Tips for Daily Living

Dr. Michael Okun Shares Top Tips from Living with Parkinson’s Disease: A Complete Guide for Patients and Caregivers!

Group of women balancing on bar at ballet class

Recently, worldwide Parkinson’s expert Michael Okun, MD, shared top tips from his book Living with Parkinson’s Disease: A Complete Guide for Patients and Caregivers, which is available now. 

There is so much that we can do to help people with Parkinson’s disease (PD) have great lives. Here are just some of the tips that Dr. Okun covered in his Parkinson’s Foundation Facebook Live event, Living with Parkinson's New Book Release, on August 4. 

Dance, Dance, Dance!

Exercise is like a drug and we know that it can help with rehabilitation for people with Parkinson’s greatly. We are seeing tangible benefits from exercise. There is a part of the brain that can, in certain circumstances, overcome deficits and exercise can be used as a treatment. Dance is a great option, so is Tai Chi. There are a lot of pearls in the exercise chapter of the book.

Nutrition – Can the Ketogenic Diet be helpful?

There’s not enough research to determine whether ketosis (a low carbohydrate diet that causes the body to break down fat and create an acid called ketones that fuels your body and brain) is beneficial for Parkinson’s. Is the Ketogenic (also known as Keto) diet helpful? Maybe. 

The biggest advice: be careful and follow the advice of your medical team first and foremost with nutrition. The only way we will find out if there is something to this theory is with proper studies and control groups. There are some exciting, emerging studies in nutrition and diets for Parkinson’s on the way.

The Importance of Sleep

If you don’t have a good night’s sleep, it’s all but guaranteed that you will not have a good day the next day. Many people don’t know that they are not sleeping well until they get a sleep study. This is something that we need to work on in treating Parkinson’s ― focusing on the importance of sleep as sleep problems are very common with Parkinson’s. 

If you find you are falling asleep frequently during the day, you likely have a sleep problem. There are options ― whether it’s decreasing your dosage of dopamine or looking into adding other prescriptions. Talk to your doctor about your prescription and looking into getting a sleep study ― a sleep study can really change your life! One of the chapters in Living with Parkinson’s Disease focuses on the treatment of neuropsychiatric effects and we discuss sleep specifically.

Depression and Parkinson’s

Depression is the largest unmet hurdle in Parkinson’s. What we realized in writing Living with Parkinson’s Disease was demoralization was also a huge unmet need, which can occur in one in five patients. It’s not just that you are depressed or have anxiety or even experience hallucinations, it’s that you are demoralized. There are therapies that can help greatly with demoralization. Treatment is so important ― you can have a better life! We are too stuck on the name of the depression pill and we should refocus on how we administer the treatment.

Parkinson’s and Hallucinations

Most hallucination medications block dopamine. Blocking dopamine with Parkinson’s will make symptoms worse. There are some medicines for other issues ― like for gut issues and headaches that also block dopamine and we need to be on the lookout for that. 

When we think about hallucinations, we must look for drugs that will not block dopamine ― there are drugs that do this! Before we get to medications, there needs to be a thorough physical examination to ensure other issues are treated first. Check out Chapter 8 in Living with Parkinson’s and talk to your doctor for more information. Dr. Okun also offers more advice on the Facebook Live event.

One of the last tips from the Facebook Live event comes from a viewer and is a really important message: “If you are not a fighter, learn to be one. How well you live with Parkinson’s is up to you.”

Dr. Michael S. Okun

For more tips from Dr. Okun, check out the book, Living with Parkinson’s Disease: A Complete Guide for Patients and Caregivers

About the author: Michael Okun, MD, is considered a world's authority on Parkinson's disease treatment and research. He is currently Executive Director of the Fixel Institute for Neurological Diseases, Chair of Neurology at the University of Florida, a Parkinson’s Foundation Center of Excellence and the National Medical Director for the Parkinson's Foundation.

My PD Story

Two men accepting award
General PD Community

Parkinson's Boxing Program

University of Texas Southwestern Medical Center’s Parkinson's Boxing Program in Dallas, TX

When Dr. Sam T’s doctor told him about the Parkinson’s Boxing Program, he readily agreed without knowing what to expect. “I had been working with a trainer for a few weeks and was happy to have another outlet for exercise” Dr. T said. “My first thought was this would be strictly an exercise class, but it turned out to be much more.”

