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.
Living with Parkinson’s can make setting and keeping goals a challenge. It’s hard to know what each day will bring when you’re living with a disease that has chronic and/or progressive symptoms.
However, symptom management for Parkinson’s depends on maintaining a healthy diet, exercising regularly, and creating a good support network—all things that can be supported by setting and keeping goals. The New Year is a great time to assess what goals you have and how you can achieve them realistically while living with Parkinson’s.
Coming to terms with doing things differently is often one of the hardest parts of a Parkinson’s diagnosis. Plan for things to take longer than they used to and brace yourself for setbacks. There will be days when you just can’t exercise vigorously, or when cooking a full plant-based meal from scratch just isn’t an option. As you’re setting your goal, think about what you can achieve, even on a bad day.
For example, you might set a goal to do some form of movement (even if it’s stretching on the couch!) rather than a goal to go to the gym and get a full workout every day. You know yourself and your symptoms best!
Take a moment to jot down all the steps needed to get to your goal. For example, if you have a goal of eating healthier, do you need to get a new pan? Organize your fridge? Set up a grocery delivery service? Write it all out.
Then think about what you can realistically do today. What about this week? How about this month? Another popular way to set and keep goals is to create a 30/60/90 plan, where you define what you’ll do in 30 days, 60 days, and 90 days. Do what works for you!
Once you’ve defined a realistic goal and figured out the necessary steps to achieving it, take some time to think about what will stop you. If your goal is getting out of the house at least once a week to do something fun, what will you do if you don’t have transportation? What will you do if the weather is bad?
Once you define your barriers and what you’ll do to keep your goal, think about who you can call on to help you. Maybe it’s a friend, a care partner, someone else you know living with Parkinson’s. Text or call that person and tell them your plan and how they can help you stick to it!
Setting and keeping a goal can be hard if you’re not seeing progress. Think about ways you can keep track of your wins! A star on the calendar, a sticker chart, a reward, a little dance party every time you reach a goal…there are endless ways to celebrate the small milestones you’ve defined that you need to meet to keep your goal. It may feel silly at first, but seeing all the days you have gone to the gym on a day you’re not feeling up for it can help remind you that you are much closer to your overall goal than you were before and keep you motivated.
If you’ve set and kept a goal while living with Parkinson’s, we’d love to hear from you! What did you do to make it happen? Sharing your story helps inspire others and create community. And we’d love to celebrate you! Setting and keeping goals while living with Parkinson’s is hard work.
You can email us at info@braingrant.org or message us on Facebook, Instagram, or Twitter.
On January 11, we kicked off our first Wellness Webcast of 2023 with Kat Hill and Nancy Peate, authors of Being Well with Chronic Illness: A Guide to Joy and Resilience with Your Diagnosis. See upcoming monthly Wellness Webcasts by visiting briangrant.org/events.
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.
Watch the recording of our October webcast to meet our Portland to Coast team and view the documentary of the relay! On August 26, 2022, a team of people with Parkinson’s and their loved ones began the 128 mile trek from Portland to Seaside, Oregon to raise awareness of the disease and the diversity in our community. Learn more at briangrant.org/ptc.
Thank you to our sponsors, Amneal and Kyowa Kirin, and to all of the generous donations that help support BGF programs.
“I don’t know where I’d be mentally and emotionally without it,” Amber shares. “The outpouring of support has been incredible. Just finding people going through the same thing has made such a difference for me.”
When Amber heard that the Brian Grant Foundation was going to attempt Portland to Coast, a 130 mile relay across the state of Oregon, to raise awareness about the diversity in the Parkinson’s community, she wanted in.
“As a single mom, as a Latina woman, as a young person, it’s so hard to find people who look like me represented in Parkinson’s literature. But we’re here! We exist! I really wanted to show that,” Amber said.
Amber had a lot of reservations. She describes herself as “completely sedentary” and works in an office. She would also need to travel from her home in El Paso, Texas, take time off work, and arrange care for her children.
Her supporters on TikTok rallied behind her 1000%, even making donations to BGF’s fundraiser on her behalf.
Amber walked the first leg of the relay, a 5.21 mile walk across inner-city Portland that began at 4:10am. While training for the race in the weeks prior, Amber had rolled her ankle, and she needed to stop to have it rebandaged about halfway. She also battled severe dystonia that left her with cramping feet.
“It was surreal,” Amber says now, a week after the relay. “I really didn’t think I would make it, and I was so nervous that I’d let the team down.”
Amber recounts befriending a random stranger also competing in the relay, a woman named Ethel who just happened to be keeping pace with her. Talking with her through the first leg gave Amber the strength she needed to finish the first five miles.
“That’s always been my experience though,” Amber says. “I’ve always had incredible people show up for me when I don’t expect them too. I’m very lucky.”
Her second leg of the relay was 3.8 miles and began at 11:15pm. Amber donned her reflective vest and lights and walked into the night.
