APDA remains steadfast in its mission to support those impacted by Parkinson’s disease as new law provides hope for accelerated progress toward a cure

NEW YORK, NY, JULY 3, 2024 – The American Parkinson Disease Association (APDA) is celebrating the President’s signing of the National Plan to End Parkinson’s Act yesterday, marking the enactment of the first-ever federal legislation dedicated to curing and preventing Parkinson’s disease (PD) and ensuring quality care for those impacted by this chronic and progressive neurologic disease.

This is an historic moment for the one million people currently living with PD in the United States, the 90,000 receiving a new PD diagnosis each year, and the larger PD community, including the many advocates who have supported this legislation. APDA is proud to be counted among them.

Originally introduced by Congress in 2022, The Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act – in short known as the National Plan to End Parkinson’s Act – was passed by the House of Representatives on December 14, 2023, and in turn by the Senate on May 23, 2024. After passing through both houses of Congress, it made its way to the President’s desk where it was signed into law yesterday.

Under the National Plan to End Parkinson’s Act, the Secretary of Health and Human Services will carry out the National Parkinson’s Project to prevent, diagnose, treat, and cure PD, including the establishment of an Advisory Council comprised of federal agencies, people with PD, care partners, researchers, clinicians, and other non-federal experts. The Council will advise the Secretary on PD-related issues as the National Parkinson’s Project makes progress by:

• Providing information to influence future federal funding
• Coordinating PD-related research and services across federal agencies
• Promoting the development of safe and effective treatments
• Improving early diagnosis and patient care
• Assessing the multi-faceted impact of PD on patients, care partners, and families
• Collaborating internationally
• And more

While this legislative victory marks a significant step forward, APDA remains steadfast in its mission to provide the support, education, and research that will help everyone impacted by Parkinson’s disease live life to the fullest. Through a nationwide network of Chapters and Information & Referral Centers – as well as extensive virtual programming and a robust resource library – APDA helps people with PD and their loved ones build a community and assemble the resources and support they need to make their journey more positive. APDA connects people to the information that helps them feel more in control; to the medical experts who can help them manage their disease; and to the support and services that can help them feel more empowered and less alone.

“This marks a victory for the Parkinson’s disease community,” states Leslie A. Chambers, President & CEO, APDA. “We will continue to fight for a cure for Parkinson’s disease, and we are emboldened by the passing of the National Plan to End Parkinson’s Act. But for now, the need for APDA’s programs and services remains as vital as ever and our commitment to improving the lives of those affected by PD is unwavering. There’s still a diagnosis every six minutes, and we are here for every one of them.”

To learn more about APDA programs, services, support, and PD research, visit www.apdaparkinson.org, call 800-223-2732, or email apda@apdaparkinson.org. Resources and support are available in English, Spanish, and Chinese.

About the American Parkinson Disease Association:

The American Parkinson Disease Association (APDA) is a nationwide grassroots network dedicated to fighting Parkinson’s disease (PD) and works tirelessly to assist the more than one million people with PD in the United States live life to the fullest in the face of this chronic, neurological disorder. Founded in 1961, APDA has raised and invested more than $282 million to provide outstanding patient services and educational programs, elevate public awareness about the disease, and support research designed to unlock the mysteries of PD and end this disease. To join in the fight against Parkinson’s disease and to learn more about the support APDA provides nationally through anetwork of Chapters and Information & Referral (I&R) Centers, as well as a national Research Program and Centers for Advanced Research, please visit us at www.apdaparkinson.org.

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Today we celebratethe President’s signing of the National Plan to End Parkinson’s Act, marking the enactment of the first-ever federal legislation dedicated to curing and preventing Parkinson’s disease (PD) and ensuring quality care for those impacted by this chronic and progressive neurologic disease.

This is an historic moment for the one million people currently living with PD in the United States, the 90,000 receiving a new PD diagnosis each year, and the larger PD community, including the many advocates who have supported this legislation. APDA is proud to be counted among them. The bill was initially introduced by Congress in 2022; it passed through the House and Senate by the end of May 2024; and was presented to the President for signature just a few days ago; and was signed into law yesterday. People with PD, care partners, health care professionals and many others helped make this new law possible by reaching out to their local legislators and making their voice heard.

Under the National Plan to End Parkinson’s Act, the Secretary of Health and Human Services will carry out the National Parkinson’s Project to prevent, diagnose, treat, and cure PD, including the establishment of an Advisory Council comprised of federal agencies, people with PD, care partners, researchers, clinicians, and other non-federal experts. The Council will advise the Secretary on PD-related issues as the National Parkinson’s Project makes progress by:

• Providing information to influence future federal funding
• Coordinating PD-related research and services across federal agencies
• Promoting the development of safe and effective treatments
• Improving early diagnosis and patient care
• Assessing the multi-faceted impact of PD on patients, care partners, and families
• Collaborating internationally
• And more

This new law provides renewed hope for accelerated progress towards better treatments and a cure. Leslie A. Chambers, President and CEO of APDA, states “This marks a victory for the Parkinson’s disease community. We will continue to fight for a cure and we are emboldened by the passing of the National Plan to End Parkinson’s Act. But for now, the need for APDA’s programs and services remains as vital as ever and our commitment to improving the lives of those affected by PD is unwavering. There’s still a diagnosis every six minutes, and we are here for every one of them.”

