My PD Story

Paolo Tatafiore playing piano
People with PD

Paolo Tatafiore

My name is Paolo Tatafiore. I'm 60 years old, born in Italy, now a permanent resident of the U.S. I will soon become a citizen. I used to be a concert pianist. You can check out some of my performances on YouTube. Two years ago, the first symptoms of a movement disorder started showing up out of the blue.

While performing on stage I was making mistakes I had never made before, and I realized that there was something wrong with my right hand. I was losing control of the fingers. A few months later (in October 2020) I developed a steady tremor in my right arm, that radiated to my right leg and neck. Muscles stiffness and twitching also affected the same areas. I had to give up concerts completely.

The next step was obviously to visit a neurologist. He diagnosed me with Parkinson’s disease (PD). I was devastated. My life disrupted.

At the moment, I receive care from a team of doctors at the University of Miami, a Parkinson’s Foundation Center of Excellence. I take a lot of medication in order to try and keep the tremor at bay. Without it I'm just a useless shaking mass of flesh and bones. My current neurologist is Danielle Shpiner, MD. She is one of the best doctors I have ever met. Patient, compassionate, excellent listener, she has all the knowledge and has answers to all questions. She is up to date with the cutting edge research.

We are now discussing the next steps for me to be put on schedule for a deep brain stimulation (DBS) surgery that will hopefully substitute the most part of the medication in controlling and eliminating the tremor and other symptoms.

Paolo Tatafiore riding an exercise bike for Revolution 2022

She put me in touch with social workers of the University and they introduced me to Parkinson’s Revolution. I want to do my part helping raise funds for initiatives that help the Parkinson’s community.

A book inspired me to exercise consistently to help with my symptoms. It has been about two years, and I have been taking long brisk walks every other day (two or three miles), alternating with short slow walks the remaining days. Sometimes instead of walking I bike ride on the boardwalk in front of the beach. I take a day off every now and then if I feel exhausted.

After two years I can say that the tremor has stopped in the right leg and the twitching has reduced to a minimum. They remain in the right arm though, which is not as much affected by walking and biking. I am now intensifying exercises with and without weights for the arms and neck and I hope to slow symptoms in the arm too, because I think that I have been able to reverse the symptoms in the leg. I can't find any other explanation. If it were the medication that produced the reversal, it would have done something for the arm as well. That didn't happen.

My advice for people who are new to Parkinson’s is to not rely on medication alone. Medication is a temporary suppressor of the symptoms. Everyone knows that there is no cure for Parkinson's disease at the moment. The only proven thing that keeps the disease at bay is exercise. Don't get discouraged, get out and shake it!

It may be hard at first but be consistent and you will get results. If you get stiff while walking, don't give up! Keep doing it, it takes some time but then the muscles will loosen up and you will walk better. It will improve your mood too, as opposed to sitting in the house and getting depressed!

Get moving with your community at a Parkinson’s Foundation fundraising event near you!

Register for Parkinson’s Revolution

Find a Moving Day near you

Science News

LRRK2 Genetics Therapy and Unintended Consequences

Science News Blog header

A lot of excitement has been generated in the Parkinson’s disease (PD) scientific community about the LRRK2 gene. While several genes are linked to developing PD, a LRRK2 gene mutation is one of the most common forms of genetic Parkinson’s. In fact, there are several pharmaceutical companies currently looking to find ways to prevent LRRK2 activation as a potential PD treatment. 

However, is it wise to completely disable the LRRK2 gene? What if this gene plays an important role in other important functions? For example, mutations in the LRRK2 gene have been associated with an increased sensitivity to bacterial infections, as well as other immune-related disorders, such as inflammatory bowel disease. 

Further, dysfunction in the mitochondria (the powerhouse of the cell) in the LRRK2 gene has also been linked to PD. Indeed, keeping mitochondria stable and healthy is essential for providing life-saving energy to dopamine-producing cells. Which begs the question, what if the LRRK2 gene is also involved in how well our immune system works? 

