“There is a large population of women out there, as well as people with Young-Onset Parkinson’s disease (YOPD), who are still of working age, that need our help,” said Susan Brister, Parkinson’s advocate from Lilburn, GA. “The Parkinson’s Foundation has found a niche in reaching these communities to offer the resources they need.”
Susan lives with YOPD and hopes that her appearance in “Better Lives. Together .” the Parkinson’s Foundation public service announcement (PSA) will spread awareness about Parkinson’s disease (PD), especially among underrepresented groups.
In the 16 years since Susan was diagnosed, she has learned to adapt to the challenges of Parkinson’s with grace and a healthy dose of humor.
“Parkinson’s taught me to take life a little less seriously, and that living with a disease with no cure doesn't have to be as bad as it sounds,” said Susan. “Parkinson's will change your trajectory in life but doesn't have to define who you are.”
When Susan was 34, working in a stressful corporate job with a newborn and a two-year-old at home, she noticed that something was not right with her fine motor skills.
“I remember ordering wide grip pens from my office’s supply company because my writing has gotten so bad and so small,” said Susan. “I had my second child in 2004, and when it came time to write thank you cards for baby shower gifts, I couldn't do it. My writing had become illegible. I had to hire a couple of high school girls to write the cards for me.”
Shortly after that, Susan noted that she was struggling to perform simple tasks like scrambling eggs or brushing her teeth. She decided it was time to seek out a neurologist.
“It was my seventh wedding anniversary in 2005 when the doctor told me ‘I think you've got Parkinson's disease,’” said Susan. “My mind immediately went to a vison of an elderly person shaking with tremors and I didn't want to think about it, but the doctor said, ‘I encourage you to get another opinion.’”
Shortly thereafter, Susan’s diagnosis was confirmed by a second doctor, and she began to consider what lifestyle changes she would need to make.
“My manager gave me a role that was more flexible and less demanding in terms of life-work balance, but at the same time, less responsibility also meant less pay and I was used to having the opposite. I was always proud of being a strong female leader in my industry, so it was quite difficult to accept.”
By 2009, managing work with PD and two young daughters had become untenable. “The stress exacerbated all my symptoms,” said Susan. Turning in her business cards was especially hard: “I felt like I lost my identity,” said Susan.
Instead of being discouraged, Susan, now a full time stay at home mom, had new business cards printed. “The cards had the job title ‘Best Mom in the World,’” said Susan. “It was my tagline because it’s what my daughters always call me.”
Today, Susan’s independent daughters are quick to help with her Parkinson’s-related challenges. “My youngest one has nice penmanship, so she helps with writing letters or paperwork at the doctor’s office. My older daughter has an intuitive sense of when I'm getting frustrated with my ability to explain something to someone like a doctor or mechanic. She’ll just say ‘Mom, hold on, I'll do this for you,’ and she'll step up and explain what I’ve been struggling to articulate. She takes the ball and runs with it. I'm really proud of both of my daughters for that support.”
Susan stays active to keep her PD symptoms in check through yoga alongside a trainer and taking evening walks with her husband. “It's our bonding time,” she said. Susan also enjoys spending time with her family watching her younger daughter play softball and her older daughter play volleyball.
Susan also does her part to support young women with PD, offering a listening ear to those considering deep brain stimulation (DBS) surgery. “My social worker contact will call me and say, ‘hey Susan someone is contemplating getting surgery, are you willing to talk to them?’ My first response is always ‘yes, don't even ask, just give my number,” she said. “I didn't have a real person to talk to when I was preparing for surgery in 2017, and if I did, it would have been an elderly man, which wouldn’t have been helpful for me.”
Susan’s advice to people who are newly diagnosed with PD is straightforward. “It gets easier to talk about it and deal with the longer you have. In the beginning it is very emotional because you think the worst, but get medicated, get a good doctor and take your medications on time and you will improve your quality of life.”
I started racing motorcycles in 1972, and aside from injuries, Parkinson’s disease (PD) and other setbacks, I'm still racing today! I just got home in Florida from Talladega, where I finished third in my class at the age of 65. Even though the head injuries may have contributed to my PD, at 57 years old I just couldn't stay away from the adrenaline rush of the speed, thrill and great people
I had deep brain surgery (DBS) in 2016. Even though it is not a cure, I couldn't even have considered my return to racing before. Drug free, and other than my slurred speech, I feel great!
My life has changed forever, and my PD is progressing rapidly, but with the DBS surgery, my quality of life is remarkable.
The goal of telling my story is to help other folks who are close to giving up or feel there is no life after a PD diagnosis, have some hope and inspiration. Thanks for the opportunity to tell my story.
When Karen Anderson’s husband, Roger, went into the hospital to undergo surgery for a herniated disc, it should have been a fairly straightforward procedure except for one thing, he had Parkinson’s disease. Like any spouse, she was nervous about the operation but assumed that her husband was in good hands.
Karen was not prepared for what was to come. After explaining Roger’s medication schedule to the medical team, she was astonished to find out how unaware they were about this part of his care. With each shift change, she had to go over his medication schedule with every new doctor and nurse. And when Karen wasn’t by her husband’s side, he didn’t get his medication on time. He was even given a drug not meant for Parkinson’s patients.
As time went on, the situation got worse—Roger suffered hallucinations and couldn’t communicate with the doctor. “It was a horrible nightmare that I could not wake up from,” recalls Karen of that alarming experience. “Here I was, the distraught spouse trying to fight for my husband’s life—and I had to constantly find ways to care for him.”
Therefore, if you ask Karen how she became an advocate for people with Parkinson’s, she’ll tell you she didn’t have a choice. She’s been on this road for more than twenty years with her husband, who was diagnosed with Parkinson’s at the age of 47. As a full-time caregiver, she’s advocated for her husband every step of the journey. Looking forward, she plans to make sure every person with Parkinson’s has an advocate for good care when they need it the most—in the hospital.
When Roger had to go back in the hospital for surgery but this time Karen was proactive. She consulted with his surgeon beforehand and made copies of his medication schedule for everyone on staff.