APDA works tirelessly every day to connect people to the information that helps them feel more in control; to the medical experts who can help them manage their disease; and to the support and services that can help them feel more empowered and less alone.

We will keep you posted about the next steps in this process as the Advisory Council is formed and begins its critical work.

The post Historic News for the PD Community appeared first on American Parkinson Disease Association.

NEW YORK, NY, JUNE 24, 2024 – The mission of the American Parkinson Disease Association (APDA) is to provide the support, education, and research to help everyone impacted by Parkinson’s disease (PD) live life to the fullest. To promote health equality and access to care, education, and support for all those affected by this disease, APDA is committed to expanding its reach to under-served, under-studied and under-represented communities. The organization’s latest step in this direction is the launch of two newly transcreated resources – their Walking You Through Parkinson’s Disease webinar and Be Active & Beyond exercise guide – which are now available in Mandarin and Simplified Chinese, respectively. Both resources can be viewed on APDA’s website, and the Be Active & Beyond exercise guide can also be mailed as a hard copy, all free of charge.

“We are so pleased to add these key resources to our library as the next step in better serving the Chinese community,” states Leslie A. Chambers, President & CEO, APDA. “Everyone deserves the same level of care and support, but when there is a language barrier it can be challenging to get access to the information you need to understand your diagnosis, to feel empowered, and to make decisions about your treatment plan. There is a severe lack of credible Parkinson’s disease information available to those who speak Chinese, and we are eager to correct this as much as we can now and moving forward.”

APDA’s Walking You Through Parkinson’s Disease webinar is an essential starting point for those who are newly diagnosed or anyone who is looking to learn more about PD. It provides a comprehensive overview of PD, including an explanation of the disease, common symptoms, available treatments for disease management, practical tips on caring for someone with PD, research currently underway, and more.

Research shows that exercise is a vital component of PD treatment. APDA’s Be Active & Beyond exercise guide provides timely information on exercises designed specifically for people with PD. It includes a daily exercise program complete with step-by-step instructions with images for clarity, as well as an exercise log to help track efforts. The guide provides the information and tools that will get you started, or keep you going, on your journey toward improved wellness.

These two new resources join those previously transcreated by APDA for the Chinese community:

• The APDA Parkinson’s Disease Handbook can be thought of as the written counterpart of APDA’s Walking You Through Parkinson’s Disease webinar. It is a reliable reference guide for those seeking a comprehensive overview of PD.

• APDA’s Medical ID Card for those with PD. Many people with PD exhibit symptoms that can be misconstrued, and the Medical ID Card can help alleviate these misunderstandings and put people at ease. It can also serve as an important form of communication with first responders when patients are in an emergency situation. The common visible symptoms of PD such as tremor, a masked expression, balance issues and freezing of gait can cause others to think the person with PD is under the influence of alcohol or drugs or is acting suspiciously. APDA’s Medical ID Card not only clarifies the medical issue at hand, but also provides important emergency contact information.

To ensure that their Chinese resources are accurately translated and culturally relevant, APDA enlists the help of several medical experts and staff who are fluent in the language. Dr. Tao Xie, a movement disorders neurologist at the University of Chicago Medical Center and the Medical Director of the University of Chicago APDA Information & Referral Center, has played a key role. He has stated, “many Chinese patients with Parkinson’s disease may find it difficult to fully understand the complexity of the disease and various terminologies in English. Their access to specialty care may not always be possible and their questions related to Parkinson’s disease may not be always properly answered. These resources break the language and terminology barriers, bringing up-to-date expert information to Chinese-speaking members of the Parkinson’s community. This helps them to better understand the disease features, and its diagnosis and treatment, and connect them to the people and organizations who care about them and will support them so they can live life to the fullest.”

In addition to these resources, APDA recently partnered with some of the Chinese researchers whose PD-related projects APDA has funded to discuss their work in Mandarin-spoken videos. These videos will help more people understand the exciting work being done in the realm of PD research and can provide hope and optimism regarding the future of PD:

• Digital Biomarkers for Monitoring Parkinson’s Disease: Dr. Yuanfang Guan, associate professor at the University of Michigan, discusses how her team’s innovative approach to signal processing – at the intersection of machine learning and PD – is paving the way for early detection and objective evaluation of disease progression.
• Using Augmented Reality Cues to Alleviate Freezing of Gait: Dr. James Liao, associate staff at the Cleveland Clinic’s Center of Neurological Restoration, reveals how emerging technologies, such as augmented reality and wearable sensors, are transforming PD patient care.
• Circular RNAs and Exosome: A Potential Candidate for Parkinson’s Earlier Diagnosis and Therapy: Dr. Xianjun Dong, associate professor at Yale University, explores how innovative computational methods are offering new insights into neurological diseases like PD.

Through its nationwide network of Chapters and Information & Referral Centers, along with an extensive array of virtual resources and programming, APDA helps people along every step of their PD journey. By continuing to create resources in additional languages – including Mandarin/Simplified Chinese and Spanish to date – they can expand their reach, serving and supporting more and more people impacted by PD.

For more information about APDA programs, services, support, and PD research, visit www.apdaparkinson.org, call 800-223-2732, or email apda@apdaparkinson.org. For those seeking support in Mandarin, please send an email and a Mandarin speaking team member will get in touch.

