My brother, Ivan, is a proud U.S. Navy veteran. He is a 6’2”, tall, handsome and young-looking man at 49 years of age. Ivan has given 20 years of his life to our country, and he never hesitates to tell you that he would serve again if asked. After serving in the Navy for many years, Ivan was diagnosed with Parkinson’s disease (PD) in 2019.
I have begun to realize how Parkinson’s disease affects people since my brother received his PD diagnosis a few years ago. Through Ivan’s experience, I have witnessed how Parkinson’s is a serious and life-altering disease. I work with him and assist as much as I can while he researches ways to manage his PD symptoms. I would do anything to care for and help my siblings — those who know me know that this is no exaggeration. I would gladly give my life for my brother as he risked his life for our country and, more directly, for me. To honor my brother’s service, I try to bring awareness to Parkinson’s disease as much as possible.
I appreciate how the Parkinson’s Foundation works to help all people with Parkinson’s disease. One reason I support the Parkinson’s Foundation is to advance Parkinson’s research. Through research, the Foundation has discovered ways to reduce complications from Parkinson’s and significantly increase quality of life for people living with PD. Thanks to medications and exercise, some people have been living with Parkinson’s for decades and have successfully slowed the progression of their disease.
The Parkinson’s Foundation uses research to help people apply strategies to improve their overall lifestyle. While the Foundation has already seen success in their research and care initiatives, continuing to invest in research will help find solutions to make all people with Parkinson’s live better lives.
I want to do everything I can to help advance research toward a cure for Parkinson’s disease. Many employers match charitable donations made by their employees. I work for AbbVie, a pharmaceutical company. When AbbVie announced a giving campaign over the summer, I decided to donate to the Parkinson’s Foundation and the company matched my donation!
I donate to the Parkinson’s Foundation in hopes that there will be easier times for my brother, Ivan, in the future. In the meantime, the Parkinson’s Foundation website is a great place to find more information about Parkinson’s disease.
Make a matching gift through your employer to advance Parkinson’s disease research today.
Finding a Way to Enhance the Survival of Dopamine Brain Cells
Dopamine is found in brain cells. The death of these cells leads to the hallmark movement symptoms of Parkinson’s disease (PD) — including tremor, rigidity and issues with balance. Nitya Subrahmanian, PhD, of the University of Florida, a Parkinson’s Foundation Center of Excellence, received a Parkinson’s Foundation Launch Award to test if boosting mitochondrial function can help dopamine cells in the brain survive.
Parkinson’s movement symptoms are driven by a severe loss of a type of brain cell (called neurons) that makes the chemical dopamine. By the time a person is diagnosed with Parkinson’s, about half of their dopamine cells have already died. This loss continues over time and unfortunately, there are no medications that can preserve the existing dopamine neurons or reverse the disease. To improve quality of life, current treatments enhance dopamine levels and reduce movement symptoms.
Mitochondria are tiny compartments within the cell that are involved in energy production. Up to millions of mitochondria fuel each brain cell. Without enough healthy mitochondria, cells may not make enough energy to support brain function, leading to disease.
Complex I is an enzyme in the mitochondria that contributes to this energy generation. The enzyme does not work correctly in the brains of people with Parkinson’s.
Matthew LaVoie, PhD, at the University of Florida, recently discovered that a new chaperone (a protein that assists in the folding of other proteins) can increase mitochondrial energy levels. Dr. Subrahmanian, under the mentorship of Drs. LaVoie and Benoit Giasson, will study whether this protein can help dopamine brain cells survive in models of Parkinson’s.
Another trait of sick cells in Parkinson’s is the buildup of a toxic protein called alpha-synuclein, which causes the formation of Lewy bodies in the brain. Dr. Subrahmanian will also find out whether this mitochondrial chaperone can protect dopamine neurons from the toxic alpha-synuclein.
To answer these questions, Dr. Subrahmanian will engineer stem cells to create excess amounts of the mitochondrial protein. Stem cells are capable of multiplying and have the potential to form any type of neuron. First, Dr. Subrahmanian will guide them to become the dopamine brain cells typically lost in Parkinson’s. Then she will evaluate the protection that comes from the improved mitochondrial function. She will also use a similar approach in a mouse model.
“Our findings can help drive the development of new Parkinson’s therapies by enhancing mitochondrial function. These research efforts could lead to a profound paradigm shift, with the potential to elevate the treatment from palliative care to cure,” she said.
