This Parkinson’s Awareness month, we received more than 100 keys to living well with Parkinson’s disease (PD) from our community! Find out what Maggie, Nancy and Cindy each do to help them or their loved one manage Parkinson’s.
Maggie's #KeyToPD helps her find balance as a caregiver.
Nancy's #KeyToPD is a travel hack that helps her and her husband at airports.
Cindy's #KeyToPD helps her leave her house every day, on time and prepared.
This Parkinson’s Awareness Month, we asked our Parkinson’s disease (PD) community to share their keys to Parkinson’s with us. We received hundreds of keys to living well with Parkinson’s!
Whether you are living with PD, are a caregiver or a healthcare professional, thank you for sharing your tips that make life a little easier. We will be posting your keys at Parkinson.org/Blog throughout the year but check out our top 10 keys submitted by YOU.
Exercise
“I listen to audiobooks and love good thrillers. I tease myself into exercising by allowing myself the satisfaction of hearing what happens next only when I’m exercising.”
- Patricia
“Create a playlist for walking. My symptoms get worse towards the end of long walks as I tire. By creating a playlist of songs with a good strong walking beat, the muscle memory kicks in and helps my body finish the walk strong instead of dragging one heel and not having one arm swing.”
- Fred
“For me, I have been blessed to be part of the Rock Steady Boxing (RSB) family for the last 3 plus years. Our coaches encourage us to push ourselves to continue to improve our strength, balance, movements, stamina and endurance. We have class 4 times a week and what a great and supportive new family of friends we have in each other! If you had told me that I would be doing a boxing workout at age 71 for an hour 3-4 times a week, I probably would have laughed. Rock Steady Boxing has given me a whole new positive outlook on my Parkinson's.”
- Wayne
Medication
“I use a black container to put all my husband’s medications in when I get them ready for him to take. I used to use little clear plastic cups that fruit snacks come in, but since most of his pills are white or light colored it was sometimes for him to see if he took them all. Then I found some black sauce cups from an Italian restaurant and he said he could see the pills much better against the black.”
- Susan
“Planning. I am the live-in caregiver for my mom with PD. I set aside a few hours one day a month to set up her pills in four, seven-day containers. That way in case something comes up with her or me at least we have her pills ready. I also set alarm timers in her phone and mine for her pill times. Such a big help!”
- Megan
Daily Living
“My key to living well with Parkinson’s is a metronome. When I get up in the morning, I have trouble walking because of freezing issues. It is very frustrating. There are ways to trick your brain into walking, but the best thing I have found is a metronome. The tick, tick, tick helps me to get going. Now I don’t want to carry a metronome around and as they say, ‘there’s an app for that.’ I have it on my phone and it is my key to get my morning moving!”
- Joyce
“I have rather severe tremors and eating gets pretty messy. I find that if I put my plate of food on top of a large bowl, the distance from plate to mouth is much reduced, which makes more food stay on the spoon or fork during that journey. It is a very small thing but for me, it makes a big difference.”
- Carole
“Use supermarket gift cards so you don't have to sign for a credit card or fumble with paper money and coins.”
- Sandra
“To decrease my leg pain/stiffness when I go to sleep, I do an Epsom salt soak. Heat the water as hot as you can stand it (without sustaining a burn). Add two cups of Epsom salts (there are some that are infused with lavender) and 1/2 cup baking soda. To enhance the experience, light a candle and/or play soothing music. Soak for 20 to 30 minutes.”
- Moises
"Since my hands are weak, I use a Waterpik, face scrubber, button hook, electric toothbrush and hair dryer holder to help me get dressed and out the door faster. My best tip is using a seat belt extender in my car so that I can buckle up with my right hand. These things are small but make life so much easier. Also, it's important to have a 'happy place' and parrots are mine!"
- Martha
Summer is traditionally a time filled with friends, good food and new adventures. Living with Parkinson’s disease (PD) can interfere with daily life, but it should not stop you from enjoying new things. This summer we want to inspire you to do things that make you feel “on.”
Here are five things people in our community have done to #SummerOn.
Create your own memory game!
After find out she had Parkinson’s, Laura learned more about her brain. She found that games help stimulate the brain and decided to put her drawing skills to use. Laura’s created a memory card game with 24 cards. Instead of the traditional matching games that only use images, her game matches a card with text and an image she created. “This way, the game engages both the limbic system and the part of the brain that processes language,” Laura said.
