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These organizations have online and in person classes, specifically tailored for people with Parkinson’s:

The Parkinson’s Fitness Project’s mission is developing physical and online training centers to promote ongoing neurologic health in those with Parkinson’s Disease.

Tribe Wellness LLC offers group exercise programs steeped in evidence-based exercise interventions from the best leading research in physical therapy and exercise science.

danceDaigre

DanceDaigre offers a lifelong dance practice for new and experienced dancers and has online classes for people with Parkinson’s disease.

Dance for PD

The award-winning Dance for PD® program, founded in 2001, offers specialized dance classes to people with Parkinson’s.

Parkinson Wellness Recovery (PWR!)

The mission of PWR! is to enhance access to and awareness of research-driven exercise that improves quality of life for people with Parkinson disease.

Power for Parkinson’s

The mission of Power for Parkinson’s is to provide free fitness, dance, and singing classes for people with Parkinson’s Disease and their care partners in the Austin, Texas area and around the world.

PD-Connect® is live streaming virtual exercise classes on Zoom and in-person classes throughout the San Francisco Bay Area.

These organizations allow you to search for classes in your area:

Rock Steady Boxing

The mission of Rock Steady Boxing is to equip our affiliates and empower the coaches to improve the quality of life of people with Parkinson’s disease through a non-contact, boxing-based fitness curriculum.

PWR!Moves

PWR!Moves is a program of PWR! that includes Parkinson’s-specific exercises that help maintain and restore skills that have deteriorated and can interfere with everyday movements.

Takeaways from the 2023 World Parkinson Congress

Last month I had the opportunity to travel to Barcelona to attend the World Parkinson Congress. Getting there took a lot out of me – after a 15-hour flight across nine time zones, my luggage didn’t arrive. As you can imagine, it’s not easy for someone who is 6’9” to get new clothes. I was also really tired and had a hard time with jet lag. But after a couple of funky days wearing the same clothes and catching up on sleep, I finally had a chance to go to the WPC. I had a great time meeting other people with Parkinson’s and their care partners. One of the big highlights for me was getting a chance to see comedian and fellow person with Parkinson’s Paul Mayhew-Archer. He was hilarious! I believe that laughter is a form of medicine, so it was great seeing comedy at the WPC. 

I also learned about ping pong by Nenad Bach, got a surfer hat from Fuerte es la Vida Parkinson and met the group from Columbia University that created We Keep Moving. I had breakfast with Hannington Kabugo who talked to me about his efforts to help people with Parkinson’s in Uganda. And we had a couple of after WPC sessions in the hotel lobby where I got to hang with people in our community.

Being around other people with Parkinson’s is important to me and I really enjoy the camaraderie. This is the first WPC that I’ve attended since I gave the keynote in 2016 and I’m already looking forward to the next one.

As an athlete, I’ve always known how important it is to take time to rest and recover. You’re stronger when you do. 

This became even more clear to me when I was diagnosed with Parkinson’s disease. We often talk about “on time” with PD (it’s even the name of our podcast). “On time” is when you’re feeling good and able to do the things you want to do. A hard lesson I’ve had to learn is to not overdo it on my on time. 

This lesson is on my mind as we wrap up our 12th Annual Shake It Till We Make It Gala and start looking forward to the 6th World Parkinson Congress happening in Barcelona this July. It may come as a surprise to learn that I actually have a really difficult time public speaking. When I get nervous, my symptoms flare, which makes me self-conscious and creates a perpetuating cycle of anxiety and fear. It takes a lot out of me to go up on a stage. 

The crowd at the gala this year made it easy and fun, for which I’m grateful. But I know that in the coming weeks I need to take time to rest, relax, and recover before we head to Barcelona. 

One of my favorite ways to rest is to be in community with other folks living with Parkinson’s. There’s no pressure to perform or hide symptoms when you’re with friends who also have PD. Forming my own group of peers, the Movers & Shakers, has been one of the best things that happened to me on my journey with Parkinson’s and was a huge inspiration for me in starting the Brian Grant Foundation. They remind me to slow down and do the important work of letting my mind and body recover as I live a full life with Parkinson’s disease. 

I hope you have restful plans for the start of summer and find comfort in the community we’ve created at BGF. 

Brian’s Corner is brought to you by Amneal.

