An early-onset Parkinson’s diagnosis was a life-changing experience for 45-year-old Todd Vogt, but it didn’t stop this elite athlete from representing the U.S. at the 2019 World Rowing Championships.

One of the biggest highlights this year for Todd Vogt was when he placed sixth in the PR3 Men’s Pair category with rowing partner, Andy Wigren, at the 2019 World Rowing Championships, held from Aug. 25 to Sept. 1 in Austria.

Over the years, Vogt has brought home handfuls of medals while competing at national rowing championships. Representing the U.S. at the World Rowing Championships was the culmination of a decades-long rowing career that began in 1992 when Vogt was a freshman biochemistry major at the University of Buffalo in Buffalo, New York.

Naturally athletic, Vogt had excelled at baseball, soccer, tennis and other sports in high school but never considered rowing until he saw a flyer at his dormitory offering a fun, new way to “get fit and make friends.” So, he went to an informational meeting. There, the coach played a video that had Vogt instantly awestruck.

“I watched all these boats they raced, and after they crossed the finish line, they were slumped over their rows exhausted. I thought, ‘I could do that for myself.’ A big part of being successful at rowing is pushing yourself hard. That is what hooked me right off the bat – the physical and mental challenge,” he said.

In 2001, Vogt and his wife, Heather, relocated to Portland, Oregon, where he began working in various labs at Oregon Health & Science University. In 2005, he started coaching rowing part-time at the Lake Oswego Community Rowing Club in Lake Oswego, Oregon. In 2009, he stepped away from his career in science to coach rowing full time.

Ten years later, at the age of 45, Vogt found himself slumped over his row exhausted after crossing the finish line during the 2019 World Rowing Championships. Not only was this his first time representing the U.S. on a global scale, it was also Vogt’s most ambitious and challenging competition since his Parkinson’s diagnosis one year earlier.

Tokyo or bust

Vogt first noticed something was wrong with his health in the fall of 2017. “Rowing is engrained in my brain like a golf swing or a tennis swing. I practiced for 20 years how to row exactly as you should row. Suddenly, I couldn’t do that anymore. I felt weak, but in a weird way,” he said. “At first I thought I was just getting older and needed to train more.”

But then he noticed that his arms no longer swung naturally as he walked; his left arm just sort of hung there. Then came a subtle tremor in his left hand. With his health continuing to worsen, Vogt knew by the spring of 2018 that it was time to get to the bottom of it.

“I knew something was wrong with me, but I didn’t know what,” he said. “Everything seemed to come back normal with blood, hormones, electrolyte levels – and that’s when I knew something was very wrong. Finally, after months of diagnostic testing and eliminating all other possibilities, they determined it was Parkinson’s.

Anxiety and depression set in, which is common for many people with Parkinson’s who are newly diagnosed and unsure of what the future will entail. “It didn’t seem like my life was over, but it definitely felt like my life would become significantly diminished,” Vogt said.

“One of the things I’ve always prided myself on being able to push my body hard. Before I was like a car that has six gears. I could get to the sixth gear and go really fast. Now I feel like a car that only has three or four gears. I lost that ability to push myself to the edge. My brain felt like I couldn’t do that to myself anymore.”

One of the most frustrating things that happened post-diagnosis was having to recreate his rowing stroke. “I felt like I had to relearn how to row, which was frustrating because I had rowed for 20 years and developed a good mastery of how to do it. Then to suddenly have to start over and relearn from scratch? That was a depressing challenge and something that still drives me crazy sometimes,” Vogt admitted.

Fortunately, exercise is one of the best ways to combat Parkinson’s symptoms, and it happens to be one of Vogt’s favorite pastimes. “My Parkinson’s-induced anxiety goes away and my body just seems to work a lot better after I work out. I do feel more stiff and rigid, so I have to spend a lot more time working on my flexibility than I had before,” he noted.

Vogt, who said he has been training harder than he ever has before, now has his sights set on a new goal: landing a spot on the U.S. Paralympics Team and competing in Tokyo next summer. “The competition is pretty good, but I think I have a real chance,” he said.

“The most important thing I’ve come to realize is there are still good things out there for me. There are still things that I enjoy doing. I can still work out, I can still row, and I can still get a lot of enjoyment out of life for a long time.”