About the American Parkinson Disease Association:

The American Parkinson Disease Association (APDA) is a nationwide grassroots network dedicated to fighting Parkinson’s disease (PD) and works tirelessly to assist the more than one million people with PD in the United States live life to the fullest in the face of this chronic, neurological disorder. Founded in 1961, APDA has raised and invested more than $282 million to provide outstanding patient services and educational programs, elevate public awareness about the disease, and support research designed to unlock the mysteries of PD and end this disease. To join us in the fight against Parkinson’s disease and to learn more about the support APDA provides nationally through our network of Chapters and Information & Referral (I&R) Centers, as well as our national Research Program and Centers for Advanced Research, please visit us at www.apdaparkinson.org.

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Using single nucleus RNA-sequencing, the project established a comprehensive striatal transcriptional profile during development of levodopa induced dyskinesias (LID). The profiles differed immediately after levodopa stimulation vs after repeated stimulation. In addition, she discovered that inhibition of Inhba, an activin subunit of the TGF-ß superfamily, impaired LID development, suggesting that activin signaling may play an essential role in LID.  

Understanding how and why LIDs develop are necessary steps to developing treatments for this troublesome medication side effect. APDA is proud to sponsor this research which brings hope to our PD community!  

Please visit the Research section of our website to learn more about the exciting work that we fund. 

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Cognitive challenges are a very common non-motor symptom of Parkinson’s disease (PD). When the cognitive challenges are severe enough to interfere with daily activity, they are known as Parkinson’s disease dementia (PDD). You may have heard of another condition called Dementia with Lewy Bodies (DLB). Although they are two different diagnoses, there is a fair amount of similarity between these two conditions. There may even be confusion or conflicting opinions among the neurologists you have seen as to whether you or your loved one has PDD or DLB. This understandably can cause great confusion and frustration. In this article, we will explain these conditions and try to provide some clarity.

Useful Definitions

Contributing to the confusion between these different conditions and terminology is that you may find that different sources give different definitions!

To help you as we go through our explanation below, we’ve compiled a short glossary you can refer to as you read this post:

• Dementia – a loss of cognitive function significant enough to interfere with daily activities.
• Alpha-synuclein – a protein normally found in the brain that forms abnormal clumps in Parkinson’s disease and other related disorders.
• Lewy body – an abnormal aggregation or clumping of alpha-synuclein, which can be present in the brain in a range of neurologic diseases including Parkinson’s disease and other related disorders.
• Parkinson’s disease (PD) – a degenerative neurologic disease marked by a constellation of movement and non-movement symptoms and associated with the presence of Lewy bodies in the brain. This term does not address specifically whether dementia is among the symptoms.
• Parkinson’s disease dementia (PDD) – dementia that has developed in someone with established PD. Dementia develops later in the course of the disease.
• Dementia with Lewy Bodies (DLB)– a degenerative neurologic disease marked by a constellation of movement and non-movement symptoms, including dementia, and associated with the presence of Lewy bodies in the brain. In this disease, dementia develops early in the course of the disease.
• Lewy Body Dementia (LBD) – an umbrella term which encompasses DLB and PDD.

“Location, location, location”

Because different parts of the brain control different functions, the same lesion in one part of the brain will cause one set of symptoms, and in another part of the brain, it will cause a different set of symptoms.

Alpha-synuclein Buildup

In PD, PDD, and DLB, the protein alpha-synuclein abnormally accumulates in the brain in aggregates, or clumps, called Lewy bodies.

The location of those clumps makes a difference:

• When Lewy bodies are present in the brainstem, body functions that are controlled by the brainstem will be affected, causing symptoms such as constipation, depression and sleep disorders. Other important symptoms of Lewy body disorders include wide fluctuations in blood pressure, poor temperature control and bowel and bladder dysfunction.
• When Lewy bodies affect the substantia nigra, located in the midbrain portion of the brainstem, hallmark motor symptoms will emerge including resting tremor, slowness and stiffness.
• Lewy bodies can also affect areas beyond the brainstem, including the cortex or the ‘thinking part’ of the brain. When this occurs, cognitive symptoms become apparent. Patients may experience difficulty with executive function (planning, ordering, multi-tasking), visuo-spatial function (navigating, constructing) and memory. A variety of other symptoms can be prominent including visual hallucinations, fluctuating levels of alertness, apathy, agitation, anxiety, and delusions (believing something that isn’t true – e.g. that someone is stealing from the patient or that the patient is being watched by the CIA).

Symptoms of Parkinson’s Disease Dementia and Dementia with Lewy Bodies

In both PDD and DLB, symptoms caused by Lewy bodies in the lower brainstem (e.g. constipation, depression, sleep disorders), midbrain (e.g. resting tremor, slowness, stiffness) and cortex (e.g. cognitive difficulties, hallucinations,) can all occur.

Differences between Parkinson’s Disease Dementia and Dementia with Lewy Bodies?

Technically, the difference between these two conditions lies in how quickly the cognitive difficulties and hallucinations develop in relation to the movement issues. In DLB, the cognitive difficulties and hallucinations develop much sooner in the disease course than in PDD, sometimes even prior to the movement difficulties.

It is important to note that there are other common types of dementia that are caused by the abnormal accumulations of other proteins. Alzheimer’s disease (AD) for example, does not show Lewy bodies but rather beta-amyloid plaques and tau tangles. APDA had an important conversation with the Alzheimer’s Association about some key features of Alzheimer’s disease and how AD and PD are related.

Is there a biomarker that can distinguish between PDD and DLB?

A biomarker is a measurable characteristic in the body which indicates that disease is present. The biomarker can be a lab test, an imaging test or a clinical test.

