COVID-19 has impacted all of us. But with the approval of safe and effective vaccines, we can begin to look forward to the end of the pandemic. While vaccines are becoming available to more people, we’ve compiled resources to help answer your questions about COVID-19 vaccines and Parkinson’s.
Start by reading the official statement from the International Parkinson and Movement Disorder Society, which includes the following information:
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 see the vaccine as quickly as it is available.
Read the full MDS COVID-19 Vaccine Statement for Patients.
Read commentary in the Journal of Parkinson’s Disease from leading Parkinson’s researchers and physicians who recommend COVID-19 vaccination with approved vaccines to persons with PD, unless there is a specific contraindication.
In addition to this statement, we’ve gathered information from leading Parkinson’s organizations to help provide answers and guidelines:
1. Michael J. Fox Foundation’s COVID-19 Resource Hub – This dedicated hub provides information and resources to support the worldwide Parkinson’s community through this challenging time. The hub includes information about the vaccines and efforts to ensure access for people with Parkinson’s.
2. Parkinson’s Foundation’s Parkinson’s and the COVID-19 Vaccine – This web page includes a written and video Q&A with Dr. Michael Okun, Parkinson’s Foundation’s National Medical Advisor. The page also includes links for more information about COVID-19 and Parkinson’s.
3. American Parkinson’s Disease Association’s Answering Your Questions About PD and COVID-19 – The APDA has also created a webpage with a written Q&A about the COVID-19 vaccines. On January 27, 2021 Dr. Joel Perlmutter hosted a special webinar to answer your questions about the vaccine.
We all continue to work hard to help ensure the health and safety our PD community. BGF remains committed to providing resources to help people with Parkinson’s live inspired lives, better together. Join us for an upcoming webcast. Learn more at briangrant.org/events.
February is dedicated to people who have a parent with Parkinson’s
Portland, Ore. (Jan. 22, 2021) – Brian Grant Foundation (BGF) is dedicating February to people who have a parent with Parkinson’s. These “Kids of Parkinson’s” have unique needs in their journeys to support parents who have this incurable neurodegenerative disease. To help support this group of early to late adults BGF is providing online educational and networking events throughout the month to learn about Parkinson’s and meet others in the community.
For the first event on Tuesday, February 9 at 12pm PST, Ray Dorsey, MD, will be presenting Preventing Parkinson’s as part of BGF’s monthly Expert Q&A series presented by Kyowa Kirin. Dr. Dorsey, who is co-author of Ending Parkinson’s Disease and the David M. Levy Professor of Neurology and Director of the Center for Health + Technology at the University of Rochester, will discuss factors that contribute to a Parkinson’s diagnosis and steps you can take to reduce your risk of developing the disease.
On Thursday, February 11 at 6pm PST BGF will host an online roundtable discussion of people who have a parent with Parkinson’s. The roundtable will feature Jaydon Grant, son of Brian Grant and a standout football player at Oregon State University; Manju Bangalore, a physicist, actor, and founder of two nonprofits, Operation Period and Painting with Parkinson’s; and Mike McCastle, an American endurance athlete and strongman. Each will share their stories, from learning about their parents’ di-agnosis to supporting them in their daily lives. The evening ends with a Q&A.
To register for these free online events, visit briangrant.org/events. Throughout the month, BGF will also be publishing Kids of Parkinson’s resources online at briangrant.org.
Parkinson’s is a neurodegenerative disorder that affects cells in the brain that produce dopamine, a chemical messenger that helps to control movement. The outward signs of Parkinson’s may include tremors, slowness of movement, balance problems and rigidity. Though there is no cure for Parkin-son’s, research has shown that regular exercise, healthy eating and social connections are important for managing the condition and improving quality of life with the disease.
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ABOUT BRIAN GRANT FOUNDATION
Brian Grant Foundation provides tools to improve the well-being of people with Parkinson’s. BGF was founded in 2010 by former NBA player Brian Grant, who is living with the disease. Learn more about BGF’s programs at www.briangrant.org.
Mike McCastle’s record-breaking feats, inspired by the 12 Labors of Hercules, are mindboggling journeys to the outer limits of mental strength.
On January 23, 2021 Mike will surpassed the world record for the longest full body immersion in ice after staying submerged for 2 hours and 40 minutes. This effort supported the Brian Grant Foundation’s exercise programs for people with Parkinson’s.