“I was really scared, but so determined to do it for the team. You don’t expect to form bonds with people that quickly, but I’ve already told all of them ‘you’re not getting rid of me, you’re stuck with me now!’ I wouldn’t have made it through that second leg without Jenny and Todd.”
Jenny Wilhelm and Todd Vogt, fellow team members, took turns walking with Amber to keep her going, even though both had already completed legs earlier in the day. Amber recounts being “totally exhausted,” hardly able to put weight on her leg, but feeling so determined to get to the finish line.
“After I got back home, I felt like ‘You want me to go back to work now? Do you know what I just did?’ It was completely life-changing,” Amber says. “Normally, I have terrible fatigue. After completing the relay, I was bursting with energy even though my body was so fatigued. I just felt incredible.”
Team Grant finished the 130-mile relay with hours to spare, but Amber says that wasn’t her biggest surprise during the experience.
“We were all so glad to finish at all, I don’t think any of us thought we would finish early. But my biggest surprise was actually meeting Kevin and Jenn,” Amber laughs. She shares that as a single mom with Parkinson’s, she assumed she would never meet anyone who would want to “take on the disease.”
“I don’t want to be a burden to anyone,” Amber says. “But I watched Kevin and Jenn and the love they share. They met after Kevin had been diagnosed, and Jenn just loves him, you know? When he was doing his legs, Jenn would stop breathing until he was done. They just adore each other. I realized maybe that really is possible for me.”
After documenting herself undergoing Deep Brain Stimulation (DBS) in 2021, battling COVID directly after, and completing a 130-mile relay with a team of people also living with Parkinson’s disease, Amber agrees that maybe she’s almost brave enough to start dating again. If and when she does, she promises to chronicle her experience at @notthefakeamber on TikTok.
Watch the recording of our September Expert Q&A on the power of storytelling. Rani Sanderson, Projects Director for StoryCentre Canada, discusses the importance of story sharing to help build a just and healthy world and steps to help you craft your story.
Thank you to our sponsors, Amneal and Kyowa Kirin, and to all of the generous donations that help support BGF programs.
Some medications for Parkinson’s increase dehydration risk, so be sure to drink plenty of water. Aim for eight 8-ounces glasses, or half your body weight in ounces of water (i.e. if you weigh 200 lbs, try to drink 100 ounces of water per day). Avoid sugary drinks, caffeinated beverages, and alcohol.
If you can, stay indoors between 10am and 4pm when the sun is at its hottest. If you do go outside, make sure you stay in the shade and in places with good air flow as often as possible.
Avoid using heat generating appliances, such as the oven, dishwasher, washer and dryer. Close your curtains and blinds and turn on your bathroom fans and kitchen exhaust fan, which pull hot air out of your house. Swap out your sheets for cotton or other cool fabrics and sleep in rooms that are located on the lowest floors of your home (heat rises!). Let the cool night air in by cracking your windows before bed.
If you don’t have air conditioning at home, consider visiting a library, movie theater, community center, or mall. Many urban areas also set up cooling centers for people to wait out the heat. If you live in the Portland metro area, check out this list at the KOIN website.
Many Parkinson’s symptoms can worsen in the heat. Be sure you have the prescriptions and over-the-counter medications you need at home so you don’t have to venture out in the heat wave. If you do run out, consider home delivery services for prescriptions and over-the-counter medication needs during a heat wave.
If you must venture out, make sure your skin is protected. People with Parkinson’s have an increased risk of melanoma, so sun protection is very important. Use a broad spectrum sunscreen with values of SPF 15 or higher and reapply every two hours. Avoid going out from 10am to 4pm when the sun’s rays are most intense, seek shade, and wear clothing to cover exposed skin.
Heat stroke is a life threatening condition that requires immediate medical attention. Watch for signs of heat illness, which may include cool moist skin with goose bumps, heat cramps, excessive sweating, dizziness, feeling faint, fatigue, nausea and headache. Read more about heat illness on the Mayo Clinic website.
Restock your emergency supply kits and have a plan in place for a possible power outage, including having a secondary location to stay cool. If you or a loved one has medical equipment that requires electricity, make sure you have a backup power supply.
We’re big proponents of exercise—it’s essential to living well with Parkinson’s! During a heat wave, plan to exercise indoors and with cooling. Fans, air conditioning, cold packs, and cool washcloths are essential for exercising during a heat wave. If you feel you must go outside, plan to do so early in the morning or late in the evening when it will be cooler.
If a friend, relative, neighbor, or loved one has Parkinson’s, it is extremely important to check in with them during very hot weather. Call, text, arrange a visit! Offer to go shopping or pick up a prescription. Together, we can all stay safe!
In case you missed our exciting news, The Brian Grant Foundation (BGF) has formed the first-ever Portland to Coast Relay Team made up of a diverse group of people living with Parkinson’s disease and their loved ones. Parkinson’s disease is the fastest growing neurological condition in the world, impacting over 10 million people of all ages, backgrounds, and identities. BGF is determined to show the diversity in the Parkinson’s community and to share the stories and voices of those who are living with this disease but are often underrepresented in research and advocacy.