There has been a lot of talk recently about biomarkers for Parkinson’s disease and related disorders and these are:

• The DaTscan is an imaging test which measures the loss of dopamine nerve endings in a part of the brain called the striatum.
• The Syn-One test detects the phosphorylated form of alpha-synuclein in a set of skin biopsies that are taken from the neck, thigh, and back of the legs as a way of diagnosing disease.  
• The Syn-Tap test detects abnormal alpha-synuclein in cerebral spinal fluid.

However, because both DLB and PDD are characterized by abnormal accumulations of alpha-synuclein and loss of dopamine nerve endings, each of these biomarkers are abnormal in both PDD and DLB and current tests are not able to distinguish between the two.   

Treatments for Parkinson’s Disease Dementia and Dementia with Lewy Bodies

Treatments for DLB are similar to those for PDD and are aimed at symptom control. The motor symptoms of slowness, stiffness and walking difficulties can be treated with levodopa. However, levodopa can cause or exacerbate hallucinations, making it difficult to use it as a treatment for patients who have or are at risk of hallucinating. Sometimes, clinicians will need to treat the hallucinations more aggressively for a patient to tolerate levodopa given to help the motor symptoms. On the flipside, anti-psychotic medications to control hallucinations can worsen motor symptoms, so treating all the symptoms of PDD or DLB simultaneously can be a tricky balancing act.

Anti-psychotics

Most of the available anti-psychotics are always avoided in both the DLB and PDD population because they block dopamine receptors and can cause significant motor dysfunction. However, two anti-psychotic medications, quetiapine and clozapine, are sometimes used in PDD and DLB patients as they have less of an ability to worsen motor symptoms. However, data for the use of quetiapine in these disorders is limited and clozapine requires the patient to undergo frequent blood draws to monitor blood counts. A newer medication, pimavanserin, has a different mechanism of action, and does not block the dopamine system but rather the serotonin system, and therefore does not increase motor symptoms.  It was approved by the FDA to treat PD psychosis, although the overlap between PDD and DLB may make it reasonable to try pimavanserin in DLB as well.

Medications for cognition

Cognitive symptoms in DLB can be treated with the same medications developed for other dementias. These include medications such as donepezil and rivastigmine. Memantine is sometimes used as well.

DLB gained more visibility in the press when Robin Williams, the beloved comedian, died in 2014 with this condition. At APDA, we strive to further our understanding of Lewy body disorders through our research funding. Check out the research being done by Dr. Laura Volpicelli who is studying Lewy body formation in the amygdala and changes which may contribute to the cognitive and behavioral dysfunction in PD, and Dr. William Zieger, who is studying how alpha-synuclein causes problems with thinking and memory by using advanced microscopes to directly measure activity in the thinking areas of the brain.

Tips & Takeaways

• Differentiating between the different cognitive conditions associated with PD can be challenging.  
• Focus less on the label that has been attached to your condition and seek to maximize both your physical and mental health.
• This means consulting with your physician to improve your medication regimen to treat all aspects of your disease – including motor symptoms, cognitive symptoms, and hallucinations.
• Always be open and honest with your doctor about all of the symptoms you may be experiencing so they can create the best treatment plan for you.
• This also means that you must increase your level of physical, mental, and social activities to keep your brain and body functioning at their best.

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Loss of neurons in the brain that use dopamine to communicate is one of the hallmark features of Parkinson’s disease (PD), causing slowness, stiffness, tremor, and balance problems. Replacing the brain’s dopamine is therefore one of the key treatment strategies to help improve the motor symptoms of PD. Dopamine itself does not cross the blood-brain barrier and therefore can’t be used to treat PD. Instead, levodopa, a precursor of dopamine, which does cross the blood-brain barrier is used. If levodopa is ingested by itself however, it breaks down in the bloodstream before it crosses into the brain, so levodopa is typically ingested with another medication that stops it from breaking down. In the US, the combination of carbidopa/levodopa is used. When levodopa is taken with carbidopa, much lower doses of levodopa can be consumed and side effects such as nausea are minimized. Carbidopa/levodopa is the mainstay of treatment for PD and is the most effective medication available for PD. APDA research funding played a role in the discovery of levodopa for PD treatment, when we funded the work of Dr. George C. Cotzias back in the 1960s.

Despite its common and widespread use as a treatment for PD, our readers often have questions about carbidopa/levodopa therapy. This week I will address some of these common questions that have been sent to us by readers like you. (If you have questions or a blog topic to suggest, let us know!)

General Questions on Carbidopa/Levodopa

Q: Are there any negatives to consider if I want to postpone starting carbidopa/levodopa? The only symptom that I currently notice is tremor which affects my non-dominant hand and does not affect my daily functioning. I have no problems with my walking or balance, and I exercise every day.

A: In general, there is no downside to postponing levodopa to treat a tremor that is not affecting function. However, there may be subtle other symptoms that are being caused by PD that you are not as aware of. For example, it could be causing you to move slower than you would have. It may therefore be affecting your ability to exercise effectively up to your maximal capabilities. Because exercise may be neuroprotective in PD, if you are not able to exercise maximally when untreated, then you should consider starting medication for that reason.

Q: Does carbidopa/levodopa treat Parkinson’s progression?

A: Carbidopa/levodopa unfortunately does not change the progression of PD as far as we are aware, it just treats the symptoms. It is best at treating the slowness and stiffness of PD, but in many cases, treats the tremor as well.