→ What type of exercise is best for people with PD? Read our exercise article to find out.
Travel On
Nancy did not let her love of travel stop when her husband’s Parkinson’s made it more difficult to do so. Nancy found ways to not let his PD prevent him from traveling. In her #KeyToPD Nancy shares some tips on how to make air travel easier. She encourages people living with PD to ask for a wheelchair at the airport even if they do not need it. This way there is no need to worry about getting to your gate in time, falling or finding things around the airport.
→ Don’t let your PD stop you from visiting your dream destination. Check out ourwebinar and article about traveling with PD and follow Nancy’s traveling tip and the other tips shared through our #SummerOn campaign.
Fundraise!
Summer is the perfect time to do new things with friends, but planning can be difficult. We have an idea for you. Plan a fundraiser in your community this summer and motivate others with PD. Creating a fundraiser is easier than you think. Fundraisers can be anything from throwing a party or barbeque, gathering a group and going for a bike ride or hosting a movie under the stars. You can even follow Elizabeth’s example and run a marathon with the proceeds going to the Parkinson’s Foundation.
Food provides nutrients that give us energy for activity, growth and all functions of the body. Proper nutrition is important when it comes to PD. In episode 4 of our podcast, Dr. Bas Bloom explains how nutrition can help improve some of the symptoms of Parkinson's and optimize the effects of medication. He also offers tips on getting adequate nutrition. Good thing there are tons of yummy healthy recipes on our YouTube channel.
Summer Podcast Playlist: Our Top 7 Podcast Episodes to Get you Through the Season
Whether you’re planning your next beach escape or gearing up for a road trip, the need for entertainment is key, and what better way to tune out than tuning into our podcast?
Featuring the latest treatments and techniques in the Parkinson’s disease (PD) field, our Substantial Matters: Life and Science of Parkinson’s podcast features the experts in the Parkinson’s community who cover a series of PD topics including employee dynamics, the benefits of exercise, alleviating voice challenges and more!
We’ve made it easy for you by picking out our top recommended podcast episodes for the summer― think of this as your curated PD podcast playlist. Just a click away, these episodes will transport you into the labs, offices and meeting spaces of PD health professionals who are eager to share more about your PD topic of interest.
The benefits of music therapy for Parkinson’s have been well established. Rhythm and rhythmic cuing can help with initiation, coordination and maintenance of movement. Benefits can extend to cognitive functions, communications abilities and mood. Some music therapists have furthered their education as academically trained professionals specifically in working with people with Parkinson’s.
Parenting has its challenges and surprises under the best of circumstances, but when a parent has Parkinson’s, it can put added stresses on the family. As parents’ abilities and roles change, children should understand the disease, how it may change their routines and the potential need to take on additional responsibilities.
Parkinson’s is more than a movement disorder. While movement symptoms may be a prominent outward symptom of PD, mood and other emotional changes are also common ― and not just for the person with PD. Care partners may also experience these changes. Often, the best way to recognize these problems and figure out coping strategies may involve other health professionals.
Many people with Parkinson’s want to continue to work. Sometimes all it takes is recognition of their condition by their employer and accommodations to compensate for disabilities. In fact, the Americans with Disabilities Act provides certain protections in the workplace for people with disabilities once they reveal their situation to their employers, who are then required to make reasonable accommodations to do the job.
Just as Parkinson’s affects movement, it can affect muscles of the face, mouth and throat, leading to problems with speech and swallowing. People with PD may experience voice problems during the course of their disease. The problems tend to increase as the disease progresses but may occur at any stage.
People with Parkinson’s need their medications on time, every time. Getting them too soon or too late can cause problems. So when a person with PD enters the hospital, which happens 50 percent more often than their peers, the staff often needs to be educated on the importance of delivering medications at the right dose and at the right times ― times that may differ from the usual times that medications are dispensed.
Given the differences women may encounter when dealing with their Parkinson’s, the Parkinson’s Foundation is leading the first national effort to address gender disparities in Parkinson’s research and care as part of an overall Women and PD Initiative. The Foundation has developed new patient-centered recommendations to improve the health of women living with PD.
A balanced diet is the foundation of good health for everyone. However, nutrition is even more important for people with Parkinson’s disease (PD). While there are many things about PD that cannot be changed, the informed choice of diet is one that can help people to live better with Parkinson’s.