The 12-week community boxing class is designed for people living with PD and their families. Thanks to the Parkinson’s Foundation community grant and the donation of space at the Preston Hollow United Methodist Church, we are able to provide this class at no cost to the participants. There are two classes per week consisting of high intensity boxing activities: heavy bag work (allowing for punching sequences), cone drills, and strengthening exercises focused on the lower extremities and core.  

The class utilizes students from The University of Texas Southwestern Medical Center Department of Physical Therapy to help coach, guard and encourage the fighters. This program is beneficial for the boxers as it is a high intensity exercise built on community, which is good for the body and the mind. In addition, we expose and train physical therapy students to grow into excellent clinicians who are better prepared to serve those living with PD. “I want to thank the student volunteers who came to encourage and help us. They were enthusiastic and made the time fly by,” Dr. T said.

The Parkinson’s Foundation community grant supports the Dallas PD community. Although the changes in strength balance, and mobility have been exciting, the feedback of the participants on what they gain from the community atmosphere has been so encouraging! “The other people in the class became friends. We were able to discuss our symptoms and problems in ways only someone with PD understands. Those friendships became as important to me as the exercise itself. I benefited a lot from the program and recommend it for others who have PD, ” Dr. T said.

The outcomes have been remarkable as expected, as we track the fighter’s progress before and after the program. We have seen substantial improvements in functional strength (floor to standing transfer), dual task parameters (walking while counting), self-selected walking velocity, backwards walking, and dynamic balance.

We plan to continue to raise money through grants and donations to continue to run this program in the Dallas area! We feel as though it is beneficial for the fighters and the student coaches.

My PD Story

Group of people exercising at class
General PD Community

Newly Diagnosed Wellness Initiative

Tampa JCC and Federation’s Tampa Bay Parkinson's Disease Newly Diagnosed Wellness Initiative in Tampa, FL

The Tampa Bay Parkinson’s Disease Newly Diagnosed Wellness Initiative is a collaboration between the Tampa JCCs and University of South Florida, a Parkinson’s Foundation Center of Excellence, to improve the lives of people impacted by Parkinson’s. The program helps those newly diagnosed with Parkinson’s participate in this established comprehensive Parkinson’s wellness program. With more than 250 participants, the program provides an inclusive and welcoming environment for Parkinson’s patients and their families.

It provides a multi-faceted approach to help those with PD focus on hope and possibility with dignity. Activities include weekly exercise classes; bi-weekly support groups for people with PD, the newly diagnosed, caregivers and frequent educational programs where Parkinson’s Foundation resources are shared and distributed. In addition, there are social programs planned by program participants, which encourage individuals, family and friends to feel active, connected and empowered in a strong, welcoming and Parkinson’s-education community.

“I was diagnosed with PD after my children expressed their concerns with my difficulty moving, my facial expressions and my speech. They attended my appointments with my primary doctor and neurologist. I was living in south Pinellas County with little access to programs in support of PD. We heard about the programs offered by the JCC in Tampa so I moved to Tampa to be able to participate in these programs. After four months of active participation I get many positive comments from family and friends about the significant improvements in my physical appearance, movements and speech. I currently see a personal trainer twice weekly and participate in boxing. I also do chair yoga and Nia once a week. I attend Tremble Cleft which has significantly improved my speech. And the boxing has improved my stability and mobility. In addition, I participate in the PD Support group which has helped me mentally and emotionally. I currently attend these programs at both the JCC on the Cohn Campus & the Bryan Glazer Family JCC facilitates. I am very appreciative for the improvements to my lifestyle as a result of all of these programs.”
- Richard Montalbano, newly diagnosed, new participant 

“The program has proven to be extremely valuable in my overall battle daily with Parkinson’s. My mental outlook has improved as a result of this class. I feel more confident in my daily functions requiring balance and strength Moves we are required to do during class support post rehab exercises I do daily to maintain my quality of life. Bottom line is the program is an integral part of a daily ritual of movement to maintain both mental and physical well-being.”
- John Mollner, newly diagnosed, new participant 