Of her Parkinson’s Foundation grant award, Dr. Subrahmanian said, “I am sincerely grateful to the Parkinson’s Foundation for specially designing the Launch award for young aspiring researchers like me. This award provides financial support beyond two years of mentored research. It will play a vital role in achieving my long-term career goal of becoming an independent investigator in academia.”
Our story begins in early 1997, when Jane’s bank rejected a check she had written, claiming the signature did not match the one on file. Her handwriting had become unreadable. She had also noticed that when she walked, her dominant arm did not swing, but instead came up by itself and rested stiffly across her stomach. Jane’s primary care physician ran imaging tests to rule out structural problems in her hand. None found, he referred her to a movement disorder neurologist.
The neurologist observed slowness and stiffness in her movement (bradykinesia) and impaired fine coordination in her hand. She received a tentative diagnosis of Parkinson’s disease. Jane was put on carbidopa/levodopa for a 3-month trial, and her symptoms improved. After her Parkinson’s diagnosis was confirmed, Jane’s neurologist changed her therapy to a dopamine agonist, which was to be her drug of choice for the next seven years. Jane’s neurologist did not give her any literature or education about the disease. Since she did not know anyone who had Parkinson’s, the diagnosis did not upset her. As far as she was concerned, a little handwriting problem and her right-arm action when she walked had little impact.
Jane and I had known each other for many years. She was part of my extended family, dating back to when she was in college. In 1998, I decided to retire from my career as a scientist and engineer. I called Jane up one day and told her that I and my Siamese cat, Nefertiti, were going to board my 38-foot powerboat and travel down the Intracoastal Waterway to the west coast of Florida, where we would spend the winter. I asked her if she would like to come. She said yes. We have been together ever since.
For the next six years, we had a great life. We settled in Florida and built a home in the waterfront community of Punta Gorda Isles. Jane established a relationship with a local neurologist, whom she saw periodically. All was well until 2005, when Jane began to experience additional Parkinson’s symptoms. She gained significant weight. She was unable to get a good night’s sleep. During the day, she would suddenly fall asleep, even when talking with someone, waking 10 or 20 seconds later as if nothing had happened. She could hardly get around, even with a walker. Getting out of a chair required assistance. She was also exhibiting tremors in her hands and feet. The situation was not looking good, but everything was about to change because of our self-motivated effort to learn more about Parkinson’s disease.
In October 2005, we went to a Parkinson’s seminar. Our initial interest was to learn about deep brain stimulation (DBS). However, one of the physicians who spoke discussed the various classes of drugs used to treat the disease, and their side effects. He also spoke of the need for drug therapy to change as the disease progresses. As we drove home, I told Jane, “Make an appointment, we need to talk to your neurologist.” Jane’s neurologist discontinued her use of a dopamine agonist. Six months later, she had her life back! She returned to her normal weight and her sleeping problems subsided. She no longer needed to use a walker. The tremors and stiffness were still there but otherwise, life was good. I later learned that some people on dopamine agonist therapy develop compulsive behavior – Jane’s compulsion had been buying fabric, more than she would ever use in a lifetime. With Jane no longer on a dopamine agonist, the fabric purchases stopped!
We had recovered from the brink of needing to find Jane a nursing home, all because we became proactive, educated ourselves and were insistent that Jane’s medical professionals consider changes in her therapy. The changes in the drug therapy eliminated the side effects that were prevalent in 2005, but they did not stop the progression of the disease. By the end of 2006, Jane started experiencing freezing of gait, increased slowness of movement and tremor. Jane could no longer get onto and off a small boat. We sold our boat, but we could not stay away from being on the water. Our solution was to go on cruise ships, from the large ocean-going liners to the smaller inland river boats.
In March of 2010, Jane received her first deep brain stimulation device. She calls the operation a “no brainer,” as there was no pain associated with the surgery or post-surgery. The result was spectacular. Tremors were essentially gone on the right side of her body. Involuntary movements called dyskinesia, which can be a byproduct of Parkinson’s medications, were greatly reduced. We were so pleased with the result of the surgery that a second DBS device was placed in early 2011, which improved symptoms on both sides of the body.
