MJFF Offering Comprehensive Guide for Newly Diagnosed Patients

MJFF guide

The Michael J. Fox Foundation (MJFF) is offering a guide to help people newly diagnosed with Parkinson’s navigate the early days of their disease, and better prepare for the future.

Called “If I Knew Then What I Know Now: The Michael J. Fox Foundation Patient Council’s Guide for People Newly Diagnosed with Parkinson’s,” the resource is meant to provide encouragement, insights, and practical strategies to those living with this disease.

This year alone, about 60,000 people in the U.S. are expected to be diagnosed with Parkinson’s. Compounding matters, many of those diagnoses will come during a global pandemic.

The free 32-page guide was written by five members of MJFF’s Patient Council, which represents the patient perspective and works to educate the community.

Rachel Dolhun, MD, MJFF’s vice president of medical communications and a movement disorder specialist, also contributes tips for managing life with Parkinson’s. Among topics covered are disease information and specialists, building a support system, diet and exercise, and research participation.

“A Parkinson’s diagnosis brings many questions and concerns and a series of inevitable hurdles,” Soania Mathur, MD, guide contributor and Patient Council co-chair, said in a press release. “We may not have a choice in our diagnosis, but how we face those challenges is ours to determine.”

The guide comprises short, mostly first-person articles categorized into sections. A section called “I’ve Got What?” covers the diagnostic process, second opinions, the Parkinson’s journey, inheritance, and causes of Parkinson’s disease.

Another section, “Managing Emotions in the First Days,” has essays about disease acceptance, the relationship between symptoms and stress, and reasons for hope.

“Coming to terms with my Parkinson’s was not something that happened overnight,” one contributor  wrote. “I had to tell myself many times that my diagnosis was here, it was happening now, and it was unavoidable. And that I needed to start planning for what would come next.”

Added Michael J. Fox, the actor who founded MJFF after being diagnosed with Parkinson’s in 1991 at age 29: “My first thought was, ‘What the hell happened to me? What am I going to do?’ That took time to work through, but I found out that if I could accept what my situation was, and be honest about it, I could move forward.

“And my happiness grows in direct proportion to my acceptance,” Fox said.

In “Taking Control of Parkinson’s Disease,” authors discuss the best sources for advice, symptom management, early medication and treatment, caregiving, and making the most of doctor appointments. There is also an article about clinical trial participation, and a column by Bill Rasmussen, a Patient Council member and founder of the U.S. sports channel ESPN, who was diagnosed in 2014.

The guide also includes a question-and-answer section, titled “How and When Will I Know I’m Ready to Share My Diagnosis?” Another section addresses early onset PD, generally defined as a Parkinson’s diagnosis before age 50.

The publication also provides a listing of MJFF resources, covering many aspects of life with the neurodegenerative disorder.

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Subtle Alterations in Postural Behavior May Help Diagnose Parkinson’s Earlier

Postural behavior

People with Parkinson’s have postural adjustments even at early stages of the disease when clinical symptoms of postural instability are not evident and despite the use of antiparkinsonian medications, a recent study shows.

Researchers believe these findings suggest that postural behavior may be used as an early indicator to diagnose the disease.

The study, “Postural Behavior in Medicated Parkinson Disease Patients: A Preliminary Study Searching for Indicators to Track Progress,” was published in the Journal of Central Nervous System Disease.

Parkinson’s disease usually is diagnosed based on the presence of classic  motor symptoms. But other signs of the disease are present sometimes years before motor symptoms are evident, though still insufficient to make a definite diagnosis.

Identifying patients in this earlier phase would ensure they receive treatment early, before their disease progresses to more advanced stages and significantly affects daily activities.

Generally, Parkinson’s patients with early disease are classified as not having postural instability. But modern technologies are more sensitive to subtle impairments in balance, and potentially may identify changes in postural behavior that take place even in earlier stages of disease.

To clarify the presence of postural changes in early Parkinson’s disease, and whether these changes can be used to diagnose the disease before motor symptoms are evident, researchers at the Western Michigan University and collaborators at the Federal University of Piauí, Brazil, investigated two groups of Parkinson’s patients, and compared them to a group of healthy controls.