“I feel very blessed to have access to this Program and the wonderful staff that administer and run it. I regularly attend three to four classes a week. I find that Tai Chi, Rock Steady Boxing, and Tremble Clefs have quite a bit of complimentary activities and approaches that help to strengthen the benefits that I get from each class that I attend. During my last appointment my doctor was so impressed with my breathing that he said it was the best breath that I had ever taken with him. He said, ‘keep doing what I have been doing with the program.’ I have seen a big improvement in my ability to manage my disease and function better since starting the program.”
- Wayne MacLaughlin, newly diagnosed, new participant 

“I want to thank the JCC for welcoming us.  I take three classes and I feel that each class gives its own benefits.  The benefits in coordination, motion and balance play a great part in keeping my mobility on a positive level.”
- Ted Mook, newly diagnosed, participant of 3 years

“This is a valuable resource for people with Parkinson. I have greatly benefited from the Tai Chi class and now the new Tremble Clef program has helped me strengthen my vocal cords through singing. I was diagnosed six years ago. I have been coming from 25 miles away to participate. 
- Robert Packard, participant of two years

Find a local Parkinson’s wellness class in your area. See the full list of Parkinson’s Foundation Community Grant Recipients.

My PD Story

Chuck and Alice exercising
General PD Community

Poised for Parkinson's

The Poise Project’s Poised for Parkinson's in Candler, NC

Chuck and Alice sitting together

We are looking forward to building on the success of "Poised for Parkinson's" in the Southeast with renewed support from this 2019 Parkinson's Foundation Community Grant. This is an Alexander technique (AT) based course for people living with Parkinson's and their partners to learn how to bring these practical skills into their daily lives. 

“We hope that everyone living with Parkinson's and everyone who is living with them gets this course at some point. It would be wonderful if people could have it at diagnosis,” said Monika Gross, Executive Director.

We have Alexander teachers here in North Carolina, as well as around the country and world, who are eager to be trained to deliver this new replicable program to their local communities. This summer besides the granted trainings in North Carolina, we will also be training teachers in this course in California, and in the fall, in Chicago and in Hungary and Switzerland. 

“We are excited to keep growing and developing the footprint for this course, and to be able to offer people living with Parkinson's and the care partners who love them these powerful Alexander technique-based skills as a way to enhance their own self-care, agency, and integrity in the face of the daily challenge of living with Parkinson's."
– Monika Gross, Parkinson’s Foundation Community Grant Recipient

Meet Chuck & Alice, Chapel Hill NC "Poised for Parkinson's" course participants

"What impressed me the most was feeling at ease, even with Parkinson's, which is sometimes hard to do. Knowing that Alice was there too, and we were doing the same things, that we understood each other better, especially in light of how Parkinson's was impacting our lives, and our marriage. I felt that this course built on itself so beautifully, so well. Each lesson built on the previous one, and continuing to go back and revisiting helped reinforce a lot of what we were doing... I would definitely recommend this." – Chuck 

"I really liked that I could participate with him. I learned a lot for myself, but it really helped me understand better about Parkinson's. Why sometimes he needs more time or can't quite connect in some ways. But now we're connected on that. We share this together. ... I've been taught skills to help him, but he has to do it himself." – Alice 

Meet Jim & Monica, Asheville NC "Poised for Parkinson's" course participants

“Physically I've benefited. I think that I can do many more things than I could when I started. I'm more positive, I'm more confident. I have hope for the future. I think that mentally I've improved. I'm more aware of what's going on. I'm more interested in my surroundings. I've started doing things again instead of using it as an excuse not to do things… learning that different way that inspired my confidence. My only regret on this class is that I didn't know it and I couldn't get it three years ago.” – Jim 

“Knowing that, one, you are not alone, and two, you can face this with the knowledge that you've gained, and try to improve. Anyone who has any physical impairment, you feel like you cannot do it yourself. But we feel with all the knowledge that we've gained in the classes I think that it has improved his mental state as well. Neither one of us are blind to the information. We can share it more.” – Monica

My PD Story

People holding hands at class
General PD Community

Dancing Through Parkinson’s

Invertigo Dance Theatre’s Dancing Through Parkinson’s in Culver, CA

Since 2011, Invertigo Dance Theatre’s Dancing Through Parkinson’s (DPT) program has provided dance classes to people with Parkinson's disease, neurodegenerative and aging-related disorders at sites near Los Angeles and Culver City. The classes promote connection, community, physical movement, mental clarity and joy.