Together, we’ll be trekking 130 miles from Portland to Seaside on August 26 and 27, 2022. Six of us are living with Parkinson’s disease, a movement disorder that impacts balance and coordination, causes slowness of movement, muscle stiffness, and tremors. Our team includes women, people of color, single parents, and people with young onset Parkinson’s disease. The other six team members are care partners, loved ones or advocates. The team is being led by BGF’s founder and former NBA icon, Brian Grant.
During his 12‐year NBA career, Brian played for five teams and became a strong contributor to his surrounding communities. In 2006, Brian retired from professional basketball. Only two years later, he was diagnosed with young onset Parkinson’s disease at age 36. He started the Brian Grant Foundation to help people with Parkinson’s lead fulfilling lives.
Katrina is the executive director of the Brian Grant Foundation. She has nearly two decades of experience in public health, including a previous role at The Michael J. Fox Foundation for Parkinson’s Research, where she met Brian. Katrina holds a Master of Public Health from the University of California, Berkeley and a Bachelor of Science (High Honors) in Biology from Portland State University.
Heather was diagnosed with young onset Parkinson’s disease in 2011. She is the founder of Kathleen Kiddo, an advocacy site offering resources and connection through candid and interactive presentations. An entertaining speaker known for her unique talks and film presentations about living well with Parkinson’s, Heather writes from her home near San Francisco, CA.
An avid lifelong wannabe athlete, Kevin was diagnosed with Parkinson’s disease in his late 40s. In his early stages, he took control of his Parkinson’s with bold irreverence, optimism, and biting humor. As a self-proclaimed amateur “PD satirist,” he has been a speaker and patient advocate for various foundations and has been featured on programs and webcasts. Kevin is coming to grips with his life today as he enters this next stage of Parkinson’s by balancing daily ever-increasing challenges (motor, non motor, societal) with longer term transparency and positivity on the reality of living with this disability.
Michael is an endurance athlete, performance coach and philanthropist. He is a world record holder and the founder of the Twelve Labors Project, in which he performs feats of strength and endurance to raise awareness for causes, including Parkinson’s. Michael is also a US Navy Veteran. As a high school student, Mike was a caregiver for his father, who had Parkinson’s disease.
Diagnosed with young onset Parkinson’s disease in 2018, Todd has been a rowing athlete and coach for over 20 years. He was the alternate for the US Paralympic Rowing Team for the Tokyo 2020 Paralympics and represented the US at the 2019 World Rowing Championships, finishing 6th place in the PR3 Men’s Pair event. Todd is currently training to represent the US at the 2022 World Rowing Championships.
Jenny is a physical therapist at Oregon Health & Science University who specializes in neurological diagnoses including Parkinson’s disease. In addition to clinical care, she also seeks to enhance outcomes by assisting in several clinical intervention studies at the Balance Disorder Laboratory. Jenny has been a volunteer with the Brian Grant Foundation for more than a decade.
Kerry Rae’s husband Harry was diagnosed with Parkinson’s disease at age 47 — Kerry Rae had just turned 40. After taking stock of what was important to them, they sold their possessions and backpacked around South America. Two years later Harry had a massive stroke while undergoing deep brain stimulation; in an instant Kerry Rae became his full-time caregiver. Optimism, laughter and support from others helped them cope until Harry passed away three years later.
Brian’s oldest child, Amani, was 12 years old when his dad was diagnosed with young onset Parkinson’s disease. Amani is a student at Portland State University and works with an organization that helps people experiencing houselessness in Portland, Oregon. Amani also supports his dad and volunteers with the Brian Grant Foundation.
In 2018, Amber was diagnosed with young onset Parkinson’s disease. Amber is an advocate for people with Parkinson’s; she uses dark humor and sarcasm to increase awareness of living with young onset PD through her wildly followed TikTok page @notthefakeamber. She is a “boy mom” with two sons who lives in El Paso, TX.
Jenn is a supportive care partner that likes to make life fun while dealing with all that Parkinson’s can throw one’s way. She is the care partner to Kevin Kwok. She has been a vocal patient advocate for her own Lyme’s Disease and combining this with her experience of living with Kevin and his PD, she brings a daily empathy to being a care provider. Coming from a professional career in philanthropy, Jenn approaches PD caregiving as a ‘full time contact sport,” just as she excelled in her past career.
Gigi was diagnosed with Parkinson’s in 2017—rounding out an 18-month period she jovially calls her “medical trifecta.” Before her PD diagnosis, Gigi had recently undergone spinal fusion surgery and fought breast cancer. Through it all, Gigi remains fiercely optimistic. She enjoys pilates, hiking, skiing, and time spent with her husband, three children, and two dogs. She is also a member of OHSU’s Parkinson’s Patient Advisory Committee.