Catherine Weindel, a Parkinson’s Foundation postdoctoral fellow, recently published a LRRK2 study in the journal eLife, titled, “LRRK2 maintains mitochondrial homeostasis and regulates innate immune responses to Mycobacterium tuberculosis” (Weindel et al., 2020). The study investigated whether developing drugs that shut down LRRK2 might unintentionally negatively impact a person’s ability to fight infection. 

Researchers infected normal mice with mycobacterium tuberculosis – the bacterium that causes tuberculosis (TB). As a control, they also infected mice that had the LRRK2 gene removed (known as knockout mice) with TB. Next, they compared the two mice groups’ immune system reactions. They did this by measuring a signaling protein (known as a type I interferon) that is triggered when a cell is infected with a virus to let the immune system know it’s in trouble. 

Results

Many sophisticated tests ranging from gene expression, RNA-sequence analyses, death receptor signaling, to qualitative and quantitative assessments were conducted. The key findings are as follows:  

  • Mice with no LRRK2 gene infected with TB produced the type I interferon – alerting the immune system that an attack was commencing. 
  • Mice with no LRRK2 gene not infected with TB produced the type I interferon – meaning it alerted the immune system to mount an attack when no attack was happening. 
  • Mice with no LRRK2 gene experienced far more severe TB symptoms than the mice with a functioning LRRK2 gene.
  • Normal LRRK2 mice infected with TB produced the appropriate response of the type I interferon, and when not infected with TB, appropriately, did not produce the type I interferon. 

What Does It Mean?

The LRRK2 gene produces a protein that is essential for maintaining healthy, stable mitochondria. Mitochondria play a crucial role in generating the energy required for brain cells (including dopamine producing cells) to survive and to do their job. 

This mouse study suggests that mutated LRRK2 genes may impair the immune responses in the brain to such an extent, it triggers the immune system to attack, even when no harm is happening. Thus, this study findings suggests that great care must be taken when creating drugs or therapies that inactivate the LRRK2 gene, as doing so may have unintended negative effects, such as triggering a chronic high alert immune response and diminishing a person’s ability to fight infection.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about LRRK2 research by vising the below Parkinson’s Foundation resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to all your Parkinson’s questions.

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.

Podcasts

Episode 74: A Multidisciplinary Approach to PD

As for many chronic conditions, a multidisciplinary, team approach can often produce the best outcomes for people with Parkinson’s disease (PD). With many health care professionals specifically qualified in PD working together in a coordinated manner, treatment can focus on current areas of concern and those that come up as the disease progresses. But questions arise as to how often the person with PD and care givers should visit their health care professionals, how to provide care with the least burden and disruption on them, and who should coordinate the care. As the director of the Parkinson’s Foundation Center of Excellence at the Royal Derby Hospital in the United Kingdom, Dr. Rob Skelly discusses the makeup of his team and how they approach patients at different stages of the disease.

Released: February 11, 2020

Raise Awareness

Taboo Parkinson’s Topics and How to Address Them

a couple in bed together

For many, it is embarrassing to bring up taboo topics with your doctor ― from sexual dysfunction to incontinence. However, when it comes to living with Parkinson’s disease (PD), sometimes these topics can be connected to the disease itself or side effects to PD medications.

No topic should be considered off limits to discuss with your healthcare team. The more we normalize and bring awareness to these issues, the less taboo they become. Scroll down to view some of these topics and their connection to Parkinson's, or click to jump straight to a specific topic.

Sexual Dysfunction

Sexual dysfunction is common in men and women with PD. The issue often goes unaddressed as patients, spouses and healthcare providers may not be comfortable discussing sex. Parkinson’s itself may cause sexual dysfunction due to the loss of dopamine. Medications, such as anti-depressants, can also contribute to sexual dysfunction. To note, most PD drugs are not associated with impotency or loss of libido.

Hypersexuality can also be linked to certain dopamine agonists. There are many ways to address PD-related sexual dysfunction, and it all starts with speaking to your doctor. Try writing your symptoms down before your next appointment and telling your doctor you have a sensitive issue you want to discuss.