Participants included nine patients with early disease — defined as a Hoehn and Yahr Stage rating scale up to 2, which means their balance was not yet affected — and nine patients with mid- to advanced disease (a Hoehn and Yahr Stage of 2.5 or higher, whose balance was already compromised).

These patients were all taking antiparkisonian medication, allowing researchers to account for the effects of medication on balance, which the team believes is a clear limitation of prior studies that lacked a standardization on this parameter. Controls included nine healthy subjects matched by age, who had no history of sensory, muscular, or neurological disorder.

Participants were asked to perform two simple postural tasks: stand quietly on a force platform with arms crossed, with eyes open or closed. Each task took 120 seconds. During that time, the platform collected information regarding participants’ center of pressure, including body sway trajectory (how the center of pressure moved), sway amplitude (how far in each direction it went), sway velocity (how fast it moved), and sway jerkiness (how shakier body sway was).

The team found that most measures were similar across patients and controls when they did the test with their eyes open. But Parkinson’s patients already showed greater sway velocity and jerkiness compared to controls in this task. Late-stage patients also had more overall sway movement and greater sway amplitude.

When the task was done with eyes closed, patients also had higher sway jerkiness — though sway was only laterally shakier — compared to controls, but not higher sway velocity. Those with advanced disease also had greater sway amplitude.

No significant differences were seen between groups of Parkinson’s patients in either task. Also, while controls and early-stage patients swayed more, faster, and shakier when they stood still with their eyes closed, no differences were seen in advanced patients with eyes open and closed.

The findings show that Parkinson’s patients have alterations in postural behavior starting in early stages of disease, and despite the use of dopaminergic medication. “This finding indicates that balance control is affected even before clinical signs surface,” the researchers wrote.

“Therefore, postural markers used in this study are [of] great importance to improve early diagnosis of postural instability in PD [Parkinson’s disease], record progress of balance control, and assess fall risk. They should also be implemented in clinical trials of pharmacotherapy and balance training protocols specific to populations diagnosed with PD,” they concluded.

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Fox Foundation Grant to Find Protein Biomarkers for Early Diagnosis


Erisyon, a biotechnology company specializing in the study of proteins, was awarded a grant by The Michael J. Fox Foundation (MJFF) to find and validate potential markers of Parkinson’s disease in its early stages.

The grant, reported to be worth $189,000, will go toward deploying single-molecule protein sequencing to detect and validate protein biomarkers that might inform an early diagnosis. The earlier a person is diagnosed, the sooner treatment can begin.

“Our single-molecule assay will help untangle the mysteries of using alpha-synuclein as a potential biomarker,” Talli Somekh, the company’s CEO, said in a press release. “This technology can help to identify the smaller aggregate proteins that cause Parkinson’s before they form large, insoluble particles in the brain.

“With the support of The Michael J. Fox Foundation, our study aims to quantify very accurately the biomarker for Parkinson’s at a much earlier stage of the disease,” Somekh added.

A Parkinson’s hallmark is the misfolding of the alpha-synuclein protein, which promotes its aggregation into clumps that are deadly to dopamine-producing nerve cells. These cells are responsible for releasing the neurotransmitter dopamine, which is critical for regulating brain cell activity and function.

Focused on personalized medicine and treatment discoveries through a better understanding of proteins, Erisyon aims to commercialize the first single-molecule protein sequencer to upend how disease is detected, treated, and monitored.

A 2018 study into the company’s proprietary new way of sequencing proteins showed the method was more sensitive than existing technology, identifying individual protein molecules instead of requiring millions of molecules at a time. The hope is that this technology — developed by researchers at the University of Texas at Austin — will make it easier to uncover diagnostic biomarkers for Parkinson’s and other diseases, and broaden understanding of how cells function.

Next-generation technology has made sequencing the entire genome of any living organism swift, affordable, and accurate, accelerating biological research. The new technology offers quick and comprehensive information about millions of proteins that play a role in disease and in the normal functioning of cells.

In many disorders, including Parkinson’s, cells produce proteins and other substances that act as unique biomarkers. Better detection of these biomarkers would help scientists understand what causes disorders such as Parkinson’s, allowing more accurate, earlier diagnoses. Molecular biomarkers are gauges that provide insights into a patients’ health, and are key indicators of disease progression and companion diagnostics.