Q: Does carbidopa/levodopa treat the tremor associated with Parkinson’s?

A: The answer is, sometimes. In many people, carbidopa/levodopa is very effective in controlling the tremor of PD. Yet for some people, carbidopa/levodopa does not seem to help the tremor much. Because tremor is present at rest and often goes away when the person is using the limb, a tremor can be more of a nuisance than a source of disability. For this reason, many movement disorders specialists will focus on whether the carbidopa/levodopa is helping the symptoms that do cause the disability, namely stiffness and slowness. It should also be noted, that for people whose tremor does not improve with medication, deep brain stimulation (DBS) can be considered as a treatment option.

Q: There are so many different versions of carbidopa/levodopa. Can you explain the differences?

A: There are indeed many formulations of carbidopa/levodopa available. This is very beneficial because it gives doctors many treatment options as they try to find the best formulation for each particular patient. Below are the brand names of the different carbidopa/levodopa options available:

• Sinemet – immediate release, the original formulation
• Sinemet CR – a formulation designed to be controlled release (CR) and last longer than a dose of Sinemet
• Stalevo – a combination medication of carbidopa/levodopa and entacapone, designed to last longer than carbidopa/levodopa alone
• Rytary – a formulation designed to be released more slowly from the stomach than regular Sinemet
• Duopa – a gel that is continuously pumped into the small intestine during waking hours
• Parcopa – a formulation that dissolves in the mouth. Although it is absorbed in the gut, the fact that it does not have to be broken down in the stomach means that onset of action of the medication is somewhat quicker than regular Sinemet
• Inbrija – an inhalation formulation (containing only levodopa) designed for quicker onset of action, to be used as a rescue dose if a scheduled dose is not effective enough

Learn more about Parkinson’s medications

Side Effects of Taking Carbidopa/Levodopa

Q: I am newly diagnosed with Parkinson’s disease and just started on carbidopa/levodopa. However, I feel that the medication is making me feel worse than my original symptoms. Can carbidopa/levodopa make PD worse?

A: Carbidopa/levodopa can definitively have an array of side effects such as nausea, fatigue, and dizziness. Your neurologist will try to find a dose that helps your PD symptoms, but does not cause side effects. Carbidopa/levodopa is probably not making your PD worse per se, but it sounds like overall, you are feeling worse on this dose than you did on no medication. You should discuss this problem with your neurologist who may consider changing your medication formulation or dosage.

Q: My husband has had PD for about 10 years. Lately he has been having significant body, arm, and finger movements after a dose of levodopa which improve just before the next dose. Is there any treatment for these abnormal movements?

A: It sounds like these movements may be levodopa-induced dyskinesias, a side effect of the levodopa, which causes extraneous, dance-like movements. The first question to ask is: are the movements bothering your husband or causing him to be more imbalanced? If he is not bothered by the movements and they are not interfering with his function, then it would not be wrong to leave his carbidopa/levodopa dose as is. If he is bothered by the movements, then his neurologist may consider lowering his carbidopa/levodopa, but only if he can tolerate them being lowered. He may need his current dose to achieve mobility. If his carbidopa/levodopa can’t be lowered and dyskinesias are bothersome, there are two medications that can be tried to treat levodopa-induced dyskinesias – amantadine and amantadine CR. Your husband’s neurologist may consider starting one of these medications to help control the movements.

Q: I was advised to take my carbidopa/levodopa at least 30 minutes after a meal. However, this caused a lot of nausea and stomach upset for me, so I now take the medication with meals which is much better for me. Is this OK to do?

A: There is no problem with taking carbidopa/levodopa with meals except for possibly reduced absorption – usually only in the presence of dietary protein and even this is only in a subset of patients. If you find that the medication works well for you when you take it with food, then you can continue doing what you are doing. It is always wise to talk to your doctor about any issues you’re having with your medication and discuss any potential changes in the dosing or timing.

Q: I noticed that I have increased trouble with my symptoms when I eat a meal containing protein. How do I adjust my diet to accommodate this?

A: Dietary protein can interfere with carbidopa/levodopa absorption in some people. This is known as the “protein effect.” The two ways to adjust your diet is to:

• Ingest your daily protein at the end of the day, so that you do not have the protein effect during your active time
• Divide your protein evenly throughout the day – that way, the medication absorption should theoretically be similar throughout the day. This begs the question of how to do that – how to estimate how much protein is in each food that you want to eat in order to spread the protein out evenly. For this, I refer you to one of the APDA webinars discussing nutritional issues related to PD, including the protein effect and how to estimate the protein in different foods. Nutrition issues are covered in the second half of the webinar.

Carbidopa/Levodopa Dosage

Q: I am on carbidopa/levodopa 25/100. What do the numbers 25 and 100 mean?

A: You are taking a combination pill of carbidopa 25 mg and levodopa 100 mg. Without the carbidopa, the levodopa would be broken down in the body before it got a chance to make it into the brain. The carbidopa acts to inhibit the enzyme that breaks down levodopa. There are various formulations of carbidopa/levodopa and your doctor will prescribe the dosage and formulation that is best suited to your particular situation.

Q: What is the maximum dose of carbidopa/levodopa that can be used for PD?

A: The maximum dosage for a particular person is usually the dose at which side effects interfere with the benefits of the medication. Different people therefore will have different maximum dosages tolerated. Some people tolerate and benefit from very large doses of levodopa – greater than 2,000 mg or even higher.