Learn more

Impulse Control Disorders

Dopamine medications have improved life for millions of people, but researchers believe that some people with PD on dopamine agonists or monoamine oxidase (MAO) inhibitors can develop impulse control disorders: unhealthy levels of gambling, shopping, eating or sexual activity.

If you believe that you or a loved one has an impulse control disorder, try to identify a trend in unhealthy behaviors and discuss it with your doctor. These disorders usually respond to medication changes. Your doctor can often work with you to reduce your dosage or switch to another medication.

Learn more

Caregiver Burnout

For many, stress can be a part of life when caring for someone with a chronic illness such as PD. However, some care partners may have a tough time coping with the fact that they need help. Care partners and their loved ones should address caregiver burnout as soon as you notice warning signs: feelings of anxiety, anger followed by guilt, bitterness towards family members and depression.

In general, 40 to 70 percent of caregivers are significantly stressed, and about half of these meet the criteria for clinical depression. While a challenge in itself, learn your limits as a care partner and find a support network that works for you. Many times, you can work with your loved one’s care team or a social worker to find additional help and resources that work best for you.

Learn more

Palliative Care

For many, the term palliative care is associated with fear. Think of palliative care as supportive care, defined as helping people with Parkinson’s and care partners plan for the future, address non-motor symptoms and provide an extra level of support. Palliative care can help people with PD and their families at any stage.

Palliative care is not the same as hospice care. It does include hospice, which is end-of-life palliative care, but also provides support for patients and families from the time of diagnosis.

Learn more

End of Life Planning

Many adults avoid the subject altogether. However, all adults, even if their health is excellent, should document their wishes and preferences should a health emergency occur. If you have a spouse, partner, children or others you care about, as your disease progresses estate planning can help you ensure that they are provided for and cared for, if necessary.

Get organized. Consider creating a binder with the following main document categories: Medical, Family, Insurance/Property and Finance. Make sure that a close family member or friend knows where to find them in case they are needed. Taking the time to make advance preparations for this inevitability is practical and necessary. Honest conversations about end-of-life planning and care may not be comfortable or easy, but they are important so you can ensure that your wishes are honored.

Learn more

Addressing Uncomfortable Topics with Your Doctor

Doctors usually wait until the end of an appointment to ask, “anything else?” How do you transition into your potentially uncomfortable topic? 

  1. Remember that your doctor has heard it all. She/he wants to help you increase your quality of life.
  2. Give yourself a quick pep talk. Your symptom or issue has been impeding on your quality of life. The conversation will only last a few minutes and may have a simple solution.
  3. Write it down. Give yourself a natural transition in the conversation to bring up your topic. Try something like, “I wrote down some symptoms and/or issues I want to discuss, and they are sensitive in nature.”
  4. Add details. Try to remember when the issue began, how long it has been a problem, when it occurs and all your symptoms.

Your doctor will work with you to address the issue and can often provide guidance or a recommendation.

For more information visit our non-movement symptoms page. You can also discuss any topic with our Helpline at 1-800-4PD-INFO (473-4636).

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

My PD Story

Patrick Welch in office
People with PD

Patrick Welch

Patrick Welch, PhD, Sgt. USMC (Ret.) is a member of, and tireless advocate for, both the veterans’ community and the Parkinson’s community. Dr. Welch was awarded a Purple Heart for his service in Vietnam, founded the Center for Veterans and Veteran Family Services at Daemen College, and previously served as the Director of the Erie County Veterans Service Agency in New York.

Dr. Welch works with the Parkinson’s Foundation to spread awareness about PD, support veterans on their PD journey, and provide education on the critical importance of exercise for people living with this disease.

 

visit Parkinson.org/Veterans for resources

My PD Story

Dr. Kouhsari at museum
Health Professionals

Dr. Leila Montaser Kouhsari

Movement disorders specialist Leila Montaser Kouhsari, MD, wanted to become a neurologist at six, after losing someone she loved and admired. Her grandfather, Mohsen Ziaei, passed away after a devastating car accident left him in a coma, with no brain activity.