Jeanie was diagnosed with Parkinson’s almost eight years ago and participates in both classes. From the warmups, brain teasers, ballet barre and seated and standing choreography, the combination of music and dance helps participants move and stay active. Although medicine can help, exercise is incredibly helpful to manage the symptoms of PD. “I have very few tremors, my posture is relatively erect, my mind is still sharp, I feel confident being in public. I have challenges, but because of Dancing Through Parkinson’s I know that I can overcome them and deal with them if I keep moving and dancing,” Jeanie said. 

Dancing Through Parkinson’s creates community and offers its 100 dancers a safe space to overcome challenges related to PD. “In our DTP classes there are no mistakes, only solos,” said Laura Karlin, Artistic Director. Through DTP classes, participants experience movement in a non-judgmental, positive community. No matter what movement ability, anybody can participate in a class. It is a unique and extraordinary program where everyone, regardless of disease progression, is included, valued and benefits from the class. Caretakers and family members are also encouraged to join. In our DTP classes, everyone can have fun and stay active through dance. 

“I know that I have a community that supports me. We lift one another up, share ideas, and care for one another regardless of what we bring to the dance floor. And the best part is, we get to take it all home with us and realize that the tremors, rigid muscles, and other discomforts can be assuaged if we keep moving. Stay active, stay positive, and keep coming to class because there’s always a reason to dance! Thank you, DTP, for saving my life!”
– Jeanie, Parkinson’s Foundation community grant participant

Group of people exercising at class

In the future, Invertigo plans to reach more communities in Los Angeles by offering bi-lingual classes in Spanish. Our Dancing Through Parkinson's class was featured in Spanish on Telemundo, "Enfermos de Párkinson “danzan a su propio ritmo" on February 6. 

We also plan to reach more people and make our program more accessible through virtual DTP classes. During the COVID-19 pandemic, staying connected through digital platforms has become increasingly important. We are currently working with Teaching Artists to develop a new online program to allow DTP dancers to take classes from their own homes and to stay connected to their DTP teachers, who have been a source of inspiration and support. Our hope is to increase our online presence and foster greater access to and awareness of the offerings of our program.

We hope to grow our DTP program by increasing the number of sites as well as presenting and teaching at more PD conferences and events. In the past, we have taught and presented at events. As we grow, we will continue to be involved in the PD community and contribute even more.

My PD Story

Man in wheelchair at Rock Steady Boxing class
General PD Community

Rock Steady Boxing

Rock Steady Boxing at the MAR-JCC in North Miami, FL

The MAR-JCC, located in North Miami Beach, FL, currently offers the Quality of Life – Senior Wellness Program (TQOL) for seniors through a supervised and monitored comprehensive fitness and exercise program. The TQOL offers seniors with Parkinson’s with a daily program specifically tailored to them, developed in conjunction with the Parkinson’s Foundation. 

Rock Steady Boxing at the MAR-JCC launched in August 2016. The program exceeded anticipation, from an estimate of 40 to the now more than 150 boxers. For the past two years, all new participants have been neurologists’ referrals. Although these physicians have never seen our facility, they see the improvement in their patients ― boxers in our program. 

Based on that improvement and patient testimonials, anyone newly diagnosed with Parkinson’s is prescribed PD medication and referral to our program as a recommended part of their PD treatment. From the doctor’s office straight to Rock Steady Boxing at the MAR-JCC. This unprecedented success continues to reaffirm the profound need for this program as well as the need for its expansion. 

Rock Steady Boxing is offered in more than 900 gyms worldwide. This program uses the mechanics of boxing in an “arduous hour” for those with Parkinson’s by focusing on PD symptoms including balance, stiffness, tremors, coordination and soft voice syndrome. This is accomplished through non-contact boxing, punching a heavy bag, doing footwork, stretching, resistance exercises and aerobic training. The MAR-JCC, an affiliate of Rock Steady Boxing with staff members certified in the program, replicates the program’s proven techniques.