Below is the full video from the Expert Q&A: Gut Health & Parkinson’s with Dr. Bethany Tennant on March 9, 2021.

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

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This Expert Q&A and Chef Kenny James’ Miso Salmon with Thai Slaw recipe and cooking demo are part of our 2021 Nutrition Series featuring Dr. Bethany Tennant, naturopathic physician and certified nutrition specialist, and Chef Kenny. In July and September 2021, together they will provide practical tips and recipes to help people with Parkinson’s gain the benefits of a nutritious diet that aligns with the healthy eating guidelines developed by BGF.

Being a care partner for someone living with Parkinson’s disease can be just as rewarding as it is challenging. We asked Melinda Sych, Brian Grant Foundation board member, how she and her husband, Troy, keep their relationship going strong.

When a partner or spouse is diagnosed with Parkinson’s disease (PD), stepping into the role of care partner can be a big change and may eventually take a mental, physical or emotional toll. On the flip side, it can also strengthen the relationship and prompt a newfound appreciation for the fragility of life.

“You can let Parkinson’s disease change your life in a positive way or in a negative way. We choose to let it change us in a positive way,” said Melinda Sych of Vancouver, Washington. “Time is not infinite when you have Parkinson’s. Life becomes more precious, and we value the time we spend together more than we did before he retired and some of his symptoms progressed.”

Melinda and her husband, Troy, have been married since 2012. Troy was diagnosed with early-onset Parkinson’s disease toward the beginning of their courtship. But that didn’t stop the couple from blending their families, going on fun adventures and building their dream life together.

We asked how she and Troy have kept PD from interfering with their nearly 10 years of marital bliss, and she offered the following advice.

Do your research.

“Educate yourself as best as you can. The progression of Parkinson’s comes in steps and waves. You’ll be fine for six months, then suddenly there is a big step change. Things like body language, facial expression and vocal tone are not the same. If you don’t have that foundation to fall back on, it can be challenging. We navigated through it, but it would have been nice to know those things ahead of time,” Melinda said.

Make friendship a priority.

“My husband and I have an amazing friendship, and that has helped us navigate through these changes. We have a great sense of humor, and let’s be honest – PD requires a great sense of humor. You need to be able to weather some of those darker moments of PD with a laugh. It’s a roll-with-the-punches kind of approach,” she said.

Have an open dialogue.

“We were really proactive in having some of those more difficult conversations almost from the very beginning of our relationship. I would encourage everyone to do that early on whether they have Parkinson’s or not because you never know what’s going to happen. It’s just healthier in my opinion for any couple to proactively plan for the long term,” Melinda advised.

Know when to ask for help.

“You don’t always know when you are needed to be a caregiver and when you are needed to be just a regular partner. As the disease progresses, it becomes harder for them to ask for help. As the caregiver, you need to be able to step in and ask for help on their behalf. That sort of thing can be a challenge to figure out, which is why communication is so important,” Melinda said.

Keep your children in the loop.

“Make sure communication with your kids is meaningful and clear. At first, they don’t see the symptoms; everything looks the same. They don’t understand some of these new behavioral changes that come as the disease progresses or with the medications. If you are not talking openly and honestly with your kids about those changes, it can be a harder adjustment for them. There needs to be more resources for helping children of people with PD,” she said.

Stay active together.

“Staying active helps you maintain a sense of control. There are physical challenges associated with Parkinson’s that forces you to change your lifestyle. If you’re an active person, you need to be flexible and build new activities into your life. It’s important to replace those activities you can no longer do with things that are also active. We have a home gym and a pool. We spend time working out together and also stay active with projects at home and in our garden,” Melinda said.

Find your tribe.

“It can be a huge benefit to get to know other couples who are going through the same thing. We started engaging with other people who had been diagnosed and were in our same age group. They are a blessing in my life and a pleasure to spend time with. I got to know other spouses of Parkinson’s patients and learned a lot of things that you may not necessarily hear from a doctor, such as which medications to stay away from,” she said.

Don’t let PD control your life.