The scientific standard for sequencing proteins is a tool called mass spectrometry, which can detect a protein if there are about a million copies of it. As such, it can be insufficiently sensitive for many applications. Mass spectrometry also it has what is called a low throughput, meaning it can detect only a few thousand distinct protein types in a single sample.

Erisyon reports that its technology, with its single-molecule sensitivity, can isolate and measure blood serum-based biomarkers whose concentrations are below the sensitivity of existing techniques. It also has a high-throughput, being able to measure at least one billion individual proteins in a single sample.

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The MJFF and ESPN Founder Bill Rasmussen Target Trial Participation

Bill Rasmussen and MJFF

In his new role as Michael J. Fox Foundation (MJFF) ambassador, sports channel ESPN founder Bill Rasmussen will focus on involving newly diagnosed Parkinson’s patients in clinical trials.

Diagnosed with Parkinson’s in 2014 at age 81, Rasmussen also will sit on the nonprofit organization’s 35-member Patient Council, which guides and counsels the MJFF on programming strategies.

Rasmussen’s overarching goal in this collaboration is to help speed a Parkinson’s cure. It’s a challenge he takes very seriously and he intends to bring the same determination and tenacity to this effort as he did when he conceived the creation of ESPN, the world’s first 24-hour sports television network that ushered in the era of round-the-clock broadcast coverage.

“Whether Parkinson’s related or not, the obstacles in my life won’t stop — and I won’t let them stop me,” Rasmussen said in a press release. “I make workarounds to address the disease and I accept it for  what it is. I still enjoy meeting new people. And I continue to be grateful that I can share my story. I hope my life story can help more people — even just one more person.”

With his signature upbeat attitude and commitment to staying active, Rasmussen hopes that by telling his story of Parkinson’s diagnosis and community engagement, he can encourage patients and families to help advance Parkinson’s study through clinical trial participation. He particularly hopes to involve the very newly diagnosed — those not yet on a Parkinson’s therapy — since they can help scientists track disease progression. He hopes to lead an effort to find, educate, encourage, and recruit new patients.

Clinical trials play a crucial role in the development of new and better therapies by evaluating the safety and effectiveness of candidate treatments. But trials need participants in order to move forward. Across all research, 85% of trials encounter delays and 30% never get underway, all because of volunteer shortages. Consequently, patients wait longer for new treatments.

“The first few months and years following a Parkinson’s diagnosis can be overwhelming,” said Rachel Dolhun, MD, the organization’s vice president of communications. “Few people think about participating in clinical trials during this time. But people in this fleeting window are in a unique position to contribute to research and help scientists capture the full continuum of Parkinson’s. We are thrilled to have Bill as an ally in sharing this story and helping increase the flow of critically needed newly diagnosed individuals into Parkinson’s research,” she said.

Rasmussen also is featured in the foundation’s resource guide for new patients, which includes stories on topics such as second opinions, the effect of stress, managing emotions, and early-onset Parkinson’s disease. In Rasmussen’s story, he talks about finally learning what his symptoms meant.

“My diagnosis was a relief,” he wrote. “Ultimately, I thought it was better to know my disease, to give it a name and to meet the challenge head on.”

Rasmussen was a guest panelist in a May 21 Foundation webinar on newly diagnosed patients. (Register here to listen on demand.) Rasmussen also will participate in the organization’s podcasts.

Rasmussen’s collaboration with the foundation is sponsored by ESPN.

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NeuroMotor Pen, Tool for Early Disease Diagnosis, Soon Widely Available

digital sensor diagnostic pen

Manus Neurodynamica, a medical technology company, has raised £750,000 in a financing round to support the rollout of NeuroMotor Pen, a digital pen with a patented sensor technology to help diagnose at early stages movement disorders like Parkinson’s disease.

The funding, worth about $950,000, will also be used to develop new technologies with clinical applications.

The NeuroMotor Pen combines sensor technologies linked with a software that can record and analyze limb and hand movements, Manus states in a press release. The pen is connected to a tablet on which patients do several handwriting and drawing tasks. Abnormalities in these movements are detected, allowing clinicians to access fine motor skills, and those abnormalities are then used as “digital biomarkers” of movement difficulties.

