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.
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.
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.
Happy 2023! Like many of you, I’m using the New Year as a jump start for getting back into some healthier habits.
I have three goals: eat better, exercise more regularly, and spend more time with my kids and family. These may seem really basic, but after living with Parkinson’s for fifteen years, I’ve found that they are the key to living well. If I’m not doing all three, things quickly get out of balance; symptoms progress; and I don’t feel like myself.
This past year I’ve struggled with symptom progression, including increased rigidity and tremor. While this is normal for this stage of Parkinson’s, I’ve always been a competitor. I want to do everything I can to keep doing the things I love, like traveling to watch my kids play sports or hanging out with friends.
I’ve always held the belief that you should “leave it all on the court,” and that’s the approach I’m taking to my health this year. In preparation for 2023, I spent time thinking about what I needed to do in order to eat better, exercise regularly, and spend time with the people I love. For me, the key to all three is getting my care team together, which includes my providers who I’m working with to find better approaches for medication management and a physical therapist who helps me with some of my symptoms like rigidity. My care team also includes my personal trainer who works with me to tailor an exercise program that supports my physical and mental health.
What about you? What are your goals? What will it take to achieve them? What support do you need to live your best life with Parkinson’s this year? Comment here or join the conversation on Facebook, Instagram, or Twitter.
What other people in our community are saying about living well with Parkinson’s:
Brian’s Corner is sponsored by Amneal.
GLOBAL ALLIANCE TO END PARKINSON’S DISEASE LAUNCHES NEW SYMBOL FOR PARKINSON’S AWARENESS
Vancouver, BC Canada – April 1, 2022 – More than 80 Parkinson’s Disease organizations and thousands of advocates from 83 countries announce the launch of ‘The Spark,’ a new international symbol for Parkinson’s awareness, to increase conversation and public awareness around the world’s fastest growing neurological disease. The symbol will be promoted and shared around the world during World Parkinson’s Day on Monday, April 11, 2022.
The Spark, inspired by dopamine – a critical electro-chemical neurotransmitter that people with the disease are striving to retain – will be used to energize a global movement and inspire urgency, unity and hope to end Parkinson’s Disease. “The who’s who of Parkinson’s combine forces under a new symbol to keep the disease top of mind for everyone. The Spark is intended to electrify a powerful movement changing how all of us think about this disease. We want to break the stigma around Parkinson’s. We’re leading a louder call to fund medical breakthroughs. And together – we’re striving to put Parkinson’s in the past,” said Larry Gifford, founder of Global Alliance to End Parkinson’s Disease (also known as the PD Avengers).
SHARE YOUR SPARK ON WORLD PARKINSON’S DAY
This World Parkinson’s Day, we are calling on those impacted by the disease to stand up, speak out and unite to end Parkinson’s. People can join our movement by sharing The Spark with friends, family and on social media channels on Monday, April 11, 2022.
Every organization, individual or group who want is encouraged to share The Spark in their campaign, event or communications around World Parkinson’s Day and beyond. The Spark toolkit can be downloaded here worldparkinsonsday.com. People can either personalize The Spark or share one of dozens of pre-made graphics.
Media Contact: Larry Gifford President and Co-Founder of PD Avengers 778-233-6173 Larry@PDAvengers.com
For most people, the cause of Parkinson’s is unknown, though most experts agree that PD is caused by a combination of genetic and environmental factors. While we can’t do much about our genetics, we learned in this February’s Expert Q&A with the Michael J. Fox Foundation and Earth Justice how we can advocate for federal legislation that will reduce the risk of certain environmental factors.
One herbicide that has been heavily linked to Parkinson’s is paraquat, a widely used commercial weed killer in the U.S. that is banned in 32 countries, including the European Union and China. Paraquat is thought to increase the risk of of PD by 320 percent.
Organizations like the Michael J. Fox Foundation have made it easy for you to contact your members of Congress about the Protect Against Paraquat Act, which would eliminate paraquat from the U.S. agricultural system.
Taking action when and where you can is one way to promote strong mental health as you continue living with PD. Contacting your lawmakers takes less than ten minutes and it feels good to advocate for yourself and others!
Thank you to our sponsors, Amneal and Kyowa Kirin, and to all of the generous donations that help support BGF Parkinson’s programs.
I have experienced a lot of things throughout my years, but nothing like the uncertainty of 2020. Knowing that we’re all in this together has helped me remain focused on the things I can control, like continuing our work to improve the well-being of people with Parkinson’s. As we countdown the final days of 2020, I’m writing to express my gratitude for your support. Thanks to you, we’ve been able to keep our community connected and engaged during this difficult time through our online programs for people with Parkinson’s and their loved ones.
Will you consider making an online gift this year to support our programs in 2021?
This year we celebrated 10 years of service to the Parkinson’s community. It’s a milestone I couldn’t have imagined when I started the Brian Grant Foundation in 2010, two years after my Parkinson’s diagnosis. While we weren’t able to celebrate our anniversary the way we had planned, I hope you know that I’m grateful to everyone who has supported us over the years. We’ve grown into a world class organization and a community that’s living better, together.
As we head into a new year, I hope we can count on you to be on our team. Please consider making a year-end gift to the Brian Grant Foundation today.
Have a safe and happy new year!
The Brian Grant Foundation is actively engaging with national organizations to advocate for policies, research, funding and medical therapies that help people with Parkinson’s and their families. BGF works closely with Michael J. Fox Foundation’s Unified Parkinson’s Advocacy Council (UPAC) and PD Avengers on advocacy initiatives. Both organizations are involved in a wide variety of initiatives to make change and unite Parkinson’s efforts. We’re asking you to help advocate for people with Parkinson’s and their families by taking action today.
Here is a list of current action steps that you can take to advocate for people with Parkinson’s and their families:
PREVENTING PARKINSON’S AND ENSURING PEOPLE WITH THE DISEASE HAVE ACCESS TO CARE IS URGENT.
Parkinson’s Disease is the fastest growing neurological condition in the world. The costs associated with Parkinson’s are also increasing at a rapid pace.
According to Michael J. Fox Foundation, more than one million Americans, including over 110,000 military veterans, live with Parkinson’s and it costs the federal government and American families an estimated $58 billion each year. It’s estimated that more than 1.6 million Americans will live with PD by 2037 at an estimated cost of nearly $80 billion.
Through advocacy efforts, we can help prevent Parkinson’s, develop better treatments and ensure people with the disease have access to essential care. Together we can end Parkinson’s and help people with the disease live well today.