Parkinson's Patients "Roar" on Faster Route to A Cure

Parkinson's Patients "Roar" on Faster Route to A Cure

This is Parkinson’s Awareness Month.  It’s a time to celebrate what has been learned and to push the process further along.  There is no screening test to diagnose Parkinson’s disease (PD) early.  Researchers are searching for biomarkers – telltale signs of the disease – that would allow earlier treatments and provide insight into possible cures.  At the moment, medications, exercise, creative activities, and surgery can reduce the symptoms of PD, but there is no way of stopping the disease in its tracks.

Yet, this is a very promising time in PD research.  A key reason is an emerging collaboration between PD patients, physicians and scientists in determining research directions.  Patients are influencing the course of PD science as never before.  Once considered weak victims of a devastating disease, they have become influential collaborators in the search for a cure.

When I was first diagnosed with PD over a decade ago, patient input was close to negligible.  Definition of the disease was narrow.  A diagnosis required a set of motor indicators shared, it was assumed, with all true PD patients.  PD was a brain disease – short and simple.  Now, through the collaboration of patients and experts, we know that PD looks different across patients at various points in time and some have little in the way of noticeable tremor.  The disease may even reveal itself in gut or nasal bacteria before commonly known symptoms are evident. 

Patient involvement in PD research is moving the route to a cure from pot-holed, one-lane back roads to multiple-lane avenues of shared information.  Rather than passive objects of study, PD patients are actively involved in finding a cure.  Their input has led to a realization that the best treatment for PD is individualized.  In fact, Parkinson’s disease may not be one disease at all.  Treating it may be more a matter of patient-doctor communication about which symptoms are in need of attention at any given point in time than finding a single medication to meet all challenges.  

Not long ago, what became known as non-motor symptoms, among them changes in cognition, digestive problems, and sleep difficulties, were considered irrelevant to finding biomarkers or a cure.  Yet patients live with these symptoms and they saw the link to PD.  Now most non-motor symptoms are viewed as treatable aspects of PD and potential, crucial clues to a possible cure.

As Dr. Zolton Mari, MD, interim director of the Parkinson’s and Movement Disorders Center at Johns Hopkins University in Baltimore, explains, “Clinically there is heterogeneity.  Patients may be tremor dominant; they may be more rigid. The prognosis varies across a significantly wide spectrum.”  He adds, “In this whole complex mash of what works for whom, if we could make sense of that better, you know we don’t have to invent the magic, miracle pill to stop Parkinson’s if we could just use all the information and apply it to find what works for each individual patient.”  How better to do that than to ask patients themselves to be involved? 

Amy Comstock Rick, J.S., CEO of the Parkinson’s Action Network, shared with Neurology Now that patients and advocates need to be involved every step of the way.  Her view:  “No research is successful in isolation.”  The Parkinson Disease Foundation, Parkinson’s Alliance and European Parkinson’s Disease Association, to name a few, invite patients to become advocates not only for spreading awareness of PD and involving patients in clinical trials, but in lending their voices to the choice of research directions. 

Each April in New York City’s Central Park, thousands of PD patients, their families and friends join the Unity Walk.  Such walks take place in Europe and around the world as well.  These colorful, joyful experiences bring together the very people who hold the key to a disease that has long baffled those who commit their lives to studying it.

Research on a disease such as PD in isolation of patient input is a recipe for failure.  Patient subjects are not the messy necessity of science.  They are the reason for its existence.  If science is to be useful, it’s imperative to understand the people being studied.  They used to be the last group asked about the problem being investigated.  They were victims.  Today, you can hardly read about Parkinson’s without learning of the important role played by patients.  They learn from each other, share their observations and increase the likelihood of better treatments and ultimately a cure. 

Parkinson’s disease remains a tough challenge, but the battle is heating up and more soldiers are wearing t-shirts, carrying signs, marching in optimistic solidarity for a cure, raising funds, speaking up, sharing their research preferences and making a huge difference.  It's a great model for PD research and for medical science as a whole.