Despite symptom improvements from DBS, freezing of gait soon began to lower Jane’s quality of life. She did not want to go anywhere. She felt like her feet were glued to the floor. I had read that freezing can sometimes be broken by use of a triggering device, so one morning, I went into my shop and built something I thought might help. Jane called it her “launcher,” and she carried it everywhere she went. We also tried different scooter options for longer walks.
A breakthrough in Jane’s treatment came in 2014. While attending a support group, we learned about Parkinson’s Foundation Centers of Excellence. There was such a place for Parkinson’s disease only a three-hour car drive from our home. Jane met with a movement disorder neurologist, Dr. Michael Okun, who set up a comprehensive treatment plan. This plan is updated every six months and has changed our lives for the better.
During 2017 and 2018, we gained even more experience managing the disease. Jane suffered several falls, one of which put her in the hospital for three days followed by an additional seven days of rehabilitation in a nursing home. Other treatments included voice therapy, physical therapy, occupational therapy and multiple sessions with a psychologist. We later moved to The Villages, Florida to be closer to the Norman Fixel Center for Neurological Diseases, a Parkinson’s Foundation Center of Excellence.
Jane and I have gained 25 years of first-hand experience with Parkinson’s disease. Our support group, recognizing that we had learned a lot about Parkinson’s disease and its treatment, asked us to give a talk about our experiences. The word got out and soon we were speaking to support groups on the west coast of Florida and eastern Tennessee, as well as impromptu small gatherings on cruise ships. Every Parkinson’s journey is different, but our individual journeys all have similarities, so there is much to learn from each other.
Navigating your Loved One’s Move to a Long-Term Care Center
Despite your best efforts to keep your loved one with Parkinson’s disease (PD) at home as their disease progresses, a move to assisted living or a nursing home may be necessary when their symptoms become advanced.
The following steps can help you navigate the emotional and practical elements of your loved one’s transition to a care center.
1. Understand that it’s normal to need extra support to cope with how you feel about the move. The time surrounding your loved one’s move can be overwhelming, and most families experience a wide range of difficult emotions.
It can help to say your feelings out loud or write them down, as “getting them out” can make these feelings lighter over time.
Try responding to your feelings with compassion that you are doing the best you can and that you made the best decision available to you.
If you are struggling, turn to people you trust, other care partners, or a counselor, and let them know you’re having a hard time.
2. Know that this move will be a learning curve for you, your loved one and care center staff.
You are learning how things work at the care center and who handles what. Your loved one is learning new faces, adjusting to surroundings and routines. The care center staff is trying to understand the care needs of your loved one, while also caring for other residents.
These adjustments will take some time for everyone. Use the Parkinson’s Foundation Aware in Care kit to help advocate for your loved one’s needs. Try to be patient with yourself, your loved one, and the care center staff during this transition.
How do you choose an assisted living or nursing home?
3. Build and nurture a relationship with the care center staff.
Make time to get to know the entire staff and their role on the care team. Try to be kind and encouraging and give them the benefit of the doubt, praising more than criticizing, as you will need to partner with them to support your loved one.
If changes are needed, prioritize the most important ones, and acknowledge progress. Strive to maintain a positive relationship with the staff, but don’t be afraid to address problems and involve others when advocating for your loved one.
4. Help the staff get to know your loved one on a deeper level to improve care and connection.
It is important for your loved one to feel known by the people in their new home.
Share pictures, stories, and memorabilia.
Personalize their room.
Put together an “about me” album or document that describes your loved one’s preferred name, hometown, names of loved ones, work history, hobbies, interests, preferences, favorite music and TV shows, and accomplishments.
All of this helps to ease conversation, build connections, and individualize care.
5. Use discretion with what you bring to the care center.
If possible, avoid keeping items in the care center that you cannot replace. Label your loved one’s items. Consider creating replicas for them to enjoy, like copies of favorite photos, a bedspread that looks like a family quilt, decorations that look like favorite items. Substitute valuable or sentimental jewelry with similar items of lessor value.
6. Be flexible with your visits.
Visits might be stressful at times, so give yourself permission to end a visit sooner than you had planned if you are feeling overwhelmed. Similarly, pay attention to cues that your loved one isn’t up for a visit. Many people feel pressured to spend a certain amount of time with their loved one in a care center but in most cases, the quality of time spent is more important than amount of time.
7. Focus on making a visit meaningful.
Consider new ways of connecting with your loved one. Share stories, recount fond memories, and ask questions to keep help them feel connected to their identity and history.
