Care can mean many things to many people.

In the same way no two people living with Parkinson’s disease (PD) experience the same symptoms, reactions to treatment or progression, the caregiver journey is equally as unique. This November, as part of National Caregivers Month, we asked caregivers and people in the PD community to tell us what "care is" to them. Your responses inspired and motivated us to continue making lives better for people with Parkinson’s.  

 

For stories of encouragement, read our library of My PD Stories, written by and for people affected by Parkinson’s. Feeling inspired? Submit your PD Story today. It may just help someone keep going!

 

Many caregivers have told us that finding the right support group has changed their life. Find a support group that fits your needs and personality by calling our toll-free Helpline at 1-800-4PD-INFO (473-4636). Support groups are a welcoming space to vent, exchange coping methods and tips among others who understand. Haven’t found the right one? Consider starting your own!

Whether you find restoration in exercise, meditation, spirituality or professional help it is important that caregivers address their own emotional well-being. Caregiver stress and burn-out are a reality for many caregivers. It’s important to find ways to balance life and caregiving. 

 

People with Parkinson’s may experience changes in mood or act on impulsive thoughts, but it’s important to remember that PD can cause movement and non-movement symptoms. Consider trying our Caring and Coping workbook to help you navigate all the stages of Parkinson’s as a caregiver.

Through your answers, we learned that providing care can be: emotional, physical, all-consuming and rewarding. You don’t just know what Care is, but many of you live it every day. No matter how you define care, we are inspired by the answers you posted on Facebook, Instagram and Twitter:  

 Care is when you give unconditionally to someone who needs it.
- Nina K.

Care is giving whatever you can to care for the needs of whoever needs you physically, emotionally and spiritually.
- Fred & Joyce D.

Care is participating, communicating and supporting, in any and every way possible, so that those you care about never doubt it or feel like they are too much or too difficult.
- Molly S.

Care is having family and friends there when you need them.
- Jannie M.

Care is a finger print you leave on someone’s heart.
- Miriam P.

Care is having concern for others, helping others and making their lives easier.
-Judie C.

Care is soul love and spirit.
-Stephanie M.

Care is awareness.
-Valerie S.

Care is taking over the responsibilities that others can no longer fulfill.
-April B.

Care is truly feeling for the condition of an individual.
-Florence S.

Care is letting go of the past so that you can be present and seeing the person behind the illness.
-Anne E.

Care is not sweating the small stuff so that you can tackle the big stuff.
- Chaitanya P.

Care is compassion.
-Elizabeth E.

Care is having mutual respect, and compassion for your caregiver as well as expecting that from your caregiver as well.
- Debbi W.

Care is having compassion, being attentive, respectful and reassuring and emotionally on your game.
-Diane C.

Care is to walk side by side, celebrating the small achievements and holding them on the challenges that come their way.
- Mia S.

Care is synonymous with patience.
- John A.

Care is being there, through the good and the bad. Care is listening without judgment.
- David P.

Care is sacrifice.
- James S.

Care is doing the small things for someone in need; realizing baby steps with someone to help them get to an independent situation; always being there; patience, resolve, rising up, conquering!
-Maxine N.

Thank you for caring and remember that we are here to care for you.

Caregivers and people with Parkinson’s are always invited to call our Helpline 4PD-INFO (1-800-473-4636) for the latest PD information, emotional support, referrals to health professionals, local resources and more.

Movement disorders specialist Hiral Shah, MD, assistant professor of neurology at Columbia University Medical Center, is driven to improve access to quality care for people who live with mental health conditions and neurodegenerative disorders like Parkinson’s disease (PD).

Dr. Shah’s impressive career includes pursuing global public-health focused research. She has worked at the World Health Organization (WHO) on public health aspects of neurological illnesses and completed training as a Columbia Global Mental Health Scholar and Global Health and Aging Policy Fellow. With this experience, Dr. Shah always examines best practices surrounding human rights protection for those with cognitive impairment and dementia. WHO is also in the process of publishing a set of action steps to address the global disparities in Parkinson disease care.