“The Aware in Care kit is a life-saver; as a person with Parkinson’s or a caregiver, you have a role to play in advocating for your own quality care. Make sure you carry your medication list with you and be aware of the medications you take and what happens if you don’t take them,” stresses Karen.
*Roger ended his battle with Parkinson’s, but Karen continues to offer her support to caregivers in her area.
How To Stay Safe During a Hospitalization with Parkinson’s
Whether planned or an emergency, hospitalization may be necessary during the COVID-19 pandemic. If you or your loved one is living with Parkinson’s disease (PD), the below tips can help you have a safe hospital experience.
1. Be prepared.
Pick a hospital ahead of time so you do not scramble to find one during a medical emergency. A safe hospital is one that will make sure you get your PD medications on time and is not overwhelmed by COVID-19 patients. Here are some questions you can ask a hospital’s patient advocate or receptionist, or consult the hospital website ahead of time:
Does the hospital have staff trained in Parkinson's disease management?
Does the hospital have a neurologist available for consultation?
Does the hospital stock a wide range of Parkinson's medications in the pharmacy?
What is the rule on Parkinson's patients taking their own medications?
What are the COVID-19 regulations of the hospital of choice? Are care partners allowed to enter with the patient?
2. Utilize telemedicine to decide if you should go to the hospital.
If you or a loved one are experiencing a medical issue, but are not sure it requires hospitalization, make a virtual appointment with your primary physician, movement disorder specialist or neurologist.
If your practitioner is not available, schedule a telehealth appointment with an urgent care center near you. Urgent care healthcare providers can give you a better understanding of whether you should go to the hospital.
3. Once hospitalized, advocate for yourself to get your medication on time, every time.
Hospitals and nursing staff are extremely busy right now. It is possible that getting your medications on time might be more difficult than usual. People with Parkinson's should watch for these common medication errors:
Medications may be missed entirely by error, especially if the reason you are hospitlizated is not directly related to Parkinson's. Immediately mention Parkinson's upon being hospitalized and communicate exactly when you need your next dose of medication.
Medication may be omitted, or withheld intentionally before surgery or if swallowing is severely impaired. Parkinson's medications should almost never be withheld. Call your neurologist if medications are being withheld.
Medications may be delayed, or not distributed exactly as you take them at home. Make sure nurses understand that you need your medication as scheduled, and that the one-hour window they usually use in the hospital is not acceptable for people with PD. Fill out this Medication Form to communicate your unique medication schedule.
Medications may be substituted improperly, typically if they don't have exactly what you take in the hospital pharmacy. Make sure they don't change immediate release for continuous, or generic for name brand.
Pay particular attention if you take Rytary, which contains special beads designed to dissolve at different rates within the stomach and the intestines. If the hospital will let you continue to take your home supply of medication, this is best. If they insist on substituting, share this article, which Includes the FDA chart on general (approximate) recommendations for dosage switching.
Contraindicated medications can be prescribed or administered. Share the Fact Sheet for Nurses, a document that outlines contraindicated medications in Parkinson's with safe alternatives.
4. Ask for help if you aren't getting the care you need while In the hospital
If you or a loved one are admitted to the hospital and are not getting the care you need, you can ask to talk to any of the following hospital staff members who may be able to advocate on your behalf:
Patient Advocate: A health care professional who looks out for the best interests of an individual patient as well as groups of patients.
Hospital Social Worker: A professional who serves to assist patients in dealing with the sometimes overwhelming effects of hospitalization, and helping patients and their families navigate the process of illness and injury, from hospitalization to recovery.
Complaints Officer: The person responsible for ensuring that stresses are minimized and that both parties find the process transparent, informative and thorough while complying fully with policy, and thus with legislation.
Quality Improvement Coordinator: Registered nurses (RNs) who coordinate specific review processes as part of a hospital or clinic.
When hospitalized, show nurses your signed Hospitalization Letter, explaining that you need your medications on time, every time. If you have the magnet in your Aware in Care kit, post it somewhere visible in your room for staff to see.
For more information, contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) or Helpline@Parkinson.org.
Research Study Makes Case for Palliative Care Early in Parkinson's Treatment
When many first hear the term palliative care, they can misinterpret it as end of life care. However, palliative care is an option for anyone with Parkinson's disease (PD) to receive additional support, even at the point of diagnosis. It can help at any PD stage, specifically with treating pain management; encompassing spiritual care and helping people with Parkinson’s and their family navigate emotional challenges. It can also compassionately create a safe space for one to explore, and ultimately share, their end-of-life directives.
What if that level of holistic care wasn’t reserved for the final weeks of life, but rather was incorporated into standard care in the PD population? How might that impact the quality of life and symptom burden for people with Parkinson’s and their caregiver?
Recently published in the journal, JAMA Neurology, “Comparison of Integrated Outpatient Palliative Care With Standard Care in Patients With Parkinson Disease and Related Disorders: A Randomized Clinical Trial” (Kluger et al., 2020), a one-year comparative study investigated palliative care and its effects on patient and caregiver.
Study participants included 210 patients (135 men, 75 women), predominantly white, married, college-educated, with an average age of mid-60s. The caregiver participants were composed of 175 people (47 men, 128 women) — 143 of whom were the patients’ spouse. The study was conducted at three academic medical centers: University of Alberta (Alberta, Canada), the University of Colorado (Aurora, CO), and the University of California (San Francisco, CA).
Participants were randomly assigned to receive one of two courses of treatment:
The standard of care option: provided by a neurologist and a primary care physician.
The integrated palliative care option: included the standard of care, plus a chaplain, a social worker and a nurse using a palliative care checklist — who could also access additional guidance from a palliative medicine specialist. Palliative care visits were performed either in person or by telemedicine every three months.
The study primarily measured a change in quality of life of patient and caregiver burden. Also measured were: symptom burden; patient and caregiver mood (anxiety and depression); patient and caregiver grief and spiritual well-being; patient and caregiver patterns of health care use; motor symptoms; and, cognitive functioning.