Its Edinburgh-based manufacturer describes NeuroMotor Pen as a non-invasive early detection and monitoring tool for Parkinson’s disease and other neurological diseases, both in the clinic and in clinical trials worldwide. Tasks required for evaluation can be performed in a person’s home.

According to the company’s website, the pen can help in decisions involving differential diagnosis, especially in distinguishing Parkinson’s from essential tremor, a neurological condition common to older adults that typically affects the hands. It also can be used to monitor disease severity in Parkinson’s patients.

The financing round was led by Par Equity, with the support from the Scottish Investment Bank, the investment arm of Scottish Enterprise, and Old College Capital, the venture fund of the University of Edinburgh.

“We are excited to be working with Par Equity and our other new shareholders to accelerate the commercialisation of our neuromotor assessment technology,” Rutger Zietsma, chief executive officer of Manus Neurodynamica, said in the release.

“From our very first meeting it was obvious that we and Par Equity shared a vision of the global potential for the product, not just in Parkinson’s disease but in many other clinical indications,” Zietsma added.

Manus has sold several systems to hospitals across the U.K and in the Netherlands. The company has also secured a contract to develop a version of NeuroMotor Pen to be used in surgeries and other primary care clinics.

“Manus Neurodynamica has enjoyed positive outcomes in clinical trials at home and internationally, and we are happy to provide continued support to the Company through the next stage of its growth plans,” said Kerry Sharp, director, Scottish Investment Bank.

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We Have the Right to Grieve Parkinson’s Disease

marriage, tasks, bucket lists, forgetfulness

Ashen faces stare forward, their lifeless eyes fixated on the pine box before them. Some weep, while others watch with blank expressions void of emotion. Both represent the grief that hangs heavy in the room.

Death does not hold the rights to grief. 

Some might say that grief comes from the passing of a soul from life here on Earth. Yet, other events merit grief as a legitimate emotion, not only in dying, but also in living. These might include a lifelong relationship coming to an end through betrayal, the loss of innocence, divorce, a chronic or terminal illness diagnosis, or longing for children while remaining childless. 

Bright cotton candy clouds, once displayed against a baby blue sky, have now faded into grays of every hue. The wind has taken to whistling as it slams a downpour of raindrops to the earth, mocking us with its song of fear. Nothing feels safe from the storms that seem to attack — not your joy, hope, faith, or courage. They are all tested in the wake of grief.

The doctor tells you, “You have Parkinson’s disease” (or another chronic or terminal illness). A million thoughts vie for space in your brain, and they tend to settle on fears about what could lie ahead. 

Thoughts and feelings are stirred up because of the anxiety we experience. It is normal to experience grief at times like this.

We can feel as if we’ve become like a puzzle waiting to be put back together, but we are learning. But we can never be put back together the way we once were, when all the pieces fit nicely and neatly. 

Has all the good disappeared because we now have Parkinson’s disease?

Your joy exists, but because you wear the Parkinson’s “mask,” others assume you are grumpy. Because of the mask, you look grumpy, and due to the suggestion, you begin to feel grumpy.

Hope seems elusive. You want to trust in something or someone greater than yourself, but grief leaves you unsure of what to believe. 

Can your faith hold up under the diagnosis of a debilitating, lifelong disease? Can you muster the courage and strength to go the distance with this monster? How do you get over grieving Parkinson’s?

Over versus through

Like grieving a death, with time, it gets easier to accept your new path in this life. I don’t believe one ever gets over the shock of a Parkinson’s diagnosis, but you can get through it. 

The 5 ‘we musts’

We must try to stop dwelling on the “what ifs”: What if this goes from bad to worse faster than they’re telling me? What if one morning I wake up only to discover I am no longer able to move? What if my spouse leaves me?

We must replace the “what ifs” with truth: This disease has no guarantee that it will progress quickly or slowly. We must learn to take one day at a time, remain thankful for that day, and make the most of it. 

We must not dwell on the thoughts that chain us to the fear and the darkness, allowing it to engulf our spirits. Instead, we must fill our minds with things that will encourage and inspire us. 

We must get up, get out, and do the things that bring us joy, even if we can only do it for five minutes at a time. We must start somewhere. If we don’t, we will give fear a foothold in relation to our joy and peace.