“It’s important to remember that there are a lot of amazing years left in your life that can be high quality, and if you do the right things like exercise consistently and eat healthy, you can make that last a lot longer. Troy and I both try to live the best lives we can live. And I think everybody should aim for that, whether you have Parkinson’s or not.”

Watch the recording of our Expert Q&A: Environmental Advocacy with Ted Thompson, senior vice president of public policy at The Michael J. Fox Foundation, and Senior Attorneys Patti Goldman and Jonathan Kalmuss Katz from Earth Justice from February 9, 2022.

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

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Thank you for joining us!

Below is the full video from the Expert Q&A: Preventing Parkinson’s with Ray Dorsey, MD on February 9, 2021.

Resources:

Parkinson’s Policy Forum
Registration is open until March 17 for the Forum, happening on Monday, March 22 through Thursday, March 25, 2021. This free virtual event will bring together community members and researchers from across the country for research updates, policy briefings, advocacy trainings and networking opportunities.

PD Avengers
PD Avengers is a global alliance of people with Parkinson’s, partners and friends, standing together to demand change in how the disease is seen and treated.

Ending Parkinson’s Disease
This book, published in March 2020, includes evidence regarding environmental exposures and Parkinson’s and an action plan to help prevent the disease. You can purchase the book from your local book retailer, including Powell’s books in Portland.

Michael J. Fox Trial Finder
Search how to find studies looking for volunteers through the Michael J. Fox Trial Finder.

EPA Superfund Sites
Search for superfund sites where you live.

Kids of Parkinson’s Roundtable Recording
Jaydon Grant, Manju Bangalore and Mike McCastle shared their stories about having a parent with Parkinson’s on Thursday, February 11 as part of our Kids of Parkinson’s program.

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

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This recipe is part of our Plates for Parkinson’s, presented by Market of Choice, cooking video series. It is brought to you by Chef Kenny James. Check out more Plates for Parkinson’s recipes here. Thank you Market of Choice for your support!

When you meet Kat Hill for the first time, you feel her energy and joy for life. It’s undeniable.

Kat lives in Portland, Oregon and was diagnosed with young onset Parkinson’s in 2015 at the age of 48. At the time she was the director of midwifery at Emanuel Hospital and had lots of action to fill her time – kids, family, and a career she had worked very hard to achieve. She delivered more than 800 babies in her time as a nurse-midwife.

Kat has since retired from her career as a midwife to focus on writing and speaking about wellness and striving to make lemonade out of lemons. Her refreshing take on finding joy is the topic of her podcast, called PD Lemonade. Now in its second season, PD Lemonade focuses on deep conversations about interesting Parkinson’s topics. As she says in her podcast intro, Kat has “chosen to focus on the sweetness she has found, instead of dwelling on the sour.”

Kat’s optimistic perspective is in large part due to her Parkinson’s diagnosis, which has helped her learn to focus on what she can do and not give up.

She and her good friend Nancy Peate, who is also living with Parkinson’s, have a wellness model they call the “Wellness Spiral”. It is a spiral with a narrow bottom and great expanse on the top, think tornado shape. The tight circular bottom is the rabbit hole of negative thoughts. Kat says, “The more we practice getting out of that mentally, the better off we are, the more expansive our lives are, and the more well we can be with intention.”

Kat and Nancy are about to release their first book, called Being Well: A Guide to Finding Joy and Resilience with Chronic Illness. The book is a self-help guide for those living with a chronic illness to help them find pathways to wellness. “This book is for anyone who is at a crossroads and wants to find ways to build resilience.”

Kat believes in doing something for her mind, body and spirit every day. She works out regularly, paints, and consistently is sketchbook journaling.

“I am not and never have been a big sit-arounder,” she said.

She and her husband, Ken, are also taking on a new project this year of selling their family home and hitting the road in their Airstream trailer. They will be documenting their journey on Instagram at @216PNW if you want to follow along!

Stress is common in Parkinson’s. Mindfulness practice has been shown to help reduce stress and support mental health for people with Parkinson’s.

If you’re new to mindfulness, a body scan practice is a great place to start. A body scan practice helps you connect your mind, body and breath. “Body Scan Meditation” by Jon Kabat-Zinn, PhD, is available online and guides you through the practice, which invites you to bring awareness to the feelings and sensations of your body as you mentally scan it from head to toe.