“I learned in a very difficult way that if your brain isn’t functioning, you cannot survive,” Dr. Montaser Kouhsari said, who today practices medicine at Stanford Neuroscience Health Center.

Not many can say their career path held true from childhood, but for Dr. Montaser Kouhsari, it did. Throughout medical school, graduate school and her fellowship, she pursued her passion of neurology. Taking it a step further, she kept gravitating towards Parkinson’s disease (PD) — and movement disorders — as a specialty.

“During my training, I met a lot of people with different neurological diseases,” she said. “I found that patients with Parkinson’s were all really nice and always left me inspired by how much they wanted to do everything in their power to help manage their disease and help themselves. I was able to connect with them on that level.”

During her fellowship, she researched the role dopamine plays in cognition (decision-making, motivation, learning and cognitive control) “I thought with my research, I could be useful to this particular group of patients. I ultimately chose Stanford because I could continue my research and help patients.”

Dr. Montaser Kouhsari’s ongoing research can change the future of how we treat cognition symptoms in Parkinson’s. Today, she is working to identify a biomarker (an identifier that can be used for diagnosing Parkinson’s and tracking disease progression) that would monitor cognition changes.

“With current neurological testing, we cannot identify which people with Parkinson’s will develop cognitive impairment,” Dr. Montaser Kouhsari said. “We don’t have a biomarker to assess the progression of the disease or cognitive symptoms. With more advanced testing, we can bring neuroscience testing tools, such as those I developed during my PhD, to nail down cognitive symptoms much earlier on and offer treatment earlier in the disease. This is important because people with Parkinson’s are more at risk of cognitive impairment and dementia.”

In addition to her research, Dr. Montaser Kouhsari regularly treats patients with Parkinson’s, a skill she likens more to an art.

“As neurologists, we need to have a very good rapport and be very observant. Every patent is different — we rely on the history they give us, so we can treat their symptoms and their needs. With this disease, we see our patients over many years and we build a relationship with them and their families, which is very beautiful. You become part of the family. It’s a privilege to be able to join them on this journey,” said Dr. Montaser Kouhsari.

When it comes to answering all her patient’s questions, she often refers them to the Parkinson’s Foundation. “I always use the Parkinson’s Foundation. When people have questions and need resources and materials, or if they’re looking for exercise or support groups, I always point them there. If they want to volunteer or donate, I also advise for them to contact the Foundation.”

Dr. Montaser Kouhsari believes in the work of the Foundation, which why she serves on the Parkinson’s Foundation California Chapter Board. “Throughout my training and career, I have always heard that the Parkinson’s Foundation funds research and fellowships. I am excited to be on the board and look forward to joining the Parkinson’s community at local events.”

When it comes to being a female movement disorder specialist who is part of a neurology division that is majority female at Stanford and treating women with Parkinson’s (who often are not adequately represented when it comes to Parkinson’s), Dr. Montaser Kouhsari shares her keen observations.

Dr. Kouhsari and husband wearing PF shirts

“I can relate to our female patients with Parkinson’s,” she said. “It can be really hard to be a mom and a wife, and having Parkinson’s makes it difficult to fulfill so many responsibilities. I’ve had patients whose families are so supportive — and patients whose families didn’t know how much their mother/wife would be affected by the disease. I think it’s important to be more attentive to our female patients and offer more help.”

When it comes to everyone living with Parkinson’s, as a neurologist, Dr. Montaser Kouhsari’s advice is to “really listen to your body. Your doctor can help provide information about your symptoms and how they relate to medications and your progression, but be observant of your symptoms. We really need as much information as possible to provide the best treatment.”

My PD Story

Bruce Closser sitting on porch
People with PD

Bruce Closser

It was like skiing with a wooden leg.