If your loved one is not especially talkative, bring an activity or item to focus the visit around or incorporate sensory elements to your time together.
Bring a pet if permissible, a craft, or a plant.
Share a photo or story about someone they know.
Play their favorite song or bring a favorite food or drink.
Take your loved one outside for fresh air if possible.
Helping with small care-related tasks, such as nail care, hair care, make-up, shaving, or applying lotion, can also foster connection.
8. Work with the staff if your loved one has a hard time when visits end.
If your loved one struggles with your leaving, work with care center staff on a plan. Some families find their loved one has an easier time with a visit ending when there is a distraction, like the beginning of a meal, a program or activity, or a care-related task.
If your loved one is confused about why they are not leaving with you, give them a reason for your leaving that they would support, like “I have to run some errands before dark,” or “I’ve got to get back to work.”
9. Coach other family members or friends about how to support you and your loved one.
Let your network of family and friends know that your loved one would appreciate phone or video calls, cards, visits or care packages with specific treats. Give them tips for a successful visit. Share photos and stories about how your loved one is doing, as well as how you are doing, to give them an opportunity to offer you both support in some way.
10. Reconnect with cherished relationships and activities.
If caring for your loved one has been your main focus for months or years, you might feel tired and lost after they move. Take the time you need to rest and then slowly re-engage with the people and activities that are meaningful to you. While it might seem forced at first, caring for yourself by reconnecting with your interests and other people is important for adjusting to this phase of your caregiving journey.
Social worker, lawyer and health care technologist Radhika Iyer was diagnosed with Parkinson’s disease (PD) in 2015 — a difficult experience that spurred her ongoing, inspiring road to PD advocacy.
She’s since served a three-year advisory term on the Parkinson’s Foundation People with Parkinson’s Advisory Council — a panel of people impacted by Parkinson’s who shape the Foundation’s programs and priorities. Prior to that, she was a Parkinson’s Foundation Western New York board member.
These days she uses technology to forge community, friendships and understanding with others with PD, while breaking down stigma surrounding the disease.
She credits a dear friend, whom she has since lost to breast cancer, for recognizing her initial PD symptoms and urging her to visit a neurologist.
“I walked into the room, the neurologist looked at me, had about a 20-second conversation and immediately said ‘Here’s Sinemet. Start the medication,’” Radhika said. “That shocked me.” Radhika left her appointment with a prescription and little understanding of what a Parkinson’s diagnosis meant.
Radhika and Dharma were part of our photo shoot in July 2022.
Radhika and her husband of 36 years, Dharma, PhD, a chemical/environmental engineer, were both dedicated to finding answers, and a doctor they could trust. They sought a second opinion and left that appointment even more confused. Radhika was given an incorrect diagnosis of corticobasal degeneration (a rare progressive neurological condition sometimes initially diagnosed as PD). The couple soon realized self-advocacy was critical and began empowering themselves with education.
Their journey led them to move from New York to North Carolina, nearer to their adult children as well as a movement disorder neurologist at Duke Health Movement Disorders Center, a Parkinson’s Foundation Center of Excellence, who reconfirmed Radhika’s initial PD diagnosis.
The couple settled in a community for active people 55 and older — a perfect fit for the pair who, at the onset of Radhika’s diagnosis, spent their weekends with a group hiking 200 miles across New York state.
Radhika and Dharma stay active, knowing that without mental and physical exercise and the right medications, Parkinson’s symptoms can progress quickly. Radhika also works to incorporate complementary therapies alongside traditional medicine. In addition to her neurologist, Radhika works with a naturopath (a health professional who employs natural therapies) and a physical therapist who specializes in brain diseases, such as Alzheimer's and a PD.
“When I got first diagnosed and when I started finding out about my disease, I was running helter-skelter, getting emotional,” Radhika said. “I didn't have a mentor.” She’s since learned a great deal about how to live well with Parkinson’s and she’s committed to sharing what she knows with others and would love to establish a PD mentorship program one day.
“We need mentorships — people like me who've been through the ringer with PD would like to share this information with others coming on board trying to understand their disease,” Radhika said. “A newly diagnosed person is going to begin to face the disease and is not quite sure where to begin. The community can help one another.”
