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.

WATCH VIDEO

Healthy eating starts at the grocery store. That’s why we’ve developed tips to help you get the biggest – and healthiest! – bang for your buck.

Tip #1 List Your Weekly Meals

Each grocery store trip should start with a list. Here are some tips for putting together your list so you can stay organized and avoid buying what you don’t need:

1. Look in your freezer, cabinets and refrigerator. Make a note of what you currently have on hand. You can save money by using these items in the upcoming week’s meals.
2. Create a list of recipes. Check out the recipes on this website to find new healthy ideas. Be sure to include some of your favorite healthy recipes too!

3. Think about your schedule. As you’re choosing your recipes for the week, make sure you have a few meals that you can prepare easily on your busiest days. Save recipes that take longer for days off.

3. Use a worksheet. Now that you have a list of recipes, create a worksheet that lists your weekly meals and the ingredients you’ll need. Then check it against what you already have and you’ve got your grocery list!

Tip #2 Stock Your Pantry With Staples

A well-stocked pantry can take a lot of fuss out of your weekly shopping trip. Pantry items can often be stored for longer periods of time in a cool setting away from sunlight – but make sure you check instructions and expiration dates. Here are some ideas to consider for your pantry:

1.  Spices: Turmeric, oregano, rosemary, ginger, Ceylon cinnamon, sage, cilantro, parsley, thyme, basil
2. Nuts: Pistachio, almond, walnut, macadamia
3.  Fats: Coconut oil, olive oil, avocado oil
4. Seeds: Pumpkin, sunflower, flax, chia and hemp
5. Whole Grains: Oats, oatmeal, brown rice, quinoa, buckwheat, barley
6. Legumes: Garbanzo, black, pinto, kidney (buy in bulk and soak your own!)

Tip #3 Shop the Perimeter

The outside aisles of grocery stores are where you’ll find whole, unpackaged foods. Produce and fish can be found around the perimeter of the store and here’s some foods you can load up on:

1. Veggies: Broccoli, onions, garlic, Brussels sprouts, cauliflower and cabbage are great options that can store well in a refrigerator.
2.  Leafy Greens: Kale, spinach, arugula, field greens and Romaine lettuce are just a few options for getting leafy greens into your daily diet.
3. Berries: All berries, fresh or frozen, are loaded with antioxidants and a great pick for a sweet snack.
4. Brightly-Colored Produce: Choose a variety of colored produce to get a variety of nutrients! Peppers, mango, citrus fruits, sweet potatoes, beets and tomatoes are just a few examples.
5. Fish: Choose fish that is high in Omega-3 fatty acids and low in mercury, such as salmon, anchovies, sardines, herring, mackerel.

Tip #4 Read the Ingredients

1. Watch out for sugar. Check to see if sugar, juice, or a word ending in 
-ose is in the top five ingredients (keep in mind that 3 grams of sugar is equal to 1 teaspoon).
2.  Watch out for artificial ingredients. Can you pronounce all of the ingredients? That’s a great way to recognize artificial ingredients. Also note that the term “All Natural” is unregulated, so products can be labeled as such without any verification.
3. Look for a short list of ingredients. If you’re buying packaged foods, try to look for products with 5-10 ingredients.
4. Watch your percentages. Don’t let “2% or less of the following” confuse you. This phrase means that each of the following ingredients can constitute at least 2% of the volume of the product NOT that all of the following ingredients combined are less than 2% of the total.