The right food can optimize medications, ease symptoms, keep bones strong, fight constipation and weight loss and help maintain general health and fitness. A healthy diet can be delicious at the same time. Check out some of the fun and healthy recipes we made this summer for #FoodieFriday on our social media.
Blue Majik Pancakes
This recipe contains antioxidants, such as blueberries and spirulina, that may help defend your cells from damage. Almond flour is a great replacement for regular wheat flour since it is packed with nutrients, is low in carbs and may reduce “bad” cholesterol and insulin resistance. For a fun breakfast, try these healthy blue pancakes.
What makes the pancakes blue? Blue spirulina, sold at health food stores and sometimes the vitamin aisle, is derived from blue-green algae that is high in nutritional content and can help boost the immune system, increase energy and improve digestion.
Ingredients
1 cup of almond flour
¼ cup of water
2 eggs
1 tbsp of oil (or maple syrup)
1 tsp of blue spirulina
1 tbsp of chia seeds
Blueberries to taste
Preparation
Mix all ingredients in a blender
Add oil or butter to a pan
Pour desired amount of batter onto the pan
Add blueberries
Flip pancake
Cook until golden brown
Eat while it’s hot!
As a caregiver for a loved one with Parkinson’s disease (PD), your days may include medication alarms, driving to and from appointments and helping your loved one with activities of daily living. Simultaneously, you may be managing finances, cooking, working and trying to keep up with family and friends. It can be easy to forget that your needs require attention too. Self-care is defined as any practice that relieves stress and encourages a healthy mind and body.
We know you are busy, so we’ve compiled 15 realistic ways you can implement self-care…starting now:
Eat healthy with less hassle. The better you eat, the better you feel.
Manage stress. Determine what helps you relax most: a hot bath, a meditating app, reading a new book or going on a walk. Then devote time to it every day.
Exercise regularly. We know that exercise plays a role for your loved one’s PD, and consistent exercise can also help you. Just 30 minutes of daily exercise can help you sustain your energy and lead to better sleep.
Set limits and stick to them. This means asking for help when you need it. Try new resources. Bring in outside help (family or paid worker) so you can take a break. Call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636). No one can do everything for everyone all the time!
Reflect on the rewards of caregiving. Alongside trials and challenges, caregiving offers triumphs and joys. Take pride in how much you have learned and in discovering your own strengths.
See to your own health needs. Set up and attend your own medical appointments regularly. Your physical and mental well-being are key to successful caregiving.
Find activities you can enjoy with your loved one outside of care. Go to a movie, host a dinner party or sign up for something new. Enjoy time together.
Drink plenty of water. Staying hydrated helps flush out toxins, so bring a reusable bottle wherever you go.
Socialize with people who uplift you. Nothing can empower you like a feeling of camaraderie. Minimize exposure to negative people. Instead, go out with friends or get involved with a community organization, support group or charity that you believe in.
Laugh. Keeping a sense of humor helps beat anxiety. Watch a funny video or read something funny every day. Recognize and enjoy the happy moments with your loved one.
Schedule breaks from caregiving and make them a priority. Take time to pursue other aspects of your life or just to relax. Plan these breaks in advance and arrange for help while you’re out.
Cultivate a mindfulness practice. Try morning meditations or set a daily reminder to assess how you are coping. If you are stressed, plan your next break.
Life plan. Thinking about your future and what you want to achieve in life can help you maintain personal motivation. Can your loved one help you reach your goals?
Accept your feelings. Guilt, anger and depression are normal reactions to a progressive disease. Recognize the hidden grief component in these emotions and seek out someone who understands it. Knowing what to expect emotionally can help.
Practice being grateful. Recall or write down a few things from your day that made you or your loved one smile. Learn to savor the good times and the things that went right, however small.
Podcast Playlist: Our Top Podcast Episodes to Get you Through Fall
While the leaves may be changing, your favorite podcast isn’t going anywhere! Cozy up, sit back and get ready to learn from our Parkinson’s disease (PD) experts with our top Substantial Matters: Life and Science of Parkinson’spodcast episodes:
Stall the Fall
People with Parkinson’s are two times as likely to fall as other people their age. While healthcare professionals recognize the extent of the problem, there is still a lot to learn about why they happen and what can be done to prevent them.
Depression in Parkinson’s
With depression as a common PD symptom, people with Parkinson’s should be conscious of their increased susceptibility to seasonal depression. Learn about the symptoms that accompany depression and how they may overlap with PD itself.
