms include dementia, visual hallucinations and frequent variations in cognitive ability, attention or alertness. There are also changes in walking or movement, as well as a sleep disorder called REM sleep behavior disorder, in which people physically act out their dreams. LBD patients may also have a severe sensitivity to medications prescribed for hallucinations.
Treatment
Many LBD symptoms are highly treatable and aggressive symptom detection and treatment can improve quality of life for both the person with LBD and their caregiver. Some Alzheimer’s and Parkinson’s medications can help cognition, behavior and movement symptoms. Family caregivers are an important link in the partnership with healthcare professionals and also require significant support throughout the illness. For more information and to find support visit www.lbda.org.
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.
Stopping the Spiral Toward Demoralization in Parkinson’s Disease
People with chronic diseases such as Parkinson’s disease (PD) are at risk of spiraling into a demoralized state. Common symptoms include feeling helpless, hopeless, a sense of failure and incapacitated to respond to stressful situations. Doctors frequently failto identify or address this issue. There is sparse research and a rare interest in screening for demoralization. In this month’s What’s Hotin PD? column we will address demoralization in Parkinson’s disease and suggest strategies to identify and address this problem.
Brian Koo, MD, and colleagues in the April edition of Neurology set out to determine the prevalence and associated features of demoralization. The researchers studied 96 people with Parkinson’s disease and compared them to 86 people without Parkinson’s.
Demoralization was measured by the Diagnostic Criteria for Psychosomatic Research, the Demoralization Questionnaire or the Kissane Demoralization Scale score. Study participants were counted as demoralized if any of the three scores were positive. Eighteen percent of people with Parkinson’s were demoralized as compared to eight percent of those without PD.
Depression was associated with demoralization, although interestingly there were participants who were demoralized but not depressed and those who were depressed but not demoralized. Younger unmarried participants with worse motor scores on the Unified Parkinson’s Disease Rating Scale (UPDRS) examination were at particular risk for demoralization (Koo, 2018).
The bottom line for people living with PD and care-partners is that demoralization is present in about one in five people with Parkinson’s. This symptom should not be confused with depression although it may co-occur with depression.
Tips for Addressing Demoralization
Know that younger unmarried people with PD who experience burdensome motor symptoms have a higher risk of demoralization.
Get a referral for a licensed clinical social worker or counseling psychologist.
Try cognitive behavioral therapy. More research is needed on this technique in its effectiveness with demoralization.
Do not assume that depression is the cause of demoralization.
If depression and/or apathy is present, treatment can help.
Getting a referral to a psychiatrist may be useful in select cases.
Talk to doctors and members of the care team who are positive.
Selected References
Koo BB, Chow CA, Shah DR, Khan FH, Steinberg B, Derlein D, Nalamada K, Para KS, Kakade VM, Patel AS, de Figueiredo JM, Louis ED. Demoralization in Parkinson disease. Neurology. 2018 Apr 4. pii: 10.1212/WNL.0000000000005425. doi:10.1212/WNL.0000000000005425. [Epub ahead of print] PubMed PMID: 29618626.
"You know I don’t eat in public,” Pat Merryman said to Wanda Patton, who are both heavily involved in the Columbus, OH, Parkinson’s disease (PD) community. They know people in every exercise class and attend every educational program. Pat keeps the Parkinson’s Foundation Ohio program manager’s business card with her to hand them out at every event she attends.
Pat and Wanda have different personalities, but they have many things in common — including Parkinson’s. Neither have a caregiver and both live alone. They’ve always been outspoken about having more resources and staying independent as your own caregiver, which is why they were excited to hear about the Parkinson’s Foundation Expert Briefings webinar where occupational therapist Erin Foster will address home safety and management for people with Parkinson’s who live alone.
“Support systems are critical for everyone with Parkinson’s, but especially for people who don’t have a designated caregiver,” Pat said. Looking for the support of their local Parkinson’s community, they both attend support groups and exercise classes. They have tried to establish a “circle of support” through their doctors, therapists and PD community (like the Foundation).
While they wish there was more organic community support on a regular basis, they are comfortable and confident with the level of support they have now. They actively seek additional support and get it through their local Parkinson’s Foundation chapter, which puts together educational programming and fundraisers for the PD community.
“Support from the Parkinson’s community is great, but it can’t end there,” said Pat. She makes sure that she is active in her community, attending all sorts of programs that don’t always relate to Parkinson’s.
Socialization is a key ingredient in Pat and Wanda’s recipe for managing their Parkinson’s. “Socialization, then exercise, then medication,” said Pat, quoting David Zidd, co-founder of the Parkinson’s Exercise Program Delay the Disease.