Dr. Shah also treats people with PD in clinic at Columbia University Medical Center’s Multispecialty Neurology Division, a Parkinson’s Foundation Center of Excellence.

“I want to be a source of information and comfort to individuals and families who are dealing with PD,” said Dr. Shah. “Seeing the way that Parkinson’s can impact one's cognitive, psychological and motor functioning can be really devastating but it also drives me as a physician to take an active role in providing holistic care.”

At the outset of her career, Dr. Shah completed specialized movement disorders training at Columbia, funded through the Parkinson’s Foundation Movement Disorders Fellowship Program. This program, which supports medical institutions in providing fellows with a two-year, mentored training, has helped 150 neurologists become certified movement disorders specialists.

The Foundation has invested more than $15 million in this fellowship program since the distribution of the first award in 1980, understanding that specialized care is key to better PD outcomes. “My fellowship training was instrumental in my professional development,” said Dr. Shah. “Without the fellowship, I wouldn't be where I am today.”

“Mental health screening should become routine practice in Parkinson’s care.”
-Hiral G. Shah, MD

During her training, Dr. Shah observed that a lot of people with Parkinson’s had mental health issues that were not addressed or recognized. “Individuals and families felt stigma or hesitation about discussing mental health, but also providers often lacked the sensitivity to be able to recognize these issues. The interplay of non-motor mental health conditions on neurological symptoms (motor symptoms), cannot be overstated.”

In Dr. Shah’s medical experience, unrecognized mental health issues often overshadow movement symptoms in terms of quality-of-life impact. The Parkinson’s Outcomes Project, the largest-ever clinical study of Parkinson’s disease, found that non-movement symptoms like apathy and depression are more intrusive and debilitating than movement symptoms for people living with PD. “Mental health screening should become routine practice in Parkinson’s care,” Dr. Shah said.

For Dr. Shah, developing a relationship with her patients is key to understanding how to help them with the nuances of their non-movement symptoms. “It takes time to get to know a person, to really understand their level of health literacy and what allows them to formulate their healthcare beliefs.”

Dr. Shah recalls a patient who, only with time, disclosed a history of substance abuse and dependence. “Medication changes really triggered his memory of those dependency issues, and there was a resistance to medication. Once I learned that, I could better work with him.”

Public health has always been of interest to Dr. Shah, which she credits to her upbringing. “My family is from India and would take me on yearly trips there when I was growing up,” she said. "My father is a physician, so I was routinely exposed to the health care system in India through his friends and colleagues. As a developing nation with limited healthcare resources, the impacts of poverty on care there are very clear.”

Increasing access to healthcare and representation among priority populations in Parkinson’s care is paramount to Dr. Shah. “I think in the western world, a lot of the literature indicated that Parkinson’s was a disorder of the white person. What we are now recognizing is that it affects all ethnicities and races,” said Dr. Shah. “Given that it is the fastest growing neurological disorder globally, we know that this means we need to be ready for the potential impacts in the future.”

In developing educational materials for the PD community, Dr. Shah found that Black people with PD she spoke to in her research felt extremely isolated. “They told me that they have never been in the room with someone else who is Black and has Parkinson's,” she said.

This realization led to her latest project: publishing a book about the Black and African American experience with PD. The book, which is a collection of firsthand accounts from Black people impacted by PD, is due out this summer. “My hope is that people might find a piece of themselves in the stories, something that they can relate to, which helps them to see that they're not alone.”

Dr. Shah credits the Parkinson’s Foundation with being a source of high-quality information for her patients as well as a source of professional connection for her. “The Foundation has always been really enthusiastic and encouraging of my work,” said Dr. Shah. “When people with mutual interests and common concerns come together, it really helps advance the cause. As one of my mentors likes to say, ‘You can go alone or work together. It may take longer to work together, but you'll probably go further.’”