To that end, she’s forged her own community and built friendships with people with PD and care partners across the nation. She is making an impact on a national scale in her volunteer role with the Parkinson’s Foundation, helping bring awareness to the disease and dispelling stigma.
Radhika and Dharma are as committed to each other as they are to advocating for the PD community and debunking disease-related myths.
“In many Eastern/Asian countries, there's always a sense that past karma may have precipitated this disease,” Dharma said. “This is not a karma thing. You're not paying a price for a past life.” Recognizing there are genetic, environmental and other factors behind diseases is important, he added.
“One of our goals on this journey for both Dharma and I — from a community standpoint — is to encourage Indian individuals who have this disease to come forward and advocate for themselves and advocate for others"
“What I have done for my own sense of purpose and sanity is to have a friend with Parkinson's — an Indian woman who I found on a Facebook chat for Parkinson’s — who I call first thing in the morning just to see how we are doing, so that we feel grounded,” Radhika said. Her friend lives in New Jersey but was raised in India, in the same community as Radhika and Dharma. Along with the woman’s husband, they all share the same first language.
The women have connected with other people in the U.S. with Parkinson’s who also hail from India. They organize regular Zoom calls to connect and just talk.
Radhika has reached out to people all over the U.S., and recently Canada to ask them to join the group’s Zoom calls. As Radhika has discovered and shared with her new friends, there is more to this community than just Parkinson’s. “Just connecting and speaking the same language can make all the difference,” Radhika said.
8 Questions You’ve Always Wanted to Ask About Deep Brain Stimulation Surgery
Deep brain stimulation (DBS) is a surgical therapy used to treat certain aspects of Parkinson’s disease (PD). Mel Mitchell, age 74, was diagnosed with Parkinson’s disease in 2013. Mel underwent DBS surgery in 2020 with the goal of improving his PD symptoms. We asked the most frequently asked questions for someone who has undergone this brain surgery.
Why did you decide to undergo DBS surgery?
I was diagnosed with Parkinson’s nine years ago. I had been taking the medication Sinemet since my diagnosis, but Parkinson’s medications only have so much impact when it comes to improving motor symptoms. About two and a half years ago, it seemed that DBS would be the next logical step in my Parkinson’s journey. When I spoke with my neurologist and a neurosurgeon, they agreed I would be the perfect candidate for DBS.
Did you have any fears going into surgery?
My biggest fear was that the surgery wouldn’t work. There is a lot of preparation that goes along with getting ready for DBS surgery, so I didn’t want it to be for nothing. I also have a blood clotting disease which creates a bigger chance of blood clots, so I need to manage that whenever I go into surgery.
One thing that helped ease my fears was meeting with a representative from the company I used for my DBS instrument. She talked to me and my wife about DBS and she attended my surgery and my fine tune sessions. She was extremely helpful in sharing real life examples and answering our questions.
What was it like getting brain surgery?
Surgery was strange for several reasons. When you get fitted for DBS, they put a metal collar on you to make sure your head doesn’t move while they are drilling and inserting the leads, which are implanted to control brain activity. I'm claustrophobic, so even though it wasn't painful, it felt odd for my head to be in such a restrictive collar. I was awake for the entire surgery so that the neurosurgeon could ask me questions as he placed the leads.
Two weeks after the first surgery, I had a second surgery to place the battery and connect the leads. This was done under general anesthesia and I went home the same day. The DBS device wasn’t “turned on” for another 4 weeks.
Did DBS work for you?
I would say that except for my memory, my symptoms are better since DBS. My walking and gait were very much improved for the first couple of months. After my surgery, I wrote my friends a note that said, “This is a miracle.” It wasn't a miracle for very long, but it felt so good that my symptoms had improved after the surgery.
Stiffness was also an issue for me, which DBS has helped improve. For someone with Parkinson’s, I never had much of a tremor, but tremor is usually the symptom most well-taken care of by DBS.
My neurologist has continued to adjust my device. In fact, this month we made an adjustment to my right side that has significantly improved my walking. We will continue to adjust the device as my symptoms progress.
What was the most unexpected result of DBS surgery?
I wasn’t expecting to experience memory problems after DBS surgery. My short-term memory is where I have the most trouble. You can say something to me and if you ask me about it tomorrow, I'll say, “Did we talk about that?”
These memory problems have been especially hard on my relationship with my wife. We’re going to see a counselor to discuss this issue. I don't think everyone who has DBS surgery experiences problems with memory, but people should be aware that it might happen.