Results
Comparing participants receiving palliative care with those who received standard care alone, after six months:
Patients receiving palliative care had better quality of life
Patients receiving palliative care had better symptom burden
Patients receiving palliative care experienced less grief
Patients receiving palliative care had better rates of completing their Advanced Directive Completion (end-of-life preferences)
Patients receiving palliative care had statistically and clinically significant benefit in motor symptoms
Comparing palliative care and standard of care caregivers:
Palliative care caregivers experienced less anxiety
No other significant differences were found in caregiver burden
What Does It Mean?
This study found that introducing palliative care significantly improves quality of life for people with Parkinson’s — not just emotionally, but also physically. The study authors share that while these motor improvements were unexpected, they may reflect, “an unanticipated benefit of our palliative care team’s general goal of encouraging activities that promoted joy, meaning and connection.” Additionally, the caregivers in the palliative care group also experienced less anxiety themselves — with no increase in caregiver burden. Interestingly, not a single outcome measure favored receiving standard care alone.
Of note, the study’s main limitation was its lack of diversity among study participants; more than 70% of the participants were white. Incorporating a far more diverse population needs to be included as this important research moves forward.
At its core, palliative care is a caring, holistic approach that optimizes quality of life for as long as possible. Loved ones and caregivers benefit as well, often transforming an otherwise frightening, overwhelming and painful journey into a sacred passage. Introducing this level of care and connection could make all the difference in quality of life.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more by visiting these Parkinson’s Foundation resources, or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to your Parkinson’s questions.
Bloem, B. R., Trenkwalder, C., Sanchez-Ferro, A., Kalia, L. V., Alcalay, R., Chiang, H. L., . . . Papa, S. M. (2021). COVID-19 Vaccination for Persons with Parkinson's Disease: Light at the End of the Tunnel? J Parkinsons Dis, 11(1), 3-8. doi:10.3233/JPD-212573
Pardi, N., Hogan, M. J., Porter, F. W., & Weissman, D. (2018). mRNA vaccines - a new era in vaccinology. Nat Rev Drug Discov, 17(4), 261-279. doi:10.1038/nrd.2017.243
Shimabukuro, T., & Nair, N. (2021). Allergic Reactions Including Anaphylaxis After Receipt of the First Dose of Pfizer-BioNTech COVID-19 Vaccine. JAMA. doi:10.1001/jama.2021.0600
Team, C. C.-R., Food, & Drug, A. (2021). Allergic Reactions Including Anaphylaxis After Receipt of the First Dose of Moderna COVID-19 Vaccine - United States, December 21, 2020-January 10, 2021. MMWR Morb Mortal Wkly Rep, 70(4), 125-129. doi:10.15585/mmwr.mm7004e1
Coping with COVID-19: Survey Results from People with Parkinson’s During the Pandemic
During the time of COVID-19 are people with Parkinson’s disease (PD) frequently experiencing anxiety? Are they using telehealth services to see their medical team? Are they exercising less or more often than before the pandemic? A Parkinson’s Foundation survey sought to answer these questions and more.
As the COVID-19 pandemic continues, little is known about its impact on the health and day-to-day activities of people with Parkinson’s. The Parkinson’s Foundation and Columbia University Parkinson’s Disease Center of Excellence administered a survey to people with Parkinson’s to provide guidance to clinicians, policy makers and the PD community on how COVID-19 has transformed the lives of people with Parkinson’s and their access to care.
“People with Parkinson’s encounter numerous difficulties during normal times, especially when it comes to receiving proper PD medications when admitted to hospitals,” said Phil Gee, Parkinson's Foundation People with Parkinson’s Advisory Council Member. “I am grateful that the Parkinson’s Foundation initiated this COVID-19 survey to capture how people with Parkinson’s disease are coping during this pandemic.”
What did the survey measure?
This survey was administered between May 2020 and June 2020, receiving 1,342 completed responses from people with PD.
The survey asked people with PD about their:
COVID-19 health status
Emotional health
Attitudes and practices related to changes in their routine since the pandemic began
Telehealth use and satisfaction
Results
Almost all survey respondents came from within the U.S. Respondents live across states that experienced all levels of COVID-19 infection. The average age for respondents was 71, and the average time they have lived with Parkinson’s was seven years.
Diagnosed with COVID-19 and Parkinson’s
Only 17 (1.3%) survey respondents with PD reported a COVID-19 diagnosis by a health provider, five of which had a test to confirm the diagnosis. Within this small group, the most reported COVID-19 symptoms included: fatigue (71%), muscle pain (59%), body aches (59%), cough (63%), headache (47%) and shortness of breath (47%). COVID-19 symptoms lasted an average of 13.5 days.
Mood
More than half of respondents experienced nervousness or anxiety (67%), feeling down or depressed (51%), reduced interest or pleasure in doing things (54%) or sleep disturbances (66%) in the six weeks prior to the survey. Women were more likely to experience these symptoms than men, with the exception of experiencing a reduced interest or pleasure in doing things.
Respondents who reported experiencing frequent mood disruptions (anxiety, worry, depression, reduced interest, sleep disturbances or isolation) during the pandemic where asked to explain why.
Anxiety was most often attributed to the fear of respondents getting infected (22%) and not knowing when COVID-19 would be resolved (13%).
Depression was most often attributed to the inability to see or have physical contact with family and friends (16%) and having a history a depression unrelated to COVID-19 (12%).
Loss of interest was most often attributed to not leaving the house (14%), having lost interest and apathy prior to COVID-19 (14%) and hopelessness or negative feelings about the future (13%).
Sleep problems were attributed to problems not related to COVID-19 (36%) or worry related to COVID-19 (34%).
Physical and Social Activities
Most people with PD (85%) felt that their personal life had changed during the COVID-19 pandemic. Nearly half of people with Parkinson’s noticed some negative change in their Parkinson’s symptoms during the pandemic, but most people with PD said they had no negative change in their relationship with members of their household (65%) or the frequency of their communication with others (75%).