Find a movement disorders specialist in your area at Parkinson.org/Search or call the Parkinson's Foundation Helpline at 1.800.4PD.INFO (1-800-473-4636).

Maintaining cognitive brain health is a high priority for both people with Parkinson’s disease (PD) and family members. Though many living with Parkinson’s will not develop dementia, mild cognitive issues may emerge in 20 to 50 percent. As a result of this survey, a working group of experts led by Jennifer Goldman, MD, MS, at Rush University, a Parkinson’s Foundation Center of Excellence, was assembled to address this issue. In this month’s What’s Hot in PD? column, we share practical results from the working group that may be useful for both people with PD and their families.

There are potential pharmacological and non-pharmacological interventions that may be useful in addressing cognition (thinking and memory) in PD. The working group divided the recommendations for maintaining PD cognitive health into early and more advanced Parkinson’s.

Early Parkinson’s Disease

• Exercise according to guidelines from American College of Sports Medicine and American Heart Association 
• Stay active socially; for example, spend time with friends or join a support group.
• Engage in cognitive training exercises.
• Learn coping strategies; for example, work with an occupational therapist or neuropsychologist on techniques for paying attention, remembering things or doing everyday tasks.
• Nutrition can affect cognition. Consider trying the Mediterranean diet.
• Take your time when doing tasks.
• Let your family and friends know if you are having trouble.

Seek help if feeling depressed or anxious 

Advanced Parkinson’s Disease

Follow the above recommendations, in addition to: 

• Develop and follow a highly structured daily routine 
• Consider the use of medication for cognitive impairment; common medications include cholinesterase inhibitors and memantine
• Have an advanced directive in place (living will, treatments) 
• For care partners: take care of your own health as well (see doctors as needed) 

For care partners: seek out support such as counseling 

Though more pharmacological treatments are needed, we advise people not to underestimate the value of implementing many of these techniques and considerations. You can have a happy life with PD but you need a winning strategy for brain health and cognition — and that strategy may not always include a pill.

Palliative care is a holistic, team-based approach to managing chronic health conditions, such as Parkinson’s disease (PD). Palliative care specialists champion quality of life and can be central to navigating the challenges of PD from initial diagnosis, onward. Most insurance plans cover all or part of palliative care treatment costs.

The following article is based on a Parkinson’s Foundation Expert Briefings webinar exploring the role of palliative care in Advanced PD, hosted by Janis M. Miyasaki, MD, MEd, FRCPC, FAAN, Director of the Parkinson and Movement Disorders Program at University of Alberta. Regarded as the founder of PD palliative care, Dr. Miyasaki leads a movement disorders group comprising several neurologists, a neurosurgeon, neuropsychiatrist and geriatrician, and a dedicated interdisciplinary team.

What is Palliative Care?

It’s important to distinguish that palliative care is not hospice or end-of-life care. Palliative care practitioners help patients focus on living well now by actively treating all aspects of a disease.

Palliative care:

• Improves life
• Provides pain and symptom relief
• Integrates psychological and spiritual aspects of patient care
• Supports patients and families; when caregivers do well, so do people with PD
• Addresses needs through multiple disciplines
• Begins early in the course of illness
• Affirms life and regards dying as a normal process
• Neither hastens or postpones death

The best palliative care emphasizes well-being. It also acknowledges difficult feelings, such as anger and despair, that can come with a Parkinson’s diagnosis. Addressing these emotions can help people with PD cope with the often-challenging job of managing day-to-day physical symptoms.

The Care Team Role

A person’s Parkinson’s disease journey often begins in a doctor or neurologist’s office. But addressing Parkinson’s changing needs, whether physical, emotional, social or spiritual, takes a team. Specialists can include doctors, nurses, social workers, chaplains, pharmacists, nutritionists and counselors.

People with PD can also struggle with existential distress. Different from depression, these hopeless feelings stem from trying to make sense of overwhelming events, such as a Parkinson’s disease diagnosis. It’s important to address these emotions. A psychologist or an experienced spiritual care practitioner can help.