Without socializing, Pat and Wanda would have never met other people in their Parkinson’s circle of support, like the caregiver for a woman in their PD community they lovingly call their “PD Daddy.” He drives many of them around town from one group to another, giving them extra time together in the car. This time together has provided them with extra support, making a huge impact in their lives.
Wanda is not afraid to ask for help. “I couldn’t bend to clean for months before or after my surgery,” she said. She had a group of volunteers clean her house after her surgery. She’s still not sure where the volunteers came from, but she knows Pat put her in touch with them.
Challenges of Living Alone with PD
Eventually, Wanda and Pat addressed the things they are missing and wish they had along with the things they fear. Wanda had a tough time after surgery. Although she brought her Aware in Care kit to rehabilitation with her, she had trouble getting her PD medications on time. Once she returned home, a friend traveled from Florida to stay with her for two weeks because she had difficulty moving.
Wanda continues to experience the continuous PD challenge of falling due to dizziness and lightheadedness when home alone. “Some of the falls didn’t hurt anything, except my feelings,” she said, but one time she hit her head and had to crawl to bed after regaining consciousness. Wanda helped her own mother as she struggled with falls, but she doesn’t have someone living with her to help her stay safe and talk her through what to do.
“PD is a complex condition and daily self-management, preparing for the future and making treatment-related decisions is a lot for one person to consider and keep track of.”
- Erin Foster, occupational therapist
Dr. Foster references challenges for single people with Parkinson’s, including what she calls the big things: falls and potential medical emergencies, as well as the little things: day-to-day tasks like changing light bulbs and preparing meals. She acknowledges that people with PD living without a primary caregiver who wish to remain independent will require extra planning, organization and a willingness to reach out for support as needed.
“There are two sides to every story,” Pat said, reflecting on the fact that she and Wanda can’t lean on a caregiver. But this keeps Pat motivated. She doesn’t have someone to remind her to exercise and Wanda knows that if she doesn’t find the motivation nothing will happen. “We only have ourselves, so we can’t be lazy. There is no one to take care of us otherwise,” Wanda said.
With Parkinson’s disease (PD), we know how challenging it can be to manage “off” times. That’s why it is important to seek out more of what helps us feel “on.” Let’s dedicate this summer to trying new things, being grateful to those around us, creating heartfelt memories and doing what makes us happy.
1. Learn something new and share it with your friends and family.
It is essential to learn as much as you can about Parkinson’s so you can be your own best advocate. Our PD Library is a wonderful way to start or build on your knowledge. Visit Parkinson.org/library for an extensive and free collection of books, fact sheets, videos, podcasts, and more.
2. Make a list of the things you are good at.
Practice being grateful. Recall or write down things that you do well. A little self-love can go a long way in improving our mood. Learn more about Parkinson’s and mood by reading Mood: A Mind Guide to Parkinson’s Disease.
3. Give someone a hug.
Keep socially active and get involved. People who maintain friendships are less likely to experience depression, loneliness, low self-esteem and problems with eating and sleeping. Embrace a loved one today or send a virtual hug.
4. Enjoy Nature.
Spend some time outdoors. It may not even feel like a workout to the nature lover. Research has shown that walking in nature can help with depression and anxiety, which are two common non-motor symptoms for people living with Parkinson’s disease.
5. Try our guided meditation video.
Mindfulness is a practice that can be used as both a coping and prevention strategy. Whether you have two minutes or 20, mindfulness meditation can help you reduce your stress and pain. Check out our meditation video, guided by our Helpline specialist Paula Wiener, MSW, LCSW.
6. Listen to your favorite song.
People living with Parkinson’s may find moving around does not come as naturally as it once did. Music can help! Music can boost our productivity during an exercise class and help counter a freezing episode by providing a rhythmic beat to step to. Research also suggests that music therapy can reduce bradykinesia. Listen to some of your favorite tunes for some motivation.
7. Try a new recipe or diet.
There is evidence that the Mediterranean diet may help reduce blood pressure and cardiovascular disease. Emphasizing plant-based staples and healthy fats, while minimizing meat, can improve health.
8. Become a Parkinson’s Champion.
When we donate to a cause we care about, we activate parts of the brain associated with pleasure, social connection and trust. Support our mission to make life better for people with Parkinson's by hosting a do-it-yourself fundraiser as a Parkinson’s Champion. Need a summer theme? Try an ice cream social, movie night, luau or clam bake.
9. Register for your local Moving Day.
Moving Day is more than just a walk. It is a movement for change — increasing awareness, funding and understanding of a disease that affects so many of our family and friends. With 39 walks taking place around the country in 2018, we encourage you to register for a Moving Day event near you!