Almost half of People with Parkinson’s (45%) reported reduced hours of exercise, and 73% reported a reduction in activities outside of their home. However, most respondents reported that activities were available online (82%), among whom 92% participated. The most common virtual sessions attended included exercise/wellness class (58%), support groups (32%), recreational classes (13%, religious services (46%), educational events (36%) and other (22%).
As a response to COVID-19, to help ease the challenges of physical distancing, the Parkinson’s Foundation launched PD Health @ Home ― an interactive series of virtual events designed for the Parkinson’s community. To date, more than 230,800 participants have participated in the virtual programming. Currently, PD Health hosts innovative weekly expert-led educational webinars, guided mindfulness sessions and tailored fitness videos. See all upcoming PD Health @ Home events.
Telehealth
This survey measured the use of telehealth services for people with PD during COVID-19. Telehealth use increased from 10% prior to the pandemic to 64% during the pandemic. Those with higher income and higher education were associated with telehealth use.
People used telehealth most often for a doctor’s appointment compared to other health therapies (mental health, physical therapy, occupational therapy and speech and language pathology). Among those who had utilized services, almost half (46%) preferred to continue using telehealth always or sometimes after the coronavirus outbreak had ended. However, having received support or instruction for telehealth and having a care partner, friend, or family member help with the telehealth visit increased the likelihood of using telehealth after the pandemic ended.
Key Takeaways
While better understanding the COVID-19 experiences of people with PD, looking at the bigger picture, survey results suggest several urgent unmet community needs.
Telemedicine or telehealth: the distribution of health-related services and information using technology. Prepare for your next telemedicine appointment with this blog article.
The most notable shift within the PD community is the widespread use of telehealth. Telehealth use significantly increased 54% during the COVID-19 pandemic. However, results made it clear that the PD community urgently needs the expansion of telehealth services to include additional physical, occupational psychological and speech therapies, along with more support for how to use telehealth services and better reaching underserved (low income) populations.
New strategies must be developed to make telemedicine more available to all prospective users. The COVID-19 pandemic has differentially impacted people from lower socioeconomic status and extending telemedicine services to economically disadvantaged populations may help reduce disparities.
Depression and anxiety symptoms were prevalent in people with PD during the pandemic. Household income and employment status were found to be important factors in predicting mood disturbances. Our data strongly suggest disparities across socioeconomic status in people with PD during the COVID-19 pandemic, with those of lower income far more affected by financial and employment uncertainties. Interestingly, factors such as location and local COVID-19 rates were not associated with mood symptoms. This suggests that communities deemed at lower risk of spread are not immune from the overwhelming influence of the COVID-19 pandemic on everyday life.
We must further explore the relationship between PD and COVID-19. Given the uncertainty of how long the hardship of COVID-19 and social distancing requirements may persist, we must identify ways to help the PD community throughout this period. Gathering accurate data on COVID-19 risk among people with PD and improving telemedicine by providing a wider range of services and making it more accessible is essential.
Symptom Management: Is it PD, Medication or Aging?
Shakiness, slowness and stiffness – key Parkinson’s disease (PD) motor symptom challenges – can be frustrating. Your PD doctor and other PD healthcare experts, such as an occupational therapist (OT), can offer management strategies to ease movement difficulties. Addressing movement issues early can keep you living your best life.
This article is based on a Parkinson’s Foundation Expert Briefing series on Symptom Management: Is it PD, Medication or Aging? “Exploring Motor Symptoms Co-Management: Occupational Therapy and Neurology” was presented by Lisa Warren, MHS, OTR/L, Occupational Therapist and Rehabilitation Manager, University of Florida Health Rehab, Norman Fixel Institute for Neurological Diseases, a Parkinson’s Foundation Center of Excellence; Parkinson’s Foundation National Medical Advisor Dr. Michael S. Okun, Adelaide Lackner Professor, Chair of Neurology and Executive Director Norman Fixel Institute; and Gretchen Rosswurm, 2020 Chair of the Parkinson's Foundation People with Parkinson's Council.
Cardinal PD Motor Symptoms
While there is no specific test to identify Parkinson’s disease, there are telltale primary – or cardinal – motor signs. These include:
bradykinesia, the medical term for slowness of movement.
These symptoms stem from a drop in the brain’s production of the chemical dopamine. When considering a PD diagnosis, a neurologist who has PD expertise looks for bradykinesia accompanied by either stiffness or tremor.
Co-Managing Movement Issues
Both your neurologist and occupational therapist use different methods to tackle motor difficulties. Integrating multidisciplinary movement therapies can help you move easier.
Bradykinesia
We all tend to move a bit more slowly as we age. Bradykinesia – PD-associated physical slowness – is more unpredictable and exaggerated than typical age-related slowness. It can manifest as difficulty initiating movement. Or you may experience unusual stillness, decreased facial expression or need more time to complete daily tasks.
Your doctor may review the medications you are taking to ensure optimal delivery or might recommend taking your medications up to an hour before tasks that require dexterity.
An occupational therapist may recommend allowing extra time to accomplish tasks or can suggest activities that boost dexterity, such as shuffling and dealing cards. And remember, it’s OK to choose accuracy over speed. Give yourself permission to take the time you need.
The formula to living well with Parkinson’s is different for everyone. Be flexible and commit to working with your healthcare team to discover what works for you.
Tremor
People who live with Parkinson’s generally experience tremor as a shaky hands, legs or chin, often occurring at rest. Tremor typically affects one side of the body. Severity can fluctuate throughout the day – and from day to day.
Doctors often treat resting tremor with combination carbidopa/levodopa medication therapy. This temporarily replenishes dopamine to ease movement. But more than 20 percent of people living with PD can experience medication-resistant tremor. In these cases, a movement disorder specialist can recommend other therapies, including deep brain stimulation (DBS) – a procedure where electrodes are implanted into certain areas of the brain and connected to an implanted pulse generator to block nerve signals that make movement difficult.