Tip #5 Shop Smart & Make Your Dollar Stretch

1. Eat before you shop. Grocery shopping hungry can lead to impulse buying and unhealthy food choices.
2. Read the sales flyers. Sales flyers are usually released mid-week and can be found at the store’s entrance, in the newspaper, or on their website.
3. Use coupons. But only for items that you know you’ll use. If you don’t need an item right away, save the coupon and see if it goes on sale.
4. Look up and down for savings. Stores often stock the priciest items at eye level. You can save big by looking at the upper and lower shelves too.
5. Check for store brands. Most stores offer their own brand of products that often cost less than name brands.
6. Grab from the back. Stores typically stock shelves from back to front, placing the newest items behind the older ones. Reach in the back for the freshest items especially in the produce, dairy, and meat aisles.
7. Ask for a rain check. If a sale item has run out, ask the store for a rain check. This allows you to pay the sale price after the item is restocked.
8. Join the store’s loyalty program. Most stores offer a free loyalty program. Get special offers and discounts that non-members do not.
9. Read the unit price on the shelf tag. One product might be cheaper overall, but that could be because you are actually getting less. Make sure you check for the lowest unit price.

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!

I spy with my little eye something that begins with the letter “E.” If you have kids or grandchildren chances are you’ve played that game. For me, the thing that begins with “E” is eyesight.

Without my contacts or glasses I’m legally blind. That big “E” on the eye chart isn’t visible to me (truth be told, neither is the wall). These days my myopia isn’t a problem. I wear my contacts during the day, and my glasses at night. It’s a routine I’ve followed for more than 40 years.

Now that I have Parkinson’s, someday the routine will change. A few scenarios could take place. My hands could tremor enough to make it impossible to wear contacts, my head could start shaking making corrective lens surgery risky, or both could happen.

The easiest solution would be to abandon the contacts and wear glasses for the rest of my life. I don’t like that option. I prefer life without them.

How will I know that my hands are tremoring too severely to safely handle contacts? How will I know if my head is moving too much and I’m no longer a candidate for corrective lens surgery? How will I know which surgical procedure, LASIK or full lens replacement,is right for me?

Fortunately, I tackled these questions shortly after my diagnosis. I see at least one of my doctors once a month. If one of them notices that I’m tremoring more than usual they have been instructed to call my neurologist. He will make the decision about whether it’s time to fix my eyes.

I’ve decided against LASIK because sometimes the procedure needs to be touched up.

But there’s a statistic that weighed heavily in my decision to abandon the LASIK option. According to the Alzheimer’s Association 50-to-80 percent of all Parkinson’s patients experience dementia as the disease progresses. If I needed a LASIK touch up, develop cataracts, and have dementia, how will I know that something is going wrong with my vision?

Cataracts should be a concern of all seniors, and they should be of particular importance to those of us who have Parkinson’s. According to the Kellogg Eye Center at the University of Michigan 90 percent of all people over the age of 65 have a cataract, and those between the ages of 75 and 85 have some vision loss due to cataracts.

If a Parkinson’s patient has dementia, how will they know (and communicate) that their vision is impaired?

I’ve decided that when it’s time, I’m going to have my natural lenses removed because cataracts cannot form on an artificial lens. I think that given the options available to me today, lens replacement is my best option because new lenses will provide me with good vision through the rest of my life. Like all of us, as I progress with the disease I’ll have plenty of other things to worry about. The ability to see clearly shouldn’t be one of them.

I spy with my little eye something that begins with the letter “P.”

“Plan” ahead for the day when you’ll need clear vision to make decisions about other things in your future.

Kevin Woo is a freelance writer based in San Francisco. You can follow him on Facebook or visit his website at www.kevinjwoo.com.

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.

The season of giving is here! If you’re looking for a thoughtful gift for a loved one with Parkinson’s, we’ve rounded up a list of ideas from our program advisors, who are living with the disease. Here are the top five most requested items this year:

1. Think exercise! Any kind of exercise equipment like a yoga mat, fitness tracker or reflective gear can make thoughtful gifts with many inexpensive options available. Or if you’re looking for something bigger, exercise machinery like a rower or recumbent bike helps your loved one get aerobic activity from the comfort of their home.
2. Comfort is key! Easy to wear clothing like slip on shoes, no button/zipper shirts, or faux jean, slip-on pants can help your loved one be comfortable. Or go for luxury with items like satin pajamas and sheets.
3. Self-care is a must have. Gift certificates for a massage or acupuncture can help your loved one unwind. Food delivery services, like a Hello Fresh subscription, can support a healthy diet while saving time in the grocery store and kitchen. Or if your loved one likes to engage in a little retail therapy, give them a gift certificate to their favorite store.
4. Practical is appreciated. Easy to use everyday gear like a pill box, shoehorn, fanny pack or sling bag can provide practical support to your loved one with Parkinson’s. There is also adaptive equipment to make eating and cooking a little easier. Check out our videos on eating and cooking to learn more about what’s available.
5. And the number 1, most requested item this holiday season, trekking poles! Often thought of as a hiking accessory, trekking poles can be used any time you go for a walk. They can also provide stability with at home exercises, such as static lunges. Trekking poles are a great way to increase aerobic activity while encouraging upright posture.

Bonus Idea!

A donation to the Brian Grant Foundation in honor of your loved one will help us give you – and many others – the gift of living well with Parkinson’s all year long. And this holiday season, you can send an ecard to your loved one to let them know that you gave a donation in their honor.

The holidays are a perfect time to show caregivers how much you appreciate their help and support all year round. We’ve gathered together a list of gift ideas for these special people who support our community in achieving their goals of living fully with Parkinson’s disease.

This holiday season looks different than the others. We are usually busy with holiday parties and visiting family and friends. But due to Covid-19, gatherings and travel could be limiting. We can still acknowledge our loved ones and caregivers with gifts given safely and from afar. Be sure to practice safe Covid-19 guidelines when looking at purchasing from the list of ideas below.

Give Time

1. Say bye-bye to dust-bunnies. With everything else going on, sometimes cleaning house can fall to the bottom of the priority list. Give your caregiver back some time and energy with a gift card for a house cleaning service.

2. Answer the dreaded “What’s for dinner?” question with a subscription to a meal service. Companies such as Sun Basket and Green Chef provide fresh, ready-to-cook meals that you can customize to your particular tastes and nutrition needs.

3. Got a slow drain? Furniture that needs to be assembled? New shelves to install? A gift card to a service company such as TaskRabbit can help knock those lingering household chores off your caregiver’s to-do list.

Give Relaxation

4. Massage has been proven to reduce stress and improve well-being. Give your caregiver an hour of bliss with a gift certificate from a massage therapist in your area.

5. Help caregivers put their best foot forward with a deluxe mani/pedi. Because fingers and toes need attention, too.

6. Wrap your caregiver in warmth with a quality shoulder and neck heating pad. This top-rated pad on Amazon Smile is microwaveable and lavender-scented for extra relaxation. (Choose Brian Grant Foundation as your charity on Amazon Smile and they’ll donate a portion of your purchase to support our programs!)

Give Comfort

7. Who doesn’t love a little bit of luxury? Give your caregiver some affordable luxe with a pair of cashmere socks. Take it from us, they’re worth it.

8. Sometimes all it takes to unwind is a nice cup of tea. A subscription box from The Republic of Tea or a holiday set from Portland’s Stash Tea will ensure your caregiver is sipping pretty all year long.

9. Who doesn’t love a nice, thick robe? Upgrade your caregiver’s shower game with a fleece robe like this top-rated version on Amazon Smile. It’s like a hug you can wear all morning.

Give Love

10. Let’s face it, being a caregiver can be hard work. Show how much you appreciate this person with a gift of your attention. Take your caregiver out to dinner or make a special meal at home and spend time listening. Time equals love and love is the greatest gift of all.

Bonus Idea!

A donation to the Brian Grant Foundation in honor of your caregiver will help us give you – and many others – the gift of living well with Parkinson’s all year long.

For most couples, a Parkinson’s diagnosis will send the relationship down a new path, with each person experiencing their own set of challenges.

The person with Parkinson’s may struggle in the relationship as symptoms worsen and they lose the ability to do certain things. Their partner may struggle as they move further into the role of caregiver.