And when we are starting somewhere, we must find someone to walk the journey with us who will help us to endure to the end.

Misery loves company, some say. People who are feeling miserable draw comfort from others who are miserable. 

I say misery does love company, which is why we need the type of company that encourages and supports us, lifts us up, and stays by our side while we grieve, until finally we are able to see the blue in the sky once again. 


Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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When They Say Parkinson’s Is ‘All in Your Head’

marriage, tasks, bucket lists, forgetfulness

I sit at my desk in the window watching as cottonwood trees release their fluffy snowballs of spring. A car passes at a snail’s pace, yet fast enough to set this phenomenon into motion like a soft, harmless tornado dancing in circles. It reminds me how Winnie the Pooh is filled with fluff. Silly old bear.

You may have experienced the following not-so-hypothetical situation.

A civil conversation goes awry and becomes a heated discussion. You want to make someone understand what you experience every day, because your symptoms are real and not imagined. You have been to several doctors and all have come to the same diagnosis: You have Parkinson’s disease. 

Trying to teach or convince someone you have Parkinson’s has been challenging. Your symptoms didn’t present themselves the “traditional” way one would expect. Instead of dealing with tremors as one of your first symptoms, you began to feel confused. Instead of your arm not swinging at your side, your words became garbled, and you were becoming hard to understand.

You find communication difficult. You can’t always finish your sentences or complete a thought. You fear your brain is turning into … fluff.

It doesn’t seem to matter what you say, or how many times you try to defend yourself, including to some friends or family members. It doesn’t seem to matter that they are friends or family, either, as they can’t seem to understand you and have labeled your disability as being “all in your head.”

To a degree, they are right. It is all in your head. But what used to be all in your head is trickling away, a little bit of dopamine at a time. One little bit of normalcy at a time.

I have heard someone describe having fluff for brains as also having a screw or a wire loose, like someone who is not operating on all six cylinders. Having a loose wire can happen in Parkinson’s. I am living proof.

Several years ago, I had deep brain stimulation. After five years, my circuitry was faulty and they had to take out a broken wire and replace it. During the procedure, the old, broken wire was overlooked and left inside in error. My surgeon assured me there was no danger of leaving it, but if I wanted him to remove it he would. I opted to leave it.

“Something is wrong with your brain,” a friend once said to his spouse who had Parkinson’s. And he was partially right. And while he most likely won’t find a screw loose or that she has fluff for brains … a loose wire? Now that’s a different story.


Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Predictive Models Could Help Diagnose Early-stage Parkinson’s, Study Finds

predictive models

Predictive models can help diagnose Parkinson’s disease in early stages, and could be used to distinguish Parkinson’s from conditions that present similarly, a new study suggests. The findings indicate that losing the sense of smell is particularly significant for predicting Parkinson’s.

The study, “Non-motor Clinical and Biomarker Predictors Enable High Cross-Validated Accuracy Detection of Early PD but Lesser Cross-Validated Accuracy Detection of Scans Without Evidence of Dopaminergic Deficit,” was published in Frontiers in Neurology.

It is widely agreed that non-motor manifestations of Parkinson’s disease  typically predate the onset of motor symptoms that are more specifically characteristic of the disease. Identifying Parkinson’s in these very early stages,  which is necessary for starting treatment as soon as possible, is a continuous clinical challenge.

A particular problem in this regard is differentiating between Parkinson’s and SWEDD (scans without evidence of dopamine deficit). SWEDD is a disease category in which a person has symptoms that are indicative of Parkinson’s, but they don’t have the changes in dopamine activity in the brain that are characteristic of Parkinson’s. The researchers who authored the new study described SWEDD as “a [Parkinson’s disease] lookalike.”

In the new study, researchers constructed five different predictive models with the dual goals of differentiating between people with early Parkinson’s and people without disease, and between people with early Parkinson’s and people with SWEDD.

Conceptually, these models were constructed by feeding clinical, biological, and demographic data into computers. Then, using specialized algorithms, the computer develops rules for distinguishing between the two relevant groups. The different models used are essentially just different underlying algorithms for this same purpose.