Man with punching bag at Rock Steady Boxing class

Rosh was one of our first boxers, a 48-year-old a hospitalist. Two years later, in 2018, he retired from practicing medicine due to his PD. He had recently lost his father and having to stop practicing medicine was an added hardship. He is one of the most motivated boxers in our program and given his overall good physical condition and willingness to be of service. We suggested he become a certified coach. He would be a tremendous asset to the program. Coaching would help him stay busy and he would also serve as a motivation for other boxers to become coaches. In June 2018, Rosh went to the two and a half day training and became a coach. Since then, he volunteers as a coach twice a week working with our Chair Boxers. Immediately after, he does his own one-hour workout. 

Another boxer is Marc, a 79-year-old retired dentist who initially came to our program in a wheelchair assisted by a trusted aide. At first, Marc kept to himself. The first part of his class involves stretching exercises with all the chair boxers working together while sitting down as a group in a circle. Then a warm up session, with each boxer working individually with an aide, instructor or volunteer. 

This is where the magic started. Rosh began to work with Marc. Week after week, he would work with him. In time, Marc became comfortable with Rosh, who gained Marc’s trust. Marc became more present and outgoing and embraced the challenges posed by Rosh. Rosh transitioned Marc from a wheelchair to a walker and in time from a walker to a cane. 

Marc felt encouraged, supported and confident to walk ― by himself ― several times back and forth across the basketball court. The first time it happened, everyone stopped their workout to contemplate Marc’s incredible accomplishment! It was quite a sight! We were so proud of him and of Rosh as well as thrilled for both. Rosh’s selfless commitment and dedication to a fellow boxer and the impact he has had on Marc’s life is priceless. Marc’s courage and resilience are immeasurable. This dynamic duo shows all of us what determination can accomplish. Marc and Rosh stay in contact outside of class as well. 

Their success story confirms what our boxers chant at the end of every session: impossible is nothing! In March, during the pandemic, we sent Marc some videos that showed his progress to keep him motivated. “As the world is in crisis and I review my life, I wish to thank to thank you for being a part of it, Marc,” he responded.

My PD Story

Man stretching at exercise class
General PD Community

PWR!Moves Program

University of Arkansas for Medical Center Sciences’ Community Fitness PWR!Moves Program

The University of Arkansas for Medical Sciences (UAMS) hosts a free Move for PD class for people with Parkinson’s. The one-hour classes are held twice a week and incorporate 30 minutes of PWR!Moves® movements to aide in mobility, along with 30 minutes of high-intensity interval training. 

Susan, 72, has been living with Parkinson’s for almost seven years. She is a hospice physician who continues to work part time, so she knows the benefit of regular exercise for everyone. She was already exercising by playing pickleball several times a week when she started attending the Parkinson’s Wellness Recover (PWR!) Moves® classes at the UAMS Donald W. Reynold’s Institute on Aging Ottenheimer Therapy and Fitness Center in summer 2019. “The exercises in the Parkinson's program were different,” Susan said. “They were things that really were specific to Parkinson's disease. For me, that was mostly balance. Balance has been something really important for me to work on.”

Susan enjoys the social aspect of the classes, which are her main source of interaction with other people with Parkinson’s. She also likes that the instructor and physical therapist provide the rationale behind what the exercises target and why they work. “I think exercising, now with the help of the PWR! Moves classes, has really helped slow the progression of my disease.”

UAMS hopes stories like Susan’s motivate others with Parkinson’s to join the program. Plans are underway to study the impacts of this exercise program on individuals with Parkinson’s disease, specifically, how exercise affects physical and cognitive performance. There are also preliminary plans to bring this type of exercise to participants in a home environment when travel or distance to travel are barriers.

Raise Awareness

People With Parkinson’s Share Their COVID-19 #KeyToPD

Desk with purel and masks

The Parkinson’s Foundation is dedicated to helping keep our Parkinson’s disease (PD) community safe and healthy during the COVID-19 pandemic that has disrupted so many of our daily routines. Access to gyms and exercise classes have been limited or entirely inaccessible. In-person gatherings are no longer encouraged. Even certain nutritious food items have been harder to find.