Before you get started, make sure you’re wearing comfortable clothing. Find a comfortable place to lay down with few distractions. You may also need a pillow under your back or legs.

As you do the practice, if your mind starts to wander, that’s totally normal! When you recognize that your mind has wandered, gently bring it back to your breath.

Once you’re comfortable, the practice is a guided script following these same steps each time:

1. Bring your attention to the fact that you are breathing. Directing your focus on your belly as you inhale and exhale. Notice the rhythmic movement of your belly and sink deeper into the floor or mat. Stay attentive to your breathing in each moment.
2. Take your mind away from your belly down your leg, out to your toes. Starting with your left toes, foot and leg, become aware of any feelings and sensation. With each breath, experience what’s there. Image your breath, following it from your nose to your belly, to your toes and back up, out your mouth.
3. Dissolve this part of your body and move your attention to the right side starting with your toes, foot and leg. Breathe, feel and experience each sensation, whatever it may be.
4. Follow the pattern of slowly breathing, feeling, and paying close attention to sensations, gradually move up through the legs to the lower back and pelvis, mid and upper back, stomach, chest and heart region, hand and fingertips, arms, shoulder and throat, and end with your scalp, head and face.
5. As you move your attention from each region, breath into the feeling, and as you breath out, let it all go. And then move on.
6. In the end, let your attention expand to include the entire body as one. Feel the gentle rhythmic breathing, take one full breath in and exhale completely. Wiggles your toes and fingers and slowly open your eyes. Reorient your attention to the present moment.

Once you’ve tried the body scan, if you’re interested in learning more, check out these other resources:

Weekly “Breath by Breath” Sessions every Tuesday | 11:30 am-12:30 pm PT | Zoom – Events

8-Week Mindfulness-Based Stress Reduction Course Spring and Fall courses – Events

How Mindfulness Helps Parkinson’s – Read

Emotional Stress and Mindfulness in PD – Webcast

We first met Marlene Kendrick in 2019 when she and her partner, Jack, hosted a small concert in their living room benefitting the Brian Grant Foundation. Since being diagnosed with Parkinson’s in 2018, Marlene has been a solid supporter of BGF and today she’s a dedicated member of our Program Advisory Committee.

A lot has changed for Marlene since 2019. After 20 years in the medical field as a diagnostic ultrasound technician, she retired in April 2021. The last year of her career looked a lot different than she expected because of the Covid pandemic. The pandemic helped her come to a final decision to retire, something that she was planning for and anticipating. “I knew the time was right,” Marlene said.

After retiring, Marlene quickly filled her time with activities she loves, like gardening, cooking, and traveling. Her and Jack finally got to take a long overdue and twice postponed diving trip to the Caribbean. The trip had been Marlene’s dream for the last five years since getting her dive certificate. But a breast cancer diagnosis at that time meant she had to delay any further diving until after treatment.

Shortly after, Marlene was diagnosed with Parkinson’s. Then came the pandemic and her dream trip was once again postponed. So when the opportunity to spend two weeks in the Caribbean came together this fall, Marlene wasn’t going to pass it up. “I’m going to get out and dive again,” she thought.

When she’s not traveling or enjoying her hobbies, Marlene and Jack spend time on their forested property outside of the Portland area to camp, clear the land and hike, kind of like “homesteaders.” She says it feels like “family and heartwarming” to be there, outside, visiting safely with others in the pandemic.

Marlene says, “I don’t think about my PD often, but I’m always aware of it. I’m always challenging myself to keep it at bay as long as possible.” She takes the opportunity to learn new things, like teaching herself how to sew and crochet. Marlene also works out consistently five days a week. She said exercise is one of most important things in her life, even before her PD diagnosis.

Marlene also committed fully to the Brian Grant Foundation Program Advisory Committee (PAC). Marlene wanted to give back in a way to help others who are living with Parkinson’s. She said she’s excited to be a part of PAC to help provide suggestions and guidance and to be involved in events and fundraisers.

To learn more about Marlene’s fundraising efforts, read Meet Marlene: Rockstar Fundraiser for BGF here.