Seeking a Second Opinion After a Parkinson’s Diagnosis
People are being newly diagnosed with Parkinson’s year-round. Learn more about seeking a second opinion from a movement disorders specialist. It may help to confirm the diagnosis and address any lingering unanswered questions.
Addressing Sleep Discomfort with Parkinson’s
The seasonal time change can lead to trouble sleeping for everyone, but people with PD experience sleep problems as a symptom. Changes in the brain can affect mood, thinking and the sleep-wake cycle. Find out how to address sleep discomfort.
Palliative Care as Supportive Care in PD
A change in temperature can bring muscle stiffness. As people with PD understand the benefits of palliative care, they are adding it to their regimen. Palliation means to ease the burden of the symptoms of a disease.
Dance Therapy for PD
A change of season can be the perfect time to try something new. Besides medication, people with Parkinson’s can benefit from many other forms of therapy, including physical, occupational, speech, music, art therapies, along with dance/movement therapy (DMT).
Regardless of where your loved one is on their Parkinson’s disease (PD) journey, you are the only one who can define “caregiving.” Especially following a new diagnosis, you might not feel like you are actually “giving” care. Similarly, your loved one might not see himself or herself as someone in need of care. But remember, care is not limited to physical tasks. Care can be emotional and spiritual as well as physical.
With resources created for care partners like our Caring and Coping educational book and Caregiver Summit videos, the Parkinson’s Foundation is here for caregivers. This November, for National Caregiving Month, we are asking our PD community to share their caregiving #KeyToPD. These care partners tell us their #Keys:
“I use a black container to put my husband's medications in when I get them ready for him to take. I used to use the clear or white plastic cups, but since most of his pills are white or light colored it was sometimes difficult for him to see them. Then I found some black sauce cups from an Italian restaurant and he can now see the pills much better.”
– Susan W.
“Being a caregiver is probably the most difficult job you’re ever going to have. The only way you can do it is to take care of yourself. You cannot say, ‘I don’t have time for me.’ The person you’re taking care of wants the best for you because you’re giving the best to them. Don’t be a martyr. It’s okay to take care of yourself.”
– Karen
“Planning. I am the live-in caregiver for my mom with PD. I set aside a few hours one day a month to set up her pills in four, seven-day containers. That way in case something comes up, at least we have her pills ready. Also, I set alarm timers in both our phones for her pill times. Such a big help!”
– Megan F.
“A ‘couch cane.’ This allowed my mother more independence for a while longer. She could get herself up from her couch using the couch cane. Her walker was right next to it, so once she arose, she could use the walker to move to the bathroom on her own.”
– Jean B.
"When you go to the support groups, when you go to the meetings, you meet other people with the same problems, the same difficulties. It’s a wonderful way to communicate, understand what you’re up against and get advice from other people. As you get together you start talking, you start confiding, and you find that you get people that are very willing to listen. That’s very important to me.”
– Carolyn
“We used to carry 2-ounce slices of cheese and 1.92-ounce single-size candy bars. Whenever my wife's dyskinesia got bad, she would eat one or two slices of cheese and the protein would counteract the excessive Sinemet causing the dyskinesia. Whenever her feet froze to the pavement, she would pop a chocolate bar and that would unfreeze her.”
– George A.
“Even as life changes, never stop striving to increase the qualities of your life together.”
– Judith
The Parkinson’s Foundation does not endorse products mentioned in this article.
Whether you care for someone who only requires help with basic tasks or for someone who requires daily physical care, utilizing the proper tools can help care partners provide the best support for their loved one with Parkinson’s disease (PD).
Think of caregiving as a home: when you move into a new house, you furnish it, make it a place you feel comfortable in and invite your friends and family over to celebrate. Moving into this new role as a care partner requires a similar level of rearranging. It will take time to get used to the new normal, but you will feel that comfort again. The first step is to learn what coping skills work for you.
Research shows that care partners face risks to their own emotional and physical health, which is why it is vital to prioritize coping tools to address the stress associated with caregiving. Examples of declined physical health in care partners include higher incidences of heart disease, high blood pressure, decreased immunity to sickness, anxiety and sleep deprivation.
By exploring ways that help you identify and relieve stressful tasks, you have the capability to create a better space for you and your loved one with Parkinson’s. As with building a safe, happy, and healthy home, it can help to establish the below coping tools early on:
“Seek out others who are walking this same journey; you are not alone and need to be able to share honestly and openly with someone who can really understand what you are experiencing.”