10. Write your My PD Story.
My PD Stories are inspirational and provide readers with hope. What can you share with others that will help them keep moving forward? You can write about any aspect of Parkinson’s that you feel comfortable sharing. Submit your My PD Story today and tell us what challenges you have overcome and what keeps you happy, healthy and hopeful.
11. Try a new exercise.
Did you know that exercise can change the brain and have a positive impact on Parkinson’s symptoms? The Parkinson’s Outcomes Project found that people with PD who engaged in at least 2.5 hours of exercise a week had a better quality of life than those who didn't exercise at all or started exercising later. Learn more about exercise and its effect on our brain.
Parkinson’s Foundation Hosts First Parkinson’s Symposium in Puerto Rico
Claudia Martinez, MD, Hispanic Outreach Coordinator at the Muhammad Ali Parkinson Center in Phoenix, AZ, a Parkinson’s Foundation Center of Excellence, did not hesitate when she was asked to join the planning committee for the first Parkinson’s Foundation conference held in the Caribbean. She knew how important this conference would be for the community and what a massive impact it would have on those living with Parkinson’s on the island.
The goal of the conference was to listen to and understand the needs of the Puerto Rico Parkinson’s disease (PD) community and provide information and resources to help people live better lives. The event also sought to establish a network for people with PD and local organizations that provide support.
The committee’s first action was to contact PD organizations and leaders in Puerto Rico. They would need to find speakers who were Spanish-speaking health professionals who understood the challenges faced by everyone in the PD community.
Weeks before the conference was to take place, Hurricane Maria hit Puerto Rico. All 3.3 million people on the island were affected. The Foundation quickly accounted for committee members and their families who lived in Puerto Rico, but many of them had lost their homes and left the country while infrastructure was being rebuilt.
While the island recovered from the category 4 hurricane, the conference committee moved ahead, choosing a new date and revising their plan. “We knew this would be a big challenge,” Dr. Martinez said. “We decided to continue because now more than never Puerto Rico needed us.”
“When we arrived in Puerto Rico on April 28, we saw the PD community’s enormous needs firsthand. It was amazing to see how people came together, and regardless of the situations they had at home, did their best to attend the conference,” said Clarissa Martinez-Rubio, PhD, co-organizer and Parkinson’s Foundation’s Director of Research and Centers Programs, who was born and raised on the island.
As caregivers, people with PD and healthcare specialists arrived at the conference room, they were welcomed by Foundation staff and a goody bag full of books and resources. Everyone was eager to participate and ready to learn.
All 250 participants grew silent as the first speakers took the stage. Ramon Rodriguez, MD, born in Puerto Rico and now working at UCF Health, and Angel Viñuela, MD, from Dorado, Puerto Rico, are two neurology specialists with a PD focus. They explained the different stages of PD.
Dr. Martinez-Rubio then spoke about the bilingual resources and services the Parkinson’s Foundation provides, such as the Helpline, Aware in Care kit, educational books and website. She also highlighted the importance of patients being active participants and advocates in their own care and within their community.
Over lunch, patients and family members enjoyed a concert while health professionals underwent a training session led by Fernando Cubillos, MD, Parkinson’s Foundation director of research programs, on neurogenic orthostatic hypotension.
Next, physical therapist Betsaida Cruz, PT, and language therapist Leslie Ledee spoke about the role of exercise and the positive impact of therapies on people with Parkinson’s. They guided the crowd through a series of exercises to help them get a better understanding of speech therapy.
Keynote speaker Alfredo Ruiz, who is living with PD, closed the symposium. Alfredo rode his stationary bike throughout his speech, sharing his powerful story of personal growth. Alfredo not only motivated the audience, but helped them see the connection between passion, persistence and empowerment.
“This is a remarkable effort and we are thankful for that,” conference participant Aura Jimenez said.
Dr. Martinez-Rubio made it a point to speak to multiple people with PD, caregivers and health professionals. “Everyone approached me with gratitude; they were immensely thankful because they felt we gave them hope,” Claudia said. “The energy in the room was powerful. I was able to feel how people were empowered and motivated to continue working for their health and their quality of life.”
Iris Ortiz was thrilled to be given the opportunity to attend. “Thank you for guiding us and giving us information about Parkinson’s and for dedicating your time to create educational activities like this conference to help improve quality of life for us,” Iris said.
“I participated in every activity and they were all a complete success,” said attendee Didi Alice Fatmagul. “I hope to see you all soon.”
The conference was made possible by support from Lundbeck and Abbvie.