“Every feature used was first proven relevant in the literature. Of those, we allowed each model to pick out which predictors were most important,” study co-author Charles Leger, a PhD candidate at York University in Canada, said in a press release. “No model is guaranteed to provide the best fit. With five models, if you get the same feature that stands out, then you know that particular variable is very important in distinguishing disease. Neurologists could apply one or more of the models to their own data to … distinguish Parkinson’s pathology from pathology masquerading as Parkinson’s.”

The data used for the models was obtained from the Parkinson’s Progression Markers Initiative (PPMI) database, an observational, international clinical study to establish Parkinson’s biomarkers. The specific features analyzed in the models included loss of sense of smell, education, daytime sleepiness, and rapid eye movement (REM) sleep behavior disorder.

In total, data for 295 people with early PD, 43 with SWEDD, and 130 with no evidence of disease were analyzed. In order to be able to test their models, the researchers built them using only a subset of this data. The models were then tested on the remaining data.

The diagnostic accuracy of the models was assessed by calculating the area under the receiver operating characteristic curve (AUC). AUC is a statistical measurement of how well a given model can distinguish between two groups — in this case, early Parkinson’s vs. no disease and early Parkinson’s vs. SWEDD, in the two respective analyses. AUC values can range from 0 to 1; a value closer to 1 indicated better distinguishing accuracy.

All five models performed well at distinguishing early Parkinson’s from no disease; AUC values ranged from 0.86 to 0.928. Distinguishing early Parkinson’s from SWEDD was less definitive, with AUC values between 0.743 and 0.863.

“The discrepancy of model performance between early PD/control and early PD/SWEDD classification is, at least in part, due to the wide range of disorders encompassed by the SWEDD category,” the researchers wrote, noting that some in the field have called for a removal of the term or category SWEDD for this very reason.

Across the models, loss of sense of smell was the most important differentiator of early Parkinson’s in both analyses, with the second-most important being REM sleep behavior disorder. This indicates the importance of these symptoms in identifying early Parkinson’s disease.

Interestingly, daytime sleepiness, age, and education were important for distinguishing early Parkinson’s from SWEDD, but weren’t important for differentiating early Parkinson’s from no disease. Other variables, including levels of Parkinson’s-related biomarkers in the fluid surrounding the brain and spinal cord (cerebrospinal fluid, CSF), namely alpha-synuclein, were more important for distinguishing early Parkinson’s from no disease than from SWEDD. These findings, “warrant further investigation,” the researchers wrote.

Overall, this study supports the use of these models for detecting early Parkinson’s disease.

“These models could be very useful in differentiating patients who may present with Parkinson’s-like symptoms not related to Parkinson’s pathology from patients who actually have the disease,” said study co-author Joseph DeSouza, PhD, a professor at York University.

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Possible Link Found Between Vitamin B12 Levels and Dementia in Parkinson’s

vitamin B12 and dementia

People who have higher levels of vitamin B12 in their blood when they’re diagnosed with Parkinson’s disease may be less likely to develop dementia, a study suggests.

The study, “Higher vitamin B12 level at Parkinson’s disease diagnosis is associated with lower risk of future dementia,” was published in Parkinsonism & Related Disorders.

Dementia describes a group of symptoms in which memory and cognitive abilities become impaired enough to affect daily life. Dementia can be part of the non-motor symptoms associated with Parkinson’s disease; it is most common among people who are older and/or have had Parkinson’s symptoms for longer.

Vitamin B12 is a cobalt-containing molecule present in some foods. It is necessary for bodily processes, including red blood cell function and DNA synthesis.

Previous research found that, among people with Parkinson’s, those with cognitive impairment, such as dementia, had significantly lower levels of vitamin B12 in their blood. This suggests the possibility that low vitamin B12 levels predispose certain individuals to dementia.

Researchers decided to further investigate this idea by testing whether vitamin B12 levels at diagnosis were associated with dementia risk later on. To do this, they analyzed clinical data for people with Parkinson’s whose data had been collected as part of the Rochester Epidemiology Project.

They found 25 people with Parkinson’s (17 males, eight females) whose data also included a measurement of blood B12 levels within either one year before or three months after their diagnosis.

“This duration range was chosen to limit the impact of levodopa treatment, which has been associated with increased homocysteine levels and lower vitamin B12 levels,” the researchers wrote.

The median age of the group at diagnosis was 74 years. Of the 25 people included, 15 (60%) were later diagnosed with dementia, at a median age of 79.4 years.