Managing Pain

As Parkinson’s advances, coping with pain can pose another challenge. Always consult your physician for pain management advice. One of the first lines of PD pain treatment is levodopa, a dopamine agonist. It treats motor symptoms, including rigidity and dystonia (sustained or repetitive muscle twisting, spasms or cramps), associated with PD pain. Range-of-motion exercises, alone or with assistance, also offer relief. A doctor or experienced licensed physical therapist can recommend appropriate exercises.

If levodopa and exercise aren’t adequately addressing pain, talk to your doctor about injectable botulinum toxin A (BOTOX) treatment. It can alleviate dystonia by targeting and weakening overactive muscles.

When all else fails, ask your physician about prescription pain medication. Due to drowsiness, confusion and other side effects, pain medication is often considered last.

Reducing Side Effects       

It’s important to take any medications as prescribed. Skipping doses or waiting until the pain is unbearable can require larger doses of medication to treat symptoms, resulting in increased side effects.

Constipation, another unpleasant pain medication side effect, can lead to more problems, including stomach and back pain, difficulty absorbing medication and hemorrhoids.

Diet can help curtail constipation. It is important to:

• Drink 64 ounces of water each day
• Eat a well-balanced, high-fiber diet including fruit, vegetables and whole grains
• Include dried fruit such as figs, dates
• Consume more beans and less meat
• Avoid white bread, rice or pasta    

Consult your doctor about constipation treatment, which can include daily exercise, abdominal massage and/or over-the-counter and prescription therapies. Read the Parkinson’s Foundation publication Constipation and Other Gastrointestinal Problems in PD for constipation solutions to discuss with your doctor.

Planning Advance Care

Palliative care includes planning for the future; a step that requires careful, thoughtful decisions. Because forms can be complicated and confusing, it is important to start the planning process early.

Aging With Dignity’s Five Wishes document can help express:

1. Who makes future care decisions
2. Desired medical care
3. Comfort level
4. Preferred treatment
5. Information to share with loved ones

Conclusion

Palliative care fosters comprehensive Parkinson’s disease management. Initial pain management approaches include non-medication therapies and range-of-motion exercises to alleviate PD symptoms. Medication used as prescribed can also minimize pain. Identifying values and consulting a psychologist or spiritual care advisor can lessen existential distress. And advance care plans can guide future healthcare in accordance with your wishes.

Have questions about Parkinson’s disease or anything you read here? Call our Helpline at 1-800-4PD-INFO (473-4636) or email us at Helpline@Parkinson.org.

Do you ever walk into a room and forget why? Next time, try closing your eyes to jog your memory.

Your brain is a mysterious organ that researchers are still trying to better understand. Brain Awareness Week is a global campaign that raises public awareness about the progress and benefits of brain research, including research into the causes of Parkinson's disease (PD) and how to treat it. This year we wanted to provide you with 12 ways you can enhance your cognitive function, starting right now:

1. Keep Learning

Choose activities that keep your brain working. Set out to complete a complex goal or learn something new. Start with watching a new video on our YouTube channel.

2. Eat a Healthy Diet

Following the Mediterranean Diet can help people with Parkinson's slow levadopa absorption into the brain. This diet not only helps the brain, but can reduce blood pressure and cardiovacular disease.

3. Take a Book with You

Reading is a complex task that requires multiple parts of the brain to work together. A complex book can improve memory and cause positive neurological changes that last even after you stopped reading.

4. Stay Social

Staying social has been proven to help retain cognitive sharpness. Surround yourself with people who make you laugh and smile, or make new friends at Parkinson’s support groups. Get to know us on Facebook, Twitter and Instagram.

5. Keep Calm

Stress of any kind can temporarily worsen PD symptoms. Meditating just 15 minutes a day can bring a sense of calm and the ability to see things more clearly.