In order to determine the right dose for you (which means how much medication to take in one dose, how many doses to take a day and how much time should be between each dose), you and your physician should discuss:

• what (if any) positive effects that carbidopa/levodopa has on your symptoms
• how long it takes for a dose to take effect
• how long the effects of a dose last for you
• the side effects that the medication is causing (which includes but is not limited to: nausea, low blood pressure, hallucinations, fatigue, and carbidopa/levodopa-induced dyskinesias.) Remember, each potential side effect only occurs in a subset of people on the medication

Based on the answers to these questions, your dose can be adjusted.

Q: For how many years can levodopa be effective?

A: Levodopa is typically effective for as long as a person has PD. However, over time, people with PD tend to need to take more levodopa. The reason for this is that as progression of PD takes place, there are fewer dopaminergic neurons in the brain that can produce their own dopamine. A person with PD tends to need more medication containing dopamine over time to compensate for these changes. Therefore, needing more carbidopa/levodopa over time does not mean that the medication is no longer working, it means that the disease is changing.

In addition, as PD progresses, a person may start to develop more symptoms that are not responsive to carbidopa/levodopa. Carbidopa/levodopa best treats the motor symptoms of PD – mostly slowness, stiffness, and tremor. Some motor symptoms, such as balance problems, do not respond as well to carbidopa/levodopa. Non-motor symptoms including fatigue, depression, sleep problems, cognitive difficulties, variations in blood pressure, urinary problems, and constipation, also do not respond to carbidopa/levodopa and may cause more disability over time than motor problems. The perception may be that over time, carbidopa/levodopa is not effective, when in fact new symptoms developed that carbidopa/levodopa can’t treat.

Q: I have had PD for about 10 years. Over the years, the length of time that a particular dose of carbidopa/levodopa works has gotten shorter. One dose used to last five hours, but recently, it lasts closer to three hours. In addition, sometimes my dose does not work at all. What is going on?

A: This shifting response to medication is known as motor fluctuations and can be a very significant challenge in the treatment of PD as the disease progresses. There are many strategies that your doctor can use to try to lengthen a dose of medication and even out your response to medication throughout the day. These strategies include changing the timing or strength of a dose, using different formulations of carbidopa/levodopa, or adding other medications. All of these strategies are summarized in an APDA publication on enhancing communication about OFF periods.

Q: How long does it take for a dose of carbidopa/levodopa to take effect?

A: This is variable between people, but typically it takes 30 minutes to one hour for a dose to start working. For some people, the amount of time that it takes for a dose to work is variable from dose to dose and they may wait a short period for some doses and a very long period for others. At times, there can even be dose failures when a dose never kicks in.

Q: How should you space your doses of carbidopa/levodopa?

A: For carbidopa/levodopa immediate release (Sinemet), this typically depends on how advanced the disease state is. For those in early stages, one dose can last six hours or even more. As the disease advances, this amount of time tends to get shorter and some people require medication every two hours.

There are other formulations of carbidopa/levodopa, for example carbidopa/levodopa extended release capsules (Rytary). This formulation is meant to last longer than the immediate release version. Again, the amount of time the dose lasts varies from person to person.

Q: What happens if you miss a dose of carbidopa/levodopa?

A: This depends on the person. For some people, a missed dose is not a problem and when the person remembers to take the dose, he/she can resume without an issue. For others, a missed dose will cause an OFF period in which the motor symptoms of PD return. The person should therefore take the dose as soon as he/she remembers so that the PD symptoms resolve.

Q: What happens if you take levodopa and you don’t have Parkinson’s?

A: There should be no adverse effects if you take levodopa and don’t have PD.

Tips and Takeaways

• Carbidopa/levodopa remains the most effective medication for treatment of the motor symptoms of PD, yet despite its widespread use, people have many questions. Never hesitate to ask your doctor about your medication.
• Be sure to mention all your symptoms to your neurologist as some may be side effects of carbidopa/levodopa. Adjusting medication dosage and timing can help reduce many side effects.
• There are many different formulations of carbidopa/levodopa. Your doctor will work with you to select the best one for your symptoms.

Adjusting your diet may help with improved

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Abnormally aggregated alpha-synuclein is a main component of the Lewy body which is the pathologic hallmark of Parkinson’s disease (PD). However, alpha-synuclein is normally present in the brain and deciphering its various and complex roles is a key research strategy to understanding what goes wrong in PD.

One possible function of alpha-synuclein is in the regulation of synaptic vesicles, the cell’s transport containers that move signaling chemicals from one neuron to the next. This process allows for nerves to communicate across the synapse, the space that exists between neurons.

To investigate this potential key function, Dr. Ho used a system that he developed for measuring the recycling and release of signaling chemicals from synaptic vesicles. He started with iPSCs, induced pluripotent stem cells, from several sources, including those that were derived from a skin biopsy of a person with PD who harbored a genetic mutation that caused too much alpha-synuclein to be produced. Dr. Ho then differentiated the iPSCs into cortical nerve cells.

Dr. Ho utilized these nerve cells in his novel system to see if they were able to recycle synaptic vesicles and release signaling chemicals as efficiently as nerve cells without the overabundance of alpha-synuclein. He showed that too much alpha-synuclein reduced synaptic vesicle cycling, impacting the interaction between nerves. This impaired communication could be a core feature of PD pathology and finding ways to normalize this could play a role in treatment of PD.