How did your support network help you throughout this process?
Prior to the surgery, we took some classes through the Parkinson’s Foundation to learn more about DBS. My wife is my care partner, and she helped keep me grounded. I have a tendency to say things are fine when they're not, so she was quick to point out what we needed.
For other support, I wish my surgeon would’ve talked with me more about the results. We had a post-operation discussion, which didn't last long because things were going so well at that time. I haven't talked to him since that initial post-operation appointment.
What do you wish you knew before getting DBS?
I wish I had a better understanding of how DBS surgery would impact my care partner. The surgery directly affects your care partner because they have to adapt to what you, as someone with Parkinson’s, can do during or after the surgery. It’s been hard for my wife because she has to manage things in our life that she never used to have to manage. If people are going to get DBS, they need to include their care partners in this decision.
Do you have any advice for someone who is considering DBS?
DBS is a powerful tool, but much like the Parkinson’s medications most of us take, the surgery only has so much impact. It’s important to manage your expectations. Be as real and honest about the situation as you can be. If you have a solid understanding of what's happening, you won’t be expecting results that are out of reach for you.
Watch our Surgical Options Neuro Talk to learn more about deep brain stimulation and talk to your neurologist to find out if you may be a candidate for DBS surgery.
My journey with Parkinson’s began in 2012 at the age of 31 with a small tremor in a finger. My symptoms slowly progressed to my left hand and foot and I spent the next 2 years seeking a diagnosis before a movement disorder specialist identified my symptoms as Parkinson’s. I didn’t know anything about the disease at the time of my diagnosis so I started learning as much as I could.
I’m grateful to have had bilateral Deep Brain Stimulation (DBS) surgery in 2018 to help manage my tremors, ongoing medication management, Botox injections to manage my focal dystonia, and physical therapy to keep moving. Today, while no longer able to work I can focus my energy and time on all aspects of my health and wellness. As a single parent to a precocious 3-year-old, daily living is a challenge but with support from my family and online community I am at a place in my life where I am happy and content.
At the time of my diagnosis I was in the best physical and mental health of my life, unfortunately Parkinson’s changed all of that. I didn’t take the time in my life to slow down and process my diagnosis and I paid a tremendous price for it. My experience is a cautionary tale but also one of redemption and grace.
My advice to someone newly diagnosed is to focus as much energy and effort on your mental health as your physical health. Find a mental health therapist, identify healthy coping mechanisms, join a support community whether it’s online or in person and process your diagnosis. I’m really grateful to the YOPD Facebook group community for being such a great resource for information and a place to ask questions and to share my experiences. It’s here that I met other LGBTQ people living with Parkinson’s and my friend Jason. As a gay man, living with Parkinson’s you can feel even more isolated, but having a gay friend going through the same experience, I no longer feel alone.
The biggest lesson I have learned is we are not alone. Life with Parkinson’s is possible. Our identities are layered with different facets of who we are as people. Today, I’m happy to share that I’m an out and proud gay man living with Parkinson’s disease.
My Parkinson’s disease (PD) journey began by God’s grace. I applied for a new position as a sleep center coordinator. I had no idea what the job entailed, but coordinator appealed to me as something new and different from my past positions. I interviewed with the Director of Neurosciences — having no idea what neuroscience involved. At the end of the interview, the director stated I would be bored with that position by end of week two. She said, “I have a Movement Disorder Coordinator position that I think will be a great fit for you.” I said yes to that position in April 2004 and began my more than two-decade journey with the Parkinson’s community.
My role as a Movement Disorders Center Coordinator spans across 20 years and three healthcare systems. I have learned a lot and this career afforded me endless new family members on a regular basis.
My role includes scheduling, insurance authorizations, educator, community outreach and supporting patients and families on the journey with deep brain stimulation (DBS) . To sum it up...I am the one point of contact for patients, staff, physicians and the PD community. My purpose is to be a resource or connect you with the resources needed on the journey living with Parkinson’s.
My passion is to spotlight diversity and inclusion in the PD community. Having worked in this community for two decades I rarely see all nationalities represented. I know PD is not an exclusive diagnosis, so I work to educate underserved communities, provide resources and connect them to others that look like them and share the journey of living with PD.