Emotional and physical stress can also increase tremors. An occupational therapist can recommend therapies to combat your specific triggers – from meditation and creating a comfortable sleeping environment to adapting a favorite hobby.
Check out the PD Health @ Home online program called Mindfulness Mondays to discover ways to decompress.
Rigidity
This PD-related stiffness can occur throughout the body. Rigidity may cause painful cramping, such as dystonia – muscle spasms and clenching associated with Parkinson’s. Stiffness can occur on one or both sides of the body.
One of the best things you can do to combat rigidity is to take your medication on time, every time. If that isn’t working, your doctor may augment your medications or consider Botulinum toxin injections, which can sometimes relax overactive muscles.
Stress management and regular exercise can also ease rigidity and improve many other symptoms of Parkinson’s. An occupational therapist can recommend stretches specific to your needs. Warm up, then stretch your muscles before putting them to work. Be sure to talk to your doctor before starting any new exercise.
Stretch frequently, minimize stress and consider practicing yoga. The Parkinson’s Foundation offers online PD Health @Home Fitness Fridays to help you stay active at home.
Postural Instability
It's important to remain active with Parkinson's. However, people who live with PD can experience balance changes that increase the risk for falls and injury. Your healthcare team can give you strategies to keep moving safely.
Your movement disorder neurologist should perform a balance test that involves your shoulders at every visit. Your reaction to the test helps your doctor determine instability issues and potential treatment.
Integrate early, consistent, year-round physical and occupational therapy and exercise that focuses on balance. Ensure your home is free of clutter. Make it safe and easy to navigate. Minimize multitasking when you are walking; focus on walking and moving safely. Take big steps and walk with confidence.
Explore the Parkinson’s Foundation publication Fitness Counts to learn posture and balance tips and safe ways to get up from a fall.
Find Expert Care
Call the Parkinson's Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org to find skilled Parkinson’s healthcare – including occupational, physical and speech therapy – in your area.
Weeding Through the Haze: People with Parkinson’s Share Medical Cannabis Experiences
Medical cannabis (or marijuana) is a complementary and alternative therapy of high interest for the Parkinson’s disease (PD) community. The Parkinson’s Foundation believes that this topic should be better understood, and has committed to doing so with a medical marijuana convening and its published guidelines, new articles, interviewing experts on our podcast and most recently, conducting a survey to better understand cannabis use among the PD community.
In the U.S., cannabis has become more widely available for medical and recreational use. However, little is known about the attitudes towards, and experiences with, cannabis use among those living with PD. To address this shortcoming, the Parkinson’s Foundation distributed a survey, Weeding Through the Haze: A Survey on Cannabis Use Among People Living with Parkinson’s, Disease in the U.S., to 7,607 people with PD in January 2020 and analyzed the 1,064 complete responses we received.
“It is important to understand how people with Parkinson’s disease are using cannabis, and whether they are basing their use on evidence-based recommendations or trial and error. This survey will help shed light on the community viewpoints and experiences surrounding cannabis use for Parkinson’s disease symptoms,” said Megan Feeney, MPH, Parkinson’s Foundation Associate Director of Community Engagement and survey lead.
Medical Cannabis and Parkinson’s
Managing Parkinson’s is complex. As the neurodegenerative disease progresses, so do its symptoms for most. Many symptoms, especially non-motor symptoms, are not effectively addressed with current medications. Many people with Parkinson’s have looked to medical cannabis to provide some relief. However, more research is needed to prove if and how PD symptoms are relieved when using cannabis, and if so, what type of cannabis and what dosage are most effective and safe for the consumer.
Nevertheless, there is an increasing interest in the use of medical cannabis. Currently, 47 of 50 states in the U.S. permit the sale or consumption of hemp-sourced cannabidiol (CBD) products with less than 0.3% tetrahydrocannabinol (THC), while 35 of 50 states have approved marijuana for medicinal purposes and 15 of 50 states permit recreational use of marijuana. Today, broad numbers of people with PD have access to cannabis.
Survey Results
The 1,064 survey respondents came from 49 states. The average age for respondents was 71, and the average time they have lived with Parkinson’s is seven years. The survey asked specific questions about cannabis use ― from symptom management to motivation for use and side effects ― and questions for those who do not use cannabis and why.
Experiences with Cannabis and Managing PD
Of the respondents who consumed cannabis:
25% used cannabis within the previous six months.
57% learned about cannabis use from the internet, friends or other people with PD.
64% had not received a cannabis recommendation from a licensed doctor or provider.
56% were not provided any information on how to use cannabis (such as dosage, type and frequency of use).
Most consumers reported their most common time of cannabis use is either in the evening or at bedtime.
Interestingly, 23% of consumers stated they stopped cannabis use in the previous six months, primarily due to a lack of symptom improvement. Of note, 76% of respondents did not use cannabis, primarily because there was a lack of scientific evidence supporting any benefits.
Experiences with Cannabis and Managing PD Symptoms
Among respondents, cannabis was used to treat motor and non-motor symptoms. When asked about associated symptom relief, most consumers reported that cannabis use led to a moderate or considerable improvement in the severity of anxiety, pain, sleep disorders, stiffness and tremor. Overall use and the level to which cannabis was reported to address motor and non-motor symptoms varied widely.
Negative Side Effects
Less than 13% of consumers reported negative side effects from cannabis use. We also asked non-consumers of cannabis if they had experienced any previous negative cannabis experience. Of these, about half reported negative side effects.
Combined, both groups listed their negative side effects as an increase in anxiety (30%), impaired coordination (20%), dizziness (20%) and “other reasons” (38%), which included sleepiness, confusion, worsening orthostatic hypotension.
PD Medication and Cannabis Consumption
Cannabis consumers rated non-motor prescription medications as less efficacious than non-consumers. Among all consumers, 85% reported that cannabis use had no impact on their prescription medication usage, and 89% said cannabis was not a replacement for their PD prescription medications.