Thirteen years ago, I had just been diagnosed with Parkinson’s. Like many people, when I was first diagnosed, I wanted to support research to find a cure and that was our focus back then.

But after the reality of this disease set in, I wanted to find ways to live a good life with Parkinson’s. And while my doctors helped with my medications and talked to me about living a healthy life, there wasn’t a lot of information or support to help me do that. That’s why we pivoted to focus on helping people with PD lead active and fulfilling lives.

During COVID, we increased our programs to help people exercise, eat well and improve their mental health. We also expanded our community to people around the world. We learned there is value in sharing our stories and the ways we navigate the unique challenges that come with PD. I got to be a big part of that community as the host of our podcast and a team member on our relay.

I have always chosen to be honest about my experience with PD and to use my voice and connections as a former NBA player to help others, but I never realized how important that honest sharing was until we saw the positive feedback from our podcast and relay video this past year. Because of what we have learned we have made building and growing our community a significant focus of our strategic plan.

When I review the past 15 years, I realized that I have moved from leading the foundation as a former NBA player to leading as a meaningful participant in this journey alongside friends who are navigating their own challenges. This community is helping me, and I see it helping others.

Thank you all for your support, especially at this month’s 12th annual Shake It Till We Make It Gala. Together, we raised $342,500 to help us grow and deepen our community, and offer even more tools to inspire and empower people impacted by Parkinson’s to lead active and fulfilling lives.

Brian’s Corner is brought to you by Amneal.

Join our webcast discussion with Ray Dorsey, MD, Brian Grant, and Amy Lindberg on Monday, March 27 at 12pm PT/3pm ET. Register for the Zoom discussion here.

A common and widely used chemical may be fueling the rise of the world’s fastest growing brain condition – Parkinson’s disease. For the past 100 years, trichloroethylene (TCE) has been used to decaffeinate coffee, degrease metal, and dry clean clothes. It contaminates the Marine Corps base Camp Lejeune, 15 toxic Superfund sites in Silicon Valley, and up to one-third of groundwater in the U.S. TCE causes cancer, is linked to miscarriages and congenital heart disease, and is associated with a 500 percent increased risk of Parkinson’s disease.

In a hypothesis paper in the Journal of Parkinson’s Disease, an international team of researchers—including University of Rochester Medical Center (URMC) neurologists Ray Dorsey, MD, Ruth Schneider, MD, and Karl Kieburtz, MD—postulate that TCE may be an invisible cause of Parkinson’s. In the paper they detail the widespread use of the chemical, the evidence linking the toxicant to Parkinson’s, and profile seven individuals, ranging from a former NBA basketball player to a Navy captain to a late U.S. Senator, who developed Parkinson’s disease either after likely working with the chemical or being exposed to it in the environment.

A ubiquitous and widespread industrial pollutant

TCE was a widely used solvent employed in a number of industrial, consumer, military, and medical applications, including to remove paint, correct typewriting mistakes, clean engines, and anesthetize patients. Its use in the U.S. peaked in the 1970’s, when more than 600 million pounds of the chemical—or two pounds per American—were manufactured annually. Some 10 million Americans worked with the chemical or other similar industrial solvents. While domestic use has since fallen, TCE is still used for degreasing metal and spot dry cleaning in the U.S.

TCE contaminates countless sites across the country. Half of the most toxic Environmental Protection Agency’s Superfund sites contain TCE. Fifteen sites are in California’s Silicon Valley where the chemicals were used to clean electronics and computer chips. TCE is found in numerous military bases, including Camp Lejeune in North Carolina. From the 1950s to the 1980s a million Marines, their families, and civilians that worked or resided at the base were exposed to drinking water levels of TCE and perchloroethylene (PCE), a close chemical cousin, that were up to 280 times above what is considered safe levels.

TCE and Parkinson’s disease

The connection between TCE and Parkinson’s was first hinted at in case studies more than 50 years ago. In the intervening years, research in mice and rats have shown that TCE readily enters the brain and body tissue and at high doses damages the energy-producing parts of cells known as mitochondria. In animal studies, TCE causes selective loss of dopamine-producing nerve cells, a hallmark of Parkinson’s disease in humans.

Individuals who worked directly with TCE have an elevated risk of developing Parkinson’s. However, the authors warn that “millions more encounter the chemical unknowingly through outdoor air, contaminated groundwater, and indoor air pollution.”