Living with a chronic disease can be isolating and affects one’s mental health. Acknowledging that your mental health is “unhealthy” can be challenging. It’s a daily battle for many.
I help patients understand that it’s okay to not to be okay. Your brain is no different than a broken bone. If you break a bone, you contact the specialist or the orthopedic doctor for treatment. We must become comfortable contacting the specialist for our brain when it’s not aligned.
PD patients and families are my heros/sheros. They inspire me to think outside the box and advocate for different processes to change the narrative. My goal is to remove barriers, educate patients and families and empower them to live their best life with PD.
Tackling Parkinson’s from All Angles: A Movement Disorder Specialist’s Story
Movement disorder specialist and researcher Matthew Burns, MD, PhD, works to improve health outcomes for people with Parkinson’s disease (PD) from two distinct but complementary angles.
Dr. Burns diagnoses and treats patients with all forms of parkinsonism while pursuing lab research focused on the mechanisms of PD and its number one risk factor — the aging brain.
Dr. Burns’ patients at the Norman Fixel Center for Neurological Diseases at the University of Florida, a Parkinson’s Foundation Center of Excellence, benefit from innovative PD care, while the broader community benefits from his scholarly contributions to the field of neuroscience.
“It is an exciting time in neurology, compared to even a generation ago,” said Dr. Burns. “Across the spectrum, there is a greater appreciation that investment in research creates real, meaningful returns.”
The Parkinson’s Foundation has advanced the training of specialized Movement Disorders Specialists like Dr. Burns through the Movement Disorders Fellowship Program.
Awards are made to institutions to support two-year training of a fellow. Since the distribution of the first award in 1980, the Foundation has invested more than $15 million toward the training of more than 150 movement disorders neurologists.
Selected by the University of Florida as a recipient of this Fellowship in 2018-2020, Dr. Burns received training and mentorship on the complex motor and non-motor manifestations of Parkinson’s and other movement disorders.
Dr. Burns explained that most academic fellowships are 12 or 24 months, and that young researchers must complete clinical training, establish collaborations, technical expertise and gather preliminary data to get a grant that supports their research time by month 25. “If you miss this short window of opportunity as a young faculty member, even if you have a strong interest in research and are quite motivated, you have significant clinical obligations that make it very difficult to continue doing this kind of work,” Dr. Burns said.
“In contrast, my fellowship funded by the Parkinson’s Foundation and the supportive environment at University of Florida were both critical in garnering the necessary funding, resources and tools that set the stage for success,” said Dr. Burns.
Dr. Burns was initially inspired to pursue PD research and care during medical school, as he witnessed his parents’ close friends — Uncle Jim and Aunt Pat — struggle with complications of Jim’s PD.
“Uncle Jim was an accomplished trial attorney — public speaking and his public persona were very important to him; his memory was iron-clad. His debilitating non-motor symptoms like memory loss were a significant burden on him and Aunt Pat,” said Dr. Burns. “It had a real impact on me, and I realized how important it was for physicians and researchers to try to address not just the motor symptoms of PD, but also the non-motor symptoms.”
Dr. Burns’ research interests include investigating co-pathologies in PD, where other diseases intersect with PD and cause atypical, often non-motor, symptoms. He is also investigating the processes of aging. Dr. Burns recently received funding from the National Institute on Aging to advance understanding of the root processes that produce aging, and how aging affects cognition in PD.
“How the aging process interacts with disease, and produces the symptoms that we see in clinic, is not well understood at all. Additionally, aging affects performance at work, interactions with family, and quality of life. The research community has begun to focus on aging and particularly how to modulate this physiologic process to produce better health with advanced age and extend lifespan for humans.”
In the last several years, Dr. Burns has studied non-invasive forms of deep brain stimulation in rat models of PD with the potential capacity to slow or stop disease progression. “Really what is lacking in the field is disease modifying therapies, which get at the underlying causes of Parkinson’s. There are a whole host of technologies that have evolved in deep brain stimulation that hold some promise of doing just that,” Dr Burns said. “Early-stage clinical trials of such treatments in humans holds significant promise.”
Dr. Burns, who maintains his connection to the Parkinson’s Foundation as a speaker at educational events, credits the Foundation for being a comprehensive, reliable resource for his patients.
“The Parkinson’s Foundation offers a forum to ask questions, interact with others who are going through the same thing, and connect with physicians and institutions that are doing comprehensive care and translational research in this area,” Dr. Burns said. “The Foundation truly functions as the connective tissue for all these collaborations in the field, and that has a tremendous effect on my patient’s lives.”