Clinical Trials
Among all who responded, 82% were interested in learning more information about a clinical trial exploring the impact of cannabis on PD symptoms, and 62% were interested in enrolling in a clinical trial.
Key Takeaways
While better understanding cannabis experiences of people with PD, looking at the bigger picture, survey results show that:
A knowledge gap among people living with PD, which may be impacting their decisions about cannabis use, as a large portion of consumers reported not knowing the type, brand or dosage of cannabis they primarily use.
Among some consumers, reported cannabis use may have been beneficial for motor and non-motor PD symptoms including anxiety, pain, sleep disorders, stiffness and tremor. This is consistent with other research studies.
One in five survey respondents are current cannabis consumers.
Cannabis use did not have an impact on PD prescription medications.
Cannabis consumers see the limited effectiveness of cannabis for symptom management. Most consumers recognize that cannabis is not a substitute for their PD medications.
Learn More
Learn more about Parkinson’s and medical cannabis in the below resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636):
New Study: Parkinson's Foundation Center of Excellence Sheds Light on COVID Vaccine and Parkinson's
Life as we knew it changed on January 30, 2020. That was that day when the World Health Organization (WHO) officially declared the COVID-19 outbreak to be a Public Health Emergency of International Concern. Caused by Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2), COVID-19 can result in serious, life-threatening complications, regardless of one’s age, race, health status, geographical location, or socio-economic income and including people with Parkinson’s disease. In this article, we’ll examine a new study from a Parkinson’s Foundation Center of Excellence, Nijmegen Parkinson’s Center in the Netherlands, which recommends the COVID-19 vaccination for people with Parkinson’s, unless there is a specific contraindication.
Overall, we know that people with PD who contract COVID-19 are more likely to experience severe respiratory issues and have more difficulty recovering from COVID-19 – particularly among those with advanced PD, compared to people who do not have PD. Another additional concern for those with PD is that COVID-19 may trigger a worsening of both motor and non-motor symptoms and also may increase the risks of mental health challenges. These mental health challenges are known to be higher for people with PD living under social isolation, higher stress levels and without adequate exercise.
Expert commentary recently published in the Journal of Parkinson’s Disease, titled, “COVID-19 Vaccination for Persons with Parkinson's Disease: Light at the End of the Tunnel?” (Bloem et al., 2021), tackles the question of getting the COVID-19 vaccine for people with Parkinson’s using a scientific, evidence-based approach. Bas Bloem, MD, PhD, works at the Radboud University Nijmegen Medical Centre, a Parkinson’s Foundation Center of Excellence. The Nijmegen Parkinson Center is one 14 international Centers of Excellence and 33 others in the United States.
These experts closely studied the development and approval processes – including the thorough analyses of completed Phase III data as provided by vaccine developers in a transparent process with peer-reviewed publication of the full data sets. In other words, Bloem et al. (2021) were privy to all of the actual data, not just cherry-picked data. Additional COVID-19 vaccination information was provided by the Scientific Issues Committee (IPMDS-SIC) of the International Parkinson and Movement Disorder Society.
Results
Compared to the general population, the risk of SARS-CoV-2 infection causing serious, life-threatening disease seems higher for people living with PD, at least among those with more advanced disease.
The approved mRNA-based vaccines are not known or expected to interact with the PD neurodegenerative process.
COVID-19 vaccination is not known to interfere with the current PD therapies.
The types or incidence of side effects of these vaccines in persons with PD were observed to be no different than in the general population – pain and irritation at the injection site, fatigue, muscle pain, headache, low fever/chills.
The vaccines were observed to be safe for older adults, however caution is needed for the specific subgroup of very frail and terminally ill elderly persons with PD living in long-term care facilities; or for people with PD who have additional chronic illnesses.
Taken together, (Bloem et al., 2021) recommend COVID-19 vaccination with approved vaccines for persons with PD, unless there is a specific contraindication.
Vaccinated persons with PD must continue to comply with the public health guidelines to reduce exposure and to possibly reduce transmission of COVID-19.
Insights may change, conscious monitoring of newly emerging data from both trials and real-life vaccination programs is critical.
The authors did not examine the recently US FDA approved vaccine produced by Johnson & Johnson so persons with Parkinson’s and family members should not extrapolate the data from this recent study to apply to the new single dose vaccine. Hopefully more information on this approach will be available soon.
Key Facts about COVID-19 Vaccines
1. Vaccines do not use the live virus that causes COVID-19. The new Johnson & Johnson vaccine uses DNA and not RNA and uses an adenovirus (not the corona virus) to deliver the information necessary to protect against COVID-19.
2. Vaccines cannot give someone COVID-19
3. Vaccines do not interact or affect our DNA in any way
4. Vaccines never enter the nucleus of the cell – which is where our DNA (genetic material) is stored
What Does It Mean?
Both the Pfizer/BioNTech and Moderna mRNA vaccines met the high standards required for use authorization after rigorous data scrutiny and validation – as required in the normal US FDA vaccine approval process. This process is essential in determining not only safety and efficacy, but also that the vaccine benefits outweigh its risks. Today, in the United States, the death toll from COVID-19 topped 500,000 people; worldwide, it has been associated with more than 2,462,000 deaths.
Based upon the available data, the incidence of side effects in persons with PD have not been different than in the general population. The approved mRNA-based vaccines, Pfizer/BioNTech and Moderna:
do not interact with the neurodegenerative process in PD
have been shown to be highly effective in preventing the severe and even the mild forms of the disease
help the body more rapidly clear the infection. High efficacy (>90%) has been demonstrated regardless of race, gender, age, and medical conditions. How big of deal is greater than 90 percent efficacy? During the 2019-20 flu season in the United States, the overall effectiveness of the seasonal flu vaccine in children and adults was about 45 percent.
In their MDS COVID-19 Vaccine Statement for Patients, the International Parkinson and Movement Disorder Society and its Scientific Issues Committee included the following, “All considered, we have encouraged our community of health specialists to recommend COVID-19 vaccination to their patients with PD (or their responsible caregivers) unless there is a specific reason that precludes administration. We also recommend that patients come forward to seek the vaccine as quickly as it is available.”