With all this in mind, we found it essential to expand our virtual programs. Through PD Health @ Home, we now offer more online health and wellness classes than ever before to ensure you have the resources you need to stay social and active through the foreseeable future.

We asked a few of our friends to share their top tips for managing PD during the pandemic. Here’s what they had to say:

heather_wolynic
MY PD STORY: Heather Wolynic

“Art is my passion and during the pandemic I’ve had more time to paint. I would highly recommend any form of art to help you relax and boost your mood while physically distancing.”

sharon krischer
MY PD STORY: Sharon Krischer

"Find a webinar and participate. There are so many out there."

 

If you have any questions about Parkinson’s and COVID-19 contact our Helpline at 1-800-4PD-INFO (473-4636) or Helpline@Parkinson.org.

My PD Story

Dora Leonard smiling
People with PD

Dora Leonard

I had just turned 50 in 2013 when I was diagnosed with Parkinson’s disease (PD). I remember sitting in my neurologist’s office bewildered, thinking “what is Parkinson’s disease?” I had little to no knowledge about Parkinson’s and there’s no history of anyone in my family with this disease.

I quickly learned the struggle of living with PD. Because of my young age, my neurologist decided not to start treating me with dopamine replacement. I was given dopamine agonist medication instead to trick my brain to produce dopamine.

The medication did not prevent the progression of the disease and by 2017, my Parkinson’s disease was full-blown, and my struggles affected my quality of my life. I went from being a healthy active woman who was like the Energizer bunny to a slow elderly person who cannot stand upright without losing her balance. I struggled with walking, moving, eating and getting dressed on my own… the list was long. I pretty much depended on my husband, family and friends to help me with the simplest tasks.

Despite the invasion of this beast in my life, I refused to let this disease take me down without a fight. Firstly, I relied on my faith to carry me through each day. I pretty much told God I didn’t want to deal with Parkinson’s disease as I don’t have the strength for it. I totally surrendered everything to God as I knew He knows what my future holds.

Secondly, I did my part to keep this disease from devouring me by doing what is needed of me. I exercised, took care of my health and found ways to use what I was going through to help others like me. I started blogging and even wrote a song for people with Parkinson’s.

For four years, I adapted to life with Parkinson’s. I persevered and never lost hope. It was January 2017 when my neurologist decided to start the dopamine replacement treatment as the quality of my life has been seriously compromised. That was the beginning of my miraculous recovery.

It was literally the next day after I took carbidopa levodopa that I realized my body didn’t have to move in one piece. I could independently move my head and hips from side to side. I was deliriously happy and couldn’t believe what was happening. Slowly but surely over the course of the next few months, I was able to do more and more of what I had lost since my diagnosis. We had also moved from Chicago, IL, to Ft. Myers, FL, in 2017. That was the best move as the warmer temperature and 12 months of sunshine allowed me to be more active and exercising became my obsession.

Dora Leonard and husband hiking

As of today, I was able to reverse 90 percent of my Parkinson-related struggles. I play pickle ball, tennis, ping pong, zumbs, swim, run, kayak, dance… I’m actually more fit and healthier now than before I had Parkinson’s. I’m not cured from Parkinson’s but I’ve definitely been restored and given a second chance in life.

I know there are people who are doing the same thing as I am but not reaping the same benefits. I don’t have the explanation but what I have learned with my experience is to never give up. If you had told me I would be doing Zumba and walking without struggling in my eight year with Parkinson’s, I would have definitely thought you were crazy.

Don’t let the struggles and bad circumstances of today dictate your final outcome in life. You never know what your final chapter of your life holds if you give up too quickly. So, have faith, don’t lose hope, and don’t give up for you don’t know what tomorrow brings. Living with Parkinson’s allowed me to understand the plight of anyone struggling with life, and my recovery allows me to share my story to never lose hope as no one knows how all our stories unfold.

Read Fitness Counts to learn more about Parkinson’s and exercise

Raise Awareness

Navigating the Challenges of Young-Onset Parkinson's

Woman talking to her daughter

People living with young-onset Parkinson’s disease (YOPD) ― those diagnosed before age 50 ― are often managing careers, raising families or juggling both at the time of diagnosis. Finding time to take an early, active approach to YOPD care can seem daunting, but it is essential.