Photo compliments of The Unity Walk

Golden blood: The rarest blood in the world

We explore the history of blood types and how they are classified to find out what makes the Rh-null type important to science and dangerous for those who live with it.

What is the rarest blood type?

Abid Katib/Getty Images
Surprising Science
  • Fewer than 50 people worldwide have 'golden blood' — or Rh-null.
  • Blood is considered Rh-null if it lacks all of the 61 possible antigens in the Rh system.
  • It's also very dangerous to live with this blood type, as so few people have it.
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China's "artificial sun" sets new record for fusion power

China has reached a new record for nuclear fusion at 120 million degrees Celsius.

Credit: STR via Getty Images
Technology & Innovation

This article was originally published on our sister site, Freethink.

China wants to build a mini-star on Earth and house it in a reactor. Many teams across the globe have this same bold goal --- which would create unlimited clean energy via nuclear fusion.

But according to Chinese state media, New Atlas reports, the team at the Experimental Advanced Superconducting Tokamak (EAST) has set a new world record: temperatures of 120 million degrees Celsius for 101 seconds.

Yeah, that's hot. So what? Nuclear fusion reactions require an insane amount of heat and pressure --- a temperature environment similar to the sun, which is approximately 150 million degrees C.

If scientists can essentially build a sun on Earth, they can create endless energy by mimicking how the sun does it.

If scientists can essentially build a sun on Earth, they can create endless energy by mimicking how the sun does it. In nuclear fusion, the extreme heat and pressure create a plasma. Then, within that plasma, two or more hydrogen nuclei crash together, merge into a heavier atom, and release a ton of energy in the process.

Nuclear fusion milestones: The team at EAST built a giant metal torus (similar in shape to a giant donut) with a series of magnetic coils. The coils hold hot plasma where the reactions occur. They've reached many milestones along the way.

According to New Atlas, in 2016, the scientists at EAST could heat hydrogen plasma to roughly 50 million degrees C for 102 seconds. Two years later, they reached 100 million degrees for 10 seconds.

The temperatures are impressive, but the short reaction times, and lack of pressure are another obstacle. Fusion is simple for the sun, because stars are massive and gravity provides even pressure all over the surface. The pressure squeezes hydrogen gas in the sun's core so immensely that several nuclei combine to form one atom, releasing energy.

But on Earth, we have to supply all of the pressure to keep the reaction going, and it has to be perfectly even. It's hard to do this for any length of time, and it uses a ton of energy. So the reactions usually fizzle out in minutes or seconds.

Still, the latest record of 120 million degrees and 101 seconds is one more step toward sustaining longer and hotter reactions.

Why does this matter? No one denies that humankind needs a clean, unlimited source of energy.

We all recognize that oil and gas are limited resources. But even wind and solar power --- renewable energies --- are fundamentally limited. They are dependent upon a breezy day or a cloudless sky, which we can't always count on.

Nuclear fusion is clean, safe, and environmentally sustainable --- its fuel is a nearly limitless resource since it is simply hydrogen (which can be easily made from water).

With each new milestone, we are creeping closer and closer to a breakthrough for unlimited, clean energy.

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The symbol for love is the heart, but the brain may be more accurate.

  • How love makes us feel can only be defined on an individual basis, but what it does to the body, specifically the brain, is now less abstract thanks to science.
  • One of the problems with early-stage attraction, according to anthropologist Helen Fisher, is that it activates parts of the brain that are linked to drive, craving, obsession, and motivation, while other regions that deal with decision-making shut down.
  • Dr. Fisher, professor Ted Fischer, and psychiatrist Gail Saltz explain the different types of love, explore the neuroscience of love and attraction, and share tips for sustaining relationships that are healthy and mutually beneficial.

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There never was a male fertility crisis

A new study suggests that reports of the impending infertility of the human male are greatly exaggerated.