The chemical can contaminate soil and groundwater leading to underground rivers, or plumes, that can extend over long distances and migrate over time. One such plume associated with an aerospace company on Long Island, New York, is over four miles long and two miles wide, and has contaminated the drinking water of thousands. Others are found everywhere from Shanghai, China, to Newport Beach, California.

Beyond their risks to water, the volatile TCE can readily evaporate and enter people’s homes, schools, and work places, often undetected. Today, this vapor intrusion is likely exposing millions who live, learn, and work near former dry cleaning, military, and industrial sites to toxic indoor air. Vapor intrusion was first reported in the 1980s when radon was found to evaporate from soil and enter homes and increase the risk of lung cancer. Today millions of homes are tested for radon, but few are for the cancer-causing TCE.

Decades before symptoms appear

The piece profiles seven individuals where TCE may have contributed to their Parkinson’s disease. While the evidence linking TCE exposure to Parkinson’s disease in these individuals is circumstantial, their stories highlight the challenges of building the case against chemical. In these cases, decades have often passed between exposure to TCE and the onset of Parkinson’s symptoms.

The case studies include the professional basketball player Brian Grant, who played for 12 years in the NBA, and was diagnosed with Parkinson’s at age 36. Grant was likely exposed to TCE when he was three years old and his father, then a Marine, was stationed at Camp Lejeune. Grant has created a foundation to inspire and support people with the disease.

Amy Lindberg was similarly exposed to the contaminated drinking water at Camp Lejeune while serving as a young Navy officer and would go on to be diagnosed with Parkinson’s disease 30 years later. The piece details others whose exposure was the result of living close to a contaminated site or working with the chemical, including the late U.S. Senator Johnny Isakson, who stepped down from office after a Parkinson’s diagnosis in 2015. Fifty years earlier, he served in the Georgia Air National Guard, which used TCE to degrease airplanes.

Addressing the threat to public health

The authors note that “for more than a century, TCE has threatened workers, polluted the air we breathe—outside and inside—and contaminated the water we drink. Global use is waxing, not waning.”

The author proscribe a series of actions to address the public health threat posed by TEC. They note that contaminated sites can be successfully remediated and indoor air exposure can be mitigated by vapor remediation systems similar to those used for radon. However, the U.S. alone is home to thousands of contaminated sites and this process of cleaning and containment must be accelerated.

They argue for more research to better understand how TCE contributes to Parkinson’s and other diseases. TCE levels in groundwater, drinking water, soil, and outdoor and indoor air require closer monitoring and this information needs to be shared with those who live and work near polluted sites.

In addition, the authors call for finally ending the use of these chemicals in the U.S. PCE is still widely used today in dry cleaning and TCE in vapor degreasing. Two states, Minnesota and New York, have banned TCE, but the federal government has not, despite findings by the EPA as recently at 2022 that the chemicals pose “an unreasonable risk to human health.”

Additional authors include the paper’s co-first author, Maryam Zafar, now a student at the Harvard T.H. Chan School of Public Health, Samantha Lettenberger, Meghan Pawlik, and Dan Kinel with URMC, Bastiaan Bloem and Myrthe Frissen with Radboud University Medical Centre in the Netherlands, Caroline Tanner and Samuel Goldman with the University of California-San Francisco, and Briana De Miranda with the University of Alabama at Birmingham.

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Happy National Nutrition Month! Whether you’re new to BGF or have been following us for years, you can see we care a lot about nutrition as a key way to live with Parkinson’s.

As a young athlete, I burned so many calories that I never really had to pay attention to what I ate. Now that I’m in my 50s and not active on that level, it’s a different story. I also know that when I stick to a healthy diet, my symptoms are more manageable, I feel better, and I have more energy to do the things I want to do.

For the first time, I’m starting to cook more for myself at home. It’s so easy for me to order takeout when I’m not feeling well or I’m busy, but I know I’ll feel better in the long run if I prepare something for myself. Cooking for myself is a big step for me—I’ve never been much of a cook and learning how when I have a tremor and fatigue has been a challenge. But like most things worth doing, the extra effort is worth it.

This month, we asked what some of your favorite recipes are that support Parkinson’s nutrition recommendations. If you have some ideas for a new cook like me, I’d love to see them! We’ll be sharing a collection of them at the end of the month. In the meantime, here are a few of my personal favorites from the BGF collection:

Brian’s Corner is brought to you by Amneal.