Mike McCastle is an American endurance athlete and strongman. In 2014, driven by a charitable purpose, he founded the Twelve Labors Project – an initiative through which he performs seemingly impossible challenges that push the limits of human performance. To date, Mike has set several world records while raising funds and national awareness in support of various causes such as Parkinson’s disease and Veteran mental health awareness.
As a teenager, Mike cared for his father, Raymond, who had been diagnosed with Parkinson’s. Mike quit the basketball team to focus his time on his dad’s well-being. Eventually Mike made the very hard decision to leave his dad to join the Navy, where he served for 11 years. In 2014, Raymond McCastle passed away, inspiring Mike to start his Twelve Labors Project.
The longest full body immersion in ice world record attempt symbolizes a common Parkinson’s symptom of rigidity. Rigidity is experienced by someone with Parkinson’s as stiffness in the extremities beyond what occurs naturally as a result of old age or arthritis. Mike’s father experienced this later in his battle with the disease as it progressed. As his symptoms worsened he would experience “freezing”, shortened steps followed by an inability to move his feet and loss of balance. He once said that that he felt “frozen”, in his own body.
Research has shown that with exercise, this symptom and many others can be mitigated and made easier to cope with by improving strength, balance and coordination. Exercise is an intervention that also significantly reduces the risk of falling.
Retiring into the sunset is a dream for many of us. However, for Steve Stryker, his retirement was forced after being diagnosed with Parkinson’s at 49 years old.
At that time Steve was the chief operating officer for a top credit union in St Louis, enjoying his free time with his grown children and playing basketball most days of the week. Steve’s diagnosis derailed his vision of the future. He wondered, “will l I be able to play with my grandchildren? Or will I be sitting in the corner shaking, not able to talk?” Doubt, despair and depression began to set in.
It wasn’t until Steve moved to Salem, Oregon that he was able to refocus his future with a new wife and find new joys in a new community. He rediscovered the benefits of exercise and the feeling you get after being active and healthy.
That’s when Steve joined Rock Steady Boxing for the first time. The boxing workouts pushed him to exhaustion, which helped eliminate his Parkinson’s symptoms. He would spend and hour and a half boxing, and then another hour doing CrossFit most days of the week. Steve saw immediate results with consistency and high intensity exercises. He felt like his old self.
Steve knows for certain his symptoms diminished with exercise. During Covid, gym closures meant Steve’s activity level dropped tremendously. He remained active by walking, but knew he needed to start his fitness routine again. Thankfully, his CrossFit gym has reopened. He’s finding the motivation to do that while starting to run again.
Regaining endurance and strength has helped Steve regain his confidence. He knows being active in combination with his medications help him manage his symptoms and live a full life. He sees himself being active and healthy for years – at 51 years old he ran a long-distance relay called Hood to Coast. He’s considering a return to public speaking like he did before being diagnosed. And he’s looking forward to throwing his grandkids in the air and getting down on the floor to play with them.
Steve credits exercise with helping him break free of depression and despair by letting go of negative thoughts and finding himself again. Thoughts are more clear for Steve now and he looks forward to tomorrow.
Parkinson’s doesn’t just affect people physically—it can also take a toll on our emotions. We asked clinical psychologist Louise Marasco about the mental impacts of PD and how to manage.
Sometimes people with Parkinson’s spend so much time concentrating on the physical changes that occur with PD that they neglect to address the mental or emotional impacts of this disease. Stress, anxiety, depression, grief and apathy are common emotions that people with Parkinson’s may experience at diagnosis or as the disease progresses.
We recently spoke with Dr. Louise Marasco, a licensed clinical psychologist at Oregon Health & Science University about managing the impacts that Parkinson’s disease (PD) has on a person’s mental and emotional health.
Brian Grant Foundation: What are some common mental health struggles that people with Parkinson’s cope with as their disease progresses?
Louise Marasco: The most common mental health struggle I hear about is what people refer to as anxiety. Depression is certainly prevalent, though I would argue that often times it is more an issue of apathy and/or emotionality, difficulty regulating emotions, rather than clinical depression.
Another common issue—if not across every person I have met with PD—is grief. The reason grief is so prevalent is that as the disease progresses, as in any progressive disease, one loses repeatedly. It could be playing a favorite sport, cooking, driving, a career or relationship changes. It is important to gain some coping skills early to best support oneself through the stress of ongoing grief. I often encourage people to find new activities they enjoy early on that may require different skills, for example, bird watching, listening to music or looking at artwork.