6. Get Enough Sleep

Maintain a regular sleep schedule; get up and go to bed the same time every day. Not sure where to start? Try Sleep: A Mind Guide to Parkinson's Disease.

7. Keep Track of Medications

Establishing a daily routine helps keep you on track with medications and exercise regiments. It can also help with sleep and digestion issues. Watch this guided meditation video to get started now.

8. Increase Your Heart Rate

Intense exercise can improve efficiency of your brain cells using dopamine and lessen PD symptoms.

9. Give Your Brain a Workout

Creativity in everyday life provides excellent mental stimulation. Vary your activity to keep the mind strong and healthy. Draw, paint or write your My PD Story.

10. Groove to the Music

Listening to music can improve memory. Singing and dancing to a song helps cognitive and physical functions. Research shows that exercise, social stimulation and singing can help postpone PD symptoms.

11. Drink Caffeine

Several studies have shown that caffeine may reduce the risk of developing Parkinson’s. A cup a day may also help with motor symptoms, boosting memory and lowering the risk of depression.

12. Laugh Out Loud

Laughing stimulates different areas in the brain. Some studies show laughing can also improve short-term memory. Watching a funny movie or cat video is also a natural stress reducer.

Want more? Follow us on Facebook and Twitter for the latest in Parkinson's news.

The first concern for most people following a Parkinson’s disease (PD) diagnosis is to get the right medical help. Next, many people begin planning for living their life with Parkinson’s ensuring that their legal, financial and insurance concerns are all in good shape.

While earning ability or other sources of cash flow may change, with planning and a better understanding of the rights and benefits you may newly qualify for, the Parkinson’s Foundation wants to make sure that our PD community feels empowered to utilize the systems in place.

1. Create a foundation for planning legal, financial and medical planning.
    
2. Create a long-range plan for health insurance.  Identify strategies for: protecting yourself against the risks of major medical bills, long-term disabilities and long-term care expenses.
    
3. If you or a loved one are a veteran living with Parkinson’s, learn about veterans benefits.
    
4. Estate planning is not only about a will. It’s about planning for life. Proper estate planning will protect you for many years. If you have religious beliefs that might affect medical decisions, be sure to address them in your documents. 
    
5. Medicare can be complicated to figure out on your own. There are many plans and features and it is difficult to compare them all. Fortunately, there are several resources that can help.
    
6. Parkinson’s may change your income and expenses. Whatever financial and investment plans you made prior to your diagnosis should be revisited. Develop a workable financial plan early, then revisit and revise it annually. 
    
7. Micrographia (smaller handwriting) is a common PD symptom. Have a lawyer prepare formal notarized affidavits that you sign throughout the day to document signature changes. This can help prove that your signature is real, even if it differs from other signatures on file.

Learn more in our Legal, Financial & Insurance section. 

This Parkinson’s Awareness Month, we want to hear your #KeyToPD.

Here are the Foundation’s top five keys to living a better life with Parkinson’s:

• ​Find a neurologist. Regular neurologist care can save the lives of thousands of people each year. Neurologist care saves about 4,600 lives each year in the U.S. alone.
• ​Get Answers. Call our 1-800-4PD-INFO (473-4636) Helpline or visit Parkinson.org to get your Parkinson's questions answered — at any stage of PD.
• Put together a care team. People living with PD who seek expert care have better outcomes — complication risks are lower, they enjoy better quality and longer lives.
• Establish an exercise routine. Increasing physical activity to at least 2.5 hours a week can slow decline in quality of life for people with PD.
• Get moving and socialize. Meet others with PD and families living in your area at your nearest Moving Day, A Walk for Parkinson's. Register at MovingDayWalk.org.

Enjoyable activities are essential to replenish mind, body and spirit. It is is important for people with Parkinson's disease (PD) and care partners to stay active through physical, mental and social stimulation and to engage in activities that promote relaxation.