It was January 29, 2011, and I was competing in the 50-km Noquemanon Ski Marathon. I was only 5 or 10 km into the course when the wooden-leg effect struck. It affected me every time I climbed a hill or pushed my pace. If I relaxed for a minute or two it would go away, but it always returned.

The hopes I had for a podium finish in my age group were clearly not to be fulfilled.

I was seen by regional sports medicine doctors and the Mayo Clinic at that time, but no one could provide a definitive diagnosis. I strongly suspect that this was an early indication of Parkinson’s disease (PD). Other symptoms appeared over time. I knew that something was wrong and that it was getting worse.

It wasn’t until February of 2019 that the diagnosis of Parkinson’s disease became evident. It is a diagnosis that was too familiar: my wife, Sally, also lives with PD.

Excellent medical care, a very active lifestyle, and good social connections have all helped me cope with my diagnosis and live well with PD.

In 2020, another outlet for dealing with Parkinson’s found me: music.

I was wide awake, at 3 AM in October of 2020, with the strains of Dolly Parton’s “9-to-5” running through my brain like an earworm. As I lay there, words started to come into my head —words about Parkinson’s — that fit the 9-to-5 tune. I soon realized that I needed to get up and write it all down or I would forget it.

I got up and turned on the computer.

Sally heard me talking to myself and singing and called out to ask what was going on. “I’m composing!” I called back. Over the next several weeks the entire song came together, but I had no idea what to do with it.

In November 2020, Sally and I had our semiannual appointments with our neurologist at the University of Michigan. At the end of my visit, I suggested that if my doctor had 3 minutes and 35 seconds to waste, I would sing him a song about Parkinson’s that I had written. He agreed, and I played a karaoke version of 9-to-5 and sang along. He got a kick out of it and asked me if I would send him the lyrics! He shared them with some of his colleagues, who forwarded them on to others.

About three weeks later the Parkinson’s Foundation reached out and asked if I could send a video of me singing the song!

I decided if I was going to make a video, I needed a band.

I found a talented local rock group that was interested in working with me. After weekly rehearsals for several months and the band’s patient guidance, we were ready.

We secured an auditorium (no small task in the middle of the pandemic) a videographer and a sound and lighting technician, and recorded We’ve got Parkinson’s, along with a second song that I had written to the tune of Stevie Ray Vaughn’s “Pride and Joy.”

After months of post-production, we finally had our music video! I sincerely hope it brings joy and laughter to others who are dealing with PD.

My Parkinson’s is well managed. I believe that exercise, especially mountain biking, has helped tremendously. I am fortunate to live in a place like Marquette, Michigan where I can ride my road bike and mountain bike on a nationally recognized trail system. There is something magical about the mountain bike. Riding involves balance, coordination, concentration and quick decision making. When I get on the bike, my balance issues disappear and everything is fine.

I strongly encourage others with PD to keep pursuing their passions and their creativity – even in the most unexpected ways!

Videography by Nick Slattery
Editing by Nick Jensen and Nick Slattery
Music performed by Maynards and Friends
Words and vocal by Bruce Closser

Raise Awareness

We Answer the Most Frequently Asked Helpline Questions

Couple using a laptop

In support of the one million people in the U.S. living with Parkinson’s disease (PD) and the hundreds of thousands of care partners, the Parkinson's Foundation provides an invaluable resource, our bilingual Helpline. Anyone in the PD community can contact our Helpline at 1-800-4PD-INFO (473-4636) or Helpline@Parkinson.org Monday through Friday from 9 a.m. to 7 p.m. ET.

The Parkinson’s Foundation Helpline:

  •  Answers questions about Parkinson’s disease symptoms, treatment options and research
  •  Provides referrals to local, in-person, and virtual resources like support groups, exercise classes, and health professionals with training in PD
  •  Helps care partners learn about care options and caregiver resources
  • Guides callers to relevant educational resources like our publications, webinars and podcasts

We recently asked the trained Parkinson's information specialists who answer Helpline calls and emails to share the answers to the most frequently asked questions.

Q: Can you refer a Parkinson’s specialist, exercise class and support group? 