Find a movement disorders specialist in your area at Parkinson.org/Search or call the Helpline at 1.800.4PD.INFO (1-800-473-4636).
“When I sat down with Orien, he told me that no one in his community understands Parkinson’s disease (PD) and we need to do something about it,” said Heather Simpson, OTD, OTR/L, occupational therapist, and one of three team leads that manages the “Parkinson’s Disease Outreach Program to African Americans in Alachua County” program.
Orien tries to stay proactive when it comes to his health and wanted to help his community do the same. “In the African American community, we get education mostly about things like arthritis, blood pressure and diabetes,” Orien said. “Once I was diagnosed with Parkinson’s, I realized that it is much more than ‘the shakes,’ it was also things like slowness and speech changes. So, I felt the need to make sure that other African Americans were getting education about Parkinson’s that might help them in getting earlier and appropriate care.”
The program was funded through a Parkinson’s Foundation community grant, which supports local health, wellness and educational programs that address unmet needs across local Parkinson’s communities. In 2021, the Foundation distributed $2.2 million throughout 143 community-based grants.
“We could not have offered this project without the support of the Parkinson’s Foundation,” Heather said. “Having the Foundation’s name behind it proves essential when reaching out to people. We provided Foundation materials — including the 10 early signs brochure — at all our events to help spread awareness.”
With the backing of the Parkinson’s Foundation and UF Health, Heather and Drs. Irene Malaty and Ashley Rawls kicked off the program with the mission to empower the black and African American community through Parkinson’s education.
A misconception when it comes to Parkinson’s is that the disease only impacts older, white males. Due to under representation in research and a myriad of socio-economic reasons, Black people with Parkinson’s are often diagnosed at an alarming lower rate than white people with PD and are diagnosed later — once symptoms have already begun significantly impacting quality of life.
“We wanted to get the word out, so we began with posting to social media, we hosted a local webinar through the University of Florida, Dr. Rawls spoke on a podcast for physicians, and we included a patient story in our community newsletter,” Heather said.
Next, Heather and her team set out to plan three in-person events, hoping to host each one in a local church. It became a team-wide effort, as staff helped connect the team with churches in the area.
Each event’s agenda was carefully orchestrated. “We listened to the integral feedback from members of the Parkinson’s Foundation People with Parkinson’s Council, who said that the Black community wants to hear from Black healthcare professionals,” Heather said.
Speakers for each event included three leading Black team members from the Norman Fixel Institute for Neurological Diseases team: movement disorders specialist (a neurologist with specialized training) Dr. Rawls, a rehabilitative professional (either occupational therapist or physical therapist). Terrica Scott, the team’s administration professional, was also integral to the program’s success as she created a game to quiz attendees and hand out prizes to ensure maximum participation.
The program achieved the unique and powerful angle of not only introducing Parkinson’s and how it works in the brain, but also explained what attendees can do if they recognize early signs of the disease.
“While not a fun topic, this is incredibly important information to get out there,” Heather said. “People were amazing and thankful. They wanted to take the information to their church group and their family. They would tell us, ‘I don’t have Parkinson’s, but this helps me understand my friend who has it.’ And ‘This helps me in the future, if I ever have Parkinson’s, I know where to go.’”
The program did not end with the in-person events. Each attendee, and anyone they referred, was offered to attend a clinic day at the world-renown Parkinson’s center. What is generally a six-month wait to see the Parkinson’s specialized team, was fast-tracked.
“Physicians opened a special clinic day — and we have another one coming up,” said Heather. “We received five referrals as a result, one person already had a Parkinson’s diagnosis but was under-treated and we were able to get them into rehabilitation for the first time, and one person received a Parkinson’s diagnosis.”
The program will continue to work towards furthering access to care. To find an upcoming event near you, visit Parkinson.org/events.
“At each event someone would say, ‘I already have diabetes, why would I want to be diagnosed with something else?’ We want to ensure that everyone with Parkinson’s can lead a life that it meaningful for you, an early diagnosis and finding expert early on can help make that a reality,” said Heather.
Through her career, and new experience co-leading this program, Heather wants all people with Parkinson’s to never be afraid to ask questions, “Advocate for yourself and seek help early.”