Important Considerations for Leisure Activities:

• Set aside time in your calendar for leisure activities in your week to make sure they happen.
• Consider trying new activities and/or exercise classes. Call our free Helpline at 1-800-4PD-INFO (473-4636) to find a PD-specific class near you.  
• Schedule the time of your leisure activity to coordinate with your “on” time. Remember to take your medications with you to ensure dosage schedules stay on time.
• Stretch before engaging in any physical activity to prevent muscle strain.
• Join a group or take a class to explore new hobbies and/or connect with others with similar interests. 
• Balance activity and rest to reduce fatigue. A variety of interests may provide opportunities for both active and more sedentary leisure pursuits.
• Try simple adaptations to your leisure interests. Build up golf club grips for a better swing; install a handrail on the dock to make getting in and out of the boat easier; experiment with a recumbent bicycle; or build raised beds in your garden.
• Be aware that Parkinson's can make movements slower, smaller or affect balance reflexes. Use common sense and "test the waters" before beginning activities.
• Invite others to join you in your leisure activities.
• Get creative. Try writing, painting, photography, ceramics, knitting or other creative possibilities. Creative expression is an important component to quality of life.

Involving your team

An occupational, physical or recreational therapist can provide assessment and recommendations for current leisure pursuits, make suggestions for exploring new options or provide assistance in making adaptations if needed.

For more information about managing Parkinson's, PD resources, financial matters and personal stories visit Living with Parkinson's. 

Just as exercise keeps your body strong, mental activity keeps the mind sharp and agile. Challenging the brain and continuous learning not only keeps the mind healthy, but they also impact our entire physical well-being. New dendrites (the connections between nerve ells that allow cells to communicate with each other) are produced throughout your entire life. These new connections help you store and retrieve information more easily.

At any age the brain continues to absorb information, make new connections, acquire new skills and enhance memory. Mental decline is NOT a part of normal aging and there are ways you can train your brain. 

Tips for maintaining a healthy mind:

• Stay physically active to reduce the risk of Alzheimer's stroke and osteoporosis.
• Exercise every day for 30 minutes to improve blood flow to the brain.
• Seek positive social interaction by staying involved with friends and family. Social interaction is key to keeping the mind sharp.
• Get Involved. It gets you out of the house and involved with others.
• Reduce stress. Normal aging can make the mind less efficient, but don't stress about it.
• Exercise and challenge your mind daily with puzzles games and mental exercises.
• Practice good nutrition and a balanced diet with fruits, vegetables, breads and cereals which contain folic acid, Vitamin B12 and thiamine to keep the memory healthy.
• Drink water. Water is an essential part of humans and needed for good memory. Lack of water leads to dehydration. Choose water over soda as it can lead to dehydration and fatigue.
• Try to have a a positive attitude, which leads to more focus, increased memory and alertness.
• Vary your activity to keep the mind strong and healthy. Creativity in everyday life provides excellent mental stimulation.

To learn more about cognition and memory, download our free educational book "Cognition: A Mind Guide to Parkinson’s Disease."

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.

1. 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.

→ Get inspired by Laura and create your own game.

2. Take a hike!

Four years after her Parkinson’s diagnosis, Beth took a grand hiking challenge by hiking the Grand Canyon during Parkinson’s Awareness Month. She wanted to raise awareness for Young-Onset Parkinson's disease (YOPD) and the huge toll it takes on families. Plan a hike this summer to raise awareness or just simply head to the mountains or nearby park to enjoy nature. Either way, share your pictures with us ― and remember to use our hashtag #SummerOn.

→ What type of exercise is best for people with PD? Read our exercise article to find out.

3. 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 our webinar and article about traveling with PD and follow Nancy’s traveling tip and the other tips shared through our #SummerOn campaign.

4. 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.

→ Learn more at Parkinson.org/Champions.

5. #FoodieFriday

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.

→ Join our #FoodieFriday this summer by cooking and sharing some of your favorite healthy meals.

Follow us on our social media to find more ways to #SummerOn before summer sails away.