BGF: What’s the difference between depression, apathy and grief in relation to Parkinson’s, and how do you treat them?
LM: Great question, and sometimes difficult to tease out. Grief is a normal, expected response to loss. People grieve when they lose loved ones, but they also grieve when they can’t work anymore, or play squash or walk without assistance. We do not exactly treat grief, but nurture, support and guide people going through this normal response.
There is no right or wrong way to grieve. There is a lot of overlap in symptoms between grief and depression. However, depression is problematic and does require treatment. It can interfere with function and ultimately worsen and impact one’s physical health. Depression is most effectively treated with a combination of psychotherapy and antidepressants.
Apathy (a lack of drive, motivation or interest) can most definitely be seen in depression. I often refer to it as one’s ignition being broken. One cannot seem to get going, but once they do, they are fine. Apathy is often seen in individuals with PD who are not actually depressed.
Treatment can vary. In psychotherapy, sometimes I encourage people to engage their partners to be their ignition. But that is an agreement with which both partners have to feel comfortable. It is essential for a qualified person with experience to help tease out grief vs. depression vs. apathy and to what degree all of these may play in one’s journey with PD.
BGF: Anxiety can be debilitating for people with Parkinson’s. Is there some sort of neurological connection between anxiety and PD?
LM: From my experience, the anxiety people with PD experience is a quite unique. I’ve heard it referred to as an “internal tremor.” Given that people seem to find relief from this symptom through use of their PD medication, I conceptualize it as a neurological symptom. It is not anxiety due to an emotional response to, or the reflection upon, having PD.
However, psychotherapy can help reduce the symptoms through helping people restructure cognitions and increase relaxation techniques (CBT). I have never been able to end anxiety completely for someone with PD, though reducing it has generally been embraced.
BGF: Where does medication factor in? Is it safe to take anti-depressants or anxiety medication along with medications for Parkinson’s?
LM: The most important consideration here is to seek medical advice regarding antidepressant intervention from a provider that is familiar with PD and with the person’s age group. Anxiety medications (anxiolytics) are often avoided in our older adults and older-older adults for a couple of reasons.
First, as people age, there are increased risk of complications (cognitive decline, balance problems, etc.) The other complication is that one can easily become habituated to these medications which means they need more and more of it to get the same effect. This all said, there is a delicate balance sometimes, and I have seen it prescribed under certain circumstances.
BGF: What advice would you have for people newly diagnosed with Parkinson’s who are just now starting to get over the shock?
LM: Exercise! In case you have not heard that from every provider you have seen yet, the most important contribution you can do for your health to slow the progression of Parkinson’s disease through exercise. Ok, now what about mental health? Yes, exercise. We know it helps the mood.
I will share another insight that people with PD have told me has been helpful. An individual just diagnosed with PD is the same person they were the day prior to the diagnosis. If one thinks of life prior to PD, one probably had a certain amount of time to think about the past, time to think about the present, and time to think about the future. In my experience, as with any progressive disease, people tend to think about the future considerably more than they did prior to the diagnosis.
In addition, one might compare life to the past more frequently. Before one knows it, the time to live in the present has been squeezed to a fraction of what it was in the past. And not only that, the thoughts about the future and past can be negative—worry, fears, concerns and a variety of additional less than settling thoughts.
My advice here would be to first understand that this is very normal and expected. Then, find ways to quiet your mind, and in that practice, you are expanding your time to be in the present which will help you cope with the challenges related to PD.
BGF: What advice would you have for care partners, and why it’s important for them to focus on their own mental health as well?
LM: Caregiving is stressful, even if one loves it. It is very easy for caregivers to neglect their needs because it appears their spouse with PD has bigger needs. First, I suggest the caregivers ask themselves what their needs are—physical, mental health, general well-being. People generally have enough life experience to know what they need to function at their best.
Sometimes people need downtime, spiritual activities or socializing; and though they are aware they need these things, they minimize them or even neglect them altogether. However, when individuals neglect their needs, they cannot be their best for their loved one. I highly suggest protecting those needs.
I would also suggest exploring a caregiver’s support group. Connecting and relating with others is a need for most humans. Giving and receiving support from others going through something similar allows for a level of relating that may not be found in other relationships.