– Virginia DeWitt, care partner, Team Spark Support Group Leader, Grand Rapids, MI
“Keep active and be happy with what you are able to do rather than looking at what you can’t do.”
– Myra Hirschhorn, former care partner, Cherry Hill Parkinson’s Support Group Leader, Willingboro, NJ
“I would encourage someone to PLAN ahead but to LIVE in the moment. Each day is so unique, and each moment can be joyous or difficult. I would also remind each new care partner that ALL emotions are valid ― even the ones commonly viewed as negative. They are each allowed to feel exactly as they need to in the moment.”
– Celeste Harris, Houston Area Parkinson Society Caregiver Support Group Leader, Houston, TX
Identify stress triggers. A first step in coping with stress is identifying and acknowledging the causes. Identify the moments that cause tension as a care partner and determine how you can make that task or time of day easier.
Connect with other caregivers. No one will understand your experience as well as other care partners. Join a support group for care partners to learn other methods of caring and how to better cope with the role of caregiving. TIP: Register for our 2020 Care Partner Summit to hear experts discuss caregiving, coping mechanisms and connect with other caregivers.
Acknowledge your right to feel what you feel. It is okay if you feel grief, anger, anxiety, guilt or depression. Seek out someone you can talk to, whether a professional or a friend.
Seek out activities that bring you pleasure. Do the things you love. Read a book, see a movie or make time to enjoy your coffee each morning. No matter how big or small, it’s important to find joy in your daily life.
Build in regular breaks. Treat scheduled breaks as appointments. You cannot be a good caregiver to someone else if you do not take care of yourself.
Delegate. No one expects you to do it all. Determine what your limits are and ask others to help where you need it. Most people are more than willing to help, especially when given specific tasks.
Seek out joy in your relationship with the person with Parkinson’s. Your hands-on duties, such as bathing and dressing your loved one, might feel like work, but these tasks bring you together. Add some fun to your hands-on care: sing songs, tell jokes, share goals and dreams.
Develop a habit of participating in activities together outside of care tasks. Shared time as husband-wife, mother-daughter, siblings or other relationship — rather than as caregiver and care recipient — allows you to enjoy each other and build happy memories.
Podcast Playlist: 7 Podcast Episodes to Get You Through Winter
With cold temperatures and short days, winter may also coincide with feelings of isolation or loneliness. Know that you are not alone. The winter blues are common and can be triggered by the smallest occurrences. Whether you’re feeling down or simply need an escape, tune into our Substantial Matters: Life and Science of Parkinson’s podcast episodes and tackle the seasonal lows with some of our most popular podcast episodes featuring Parkinson’s disease (PD) experts.
Mental health issues are often a part of a chronic disease such as Parkinson’s, but no one comes into a disease as a blank slate. Therefore, distress in the setting of a disease should not only be ascribed to having the disease but should also take the whole person into account.
In addition to tremor or stiffness, people with PD are often troubled by common non-motor symptoms such as fatigue, pain, disturbed mood or cognition. Visits to PD specialized therapists, exercise, dance and other movement regimes can help alleviate these problems.
While the traditional medicine from a Western perspective typically include drugs, rehabilitation therapies or surgical operations, many Eastern cultures take a holistic approach to treatment through the use of herbs, acupuncture, dietary therapy and other techniques aimed at restoring a healthy balance.
A comprehensive, team approach can help people with PD improve quality of life issues that may not come up during routine doctor visits due to the associated stigma or potential feelings of embarrassment. These issues can include sexual/intimacy matters, blood pressure drops or urinary symptoms and often have easy solutions when addressed.
Receiving a Parkinson’s disease diagnosis, especially at an early age, can be seen as disrupting an entire life plan. But it doesn’t have to. This episode offers advice about how to talk to children about the disease, where to turn for resources, and how having a relative with a chronic disease can have positive aspects for a child.
Regular exercise is essential for people with Parkinson’s and has been shown to improve many PD symptoms including balance, mobility, issues with depression and constipation. Additionally, research shows that exercise may have a protective effect on the brain, slowing the degeneration of brain cells.
Addressing cognitive, behavioral, emotional and other neuropsychiatric issues may be challenging for physicians and for those they treat. This episode highlights an integrated cognitive behavioral movement disorder program addressing these challenges.