APDA is thrilled to be funding Dr. Ho’s work.

Dr. Ho said “I am tremendously grateful for the support of APDA, which made this work possible. Our findings shed light on how alpha-synuclein, a critical protein in PD, directly affects how brain cells communicate. This is an important step in understanding how different PD symptoms arise at a cellular level, in particular cognitive dysfunction. In supporting this and other research, the APDA is contributing meaningfully to our collective efforts in finding new treatments to slow the progression of PD.”

Please visit the Research section of our website to learn more about the exciting work that we fund.

The post How alpha-synuclein affects brain cell communication: APDA-funded research published appeared first on American Parkinson Disease Association.

Dr. Mahlon DeLong was a pioneer in the Parkinson’s disease (PD) field and a dear friend and longtime partner of the American Parkinson Disease Association (APDA). He sadly passed away on May 17, 2024.

In tribute to Dr. DeLong, we reflect on the remarkable life and career of a man who profoundly impacted both neurology and the lives of those fortunate enough to know him. We honor his professional achievements and the kindness and friendship he shared with us.

Dr. DeLong’s illustrious career was marked by groundbreaking contributions to understanding and treating Parkinson’s disease, dystonia, tremor, and other neurological movement disorders. His pioneering research into the basal ganglia helped transform neurology, providing critical insights into PD and other movement disorders. His work has fundamentally changed the approach to these conditions, improving the lives of countless patients worldwide.

One of Dr. DeLong’s most notable accomplishments was his research of the basal ganglia that contributed to the development of deep brain stimulation (DBS) as a therapeutic technique. This innovative approach, involving the implantation of electrodes to regulate abnormal brain activity, has offered new hope to individuals suffering from PD. Recognized with numerous prestigious awards, including the Lasker-DeBakey Clinical Medical Research Award and the Breakthrough Prize in Life Sciences in 2014, Dr. DeLong’s contributions to DBS underscore the global significance of his work.

Dr. DeLong was a longtime member of APDA’s Scientific Advisory Board and a steadfast champion of APDA’s mission. As a neurologist and professor at Emory University, he was also a collaborative partner and friend of APDA’s Georgia Chapter. We are tremendously grateful for his partnership and support over the years. His unwavering dedication to the Parkinson’s disease community made him an icon in the field, significantly advancing understanding and treatment.

As we honor Dr. DeLong, we celebrate a life filled with extraordinary accomplishments and profound kindness. His legacy will continue to inspire and guide so many. We are deeply grateful for the time we shared with him and the indelible imprint he leaves on us, the world of neurology, and the Parkinson’s disease community. We extend our deepest sympathies to his friends, family, and all who were fortunate enough to know him.

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This week, the Senate passed the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act! Now that the bill has passed through both houses of Congress, it heads to the President’s desk where it will be signed into law! 

Here is some history about the National Plan:

In 2022, the U.S. House of Representatives introduced the National Plan to End Parkinson’s Act – the first-ever legislation in Congress focusing on curing and preventing Parkinson’s disease (PD) and ensuring quality care for those living with the disease. Since then, it has worked its way through both houses of Congress, with the help of many advocates in the PD community.

This legislation will create an advisory council composed of representatives from federal agencies already working on Parkinson’s, people with PD, caregivers, health care providers, and representatives from non-profit organizations with experience in Parkinson’s research and care. The advisory council will meet quarterly to create a strategic plan to end PD and be responsible for reporting to Congress every two years on its progress and impact.

The National Parkinson’s disease plan will address ways to:

• Increase federal research funding to help prevent and cure PD
• Develop a more streamlined approval process for treatments for PD
• Create new and improved models for patient care, with a specific interest in decreasing health disparities in PD treatment
• Develop standards and measures to prevent PD
• Coordinate a national plan to track cases of PD
• Improve the early diagnosis of PD
• Increase public engagement and public awareness of the disease
• Decrease the use of toxins that may contribute to PD risk
• (and more)

Once the President signs the bill into law, the real work will begin for the Federal government, along with all interested parties, to flesh out the details of the plan.

APDA will eagerly support this effort and will keep you posted about the next steps in this process as the advisory council is formed and begins its critical work.

The post The Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act has passed through both Houses of Congress! appeared first on American Parkinson Disease Association.

Many people with Parkinson’s disease (PD) experience variation in their motor symptoms (e.g. tremor, stiffness, slowness, trouble walking, balance difficulties) throughout the day and from one day and the next. This variability is often related to medication dosing, and you and your doctor may focus on adjusting the types of medications that you take as well as the timing and amounts that you take to improve your symptoms throughout the day. You can read more about the possible medication adjustments to improve the amount of time that your medications work, also referred to as ON time.

In addition to medications, however, there are a variety of other factors that can affect how you feel on a particular day.

Additional Factors That May Worsen Parkinson’s Disease Motor Symptoms

Stress and anxiety

When faced with stressful life circumstances, a person can experience a worsening of their PD symptoms. A very common manifestation of this phenomenon is an increase in tremor when anxious or nervous. For example, your tremor might be very well controlled normally, but then emerges during a doctor’s visit, when you are more nervous. Some people report that the increase in tremor “gives away” to other people that they are nervous or anxious.

In addition to tremor, all the motor symptoms of PD, including slowness, stiffness, and balance problems, can worsen or become less responsive to medication when a person is stressed or anxious.