Steve Stryker was diagnosed with Parkinson’s disease on April 26, 2016. As early as 2012, Steve noticed symptoms like slurring words and differences in his tone of voice, but his test results were all inconclusive. In the fall of 2016, he was interviewing someone at his workplace and noticed that he started having a hard time writing, that his lips were tightening when he tried to speak.

Finally, in 2016, Steve received his diagnosis.  He recounts being so relieved it wasn’t ALS that he laughed and hugged his doctor. 

“I felt relieved to know why I was having trouble speaking, why my movements were becoming slow and methodical, why I was having trouble writing, why I was shivering despite not being cold, why walking and running had become such a thoughtful process, why I was no longer upbeat and outgoing, and why the world seemed to have sped up and I was struggling to keep pace,” Steve shares.

But then the reality of living with Parkinson’s set in.

“I wasn’t prepared for the mood changes, the reduction in dopamine,” Steve says. “It was so hard to be in a good mood, and so easy to be depressed. I’m a very positive person and used to be extremely outgoing and now I’m much less.”

Steve says this fundamental change in how he showed up in the world had detrimental impacts for his marriage, and ultimately led to his divorce shortly after his diagnosis.

“So then I was facing the reality of living with a Parkinson’s diagnosis and dating in my fifties,” Steve says. “And let me tell you, nothing was more terrifying.”

Steve recounts how difficult dating with a diagnosis was, sharing that he always told people after the first date. 

“I lost a lot of second dates that way.”

Like many people living with Parkinson’s who are single, Steve felt it would be impossible to find someone who would be willing to take on the challenges of the disease. 

“And then I met Susi,” he says with a smile.

Steve and Susi met in March 2020 and Steve told Susi about his diagnosis right away.

“It wasn’t a big deal to me at all,” Susi shares. “I mean, it’s a big deal, but we all have things that are a big deal. Every relationship has challenges. If it wasn’t this, it would be something else. And to me, any challenge would be worth spending my time with Steve.”

“I had this guilt that I was shouldering her with some sort of burden because of my diagnosis,” Steve says. “But she helped me see that’s just not the case. We both make each other better. We both bring challenges. That’s what relationships are about.”

Susi and Steve say they take each day as it comes and focus on doing the things they love together, like exercising.

“Susi has been a very good influence on my exercise routine,” Steve says. “She really motivates me, especially during COVID when we had to work out at home.”

Interested in hearing more from Steve & Susi? Join us for our monthly Wellness Webcast on Wednesday, February 8 from 12:00-1:00pm PT!

Some thoughts on dating with Parkinson’s…

Accepting that I have Parkinson’s has been the biggest part of being able to get on with my life. But even with that acceptance, I still struggle with confidence when it comes to social situations and dating.

I never really thought of myself as a smooth operator, but I was definitely smoother than I am now! In the last few years of dating with Parkinson’s, I find myself worrying about whether the other person is worrying about me, or whether they will be able to handle certain situations, like when I’m eating really carefully because I’m afraid that food will get stuck in my throat. And I don’t want anyone to feel sorry for me, which makes it hard to communicate about how I’m feeling.

But I also know that most of my thoughts are just stories in my mind. People know I have Parkinson’s. Even if I hadn’t been in the NBA, there’s no hiding my tremor, especially when I’m nervous about going on a date. So when someone goes on a date with me, they are choosing to be with me with all my cards on the table. And I have found that most people are actually really cool.

The truth is relationships are hard whether or not you have Parkinson’s. You have to be okay with things not always working out the way you’d like. What’s important is that we get our heads right and not let the stories in our mind keep us from living our lives.

And never give up on love.

What people in our community are saying about dating with Parkinson’s:

@heysuzie shared: My husband and I had that date where you go: I really really like this guy!!! Then he was diagnosed with PD at age 33. I was 26. We dated for almost 9 years bc John was fearful to propose. He didn’t want to “do thet to me.” We’ve been married 19 years. But I always want credit for the 9 dating years too. So 28, really.

Brian’s Corner is presented by Amneal.

Watch the recording of our February Wellness Webcast where we talk with two couples, Allison Topperwein and Steven Eury and Steve Stryker and Susi Enderich, about dating and relationships with Parkinson’s.

Thank you to our sponsors, Amneal and Kyowa Kirin, and to all of the generous donations that help support BGF programs.