A: Yes. The Helpline can provide names of Parkinson’s movement disorder specialists, neurologists and other Parkinson’s specialists — like a physical therapists, occupational therapists, speech therapists and more — in your area. Helpline specialists can also research information about nearby and virtual exercise classes and support groups.

Q: Is there a special diet that can help with my Parkinson’s?

A: A balanced, nutritious diet is important in Parkinson’s. The best plan is to maintain a varied diet with all the daily nutritional requirements — try to eat lots of fruits and vegetables, lean proteins and whole grains. Many doctors recommend the Mediterranean diet for its ability to help reduce blood pressure and cardiovascular disease. Also, try to drink plenty of water to help with constipation.

Q: My family member told me about a vitamin/supplement/tea that can relieve PD symptoms. Does it work?

A: Many people add vitamins and other nutrients to their treatment regimen, incorporating antioxidants such as vitamin B6, vitamin E, vitamin C, Coenzyme Q10, glutathione, in the hope of slowing the disease. None of these supplemental interventions have been shown to be effective in treating Parkinson’s or slowing disease progression. Be wary of new supplements that claim to cure multiple symptoms or diseases, as they often lack rigorous testing.

Q: Should I not eat protein when I take carbidopa/levodopa (brand name Sinemet)?

A: Most people who are newly diagnosed will not have a problem with a carbidopa/levodopa-protein interference. For some, particularly those living with PD for many years, eating protein-rich foods may reduce or decrease the effectiveness of levodopa. Most people who have trouble with Parkinson’s related to a diet high in protein report that their medications are not working. Levodopa works best when taken on an empty stomach. Taking it 30 to 45 minutes before eating can optimize its effectiveness. Talk to your doctor if you notice any changes in the effectiveness of your medications.

Q: My loved one has become confused and disoriented. Is this part of PD?

A: While cognitive changes can be a common non-motor PD symptom, the symptoms you are observing may not necessarily be caused by PD. Cognitive changes can also be related to depression or sleep disorders. In some cases, confusion and disorientation result from “delirium,” which is a temporary condition in which symptoms are caused by infection or other underlying conditions. Any sudden cognitive change should be reported to the doctor for an accurate diagnosis.

Q: As the primary caregiver, I often feel overwhelmed and unable to keep up with my own needs. What should I do?

A: Reach out for support or ask for help. Up to 70 percent of caregivers are significantly stressed and half meet the criteria for clinical depression. Take immediate action when you find you are ignoring your own needs, feel isolated, experience anxiety, resentment, demoralization or depression. Try to alleviate caregiver stress by recruiting friends and family or hiring a paid caregiver to help with care. Don’t wait, and get help managing caregiver-related anxiety, stress or depression by seeing a psychologist or therapist. Remember that you need to take care of yourself to be well enough to take care of your loved one. For more information, check out these Caregiver Resources.

Q: Is there financial assistance available for people with Parkinson’s?

A: While the Foundation does not provide financial assistance to individuals, Helpline specialists provide referrals to organizations that may be able to help with financial assistance for medication, transportation, basic needs and respite or nursing home care. A good place to start is to locate your nearest Area Agency on Aging office through the Eldercare Locator Service for help finding financial aid and related programs, like the Patient Access Network (PAN) Foundation assistance program.

Q: What other therapies can help with my Parkinson’s symptoms?

A: A comprehensive and multi-disciplinary approach to health care can be beneficial at any stage of Parkinson’s. Building a healthcare team involves taking advantage of not only the expertise of a PD specialist, but the help of a physical therapist, occupational therapist, speech therapist, nutritionist, social worker and others. Some may be able to find all of these professionals in one practice or center, but many will have to explore their community’s resources.

If you have a question that is not listed above, please call our Helpline! While we are happy to discuss any issue, calling our Helpline is not a substitute for seeing a doctor.

No one should have to face Parkinson’s alone. Contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) or Helpline@Parkinson.org with your Parkinson’s questions or join our PD Conversations online community.

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