The solution in these situations is not to increase PD medications but rather to utilize relaxation techniques such as meditation or deep breathing exercises. You may need to seek the help of a therapist to better manage your stress and anxiety. If these steps are not sufficient, talk with your doctor about potentially trying a prescription medication for these symptoms.

Depression

Depression is a very common non-motor symptom of PD with approximately 50% of people with PD experiencing depression. Depression can drastically reduce quality of life in many ways, including by worsening the motor symptoms of PD.

Depression and PD symptoms may include:

• Persistent sadness
• Loss of interest in formerly pleasurable activities
• Changes in appetite
• Feelings of helplessness or hopelessness

Depression may respond well to cognitive behavioral therapy as well as medications for depression, so it is very important to discuss this symptom with your doctor so it can be treated.

Learn more about managing depression with Unlocking Strength Within

Poor sleep

A poor night’s sleep is often linked to worsening of PD symptoms the next day. Addressing sleep issues is therefore crucial for managing overall PD symptomatology effectively.

There are a variety of sleep disorders that are common in PD including:

• Insomnia – inability to fall asleep at the start of the night or return to sleep if you wake up in the middle of the night
• Sleep apnea – a condition in which you have pauses in breathing during the night leading to lowering oxygenation levels and frequent awakening
• Sleep fragmentation – a disruption of the normal sleep pattern leading to frequent awakening during the night
• Vivid dreams or nightmares, as well as nighttime hallucinations
• Restless leg syndrome – in which irritating sensations in the limbs before sleep are relieved only by moving the limbs and can interfere with falling asleep
• Nighttime urinary frequency – frequent awakening during the night to urinate
• Nighttime anxiety and confusion
• Nighttime OFF periods which make it difficult to maneuver comfortably in bed

If you find that your PD symptoms are worse after a poor night’s sleep, the strategy should be to discover the cause of poor sleep and address it. For example, if sleep apnea is the cause of poor sleep, then using a continuous positive airway pressure (CPAP) machine, that pushes air into the lungs to maintain oxygenation during the night, may be the solution. Or if nighttime urinary frequency is the cause of your sleep problems, talk to your doctor about potentially initiating a medication to help with this symptom.

Check out a past episode of Dr. Gilbert Hosts on Parkinson’s disease and sleep issues

Dehydration

As people age, they may find that their sense of thirst is blunted. This means that the normal cues that remind you to drink are not as apparent, putting you at risk for dehydration. Dehydration can cause a slew of negative consequences including low blood pressure and constipation and can also worsen your PD symptoms. Avoiding dehydration requires you to drink throughout the day and becomes especially important in the summer months.

Remember that some foods such as watermelon, strawberries, lettuce, and tomatoes (among others) have a very high water content and can be used in addition to liquids to maintain hydration.

Low blood pressure

As mentioned above, being dehydrated will lower your blood pressure and can exacerbate orthostatic hypotension, a common non-motor symptom of PD, in which episodes of low blood pressure occur with changes in head position. Low blood pressure can lead to dizziness and worsening of PD symptoms. If it is suspected, have someone take your blood pressure while you are sitting and standing to document a drop upon moving from one position to another. An array of treatments for orthostatic hypotension ranging from lifestyle modifications to prescription medications can help this situation.

Malnutrition

A person with PD is at risk for inadequate food intake for a variety of reasons including impaired swallowing, reduced ability to prepare meals, decreased appetite, depression, apathy, or poor smell/taste. Poor nutrition can lead to vitamin deficiencies, increased frailty and increased fatigue – which all can worsen PD symptoms. If you don’t think that you are getting adequate nutrition, or if you have noticed weight loss, ask your neurologist for a referral to a registered dietitian for an evaluation, as there are many things you can do to improve your nutritional intake.

Geography, high altitude, and weather

Many people report that the environment in which they find themselves can influence their PD symptoms. Poor temperature regulation can be a non-motor symptom of PD. Therefore, being in an environment that is too hot or too cold can be uncomfortable and can worsen PD symptoms. In addition, changes in altitude are also reported by some people with PD to affect their symptoms. There are lifestyle modifications and other therapies that can help improve your symptoms and comfort level so be sure to talk with your doctor.  

Intercurrent illness

Although PD symptoms can fluctuate from day to day and throughout the day, if there is a drastic and sudden change in symptoms, the culprit is often an intercurrent infection. A urinary tract infection or respiratory infection is often responsible and may need to be treated with antibiotics.

Other medical problems

A variety of other medical problems can worsen PD symptoms, so make sure to routinely visit your primary care physician who reviews your general health.

Examples of medical problems that may impact PD symptoms include:

• Abnormal thyroid function – this can be easily checked with a blood test and corrected, often with a prescription of synthetic thyroid hormone.
• Abnormal Vitamin B levels – these levels can also be checked with blood tests and supplemented orally if necessary.

Tips and takeaways

• Medication adjustments can help you maintain good PD symptom control throughout the day.
• However, there are many other factors that can lead to a variability in PD symptoms during the day and from one day to the next.
• These factors include stress, anxiety, depression, poor sleep, dehydration, poor nutrition, low blood. pressure, intercurrent infections or medical illnesses, geography, altitude, and weather.
• Many of these issues can be successfully treated by your doctor, so be sure to discuss your changing PD symptoms with him/her.

The post What Worsens Parkinson’s Disease’s Motor Symptoms? appeared first on American Parkinson Disease Association.