Finally, as stated by the experts, Bloem et al., (2021), even after being fully vaccinated, it is important that persons with PD continue complying with the public health guidelines to reduce exposure and transmission of COVID-19 as recommended by WHO and the CDC.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about Covid-19 and PD by vising the below Parkinson’s Foundation resources, or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to all your Parkinson’s questions.
Bloem, B. R., Trenkwalder, C., Sanchez-Ferro, A., Kalia, L. V., Alcalay, R., Chiang, H. L., . . . Papa, S. M. (2021). COVID-19 Vaccination for Persons with Parkinson's Disease: Light at the End of the Tunnel? J Parkinsons Dis, 11(1), 3-8. doi:10.3233/JPD-212573
Pardi, N., Hogan, M. J., Porter, F. W., & Weissman, D. (2018). mRNA vaccines - a new era in vaccinology. Nat Rev Drug Discov, 17(4), 261-279. doi:10.1038/nrd.2017.243
Shimabukuro, T., & Nair, N. (2021). Allergic Reactions Including Anaphylaxis After Receipt of the First Dose of Pfizer-BioNTech COVID-19 Vaccine. JAMA. doi:10.1001/jama.2021.0600
Team, C. C.-R., Food, & Drug, A. (2021). Allergic Reactions Including Anaphylaxis After Receipt of the First Dose of Moderna COVID-19 Vaccine - United States, December 21, 2020-January 10, 2021. MMWR Morb Mortal Wkly Rep, 70(4), 125-129. doi:10.15585/mmwr.mm7004e1
While it’s known as a movement disorder, people who live with Parkinson’s disease (PD) experience many non-movement, or non-motor, symptoms too – though not all of them are related to the disease. Peripheral neuropathy, or nervous system damage, fatigue and GI issues are common PD challenges that can also stem from other causes. Working with your doctor to identify the source of your symptoms is key to effective treatment.
This article is based on the Parkinson’s Foundation Expert Briefing series; Symptom Management: Is it PD, Medication or Aging? Exploring Non-motor Symptoms: Neuropathy, Fatigue, GI Issues presented by Ellen Walter, Nurse Practitioner, Cleveland Clinic, and Steven Swank, Clinical Pharmacist, University of Kansas Medical Center. Both organizations are Parkinson’s Foundation Centers of Excellence.
Causes of neuropathy, fatigue and impaired gastrointestinal (GI) function during the course of PD can be wide-ranging – and include everything from normal aging to medication side effects.
With any health challenge, it’s recommended to log symptoms. This can help your doctor rule out potential causes. When did symptoms start? Are there any patterns?
Neuropathy
Peripheral neuropathy describes damage to the nerves that carry messages between the brain and spinal cord. Although they may not know it by name, people who live with PD are more likely than others to experience peripheral neuropathy. It can cause pain, numbness, tingling or muscle weakness, or greater sensitivity in certain areas.
This condition can also cause loss of coordination or sometimes make people feel as if they're wearing gloves or socks. Due to increased risk for walking problems and falls, a falls risk assessment is critical for anyone living with Parkinson’s who experiences peripheral neuropathy in their legs.
Possible Causes
While there can be a connection to peripheral neuropathy and Parkinson’s medications, research shows people with PD can have neuropathy even before beginning treatment.
Other types of neuropathy are also more common in PD, including:
neurogenic orthostatic hypotension –is a sharp drop in blood pressure that happens when a person gets up from bed or from a chair, causing dizziness or even loss of consciousness
gastroparesis, a slowed down or delayed emptying of the gut
damage to nerves in the bladder can cause urinary incontinence
Neuropathy can also be related to more serious issues, such as alcoholism, diabetes, thyroid or kidney disease and even cancer. Let your doctor know right away if you experience neuropathy with any red flag symptoms, including:
bone pain
weakness
frequent unexplained infections
Early diagnosis and treatment can prevent permanent damage.
Medication-related Neuropathy
Some medications can also cause neuropathy or vitamin deficiencies that lead to neuropathy. Proton pump inhibitor (PPI) medications such as esomeprazole (Nexium) and omeprazole (Prilosec) block stomach acids and can also lead to vitamin deficiencies that spur neuropathy.
The diabetes medication metformin can lower vitamin B12 levels which can also cause neuropathy. People taking it should have their B12 levels checked regularly.
Though it’s not completely understood how it happens, long-term carbidopa/levodopa use can increase neuropathy too. Duopa carbidopa/levodopa intestinal gel therapy is more likely to cause peripheral neuropathy than oral tablets or capsules.
Other therapies that can cause neuropathy include:
Some chemotherapy treatments
Some immune suppressants
Nucleoside reverse transcriptase inhibitors (NRTIs), HIV medication
Amiodarone
Colchicine
Disulfiram
Hydralazine
Hydroxychloroquine
Metronidazole
Nitrofurantoin
Phenytoin
Similar Conditions
Restless leg syndrome and peripheral neuropathy can both cause an uncomfortable sensation in the legs. Sometimes people will say they have restless leg syndrome but actually what they're describing is neuropathy.
Neuropathy pain can sometimes be mistaken for arthritis, too. Neuropathy is often described as a burning, prickly, sharp or throbbing pain. Arthritis can also be described as throbbing pain, but it’s often accompanied by tenderness and joint stiffness
A common misconception is that deep brain stimulation (DBS) – a procedure where electrodes are implanted in the brain and block nerve signals that impair movement by way of a pulse generator – can cause peripheral neuropathy. It doesn’t, but tingling can be a stimulation side effect. An in-office device adjustment can usually fix this.
Treatment
Neuropathy treatment requires identifying the underlying causes. When vitamin deficiency is the cause, supplementation can lessen neuropathy and stop nerve damage.
Medications that can alleviate nerve pain but don’t stop nerve damage include:
Selective serotonin and norepinephrine reuptake inhibitor (SNRI) antidepressants duloxetine and venlafaxine.