As important as it is to continue a normal life together, couples should prepare for the inevitable changes that are part of the overall picture of Parkinson’s. Whether you are a person with the disease or their partner, learn how to meet those challenges head on with honesty and compassion.

Relationship tips for people with Parkinson’s

If you’re living with Parkinson’s, changes to your mental and physical health are inevitable and sometimes embarrassing. You worry about maintaining a sense of dignity and control. You worry how others perceive you. You worry whether the disease is taking a toll on your relationship with your partner.

It’s perfectly natural to feel this way, but understand that you are not alone. There are millions of people around the world who are going through the same struggle. You have friends and family offering a network of support. Best of all, you have a loving partner who thinks you’re amazing no matter what. Together, you can get through this.

Here are a few tips to help you out:

1. Talk about what you’re going through.

Keeping things bottled up inside is never a good idea. Speak openly and honestly about your feelings and hardships to your partner. Keep them aware of any mental or physical changes you might be experiencing. Communicating is harder for people with Parkinson’s as symptoms progress, so don’t be afraid to talk openly with your partner right out of the gate.

Yes, it feels crummy when you lose the ability to do certain tasks. These things happen, and when they do, your partner won’t mind assisting you. They love you. It’s human instinct to want to protect and care for your loved ones. Doing things to help others is incredibly fulfilling. That’s why your friends and family won’t mind helping you out when your partner is unavailable. They love you too.

2. Be respectful of your partner’s experience.

You know firsthand it’s not easy having Parkinson’s, and caring for someone with the disease has its challenges as well. Remember to put yourself in your partner’s shoes and be mindful of their own struggles in and outside of the relationship. Be empathetic to their needs. Don’t take it personally when they need time or space to themselves.

3. Don’t let Parkinson’s dominate the relationship.

Parkinson’s is a part of you, but it doesn’t control you, nor should it control the relationship you have with your partner. You are still the same person they fell in love with. There’s a reason why they’ve stuck with you through good times and bad. Does Parkinson’s have to be the main topic of conversation between you all day, every day? Probably not.

Relationship tips for Parkinson’s loved ones

Being in love with someone with Parkinson’s disease comes with an assortment of emotions. Some days, you might feel loved and appreciated—possibly a sense of pride in being the main source of care and support for your partner. Other days, you might feel overwhelmed, sad or angry at the situation—maybe even frustrated with your partner.

These feelings are natural and nothing to be ashamed of. You are in the difficult position of providing care and support for a person who will become increasingly dependent on you, and that person also happens to be someone with whom you are romantically entwined.

Despite the complexities of this commitment, it helps to remember that honest communication, patience and understanding are usually all that’s needed to keep most relationships healthy and long-lasting.

Here are some tips to help you out:

1. Do your homework.

Learn everything there is to know about Parkinson’s disease, including symptoms, treatments, side effects and care options. It’s never too soon to be your partner’s advocate and help them plan for the future. Know the limitations of your partner’s medical coverage. Have a clear understanding of their insurer’s policies for reimbursement of medical care so you can plan accordingly now and into the future.

2. Stay organized and observant.

Keep a record of your partner’s medications, doctor visits and symptoms to make medical appointments easier and more beneficial. If you start to observe new or worsening symptoms, such as motor function changes, mood/anxiety concerns or speech issues, notify your partner’s medical provider. Your partner may not be aware that these things are happening.

3. Talk about it. Keep those lines of communication open.

Discuss important plans and decisions for the future. Talk about wills, advanced directives and other life issues. Talk about your own feelings and hardships. Admit to your partner when you need a break or some time to yourself, and don’t feel guilty about that. It’s OK to ask family and friends for help, or seek professional in-home care when you need time to yourself.

4. Take care of you.

Your health and state of mind can greatly impact your partner’s, especially as they become more dependent on your care. You need to take care of yourself if you’re going to be able to give the proper love and support that your partner needs. Remember that you have your own life, too. Keep in touch with yourself by pursuing your own hobbies and interests, staying active in the community, and socializing with friends and family.

By Kathryn Jones