On average, individuals who did not develop dementia had significantly higher vitamin B12 levels when they were diagnosed than those who did (648.5 vs. 452 ng/L).

With additional statistical modeling, the researchers found that a cutoff of 587 ng/L could separate those who did or did not develop dementia, with an overall sensitivity (true-positive rate) of 87% and a specificity (true-negative rate) of 70%.

The researchers further calculated that for every 100 ng/L increase in vitamin B12 levels at diagnosis, there was a statistically significant decrease in dementia risk, such that “a vitamin B12 level of 500 ng/L was associated with a 69% reduced risk of dementia compared with 400 ng/L,” they said.

These data suggest that vitamin B12 levels at Parkinson’s diagnosis are predictive of future dementia risk.

“The association between higher serum B12 levels and decreased dementia risk may provide prognostic information for clinicians as they counsel patients on the disease course of PD and raises further questions regarding the potential importance of vitamin B12 in these patients,” the researchers wrote.

It should be stressed that this was a small, retrospective study, so further research is needed to validate these findings. Additionally, the findings do not directly suggest that taking vitamin B12 supplements would lower the dementia risk — though this may be an avenue for future investigations to explore.

“Prospective evaluation of vitamin B12 status in PD is needed, and consideration of interventional B vitamin supplementation trials should be pursued,” the researchers wrote.

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15 Patient Ambassadors Tapped for 2022 World Parkinson Congress

Parkinson Ambassadors WPC 2022

A diverse group of 15 Parkinson’s (PD) patients — all described as “invaluable” advocates — have been appointed as Ambassadors for the 6th World Parkinson Congress (WPC), to be held in Spain in June 2022.

Chosen by the World Parkinson Coalition, these new ambassadors represent 11 countries and, collectively, have more than 100 years of experience living with the neurodegenerative disease. Each has attended at least one WPC.

As activists in the Parkinson’s community, many of the ambassadors have spent years addressing governmental entities, launching nonprofit organizations, spearheading advocacy movements, educating newly diagnosed patients, or fighting for better patient care. Most have long lobbied for more funding for Parkinson’s research, and have sought to raise awareness of the disorder that affects more than 10 million individuals globally.

In their role as ambassadors, the group will promote the international, interdisciplinary forum that will take place June 7-10 in Barcelona. Some 4,500 delegates from more than 60 countries are expected at the event, which offers discussion of the latest PD scientific discoveries, medical practices, and caregiver initiatives.

The goal of the triennial Congress, founded and led by the Coalition, is to advance a comprehensive approach to Parkinson’s treatment by bringing together members of the entire PD community. That includes those from professional medical and scientific organizations, patient services groups, and countries’ governmental health ministries. Also attending will be patients, caregivers, and a broad range of researchers and healthcare professionals.

The forum will include scientific abstract presentations, plenary sessions, special in-depth meetings, roundtable discussions, lectures, and daily wrap-ups. Conference ambassadors play a big role in WPC support.

“We are thrilled with our newest group of Parkinson Ambassadors,” Elizabeth Pollard, WPC executive director, said in a press release.

“Their combined years of living with PD and experience as advocates in their communities gives them incredible insight [into] what is helpful to people with Parkinson’s, and they are great teachers to the researchers who rarely [meet] people with Parkinson’s in person,” Pollard said. “They will be advocates for the WPC while they raise awareness about Parkinson’s around the globe as we count down the months to the 6th World Parkinson Congress.”

Outreach efforts may include talks to local support groups, writing blogs or articles for news outlets, and generally encouraging community members to attend the forum.

One ambassador, Sandra Elms of Australia, is a former science teacher and University College London researcher. She is a big proponent of the international conference.

“Where else can you have the opportunity to sit at a round table with prominent scientists/researchers and have a genuine dialogue,” she said. “Where else will you meet people from all over the world who are doing so much to improve the lives of people with Parkinson’s, where else are you able to meet people with the disease from all over the world and see how they’re coping with their symptoms,” Elms said.

“I have been privileged to be able to go twice to WPC and would strongly encourage others to go,” she added.

A roster of WPC Parkinson Ambassadors and their biographies is available here.

Monitor this site for WPC programming and registration information.

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