Tricyclic antidepressants, such as nortriptyline.
Topical treatments including capsaicin cream and lidocaine cream or patch.
Onabotulinum toxin injections, such as BOTOX®.
Percutaneous electric nerve stimulation is a nonmedication therapy to help people with urinary incontinence due to neuropathy.
Fatigue
Excessive daytime sleepiness describes someone who falls asleep mid-conversation. Fatigue is different. Better explained as extreme exhaustion, about 50 percent of people with PD live with mental or physical fatigue. It can start early in Parkinson’s and persist throughout the course of the disease.
Possible Causes
The chemical changes that cause PD movement problems can cause fatigue. PD dyskinesias, involuntary dance-like movements, can leave those who experience it exhausted, too.
Left untreated, common PD sleep disorders can cause fatigue. Vitamin deficiencies, lifestyle habits, including a lack of regular exercise, alcohol use, poor nutrition and other diseases or disorders can also cause fatigue.
Watch for sudden onset of other symptoms associated with fatigue, including:
Shortness of breath
Weight loss
Signs of abnormal bleeding
Fever
Enlarged lymph nodes
Irregular heart rhythm
While not necessarily connected to fatigue, PD dopamine agonist medications such as pramipexole, ropinirole and apomorphine can cause sleepiness and sleep attacks. People with PD who drive or operate machine and take such medications should pull over if they feel tired. Rest or have someone else drive.
Medication-related Fatigue
Some medicines and PD treatments can cause fatigue, too. These include:
Medications that treat depression, a common PD symptom
Over-the-counter sleep and allergy medications, such as diphenhydramine
Beta blockers, such as metoprolol or carvedilol, sometimes used for tremor-control
Neuropathy medications
Blood-pressure medications
Dopamine agonists apomorphine, pramipexole, ropinirole and rotigotine
Levodopa
Amantadine
Treatment
Treating fatigue can sometimes be as simple as making lifestyle adjustments, including eating healthier, following a regular sleep schedule and getting daily exercise.
It’s also important in Parkinson’s to limit motor fluctuations, or “off” times. Work with your doctor to ensure your PD medications are lasting as long as they should – you may need a dose or timing adjustment.
One medication that has been shown to help with PD-related fatigue is rasagiline. There is insufficient evidence for other medications, such as methylphenidate or modafinil.
GI Issues
About 80% of people with Parkinson's experience GI issues. These can occur throughout the gastrointestinal tract, from drooling and swallowing problems to intestinal blockage and constipation, one of PD’s most common GI symptoms.
Though constipation is often defined as difficulty emptying the bowels or small, hard stool, watery stool can be a sign of severe constipation or impaction. Potentially life-threatening, impaction can lead to bowel obstruction or a tear in the colon.
Constipation can cause a bloated or full feeling, acid reflux, nausea or cramping. A build-up of hard stool can also cause vomiting.
Possible Causes
Many who live with PD experience constipation long before they are diagnosed. It can stem from many causes, including the neuropathy-related delayed emptying of the gut mentioned earlier, gastroparesis. Gastroparesis slows and weakens stomach muscle contractions, delaying digestion.
PD-related movement difficulties may make it more difficult to travel to the bathroom, so someone may limit their fluid intake, increasing dehydration and constipation. Movement difficulties may also limit exercise, which can help alleviate constipation.
As people age, GI issues are more common. Diabetes, thyroid disease and others can also slow gastric emptying. Damage to the vagus nerve from childbirth or surgery can cause constipation, too.
It’s important to call your doctor right away should you experience any red flag symptoms, including:
Frequent, persistent abdominal pain
Blood in your stool
Watery stool
Unintentional weight loss
Fever
Medication-related GI Issues
Constipation, nausea and vomiting are common medication side effects. Diuretics, or water pills, such as furosemide (Lasix) can pull water out of the body, causing constipation. Doctors often avoid prescribing older people diuretic or dehydrating medications as they already face increased dehydration risks.
Used to treat blood pressure, diuretic hydrochlorothiazide (HCTZ) can also cause constipation and is associated with a drug interaction with PD medicine amantadine.
Anticholinergic medications are those that can slow gut movement. They include oxybutinin and over-the-counter diphenhydramine.
PD-related gastroparesis can also impact how medications are absorbed. Most medications taken by mouth are absorbed in the stomach or further below it in the small intestine. People with decreased gut motility may find PD medications such as carbidopa/levodopa take longer to take effect or seem less effective.
Stomach acid-blocking proton pump inhibitors (PPIs) such as esomeprazole (Nexium) can increase the risk of a condition called small intestinal bacteria overgrowth (SIBO), experienced by up to 50 percent of people with Parkinson’s. SIBO can also cause levodopa and other medications to take longer to work, wear off more quickly or not work at all, because they must travel to, and through, the stomach to be effective.
Some gut bacteria, such as enterococcus faecalis, can actually breakdown levodopa itself. H. pylori, a type of stomach infection, can also decrease levodopa absorption. Antibiotics can help with SIBO and H. pylori.
Treatments
Your doctor can help discover and treat GI issues and they might refer you to a gastroenterologist, a doctor specializing in GI issues.
Eating fiber-rich foods and decreasing starchy ones, drinking more fluids and increasing exercise can all minimize constipation. Dopaminergic medications – those that replenishing or mimic dopamine in the brain – apomorphine injections, BOTOX® injections and biofeedback techniques can also alleviate the increased straining, pain and incomplete bowel evacuation common in Parkinson’s.
Treatment Tips
Bring a complete list of current medications, including any over-the-counter medications or supplements, to every doctor’s appointment. Also include a symptom log. Remember to describe what you are feeling, rather than using medical terms. This can help your healthcare team differentiate conditions and determine treatment.
Choosing one pharmacy to fill all of your medications is also helpful, as the pharmacy can flag any drug interactions.
Order or download the Aware in Care hospital kit. This can help your healthcare team understand what prescription medications you are taking, the importance of timing your medication and other vital information.
