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.
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.”
Update!
We checked in with Steve and Susi who shared this lovely update:
Susi and I bought a house and we have traveled quite a bit. I am so happy to have a partner to share these experiences with. We got engaged in the summer of 2023 while in Rome. We were married in November of the same year and went on a cruise to the Bahamas for our honeymoon.
Susi is a true empathetic care-giver and I do my best to help her in raising her children that are now 12 and 15 years old. We feel we have a wonderful relationship and our only regret is that we did not meet sooner. My Parkinson’s diagnosis was not the end of a wonderful life, it was actually the beginning.
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Ways to Set & Keep Goals While Living with Parkinson’s
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.
Here are our top tips for setting and keeping goals while living with Parkinson’s:
Tip #1: Set Realistic Goals
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!
Tip #2: Keep Your Goals Time Bound
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!
Tip #3: Define Your Barriers & Create Accountability
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!
Tip #4: Track Your Progress
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.
Tip #5: Share Your Success
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.
Amber Hesford was only 35 years-old when she was diagnosed with Young Onset Parkinson’s in 2018. Her sons were seven and nine. To help her cope with her diagnosis and find community, Amber’s dad suggested she share about her journey on the social media platform TikTok. In the past four years, her audience has grown to nearly 100K people from all over the world.
“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.
Many people living with Parkinson’s disease experience worsening symptoms in hot weather. As we continue to experience more heat waves and extreme weather, it’s important to be prepared! High temperatures can pose significant health risks for people living with Parkinson’s.
Stay hydrated
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.
Stay indoors
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.
Keep your home cool
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.
Find a cooling center
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.
Ensure you have enough medication
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.
Protect your skin
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.
Watch for signs of heat illness
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.
Prepare for power outages
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.
Plan exercise carefully
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 you know someone who has Parkinson’s…
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.
MEET THE TEAM!
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 Kahl
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 Kennedy
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.
Kevin Kwok
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 McCastle
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.
Todd Vogt
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 Wilhelm
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 Connolly
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.
Amani Grant
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.
Amber Hesford
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 Rohl
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 Van Rysselberghe
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.
PORTLAND—The Brian Grant Foundation (BGF) is forming 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.
In a true feat of endurance, perseverance, and mind over matter, 12 walkers will be trekking 130 miles from Portland to Seaside on August 26 and 27, 2022. Six of the walkers have Parkinson’s disease, a movement disorder that impacts balance and coordination, causes slowness of movement, muscle stiffness, and tremors. These walkers include 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 will be led by BGF’s founder and former NBA icon, Brian Grant.
“Living with Parkinson’s brings a variety of challenges but many people don’t really understand the disease,” says Brian. “I’m excited to be a part of a team working together to increase awareness of Parkinson’s and help break down the stereotypes associated with the disease.”
The journey will be documented through video to help raise awareness of the broad impact of Parkinson’s disease. Walkers and care partners will also be featured in the second season of BGF’s podcast, On Time: A Parkinson’s Podcast, airing in fall 2022.
“Thanks to the many people who support our programs, we’ll be sharing this experience every step of the way,” says Katrina Kahl, Executive Director at the Brian Grant Foundation. “We want people to see that the Parkinson’s community includes women, people of color, single parents, young people and LGBTQ+ folks. It’s important that their voices and stories are told, too.”