Discovering expert team-based health care to treat your Parkinson’s disease (PD) needs can slow Parkinson’s progression and decrease symptoms. This is especially true for people diagnosed with Young-Onset Parkinson’s, where early intervention benefits can be monumental. Younger brains have greater neuroplasticity ― the ability to grow and change in response to therapy.

This article is based on a Parkinson’s Foundation Expert Briefing “Not What I Planned, For Me or My Family” hosted by Allison Allen, MSW, LCSW, from Duke University Medical Center, a Parkinson’s Foundation Center of Excellence.

Young-Onset Parkinson’s Distinctions

About 100,000 of the nearly one million people living with Parkinson’s disease in the U.S. live with YOPD. While there are many motor and non-motor symptom similarities between PD and YOPD, there are also notable differences:

  • Young-onset PD symptoms may progress slower.
  • People living with YOPD can be more likely to experience involuntary movements and muscle tightening or cramping like dyskinesias and dystonia from common PD medicines, such as levodopa.
  • There may be greater fluctuations between “on” and “off” times in YOPD.
  • People with YOPD are more likely to carry genes linked to PD, though not all who carry such genes will develop the disease.
  • Younger brains are capable of more easily learning or being trained or retrained after an illness or an injury.

Prioritize Early Collaborative Care

Though people with young-onset Parkinson’s are often in one of the busiest stages of life, prioritizing self-care is vital. It is also important to acknowledge your feelings surrounding the diagnosis and those of your family. Treat yourself with compassion.

A movement disorder specialist (a neurologist skilled in movement disorders) is central to living optimally with YOPD. Early collaborative care ― including social workers, physical and occupational therapists, and other health professionals ― also improves quality of life. Baseline assessments with multidisciplinary care specialists can help you determine healthcare goals, discover opportunities to stay well or identify areas for improvement.

Steps to Navigating YOPD After Diagnosis

While a diagnosis can be disruptive and unexpected, it doesn’t have to stop you from reaching your goals. When you are ready, think about your current family and career responsibilities, and set up a new long-term plan. Take one step at a time as you move toward achieving your priorities.

1. Build a Care Team: Work with your movement disorder specialists or neurologist to find the medication that is right for you. Your doctor can also help you determine which collaborative care specialists can help you further your goals. The Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) can recommend PD specialists in your area.

2. Talk to Family: Parkinson’s affects everyone in the family. You may be concerned that telling your children you have Parkinson’s will cause undue worry. Fostering an open, honest and age-appropriate conversation early can help children understand PD-related changes and feel secure.

3. Tell Your Employer When You are Ready. Many people with Young-Onset Parkinson’s are still working. You decide when, with whom and how to share your diagnosis.

4. Discover Community: Whether finding a support group, educational program or getting involved with a non-profit, there are many ways to connect with others living with PD. Consider joining the Parkinson’s Foundation online PD Conversations community, which features a young-onset PD discussion group.

5. Genetic Testing: People with YOPD who have children, or who are considering pregnancy, may wonder whether they carry a PD-related genetic mutation. The Parkinson’s Foundation PD GENEration: Mapping the Future of Parkinson’s Disease national testing initiative offers free, confidential Parkinson’s-related genetic testing and counseling.

Planning

Parkinson’s disease impacts the whole family. While it may seem challenging, planning for the future can alleviate stress and foster security.

  • Familiarize yourself with your disability and long-term care insurance policies.
  • Take legal, financial and insurance planning into consideration.
  • Complete health care power of attorney (HCPOA), advanced directive and family care plans.

These documents are critical to your care ― and that of your family ― in an emergency, and they can always be updated. 

Proactive Ways to Live Well

As important as it is to plan ahead, it is even more important to live well in the present. There are many steps you can take today to live your best life with Parkinson’s, start with these:

  • Exercise has known neuroprotective benefits for people living with PD. Good for the mind and body, exercise should be a top priority.
  • Stay ahead of symptoms by prioritizing PD-related healthcare visits early in your journey.
  • Create a daily routine to realize goals.
  • Allow your plans and goals to evolve with you.
  • Grow your support system.

Explore the Parkinson’s Foundation 10 Helpful Young-Onset Parkinson’s Resources for more tips on living well with YOPD.

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